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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.

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