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Autoimmune disease

Do these symptoms sound familiar?

102 replies

KittyB52 · 17/10/2017 21:40

I have posted in General Health and was directed to this forum for further advice.

I suffer with lower back pain which is worse in the morning and if I am too active first thing - pains in hips and upper thigh but not like sciatic pain. I also suffer from plantar fasciitis. I have recently (last couple of months) developed sore/weak hands - can barely make a fist first thing and left hand is swollen so I need to remove my wedding ring. I also wake several times as I get uncomfortable with various sore spots on joints.

Other symptoms include:

  • clicky ankles
  • Left shoulder pain (can't sleep on left side any more, although I often wake on that side)
  • Stiff back muscles
  • Stiff/painful neck muscles
  • Painful spot on hips
  • Light-headedness
  • Clumsiness - I often wobble off balance a little as I am walking about
  • IBS - mild constipation, not severe enough for me to require any medication
  • despite going to bed early, I never feel like I've had a decent night's sleep
  • History of infertility due to hormonal imbalance and immune issues
  • Occasional vision disturbance/blurry eyes (thought this might be visual migraine)
  • Occasional lapses in concentration, unable to focus on one thing, forgetful

I need to go back to GP (didn’t realise what a list that was until I wrote it all down) but have no clue what tests I should be asking for. I have had hormonal tests as I suspected I was perimenopausal (I am 44), but GP said levels were ,normal’. Vitamin D is low and I am going to increase supplement of that. I was tested for rheumatoid arthritis, and that was also ‘normal’. I saw an osteopath for my back and he said I ‘fit the profile’ for fibromyalgia.

Does these symptoms sound familiar? What should I be asking GP to do next?

Thanks in advance and sorry for the epic post. Blush
OP posts:
MissSmiley · 17/10/2017 21:43

I had a lot of those symptoms before I was diagnosed with coeliac disease. Unfortunately antibody blood tests negative only diagnosed via biopsies and genetic test.

MissSmiley · 17/10/2017 21:44

Is your iron normal? Iron stores or ferritin in particular.

KevinKnowsImMiserable · 17/10/2017 21:51

Have they tested your B12?

BestZebbie · 17/10/2017 21:51

Orthostatic intolerance as part of fibro? It goes with fibro and CFS and gives all the wobbly faint symptoms whilst the other gives the joint stiffness/pains.

Mustang27 · 17/10/2017 22:37

It’s screams fibromyalgia to me. Suffered with it for a very long time and honestly your lust matches mine to the letter Sad. Fibro is a shit diagnosis though as they do pretty much sweet FA for you.

Oh I’m also coeliac Hmm.

KittyB52 · 18/10/2017 07:54

Wow, lots of replies already - thank you!

I am looking at my patient records and I can't see anything about iron , which is odd, as I've had blood tests done for liver function etc. and it does say 'full blood count'. Nothing for B12 either, although I'm guessing that's a specific test you need to request.

I think those will be the first things on the list to ask my GP then.

Mustang I ruled out fibro myself as I didn't feel 'exhausted' (although typically, I was knackered yesterday evening - thought I was getting a cold so put it down to that). I usually wake up feeling tired and just get on with things - I have a 7 month old daughter. It's only when I wrote the list of symptoms out that I started to realise that this isn't normal.

Thanks again for your replies - lots to think of already.

OP posts:
KittyB52 · 18/10/2017 18:26

Quick update - I was able to get an appointment with my GP today (amazingly). I printed out the list in my OP and went through it with him. I've had more blood tests done, including hormonal, inflammatory, various vitamins and a full blood count. He's also redoing the RA test. According to the nurse who took the blood, the results will be back on Friday, which seems remarkably quick.

OP posts:
KittyB52 · 19/10/2017 17:32

Back again - test results are in (bloody quick, that - hah! Grin). Header says 'satisfactory' so I am going through each item just to check.

So far, the iron stores/ferritin has a note of it being on the low side ('normal range' is 10 - 291 and mine is 10.6).

Under hormones, the comment is 'peri-menopausal levels'.

Thyroid TSH level is 2.3, which is in the normal range.

There's a note in the renal section about possibly kidney disease, which is somewhat alarming. Shock The receptionist who called to tell me the results were ready said the tests were all 'normal' but my GP wants to see me, so I have an appointment on 3rd November.

I thought I was also getting my vitamin levels checked, but can't see any results for those on my record.

OP posts:
Mustang27 · 19/10/2017 17:38

I really can’t help you on any of the results let’s hope someone more in the know can. Possible kidney disease that sounds worrying but the appointment isn’t being classed as an emergency if they are seeing you on the 3rd so that’s reassuring, I think.

Floralnomad · 19/10/2017 17:39

My sister had pain in her hips / lower back and was literally crippled and she has polymyalgia . She had treatment for it about 18 months ago but IMO weaned herself off the steroids too quickly so it's come back . She restarted the prednisilone and was as fir s a fiddle in 36 hours . Might be worth having a read about it and seeing if other symptoms fit , it can affect upper arms badly as well .

KevinKnowsImMiserable · 19/10/2017 17:46

I would ask specifically to get your B12 levels checked, if you can.

I was very wobbly when my levels were low. Lack of B12 can cause all kinds of neurological damage which can be permanent if left untreated (in fact pernicious anaemia can kill you) so I would want to be ruling that out.

KittyB52 · 19/10/2017 19:03

Have just found the B12 level - its 258, so on the lower side of the 'normal' range given.

Floral I have looked up polymyalgia, and while the pain sounds similar, I don't have a loss of appetite or weight (quite the opposite!) and I don't think I am depressed.

Thank you again for your replies/advice so far.

OP posts:
Floralnomad · 19/10/2017 21:05

Nor was my sister , she has to be very careful with her weight , particularly now she is back on steroids . Often people don't fit all the symptoms . Most of the illnesses I'm being investigated for at the moment list depression and irritability as a symptom and I'm the least depressed person I know and not at all irritable .

KittyB52 · 19/10/2017 21:38

I will look into it a bit more then, Floral - thank you,

OP posts:
KittyB52 · 03/11/2017 11:44

Update - I had an appointment this morning to discuss my test results. It wasn’t with the GP who sent me for the tests, which was annoying.

Anyway, the only result she showed any concern about was the slightly raised count in the liver function test. So I am being sent for more tests.

I was told everything else was ‘normal’ and to exercise and take anti inflammatories for my back. I mentioned that I had already been taking ibuprofen for weeks with little effect and asked about X-rays or scans. She shut that down pretty quickly but did agree to send me for a scan (probably to shut me up).

No clue what else to do - can’t afford to go private so will have to carry on as I am and see what the scan brings ( if anything).

OP posts:
Stopyourhavering · 06/11/2017 09:12

Raised liver test , could be 'fatty liver'...they'll probably want to check your cholesterol levels and fasting glucose
IME GP's are slow to investigate for joint pains and reluctant to send for scans....these would normally be requested by a rheumatology consultant in any case
Again rheumatology referrals can take ages as well due to busy clinics
I'd been going backwards and forwards to GP for 15 months with aches/ pains sore joints, iritis..all blood results normal except slightly raised CRP ( an inflammatory marker)...
I'd been seen by ophthalmology in Feb for recurring iritis and joint pain but her referral letter to rheumatology didn't Menai my joint pain , so referral was bounced back Hmm
Then It all kicked off big time in June this year with a very innocent looking red and sore rash on my shin...this soon broke down into an ulcer....eventually got a dermatology appointment in August, biopsy in September and diagnosed with vasculitis in October ....been on high dose steroids since then and just about to start methotrexate
Good luck and keep pestering GP

KittyB52 · 07/11/2017 22:36

Ooh, that's a point, I'd better check the blood test paper to see if it's a fasting test - the last one wasn't. Thanks, Stopyourhavering.

The joint pain I can just about cope with, but the back pain is something else. When it gets bad, I can't walk - so lifting and carrying my, um, substantial baby gets tricky.

It sounds like I should be thankful the GP referred me for a scan (although I don't know how long it will take for the appointment to come through).

My CRP level is normal, but both AST and ALT are above normal range. The tests done same time last year showed all normal levels. Just reading up on those and apparently the levels can be raised by certain medications, including ibuprofren - which I have been taking because of my back pain. Hmm

OP posts:
KittyB52 · 24/11/2017 16:33

Another update - just had an abdominal scan of liver, gall bladder etc. and sonographer said it all looked normal (not sure if they are supposed to do that). So assuming she is correct, would I be tested further for fatty liver, or would that have shown on scan? I am assuming GP will do liver function test again in a few months...

OP posts:
user1499786242 · 24/11/2017 17:35

When did your back pain start?
I started to get lower back pain which has now moved to my hips and well I basically feel like utter crap
It all started two years ago
Have been fobbed off for all this time
Moved to a different part of the country and was sent to a Physio straight away...
She's told me my pelvis is out of line from pregnancy and long term breastfeeding
Which is causing the pain, which is then causing the exhaustion from being in pain etc

Could it be something like that?
You can self refer yourself in most areas I think!
Back pain is horrendous :( and even worse when you have a baby/child to look after!

KittyB52 · 24/11/2017 18:50

To be honest, I can’t remember, it’s been going on so long. It’s at least several years on and off. It’s been more noticeable this year due to baby (born through surrogacy, so it can’t be pregnancy related).

The osteopath I saw a couple of months ago said I had one leg slightly shorter than the other (like a lot of people) and that all my muscles were ‘fatigued’ from overwork - presumably due to poor posture trying to counteract the back pain.

I will see what comes out of the MRI scan and then take it from there, I think.

OP posts:
MissWilmottsGhost · 24/11/2017 19:05

I have similar symptoms and also some autoantibodies. One consultant said my condition is autoimmune, but my current rheumatologist is saying fibromyalgia. I was really surprised when it was suggested as I wouldn't say my pain is bad enough for fibro, but tbh the rest of my symptoms fit.

Breakfastat · 24/11/2017 19:34

Hi Kitty, I have had chronic lower back, hip and knee pain since I was a teen (im an ex gymnast so think this causes a lot of my pain) and I finally went to a physio last year (in my late 20’s) She said similar to you in that my muscles were fatigued and gave me lots of exercises to isolate and strengthen my glutes stomach and it helped incredibly. It still gets painful but I’m able to manage it so much better now! Saying that I also have a lot of similar symptoms that you do as well - literally! Especially waking up the back pain is worse, IBS, clicky ankles and clumsiness! I have a stiff neck and shoulders too but it’s because the muscles are full of knots, have you considered going for a massage? Swedish or sports? I know these suggestions won’t help you to get to the bottom of this but may help the pain a little!


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Labradoodliedoodoo · 24/11/2017 19:38

B12 deficiency. Don’t take b12 vitamins but get a blood test done before doing anything. You may need injections

Labradoodliedoodoo · 24/11/2017 19:42

You have b12 deficiency symptoms. You won’t get treated on the nhs because their acceptable range is very very low unlike other countries. Join some B12 Facebook groups and educate yourself. It’s unlikely B12 vitamins will be enough and you also might need folic to help raise your levels

aliceinwanderland · 24/11/2017 19:44

Sounds like some kind of inflammatory disease/arthritis. You need to press for a consultant referral. No blood test is conclusive for rheumatoid arthritis and you need to see a clinical specialist.

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