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Spoonies... friendly support for anyone with chronic pain & fatigue

(173 Posts)
Grockle Thu 10-Apr-14 21:47:55

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

Spoon Theory Here

Old thread

BeyondIsBloodOfTheDragon Fri 11-Apr-14 12:46:28

Placemaking smile

Hope everyone is well x

onlyjoking Fri 11-Apr-14 17:50:29

Hello, I'm new to this thread, but not new to pain and fatigue.

I have a neuro disorder, anaphalaxis buggered back and most recently Kidney stones and PTSD.
After ending up in ICU for two weeks when they tried to remove the stone, there was an infection behind the stone,which caused septicemia,which led to multiple Organ shut down, level two respiratory failure, intubation and full life support, tracheostomy and a nephrostomy bag.
I still have the nephrostomy bag and have had constant infections,
antibiotics and thrush, not to mention the agony of the stone. I have a full time carer and a district nurse who comes out to change my bagthree times a week in theory in practise it can be three times a day,when the bag comes off, leaving me in a puddle of wee.

I've seen the consultant who gave me the options of
1)Trying again with Laser treatment (been cancelled twice due to infections)
Each treatment will be around 45minutes two weeks between each one.

2) Or a stent then trying to remove the stone that way.this would have to be repeated if not successful, kidney stone is 10cm.
If I go for option two,I will need a GA and there's a much higher risk of more infections. And even more risk of infection with a stent in place, that's what scares me, it was in trying to move my stone that led me to ICU,

I'm very anxious about both options, but I'm leaning towards the stent.
Which will mean I can finally get rid of my nephrostomy bag.
I would welcome any advice especially anyone who has or had either of these treatments.

flow4 Sat 12-Apr-14 08:20:43

Just checking in on the new thread...
I have quite a lot happening at the moment: new pain killers, new orthotics, new grab rails and raised loo seat fitted at home, and most significantly of all, a date for a hip replacement in less than a month! shock
I am really, really hoping that if I can get rid of this major cause of pain, I can reduce a lot of the other (probably associated) pain and therefore reduce my fatigue too... Fingers crossed!

Grockle Sun 13-Apr-14 14:54:14

I wrote a long post that disappeared. Am really struggling atm.

Bloody hell, onlyjoking. I have no advice, I'm afraid. How long does the laser surgery take to make a difference?

Love & spoons to everybody.

Hi all.

oJ that is awful, in so sorry to hear you have been so unwell

i room my first shot of humira on Friday. I totally wimped out of injecting myself and made dh do it but it wasn't too bad.

i don't want to get too excited but my swelling has decreased quite a bit which is amazing so although i am terrified of the side effects i am hopeful of regaining some quality of life

best wishes to you all x x

BeyondIsBloodOfTheDragon Mon 14-Apr-14 12:25:23

Jesus oj, thats awful <big un mn hugs> sad x

Grockle, great news (on the other thread) about the scooter! I've acknowledged that I need something for a while now, just been putting off doing something about it. But i think tomorrow is the day, dh needs to see the gp anyway, so I'll go with him and ask for the referal to wheelchair services (is that what theyre called?) that ss advised i got. Your breakthrough has inspired me smile

jan2014 Mon 14-Apr-14 19:29:00

hi there. ive had awful fatigue for a long time now (a few years) and going to docs on wednesday. they always fobbed me off before by blaming it on other things, but those other things aren't an issue any more and its still there and getting worse. i am really hoping they take me seriously... if i exercise at all, or had a busy morning or whatever, i can barely function later. my heads sore. i get brain dead at night. i know what i am feeling can't just be normal stressors, i just want it sorted out, i know theres no cure but at least a diagnoses would take the pressure off.

Grockle Tue 15-Apr-14 11:27:43

Oh, good Beyond. I didn't think of going to GP. I may buy my own mobility scooter - I don't need it all the time, only for a few weeks every year but it makes such a HUGE difference. I just wish it weren't so bulky.

I can't remember what I've said on here but I'm not on zopiclone to help me sleep - I am now allowed it every night and, although it helps me drop off, I'm waking up between 2 & 4am and then not really sleeping again so I'm still sleep deprived, although my quality of sleep is MUCH better.

I don't know if I could inject myself. My dad used to but he's not a wimp like me! Hope everyone is enjoying the sunshine.

Hi all, hope evryone is doing ok

Well, my pain has been a little easier over the past few days. I swapped codeine for butrans patches last week and they seem to be keeping me a bit comfier

My swelling has definitely decreased since my humira shot and I am sleeping a little better the last two nights so hopefully that will stay - its been over two years since I got more than three hours sleep a night.

Have slightly overdone it the last two days so am having a rest day tomorrow to try and recuperate

How is everyone ?

CFSKate Sat 19-Apr-14 09:26:20
CFSKate Sat 19-Apr-14 09:27:33
BeyondIsBloodOfTheDragon Sat 19-Apr-14 17:21:38

Oo, cheers kate, I was just popping over to link and you've beaten me to it grin

Kids away for the weekend and Dh is on nights. I'm enjoying some time doing sweet FA for once wine

FaceDirectionOfTravel Sat 19-Apr-14 17:23:03

Hello all, I have CFS and dip in and out of these threads.

Encouraged by Grockle I tried a mobility scooter for a day out today and am hoping that tomorrow will therefore be okay and not spent in bed! Thanks for the encouragement. thanks

murmuration Wed 23-Apr-14 08:22:40

Hi all. We took a trip over Easter weekend, and I'm completely beat. I planned a week's holiday off work this week, in anticipation. DH is away this coming weekend and I've been invited to a friend's party -- at first I thought it was perfect, as I'll have had a whole week's rest leading up to it.

But now I'm not sure; I'm still so tired. And it will be a 2hr bus-train-bus journey each way. And the day before is DD's swimming lesson, which without DH means it is a two-bus journey plus a half-mile walk to get there. I'm not sure I can do both of those on adjacent days, and with a 2yo. And the party will be being out for 4hrs just for the transport, plus any time I spend there! But I haven't seen this friend in over a year. But I already know work promises to be really heavy going as soon as I get back, and I want to return something less than exhausted. But I hate not doing things! I want to actually see my friends. Argh! Any advice?

Sorry for all of you in pain sad I hope things look up.

BeyondTired Wed 23-Apr-14 09:41:27

Tuesday night is methotrexate night and so yet again i spent a large chunk of last night on the bathroom floor, dry retching over the toilet, dizzy and having weird hot flushes. It is really not agreeing with me.

BeyondTired Thu 24-Apr-14 15:50:33

Rough day again. Had to be up early to go and wait to be seen by the gp, to sort out my pain meds. As tramodol did bugger all, trying dihydracodiene again. Only one months supply because gp says mtx will be working by then. So ignoring hms problems that will still be there when psa is fixed, ignoring how ill the mtx is making me. I asked what i can take on top if that isnt enough and she pulled a weird face and listed off the meds i take, said i can take them on top. Well thanks, but i do, and it is still not enough <frustrated>
On the plus side, i took ds1 as hes been having growing pains again and shes referred us both to genetics to check for obvious eds. Although i did get the "eds is one of those things that is so rare, most gps wont even treat it once" monologue. hmm She insisted that ds1s legs look fine to her (i say he is knock-kneed, I'll stick a photo on now)
She's normally great, so quite disappointed by todays visit. Did start sorting out wheelchair svcs referral though
Anyway, kids are a nigthtmare and have a headache. DH is in work til about 7

BeyondTired Thu 24-Apr-14 15:51:37

Ds1s knees

Weegiemum Thu 24-Apr-14 15:57:36

I love Spoon theory.

I suffer with a neurological illness -CIDP - Chronic Inflammatory Demyelinating Polyneuropathy. I'm chronically tired (in a way I'd never experienced until 2 years ago) and I've got horrendous foot pain (controlled - partly - by amitryptaline).

Life is really a bit shit. I do my best but there's a lot going on (in hospital every 4-5 weeks for IV treatment, etc) that just makes life hard. I'd like it to be easier but I'm not hopeful!!

candycoatedwaterdrops Thu 24-Apr-14 16:53:34

I hope it's OK if I am on this thread. blush I was on a member when it was in general health, I am not a parent.

I have Rheumatoid Arthritis, was diagnosed in 2009. It's fairly severe and has caused joint damage in both shoulders, one hand, both feet and both ankles, in addition to nearly destroying my jaw joint. So, even when my RA is not flared up, I have permanent pain and mobility issues. It is a long and hard slog and I'm on another drug to induce remission. It took them 4 years to get my symptoms settled and then I had a bad reaction to the drug, so I've started new injections today. I'd cross my fingers but they're a bit stiff. wink

Hi Korma how long since your first humira injection? I had my first this afternoon. It stung a bit but wasn't as bad as other injections I've had.

BeyondTired Thu 24-Apr-14 18:31:37

grin im sure noone is going to mind candy, there are plenty of nonparent posts in other threads here. Trouble is, theres no disabled adults bit, and if there was, it'd just split the traffic here and it'd be even quieter! I guess as with the children with special needs' area, its either too specialised and too quiet (ie now they have a teens bit too) or too generalised and too busy?

Had a sleep so headache has gone. Still not right, but massive improvement smile

murmuration Thu 24-Apr-14 21:39:20

Of course you're welcome candy! smile

Ugh. I tried to explain to my parents again about my fatigue problems. It just doesn't work. Does anyone else just have family that doesn't seem to understand? My mother is saying of course I'm tired, as I have a 2yo. I try to explain that this is beyond that and predates DD. But it doesn't stick. And my father constantly is checking up on things, and is disappointed when I haven't done stuff. I was sorta hoping that telling them this would stop that, but it hasn't.

Still don't know if I'm going anywhere on Sat... DH will now drop me off at swimming on his way out of town, so that will cut that travel in half. But out to my friend's is a big trip. I wish I could just go and be tired the next week, but I know it's going to be tough at work even without being extra tired. sad

MiscellaneousAssortment Fri 25-Apr-14 15:47:58

Hello I've been around for a while on mumsnet but hadn't found this thread before, ReallyTired mentioned it on the invisible disability campaign thread so I've come to say helloo.

I just printed out a copy of the spoon theory for my carer manual... I hope it helps them 'get it' as much as it clicked for me when I first read it.

Pacing is about being thrown out of the window at the mo though (buggeration and know I'm taking risks)... Moving house and employing new carers and working (they've changed the way they do holiday days and I've run out), and my carer book mostly needs updating for new flat... And then normal life goes on on top and lots of reassuring my ds who's moving house for the very first time. Ooof!

Does anyone else find life overtakes being able to pace and put your body first? X

magso Fri 25-Apr-14 23:27:44

Hi Miscellaneous. Yes my best efforts at proper pacing can go array especially in school holidays or like yesterday when it took 5 hours to take ds to a hospital appointment and back due to a motorway closure which I did not need to use - but traffic around it just ceased up! Life just gets in the way! Actually I was able to pace better when I was iller due to having not much choice IYSWIM. It must be very difficult moving house and all the changes that go with that. I always find new things more tiring.
I think it is very hard for others (without a fatiguing conditions) to understand murmation. It took Dh a while to understand about pacing, and others further away don't understand at all. I doubt I would have done - until I became ill. It is upsetting when others minimise. When Dh gets cross with me for not doing something I have to remind myself not to take it personally - its the illness that's the cause not me being lazy!
Beyond I hope you are feeling somewhat better - and that the MTX is working- it better be doing some long term good for all the upset it is giving you!!

BeyondTheVirtualActivist Tue 29-Apr-14 23:15:58

Just marking my place as this had dropped off my tio smile

<spoons> to all

Grockle Wed 30-Apr-14 11:13:19


I've been quite ill for 5 weeks now - GP has just signed me off for another 2 weeks and will keep doing so as needed. But this is the beginning of the end for me at work now - I;ve had so much time off, it's dismissal time sad

I need to reapply for PIP (I get DLA low rate care) but don't know where to start- any ideas? Dr also suggested contacting social services but I'm a bit wary of that. Has anyone had them involved?

Welcome, Face. I'm so glad the scooter helped. I'm debating buying one now but I feel very silly. I can't manage my manual wheelchair.

Yes, miscellaneous, life gets in the way of pacing.

Glad your pain has been better, Korma

Beyond, sorry methotrexate makes you so ill.. I can't tell about DS's knees, I'm afraid.

MN campaign re invisible illnesses is a very good idea.
So glad the mobility scooter helped

magso Wed 30-Apr-14 15:25:52

Sorry you are having a bad time Grockle, and that it may lead to dismissal. Do you have a union that could help you? I don't know anything that could help but as you are sick there should be some sort of protection from dismissal. Bumping for you.

murmuration Wed 30-Apr-14 15:47:13

Sorry things aren't going well, grockle sad I'm afraid this is all beyond my experience, so I can't offer anything other than virtual support.

Yes, I also find life gets in the way of pacing massively. I eventually decided not to go out last weekend, but then it gets to feel like I have no life. Can you still call someone a friend if you haven't seen each other in over a year? I hope so, otherwise I have almost no friends...

fuzzpig Wed 30-Apr-14 15:48:57

Hi all!

Dizzy day today. Needless to say having POTS I am dizzy every morning but normally I can sort of walk it off and by the time I've done the school run I feel better. Not today though. Work was not easy hmm feel like I achieved bugger all, every time I reached for a low shelf (quite a lot due to the tasks I had) I felt worse. My colleague - whose DD was also recently dxd with POTS - offered to swap with me but I said no. We have to get permission from senior staff to do that though and I hate drawing attention to myself in that way sad

DH is having a very very rare evening out (going to his eldest's house to watch the football) and I am really dreading this evening as there's loads to do. Argh.

Sorry for rant blush

fuzzpig Wed 30-Apr-14 15:57:50

Argh grockle that sounds horrible sad is there a part of you that's relieved at the prospect of stopping work? It may well be best although it's scary.

Agree about a union, also make sure you get all their relevant policies to read (or ask someone else to read for you) so you know your rights.

Grockle Wed 30-Apr-14 16:07:18

Thank you. I have had support from my union in the past. I will make sure they know I'm off again.

I just ordered my own mobility scooter shock

Thank you for your support. I missed this thread when I went AWOL!

magso Wed 30-Apr-14 23:26:31

Ooh exciting getting a mobility scooter! Can you choose the colour? I've been tempted to try one out a couple of times in a shopping centre near by, but they said only registered disabled could hire one.

BeyondTheVirtualActivist Thu 01-May-14 14:54:51
CFSKate Thu 01-May-14 19:53:58

video about CBT and ME/CFS I haven't been able to watch more than a couple of minutes but I hear it's good.

candycoatedwaterdrops Thu 01-May-14 20:01:44

magos I am shock. There is no such thing as 'registered disabled' anymore, well there is....but you do not have to register to be legally considered disabled. I refuse to register on principle.

Ahh, i forgot cfskate is queen of the links grin

I am "registered", but as candy said, its not essential. My anxiety likes to try to remind me every so often how easily i could be rounded up now I'm "in the system".

MiscellaneousAssortment Thu 01-May-14 20:24:33

Scooters are great smile

I have experience of adult ss involvement if you want to ask me anything is be happy to help flowers

I'm knackered. And moving house tomorrow sad its going to be hideous. I don't have family support and no trained up carers yet, so I can't just hand some of it over to someone and expect it to go right. I have professional movers who are packing and moving everything, but won't be unpacking so at the end of tomorrow I'll have a place sky high with boxes to unpack.

I find it painful to watch/ have to stand by and know people are making work for me by their actions and being unable to stop it. Its not their fault, but its horrible all the same. Just things like packing stuff in the wrong box / mis-labeling a box / losing things / putting things in front of stuff that i need like my crutches etc, all stuff that just happens unless you stand over someone like a dictator. And then I could cry that I know it will become a problem I'll have to deal with over the next few weeks and I haven't got the physical ability to deal with it, or the physical ability to stop it happening in the first place.

Sorry for whining, it's just so f*cking hard and I find it impossible to keep equanimity about it all. I wish I could be more relaxed about it and content or accepting, but when you physically are so vulnerable and know you are having to do everything that is bad for you just to get by... I find it hard to be ok with it.

magso Thu 01-May-14 23:04:20

Miscellaneous best wishes for a relatively smooth and hassle free move, tomorrow. I cannot imagine moving.
OJ, how are you getting on? You have had an absolutely horrible time. I am afraid I can't help with the medical decisions. It took me a long time to recover from respiratory failure etc and I was not as ill as you. I can only say take life as gently as you can which I know is not very helpful!

2kidsintow Thu 01-May-14 23:14:26

Hi. Wondered where the chronic pain thread I was on (briefly) before had gone, found you!

I've got TN, so it's just (just!) a pain condition. Horrendous when not controlled. I'm on gabapentin to control it and it's doing a wonderful job of keeping on top of 95% of the pain. Only a few niggles when I'm due my next dose etc.

I have a bit of a twitch, hopefully just a side effect of the meds.

I've had my MRI results and have been told they have seen an artery pressing on the nerve, so a likely cause for the pain. They also report 'several high signal areas in the white matter on both sides of my brain' so I'm now being sent in to Walton for a day for blood tests and a lumbar puncture (eek) to rule out MS among other things.

NotCitrus Thu 01-May-14 23:59:19

Hello, I've not posted since the start of the previous thread. Stuff happened over the last couple months and I finally sent in a PIP application and best friend sat with me writing down all the stuff for the second form(she happens to be a disability adviser with similar more severe medical conditions to me).

I'm doing an exercise course at the hospital atm which Ithink is helping my overall stamina but last session managed to strain the joints that were a problem in the first place. I'm seeing a pain clinic next week to see if they have any ideas about how to relax some muscles, seeing as the rheumatologist has run out of them. I could really do without being an 'interesting' case!

MiscellaneousAssortment Fri 02-May-14 02:12:47

Thanks, I'm a bit calmer now smile it's the pain + frustration + panic that gets me every time.

I have this weird thing of not knowing when I'm in pain until afterwards/ I completely break down, does anyone else have this or am I totally odd?

I am learning to recognise other signals like rapid heart rate, sweating, talking faster, getting cross, and trying to speed everything up so I can get out of the situation asap. But then looking back, even 30 mins after I know I was in paralysing agony, and can't work out how I missed it

Not the elephant in the room, more like the elephant charging straight for me and trampling me underfoot, whilst I can't work out why it's do confounded hard to keep the conversation going. Crazily British - the empire was founded on fools like me smile

I think it's because I have been in pain ever since birth / early childhood but wasn't 'allowed' to be, and was punished if I did try and put it into words, so I didn't learn to link up my physical sensations with what people call pain. Then it became a coping mechanism, deny deny deny, ignore ignore ignore.

It sounds nuts doesn't it?

FaceDirectionOfTravel Fri 02-May-14 09:33:35

Misc I used to have this with hunger and anger. Couldn't. tell I was angry until I snapped, couldn't tell I was hungry til I was very hungry and quite cross! CBT techniques helped. I have to check in with myself, rate my feelings on a scale of 1 to 10, learn to take steps at 6 or 7 rather than waiting til 10.

I have issues with pain misc. Its either "maybe it hurts? Dunno, but I'm fine" or "oh my god I am dying, please kill me". Weird perceptions of pain is on the list of things that are pointing me towards thinking I'm undiagnosed ASD. For eg, labour did not hurt. It was hugely uncomfortable, but there was no pain. But then I was another one not 'allowed' to be ill, so could also be related to that smile

2kids, is TN similar-ish to TMJD? Its late (haha, its 9pm!) and google is spinning me out, but I spotted TMJD mentioned on a page about TN?

fuzzpig Sun 04-May-14 22:09:43

Ugh I have a cold. Trying to do what I can to keep it as low level as possible (antiseptic gargle etc) but the muscle pain set in earlier. It's been a while (I'm lucky I can say that really)

Hi all

candy I've just took my second shot of humira last Sunday. Should have been Friday but I totally freaked out, had a major panic attack, followed by an asthma attack and was a wreck for a few days. Really had to psyche myself up for it Sunday. It isn't terrible is it ? I do my stomach, I don't have much fat on my legs, they are very muscular so I don't fancy trying to inject them. I do however have loads angry of fat on my stomach so that's where I inject. Oh and I can't do it myself, no matter how much I try I can't get my finger to press that button I have to get dh to do it.

I must say I felt great after the first injection but nothing to note after the second, no change in either direction. I have also informed my nurse and consultant that I've stopped my methotrexate. They weren't too pleased but it was making me extremely ill and I have enough to contend with.

I just really hope the humira works because quite frankly I am terrified of my future. I've also upped my amitriptyline and am managing to get some sleep for the first time in 2 years and that is helping.

I'm still utterly exhausted and in quite a bit of pain but I have my head round it now so am coping much better.

How are you ? And everyone else ?

grockle I'm sorry to hear of the work situation :-(
Afraid I can't offer any advice but (((hugs)))

murmuration Mon 05-May-14 03:17:08

Welcome back, 2kids and notcitrus, I remember you!

Miscellaneous, for me, it's that I seem to forget I can do something about discomfort or pain. For example, I'll be sitting in the house in winter all cold, and it never occurs to me to either put on a sweater or turn up the heat. If I'm in pain, it almost never occurs to me to take pain medication. Someone has to remind me. DH has a weird thing where he feels he doesn't deserve to feel better, so doesn't take meds, but for me I honestly don't even think about the fact that I can. I don't quite know why this is.

Sorry to hear about your cold fuzz. I'm currently fighting one off. Had a bad sore throat on Wed night, and have been skirting the edges of it ever since. I'm really scared it's going to break through.

I've also come to the realisation that what I call 'fighting off a cold' might actually be what other people call 'having a cold'. I never understood how people went into work, etc, and yet said they had a cold. When I have a cold (to my definition), I can barely get out of bed and I'll be that ill for at least a week or more, and it will take weeks more to recover. Yet other people will say blithely, "Oh, I've got a little cold", seem for all the world reasonably normal to me (not constantly hacking away at a cough or blowing their nose every 3 mins, for example -- sometimes I won't even see one such event in the hour meeting I spend with them), be able to work, and report they are better a few days later. So I've usually felt quite like a wimp, since I could never be at work and do the stuff people do when I have a cold. But it's occurred to me that how they appear is a bit more like me 'fighting' a cold -- I'll have a few scattered symptoms but they haven't 'broken through' to be constant and completely knock me out.

NotCitrus Mon 05-May-14 04:55:38

Hope the move went OK misc. Pain is such an odd concept - some pain I'm quite happy with, other types of pain are pure nightmare, and doesn't relate to anyone else's experience. I remember when the hospital cocked up getting me codeine for my SPD after my first birth, and every time I asked where it was, they started askingabout my vagina. Eventually I screamed at MrNC, " why does everyone keep asking about my bloody vagina?" He pointed out I'd given birth through it less than 24 hours ago.
"But that's all fine now! It's my pelvis that hurts!" Cue boggling nurses actually getting me codeine within the hour.
murmur are you being kept awake by pain too?

I've just realised that I've been writing my congestion of as 'a cold coming' for weeks, so think its actually sinusitis. Used to suffer a lot with it, but normally more pain. Wonder if painkillers for artritis have made me not notice the pain? Does anyone happen to know if I can use nasal sprays etc on methotrexate?

Oh go beyond, stop googling! shock

"Acute episodes of sinusitis can also result from fungal invasion. These infections are typically seen in patients with diabetes or other immune deficiencies (such as AIDS or transplant patients on immunosuppressive anti-rejection medications) and can be life threatening"

2kidsintow Mon 05-May-14 11:50:29

Beyond , TN and TMJ can both cause nasty face pain, so they can be confused in the early stages when they are trying to work out what the hell is going on. smile I initially went to the dentists and even had a tooth out thinking it was a dental issue before realising that it wasn't my teeth.

Yesterday was an annoying day. Despite my medication keeping me almost pain free, I had lots of aches and niggles. Out for a walk in the lovely fresh air - then my face gets cold and I keep having to hold my face to warm it up to stop the ache.

Could be worse though! Before the medication it was like having labour in my face and it would stop me dead in my tracks. I couldn't move or speak and sometimes even breathe until the pain passed.

Hurrah for modern medication

sad not good, know what you mean about the ache though, thats what my probable sinusitis feels like now - not painful but my jaw feels tired, like ive been eating toffee!

I have tmjd btw, probably linked to my hms. I think it may have been what was causing my migraines, but i havent had one since i've been on lofepramine, so thats a handy side effect! grin

Grockle Mon 05-May-14 20:48:25

Thanks misc - I just want to know what they can offer & how it might impact DS. Hope your move went well. I sympathise - I hate watching people do things that I know makes things harder for me. I'm a bit like you - I don't realise how much pain I'm in until I stop & sit down.

I'm like beyond with assessing my pain too.

I THINK I maay have TMJ now too.

magso Mon 05-May-14 20:58:38

I find I forget where pain is, so when a dr/physio asks I can only be very vague and only remember the aches pains that are very troublesome at that moment- rather than pinpointing what keeps me awake every night. Weird isn't it? I am kind of so used to some that they are part of me. Ds has ASD and we tell from his behaviour if he is in pain, he is pretty poor at pinpointing it himself.

2kidsintow Mon 05-May-14 22:17:39

I hate appointments.

I have ongoing issues with a painful hip. I've posted on the other spoonies thread about it, I think.
In a nutshell....
Complained of painful hip to GP - It will get better.
Returned: xray and blood tests.
Phoned for results - they couldn't find them.
Then they found them and they were 'fine'.
Then they called to tell me to see a Dr about them. Dr said nothing wrong with hip, but spondilitis on spine. (So that's why I also had a bad back!)
Returned again as pain not going away. Referred for physio,.
Saw lovely physio lady. Made some aches disappear, made the proper hip pain worse
Sent to the hospital. They referred me back for physio.
Physio was a nice (and good looking) chap. smile Exercises more focussed, but still aggravated hip pain. He referred me to a consultant.

Seeing the consultant and he asks for a history of my pain. I find myself taking a deep breath and trying to remember where to start.

Oh, and that was after I laughed when they asked was I otherwise well and I answered 'yes, fine' by habit, before having to explain that the laugh was at myself as I was not indeed fine, but was being diagnosed with my TN at the time and juggling different medications.

I say hurrah for modern medication, but half of the time I had off work was because of the TN pain, but the other half was the gp trying to get me on a medication that tackled my pain, but didn't make me poorly with the side effects.

(PS - hip consultant took one look at the original, three year old, hip xray and diagnosed my problem. Absolutely steaming that I went through years of problems when my GP should probably have picked up the problem in the first place)

See this is what i hate about gps says the woman whos hoping long term to train as one! sometimes you do just need to see an expert, but the gatekeeper says no angry

2kidsintow Mon 05-May-14 22:57:56

I know. Thankfully, with my TN, the GP immediately made a neurologist referral.

Very annoyingly, when the orthopaedic consultant pointed out the problem on the xray (which is v embarrassing when looking at a pelvic xray as you can see all the soft tissue bits too as shadows on the film blush ) I could see it too. There's clearly a difference to the roundness and thickness of the bone in the ball of one of my hip joints. So why couldn't whoever looked at them 3 years ago?

2kidsintow Mon 05-May-14 22:58:51

The ortho consultant was very surprised that it had taken 3 years to get to see him, so perhaps I'm a special case.

murmuration Mon 05-May-14 23:05:10

Massive pacing fail. I took today off, as it is the one bank holiday we actually get officially. But knowing this, I sort of overdid it on the weekend, then agreed to go out with DH this morning and it was too much. Ended up in tears saying over and over 'I'm so tired' sad

Does anyone else get weepy when they get tired? It seems I just burst into tears for no particular reason when I'm tired. And if I'm very hungry, too. It's like being a toddler.

Glad they figured things out for you, 2kids, but annoying that it took so long. And then you try to live life believing things are normal... I hate that. Also good to hear your meds are finally helping! I was wondering how that was going.

2kidsintow Mon 05-May-14 23:10:50

Thanks, Murmuration. smile

Soooo easy to overdo things, then suffer for it after.

magso Tue 06-May-14 10:31:38

I can get weepy when exhausted and symptomatic++ Murmation. Happened to me yesterday - part exhaustion and part allergic reaction. Ds ( who has ASD and LD) has to keep compulsively doing things he has been told not to do in the past. He quite deliberately stroked an animal I am very allergic too, said aloud that Mummy cannot touch it because she is allergic, then wiped his contaminated hand across my face. I know he does not fully understand but it effectively ended our (and his) bank holiday treat. By the time I got to a sink to wash my face and take my puffers I looked as if I had been weeping ( which I hadn't at that stage- just struggling to breath and see since eye swelled up).

2 kids it can be so it and miss, and I'm so sorry it took so long to work out what was causing the hip pain. I had a similar very delayed diagnosis (pneumonitis) which lead to becoming critically ill, a long stay in hospital, dodgy lungs and finally developing CFS, so have been there too. I like the idea of specialised GPs with a bit more knowledge of one area, running inexpensive local clinics as gate keepers. I saw a ENT GP locally who referred me for sinus surgery, after treating me with stronger steroids my own gp was not happy to prescribe. Gps have to have such very broad knowledge!

CFSKate Wed 07-May-14 16:22:43

"‘There is a significant lack of awareness about PoTS among both the public and the medical profession.
‘We often find the disorder is under-recognised by physicians, which can impact on the patient’s quality of life through misdiagnosis or being informed symptoms are “all in their head”.
‘As a consequence, historically many patients with PoTS have been given a diagnosis of ME, anxiety or panic attacks."

I've only had my fucking PIP result through!!!
Enhanced and enhanced. Finally. smile

FaceDirectionOfTravel Sat 10-May-14 11:52:07

Brilliant news!

Nearly a year of back payment went into my account yesterday shock

MiscellaneousAssortment Sat 10-May-14 16:16:35

That's amazing Beyond grin

Btw you do know who I am (I think!) in spite of name change - so lots of yays from me flowers

MiscellaneousAssortment Sat 10-May-14 16:27:13

CFSkate that's SO true.

Pots creates the physical symptoms of anxiety, but caused by the body not the mind - a sort of cause and effect reversal. Preaching to the converted posting this I know!

I often realise I'm in the throws of a pots 'attack' because I have this cold hollow dread in my stomach and start getting anxious. I catch myself getting panicked and follow the thought back and there's nothing actually there behind the feeling! I'm learning to do this and realise my blood pressure has plummetted and my heart is going ten to the dozen, and that cold feeling in the pit of my stomach is lack of blood flow and my digestive system has shut down.

What's very frustrating is that I've been approved for a drug to help after in patient testing last august... but they wanted to see me in out patients first and the out patient appointment has not appeared. Bah humbug.

Nordicmom Sat 10-May-14 19:24:52

Hi! Can I join ? Been lurking for a while since don't really have anywhere to talk about my health issues except with my healthy friends and family and I don't constantly want to offload on them . I have Secondary Addrenal insufficiency but am fearing it's heading towards more serious Addisons . Been sick about 4 1/2 y mostlikely got sick after steroids were given to me for reaccurent miscarriages and despite careful withrowal my body couldn't handle it and never bounced back . Took 9 m took to diagnose and had to do the work myself since Gp was clueless. First had myself referred to a rheumatologist due to initial symptoms being similar and family history . No diagnosis just found out from gp and rheumatologist all the things I don't / won't have which was a bonus but then had to do some more research ( love Internet thanks ) and had myself referred to an endocrinologist ( thanks to dear DH private health insurance through work we'd never needed before ) and finally got my diagnosis and treatment . Unfortunately treatment is a guessing game really and meds don't fully take symptoms away . I'm never the same whatever I do just have to take day by day and do what I can which isn't so easy with two lovely but exhausting kids ds9 dd2 . I'm on a steroid , a betablocker for the side affects of the steroid ( my heart goes crazy ) and painkillers. Depending on what kind of day it is I have mainly muscle and joint pain , nausea, dizzyness and endless fatigue . Finding it really hard to ecxept I'm not well anymore and pretty much do most things as much as I can anyway and then suffer the consequences . A lot of physical stuff is out the window though . Haven't been ice skating , bicycling , skiing or anything after getting this . Cant do any extra exercise in top of the every care of dd 2 and housework etc . Can't run etc . Take a lot of taxis everywhere since I can't drive ( really must learn this year) . Can't do a lot of stuff with dd 2 or DS 9 for that matter I used to . Have to delegate cleaning etc to DH and get my DS to help me too . I still really want a one more child and nearest and dearest find it hard to understand since am struggling with two at times already but I don't want to give up everything I wanted just because of this bastard illness . So i fight on . When ever I get any kind off cold etc it lingers on and turns to worse unlike with rest of the family since my immune systems not the same due to steroids . Atm have had a Chest infection or something for 6 w and still coughing after 2 different antibiotics so back to doctors I guess . Mine is a invisible condition so people never know when I'm in horrible pain standing in a bus with a buggy ( taxis now always couldn't do it anymore ) about to fall over with dizziness and nausea when I need more hydrocortisone . So I get little understanding or help from strangers since they can't see I'm not ok .
Anyway I 'd love to join you guys for support if you'll have me sorry for the ramble !

2kidsintow Sat 10-May-14 20:16:05

Welcome, Nordic. x

Nordicmom Sat 10-May-14 20:44:32

Thanks smile

magso Sat 10-May-14 21:08:04

Hi Beyond, so pleased to hear your news! I found when ds got his DLA II got a bit low after a few days - the realisation he needed it. I hope you are not upset that way. I try to think of ds DLA as an allowance to allow him to do the things others without his difficulties do.

Hi Nordic, but sorry you are unwell enough to join us IYSWIM. I think it was the high dose steroids I had to take ( or I wouldn't be here) that contributed to my failure to return to proper health even once my lungs were functioning better. I don't have Addisons, as I can theoretically still make cortisol if injected with the sythesin stuff -although for some reason I don't get it right -so have low cortisol. I also have POTS which gives the heart going crazy symptoms. Its been 5 years for me, but I am more able than I was at first. I still can't run or keep up with the house work, but I can walk again without keeling over. So there is hope! My son is older (14), so is at school during the day, although I worry about what will happen in a couple of years (his special school ends at 16) as his ASD and LD mean he needs constant supervision and energetic care - but no doubt less tiring than having little ones!

Very pleased for you beyond, it makes a massive difference to be less worried about money. Do you mind if I ask what you are claiming for. Please don't answer if you don't wish to, or pm me if you would prefer.

My DLA runs out November and ill have to apply for pip and I'm so worried already. I can't afford to live without the money ill lose my home so I'm extremely anxious

Mainly its for my PsA korma, but also hypermobility syndrome and fainting (probably pots but not official yet) and looooong term depression and anxiety. Plus extra points for my broken nether regions.

All the 'little' things together add up to a big problem.

I was down when i had the medical, and had to verbalise just how bad i was, makes it more real than just dealing with it. Now I am just over the moon that it is finally sorted smile
Annoyingly, I cant drive because of the fainting, so dh will be getting my 'free' car. But yay, chauffeur! wink
And the back payment will cover my mobility scooter too!

Thanks beyond. I have PSa, fibro, unstable hypothyroid, anxiety prob / depression and possibly pots, I'm hoping that will be enough to qualify me.
I got higher rate DLA without a medical so I'm hoping ill get pip but terrified i won't.

It's such a relief isn't it ? I got very upset filling the forms in, I'm an 'I'm ok' person. "I'm ok" is my standard response and it was so hard writing down that actually I'm not ok and I'm really quite broken but actually looking backi think it helped a great deal with accepting this

I was in denial for a long time and thought if I just tried hard enough I'd get better, now I accept it and am aiming for getting ok iykwim ?

Most definitely flowers

My medical actually went okay, when it finally happened (they no showed twice!) i had an awful cold too, and there was no parking nearby, so when i got in there i was in a right state. Poor interviewer got treated to full blown snot and tears type crying blush

Jojoanna Tue 13-May-14 09:25:26

Hello everybody,

I have been recently diagnosed with PA and have been told I need to start Methotrexate.I saw the consultant 4 weeks ago and have not yet received an appointment.

Does anybody know if this is a long waiting time ?

thank you

Hi jojo smile

Can't really answer you there, when I was first referred I wa breastfeeding so no drugs were prescribed, but on my second visit I'd done all the reading and tests etc already, so they were happy to prescribe (sulfasalazine) straight away. Same then when I changed to methotrexate, it wasnt my first visit so they were fine to prescribe straight away.

Did they take chest xrays and bloods?

Jojoanna Tue 13-May-14 12:30:59

Hi beyond thanks for your reply

i have had xrays and bloods but apparently I am waiting to see the specialist nurse for counselling before i can then have another appointment to start treatment.
I know the wait is probably due to lack of specialist nurses.
Im just so frustrated and in a lot of pain and want to get back to work.

sad any luck yet jojo? Do you have a phone number you can check with?

Jojoanna Fri 16-May-14 13:28:41

Yes hospital rang and apologised for delay said they had lost my paperwork? Anyway they saw me yesterday .

I'm going to take my first methotrexate tonight .

Good luck! Did they give you all the weird advice like sleeping on your front? It doesnt agree with me, but I know loads of people who it does work for with no side effects, so hopefully you'll be one of those smile

Jojoanna Fri 16-May-14 16:08:09

No they didn't mention sleeping on my front maybe I will try that. I am quite nervous about taking them. But hopefully I will be ok

CFSKate Sat 17-May-14 21:20:48
NotCitrus Sun 18-May-14 10:50:06

Couple questions: has anyone here applied for PIP or been on a pain management course?

I sent off the PIP1 form recorded delivery at the start of April, and figured the long PIP2 form would come pretty quickly. Nothing yet. Is this normal? Do most people do the PIP1 over the phone? My friend got me to write up answers to all the PIP2 questions so they're on my computer ready to go, but I keep having problems and then thinking "another thing to put on the sodding form".

The pain clinic consultant has suggested a few more drugs and doses but suggested a cognitive pain manag course at the hospital. Which sounded good until I realised it was 9-5, 5 days a week, for 4 weeks! I can't believe there's that much I can learn after well over a decade of crap. I get an assessment to discuss, but would be good to know if any other chronic pain people found such things useful.

And so much for getting through hospital exercise course without injury. Turns out my pelvis hates lunges.
Probably over did it yesterday but had free babysitting for a friend's party just up the road so seemed foolish not to, but was very noisy and had to stand lots to lipread/hear people, even with being offered the sofa a lot.

Pain clinic referral is on my to do list (its about a page long) for when i see the gp grin

You've prob already seen i got my pip answer up there ^ to give you an idea of timescales for it, i applied last july...!

NotCitrus Sun 18-May-14 20:45:56

Thanks Beyond. I did see the bit that said they try to assess claims within 40 weeks, or 16 weeks if you are likely to die within the year... Figured the first form was merely a formality, seeing as I'm British, not been out the country in 5 years, etc.

Read pain consultants letter back to my GP. Sort of a relief to have all my issues summed up by one person (the painful ones at least) , but also pretty depressing.

candycoatedwaterdrops Tue 20-May-14 22:53:12

I've not been offered a pain referral. I kept getting told that when the disease gets under control, they are hoping pain won't be an issue. Hoping being the operative word! AND while I was waiting for it to get under control, it's wreaked havoc on my joints and now I have damage and nothing much can be done about that. sad I do feel like my pain does get brushed over in rheumatology clinics, they focus on bloods, scans and visible observations but my reports of pain seem to be of little consequence to most. Can anyone else relate?

Definitely candy. Crippling pain in back, xray clear, mri clear, and the letter says "hopefully next time we see you the methotrexate will be working". That isnt solving the problem! You havent even established what the problem is. In fact, that isnt even true, it was you who diagnosed me with hms, yet youre so determined to ignore your own diagnosis and focus on the psa only!! Argh!!! /rant


CFSKate Mon 26-May-14 08:04:46

Fyi, the next person who asks why i dont learn fo drive now i am getting a motability car will get a poke in the eye. What part of "the dvla will not let me drive because i faint about once a month and have dizzy spells daily" is hard to understand! This isnt new news dad, I've been fainting for 14 years!! <facepalm>

candycoatedwaterdrops Sat 31-May-14 17:50:01

Is anyone here on Tramadol? From 10th June 2014, it will be classed as a controlled drug that cannot be prescribed on a repeat. You can only have a 28 day supply and must return to the GP for another prescription.

I have a (prescribed!) stash for emergencies so this won't apply for me but it may cause an increase in GP appts. Can surgeries cope with this demand, I wonder?

Not me, i did have it on repeat but it doesnt do anything for me. Tbh i'm tempted to give up on the official drugs as they all do sweet fa, and get in touch with the local dealer!

magso Mon 02-Jun-14 09:38:01

Ds needs a controlled medication (not tramadol), but I don't have to see the GP every month to get the repeat prescription - just request in writing. I hope that's not about to change! Its a chore as it is.
Anyone else low carbing - have you found it helpful? I thought it was helpful at first ( possibly due to eating no grains/gluten) but now I am not sure. I suppose I am always looking for baby steps towards being more able/well.
I was very worried I would not be allowed/ able to drive but by the time I saw the cardiologist familiar with POTs I was very much better, and don't faint unless I do something energetic- like walking too fast! It is annoying when people don't understand. I can drive (although for a couple of years I rarely could)- but I am limited on how long I can drive for and what sort of driving. Having ds in the car with me more than doubles the speed of exhaustion for me!! I have scratched the car several times when he has got too noisy for me to cope with simple parking!! I know excuses excuses!

CFSKate Tue 03-Jun-14 18:55:15

I was marginally better, severe dizzy spell sort of once a week and fainting every other month. But since i started the methotrexate (although possibly a coincidence, guess i wont know till i stop taking it) i'm having severe dizzy spells every day and have fainted three times in nine weeks (i think. Need to start writing it down again if im up for new investigation. I'll add it to the list with my pain/dislocation diary and food in/out diary!)

murmuration Wed 04-Jun-14 16:34:49

Thanks, cfskate, that's interesting. Although very hard to implement, I fear.

I find it so frustrating that even DH, who has worse CFS/ME than I, can't respect my "energy envelope". I think I'm better at being aware of my energy levels than he is, so like yesterday when he mentioned about a fair this weekend that he might be able to get a few scarce tickets to, I could tell he was disappointed when I responded equivocally -- that it sounded fun, but if I went, I wouldn't be able to do household things we're counting on getting done in the next weeks, and that it broke my 2-weekends-in-a-row rule, as I did stuff last weekend and have stuff planned for the one after. And I also mentioned that I thought I had overdone it this weekend, but I wouldn't know until Wed afternoon. Unfortunately, now I know and I did sad

I think he wanted me to be enthusiastic about this chance to go to the fair. I imagine if it were him, he'd be enthusiastic, but then get to that morning and say he's too tired and not go. But I know I'll be too tired, so I can't summon up imaginary enthusiasm for something I know I shouldn't do. I do tend to do what I plan, and I don't think I can change to his pattern. I hate that I am always raining on his parade and being so negative about doing stuff.

But I'm doing too much already and really can't do anymore. It's already a fight against my own inclination to do fun things and things I enjoy, and it makes it even harder to also have to face his disapproval of my need to conserve energy. I guess that even though he is sicker than I am, I work full time and he isn't working at all now, so he has much more "home energy" than I do and I'm always the one saying no.

Sorry for the complaining here. But it's just been getting to me, and my head is so fuzzy now I'm completely not capable of working.

And then that article really hit a nerve. Does anyone who works have a way to manage it? This bit:
"I took about a week off of work, and then went right back. And I kept showing up to work even though I was so tired that I had to put my head down on my desk for ten or fifteen minutes at a time, several times a day."

really struck me, as that sounds like me, except I never took any time off. I have told people, and have asked for a small reduction in responsibilities, but which is unfortunately to offset a larger increase. I just don't see anyway to limit my working unless I truly am incapable, as the culture just doesn't accept that. But I don't want to end up worse, as like the article's author, I feel I have a mild case now.

Anyway, how is everybody else doing?

Have an infection under my arm so went back to my gp again , now have an antibiotic cream for that.

And i have new pain relief to try. I'm on my first go of morphine. Which i find kind of scary. Have to write down my daily doses (oramoph for now) v carefully and go back in a few weeks to sort out some SR tablets.

Going to download tomorrow, so two days into taking it, and i'll be stopping for the weekend. Figure taking a huge bottle of morphine to a music festival isnt a great idea. Especially if i cant get a locker, as i couldnt carry it, nor could i leave it unsupervised in a tent.

Islander124 Fri 13-Jun-14 14:14:09

i have PSA, AS and a host of other things including bipolar and underactive thyroid... we are flying to egypt in october with dd who will be 2.i cant wait for the holiday but dreading how many of my spoons the actual journey is gonna take sad

CFSKate Sun 15-Jun-14 16:19:55
Grockle Sun 15-Jun-14 20:18:33

Posting to mark my place as I lost this thread a while ago. Will catchup later. Hope you are all ok

magso Mon 16-Jun-14 11:12:21

Hi Grockle, hope you are doing OK.
How did the music festival go Beyond? There should be priority for you for a locker. If not perhaps the first aid people could help with safekeeping?
Hi Islander, and welcome. Not been to Egypt. How long is the flight? I hope you can rest up when you get there. I find it helps to make to pack lists and then nearer the time little piles, because my brain fog gets worse in the last few days before a trip.
Murmation sounds like you know your limits well. That article was spot on. I know I tried to do too much in the early days ( and still do if I get too enthusiastic or feel obligated), and even now the physio I am seeing for my back pain wants me to come up with a exercise plan to strengthen my muscles and I really don't think she understands CFS so I will go back and say that at present I can only hold my own, or build up microscopically slowly. By the way can any one help me with an exercise plan? I was doing some low level pilates to build up my core to help my back, but the only strength exercise I do is- well- doing more in the house and walking further. It seems a shame to use spoons on exercise that achieves nothing but fitness. But slowly I am getting fitter, and having shorter rests, and stopping before my legs betray me!

I've had a few set backs recently but seemed to be just back steady - hopefully. The good news is I have added the spa to my leisure centre membership so I can use the steam room sauna and warm pool! But only used it once before breaking a toe so am waiting for that to mend. I know its a bit extravagant but as its a new facility I got a very special offer. I am hoping the steam will help with my breathing difficulties and warmth will unstiffen the rest of me. There's always hope. Also I have been lowcarbing (diet) and have today reached my target weight (the weight I was before I got ill). However I think I have lost muscle and gained fat so need to keep on a little longer.

Hope everyone has enough spoons today.

murmuration Mon 16-Jun-14 12:42:23

Good to hear from you grockle. Let us know how you're doing.

Welcome islander. We're going to take a 2yo on a flight to the US this summer. The whole trip is going to be a massive spoon-drain -- but my Mum is seriously ill and I can't justify putting off a trip until the winter just in case it's my last chance to see her sad

Congratulations on the weight loss, magso!

I'm trying to lose weight, but it is hard. I keep having to forgo exercise for lack of spoons, and as part of my new plan is that I barely have any supper (I'm rarely hungry in the evening, I tend to need a snack about 5pm and then nothing), DH and I keep having conflict over this -- he agreed to it, but it turns out he's basically incapable of making himself (and DD) food unless it's already packaged up, and I haven't been able to produce the needed 10-15 leftovers on the weekends due to overdoing it. Yet if I cook supper, then my body wants to eat some. And even if I just smell it -- I don't entirely understand, but I know I'm not actually hungry as I have no desire to eat until I smell DH's warmed up food and then my body does all sorts of tricks like make me dizzy and freezing and weepy in an attempt to get me to eat. I've actually started shivering with clacking teeth -- does this happen to anyone else? Or is my body the only one that shuts down its metabolism to try to force me to eat? And doing calorie counting, I am definitely getting more than enough calories in the rest of the day. In fact, I think I need to cut down there, too.

Turns out that DH slept through the fair on the weekend. So it didn't matter that I thought I couldn't go -- this is what I hate! He gets upset with me for not wanting to go, whereas he might still not go for his own energy reasons. I wish he could respect my awareness.

beabea81 Wed 18-Jun-14 12:35:36

Hi everyone,

I was on DLA but because Royal Mail lost my special delivery renewal forms last August, the DWP made me then start the PIP application instead. The DLA forms were then delivered 2 weeks later, but DLA told me it was too late and I had to transfer over to PIP. Then I waited 8 months for my PIP home visit medical, but it may be less now and may well be a shorter wait if you are able to go to an assessment centre. We're now waiting for the decision, all you can do is keep phoning them and chasing them : (

I'm on Tramadol 4 times a day so shocked to hear I'll no longer be able to have it on my repeat list! I use the online ordering service my GP surgery provides, but you can only order repeat meds this way - I guess that means I'll have to take a trip to the surgery and see my GP every month to get my Tramadol then?! How ridiculous : (

I'm Bea btw : ) Have seen this thread before but didn't realise it'd moved to the PwD section - I've had M.E/CFS for over 20 years since I was 11, I also have a pelvic disability caused by pregnancy with my dd 3 years ago and osteo in my back so generally everything is very weak and painful. I'm struggling to cope with my dd at the moment, I don't have the strength to stop her doing things or pick her up and if I try to the pain is just searing in my pelvis and back. Weight bearing is basically impossible for me. Looking after her is pretty impossible by myself at the moment as she just won't do ANYTHING I need her to. Runs away knowing I can't catch her, won't eat, brush teeth, hair, get dressed etc and I don't have it in me to do anything about it : ( The other day we went to a friend's and she wouldn't leave. My friend had to put her in the car for me and she was naked because the kids had been in the paddling pool and she'd refused to get dressed. My friend tried to help me but dd was just kicking and running off so we gave up. Then as soon as she was in the car she just un-did her seat-belt and jumped in the front seat. She only got in the back again for the journey home because I said her friend couldn't then come to play at ours next week and she now knows I'll follow through with threats. But it's exhausting, and I'm seriously thinking of finding someone like a mothers help or PA because I have no idea how I'll cope with her on my own once my dh starts his new job in 2 weeks and is gone 12-13 hours a day : (

Hi guys

I'm suffering. Not taking my scooter or a wheelchair this weekend was a big mistake. I figured that while i would be tired on crutches, they'd be easier to manouvere if it was muddy. Which it wasnt.

So I'm still recovering, and DH is miserable that I had 'a holiday' and all I'm doing is moan about how bad it has made me sad

murmuration Thu 19-Jun-14 15:50:58

bea, that sounds so tough. There's no shame in getting a mother's help if you can afford it -- it sounds like it would be worthwhile!

In the meantime, can you try to get your daughter to play games in a way that helps you? For example, "I bet you don't know how to brush your teeth, do you?" And see if she 'rebels' by showing you she can do it? Sorry if that's a silly idea, and disregard if it's obviously not right, but I'm trying to think of something that might help. I find I spend a lot of time talking to my DD (almost 27mo, so a little younger than yours, I think?) and it really helps to get her to do stuff if I challenge her on it.

Sorry to hear that you got so tired out, beyond. And it seems your DH doesn't understand -- a holiday for us is a lot of work! Do you think he ever might get it? I hope that you recover soon.

murmuration Thu 19-Jun-14 15:52:41

Oh, sorry, that bit about talking doesn't make sense, does it? I mean that I find I tend to talk DD when I can't do things like pick her up or get up and play with her like other Mums do, but if I keep up an almost constant chatter, it keeps her attention. It does get weary, though!

magso Sun 22-Jun-14 12:33:29

Bea that sounds really hard. Getting help with housework and childcare was the start of getting slowly less ill for me. Ds (much older than your dd but because of his LD and ASD is more like a pre schooler emotionally and self care wise- just much larger) became extra oppositional and demand avoidant once I became ill, he really wanted me do everything for him, (he's always needed to feel in control)- it was as if he was trying to get his fit mummy back, rather than the weak, forgetful, slow one than had changed places with her! I have no experience of parenting an NT child - only a very oppositional autistic one! However things did improve once someone else was routinely helping with things that had to be done - like the dreaded homework!! I put up picture charts (with wipe clean surfaces so we could stick stars on) with the order of dressing and washing in the relevant rooms, and left him to dress himself, (with me close by to intervene before frustration caused a meltdown) noting happily (star on chart)each stage achieved (pants on - well done and star on chart) and helping discreetly (with the hard bits). Eventually I was able to slowly do less (cheering/prompting/helping) and now he can dress himself without fuss - well he is 14! He still needs help with socks occasionally- but we can have fun with that. He likes a challenge so I added a kitchen timer to beat (obviously would only work if a timer does not add stress). He also liked to compete against me in a fun way. He tends to dig his heels in as soon as he is asked to do something! He needs lots of warnings so that he knows when things are needed or changes are coming. I let him know that he will need to do something (ie put his shoes on to go out) in 5 minutes time. Then he is less upset by the need to change what he is doing.
I realise that a tired 3 year old is quite different but just in case any of the above has ideas that click with your dd well hopefully something will. I felt very alone with Ds challenging behaviour and its even worse when ill and with low energy!! thanks

daisychicken Wed 25-Jun-14 21:05:21

Hi all, I lost you when the new thread started!

I'm struggling... even on my "good" days, I don't feel good. I have a doctors appt on Monday which has taken me 4 weeks to get and I'm hoping we can change my meds.

Can anyone tell me about scooters? I'm struggling to walk any distance now and we are thinking that maybe a scooter would be useful. I'm just wondering if there are any disadvantages or things we should be aware of and if "light" scooters are light enough to lift..!

Bea - if you can afford to get help then get it, I think it would be worth every penny. I agree with Magso's comments re starcharts and I also found a "picture timetable" for bedtime/getting up routines helped my ds1 with getting things done when needed - it was just pictures in order of when things needed to be done ie in the morning: eyes open, breakfast, teeth, shower, clothes etc DS1 responded well to that alongside a star chart. Is your dd in nursery/preschool or will she start in Sept? The routine from that might help too.

murmuration Thu 03-Jul-14 16:22:00

Ugh, just back from second meeting with specialist. Well, they're done with me. "Nothing physically wrong". Time to think about graded exercise and talk to a psychologist.

Not sure what that's going to do -- not give me energy at least. I had hope since I don't have classic ME symptoms, I might have some hints of something else. But apparently not.

It's very frustrating that since I'm holding down a full time job and manage to squeeze by in my life, that it seems I don't really seem to have anything 'wrong', at least by their standards. Yet my life consists of nothing BUT my work, and I'm not really even managing that.

Sorry, just venting, and as I'm off work for the appt and DH is out with DD somewhere, I'm going to take this chance to nap.

magso Tue 08-Jul-14 09:22:24

Murmuration is the psychologist part of a CFS team? Our local CFS team had 3 team members from different specialties (physio/ OT/psych) and they all seamed to have similar roles - that is help us the see what needed to change (step by tiny step) in our lives to get more well. For me (allocated the OT) that meant accepting I was ill, and learning to do less - in order to not get so exhausted I literally keeled over, or could no longer speak/ eat/ stand. I think another person reminding me I was' ill not lazy' (and that pushing myself did not seem to be working) was helpful. I had to record what I was doing each day - so I could see for myself where I was over doing it, and think ways around it.
Before I was Dxed with CFS by the specialist, I was sent to see a pysch who tried to DX me with sev depression - a dx I never accepted because I knew that I wasn't!! (I also have POTS - undiagnosed at the time so would loose consciousness sometimes - always related to physical things like standing still too long, or trying to drag ds back from a road - most inconvenient!!- once I knew what to do to avoid fainting - life got much easier).
I must admit I really wanted to find a DX that was not CFS/ME - ands its really disappointing to be told that all the blood tests are 'normal - ie no much better understood and treatable conditions are to blame for the symptoms! Its kind of better to see it as - OK -they've ruled out XYZ. Its not that there is nothing physically wrong - more that the tests have only ruled out things that can be ruled out by present tests. ((Hug))

murmuration Tue 08-Jul-14 10:50:39

Thanks, magso. He was a fatigue/lupus specialist. I was too tired and fuzzy headed to think clearly, I'm afraid, so I don't even know what tests they did sad I had been under the impression after the first visit they were going to do a 'standard screen', which my GP had already done but they did not have access to, expecting to find it normal, and then investigate further. At the second visit it felt more like, "hey, ho, we're done with you." I do hope they did more than my GP originally, to rule out more stuff.

I find it weird that I have a known dysautonomia, and yet they say I don't have anything physically wrong with me. Clearly I do, as without medication I go tachycardic with mild exertion. I have a sinking feeling no one believes me on this one, as it is just so weird. My heart rate regularly goes over 200 without meds, yet that probably sounds so outrageous that maybe they figure I'm making it up. I suggested to my GP that I could stop the meds so people could measure it smile The last time they did (in the States) I had a whole floor of nurses over to look at my 198 bpm, as they had "never seen a heart go so fast yet without abnormalities before".

I've been to the GP, and let him know I was disappointed. He will refer me to a CFS/ME nurse, who is meant to be able to help me manage fatigue, which maybe will help me stop crashing so much. He's also going to wait for the letter from the fatigue specalist, and then refer me to a neuro. There is just a niggling worry about MS, which would be massively unlikely as I would have had to have had it for about 10 years now in which time it only progressed microscopically (there are some weird neuro systems that precede my fatigue, some of which have gotten mildly worse over the years), yet it would be nice to rule it out so I could get it out of the back of my mind. We'll see if anyone actually sends for me an MRI or not.

They do keep talking depression, which is frustrating as I'm sure it's not. I've had depression, and I'm not depressed now. This morning I took about 5 online depression scales, and got things ranging from "absolutely not depressed" to "likely have a problem" depending on how many questions they had about mood vs fatigue. Is it possible to depressed but not unhappy?

magso Wed 09-Jul-14 09:54:49

Sounds like you have your next steps worked out and a lovely GP murmuration!
I think it is possible to not be aware of depression - but if you have a known dysautonomia its incorrect to imply there is nothing physically wrong! Depression can cause exhaustion and result in deconditioning - but so can other things. Being ill and having the HCPs around you not only not understanding how to help but assuming 'there is nothing physically wrong' is however enough to make any one depressed!!! Chronic illness and low mood can easily go hand in hand.
My CFS specialist explained that my POTS was almost certainly part of my CFS. I however think I have always had some degree of POTS -(was a fainty teen) just only problematic when ill (CFS), deconditioned or dehydrated/fasted. So I think he is right - but I also think I may have been predisposed to not be very good at autonomic control IYSWIM. I suspect we all have weaker bits to our constitution (like some always get tummy troubles or chest infections) and that's one of mine.
I hope the CFS nurse referral is helpful, and the MRI is forthcoming.

daisychicken Fri 11-Jul-14 11:17:15

Those depression tests are not great... I've just tried one and questions included:

do you get to sleep ok & stay asleep? well yes, because I take amitryptiline but without it no..
Have you been feeling tired/or had little energy? Yes... it's one of the symptoms...
Do you feel guilty with family and friends or a failure? Well, yes because I can't do the things I used to do with the kids/housework/dogs/work but no, because I know it's not my fault
Do you have trouble concentrating? Well, yes but I'm exhausted & distracted with pain.... doesn't everyone struggle then?

So I figure it's easy to adjust your responses and get the result you want plus someone scoring the test may take the response they choose when in fact it could be down to something else...

I've just come back from my GP (not my usual GP but I've seen this GP before) and feel totally demoralised and thrown on the scrapheap. I tried Pregbalin after my last appt and had an allergic reaction, I've tried several other meds but either notice no effect or the side effects are awful. GP said there's nothing else she can give me and that I will have to manage with co codomol, amitryptiline and tramadol (if I can deal with the side effects). She's referred me to the pain clinic but then said you have obviously worked out pacing and know stress etc isn't good... etc which the pain clinic will go over with you - so I can't figure out whether it will be of help or not but... I have to wait 12-16 weeks for an appt to find out. And then she said "it's psychological and all in the mind"....

Summer hols start next week and as much as I love having my dc home and I'm relived that the routine of school and afterschool clubs are reduced... I'm actually dreading it cause I just don't know how I'm going to manage to do/take dc to activities, have dc friends round etc.. as I won't be able to rest as much as I do now. I'm struggling now.. so how will I cope for 6 weeks?

I came home from appt and cried... sad What has everyone here planning to do over the hols?

magso Fri 11-Jul-14 22:26:47

Oh Daisy I am so sorry your appointment did not go well ((hugs))- and that its such a long wait for the clinic referral. Gps have very broad knowledge but are not always experts in some of the more puzzling conditions. Pain (and fatigue) is such a difficult thing to live with. However pain clinics know that. There may not be magic wands but they are experts in pain management - and the difficulties that run along side chronic pain and illness. I honestly thought I had sorted out pacing - and I was really not at all hopeful referral ( to the chronic pain and fatigue team) would help. Indeed I thought at the time it was rather a waste of time - but slowly I did get somewhat better, but it took someone to point it out to me. And I suddenly realised that I was able to do things that I could not have done a year before. It also helped having someone on my side! I think it helped not to be too hopeful so perhaps I should not say too much - but it was helpful.
Holidays - hmm well ds has 8 weeks coming up because his sn school is being moved and the new building is delayed, so he has an extra week on either end of the standard holiday!! However he has 4 weeks of play-scheme with 3 days ( well 10 - 3pm) most weeks so that is amazing - we usually only get 4 sessions in the entire holidays!! They will take him swimming and to the park- things I cannot do. the first week will be difficult as it is before others are on holiday. Ds wants to go to Legoland and has cut out a token to get in free ( impressive for a child with his level of LD) so I think I will need to get in training!! I might see if a classmate can go. DH is taking the last 2 weeks off for our holiday.
I hope you get some ideas. I can't remember how old your ds is, but I find the childrens' showings at the cinema (if you have one near by) can be a relatively restful treat, without costing a small fortune.

daisychicken Sat 12-Jul-14 10:12:31

Thanks magso I'm glad to hear that the pain clinic helped you. I've said I'll be open minded but yesterday I'd just had enough. I've actually made an appt to try and see my usual GP and to ask about the Fibro clinic in Bath - from the website, they use a multidisciplinary approach but won't see you if you've seen the pain clinic so I want to see if we can refer there instead as I wondered if being specialised, they might be the better option.

My two are 12 and (a month off) 10. The 12year old can go off with friends but the 10 year old is just starting to do that this summer so I will get some time when they are out playing. The cinema is on our list along with swimming (them not me) and other activities where I can sit and have a coffee/tea/ice cream/read a book so I still have to be active in some form but I can sit. It's the days out I'm dreading and I have promised 2 "big" days out. I'm sure once we are at that point, I'll be fine and will just keep trundling on(!)

CFSKate Fri 18-Jul-14 09:55:35

This is about ME/CFS, but it talks about POTS as well

Two Subsets
Dr. Bateman believes we have enough data to describe two subsets in ME/CFS:

POTS Group
An infectious onset group that develops autoimmune antibodies to the receptors that control the heart rate and blood pressure; i.e., the POTS patients.

Neuroinflammatory Group
These patients – a larger group – have widespread inflammation in the brain causing fatigue, reduced functioning, orthostatic problems (but not nearly as severe as in the first group), problems with sleep, cognition, and neuroendocrine problems.

There's a lot more detail in the article

MyFairyKing Sat 19-Jul-14 21:54:55

ME/CFS may very well have an autoimmune component but I don't think it's helpful to suggest a direct comparison by citing 'cicrumstantial criteria'. The bottom line is that while there have been no auto antibodies identified, it is all supposition.

magso Thu 24-Jul-14 23:38:30

Hope everyone is manageing now the schools are on holiday. I took ds to legoland at the start of the week- pleased I managed but now paying for it- which is rather foolish as its only the start of the holiday! I had forgotten just how much walking is required! Fortunately we got a disability pass (ds has sn but it is the combination of the two of us that makes days out so difficult) so didn't have to queue much. I had thought we might only manage the star wars Lego display near the beginning and had warned ds of that, but the pass allowed us to do a bit more. I really struggled in the dark of the star wars display to stay on my feet!
Has anyone tried curcermen tablets for inflammation and pain? I have heard it can be useful but could only find turmeric tablets locally - don't know if it's worth ordering on line.

Hi, I hope I'm okay to join in here. I have Complex Regional Pain Syndrome in both arms, hands and shoulder, upper back, neck, lower back, left hip, leg and foot. Got it when i was 14 after an assault that left me with a broken wrist. Started in my left arm and has spread since then. I take the max dose of Pregabalin every day, OxyNorm liquid for breakthrough pain, Paracetamol, Oxycodone tablets twice a day for pain management and baclofen for the muscle spasms also have two types of laxatives for the blockages that the morphine based medicines cause. I'm constantly exhausted, I have painsomnia, walk with crutches, sometimes have to use a wheelchair. Every day is absolute agony for me. On the bright side, I start a degree course in September and long term will be moving to London (once I finish my degree that is) as I'll have much better job prospects down there. Hope everyone on thread is not suffering too much today smile thanks

Eventful few weeks. I now have gabapentin added onto my list. And have found a brilliant dentist who believes me that anaesthetic doesnt work for me and gave me something different to try - so thats what local anaesthetic is supposed to be like! grin have been have dizzy attacks almost daily, still waiting for syncope clinic referral (need to chase that up)

Also, i have my genetics appt in the morning. And my wheelchair came today, having given up waiting for my referral (for the sake of £60 its not worth the pain!)

Hope everyone is okay btw flowers

magso Thu 31-Jul-14 20:41:26

Welcome OnelittleLady. Hope the degree course is interesting, and your CRPS doesn't hold you back.
Beyond glad you have a dentist that listens and has found something that works for you. I didn't see a syncope clinic ( I don't think there is one here) but the cardiologist gave me several pointers that have been helpful and allowed me to get fitter ( I used to just faint if I tried anything remotely mildly like exercise - or tried to stand still), so I hope your clinic can help too. Things such as jiggling my legs (feet up and down) when standing or sitting still, and clenching various muscles. How do you feel about the wheelchair?
I am still recovering from my day in LEGOLAND. I had forgotten just how sore and weak I can get. I'll get there in the end!
Hope everyone else is managing. Ds has a fair amount of respite/ play sessions, but I find not being able to rest for long (the play sessions are quite short by the time I take and collect him) difficult. But at least they run off some of his energy!

daisychicken Sat 02-Aug-14 20:00:02

Beyond hope the genetics appt went well?

Well the first week of the school hols whizzed by and tbh, I kind of coasted on adrenaline... it 'hit' me on the thurs night and I've been barely able to walk since... am just plodding on... This week ds2 is doing a cookery course so I will get 3 2hr coffee shop breaks waiting for him smile. Am seeing my GP (hope they don't pass me on to a student this time) and asking for referral to the Fibro clinic in Bath plus I'm hoping she can suggest a different painkiller to try...

I'm okay about the wheelchair, had already accepted i am using one sometimes and had applied to the nhs for one with them, just got sick of waiting (for one that i've been told is not really fit for purpose anyway!) so bought my own.

Genetics appt wasnt great, the counsellor didnt seem to know much about eds, was just filling in a questionnaire with me. Something about her made me feel very much like a hypochondriac, but im hoping the 'proper' geneticist will be much better.

Onelittlelady, what are you studying? I'm mid way through a human biology degree with the ou smile

ItHasANiceRingWhenYouLaugh Sat 09-Aug-14 17:38:16

Hello fellow spoonies. grin NC regular/lurker here with CFS. Am currently struggling with two related issues.

1) I think I need a mobility scooter or something. Used one during a holiday and it made so much difference. Can I ask what models and makes people have and how they get on with them? Happy to have PMs, of course.

2) Getting one is an emotional decision and seems very public. I look normal and indeed well most of the time. I've never posted about it on FB, for instance, and I feel like it is coming out in some way. I'm wondering whether to post a statement on FB about it, maybe with a link to the spoon theory. How do you all treat your illness and social media?

daisychicken Sat 09-Aug-14 19:04:19

I'd be interested in mobility scooter info as well please. I agree about the emotional decision but it's also how others would react - sounds daft but most people don't know I have any problems and those who do, don't realise how bad it actually is so I feel nervousness about comments I would get and any extra attention (I don't like attention to be focused on me!) but as friend with similar difficulties has said... "You have to do what is right for you AND your family - so if it means you will be able to do more with the family, then it's worth it". I'm looking on ebay for a secondhand scooter - has to be lightweight as will need to live in the car... but how to choose the right model is confuddling!!

I got to see my GP.. She is going to refer me to the specialist clinic in Bath but I need to have the blood tests re-done plus some extras first so a bit of a wait while I get those sorted but it's in the process. No stronger painkillers... apparently the next step up is morphine and she feels it would be better if I can try and manage without for as long as possible - I do see her point and most days I agree... but not on the bad days(!)

ItHasANiceRingWhenYouLaugh Mon 11-Aug-14 21:21:17

Beyonddid you say on another thread that you got an Elite Go Go? How is it?

Heres mine... (Its the go go elite traveller)

(Bought it from careco too, cant recommend them enough not affiliated in any way! )

Its great - for going up and down the kitchen. I havent been out on it yet (dh likes to whinge about this!) im paranoid its going to break down so wont go out on my own, as well as worrying how people will react, and havent been for a "walk" with my family recently. Have become quite a recluse sad once i do it, im sure i'll be fine, its just that first step...

CFSKate Mon 11-Aug-14 23:24:51
daisychicken Tue 12-Aug-14 08:43:10

Beyond do you reckon you could dismantle/put it together/lift all the bits yourself? What ever I choose would have to live in the boot of the car... I would mostly have dc to help but there will be times/come a time when I don't... I can't visualise how feasible it actually would be if that makes sense!
Can you just go down the road a bit and then home or to a local park and back the first time or so? Perhaps when DH is home 'just incase'? I'm sure it'll be fine smile Its the reactions of others that does concern me I have to admit... but I'm fast coming to the conclusion of 'so what' if it means I can spend time out with my family..

I dunno, its quite heavy together, but havent tested the individual pieces. I'll see if i can get dh to help me dismantle it later and let you know. My wrists are bad though, so thats gonna make it more difficult?

ItHasANiceRingWhenYouLaugh Tue 12-Aug-14 09:40:04

The one we had on holiday was pretty heavy. But I could do it myself at a push. The battery is heavy but comes out to be dealt with separately if need be. The seat also comes off. But the frame and handles are still pretty heavy. I think they are about 35 ish kilos altogether.

It was a nightmare getting it down stairs for the tube, took two strong men. So don't do that. I learned a LOT. grin

I did get a few long looks and double takes but I expected that and just cheerfully ignored them as much as possible, got on with chatting to kids etc. I expect I'd get used to it.

Just realised i didnt tell you all about my bad jaw. Weeks ago i had mystery jaw pain, was keeping me up at night and nothing helped, so saw the ooh gp who basically said its nothing thats gonna kill you and sent me on my way (apparently a heart attack can manifest as jaw pain!)
Went in for routine bloods a week later and phelb told me i had to see a gp as it was still bothering me. Glands up by this point, but werent to start with, so he said its probably an infection, come back in a week if it doesnt pass. Not in the right place to be tmj arthritis and not my teeth (dentist also confirmed this since)
It comes and goes for the week, so i see my gp anyway, and she gave me the gabapentin and ran blood tests thinking it might be secondary sjogrens.

Went back in yesterday, and it had come back on the other side, so could describe it to her while it was there. Said me teeth all on one side feel tender, but theyre fine when i poke them, and the tenderness goes right along the bottom of one side of my jaw, and right up to my ear. Then the pain that comes and goes feels like someone stabbing my jaw (right in the dip in front of my ear lobe) with a hot poker and wiggling it round.
GP says bingo, that sounds very much like trigeminal neuralgia, keep upping the gabapentin.

So, now my hypochondria is going off on one...
Trigeminal neuralgia is apparently rare in under 50s (im 28) and is often the first spotted sign of ms. Ms also seems to be more prevalent among people with eds.

ItHasANiceRingWhenYouLaugh Tue 12-Aug-14 10:24:24

Oh, Beyond. sad To be honest, I assumed that I had Ms when I first went for tests. I had numbness weakness and tingling down one side. But nope, no lesions, just a narrow vein in my neck which they are treating as a poss cause of my symptoms. And which is also a possible cause of Ms. Bodies are weird.

My one arm spasms too, ive already told my gp that and she says its just cause of the arthritis/hypermobility. Thats what im worried about, that so many symptoms cross over and are already attributed to something i officially have.
Thats what i worry about, its not so much having something in particular, if thats the case i just have to deal with it (i do this a lot, i get very anxious about my health (and my kids). But it that cause of anxiety or cause ive actually had something wrong all along that took til 27 to be diagnosed!). Its that it'll be missed, or i'll be written off as a hypochondriac.

kinkyfuckery Wed 13-Aug-14 20:29:42

Can I join in here please? Saw this thread linked on another post.

I am 30 and have a working diagnosis of Fibromyalgia. After years of to-ing and fro-ing the doctor I have recently been seen at the pain clinic. Consultant there is not convinced it is Fibro and my next step is to wait for Nerve Conduction Studies to be done. Neurophysiology advised 4 month wait, so looking at end of October but still awaiting appointment. Consultant also unsure why GP hasn't done more testing and ruling out of other conditions.

I take 600mg pregabalin daily, slow release tramadol at night, and 1-3x 50mg tramadol during day as/when needed. I also take 20mg citalopram.

I am currently in fatigue phase. Got up at 7 this morning, got the kids sorted for school, relaxed on sofa for morning before sleeping from about 12.30-3.10 (miraculously woke up just before having to collect DC from school!) They left with their dad about 4ish and I've been relaxing on sofa since. Have been struggling to stay awake for the past hour or so, but hoping to try to stick to a routine now kids are back at school.

Would be nice, and helpful, to have people who understand.

kinkyfuckery Wed 13-Aug-14 20:35:01

Also, just felt like mentioning.... it made me feel sad thinking that I am posting on a thread entitled 'disabled parents'. I guess I am still coming to terms with that being what I am (becoming?) Recent months of varying fatigue and pain are starting to make it evident to me that I would be unable to work if I needed to though sad

ItHasANiceRingWhenYouLaugh Wed 13-Aug-14 23:03:51

While I was using my mobility scooter on holiday my daughter kept asking whether I was disabled and it made me so uncomfortable. sad

Hi kinky! Welcome to our humble abode flowers

I've said it before, but I'm owning the disabled label smile if i dont treat it as a negative thing, maybe others wont see it as a negative thing, and just be accepting of my body being a bit wonky at times. Took me a while to get here though.

Took my scooter out today. Only one negative comment, from an elderly disabled relative of mine, who said "now you have one of them, you wont bother walking anywhere and will get fat". Yeah, cause before i was walking so far when i was stuck in the house for months on end hmm Would have thought someone who is so bad mobility-wise that they have to drive everywhere would be a little more understanding, but meh.

My scooter is fab. Carried me and two kids (one on the front, one on the back) up and down some big welsh hills grin

kinkyfuckery Thu 14-Aug-14 13:20:42

My kids would love it if I ever got a mobility scooter. My grandparents have them, and the kids love hopping on their knees and going for a wee cruise around the block hahah grin

Beyond do you think your relative was projecting her own concerns and insecurities on you?

Perhaps yeah smile sadly, his decline in mobility did partly come because he wasnt walking, and now he cant. When he had his bypass, he moved in with my parents to recover, and every day would walk up and down their street. When he went home, he had to look after my nan again and his own health comes second

It was the "wont bother" that hit a nerve. Probably also because at one point my nan asked whose it was (she has alzeimers, so i already have to explain a few times why i cant walk when i visit) and he said "its beyond's, shes lazy" sad

kinkyfuckery Thu 14-Aug-14 14:45:33

Sorry for assuming it was a female, not quite sure why I did that.

He sounds like a bit of a lost cause, tbh

I didnt notice the 'her' smile

I do notice a particular attitude from other people in that side of the family. Almost that having someone in the family with a "real" disability coupled with previous knowledge of me being a drama queen/hypochondriac means i cant possibly be as bad as i make out sad

kinkyfuckery Thu 14-Aug-14 20:31:32

Invisible illnesses are so difficult to 'convince' people if they've never experienced one themselves. I sometimes wonder if people would take me more seriously if I had gunshot marks all over my body wink

ItHasANiceRingWhenYouLaugh Sat 16-Aug-14 11:49:56

Okay, got the mobility scooter today. I got a Calibri in blue. I got it from a local mobility centre and it was no more expensive and I got to try a few out. This went a bit faster than the others and came in different colours.

Cried a fair amount on the journey home but also started thinking about things we could do that would have felt too tricky before, things like local country park, National Trust day out, etc. Little things but huge cost to me if they are different than expected or we need an extra trip to the loo half way round.

So. Mixed bag today but will be good.

murmuration Sun 24-Aug-14 17:40:23

Hi all. Been offline a bit, and don't remember my status last time I posted. But status now is GP has referred me to neuro and CFS/ME nurse, and old Dr from US is trying to look up stuff for mr to write a letter that I can show the neuro -- hopefully his written report will have more of impact than my verbal one.

Holiday visiting family with 2yo tired me out, and then I got a stomach bug first day back at work. Still weak from that and next 3 weeks of work will be among the busiest all year. A bit worried I'll crash and dramatically mess something up sad

ithas, I wonder about how to tell people too. Haven't posted anything on Facebook or anything, and I don't really know how to say things. Especially since about half the (very few) people I've told in person have either seemed to not believe (oh, of course you're tired, you have a 2yo) or have actually said they didn't believe in CFS.

kinkyfuckery Thu 28-Aug-14 16:41:39

NiceRing how are you getting on with your scooter?

murmum how are things going at work? Are you managing to keep things under control?

I have had really intense nerve pain the past week so visited a locum GP today. He suggested the only change of meds could be to change me from the pregabalin to 3600mg of gabapentin! I'm reluctant as it seems to have more side effects.
My friend (who came with me to kick arse) asked about an MRI and he said with my symptoms they wouldn't know where to target the MRI so it would need to be full body. I asked why they wouldn't do that - and he has finally referred me to neuro! Yay!
Found out last bloods were done in July 2013 so I've asked to get them redone, getting them on Monday. Also going to check my Vit B12.

murmuration Thu 28-Aug-14 17:40:16

Good news about the MRI, kinky. I hope the pain doesn't get too bad sad And by the way, welcome!

So far managing at work, although I just sent something off that is supposedly done and I'm not really sure. I kept catching rather sizable errors right at the end, so there could be more I didn't see. But I'm already past the supposed deadline (yesterday!). Oh well, if there are mistakes I'll just deal with the fallout later.

I worked from bed at home today, as I got really ill after eating breakfast. Thought I'd go in for the afternoon, then ate lunch and got ill again. I think I may have to eat in really small quantities for a while.

Tomorrow I have DD all day as DH is at a conference -- will be taking her to/from swimming on the bus. I hope it doesn't tire me out too much!

kinkyfuckery Thu 04-Sep-14 21:15:03

So my bloods came back all satisfactory sad For most, that would be good news; for me it just leaves me a little... lost

murmuration Thu 04-Sep-14 22:06:50

Yeah, I know, kinky sad I start to feel a bit like it's all in my imagination if they can't ever find anything wrong. And I so want to believe that there is nothing wrong. But then I try to live my life and it doesn't work.

Old Dr sent me a draft letter, and will be printing it up on letterhead and everything so I can give it to my GP and neuro. I didn't realise at the time, but he had thought I might have had POTS. I'll have to go read up more about that.

I tried to get the last specialists to test for POTS, but as they released me they obviously decided not to. Maybe this letter will help, as I suspect they just didn't believe me when I said my heart rate reached 200 regularly.

FrancesNiadova Mon 08-Sep-14 10:41:47

Hi, my 1st post in this new group.
I did a trimalleolar fracture of my ankle 3 1/2 years ago. Since that day I've been in constant pain. On a good day it's like white noise, always there. On bad days I struggle to walk. I use crutches now & have a wheelchair for bad days.
I had my ankle fused in April this year, (I would have had it done sooner, but breast cancer, mastectomy & treatment took priority). The ankle fusion was supposed to be the fix-it. I can now take my air boot off, but when I do my ankle swells so much & is really painful. I haven't had a full night's sleep since I broke it & last night the pain was awful.
I take paracetamol or paracetamol & codeine that I buy over the counter. I was prescribed gabapentin, but it made me feel awful.
Can I ask how you manage your pain & is it worth going back to the Dr? (Oh I am on Citalopram because I'm depressed, apparently!)

CFSKate Sat 13-Sep-14 00:20:15
FrancesNiadova Sat 13-Sep-14 09:04:45

Love the blog CFSKate!

Fallen off my tio for some reason?

Rheum has stopped my methotrexate and started me on leufenomide, in the hope that it does something. She says when my psa is under control, we'll be able to see which problems are caused by my hms.

Still waiting for my OT appointment. Have started buying things that i was waiting for my assessment for. Toilet frame and bed side (as i got stuck in bed the other day) are on their way to me now smile

Thesofaismyfriend Sun 14-Sep-14 21:16:39

I have been directed to this thread and hope that it can help me. Have recently been diagnosed with probable chronic fatigue by my GP and referred. I have previously been seen by Neurologists for atypical dystonia - they were obviously looking for MS but my MRIs were clear.

I am just hoping to talk to people who understand the tiredness, and in my sad moments, the feeling of it being too hard.

By the way, I am not normally this low - just been a hard day. It is my DD's birthday and I had to spend the afternoon in bed as I couldn't physically carry on.

sad we understand sofa flowers

How old is your dd?

Thesofaismyfriend Sun 14-Sep-14 21:39:53

Oh thank you for answering, she is 3 today. I also have a DS who is 5.

I have got my appointment with the Consultant on Tuesday - do you have an tips on what to ask / say?

kinkyfuckery Mon 15-Sep-14 10:45:22

We understand completely sofa It's difficult for people who haven't experienced it to understand - despite wanting to.

Did your DD have a nice birthday?

Thesofaismyfriend Mon 15-Sep-14 11:33:07

She did, thank you. They are used to 'Mummy needing a rest' and I managed to be fully present for the first part of the day.

Thesofaismyfriend Mon 15-Sep-14 11:33:07

She did, thank you. They are used to 'Mummy needing a rest' and I managed to be fully present for the first part of the day.

FrancesNiadova Wed 17-Sep-14 04:52:05

Can't sleep again because of the pain. I can't remember the last night's sleep I had. Just so fed up with it all.
Sorry to whinge. sad

murmuration Wed 17-Sep-14 10:27:29

Sorry to hear that frances. But whinging is what we are here to hear, so go ahead...

Welcome sofa. I'm in a similar situation, although a bit reversed -- after a fatigue specialist couldn't find anything wrong, I just got referred to a neurologist who will go look for MS.

Glad you DD had a good birthday, and that she understands. My DD is 2.5, and has recently picked up saying "I'm tired, I need to rest" when she doesn't want to do something. It makes me feel bad because I know she's getting it from me, but doesn't quite understand.

Somebody I know recently shared this link: Blue light article

I've been having a terrible time sleeping, and I think I may try to find some blue-light blocking goggles to wear in the evening to help me sleep. But I'm having trouble finding them for sale in the UK (I'll need to wear them over my normal glasses).

FrancesNiadova Thu 18-Sep-14 04:50:53

Glad to hear that your DS's birthday party went well sofa. How did you get on with your consultant?

I had my 1st physiotherapy yesterday, (since the most recent op in April). That was good, in loads of pain now of course! I tried to get an appointment to see the Dr for pain meds/management, but there's no appointments until next week! confused

FrancesNiadova Thu 18-Sep-14 04:55:36

Your blue light article was really interesting murmur, thanks for that. I hope you find your goggles, please let me know how you get on/if it makes a difference

murmuration Thu 18-Sep-14 12:56:19

Well, I've just ordered this item. I'll let you know how it works!

FrancesNiadova Thu 18-Sep-14 20:11:44

Looks interesting, I hope it works.
I got some pain meds from the GP today, hopefully I'll get some sleep tonight.

kinkyfuckery Mon 22-Sep-14 13:31:01

How is everyone doing?

Yesterday me and my youngest girl (6) spent some much needed one-on-one time, shopping! at her request. Pedometer on phone registered 5.5 miles and today I am dying because of it.
I used to be able to do stuff like that every day and be totally fine - as can most people. I'm finding my mobility going downhill, fast, and it's scaring me sad

kinkyfuckery Mon 22-Sep-14 13:31:45

And I just opened a parcel from the postie. It's the 'just incase' folding walking stick I ordered last week

fuzzpig Mon 22-Sep-14 14:19:10

Hey everyone.

I'm glad this thread is still around.

I'm sorry I have not been around chatting and supporting anyone for a long time. I kept trying, but the social anxiety gets in the way and I find it hard to come back when I've been away. I manage with other threads, but I guess it's the subject matter that makes this kind of thing exhausting. I am a mess psychologically and even my MNing, my one place of support, is affected now FFS. But I'm hoping to keep up with various support threads now. I need to. Sorry thanks

So today I have my first solely ME related absence for at least 7 months sad I've had a couple of days here and there with viruses but this is the first time I have had to say "I am having a relapse" for a long time and I'm SCARED.

This is the first time it's happened since DH started his job and I have not a fecking clue how this is going to work. School run is twice as long because DD is at a different school, she has packed lunches too, so that's another few spoons used up every day.

I had gone so long without a proper relapse that I'd started to feel like it'd all been a dream TBH. I actually felt like I was no longer disabled IYSWIM. Now I feel like a fool.

I can't even talk to people at work about it anymore, I always feel really embarrassed now even though I know I shouldn't. I tell a couple of my (same level) colleagues/friends when I'm feeling bad but even though they've been telling me to ask to go home for the last couple of weeks, I just can't do it. It's humiliating and I feel like they'll be all "oh FFS not this again". And I feel bad for complaining about what I'm going through when our manager has been away for months having cancer treatment.

I don't think I can do all this again sad

fuzzpig Mon 22-Sep-14 14:32:43

Oh FFS just wrote another post then lost it.

Kinky I hope you get on well with your stick if you need to use it. I've had one on my wishlist for a while but get a lot of pain in my hands during flare ups so not sure if it's the right thing for me.

I'm now reconsidering these:

IMAK Arthritis Gloves, Medium, 1 ea

As I hope they might help the pain. But it seems they've now increased in price <kicks self>

fuzzpig Mon 22-Sep-14 14:34:48

Oh and also I'd written well done for going shopping with DD. Shopping is surprisingly exhausting isn't it? It's deceptively strenuous and I don't tend to realise until after. Hope you feel better soon.

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