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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!

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.

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