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A place to whinge about chronic pain

(252 Posts)
PliezReleaseMe Thu 24-Mar-11 21:25:58

...so that I do less of it in real life.

For me it's hypermobile joints and particularly knee pain, have had it for 20 years & recently had surgery to correct it. Still too early to tell what impact it will have.

Right now though I just want to have a good old sob and a whinge and say that I am fed up of having to think about pain, manage pain, medicate for pain, find ways to overcome or push through pain. I am tired of having constipation/runs, hives, itchy skin and brain fog from pain meds. I am tired of having anxiety attacks because of frustration about my restricted mobility.

I know everyone gets aching joints, but there are times when the pain is so bad that I feel faint and nauseous.

Does anyone else manage chronic pain, the kind that no-one can promise will heal or get better? What strategies do you use?

PliezReleaseMe Thu 24-Mar-11 21:30:18

Oh dear, I think that might be the most uninviting thread title I have ever read.

AtYourCervix Thu 24-Mar-11 21:38:32

sucked me in grin

my back hurts. it's been hurting for about 6 weeks now (this time).

Seeing osteopath again tomorrow but it's not helping at all. I'm functioning and able to work but it still hurts and i have to be constantly careful. the shootig pain down my thighs makes me feel sick. Tens is my best friend.

And i can't sleep properly. it wakes me up when i thrash around turn over. which in turn makes me bloody knackeredall day.

so. probably need to go back to the docs again.

herbietea Thu 24-Mar-11 21:47:33

Message withdrawn

PliezReleaseMe Thu 24-Mar-11 21:55:28

Sorry to hear about your back (and to suck you in grin )

The word "functioning" stands out in your post. Grim, innit?

I can also relate to having to be careful about doing everything. I was walking along chatting to someone whose company I really enjoy today, and I couldn't give them my attention because the pavement was on a camber and it was killing me. I can't really say "please hold that thought until we get past that lampost over there." Cambers are the devil's work.

Sleeplessness, too. DH has been doing nights with our youngest for the last few weeks due to surgery (I did try one night, but my leg fell out of bed too quickly in the dark and my yelling woke the whole house up). He is still sleeping better than me, although I do get to lie down all night mumsnetting on my phone

Does anything trigger your back pain or is it a randomly visiting bastard?

PliezReleaseMe Thu 24-Mar-11 21:59:25

Goodness herbietea, that sounds really tough. Well done you.

What is the surgery for? One good thing I have found about my recent surgery (trying glass half full here) is that I could go to bed with impunity for a while.

I'm now getting to that stage where people can see me doing a bit and expect me to be back to "normal".

AtYourCervix Thu 24-Mar-11 22:00:05

Herbs that sounds really shit. mine is mild in comparison.

i've a dodgy weak spot which pops randomly. think it's a disk.

PliezReleaseMe Thu 24-Mar-11 22:07:18

Randomly visiting bastard, then. They tend to have shit timing, don't they?

herbietea Thu 24-Mar-11 22:33:47

Message withdrawn

ohboob Thu 24-Mar-11 22:51:21

hi,
Great to see this thread. I'm coping at present, but do have more moments of struggling than not struggling IYSWIM. Chronic pain for 17 years, since the age of 11. At times very severe. I have EDS and M.E.

It has been a terrible year so far but as I said I'm much better at present. I have a great osteo and just have to take it very easy (which gets extremely boring and frustrating).

PliezReleaseMe Thu 24-Mar-11 22:54:58

I hope it gives you a good result then, herbie. It's amazing how much surgery advances from year to year.

Have you got lots of help planned post-surgery?

thequeensspeech Fri 25-Mar-11 09:53:32

I'll join in too. I've been in chronic pain for 9 months now, which I know is nothing compared to the years of suffering some of you have endured. Cannot walk without pain, every step is agony. My gp thinks its my SI joints. I've been seeing an osteopath, infact paid out another £40 yesterday for the pleasure. The result has been nada, got up this morning and the pain stated as soon as I began moving. Bloody sick of it.

It sucks sad

drawn me in I have psoriatic arthritis. I don't tend to complain irl though I do state if it is particularly bad. It is quite bad at the moment. That is because I am rubbish at resting. I often refuse to give in when perhaps I ought. there is so much to do in life and time marches on so quickly! Making me privately quite tearful atm.

I think friends think it is a few sore joints. They don't realise the exhaustion and generally slightly fluey feeling that goes with it. Stated it was bad to a friend yesterday. Her response was 'is it?' and that was that. Some sympathy and acknowledgement would on occasion be quite welcome.

You are all having it rather rough herbietea - you are a bit of a wreck grin I really really hope that the surgery helps because it sounds close to unbearable.

Here is hoping that Spring provides a little relief to some of us.

AtYourCervix Fri 25-Mar-11 17:57:51

I hve been accupunctured. weird.

KatyMac Fri 25-Mar-11 18:03:01

Can I come too?

I have (maybe) reactive arthritis along with IBS, CFS, Partial prolapse, unstable hips & a bladder repair

I hurt

AtYourCervix Fri 25-Mar-11 18:23:15

i'd offer wine but i've given it up for lent.

feel most odd after my puncturing. is that normal?

KatyMac Fri 25-Mar-11 20:23:30

I am spending a fortune on hot water; the bath is the only place I am less uncomfortable

I didn't like acupuncture; but acupressure is fab

EngelbertFustianMcSlinkydog Fri 25-Mar-11 20:28:59

Message withdrawn at poster's request.

KatyMac Fri 25-Mar-11 20:37:08

What? Do you mean life?

EngelbertFustianMcSlinkydog Fri 25-Mar-11 20:41:48

Message withdrawn at poster's request.

KatyMac Fri 25-Mar-11 20:57:23

I did that a while ago (95-97); I now live a very 'controlled' life. I make decisions about which things I can do.

DD's psychologist pointed this out as a bad thing but while it's lovely to pop off to London for the weekend or spend the whole day at the beach it's not so good if it means you can't work for the next week.

'Control' should be a bloody swear word

EngelbertFustianMcSlinkydog Fri 25-Mar-11 21:10:15

Message withdrawn at poster's request.

KatyMac Fri 25-Mar-11 21:12:39

I cheat; I'm self employed grin

Just re-reading the OP and yes I agree pain & nausea go together

I wish I had a big tattoo or a rash; so I could say 'Look you can see I am ill'

EngelbertFustianMcSlinkydog Fri 25-Mar-11 21:24:16

Message withdrawn at poster's request.

ArthurPewty Fri 25-Mar-11 21:28:17

just wanted to say you're not alone.

I have: myofascial pain syndrome,
C5/6 bulging disc, annular tear (whiplash 15 years ago).
facet joint arthrosis C7/T1. (wear and tear?)
widespread fibromyalgia,
hypermobile joints (which underpin a lot of the neck, back and other pain problems).
overpronated feet. (orthotics, meh)
rectocele
cystocele (from two very large babies, despite having sections!!)
two chronic anal fissures
an underactive thyroid for the last decade
a propensity to migraines (lesser now than in my twenties, but have one tonight!)

and no driving license.

life sucks sometimes.

ArthurPewty Fri 25-Mar-11 21:29:15

oh, and two autistic kids to accompany my chronic pain and exhaustion.

herbietea Fri 25-Mar-11 21:52:16

Message withdrawn

AtYourCervix Sat 26-Mar-11 10:23:52

Herbs where are you? do you at least have people who can pop in and make you tea/pass the laptop/painkillers?

herbietea Sat 26-Mar-11 10:35:52

Message withdrawn

Hello all, can I ask you to budge up very gently so that I can sit down and join you?

I've got Ehlers Danlos Syndrome, hypermobile type. I've got a history of dislocations, subluxations and lots of bruising. I'm trying very hard to sort out the problems as they come up, but they are relentless in their appearance.

I've been working on my weak ankles and do strengthening exercises every day. They seem to be working and as a side effect I have noticed far, far less pain in my feet. It's made me realise that physio exercises sometimes work, but it takes a lot longer than any normal person would expect.

My biggest issue is finding a physio who has heard of EDS, or doesnt pull me around because they've never seen anyone so bendy. It's a problem for anyone with hypermobility issues. I need a physio who is both close to where I live (lots of travel just isn't possible when in pain) and who understands extreme bendiness - there must be a gap in the market for physios.

Sorry, went on a bit, but the part about strengthening might be useful.

EngelbertFustianMcSlinkydog Sat 26-Mar-11 12:13:21

Message withdrawn at poster's request.

ArthurPewty Sat 26-Mar-11 13:43:22

how do you know if you have Ehlers Danlos? just an aside. i've always wondered about myself, tbh.

KatyMac Sat 26-Mar-11 13:46:52

Bad day today, can't stand or sit or lie

I'm going to take pain killers & go to bed I think

Sorry

EngelbertFustianMcSlinkydog Sat 26-Mar-11 13:53:03

Message withdrawn at poster's request.

Thank you Englebert <sits down, hands out Nurofen>. There are some excellent physios out there, but they're still too few and far between. Good luck with the move, hope you get lots of help. True about the time they can take, they're not going to cure us, so there are no outcomes for them to be measured on.

Hi LD. I was diagnosed by a Consultant Rheumatologist at UCL. It was a long path to get there. I was fairly lucky in that my GP didn't give up. He got it wrong a few times, but we just kept going. What makes you think you have EDS?

Sorry that you're feeling so rough Katy, I hope you get some relief.

AtYourCervix Sat 26-Mar-11 15:55:14

Don't apologise Katy. You'll make everyone else feel bad for doing the same grin

My back is bloody niggly today. Saw osteopath yesterday (again) and it seems to have stirred things up a bit.

Might have to go and lie down a bit.

KatyMac Sat 26-Mar-11 16:13:08

am back

Now I get to run DD to a party/sleepover and write 2500 words for OU

& my hands hurt

EngelbertFustianMcSlinkydog Sat 26-Mar-11 16:51:43

Message withdrawn at poster's request.

Here! Why do we just add to our workload?

Try staring with tiny blocks of writing. It will take a bit of effort at the end to make it flow, but you need to chip away at the word count.

EngelbertFustianMcSlinkydog Sat 26-Mar-11 17:11:54

Message withdrawn at poster's request.

It doesn't sound easypeasy, it sounds like hard work, you're doing something that's actually quite difficult. What subject are you studying?

EngelbertFustianMcSlinkydog Sat 26-Mar-11 18:32:30

Message withdrawn at poster's request.

PliezReleaseMe Sat 26-Mar-11 18:49:46

Herbietea, I hope your kids are helpful while you're non-weight bearing (and once you start to get about a bit) I imagine that you are setting a great example to them about all sorts of life skills; patience, co-operation, handling adversity... I could go on...

Hello to newcomers to the thread <offers comfy electric lifting chairs and hands out the Voltarol>

I went upstairs to do my physio on the bed earlier as I couldn't find a leg-size gap anywhere downstairs this morning. Next thing I knew it was teatime. Lovely to have a sleep.

Pain is that annoying 7 out of 10 today, not bad enough to stop doing things but really energy-sapping. Boo hiss

KatyMac Sat 26-Mar-11 18:56:37

'energy sapping' I like that; I might use it

AtYourCervix Sat 26-Mar-11 19:02:08

Tens on. I love my Tens.

Good luck Englebert, writing about yourself can be tricky in academic writing, you just have to grit your teeth, pretend you're writing about someone else and get it done.

Thank you for the thread Pliez. <points to where the voltarol is needed>

KatyMac Sat 26-Mar-11 19:23:09

What's Voltarol can I have some ?

AtYourCervix Sat 26-Mar-11 19:24:37

Diclofenac. an anti-inflammatory. it's good stuff (but not if you are asthmatic or have stomach/blleding problems)

moondog Sat 26-Mar-11 19:27:03

Have any of you read
Teach me to sit still?

A very very interesting read by a guy dealing with chronic pain and conquering the grip it had over him.

OracleInaCoracle Sat 26-Mar-11 19:27:57

marking place

KatyMac Sat 26-Mar-11 19:30:47

Oh no - I had that; it didn't agree with me

I felt a bit lightheaded & dizzy on it; I wonder if it affects blood pressure

I'm on Naproxen which gave me nosebleeds; but they have stopped now

frogmella666 Sat 26-Mar-11 19:31:33

hi everyone only just seen this thread.
would it be alright if i had a little whinge with you because at least you will understand what i'm talking about.
i have hms/sle nephritis/cfs and i have blackouts. i also have 3dc (1ds 2dd) ds is adhd/asd.
my dr keeps using me as a pin cushion and as for medication i could open a chemist (my neighbours nick named me boots).
it doesn't matter how many painkillers i take everything aches,my joints keep dislocating and all i can do is pop them back in add to that it is taking ages to write this post because i have sausage fingers.sad

ok whinge over wink

MissusF Sat 26-Mar-11 19:32:34

Can I join in:

i have Lupus, Fibromyalgia, and CFS.

Its a nightmare, meds are pretty good, unless in a bad flare, then nothing touches it.

thequeensspeech Sat 26-Mar-11 19:59:33

herbietea thank for advice, my gp did mention steroid injection and have booked an appointment to discuss. Pain really bad this weekend, probably because I had to drive the dcs around, driving always seems to aggravate the pain but as we live in a rural area with crap public transport, can't be avoided!

Highlight of my day was when I was doing my exercises (found on t'net, but so desperate will try anything) bum stuck in the air while I rocked my pelvis back and forth only to look up and see my very fit neighbour staring at me blush

I hope everyone is enjoying a relatively pain free evening, I'm self medicating on wine...

It looks intersting moondog. Thanks for the pointer.

ArthurPewty Sat 26-Mar-11 20:42:18

area: because in this link, the photo of the thumbs, mine do that, though not as bad as i've gotten older. I am hypermobile with flat feet, intense fatigue sometimes, and have pain in most of my joints, most of the time. there isnt a day goes by i'm not hurting somewhere.

And basically the list of sx fits me to a tee: hypermobile joints, dislocations, bruising, sprains, flat feet, joint pain, osteoarthritis already in my neck facet joints since i was 30, scars, and many, many more...

KatyMac Sat 26-Mar-11 21:07:13

I bought a folding table with different heights & angles so I could 'sit' properly & type; it doesn't help sad

I can't get comfy

orienteerer Sat 26-Mar-11 21:13:57

Can I join please, chronic [[http://en.wikipedia.org/wiki/Greater_trochanteric_pain_syndrome trochanteric (hip) bursitis). Two years this time (also 8 years ago), nothing is shifting it, I'm now in serious stretching/glute excersisessad.

orienteerer Sat 26-Mar-11 21:14:43

Can I join please, chronic trochanteric (hip) bursitis. Two years this time (also 8 years ago), nothing is shifting it, I'm now in serious stretching/glute excersises.

orienteerer Sat 26-Mar-11 21:15:21

....and learning to spell and do links.......

Leonie - it does sound like you have a lot of the symptoms. It might be worth asking your GP if you could see a rheumatologist. If you get a diagnosis you might be able to tap into more specialist physio and pain help.

ArthurPewty Sun 27-Mar-11 09:25:12

I had my first driving lesson today and found that my right calf is almost too stiff/tight to work the brake properly.

Meh. I suspect i've needed to see a rheumy for a long time, just afraid my Gp will say no. I also have livedo reticularis on my legs and arms, and dont know what it could mean...

I have just had my tablets and am now rattling... Would you mind if my tiptoed in to say hello? I wouldn't want to wake anyone who has just finally found a comfy position to sleep though hmm

I have chronic daily headaches..some of them migraines, bulging neck discs, damaged coccyix and back following SPD with DDs pregnancy. Am convinced I have fibromyalgia..have pain in lots of different spots and always tired..I hate it when you fall asleep only to be woken with burning pain in hip, ear, shoulder etc..
Have gall bladder motility dysfunction which leaves me with chronic pain and nausea...removing my gall baldder in Jan didn't help...it has made me worse as I developed complications and needed more surgery....cannot enjoy comforting chocolate anymore as it makes symptoms worse...but I still try.

Anyone else feel like you need to make numerous weekly dr appointments to get all your problems sorted?...drs only have time now to deal with one thing at a time. I don't however go to the dr as often as I probably should..

KatyMac Sun 27-Mar-11 09:38:52

Working on OU homework today; really struggling to find somewhere to sit comfortably. Typing hurts + drugs make me lethargic= Little coursework

How are we all today?

ArthurPewty Sun 27-Mar-11 09:51:20

I gotta take my eldest to clarks and get her shoes swapped out for a size wot fits, and might pop into next and see if they still have any age 7 skinny jeans for her since they fit her so nicely.

My husband smashed his fingers yesterday working on the car so he needs to go get them seen to today, so once we're back he'll go to the walkin centre.

just need to drag myself up to the shower, bleurgh...

Sassyfrassy Sun 27-Mar-11 09:59:00

Hello everyone, I have constant but as yet undiagnosed pain. I've got flat feet which have caused me pain since I was a teenager. The pain has in the last couple of years gotten much worse with very stiff feet and pain when walking far. At the moment it's very very bad and walking hurts a lot. After a little while the pain does get a bit better, but then when I sit down it gets worse again =( My left hip is now also very painful, extremely stiff when I've been still and I find myself limping. Also got knee pain to go with it.

I'm not really taking any medication but just managing, got a doctors appointment this week and feel worried that it will just be laughed off or blamed on me being a bit overweight =(

Tee2072 Sun 27-Mar-11 10:35:31

Hi all.

I'm 42, have fibro and arthritis. And a 22 month old son!

I am currently flairing and my arms are killing me. Not very fun when 22 month old wants to be picked up.

EngelbertFustianMcSlinkydog Sun 27-Mar-11 10:35:36

Message withdrawn at poster's request.

EngelbertFustianMcSlinkydog Sun 27-Mar-11 10:37:49

Message withdrawn at poster's request.

deepbreath Sun 27-Mar-11 11:16:41

Wow, quite a few of you have hypermobility, EDS and similar. Dd and dh have Marfan Syndrome, so they share a lot of issues with you.

After dd was diagnosed, on the way back from picking up her first ever pair of glasses from the optician at hospital, my car was driven into by a large van. 6 years on, I have arthritis in my neck and lower spine and whilst having tests for that I have been told that I also have a neurological condition, possibly multiple sclerosis. I have pain, frequent falls and other strange things going on as well as the arthritic pain.

As I was the one that did everything as dh is in no fit state after being at work (as well as him needing fairly regular operations), to put it bluntly this is a bit of a fuck up. We also have ds who is almost 9, and he has to put up with a lot. I get no help at all from anywhere, so if I cannot do something it doesn't get done. I feel so bloody guilty all the time over something that isn't my fault.

KatyMac Sun 27-Mar-11 11:22:12

I have said (time & time again; I can be quite boring sometimes) that there is some connection between:
ME/CFS
Lupus
Fybromyalgia
other auto-immune conditions

The symptoms are so similar for some of them, there must be some sort of connection, whether genetic, predisposition, viral - whatever

I mean I have always had mouth ulcers, always I have had antibiotics/steroids for them often.......& they come on so many lists

I have some hypermobility (I think) my fingers and toes are double jointed, I was always very supple & good at Ballet/gym, until my hip started falling out grin

shitmagnet Sun 27-Mar-11 11:46:43

Thanks for the book moondog

Officially just lurking, but will mention I have RA (every joint, recently dx after first big flare). Currently going through another health nightmare which needs sorting before I can commence another med.

PliezReleaseMe Sun 27-Mar-11 13:41:35

Moondog, thank you, I will check that out. I say to DH "I am going to sit for a bit" now and then.

Today I am rather excited as I went to turn the car engine over (preventing flat battery, have had that before after a long period of not being able to drive, SO frustrating!) anyway for weeks now I have been unable to move my foot between accelerator & brake. Anyway cut it short (sore knuckles) I have just driven around the block. Woo hoo! So we are having an exciting outing later to the riverside about half a mile away. What with the clocks changing it will be 3pm by the time we leave but still, yay.

Restful Sundays everyone x

KatyMac Sun 27-Mar-11 15:59:21

My back/shoulder/arm/hand hurts

I may take a pain killer

Bloody homework

ArthurPewty Sun 27-Mar-11 16:03:00

contrary to logic, i find exercis so damn helpful... the buzz lasts for hours - its just getting up the energy / reschduling everything else, to allow me to jog/run/whatever. I havent seen the gym in forever because i have no one to sit the kids...

moondog Sun 27-Mar-11 17:03:59

Exercise really deos make a differnece I find.
I have a long standing shoulder problem that causes me permanent pain but running and aerobics and going to the gym keep me loose and flexible and the psain under control. For that reason I make it a priority.

ArthurPewty Sun 27-Mar-11 17:11:57

Its the high i like - its quite addictive but leaves me so wrecked for days after that its hard to achieve unless i make a deliberate point of doing it / get into a routine.

I had a routine a year ago of going to the gym, i lost half a stone and toned up - it was lovely. But it became apparent that DD2 was not going to tolerate the creche and i had to quit going.

Sometimes, though, i am genuinely just too tired to do any more than i have to (4 miles a day 5 days a week doing the school run alone). kwim?

i also deliberately avoid taking painkillers / try and do something to get that adrenaline/cortisol burst so i get natural pain relief rather than pills.

I rattle enough as it is, and i feel guilty every time i have to take meds (thyroid, baclofen, clonazepam, dihydrocodeine, propranolol)

EngelbertFustianMcSlinkydog Sun 27-Mar-11 18:12:07

Message withdrawn at poster's request.

KatyMac Sun 27-Mar-11 18:13:55

I so agree about baths; but I can't risk one if DH isn't in the house sad

The pain is getting bad again now; but I still have loads of work to do so I don't feel I can take a pain killer

orienteerer Sun 27-Mar-11 18:18:40

Sassyfrassy - my (completely un-expert) diagnosis is Plantar Fascisitis (feet) & Trochanteric Bursitis (hip)........I've had/have both.

herbietea Sun 27-Mar-11 18:58:02

Message withdrawn

AtYourCervix Sun 27-Mar-11 22:22:11

Back from work. Ouch.

confuddledDOTcom Sun 27-Mar-11 23:00:50

I'll read the thread at a more reasonable time of day grin

I have had PGP (mostly SI pain) for 5.5 years and been on crutches for 2.5 years. Recently it would appear that I have fibro too, but I think this is something that has been missed rather than a totally new thing, this was after me being terrified I had a blood clot on my lungs (I am a thrombophiliac) and finding out it's because the crutches have caused my chest muscles to sieze up stopping me expanding my lungs fully. It's decreased my mobility more because I get very breathless very quickly - only one direction on the stairs at a time, although it doesn't always work like that with a 4 and 2 year old! I'm also sleeping a lot.

On Friday I was telling my rheumie at antenatal clinic I feel like my right leg doesn't belong to me, not too much pain in the leg itself, although the hip feels like someone is trying to pull the leg out, it's more numbness and lack of response. I've described it as feeling like my leg was prosthetic. After examination they've added degenerative spine disease which is causing something to press on my sciatic nerve, although so much that it's just causing numbness and no sciatica.

Until recently I only used my crutches if I was going somewhere other than in and out of the car but the last couple of weeks I need them a lot more.

This is all on top of Hughes Syndrome and being 25 weeks pregnant - expecting in the next 6-10 weeks.

confuddledDOTcom Sun 27-Mar-11 23:02:33

Oh and with the pregnancy they've just found I have a notch on both uterine arteries so the baby is likely to end up with IUGR and I'm at risk of high blood pressure.

Oh and I have to inject Clexane into my already sore body and it's getting harder the further through I get.

also drawn in :D

I have severe Fibromyalgia and Functional Weakness some days i'm decent as in can walk with my stick and look fairly comfortable, other days like tonight, i'm on couch unable to move, dreading needing the loo and going to bed!

Meds don't seem to do anything for me, fortnightly physio seems to help, but nothing lasts for long. I found pain management helpful but again you cant go to that forever!

This has been me since i was 18 and i'm now 27! Luckily i have a fab DH and DS so that helps! But please feel free to whinge, i feel your pain!

I find because i'm young-ish hmm i get no sympathy i'm looked at like i'm an idiot by others and people think "it can't be that bad" since i try to make the best of situations!

rockinhippy Sun 27-Mar-11 23:10:38

Another here, I've over done the weekend - HA, if only = over doing it for me is very low keyhmm - but too wiped out to type much, but I've a list of chronic pain diagnosis that keeps on growing hmm Fibromialgia, M.E., Chronic Sinus Disease, Chronic Persistent headache, Migraine syndrome, cluster headaches, TOS, CMP etc -

I',m basically dropping to bitshmm . not had a day without a headache in 8 years, frequent migraine& lot of nuropathic pain problems, frequent muscle spasms etc etc, I can relate to a lot of things written here & want to right more, but basically I cope, probably more so because I'm stubborn & refuse to let it win, but I had to say goodbye to my old self & even his far down the line things can come up that remind me of that, but lets face it theres always someone worse off than me, soI'm not going to moan to much

Morning everyone. It's heartbreaking to read about the pain people are going through. This thread was really needed, if only for some venting in understanding company.

I was feeling very down about my knee pain on Saturday. There are no good physios close enough for me to get to easily and it will cost a small fortune for me to get to and from the only good one I know. So, in a bit of desperation I typed 'online physio' into Google and found a website. I filled in a questionnaire (pretty detailed) and sent off my money and this morning I have three pages of rehab exercises to do. Lord knows if they'll help, but any normal physio experience ends with me going into shock where ive been pulled around, which means that this one wins round one. Let's see where this particular adventure leads.

Leonie - please don't feel guilty for taking painkillers. I did this for years and wasted so much time. One physio I sawin the past was so emphatic that I have to commit to taking painkillers and not stop just because I've already taken them for a couple of days.

Englebert - I totally understand what you're saying about painkillers. But there must be something that could take the edge off a bit <desperately hopeful face>

EngelbertFustianMcSlinkydog Mon 28-Mar-11 11:14:36

Message withdrawn at poster's request.

ArthurPewty Mon 28-Mar-11 12:10:42

Aseaand: yeah i know, but i kinda like my liver not pickled wink
paracetamol is really truly so hard on the liver...

EngelbertFustianMcSlinkydog Mon 28-Mar-11 12:28:48

Message withdrawn at poster's request.

ArthurPewty Mon 28-Mar-11 12:30:55

oh yeah, i've learned to function on codeine but it does make me feel half asleep all the time. meh.

EngelbertFustianMcSlinkydog Mon 28-Mar-11 12:35:29

Message withdrawn at poster's request.

BionicEmu Mon 28-Mar-11 12:57:19

I'm sorry you're all suffering so much. Just wanted to have a moan myself, no-one else listens!

I have scoliosis, kyphosis and completely irregular/assymmetrical pelvis. As a result keep getting partially herniated discs in my spine, constant sciatica and trapped nerves in my pelvis - left thigh is currently completely numb. I'm 25, but feel like I'm 100. Trying to juggle DS who is only 5 months old with my OU study is really getting too much at the mo. Before getting pregnant (which was interesting with an already-screwed-up pelvis!) I worked full-time, that was hard enough, but nothing compared to now! A couple of years ago doc actually suggested I gave up work, but I was 23 at the time, so I told him no way.

Don't think DH understands, he just gets annoyed that I'm "always moaning."

I find if I don't take my meds I'm in agony, but if I do then my brain just dies.

Anyway, I feel a little better for that whinge, thanks for this thread!

ArthurPewty Mon 28-Mar-11 13:00:21

engelbert: oh yeah, definitely cant medicate for migraine or neck pain if i'm on kid-duty, i just cant function. usually end up waiting til DH gets home from work at 6, and then taking something and laying down til the kids' bathtime at 7.

It takes both of us to do the bathtime/bedtime routine as they have autism...

thequeensspeech Mon 28-Mar-11 14:49:54

Oh god, I am in so much pain today. Why can't I bloody walk 2 minutes without feeling like my pelvis is going to collapse? Friday and my doctors appointment seems like a long way away, and don't know why I'm holding out so much hope anyway... I just want to be be able to walk!

Ok, deep breaths and breathe....

Rant over! off to limp to school to pick up the dcs.

confuddledDOTcom Mon 28-Mar-11 16:05:25

I've been naughty today... I'm going to a medieval meal in about 2 weeks and been making my dress for the last 2 months - I could go quicker, this is what I'm trained to do but it hurts to do for too long and I'm staying with my parents so don't want to hammer it and risk making a mess - so today I've spent 3-4 hours sat on a cold wooden floor cutting out. My one leg is hurts a rather big lot!

I'm another one bad at medicating. My doctors and mw keep saying "it's not pain relief, it's medication for your back!" But I worry about taking them like that. I had a night on the antenatal ward last week and they filled me up on co-dydramol, the difference was amazing and I promised myself I'd do it but never did!

helibee Mon 28-Mar-11 20:23:08

Can I join in too?

I have severe fibromyalgia, CFS and testing for arthritis in my wrist and fingers!

Lisa, I sympathise with the being young so people look at you like what's your problem. I too have had it since 18yrs old, now 28! I often need to use wheelchair. I take tramadol and dihydracodeine every day but still always in pain.

I used to be controlled about what I did until I realised that for me, I could waste a "good day" not doing anything in the hope that I'd have a good week but I could still be in bed for weeks afterwards. So now we just appreciate each day fir what it is and if we get out that's great. My dh and ds (age 3) are both fab, don't know what I'd do without them.

Anyway gentle hugs to all

rockinhippy Mon 28-Mar-11 21:08:41

I'm almost scared to moanangry - & scared to own up to the severe bit attached to my FM & M.E. diagnosis hmm

though I have had a hell of a day with of all things heartburnhmm - lots more going on pain wise, it never lets up TBH hmm but I find moaning about it makes me focus on it & then it hurts all the more, so even this scares me as I really do think "tuning it out" mentally is my best weapon against it -

but that said some pains that just doesn't work for, headaches, heartburn & that nasty crawling burning sunburn nuro pain, neck spasm etc angry - I too am sensitive with meds, so need to stick with the old tried & tested - but even they come with their own payback, so you can't really win hmm

but the pain isn't the worst of it, I'm lucky to have a high pain threshold & can mostly function DESPITE the pain - don't let the b@stard grind you down" & all thathmm

its the exhaustion & cognitive cr@p that I find hardest to bare, lets face it there are NO drugs for that

its just a juggling act all round really, but I'm sure 1 we all know well[shrugs]

herbietea Mon 28-Mar-11 21:20:28

Message withdrawn

herbie - is it possible that the upcoming surgery is making you anxious and so your muscles are tightening and spasming?

confuddledDOTcom Mon 28-Mar-11 22:31:11

Does anyone else get fed up of the comments from strangers? The next person who asks me what I've done to my leg will get a crutch around their neck! Today I was out with my youngest in the wrap sling and someone said "You're struggling" with a big grin on her face... Actually, no I'm not! I'm doing what I've always done, what I need to do to survive parenthood. The only thing I was struggling with was my jeans that kept trying to fall down grin

Oh and that was a nice long walk before I decided to sit on the cold wood floor to do some dressmaking!

helibee Mon 28-Mar-11 23:07:11

I find the comments like "but you look so well, that's a consolation at least isn't it?" well actually no, looking well is no consolation to feeling like crap 24 hrs a day and barely having the energy to get out of bed let alone anything else!

Most days I just smile and get on with it, there's not much else I can do. I do try and think positively but have the odd day where I want to scream into a pillow and cry all day : ( People often look critically when my ds is sitting on my lap in the wheelchair like I've placed this awful burden upon him hmm my dh usually just makes a point of grinning at them until they look away grin

Herbie you said that your dr was stopping the tramadol, has he stopped it already? My friend was stopped tramadol so that she could take morphine tablets but as she was reducing the tramadol she was in agony! Dr hadn't thought ti give her something to tide her over between meds hmm hope you sleep tonight!

Rock, I know what you mean about the fibro fog/mental cloudiness, half the time I am surprised that my ds learnt to talk sense as I'm sure I don't most of the time. I can barely think straight and according to my dh when I'm very tired I keep asking him not to let himself get infiltrated!?! hmm grin

evening all. crept out of bed as I couldnt get comfy and didnt want to wake dh. Waiting for tramadol to kick in then I'll try again. Cats are very pleased to see me down here hmm

lostinwales Mon 28-Mar-11 23:28:07

Evening all may I please join the thread. <<deep breath>>
I am lostinwales and I have had a problem with my thoracic spine since I was 16, the best Dr's can come up with is I have an inflammatory degenerative disease of my spine but they don't know why or how to stop the degeneration. I have trouble doing pretty much anything for more that 15 mins at a time, laundry, cooking, walking, standing, sitting.....

My liver is becoming fried from 20 years of paracetamol/ibuprofen and currently I'm taking a drug for rheumatoid arthritis (Arcoxia 90mg) although taking this the same time as an anti ulcer medication hasn't helped a huge amount with the pain but it has given me the symptoms of a stomach ulcer sad. I LOVE tramadol but can only sit around smiling when I take it, mind you that helps with the pain!

This morning getting the boys packed lunches together left me gasping with pain and in tears that a) it hurt so much and b) I'm youngish and I should be out doing things not trying to time my shopping so I only do a little bit at a time. I am humbled by most of you on this thread coping with so much worse. Bodies can be such traitorous shits eh?

I would love to chat right now but as I have taken my evening coedine to help me sleep I will be slurring my typing soon, see you in the morning.

lostinwales Mon 28-Mar-11 23:30:15

Oh and PliezReleaseMe thank you for starting this thread, I am boring myself, let alone my friends, whining in RL so having somewhere to vent is brilliant.

hope you manage some sleep lostinwales. gnight.

lostinwales Mon 28-Mar-11 23:33:00

gnight OYBBK, hope the tramadol kicks in soon. (Is it a bit weird to have a brief moment of fandom and tell you I LOVE your weather threads blush)

awwww, thank you grin that's made me smile in real life!

helibee Tue 29-Mar-11 01:22:16

Hope you get some sleep lostinwales and you ohyoubadkitten The tramadol I took at 10pm hasn't helped so I'll wait till 2pm and take some more. I've also had extra dihydrocodeine and diphenhydramine but still in lots of pain : (

helibee, thats quite a hefty mix. I hope it helped. Not so much sleep, though the tramadol def helped with the pain. Never mind. A new day today.

lostinwales Tue 29-Mar-11 08:40:35

Morning! I had a lovely sleep as I'm super sensitive to Coedine and it knocks me right out! Can't take it in the day though if I want to do anything than doze and drool. I have to go and pick up DH's morning suit in for a wedding on Saturday, our nearest town is about 45 mins drive so I have the joy of driving, ouch and walking back to the car park carrying something heavy, double ouch. Combined with all my friends being excited that I got to go shopping without any children and I could happily knock their teeth out. They don't seem to understand 'no I didn't do any shopping for myself as I was nearly weeping with pain trying to stay upright'

helibee you must have the constitution of an ox! Coedine and Tramadol would have me drooling for days, hope you had some decent sleep.

rockinhippy Tue 29-Mar-11 11:33:28

Those of you sensitive to Codeine I'm wondering if you've tried half dose Co-codomol & adding 2nd half of the dose an hour or so later??

I ask as I too have problems with codiene - weirdly less problems the with morphine I have on repeat, though I don't like really it & do find it can make headaches worse, though again I found taking half dose worked better for me, some pain relief & able to cope as not as woozy etc, though still gives me a temporary headache

I had a fall last Oct, cracked a couple of ribs - @ the damned hospital of all placeshmm - A&E gave me co-codomol 500s for it, which was a Godsend at the time & weirdly I realised they actually help with my migraine too - nothing else i can tolerate does, but did leave me spaced out, but not so bad as the other drugs I have - I've now found splitting the dose as above gets passed the side effects & still gets me pain relief for general aches, & some nerve pain & migraine

Diazepam works best for me on muscle spasms & takes the edge of the TOS & other neuro pain too

I too am not keen on taking drugs, especially as I've already damaged kidneys, so manage as naturally as possible & keep drugs as a back up for when I want to get out & about & do stuff, takes the edge off so I can be more active - I do rely on Ibruprofen on a morning though not keen on that, but sinus swelling leaves me with real groggy tender head which again feels swollen as do my arms etc & effects my balance, vision etc, so I have to take a couple early in order to be in any state to even manage the short school run

I do find things like clary sage aroma oil, Epsom Salt & black pepper & ginger baths, paingone pen for localised pain, oxygen for cluster headache, tens machine for back pain, magnesium & riboflavin(vitB?) for migraine, & MLD massage & PMA can all help me cope as naturally as possible,

I now realise my old attitude of desperately trying NOT to take any drugs was a mistake, Pain itself is a stressor & stress in my case causes BIG flare upshmm (shite for an ex adrenolin junky like me, but c'est la viehmm)

& helibea I had to laugh at your comment as regards your Kids - when I was first ill & not knowing what or how to deal with it & dealing with a lot of stress, DD was vey young - I lost my voice almost completely for over 6 monthsshock M.E. still badly affects my throat/throat muscles in a flare uphmm - I was shocked that DD EVER learnt to talk - let alone be a very early talker confused - she did a lot of finger wagging & scowling though - as that was the only way I could keep her in line & let her know something wasn't allowed/dangerous etc - she still wags her finger if she's telling anyone off now - & she's 8!! ...LOL

herbietea Tue 29-Mar-11 11:56:37

Message withdrawn

herbie.
A lighted kindle is a very good idea. Might nick that one for myself. It's miserable creeping out of bed and sitting downstairs where it is cold so that I don't disturb dh.

rockinhippy Tue 29-Mar-11 13:01:59

I've a new tracker pad instead of a mouse if your hands are bad herbie I can definitely recommend them, gripping the old mouse used to set of my hands & put my neck in spasm, this is much better

good luck with your op, enjoy your lazy tv day

& yes OYBKitten I can relate to that too, though thankfully not often so cold here

Jealous of your reading though - not something I can really do anymore - get so foggy a few chapters down the line & I forget who the darn characters are hmm

PliezReleaseMe Tue 29-Mar-11 15:01:28

Hi everyone & welcome newcomers. I am so pleased that people are finding this to be somewhere that they can say all the stuff they don't want to say in real life. As lostinwales says, I bore myself sometimes, let alone anyone else.

Well after the excitement of finding I could drive, I was walking down the stairs and had a surprise attack of trapped wind - yeah, ha ha, farts etc - actually I get this from time to time and am doubled up with it, I think it's due to holding my body in tension to avoid pain. It took me by surprise on the stairs and I jarred my knee a bit. Between the knee and the tummy I had to take a tramadol and go back to bed feeling really guilty and ashamed of myself and like I'd let everyone down after the promise of a trip out. Tummy calmed down after a couple of hours (I couldn't even get off the bed to go down for dinner, which DH cooked) but knee still painful. I just lay there telling myself how pathetic I am. I don't often get like this, my GP put me on anti-anxiety meds before the op as I knew that the op might trigger me off.

Anyway I didn't go out again yesterday for various reasons & setbacks, then today I managed to drive everyone to work, school and nursery. Was looking forward to a rare day at home by myself & getting on with a sewing project I need to have ready in 2 weeks' time. I sat down with a DVD on and started sewing, but it was so hard to get comfy, I had to keep stopping & resting my leg and I had to use the wrong foot to operate the pedal so the thread kept bunching. After I finished hemming a skirt I thought I would stop for lunch, went into the kitchen and saw that it was 2:30pm and not about 12 as I had imagined. I didn't even notice the DVD finishing.

Unfortunately this has really started the tears off, I am looking around at all the bits of thread & fabric and not knowing how I am going to clean it up because I am so sore from the sewing.

I am supposed to go back to work next week and frankly I am bricking it.

Let's think of something positive to end on... I am keeping up the physio even though it wears me out and my leg now bends to about 110 degrees, which is a seriously big deal for me.

lostinwales Tue 29-Mar-11 17:42:29

rockinhippy tell me more about 'Epsom Salt & black pepper & ginger baths' that sounds fabulous. I use heat a lot to soothe my back although my consultant was quite startled just how hot I made it the last time I saw him. I try to use as little medication as I can as it never really takes the pain away and I've had bad liver tests in the last 18 months. Diazepam for muscle spasms sounds interesting, sometimes my whole chest is one big painful cramp and I go a funny shape and moan with the pain, DS's think it's hilarious but can be embarrassing if anyone else sees!

Don't feel bad pliezreleaseme if I jarred my knee like that I'd feel sick as well as the pain, yay for the physio and 110 degree flexion.

ArthurPewty Tue 29-Mar-11 18:12:54

what i need to know is how to deal with back pain?

i've never been a back pain person, just neck and migraines etc, but about 7 weeks ago i got new orthotics in my shoes and my back has been fried ever since, varying degrees of constant stiffness and pain, mainly on the right.

how can i deal with this?

Katisha Tue 29-Mar-11 18:14:14

DOesn't sound right Leonie - have you been back to whoever prescribed the orthotics?

ArthurPewty Tue 29-Mar-11 18:39:21

appointment is for 7 april with the podiatrist person to review the orthotics

it can have me in tears some days, today included

helibee Tue 29-Mar-11 18:42:23

Ha ha, def don't have the constitution of an ox. Just have an extremely low pain threshold and so often need lots of pain killers to even dent the pain : (

I did sleep well after 2.30am. My dad lives with dh and I so he took ds to nursery today. I also have a throat and chest infection at the moment so I'm feeling sorry for myself and sleeping lots! I wish I could drive as it would be easier to take ds to nursery but dh is worried as I can fall asleep like a narcoleptic grin

Herbie, I hope you find the kindle helpful. Dh bought me an iPad and its great for when I can't sleep. Its also so much lighterr than our old laptop.

Lostinwales, glad you had a good sleep. I can't go shopping unless I'm in the wheelchair so I sympathise with you having to carry suits as well!

Rockin, I also use TENS for my back and a massage when I can afford it is great for my back but if anyone touches my neck/shoulders, I just scream, it is agony : (

Pliez, sorry to hear that you couldn't get out or enjoy your dh's dinner. I know what you mean about trapped wind with holding body in tension. I'm in awe of anyone who can work with chronic pain. I can just about function myself and look after ds. I'd be an employers worst nightmare, always asleep or off sick grin

Leonie, I agree with Katisha, you need to go back to whoever prescribed the orthotics and see what they think.

herbietea Wed 30-Mar-11 14:34:47

Message withdrawn

frogmella666 Wed 30-Mar-11 14:46:45

i have a confession to make ladies.
i was in so much pain last night and this morning i took extra painkillers and a sleeper.
i waited until my dc were ready for school and then went back to bed. i have just woken up and realised dc will be home in an hour and i still need to tidy up and get something sorted for tea.
does this make me a bad mum?

lostinwales Wed 30-Mar-11 14:52:52

Kindle for mothers day! What an absolutely brilliant idea, roll on 3.30 so I can plant that in my PFB's brain, he is gadget mad too and the ideal person to mention it to DH. Sorry you are having a shitty day herbietea I am almost tempted to give my very first unMN ((hugs)) but I'm not sure how you are on being touched when you are in pain smile.

I am having a good day today as I've done very little this week, but we have a wedding at the weekend where there will be a lot of standing up and sitting properly and I know I need to pace myself or I'll be crippled before we even get to the food.

Feeling a bit of a fraud as well as I know that my pain is eased by lying down, especially as I take coedine and something beginning with d that's a muscle relaxant, I can normally sleep really well until 4 ish and then it's not so bad and I can get comfy with the correct amount of pillow. I don't know how I would hold on to my sanity if pain kept me from sleeping regularly.

lostinwales Wed 30-Mar-11 14:54:56

Just saw your post frogmella, I think if it means you can get through the evening now with the children home you are a great mother. I think I'd be tempted to take the sleeper just before they get home!

helibee Wed 30-Mar-11 15:28:16

Herbie, I am so sorry you are in that much pain. I know its very unMNet but I give hugs left, right and centre grin so here is a gentle hug for you.

Frogmella, you are not a bad mum at all. We do what we have to to get through the day. It would be worse if you were in so much pain or so tired that you weren't able to function. My ds is home from nursery but I shall be having a nap soon, hopefully it'll on spire him to have a nap too grin

ArthurPewty Wed 30-Mar-11 16:40:40

my back is hurting quite a bit today but not as bad as other days.

it didnt start hurting until after lunch - when i started walking and pushing the pushchair. i had a driving lesson this morning and it was fine...

KatyMac Wed 30-Mar-11 20:24:13

I am seeing a Rheumatology consultant for the first time next week.

I am on anti-inflammatorys

I imagine they will take a brief history, take some blood & then see me again when the bloods are back.

Do anti-inflammatorys reduce inflammation markers? So should I stop taking them so the consultant can see what my blood should be?

frogmella666 Wed 30-Mar-11 20:44:54

managed to tidy up and do something to eat for dc but i still feel ill.
when they came home they saw what i was like and told me to go and sit down(they can be sweet)
i think i am realy lucky they are now older and can do their own thing and they have all done catering at school so i know they wont starve but i still feel guilty because i should be doing it for them.
think i will have a hot bath take my pill's andgo to bed

helibee Wed 30-Mar-11 20:58:10

frogmella, please don't feel guilty. You are doing a great job and the fact that your sc told you to sit down, you having raised caring dc there

I know thats easier said than done as I often feel guilty too. My ds is very good with my illness and if I'm having a bad day he either cuddles up or plays toys at my feet whilst I sleep. But I do feel bad. It was my MIL who said to me that he is more caring than any of his peers and he is doing everything he was supposed to when he was supposed to, so not to worry. So I begrudgingly listen grin

Katy phone the consultants secretary and ask her what their protocol is as all consultants vary.

lostinwales Wed 30-Mar-11 21:12:48

Does anyone get annoyed when people ask if their back is better, not sure I mean annoyed but frustrated, I want to say it hurt last year, last month and yesterday and it damn well hurts now it ain't never getting better until someone invents a new spine for me like the Queen of the Borg in Star Treck!

Sorry, I'm having a grumpy evening, was okish until I took DS3 to pick up his brothers and he needed a bloody big push helping hand up the hill. Followed by standing by a chilly pitch watching the older boys play football and I'm unable to sit still or get in a vaguely comfortable position. It's not the pain so much that makes me want to cry but the fact that I'm mid 30's and helping my toddler and watching football has left me crippled, it's not fair <<stamps foot and twirls pigtail>>

KatyMac Wed 30-Mar-11 21:30:44

Really helibee?

Won't she laugh blush

confuddledDOTcom Wed 30-Mar-11 22:48:04

lost, I know what you mean. So many stupid comments! I hate the "what've you done?" "what've you done this time?" (I've had these for 2.5 years!) or "what've you done to your leg?" type comments. FTR it's not my leg, it's my back/ pelvis and hips, the simple answer is "nothing" but would you really like me to answer that question?

Oh and not to forget "you're brave" when I'm out with my children!

helibee Wed 30-Mar-11 22:57:11

Katy no she won't laugh, I promise. Its better to find out as you don't want to stop taking your meds if the consultant doesn't feel its necessary for the tests

lost I know how you feel. Sometimes I get people asking on a weekly basis, "how is your health keeping these days?" well since the last time you asked, NO different. I am in pain 24 hrs a day. Believe me the day I'm not I'll be shouting it from the rooftops, in fact I may even take out a news bulletin grin

confuddled yes the you're brave comments bug me too.

Hee hee we're a cheery lot tonight wink so to add to our woes, my back, knees and throat are killing me and my restless legs have started, which just makes my knees worse

Anyhow am going to try and sleep, night all

shitmagnet Thu 31-Mar-11 03:40:48

Great news re the rheumy Katy. I wouldn't worry about the anti-inflammatories effecting your markers too much (even methotrexate hardly put a dent in mine wink). Just tell the rheumy what you are on. Write everything down before you go in, full history etc, but try to keep it concise and relevent. Good luck!

AtYourCervix Thu 31-Mar-11 22:55:21

i seriously hurt this evening.been on a study day so had to sit mostly. even with staggering to my feet and keeping moving i now feel shocking. i hurt from the ribs down.

ouch.
i may have to take some drugs which i know will make me itch. fuck.

AtYourCervix Fri 01-Apr-11 10:36:27

and now my right big toe is numb. that's not good is it?

KatyMac Fri 01-Apr-11 22:32:13

How are you now?

Which drugs make you itch? (Katymac scratches surreptitiously)

AtYourCervix Fri 01-Apr-11 22:40:04

it's not so bad - been at work so going all evnig but still a bit crap.

I can't take codeine or tramadol. they make me itch madly and puke and knock me out for days.

back to the doc next week.

KatyMac Fri 01-Apr-11 22:47:13

I've had a good day today so no codeine; getting so tired of it all

Glad you got through it

helibee Sat 02-Apr-11 23:17:26

Ow ow ow ow ow

My knees are agony. Ive been helping my dad unpack his storage unit into our garage and house and ow ow ow I'm paying for it. It was only an hr

Mucho tramadol and co-dydramol for me tonight then. Really hope it eases by tomorrow as want to go out for dinner.

Atyourcervix, when I first took tramadol intermittently rather than frequently it used to make me itch like crazy too. It is fine for me now. I hope you find some pain relief that helps.

Katy, glad you had a good day yesterday

Ds has made me a surprise at nursery and said to me yesterday "mummy, look what I made you, but you mustn't look as it's a surprise my teacher telled me it's because I Love you so much!" grin all I've asked for is a tidy house and to spend the day together, anything else I'm not fussed about. Hope you all have good and pain free mothers days tomorrow x

KatyMac Sun 03-Apr-11 19:44:21

How are you today?

PliezReleaseMe Sun 03-Apr-11 21:04:40

Hope we've all had nice days today, perhaps not pain-free, but maybe with a few more distractions than usual?

I slept like a baby last night - that is to say, I woke up whining every two hours grin so it was nice to cash in my Mothers' Day lie-in this morning.

I* *have a* *suggestion for the continuing use of this thread, bit of a manifesto if you like.

I propose that we do not apologise for whinging. This thread is the safe place to whinge that you go to when you don't want to burden others with your story. We come here because we are NOT whingers "in real life." I am not banning apologies, but... pointing out that they are not necessary here.

So please everyone, whinge at will. Repetition is also encouraged and expected.

If someone feels better by whinging about the same thing over and over, PLUS contributes to the peace of mind of their children & families by not bending their ear & bending ours instead - then that's a pretty good use of a thread I reckon.

I'll start. <elbows everyone out of the way gently to take centre stage>

Did I mention that my joints hurt so badly that I stoop most of the time and the one (recently operated on) knee is eye-wateringly painful? Oh I did? Well tough, I'm going to whinge about it again because it is still here today and I am still pissed off about it grin

AtYourCervix Mon 04-Apr-11 08:17:28

<<Gently shoves Pliez over a bit>>

I may have mentioned my back once or twice but you know what? I'm going to again!

I too slept like a baby last night. Every time I want to roll over I wake up. It hurts. Sometimes I make little whiny noises too.

Waiting for Dr to open. I will be making an apoointment today.

KatyMac Mon 04-Apr-11 11:09:11

Not having a good day & it's my own fault

I found online that my anti inflammatory will affect my blood tests so I have stopped taking it.

Any questions about the appointment are to be directed to my GP (who isn't ideal tbh)

lostinwales Mon 04-Apr-11 11:35:40

My back is farking killing today and I can do little of any use but as I spent 14 hours of the weekend in the car and the bits in the middle wearing 5 inch wedges I can only blame myself. I went to a family wedding, it was a fantastic day and the huge shoes made me feel gorgeous so I don't care! Every twinge is making me smile because it reminds me of how lovely it was spending the day gossiping with my cousins and scaring away boys who wanted to talk to us by being a coven! My blinking knee is hurting too (osteochondritis dissecans as a child and teenager, I swear if I was a horse they would have shot me by now!) but still I don't care!

Apologies for not whinging grin normal service will be resumed tomorrow!

CMOTdibbler Mon 04-Apr-11 11:50:48

Hello, I'm joining in so I can whinge about my blardy arm - I have complex regional pain syndrome, plus just a generally b*ggered arm (in the exact words of my consultant) from the elbow down. It has been a right git over the weekend, and I just can't get comfy. And I haven't done this mornings physio yet..

AtYourCervix Mon 04-Apr-11 12:28:04

got appointment for wednesday evening. now, will he listen to me and what can he do?

I can function, walk around, work etc but i've reached a sort of plateau and not getting any better.

I can't sit for more than half an hour without it hurting and me having to move - which means study sessions at work are agony and days out more than half an hour away are impossible.

I've cut bakc on painkillers but still need them either end of the day and sleeping is hard.

I've been seeing an osteopath for weeks (£££££££) which helped at the beginning but not any more.

So what do you think the next step is at the docs?

you are very kind pliez - I find it hard to whinge even here - I have built up some really high ''I'm fine walls'. Ridiculous today. Been in tears through utter utter exhaustion. Muddling my words, getting lost doing basic tasks and both times that I was asked how I was it was all smiles 'I'm fine, how are you?' and getting honest responses back about why they were not fine.confused

helibee Mon 04-Apr-11 22:28:41

Just to say hi, I'm off to spleep, am exhausted. Night all x

herbietea Mon 04-Apr-11 22:41:31

Message withdrawn

lostinwales Tue 05-Apr-11 09:17:43

Liver enzymes are up and I have serious indigestion so I'm off meds for a while, important I think to live for a lot longer than sleep (don't quote me on that next week!) Not a lot of sleep for me last night then! Never mind, I've got a quiet week planned and I'll sleep even less if I'm worried about frying my liver and dying. Ended up climbing in with DS3 as he makes an excellent hot water bottle and distraction! <<must remember he is a child not a teddy bear emoticon>>

Sorry your pain is so bad herbietea, it's so frustrating when they can't put bones right, I don't think most people realise how primitive orthopaedic surgery is, there's no magic cure for most things. Can you teach me how to knit though? I have always wanted to and I have wool and sticks needles(?) but the woman on the internet is not helpful at all.

Poor arm CMOT (best name on MN IMHO!), IIRC you had an accident when you were younger didn't you? It must be so awful to have a limb let you down. A beautiful friend of mine has just had surgery to prepare her skin on her calf for an amputation in June, she had a horrible accident a few years ago and now the decision is to remove the lower leg, even if she has phantom limb pain she can get better funtionality with a prosthesis that the mess she has now. What a decision to make. We are trying to come up with a better word than 'stump' if anyone can think of one?

blush went to see gp about various symptoms and came away feeling very silly cos I've been trying to take my anti-inflamms as little as possible (cos I hate having to take omeprazole with them). GP told me that I'm going to have other symptoms if I'm not sleeping because of pain. Feel like an idiot because intellectually I know that but I'm so over tired and feeling unwell that I'm just not thinking straight.
so if you see me whinging please ask me if I'm taking the meds that I'm supposed to.

KatyMac Tue 05-Apr-11 21:36:54

OYBBK - have you taken your meds??

Lostinwales - I can knit; that is I have the wool & the needles & I can almost follow a patten. Except it always turns out wrong sad

grin I have KM. thanks dh and I looked cack to when I started sliding down and it was about 3 weeks after but it was such a slow slide I didnt really notice how bad it had got.
Taken my anti-inflamms and full dose of codeine and full dose of paracetemol. Codeine is a bit of an emergency stop gap for me. I hate it more than tramadol (looked in the packet, was prescribed it a year ago and only 4 had gone!) Going to be really thick headed tomorrow but if I take it for a day or so while the anti-inflamms get going it should help.

confuddledDOTcom Tue 05-Apr-11 23:56:33

Ah the longterm PGP... Mum keeps going on at me about it, she doesn't believe that it can sometimes just not get better because she knows two people who were in wheelchairs because of it and now not. Wheelchairs are no indicator of how long it will last! I'm getting worse though, I now have sciatica in my right leg, not the painful kind, the "my leg has been replaced by a prosthetic" type! My leg doesn't really hurt and they can do more to it without pain than they can my other leg but I have less movement in it when I move it myself (if that makes sense).

My 4 year old was stropping about going to bed tonight and I tried reasoning with her, called Dad who was in the toilet so couldn't carry her (wish he hadn't said it and said he was coming - men!) so eventually I picked her up and carried her to the top of the stairs. I'm in so much pain now!

Mum said the other day she'll help me fill in DLA forms, I've been meaning to get it sorted for ages but it's so daunting!

KatyMac Wed 06-Apr-11 21:41:29

My first hospital appointment tomorrow

What do you reckon, a blood test & come back in a month?

probably KM - might also check what you are taking and tell you to take it more. Hope it goes ok today.

KatyMac Thu 07-Apr-11 08:25:03

Thanks - I am stressing a bit

'Go away & live with it' is my nightmare; I mean live with what? I like a name

herbietea Thu 07-Apr-11 08:52:25

Message withdrawn

Had an accidental rant here its the small things that tip you over.

herbie.

KatyMac Thu 07-Apr-11 12:29:13

I have Fibromyalgia and Hypermobility

I'm still working out what it all means

Did they give you a treatment plan KM?

KatyMac Thu 07-Apr-11 15:31:12

Take more co-codamol & less naproxen
Referred to a physio
Hip Xray for possible referral to bone man
Blood tests as I don't quite fit in the right boxes

But I don't have inflammatory arthritis

Doobydoo Thu 07-Apr-11 15:42:52

Haven't read much yet but thread title drew me in toogrin
Just back from docs who is querying M.E on top of vestibular migraine and am having test for Rheumatoid Arthritis...they don't think it is M.S.Feel sorry for myself am knackered and agree re trying to push through the pain,tiredness and brain fog.Back to read posts.Thinking of you all[in advance!]

Did he say why you should take less naproxen KM? It sounds like they took you seriously which is good
doobydo - hope you get some helpful answers soon.

KatyMac Thu 07-Apr-11 22:21:40

OYBBK - chatting about it here

But I think because if I can cope with Co-codamol I should & use naproxen as a super pain killer.

shitmagnet Thu 07-Apr-11 22:54:23

Thought it sounded like fibro Katy... one of the things with RA is that it flares really bad during the night and wakes you from sleep (due to the hormone changes during the night). Hope your bloods come back clear of arthur Sorry about the dx though, no picnic

shitmagnet Thu 07-Apr-11 22:55:53

Did the rheumy test your pressure points? Sorry if on other thread, trying to get kids off to school grin

KatyMac Thu 07-Apr-11 22:57:40

Oh yes & oddly the worst one was a joint I have little pain in; or at least I did. After picking myself off the floor it has ached ever since

shitmagnet Thu 07-Apr-11 22:59:42

Hi Doobydoo... wow, are you me? Cut and paste from my postnatal thread, soz for the crass language blush

In a nutshell, I started feeling very weird on the meds I was on, so stopped. Was good for a couple of weeks then the weirdness started up again - extreme nausea, dizziness, shaky, yuk. Ended up in hosp for rehydration hmm. Had scopes, scans, mris, the lot - dx of vestibular neuritis, my left ear isn't functioning in the balance department (either viral or rx to meds). Still feel weird but my brain is compensating now so not so intense. However RA is flaring hard, and have bloody muscle twitches galore which is making me paranoid about MND confused. Due to see rheumy next week, and a neuro in a few weeks. It's been a pr*ck of a year, but at least I've lost a few kg through having no appetite grin.

Does anyone else here get muscle twitches? <paranoid>

shitmagnet Thu 07-Apr-11 23:00:52

Great to get some progress Katy, well done

KatyMac Fri 08-Apr-11 21:22:13

I suppose it's progress; it doesn't feel much like it

helibee Sat 09-Apr-11 00:28:47

Katy, welcome to the fibro club. On your other thread from a few months ago, I had thought that it was but then when drs came up with the arthritis I just thought I must see fibromyalgia everywhere grin

Hope you work out which meds suit you best. I find tramadol and either co-dydramol or dihydrocodiene work best for me. Ask if you have any questions. I've had it for 10+ years now

Anyway i had a lovely day with ds in princes street gardens in Edinburgh in the glorious sunshine but then ds wanted to go to the castle. It just about killed me getting to the middle of the royal mile (no way on earth could I have walked that hill) but felt so bad and mad at my illness that I couldn't take ds up the hill anyway we decided to go to holyrood park instead and I watched him pretend to light a campfire incase we got snowed in grin

My knees are agony now and I can't sleep! Need more meds, but can't take any more for 1hr.

I'll catch uo with thread tomorrow but hi to new people and hope everyone has a good weekend.

Ohyoubadkitten, did the osteopath help your back after the bruising?

KatyMac Sat 09-Apr-11 07:20:33

Well it's been proposed a few times on MN

I'm not sure where I'm going with it atm; do you find hot baths help - I'm supposed to have 2 or 3 20 minute baths a day

helibee, thanks for asking Kind of, he doesnt help with the arthritis side but he does help with the grumpy muscles that tend to seize up around it.
Lots of unhappy joints at the moment despite me being a good girl about my meds. Still I need to give them time to get on top of the inflammation.

has anyone seen a physio with regards to getting an overall useful exercise program? I'm thinking about booking a private appt with someone who will show me some useful stuff that I can do without aggravating my joints more. Is a physio the right person for that?

helibee Sun 10-Apr-11 01:46:44

Katy, a side effect of my fibre means that I can't cool myself down. My bodys thermostat is broken and so I would struggle with that many baths a day, also have very dry skin. I was given hydrotherapy a few years back but I collapsed with heat exhaustion and was rushed to A&E from outpatients and I was unconscious blush so needless to say I didn't finish the course grin

I actually find heat packs on my knees/back/shoulders etc better personally and a bath once a week (honest I shower in-betweengrin) or if my knees are very sore it does help them. you'll just have to play around to find combinations that work for you. I also like my TENS machine and we are saving to buy an osim massage chair as have had use of one before for a month and it was fab.

Ohyoubadkitten, I did see a physio a few years ago and he prescribed pilates as he said that my core muscles were weak which meant that I was placing unnecessary strain on my external muscles and joints. He did a 6 weeks programme with me and I still do it now if I'm having a good day. I just use a 10 min solution pilates DVD that he gave me and it has helped with the extra muscular pains in the same way that massage helps. My ref feral was through the GP.

My next door neighbour has mild fibro and she's a physio, she says that any gentle stretching and toning exercise is good with all chronic pain and as long as you don't overdo it or collapse in a heap though exhaustion (which would be me most days) then to just do what yiu can when you can. She mainly recommends brisk walking as a cardio exercise that also helps strengthen the body but obviously that all depends on where your pain is worse etc.

Just realised what a long post that was. Anyway my knees are still agony and my hip joints, ivejust taken some more meds so hoping to sleep soon.

Thank you helibee, that was very helpful hope you managed some sleep.

KatyMac Sun 10-Apr-11 20:29:32

I'm the opposite I can't keep warm; my thermostat never really worked

Pilates; here I come & swimming I understand hmm apparently it could take upto 6 months to do 20 minutes exercise 3 times a week (what I do with my current exercise I don't know)

The bath in he morning helps with stiffness & pain; the one in the evening less so but it does relax me for sleeping

I've got lots of learning to do

HMS and FIbro with a dose of Facet Joint Arthrosis thrown in here. First two for nearly 20 years.

Can i creak and whinge along too please?

Fibro ladies get yourself onto Lyrica. Trust me on this!

confuddledDOTcom Mon 11-Apr-11 17:50:07

Not so much a pain winge but wasn't sure where else I could put this. Had a blood test today, sat in the waiting room feeling light headed - I'd just done the CO2 breatheliser thing - and when I got called my blood refused to flow! The first arm was totally useless, it didn't bleed when she took the needle out and hasn't even bruised. The second arm was really slow to fill. It's got me worried now because my blood is obviously being thick today (probably my own fault for not being better with the injections - and I'm stressing about having another TIA confused

When do you get the results CMOT?

helibee Mon 11-Apr-11 19:33:35

Hardhatdonned. I tried Lyrica and dissent get on with it at all, neither did a coulee of others I know. I guess it's like pain killers, it works for some and not for others. Glad you find it helpful.

Confuddled, my blood goes like that sometimes. I hate having to get blood tests done as I always pass out! Hope you get the results quickly.

I'm very sleepy today.

KatyMac Mon 11-Apr-11 19:45:27

Whinge, whinge, pins & needles, pain, whinge, whinge

confuddledDOTcom Mon 11-Apr-11 21:10:38

I've had it a few times so wasn't surprised but it usually goes the other way - my blood stops flowing then I go faint. It's the blood objecting to being drawn and going thick, obviously that has an effect on how well it goes through the brain so you get lightheaded at the least, pass out or TIA at the worst. I once had 11 vials up to the ones that look like tobassco bottles and both arms rebelled, as she was trying to get my second arm to work I went!

KatyMac Tue 12-Apr-11 22:21:48

How is everyone today? Enjoying the sunshine?

I am but I find the evening difficult

Today, bizarrely, my elbows hurt; both of them, quite a lot

Poop

i'm a bit more comfy - slept ok and moving around better. hooray!

KatyMac Tue 12-Apr-11 22:27:42

Oh good, sleeping is great isn't it

sleep is the best thing ever invented grin how are you doing today?

KatyMac Wed 13-Apr-11 10:19:08

Left fingers, elbow & shoulder bad

Right elbow better

How about you?

Sorry about your left arm being so uncooperative.

I'm off to the gp with a bee sting on the bottom of my foot that is getting worse instead of better. dd has got to the point I think of mentally rolling her eyes at me and I don't blame her!

KatyMac Wed 13-Apr-11 11:12:03

When I was really bad with CFS a bee/wasp sting stopped my leg working shock

oh blimey. <looks sternly at foot>

KatyMac Wed 13-Apr-11 14:11:47

Joins OYBBBK looking at foot sternly

Its not working, nor is the antihistamines and cortisone. We have to stare harder. I have 36 hours to get it better.

CatPower Wed 13-Apr-11 16:30:36

Can I join in with the chronic pain whinging?

I have hip dysplasia, and am on the waiting list for a Ganz osteotomy. My surgeon is lovely but has said the wait could be long, meantime I'm pumped full of Lodine (one in the morning) and then at night two 10mg of Amitriptyline at bedtime. I have also been on a lot of Tramadol, but swapped to Amitriptyline as the Tramadol wasn't having a huge effect anymore.

Whilst the Lodine seems to take the edge off the pain for the morning, by the afternoon I can feel my hip clicking and my knee and shin burning. There's a constant feeling of something being caught between the ball and the socket in the joint - surgeon has said that's the feeling of my thigh rubbing the edge of my hip socket. Not a nice thought.

Anyway! I feel bad moaning to DP and family about my dodgy hip. I know in the grand scheme of things it's not serious in the way some illnesses are, but it's having a negative effect on my life, and good god it just hurts!

that sounds horrid catpower, its rotten that you are having to wait for the treatment that you need. Chronic pain touches so much of your life and most people dont realise that.

herbietea Wed 13-Apr-11 19:41:29

Message withdrawn

herbie I'm really sorry. Can you have a friend with you when you ring and ask if you can actually go in for another talk. Take a friend who will advocate for you, it can be really hard to stand up for yourself. Remember that ultimately it is your body and noone can make you do anything you don't want to do. A consent form isnt a bidning contract. {{{hugs}}}

herbietea Wed 13-Apr-11 20:23:02

Message withdrawn

you aren't moaning, you are saying how it is and its pretty rotten for you at the moment. If you can be really honest abot your fears when you speak to them hopefully they will be able to alleviate some of them.
I hope you manage to get some sleep tonight.

helibee Thu 14-Apr-11 02:16:07

Oh herbie, that's so rotten for you. I hope that your consultant will listen to your fears. I can completely understand why you do not want the injections if it put you in bed for 3 months last time. Does this consultant know about that!

I hope that speaking to them will calm your fears and reduce some of the pain. I'll be thinking about you.

Katy, how are your elbows?

Catpower, Oh you poor thing, that sounds very painful. Don't worry about moaning about the pain. That's what we're here for. I often feel the same way as you, that there are people out there dying and seriously ill. However chronic pain and the effect that it has on peoples lives can never be underestimated. We are in pain all day every day. Most people struggle to be in pain for a few hours, let alone 24 hrs a day for years and not knowing if there is an end in sight. So moan all you want and we will send you gentle hugs grin I'm so very unmumset in my hugging wink did your consultant give yiu any idea how long the waiting list is?

I managed out to the garden centre with ds and my dad for MIL's birthday. I am very close to her so it was lovely and we had yummy fresh fruit scones and watched ds go on all the rides whilst we sat in a garden swing. I was only out just over an hr and sat down for a good 50 min of that but am suffering now with my knees and as a result can't sleep. I was going through an insomnia phase but I thought it was over but after this last week I'm not so sure. These phases can last for a few months at a time and then I can sleep again (pain related awakenings aside). Unfortunately my level of fatigue does not subside no matter how much or little sleep I get. But I'm less likely to need a long nap if I'm sleeping better.

Anyway sorry for rambling, I am VERY tired. Going to try sleeping. Night all

KatyMac Sun 17-Apr-11 07:03:08

Hi everyone

How are we all today?

My elbows are so-so my hips are worse; I think I have wandering pain grin

pantaloons Sun 17-Apr-11 07:41:01

Is it too late to say "hi"?

I'm 29 and have been in pain since having SPD 4 years ago. It eased off slightly after birth, but then something went with a bang when I was carrying ds up the stairs. After 40000 doctors opinions, but no actual scan or x ray I paid to go and have an MRI 2 years ago. This indicated a cat scan was needed. I was brassic by then so waited 7 months for an NHS appointment, then another 5 months for the follow up which took me to 17th April last year. The consultant said I have previously broken my spine at the base in 2 places. (Not a clue when.) One side has healed, but the other has made too much bone and joined some facet joints and nerves together. Joy! Soooo, he said my main option was injections in the area and maybe a nerve block if that works.

12 months on I'm still waiting for the injections. I was told at Christmas they won't fund them and someone should have told me in August! Then DH kicked off and they would do them, but at a private hospital, then it was too complicated for them and now after complaining I should get a date this week (please God!)

In the mean time I live on Naproxen, 30/500 co codamol and Tramadol. And to top it all off not only have I had to give up my business as I can no longer stand for more than 5 minutes or lift or bend, but I have started having seizures. This I am told, is Epilepsy so I can no longer bastard drive either!

Oh and I have recently started having doubleish vision, which the optician says is the muscles around my eyes not working. He's not sure why, but has put prisms in my glasses. This has made no difference what so ever and I have to go back on Tuesday.

Anyway, "HI!" and if you read that lot you are a better woman than I am!!

confuddledDOTcom Sun 17-Apr-11 07:53:14

I'm in hospital because I was having tightening on Friday so they're getting steroids into me - great fun, hope baby appreciates this! Last night they found me an electric bed which is brilliant, I can get up in one go, my neck isn't stiff and my back isn't hurting (apart from a knot on the edge of my shoulder blade lol) I'm wondering if I can fit the bed and table into my bag hmm I'm liking the table I can eat high enough that I don't have to bend and force a foot into my ribs or hurt my back!

Mandy2003 Sun 17-Apr-11 17:30:29

Hello, I'm new here too! I happened to see Helibee's post on the AIBU thread regarding the wedding venue that would not provide space for the OP's disabled friend to rest during the celebrations. I noticed that Helibee has Fibromyalgia/CFS - so do I.

I'd like to ask a question: I take Tramadol and Codeine alternately (one prescription for one then one for the other) but I wondered a) whether it's safe to alternate those meds during the same day and b) I find if I take either after 9.00pm then I suffer dreadfully from insomnia - can't switch off and toss and turn all night.

Any views or experience please?

helibee Sun 17-Apr-11 18:44:54

Hi Mandy, I take both tramadol and dihydrocodeine or codydramol. I take tramadol every day but not codeine based every day. The days I need both I leave about 2 hrs in-between. I couldn't not take the tramadol as I find that most helpful at regulating my background pain and then the codeine based for topping up pain releif. How much of each do you take?

How long have you had fibro/CFS for?

Confuddled, the electric beds are very good. I tried one out at the grand designs show that had a tempur mattress on top, I didn't want to get off grin hope you and baby are ok and baby doesn't come yet. How many weeks are you now?

Pantaloons, wow you poor thing, you really sound as though you have it rough. I can't believe that they haven't done anything about it before now. I really hope that you get your appt this week and now epilepsy on top of everything else, you are a brave woman.

pantaloons Sun 17-Apr-11 19:22:24

helibee not so much brave as a total whinger at the minute, but I'm hoping to get sorted out a bit over the next few weeks.

Mandy, I find the tramadol make it hard for me too sleep and try to take the Naproxen or cocodamol towards tea time. The pharmacist recently told me I shouldn't be taking the tramadol and cocodamol together. His exact words were "how do you get up in the morning?" But the doc who prescribed them said it was ok.

I'm off to price up an electric bed!!grin

confuddledDOTcom Sun 17-Apr-11 23:19:07

I'm almost disappointed to be home! It was great fun and amazing how much it takes the pressure off the pelvis and back. I'm going to put my order in next time I'm in triage! Apparantly they belong to the postnatal ward but because people go up and down from antenatal and postnatal wards all the time they get mixed up, they would have rung for one for me if they hadn't had a free one on antenatal. Only down side is they don't stay dressed and you end up on bare mattress lol

I went in at 27+4, I'll be 28 weeks in the morning. This is actually a little late for me to be starting all this! I had my first at 20 weeks (who obviously didn't survive) second at 31 weeks which was totally unexpected as they said it was a one off and I was well past the previous stage, third one went into labour at 23+6, got the steroids and drip to stop things, spent the next 11 weeks in labour with her, delivered at 35 weeks.

helibee Mon 18-Apr-11 00:02:13

Pantaloons, you are definitely not a whinger and that's what we're here for anyway!

I take my tramadol as follows . . .
.50mg 6am
.100mg 2pm
.50mg 8pm

If in a lot of pain then I'll double uo the 50mg doses and take extra doses at 4 hourly intervals. I then take codeine based pills at 4pm and 10pm if I need to. I personally don't find they interfere with sleep but I go through periods of insomnia anyway, it's just a part of my illness. Tolerance to the meds though can sometimes cause insomnia.

Confuddled, fingers and legs wink crossed that baby stays put till time. My cousin has an irritable uterus and with all 4 pregnancies she was in actual labour from 21 weeks. They could see on the monitor and feel her contracting. Thankfully they weren't productive enough to do anything hut they did steroids and stitch for her too.

I've been very tired today. Then just before bed ds decided to spill blackcurrant all over his toys!!! Then he took of his clean pyjamas, dh thought he was helping but went overboard with the carpet cleaner (picture a very frothed up carpet and toys) and i looked around and I noticed all the mess in the conservatory and went into a cleaning and a <don't talk to me if you know what's good for you> frenzy hmm grin so know my knees are even more sore! Nevermind, I'm off to bed, night all

CatPower Mon 18-Apr-11 14:25:57

I'm going back to my doctor, the amitriptyline makes me soooo drowsy the morning after I take it at bedtime. Find it very hard to get up when my alarm goes off, then when I do eventually get up I'm groggy and slow for a couple of hours afterward. I'm going to try and see my GP this week to get either more Lodine or Tramadol again.

Not seeing my surgeon until May 19th - seems like a lifetime away.

pantaloons Tue 19-Apr-11 07:46:35

The PALS ldy rang yesterday and asked when I was going for my appointment. Which was a bit?!?!? Seeing as she is the one who is supposed to be organising it. Apparently the appointments lady was supposed to ring me 2 weeks ago so PALS is going to chase it up (again).

I'm going to the opticians today and an appointment for neurology came through for the 31st May. I'm guessing the scan and eeg confirmed epilepsy as when I was having the eeg, the tester said if the results weren't clear I would have to go for a sleep deprivation test and I was never recalled. So, with a bit of luck I will get the goggles sorted, the epilepsy meds and the spinal injections over the next few weeks and be a new woman.

That's the theory anyway.

Hope everyone is ok and plodding along alright.

Can I join you ladies? My pain is not nearly as long standing as yours but I am guessing that we are not in a competitive pain competition!

Have been off work since November when I flew to Edinburgh for work. The next day my neck had started stiffening up. Since then I have had:

Stabbing pains in neck
Pain in T7

Has now changed to:
Pain in shoulder
Heavy tired dragging feeling in arm
Pins and needles in arm
Grip reduced in strong arm
Now have purple hand and both feet
Reduced pulse in said extremities
Blisters on feet
Freezing cold hands and feet - wearing ski socks despite the weather

I luckily have private medical insurance and I've had a neck MRI and XRays, cortisone (allergic to this and had reaction), can't take Amytriptiline 10mg as I had the most terrible tinnitus from it, around 40 sessions of physio, EMG tests (clear). Sick pay ends on 9th May!

Physio thinks that I might have thoracic outlet syndrome and am back to see the neurologist tomorrow to discuss it. If I do have it, it is an operation to remove the 1st rib with horrible looking recovery and am v. scared!

pantaloons Tue 19-Apr-11 15:39:15

Sounds like you have a double edged sword Ben10. As they think they know what it is = yay. But it needs a nasty operation = boo!

You are lucky to have your med insurance and it's certainly something I wish I had. I don't envy you your syptoms though. It seems like you are having a really tough time of it. Good luck with the neurologist, let us know how you go on.

CatPower Tue 19-Apr-11 16:26:47

Oh how I wish I'd taken out BUPA when I was working in those halcyon days before pregnancy, stretchmarks and 4am feeds. I'd have had my periacetabular osteotomy (not for the squeamish) by now rather than being on so many pills I rattle like a charity tin. I'm trying to keep up with pilates at least three times a week (in order to shift the fold of flab/loose skin at lower stomach/hip level) but dammit it hurts. I know I shouldn't be moaning as it's all for a good cause/no pain no gain etc, but why can't I just be normal and able to exercise by running (which I did before, did a 10km race before I found out about my dodgy hips) or going to the gym or whatever.

<sigh>

I'm having one of those days where the next appointment with my surgeon seems forever away, and being given yet another 100 pack of Tramadol is more than a little disheartening.

God I'm being a self indulgent moanbag today.

Ben10 I hope your appt with the neurologist goes well tomorrow. If you do end up having to have the (rather scary sounding) operation then we can compare scars/morphine doses! (I'm trying to find a silver lining in anything and everything!)

perfumedlife Wed 20-Apr-11 12:36:33

Hello everyone, can I come in for a moan too? smile

I have Bupa cover Cat but, whilst it covered me for my graves disease (thyroid) and the op almost killed me the disasterous op resulted in fibromyalgia which is not covered. Seems unfair to me. I paid to see a rheumatologist but it wasn't enough info.

Amatriptyline making me drowsy all day too, stopped working on the pain aswell. Now trying to decide if the Gabapantin is worth a go. Taking tramadol rarely as I seem to get bad palpitations. Or is the fact I havn't slept in six days something to do with it?

Am fed up. Getting stabbing pains in my sides, back and have a dead left arm. Last month was a good month too. If only there was some warning system, I could plan my life better. Feel like life is passing me by. My mum rang and suggested a rake around the charity shops tomorrow looking for vintage tea pots for her garden fete. I panicked at the thought of making that commitment. That's depressing.

Anyway, feel better for getting the moan over and finding you all x

Hello ladies, I'm back and disappointed......

Another MRI scan booked for next week and consultant the week after that. I know it isn't a long time in NHS terms but 6 months and still don't know whats wrong with me The consultant said that the last MRI 4 months ago didn't show any extra bone that could be causing this pain which feels like someone is standing on my collarbone area constantly. Now have an added extra symptom of feeling as if I have a tablet stuck down my throat all the time!

Got prescribed with Imipramine which apparently have fewer side effects than Amytriptiline Perfumedlife. We shall see........

As for private medical cover angry. When I called to get authorisation for the MRI the "lovely" adviser told me that as my condition was chronic they might not cover me any more. By that they mean that I had unrelated whiplash in 2006, physio/MRI for lumbar disc joint degeneration in 2007 and now this neck/ shoulder/ arm pain since Nov 2010. As the spine is counted as one area, apparently all of these conditions are one claim angry.

Am trying to keep calm with it all in the midst of going through redundancy consultation in the last month where I kept my job, sick pay about to run out, DS being assessed and DXed with SEN and fighting with the school re said DS. And now to top it all off I can't even drink on my new tablets sad

CatPower Wed 20-Apr-11 19:56:43

Have some un-Mumsnet HUGS Ben10 and perfumedlife, sounds like you need them! So sorry to hear about your troubles with everything Ben10... waiting feels so much longer when you're trying to deal with pain and medication. Hopefully the MRI and consultant will shed some light on what's causing so much pain... and perfumed I really hope your symptoms ease up on you. I have an acquaintance with fibromyalgia and I don't know how you cope, I really don't.

I'm not taking Amytriptiline anymore, was making me scarily groggy in the mornings which wasn't helpful when trying to get DS ready for nursery etc. DP is being a saint and doing schoolruns etc when he can fit them around work, but right now it feels a struggle. His work have said that after my op he can work from home which is fantastic (would be bed-bound apart from physio visits otherwise) but I don't want to put any additional pressure on him. <sigh>

canei22 Wed 20-Apr-11 20:04:23

I would like to join in too. I have calcified tendonitis in my left shoulder recently diagnosed but been suffering for 2 years. In the past 2 weeks I have the same pain in right shoulder!

The painkillers have inflammed my liver and I was told last week after a camera down the throat that my stomach is bleeding.

So I am not supposed to take any! So am p off. and in pain and cant sleep with the pain that goes on all night.

Am having an amitriptyline tonight although they make me tired and spacey all morning.

confuddledDOTcom Wed 20-Apr-11 22:42:18

They think my body believes that 4lbish is how big it needs to cook babies to, my youngest was "OK" because she was IUGR so she didn't get evicted till later as I didn't realise she was as old. It's not exactly connected to the Hughes Syndrome but bit of a spin off from having had a natural labour so early the first time.

I've had scans through the last three pregnancies to see if I have an incompetent cervix but never needed a stitch. They've recently swapped from IC scans to IUGR scans. Is it too late to just adopt? confused

I need to find someone who is willing to do my back. I have a knot under my shoulder blade that makes me feel like I've been punched in the back.

Sorry to read everyone's pain, is spoons more "MN" than hugs?

helibee Wed 20-Apr-11 23:36:06

Hi everyone. I had a good day yesterday and made the most of it and enjoyed a wonderful day with ds. I'm always in pain but it was manageable yesterday and fatigue was kept in check. I did collapse into bed early but I had such fun with ds. However today, lots of pain my back, knees and shoulders are agony. When my tender points on my shoulder flare uo you can actually see the swelling. Dh accidentally brushed past my shoulder and I think I jumped about 10 feet into the air. I actually find Syndol the most effective medicine to take alongside my tramadol when my shoulders flare as they have a muscle relaxer in them. Anyway here's hoping tomorrow is a better day.

I'm trying to sort out life assurance so that if something ever happened to me that dh wouldn't have to give uo work or if he did that he'd have some money as I dont work. I shoukdve known with all my illnesses how long a process it would be but now 7 months on and they've written back and forward to my GP. Now I have to have blood tests and urine sample! I always pass out and my arm is agony afterwards. I know it's pathetic but my pain threshold is just so low I think they want the bloods as in Jan 2010 I had routine thyroid bloods and they found that my lymphocytes were raised slightly. They think that its probably normal for me after 6 months testing, the levels didn't get any higher but obviously worried me at the time. I guess the insurance wants to make sure that it's nothing serious but things like that just play on my mind and just worry me. I know I'm being silly and yiu all have many worse things to worry about. Sorry.

perfumed I know what you mean about not making commitments. It scares me too every time I have to make an agreement to do something or to go somewhere. I hope you do get out and have a nice day with your mum tomorrow.

confuddled do yiu have any antenatal massage therapists where you live? My friend booked one as her back was agony and the masseuse said she was surprised she could even stand up right as her back was so knotted she must've been in agony. I hope yiu get some relief soon and that baby tries to stay cooking

catpower that's good about your DP's work. My dh's work have always been flexible and allowed him to work from home when i've been really bad. I too worry about getting ds ready for nursery. Occasionally if no one has been around to help, he's just had to stay at home. It makes me feel awful.

canei are they going to operate on your shoulder? My dad, my MIL and my SIL all have problems with tendinitis, bursitis and calcification of the shoulder. My dad has had an op on one shoulder and is now waiting on the other. The injections seem to work for my MIL and physic and occiosionally she needs naproxen. My SIL is having to have her shoulder replaced really hope that you get some sleep and relief soon. Do you find things like biofreeze gel helpful?

ben10 so sorry to harper about everything that you've been going through. When I felt like a tablet was stuck in my throat, pins and needles and cold hands and feet, it turned out to be hypothyroidism. I was in such pain with my fibromyalgia that I didn't notice the extra pain that had arisen as a result of the hypothyroidism. Really hope that you get everything sorted with your ds soon. Are you trying to get him into a SEN school?

confuddledDOTcom Wed 20-Apr-11 23:50:23

helibee, does your blood stop flowing when they take bloods? I always thought it was in my head until I realised that my blood stops and my head starts fading at the same time.

I used a lady in my last pregnancy for my back but she's closed since, I'm thinking of asking the man downstairs (it was upstairs of a hairdressers) if he has any contact details for her in case she'll still do it. Last time she said she could spend hours unpicking the knots! I have a lot of upper girdle problems because of being on crutches and carrying my weight through my shoulders and chest. There doesn't really seem to be much around here.

helibee Thu 21-Apr-11 00:09:47

Yes, they have great difficulty in taking my blood. Thankfully our practice nurse is amazing and you wouldn't even know that she's put the needle in. However last time our practice nurse was on holiday and I had a locum. Well I've nicknamed her "the butcher"! She went into a kinky vein that i have even after I told her that, the proceeded to wiggle the needle around so much that my arm bruised from my bicep to my wrist . As this is for the insurance, it'll be a nurse from medicals direct i think. I'm just hoping she's gentle.

Are you near London? If so then I could ask my friend who looks after her back.

confuddledDOTcom Thu 21-Apr-11 00:40:32

If the blood flow changes with the faint feelings or just doesn't flow and you always feel faint it could be linked, the blood goes sticky to prevent it from being taken so it also has problems flowing around the brain which causes the faintness. I've had them induce a TIA from taking too much blood and my body not handling it. Last antenatal I felt a little lightheaded after doing a carbon monoxide test. Phlebotomist couldn't take my blood, it didn't flow, didn't bleed afterwards and didn't even bruise later!

I'm not in London, I'm from the Mids but thanks for the offer smile

KatyMac Thu 21-Apr-11 08:51:35

How are we all today?

I have a cold - hardly life threatening but misery inducing wink

Shoulder/elbow is uncomfy, low back is beyond words

But life goes on

pantaloons Thu 21-Apr-11 16:04:24

Hey, hope everyone is okish today.

I had quite a good day yesterday, but then woke in the night feeling like someone had shoved a brush handle up my arse. I even woke DH up to make sure he hadn't tried anything funny whilst I was comatose! It was the same when I got up, to the point where it made me cry out when I moved, but has now faded away. Not sure what it was, something new and different no doubt!

I've been referred by the optician to the hospital. Rang up just and I 'm booked in for the 20th of June. He seemed to think the double vision might be epilepsy related? Oh well.

And the PALS lady rang to ask whether I had an appointment yet for the injections. The answer was still a big fat "NO" and she is looking into it......again. DH spoke to her and said "if she was a dog I would have hhad her put down by now" Nice. Good job he's only joking. I think.

canei22 Thu 21-Apr-11 19:40:35

Hi everyone, didn't take the amytriptyline last night so spent the whole night waking up every hour. Am taking pain relief tonight and hope the omeprazole stop my stomach from being upset.

helibee hope you get your insurance sorted out, and the blood test isnt too bad.
I only had my steriod injection a few weeks ago to see if it would work, it has worn off already. So I have to go back to Gp and be refered to orthopaedic Dr. That means another 5 month wait!! Am getting to the end of my tether with all this.

pantaloons Thu 21-Apr-11 20:04:47

canei, does the injection really only last that long? I've been waiting 12 months for mine and was hoping for at least 3-4 months releif. In fact, I've pretty much got every thing pinned on it. Bugger.

I've stupidly run out of cocodamol and am in huuugge pain tonight, so I'm off for a rummage through the medicine cabinet tub.

Take care.

canei22 Thu 21-Apr-11 20:17:00

Hi pantaloons, when they give you the injection they say it might work well or not at all there is no way of knowing who it work for.

Hopefully you will be one of those people it works well for.

Hope you find something in your medicine box to help with your pain.

KatyMac Thu 21-Apr-11 21:18:03

Hey chaps my Dad just had his 4th Discectomy & is out of hospital on just paracetamol 24hrs later

Wow - major surgery & paracetamol; he says the pain is so much less than before

CatPower Thu 21-Apr-11 22:16:18

Fantastic news about your Dad, KatyMac! Fingers crossed his recovery continues as it started.

I'm just going to take my tramadol and go to bed. We're off to the Lakes tomorrow for the weekend and I volunteered to drive. Can't take the pills before I drive so the journey could be an absolute bundle of laughs. I'll keep you all posted. Hope you all manage to enjoy the good weather and self-medicate with tons of chocolate/wine - I know I plan to!

KatyMac Thu 21-Apr-11 22:30:39

Thanks - he has been in such pain since it 'went' last year - it was soon after he had the last discectomy

Be careful tomorrow

HerRoyalHighnessPrincessCervix Thu 21-Apr-11 22:38:05

evenin all.

i haven't taken any pain killers for a week shock i decided they weren't doing much so stopped. and feel pretty much the same.. back still niggly and a bit crap if i have to sit for any length of time but not bad.

osteo has discharged me - not because i am fixed but because i wasn't improving any more (and i'm skint). and i went back to the gp and asked for a referral (end of june) to orthopod.

am going to bed now but will flick back and see how you are all doing.

pantaloons Fri 22-Apr-11 07:27:13

HRH, I do wonder about pain killers sometimes. I try to take as few as possible, but find that when I get to a certain point the pilss make no difference. It tends to be the niggly pain they help with and I try to live with that for fear of pickling my insides!

Katymac, glad to hear about your Dad. Only taking Paracetamol must be brilliant and I guess before long he won't even need that?

Good luck with the driving Cat, I'm really missing it Tramadol or no! People keep saying "it won't feel like that long" but it bloody does and I haven't even started meds yet.

Have a lovely day everybody. My eldest (7) has decided she is going to throw us a party, so I she will be preparing that and I really need to try and get some weeding done. The house is on the market and the garden is starting to look like a wilderness!

helibee Mon 25-Apr-11 20:48:22

Hi all hope you've had a good easter. My neck/shoulders are very sore but enjoyed an afternoon in Largs with ds and dn's this afternoon. I went in the wheelchair so was able to enjoy being out for longer.

confuddledDOTcom Tue 26-Apr-11 00:41:53

sad Really fed up! I've been sat at the kitchen table probably longer than I should, playing WoW for the first time in about 3 months as we had some friends over. Got up, walked about 4 steps and realised I can't weight bear on my right leg (the bad one with sciatica) had to shuffle/ hop/ lean on OH to get to the stairs then pull myself up backwards, he pulled me to my feet at the top and helped me shuffle/ hop to the loo and got me into bed. It really hurts sad I'm a little scared as I've never been non-weight bearing before. I know it's probably from how I was sat but I've done it before and not felt this bad. Usually that leg is just numb, doesn't belong to me numb, not painful.

SparkyDuchess Tue 26-Apr-11 00:44:40

Please can I join?

I'm 40, and have crohns disease and rheumatoid arthritis, both diagnosed formally 7 years ago although RA had been around in much milder form for a few years before that.

Areas affected are both shoulders, neck, hips, knees, feet, hands. Spine just starting to get involved.

I get so fed up with hurting all the time, particularly with not sleeping because of it. I'm dying to go to bed, but my left hip is driving me mad and I know I won't sleep and will keep DH awake while I try to get comfy.

I take 8 x 30/500 codeine/paracetamol daily, 8 x 50mg tramadol plus oramorph as and when I need it. Can't take anti-inflamatories due to crohns - could cry, a couple of voltarol would sort things out so quickly! 2 days later though, I'd be glued to the loo and struggling with Crohns joint pain.

I have lots of days where all I want to do is curl up under my duvet and hide, but I can't do that - family, job, etc.

Hopefully this is a nice place to have a little rant?

pantaloons Tue 26-Apr-11 10:40:49

Hi Sparky, rant away, I know I do!

confuddled - Is there anything you can do, or is it just waiting and resting? Not sure what to say really, I know new symptoms are always a worry, but hopefully it will ease off over the next couple of days.

I've just done my daily round of telephone calls trying to get a date for my spinal injections and have been told it will be July - probably. It seems like a long way off, but at least it's a start. The lady I spoke to said they hadn't reinstated me from last years date, only from 3 weeks ago. So it's a good job I rang again.

Take care everyone.

thequeensspeech Tue 26-Apr-11 13:18:53

so sorry to hear that so many of us are still suffering. pantaloons that is awful that you have to keep ringing to try and sort out the injections. I know from my own experience that trying to sort out various appointments be it with gps, consultants, x-ray departments etc make an already stressful situation worse.

sparky I know what you mean about wanting to curl up under the duvet. I wanted to do exactly that this morning and the thought of doing the school and nursery run and then going to work made me so depressed. All have been fine of course if I wasn't in pain. I have appointment with physio this afternoon, hoping she'll be able to help. After seeing so many people including throwing money at osteopaths I am not holding out much hope.

CatPower Wed 27-Apr-11 20:29:50

Sparky, you have my sympathies, especially with the hip pain and never getting comfy in bed. Rant away, I've been finding it soooo helpful when I've ranted to DP so much I feel guilty.

I've not been too bad lately... well, in the sense that I managed a long weekend in the Lakes which involved a lot of walking with minimal discomfort (thanks to the tramadol, no doubt) and the few days since we got home have been a wee bit achy but nothing too bad... that is until tonight, when it's all I can do not to sit in the bath and cry. My hip is aching no matter how I sit, my knee and shin are throbbing and burning, the limp is ridiculous and no matter what I do I just can't get comfy for more than a minute at a time. I've taken 2 x 50mg tramadol and will take more very soon before bed, but right now I feel like I could happily take a chainsaw to myself and end this sorry mess. My next appt with my surgeon isn't until the 19th and I don't know what to expect at all. I'm still dieting/doing pilates, and I'm sure all the walking etc on holiday will have helped, but I'm just in a really moany/upset cycle and feeling like he'll delay my operation and tell me I have to lose half my body weight or something. <sigh>

pantaloons Wed 27-Apr-11 20:36:10

Cat, there must be something in the air. I spent half of last night awake with pain exactly the same as you describe. At the moment I'm trying hard to stay positive and keep telling myself that at least it's nothing life threatening, but then I think broken back, epilepsy and now my eyes going haywire. Surely that's enough already?!?

CatPower Wed 27-Apr-11 20:55:47

Pantaloons I'm the same, I keep thinking I shouldn't be whining because hip dysplasia isn't life threatening but that doesn't stop it hurting. Moan moan moan.

In good news, my cat is due to have her kittens any day now so I'm hovering around her, waiting for the first signs of kitty labour. Nothing so far, other than washing herself a lot and being a huge lazy barrel-cat. smile

pantaloons Wed 27-Apr-11 21:20:21

Cat, that's nice about your cat. Our 2 ewes are due this weekish. I had to my midwife bit on sunday as one of them had a prolapse. She's now got something not unlike a big plastic t up her bits holding it all in. Poor love!

helibee Sun 01-May-11 02:59:49

I'm in lots of pain, just taken more meds but want to saw my knees off! sad and I want to sleep. I don't think that's too much to ask for! Sorry for moaning, I'm just so fed up of pain and lack of sleep at appropriate times, like when the rest of my family are sleeping angry

Anyway hope everyone has had a good weekend and is enjoying the lovely weather. Ds may or may not have chicken pox. He has very tiny spots and some seem to have scanned and are pus looking but they are not much bigger than pinpricks. Its very weird and I'm not sure whether to keep ds home from nursery or not on Tuesday. This has been going on since wed lunchtime!

shitmagnet Sun 01-May-11 11:58:24

Hi SparkyDuchess, just wondering why you aren't on methotrexate? (fairly standard treatment to get Crohn's in remission). Not that I would personally recommend it... just started up again (RA) two days ago <boak>.

Can't join in the whinging, I feel like if I start I will never stop sad. It really helps me to stay as positive as possible, almost as if I refuse to aknowledge the pain. Would like to dip in to this thread though... tis nice to know I'm not alone smile

Mandy2003 Sun 01-May-11 19:55:56

SparkyDuchess - I just saw your post from Tuesday and I wondered - doesn't taking opiate painkillers freeze up your bowels and therefore aggrevate the Crohns?

helibee Wed 11-May-11 23:05:53

Hi everyone. How have you been? Ive had a bad few weeks pain wise and had some bad news from the gynaecologist. My Fallopian tubes are blocked with adhesions caused from the emergency c section and the miscarriage. So now only hope of having another baby is either IVF or getting them to try and unblock my tubes and trying clomid again (conceived ds with clomid)! sad feel very sad and in pain. Anyway hope you've all had a good few weeks and a good bank holiday weekend

CatPower Wed 11-May-11 23:19:32

Oh helibee, what horrible news. sad Have some unMumsnetty hugs from me. Take your time to decide what course of action would be right for you. xxxx

Onlyjoking Tue 17-May-11 01:02:14

I posted this in general health but thought here might be a better place.

I've been ill and in bed since December, the neuro has done a scan and ruled out MS and brain tumours which was a Huge relief. They're still not sure what's causing the disabling painful frequent spasms on my left hand side.or that light, touch, movement and sound trigger the spasms. My right eye is bad as is locked shut due to spasms or to shut out the light
There are also points on my body, back of the neck and all of left side that cause spasms if touched, this also happens if I put any weight on my left toes, physio says that my tendons have shortened considerably meaning I can't straighten left leg and so can't get my left heel to the floor
Having doing some research we think it is Dystonia.
We've read about Dystonia on netdoctor and I tick all the boxes for it, but the neuro didn't consider dystonia and are trying to say it's a physiological neurological thing. I don't agree with him and neither do other people who know me well. It's looking likely that we will have to go private as I'm not able to get to the hospital and my current consultant doesn't do home vists.
Does anyone recognise my symptoms?
TIA.
Hope it's ok to post this here as I didnt get much response on the general health section and this looks more fitting.
Hello to all fellow pain sufferers.

CatPower Tue 17-May-11 07:34:36

Hi Onlyjoking,

I wish I did recognise your symptoms as then I could offer you some proper help, but I'm afraid I don't. sad What a nightmare it must be for you, not just the enduring the symptoms but also not having an "official" diagnosis and treatment yet. Can you get a second NHS opinion from another neurologist, rather than going private straight away? What are your GP's thoughts on it all? I really hope that you're getting decent meds for the pain if nothing else at the moment. Fingers crossed you also find a sympathetic neurologist very soon.

I'm seeing my surgeon again on Thursday morning, although I'm not too sure what to expect. At my last appointment I had lots of xrays taken, advised I would be put on the list for peri ascetabular osteotomy, and he advised me to try to tone up my waist muscles.

I've tried my best with that, have been doing pilates and changed my diet completely, but other than that I'm not sure what he's going to say. He did ask that I bring DP with me to this appointment as he wants to make him aware of the level of care I'll need post-op and at home.

DP and I have discussed everything and we're clear on the need to tell the surgeon just how debilitating the pain/limping is. At the moment I can't plan for anything - not even my car insurance renewal! - because we don't know when I'll get the op, how long I'll be off my feet etc (no point in insuring the car if it's going to be off the road for four months). Even longer-term things... I'd like to have another child, we are vaguely dancing around the subject of getting married "one day", things like me going back to work (or having another baby) etc etc... I can't make any solid plans for anything with this operation on the horizon. Then there's the fact that eventually my right hip will go the same way as the left one has, which means I'll need another PAO, then the pins removed after a year... so the cycle will just begin again.

Sorry for the moaning. I didn't realise really how much this is getting to me. I also need to collect more Tramadol from my GP (though may ask for the slow-release type - does anyone have any experience of it?) today so am a bit antsy without my beloved painkillers! grin

Really hope everyone's doing okay this morning.

CatPower Sat 21-May-11 11:40:26

Just a quick update. I saw a different surgeon on Thursday who insisted on examining my hip again. After a lot of poking, twisting and prodding, he thinks my muscles and tendons are inflamed due to the limping/trying to protect the muscles etc. He's referred me to radiology to get a steroid injection into my groin (where a lot of my tendon and muscle pain seems to be). Has anyone else had this?

I haven't lost enough weight, which I was pretty much expecting. The surgeon says I'm scheduled in for the PAO "at the end of the year" which, although it's a long time to wait, it's good to have a rough idea of when to expect it.

In the meantime, I've bought myself a rowing machine! The surgeon recommended it, says it'll help to regain some strength and help with my weight loss and fitness. It is just about killing me, but in a good way (I think!). Apart from that I'm just to continue with my tramadol and hope the steroid injection helps.

How's everyone else doing?

helibee Wed 01-Jun-11 00:07:29

Hi all how's everyone doing? I've been in bed for 3 weeks with a bad kidney infection. At one point I couldn't even move my head or speak. Then I could only manage one word whispers. Ironically it was only ds at 3 yrs old who could understand me grin thankfully am much better now but that was not a fun few weeks. Anyway will catch up with everyones news tomorrow.

Confuddled, have you had the baby yet?

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