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Don't know what's wrong with me, neither does the doctor

(86 Posts)
roughtyping Sat 21-Sep-13 08:10:27

Hi everyone. Just wondering if anyone who's experienced similar symptoms could lend an ear!

I've got terrible joints, I get a lot of pain in them (I cry at some point every day just now blush). The pain comes and goes - most of the time it's 'background' pain but quite often becomes much more insistent. Like my body is shouting at me.

My back and knees have always been worst, but recently my hands have been terrible (hard to text on phone, manipulate small items eg blu tac, can't currently do things like make scones as cant coordinate hands to rub in butter etc). It's almost like my fingertips are numb - I still have feeling but it's like they're sort of flat. Hard to describe. Also getting a lot of tingling/pins and needles/episodes of numbness in hands and feet recently.

Also have began having problems getting dressed - not every day though, and with 'annoying' items like tights and hoodies.

Have had 2 episodes this year, both lasting a day, where I could hardly walk and just couldn't seem to coordinate movements properly. DH was having to help me get to bathroom etc.

I'm constantly exhausted. I wake up and I'm ready to go back to sleep. At any point during the day, I could lie down and go straight to sleep.

I'm very down/anxious/grumpy, particularly with DH
sad which is crap, as we've only been married a month. He does so much to help me and make things a bit easier.

I've previously been to physio who suggested i have hyper mobility syndrome, however was unable to do much but gave me exercises to do and things like a wrist splint and scissors which are easier to use (a brilliant help as I'm a teacher and do a lot of cutting out). However I was discharged as there wasn't much else they could do.

Been back to GP recently. First time he took bloods, 2nd time gave results of variety of blood tests which were all fine/normal, and did a sort of 'coordination' examination, I assume to rule out neurological things, which was fine as well. He took more blood and I've to go back this week.

He suggested arthritis. I've been tested for rheum before (can't remember what it's called) and it came back negative.

I just don't know what to do. I've always been told t just take ibuprofen ever day, but a friend who's a nurse recently was shocked that I've been told to do this for years and not been given any medicine to protect my body against negative effects. I'm just sck of feeling g like this, I don't want to do anything anymore, I just want to sleep sad

I'm sorry for the massive essay!

Panadbois Sat 21-Sep-13 08:17:19

Firstly I'd go see another GP. I went to mine two years ago with joint pain that was occurring once every three months or so, but he still took me seriously. I was sent for tests and was referred to the specialist after being diagnosed with palindromic rheumatism (cone and goes). I have been given tablets to take when it does hurt even when its a rare thing for me.

Seriously, ask for another opinion.

Panadbois Sat 21-Sep-13 08:18:30

I forgot I put firstly!! Ok, secondly, have you an intolerance to dairy?

Rooners Sat 21-Sep-13 08:19:18

Fibromyalgia?

roughtyping Sat 21-Sep-13 08:20:22

Hi Pan, thanks for replying so quickly.

This is actually the best GP I've seen. The rest have brushed me off completely (apart from one who referred me to Rheum when I requested it - rheum passed me to physio). He says if nothing shows on this set of blood tests he'll refer me 'elsewhere', didn't say where though.

I haven't heard of palindromic rheumatism, will go and have a look just now.

Panadbois Sat 21-Sep-13 08:21:32

http://www.livestrong.com/article/437115-dairy-products-that-cause-joint-inflammation-pain/#page=1

I'm in my ipod so can't link sorry

roughtyping Sat 21-Sep-13 08:22:04

Don't eat a huge amount of dairy - milk in cereal and that's it really. Will keep an eye on it though.

Will go and look of fibromyalgia just now, I'm sure I looked before, will check again.

Thanks so much for replies

MissMalonex2 Sat 21-Sep-13 08:22:22

Ehlers Danlos Syndrome? - friend has this and has similar patterns of symptoms (fits with physio saying you are hyper mobile)

impatienttobemummy Sat 21-Sep-13 08:23:40

Lupus? Get another GP opinion

I would request a referral to neurology with your symptoms, lots of things that need to be ruled out.

TripleRock Sat 21-Sep-13 08:25:15

I was going to say fibromyalgia as well.

oranges Sat 21-Sep-13 08:28:04

you need to see a rheumatologist who specialises in auto immune responses. GPs are often bad at spotting symptoms of things like lupus, sarcoid, RA, as it covers so many symptoms.

roughtyping Sat 21-Sep-13 08:28:48

Read that link Pan, will avoid dairy for a bit and see if it helps!

Missmalone, I think hyper mobility syndrome might actually be a type of Ehlers Danlos? I know there are a few different types. (I could be completely wrong!) it's bothering me because they've said it's probably this then left me to get on with it, when it's getting worse.

Impatient are you dr house?! ;) will look up lupus, not something that occurred to me.

I always feel so stupid if I suggest something to the doctor. I hate coming across as know it all or bossy, but sometimes I think, well I've found more just by googling (and asking mumsnet!!), grr.

I also get mild Raynauds (not sure of spelling) in winter, which makes using my hands trickier when it's cold too.

roughtyping Sat 21-Sep-13 08:30:52

Thank you so much for all your replies. Will google all of these.

Will see what GP says on wed, will ask for a referral if its not forthcoming.

I love mumsnet!

Parmarella Sat 21-Sep-13 08:34:27

Ok, this really sounds like something that should be looked into by specialists. A neurologist could, for example test quite easily if there is any nerve damage. If there isn't he could refer you to another specialist .

GP's get into trouble with nhs if they refer too many people to specialists. So knowing that, get a second opinion or go back to your old GP and kick up a bit if a fuss.

What you have should be investigated properly. Firstly they should find out if the problem is in the bones, the nerves or both

roughtyping Sat 21-Sep-13 08:35:10

Lupus all sounds quite familiar. Have terrible memory as well, some recent bouts of headaches, and a few months ago thought I was developing rosacea

roughtyping Sat 21-Sep-13 08:38:39

It's also causing me a bit of stress for a stupid (well, avoidable) reason. DS will be 10 this year, DH and I would love to try for another baby (DS not biologically his, I had him when I was 17), but I don't know how I could work FT while pregnant with how tired I am now. Obviously not the most pressing concern but one that's weighing on my mind a lot and spurring me to get this 'sorted' IYSWIM.

Panadbois Sat 21-Sep-13 08:41:40

Are you on any medication? My DM was given statins and they ruined her life for 5 years, only just able to walk without pain after an injection two months ago.

roughtyping Sat 21-Sep-13 08:42:07

Fibromyalgia sounds v familiar too! ESP 'extreme sensitivity to touch' - currently can't stand DH stroking the inside of my wrist as it 'hurts'.

How do doctors differentiate between such similar conditions?

MoreThanWords Sat 21-Sep-13 08:43:22

How old are you, OP?

roughtyping Sat 21-Sep-13 08:45:01

MoreThanWords, I'm 27

NanTheWiser Sat 21-Sep-13 11:04:11

Have you had Vit B12 checked? If not, get it done.

roughtyping Sat 21-Sep-13 17:31:04

Hi Nan,

Yes B12 was something that was checked the other week. All fine.

Reading more about fibromyalgia and it seems to fit a lot. Just need to see what GP says I guess, and what is suggested to manage everything. Feeling very down tonight; felt mch more positive this morning. I know my mum doesn't 'believe' there's anything wrong with me and thinks I'm jjust lazy.

Reading about fibromyalgia - I've noticed myself mixing up my words loads the last few months, assume it's down to tiredness. Also - terrible memory, get confused over simple things. Much more forgetful.

Trying not to crry as DH will ask what's wrong. I on't want to keep moaning at him. I'm hurting loads, can't sit in the one position for too long. Just want to go to sleep just now.

roughtyping Sat 21-Sep-13 17:32:00

Think I'm feeling a bit worried/scared TBH. Even though a diagnosis of anything won't change how I'm feeling, it's just I'm realising how much I've gone downhill in the last year.

TripleRock Tue 24-Sep-13 00:27:01

Good luck with the GP OP. In your shoes I would be pushing for a referral to a specialist regardless. Thinking of you.

Josie314 Tue 24-Sep-13 00:51:15

I second checking any prescriptions you are on. I was amazed that my GP didn't do that when I had a problem. Turned out I just needed a different pill!

mercibucket Tue 24-Sep-13 09:24:37

can you tell us your
b12 level
tsh
t4
ferritin
and vit d levels

you might need to ask for a printout from the receptionist

I'd ask for a rheumatology appointment too.

there are many autoimmune diseases with joint pain and tiredness as symptoms not just rheumatoid arthritis.

I'm currently in the same boat no diagnosis awaiting an appointment with rheumatology.

it sucks, I feel your pain.

hiddenhome Tue 24-Sep-13 18:15:08

Could you be depressed? The memory problems, tiredness and mixing up words can be due to depression. Pain is also worse when you're depressed.

roughtyping Tue 24-Sep-13 19:20:29

Thanks for the replies

Josie, the only prescription I have is contraception pill - could it have that much of an effect? It took ages to find one that didn't leave me bleeding nearly constantly

Merci, I will ask for a printout when I go on thurs. would like to see them for myself anyway

Hashtag, so sorry you're feeling similar. It's rubbish isn't it - just want to know what's wrong and how to manage it

Hidden, possibly. I get v anxious, lots of up and down mood swings - very high and very low. Find it hard to keep my mood 'level' at home as I have to work hard to be 'fine' and not in pain at work. Poor DH has to put up with so much crap from me. But then depression/anxiety is often comorbid with these conditions isn't it? Is that why they recommend CBT as a treatment?

Tabby1963 Tue 24-Sep-13 19:26:35

I can't offer advice, OP, but you've had some great advice from other posters, I do hope you get it sorted, it sounds like you're having a hard time at the moment.

yetanotherworry Tue 24-Sep-13 19:29:23

Have they checked your vitamin D levels? I had similar pains and all arthritis/rheumatism tests came back normal. However blood tests showed I was vitamin D-deficient so I now take vitamin D tablets daily and they've made a huge difference. I still get some pain some days but its low level pain and I rarely feel the need to use ibuprofen/naproxyn.

hiddenhome Tue 24-Sep-13 19:41:44

CBT can help. A course of SSRI antidepressants might be an idea as well. You don't have to be on them long term, but are worth trying as they can make a world of difference.

If the prescribe you one and it makes you feel tired, take it at night instead of in the mornings - this makes any side effects far easier to cope with. Some SSRIs are prescribed for anxiety as well. I'm on Citalopram which has helped enormously with the anxiety as well as the depression. My memory and cognitive functioning improved as did the tiredness. Pain is much harder to deal with when you're depressed.

It might be worth a try.

AlphaBetaOoda Wed 25-Sep-13 07:30:40

I am similar.
I saw rheumatology yesterday. I have hypermobility syndrome , she is also looking at nerves to check for damage.
I find my speech /concentration improves after pain killers. I think sometimes my body is too busy managing pain to do other things

roughtyping Fri 27-Sep-13 13:52:38

Have been referred to neurology. Feeling v crappy about it all! Heyho. Thanks for all the replies/support.

misscph1973 Fri 27-Sep-13 14:00:33

I recommend you look into the adverse effects of grains and sugar. I eat Paleo, so I just don't touch the stuff. A very strict no grains and sugar diet could very well make your symptoms go away - although it will take months before you see any improvement. I highly recommend you look into curing yourself with diet.

With symptoms like that, your GP is no good - hence the title "GENERAL practitioner" - they can't know everything, and they are best for illnesses that can be cured with antibiotics.

Shosha1 Fri 27-Sep-13 14:06:32

Rough typing. I have Lupus.
You sound like me when it all started.

It took 18 months to diagnose me.
( and it wasn't Dr House ;) )

Please ask your Dr to do the blood test

AlphaBetaOoda Fri 27-Sep-13 15:22:14

rough look on it as progress to finding out?

thing1andthing2 Fri 27-Sep-13 21:01:32

I expect the neurologist will want to rule out MS.
It does sound quite rheumatoid and possibly auto-immune - RA, lupus, fibromyalgia etc all worth exploring.
Glad your GP is referring you to relevant places. A rheumatologist would be able to diagnose lupus or fibromyalgia.

BigW Fri 27-Sep-13 21:10:51

Just to second what yet said. I had a friend who had these symptoms for years. He would literally cry and scream with pain. He has bi-polar and for years the doctors told him it was psychosomatic. It wasn't. Eventually he was diagnosed with a form of rickets. He body is unable to process sunlight to make vitamin D. He had a series of injections (still does I think) and it cleared up in two weeks. After years of agony.

I hope it's that easily treated for you OP

roughtyping Thu 03-Oct-13 06:22:56

Have had a good few days but woke up yesterday and today and feel like a train has hit me. I'm waking up tired, it's making work a million times harder. Lay in bed crying at the thought of getting up as back so sore. I just can't be arsed with this, I'm absolutely shattered. Could sleep for weeks. sad

DontCallMeDaughter Thu 03-Oct-13 06:30:41

A friend if mine has symptoms like you describe, she's been diagnosed with sarcoidosis, but is now also being tested for Lyme's disease... Her diagnosis for sarcoidosis took over a year and a lot of tests, so keep pushing...

3littlefrogs Thu 03-Oct-13 06:34:35

You need to consider:
Sjogrens
Lupus
RA
APS (anti phospholipid syndrome)
sarcoid
fibromyalgia

All of the above mimic other conditions, and can produce negative blood results sometimes.

TBH I would seriously consider coming off the pill.

Referral to a rheumatologist would be a good thing, if the neurologist doesn't come up with a diagnosis.

Weegiemum Thu 03-Oct-13 06:34:36

You really need to see someone else and be referred to a neurology centre who will do tests your GP can't do or doesn't have much experience of.

I know this because I've got a neurological disorder and my husband is a GP - he was really stumped by my symptoms, but we got referred, diagnosed and on a treatment plan.

There are loads of obscure neurological conditions that can cause all the problems you are having. I'm frankly appalled ay your GP not referring you on. My condition is diagnosed about on average 50 times a year in the uk, your GP should have been prepared to say he just didn't know and send you to someone who did. My dh has been a GP for coming up 20 years and he'd never heard of my condition - for obvious rarity reasons.

From a neurology pov, there are great places in Glasgow (Southern General - where I go) but also Newcastle, Nottingham, Southampton and I think Kings (?) in London.

I hope you find out what's wrong. Feel free to pm if you want. I totally get the flat fingers and lack of coordination because my fingers feel like that and I can't clap my hands with my eyes shut! If it is something like my problem there are lots of good treatments which make a huge difference!

sebsmummy1 Thu 03-Oct-13 06:36:57

I was going to suggest MS as my OH has it and some I'd the symptoms sound familiar. An MRI would definitely rule that out although if they offer a lumbar puncture I would refuse. Pleased you got your referral and praying that you get a resolution to your problems xxxxx

roughtyping Thu 03-Oct-13 06:41:50

Weegie, I've been referred to neurology. Also in Glasgow, not sure where referal would be sent to?? Not even sure where neurology is based.

Sebsmummy, why would you refuse a lumbar puncture? It's not something I know much about (apart from it's sore!).

Going to speak to HT at work today. I feel like I'm at the bottom of a well. Mixing up words in class etc as so tired. Don't feel organised, feeling v pressured.

roughtyping Thu 03-Oct-13 06:50:38

Oh, 3littlefrogs, have just finished a pill packet and have decided not to continue - want to TTC possibly in a year or so and want to have time to adjust. Been on the pill for 10 years.

BikeRunSki Thu 03-Oct-13 06:55:18

Dystonia? Friend has recently been diagnosed with similar symptoms.

MS - surely GP has eliminated that?

roughtyping Thu 03-Oct-13 06:57:30

I don't think GPcan diagnose MS.

sebsmummy1 Thu 03-Oct-13 14:00:03

No GP cannot diagnose MS, they need to do an MRI when they look for scarring on the brain. A lumbar puncture is offered as a final test to confirm MS but my OH turned it down as the spinal cord is extremely complex and you don't want to be messing around with it unless you absolutely have to. He felt the diagnosis was an accurate one based on MRI and his symptoms.

lateSeptember1964 Thu 03-Oct-13 14:18:47

My son has just been diagnosed with Crohns. Although its an inflammatory condition of the bowel his symptoms were that of arthritis. He is also hypermobile. He also underwent numerous tests all of which I was told by the GP were normal. When I saw a consultant at the hospital he said the inflammatory markers were all up and admitted him straight away. Have a think about any other symptoms you may have including the rash, any sores, mouth ulcers, lethargy

roughtyping Wed 09-Oct-13 08:20:29

I am feeling so, so down. I really don't want to face work. Have woken up crying about it. Am on a course today (and for last two days) which has been fine, just tiring - I went to bed at 7 on Monday and slept for 12 hours and was still tired. I am so stressed as nothing can be organised in y head, there are a million thoughts there and I can't pin them down.

Oh, and I had a horrible visual thing at a shopping centre, y aunt said it sounded like migraine?? Blind spots, kailedescopic triangles across the middle of my vision, everything jolting around me. It was horrible. Don't know of the big strip lights could trigger that?

I honestly feel a bit desperate. I'm worried for my health and I'm worried about how stressed I am. I just want to sleep.

roughtyping Wed 09-Oct-13 08:20:52

And sorry, I know I just come on here for a moan!

ohmeohmyforgotlogin Wed 09-Oct-13 08:23:59

Visuals sound a bit like visual migraines or scintillating scotoma. Sorry you are feeling so unwell. Hope you get a diagnosis soon.

chocolatelime Thu 10-Oct-13 12:57:50

Quite a few of your symptoms do tie in with MS, even the visual disturbances. Fatigue, numbness, pins & needles, weakness. I hope that you get your Neurology appointment soon and get some answers. My DH has MS and he had the MRI scan and lumbar puncture to confirm the diagnosis. He was a bit sore after the lumbar puncture but that passed after a few days. If they find oligoclonal bands in the spinal fluid then that is a sure sign of an MS diagnosis.

Please try not to worry (easier said than done, I know!). If it is MS there are many treatments available and new drugs coming out all the time. The most common form of MS is relapse/remitting and you can have long periods of remission (even years) between relapses.

LeoandBoosmum Thu 10-Oct-13 13:08:33

Are you on any meds now at all?

VoiceofRaisin Thu 10-Oct-13 13:12:29

Take care. Neurology sounds like a good call. I hope you find out the cause. Is someone taking care of you, and will you be able to get to your appointment ok?

roughtyping Thu 10-Oct-13 18:28:54

Thanks for all the kindness. I'm alright just trying to keep my mind off it all! No meds no - just OTC pain killers for joint pain. Ouch. I keep getting a metallic taste in my mouth, like when a bruise is pressed IYSWIM. Coming home hoping the neurology letter will be here, no sign yet.

But yes, thank you so much for being kind and patient. Yes DH looks after me, he is amazing. Has completely picked up the slack in the house when I'm so tired.

roughtyping Sat 02-Nov-13 12:44:20

Sorry for bumping this again. Feeling really bad. Was off for October week and able to sleep when I needed to and eat well. Back at work now and really struggling. Feel like I've hit a brick wall. Have been in a lot of pain - all of my joints in my right side were horrendously sore for one day - kept going over my right ankle, shoulder was leaning down etc. then next day was sore all over - the 'bruise' pain again - ad metallic taste. Could feel the pain in my teeth. Been very forgetful. Hands very hard to move and tingling again. Feel very low.

Still waiting to hear fro neurology. Keep meaning to phone but appointment line is open 9-5 and I've been going to work for 8 and leaving at 6 as there's too much to do.

In the process of requesting flexible working hours so I can work four days instead of five.

Feel totally shattered and just done. Feel so guilty an lazy and most of all tired

mineofuselessinformation Sat 02-Nov-13 22:50:03

Go back to your gp. If you need to change your work patterns because of this you need some more investigation. Has anyone tested your immune system?

LoveSewingBee Sat 02-Nov-13 23:21:34

Many of your symptoms fit with MS.

However, MS is very difficult to diagnose, eg some people are told they have MS and years later they are told that no they don't and also the other way round.

If you do get an MS diagnosis then there will be medication. In Italy there is a lot of MS research (because there are a number of MS clusters there) and one of the things pursued is that it may be caused by too much iron (I believe, but could be other metal) in the brain causing blockages. One person seems to have been cured(wife of this professor).

There is also a research centre in Belgium, which stresses that people with MS can have a full life, including children as it is not a life limiting disease.

I hope you get some clarity and some help soon.

Ziggyzoom Sun 03-Nov-13 11:12:21

I'm watching this with interest. I have suffered with joint pain and stiffness in various joints since having my 2nd DD nearly 6 years ago. I had various blood tests and the rheumatologist decided I was mildly hyper mobile and this was the issue. More recently X-rays have confirmed arthritis in my elbow and hip, but the consultant examining my hip didn't think my hyper mobility was significant. I also experience the aura associated with migraine but no other migraine symptoms and I was diagnosed with Discoid (limited to skin) Lupus 15 years ago. I have Reynauds too and a general feeling of crapness which I am fighting daily.

I am convinced there must be an overall diagnosis for what I am experiencing but no one (but me) seems to be interested!

I hope you get some answers soon and I will watch this thread with interest.

lljkk Sun 03-Nov-13 11:19:52

to OP: can you get a private initial appointment? I know it's expensive but it lets you jump faster into the system. You've waited long enough and it's messing up your ability to work now.

lola0106 Sun 03-Nov-13 11:44:56

I would recommend looking into Ankylosing Spondylitis. It's an inflammatory condition that effects most joints, can cause problems with vision and Chron's is a symptom. It's very difficult to diagnose, especially if you are under 30. The doctors think I have it but can't really diagnose it yet as I'm only 23. They can give me medication though which helps with pain and mobility. Good luck.

roughtyping Sun 03-Nov-13 13:39:01

ZiggY I will PM you at some point. I feel exactly the same - no one really is bothered about making this get better and I feel so tired that chasing things up is a long way behind sleeping just now.

Lijkk - I started to look into it a little bit but couldn't really figure out how to go about it. How would I arrange something like that if i decided to go down that route?

Lola - so sorry to hear that. Why can't they diagnose before 30?

roughtyping Sun 03-Nov-13 13:41:03

Mine - I've had lots of blood tests but I'm not sure what for. Is it your white blood cell count they look at to check immune system? All bloods came back normal.

Sewin, that's really interesting. I don't think it's surprising that people get a diagnosis and are told later it was wrong, and vice versa - everything like this (sort of pain/tiredness related) seems to be so vague.

lola0106 Sun 03-Nov-13 13:50:22

Ive been told it's because it's quite rare and they need to monitor the effects over a longer period of time to make sure that's what it is. There is no test that can say yes that's what it is unfortunately.

Blimey OP you're having it rough, so sorry to read this. I hope you get a diagnosis and soon!

Is someone doing chores for you? Are you sleeping when not at work?

A couple of my friends have fibro and ME combined and sound like you but they have some ok days.

Sending positive vibes your way and hope you get some answers asap x

roughtyping Sun 03-Nov-13 15:01:36

Lola - that makes sense!

Scary - yes I do have ok days, I just don't moan on those days grin and only really post about it when it's bad IYSWIM. It's quite hard having those good periods I think because then doubt creeps in and I think, am I over reacting, is it really that bad? Etc

Glad you have good days and hope that you get some help soon.

RandomMess Sun 03-Nov-13 17:12:12

Haven't read the whole thread as it's so long - what about psoriatic athritis? There is no test for it I'm afraid - but it comes and goes and can be very debilitating. You would have to have a realtive that has psorasis because you can gave it without having symptoms IYSWIM???

LoveSewingBee Sun 03-Nov-13 22:12:05

You may not have MS at all, but just in case you do get such a diagnosis, then this article may be of interest. If you google MS and iron blockage you will get many more articles as it tends to get a lot of attention in the medical press at the moment.

Sorry things are so tough for you, I have a lot of sympathy. I hae lots of similar symptoms (joint pain, exhaustion), and am currently having a bad flare up. My GP is finally referring me to rheumatology, and doing another set of blood tests. I've also got him to include VItamin D this time, which you should also ask for.

There is plenty of private healthcare in Glasgow: Nuffield, BUPA and BMI all have hospitals if you want a private first appointment (just type private health Glasgow into google, or ask your DH to do it). Chances are you will see the same doctor as you would via the NHS.

I would strongly recommend that you get better pain meds. I have dihydrocodeine, which is an extra strong form of codeine but doesn't leave you feeling totally stoned. It is an opiate and therefore potentially addictive, but if your pain is interfering with your daily life so much, you may benefit from it.

Keep on at your GP or switch, sometimes they need pushing.

peggyundercrackers Mon 04-Nov-13 10:07:51

if you are considering going private there is BMI hospital at Ross Hall and Nuffield in glasgow. You could call and ask if there is a neurologist you can get an appointment with - if there is someone you can see they normally see you within a week.

good luck - sounds like your having a real shitty time just now.

PrimalLass Mon 04-Nov-13 10:18:55

I was going to suggest paleo too. It is worth a shot. Read the success stories and forums on Marks Daily Apple.

Forgot to add that I'm also primal/paleo. Definitely have a look at Mark's Daily Apple. Cutting out grains and sugar has made a huge different to my health.

lljkk Mon 04-Nov-13 13:21:04

Private appointments: ask your GP which hospital you've been referred to & what kind of specialist. Then phone the main hospital switchboard & ask which senior consultants they have in that specialism. The switchboard will probably have phone numbers of each consultant's PA or secretary (yes they have them). Else you can google for the same person to find their private practice pages. Ring & ask how soon & at what cost you could get a private appointment (likely within a week, £60-£80 is a typical charge for just the consultation).

If your needs are severe enough you will leapfrog straight back into NHS treatment,only the initial appointment need to pay for.

It's all against the ethos of the NHS ideals, obviously. I know people who find the whole possible procedure quite offensive. I'm not sure those moral issues are your problem, though.

peggyundercrackers Mon 04-Nov-13 20:48:32

lljk that sounds cheap - I had a private consultation with a gastro doc and it cost me £250. I think I was in for 20 mins and didn't have any tests.

lljkk Tue 05-Nov-13 18:17:47

eek. I wonder if price depends on specialism, too.

roughtyping Sun 10-Nov-13 17:47:37

Have had quite a few 'up' days this week. Was driving yesterday and it occurred to me that I wasn't tired and wasn't in pain - a lovely moment.

Phoned the hospital on Friday, they'd made an appointment that day. It falls during the Christmas holidays, which suits for my work... Think I will phone again on Monday and ask to be put on waiting list for any cancellations. Even if not, it's next month.

good luck with your appointment.

roughtyping Sat 26-Apr-14 08:39:58

Hi all, sorry to raise an old post! Just going back into a painful period after a few weeks of goodness.

Had neurophysiology appointment who referred me for neuro tests (EEG I think it's called) which all came back normal, I've to go back at the end of the year but think that's that. Have just started seeing a rheumatology physiotherapist with an interest in hypermobility, she is so lovely and understands it very well which is amazing.

I've managed to lose 25 pounds since the start of the year which is great and seems to have helped loads. I'm part time at work, now four days, which has made a massive improvement to my general health and I feel more able generally to cope with life.

I'm having my first big 'slump' of the last few months. I am so exhausted and sore, particularly the back of my feet, my back and knees. It is rotten. I always forget how bad it is.

I also had an episode in I think February, where both knees seized up. I cried a lot! It lasted for a few days and I got very down, and panicky, as I thought 'this is it' and my legs were screwed. I couldn't walk, I could barely move my legs without horrible pain. But it left on it's own.

Since then I've had a couple of episodes of 'hot knees', where my knee is painful and very hot to the touch, which hasn't happened before. Does that suggest arthritis?

Having a tough time with family just now, my granny is in a hospice etc, and I think it's maybe stress that's caused the latest flare in symptoms.

Anyway, no closer to a diagnosis of anything, I just like that I have this thread as somewhere to remind myself of how I've felt in the last few months.

Hope you're all well smile

roughtyping Sat 26-Apr-14 08:50:04

Sorry just thought of a couple more things!

I have been generally 'clean eating' - not always sticking to it but trying to on the whole. I don't know if it is helping any of my symptoms but it is helping me view my body in a much more positive way IYSWIM.

I also had a full blown migraine at work. It was during my time out of class, so no kids. It started with blind spots, no balance, fuzzy vision, then I was writing out the kids' spelling words and didn't think id done them correctly - asked another teacher to check and apparently I'd written total nonsense, just random letters. Then I couldn't remember who people were or people's names, then the nausea and headache kicked in. So I was sent home. It passed about 8 hours later I think. Went to GP so that it was recorded, BP etc was fine, they said it just means I'm not able to go back onto combined contraceptive pill.

I've also been having episodes of dizziness ad my BP in the morning is low, around 40BPM, although it's always fine during the day when taken at the GP.

duende Sat 26-Apr-14 09:02:39

Not sure if this has been mentioned but have you had your thyroid checked? I have hashimoto's - autoimmune thyroid disease. When my thyroxine needs increasing I get mad mental fog, trouble concentrating, tiredness, low mood and pains in all my joints. Fingers, wrists, elbows, knees, ankles...

It gets better when thyroid is under control.

Hope you find the answer and feel well again!

RubySparks Sat 26-Apr-14 09:10:20

Agree with duende worth checking thyroid. I have had very similar experience and symptoms. I was first diagnosed with coeliac disease so avoid gluten and then hypothyroidism - also Hashimoto's which means it is autoimmune. I am on levothyroxine and getting the right dose is crucial.

I think chronic long term stress was at the root of my problems but I am also menopausal as older than you and take HRT too.

Hopefully you will get some answers soon and find a way to feel better. I have also had fibromyalgia and cfs suggested to me but with the other issues I feel there must be more of a reason. It is hard to cope with the ups and downs but pacing has helped me, mainly meaning don't overdo things when you feel well, tempting though it is.

I was also very low on vit D, all of these things are inter related rather than individual things I think.

Best1sWest Sat 26-Apr-14 21:18:18

Have you had your calcium levels and pth checked. I've had very similar symptoms, pain in joints and muscles, especially legs and lower back, exhaustion, poor memory, headaches but also indigestion, all caused by a benign adenoma on the parathyroid gland (not thyroid). I'm waiting (and waiting) for a small op which I'm told should cure it.

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