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Diagnose me please! Joint problems

56 replies

QueenOfCats · 28/06/2015 16:49

Of course, I'm not really after a diagnosis here but would like to know if anyone has any suggestion as to what my symptoms may be and what I can say to/ask the Gp for.

I've got joint pains. My left wrist and both ankles are quite bad at the moment. If I weight bear on my left ankle in a certain way it feels like a hot knife is jabbing upward into the joint. The outer sides of both feet are also painful. My right big toe joint feels achey too and it gets puffy, as does the top of my right foot. My left wrist and left big thumb joint are painful and puffy.

I have a lot of lower back pain and shoulder pain, though the shoulders aren't too bad at the minute. I'm getting upper back pain in the morning recently.

I generally feel very stiff all over for a bout half an hour or so when I get up.

Any ideas as to what might be going on or what I can do/take to ease it?

Thanks

OP posts:
RawCoconutMacaroon · 30/06/2015 13:26

Ibs, dry eyes, joint pain, low b12...

Lots of autoimmune flags right there!

I suggest thyroid test (antibody tests if you can persuade your GP), and a Ceoliac blood test too.

MoreBeta · 30/06/2015 16:50

tinysleepy - yes I agree. I have had constant bladder pain and IBS for 20 years. Eventually became extremely ill for unexplained reasons. Could barely walk. Had to stop working. Then found I was severely intolerant to gluten and lactose. but not coeliac. Interesting RawCoconut mentions autoimmune problems as my non coeliac gluten intolerance is an autoimmune condition. Went on a gluten free diet that dramatically improved my health but the impact of long term health conditions is known to trigger fibromyalgia in some people.

Last night I cleaning my cooker and suddenly had shooting pains up arm. I couldn't hold a cloth. I was crouching down and struggled to stand up. Today as in most days I am exhausted.

BestIsWest - have not heard of parathyroid issues but will be going to see my GP for an in depth discussion and will check the calcium levels in my blood tests. I have early stage osteoporosis (osteopenia).

These are complex interacting factors and to be honest my doctors have given up. I just ask them to help me manage my symptoms now. Low dose antidepressants to reduce nerve pain response is a common prescription for fibromyalgia as there is no cure and its cause is only vaguely understood.

BestIsWest · 30/06/2015 16:56

More please ask for your parathyroid hormone to be tested at the same time as the calcium. It's my understanding that parathyroid issues are often misdiagnosed as fibromyalgia.

BestIsWest · 30/06/2015 16:58

Especially if you have osteopenia (I do too).

MoreBeta · 30/06/2015 17:15

BestIsWest - thank you for letting me know about this. Osteopenia is very unusual in a 50 year old man and I have lost 2 inches in height so I think they know I am not making this up!

I find it is best to turn up with specific questions. The fibro diagnosis is a diagnosis of exclusion because they 'discounted everything else'. On the other hand parathyroid is not something we discussed. I don't want to come across as a hypochondriac and I have to tread a fine line. I don't go to the doctor unless my symptoms are very severe.

I will check up on parathyroid before I go so I know what I am talking about.

RawCoconutMacaroon · 30/06/2015 18:08

Also morebeta, and others with Fibro pain, MS mimicking symptoms, dietary issues, I have struggled with many of the same issues... I Had a breakthrough last year which you may be interested in if you have a few £ to spare.

23andme genetic testing followed by analysis of the raw data through a couple of other genetic info sites showed up a number of genetic traits that are probably at the root of all my health issues - along with advice on diet and supplements to sort the issues where possible (diet is best of course, where you can manage it).

For me these issues included MTHFR (methylation) defects, and folate, b12 and vitamin D absorption and/or processing problems caused by particular genetic polymorphisms.
After several months on the recommended suplements/diet for my particular polymorphisms, I feel better than I have for many years... Thyroid symptoms and MS like symptoms and awful bone pain all gone! I suspect I was severely B12 deficient. Possibly vit D as well - I used to supplement but at too low a level for my genetically poor ability to process it. Im still trying to get my head round all the folate info (but basically folic acid, the synthetic form of folate, is potentially toxic to people with MTHFR mutations, and builds up in the blood.

These genetic differences are not particularly rare (about 45% of white Northern Europeans will have at least one, although about 10-20% will have a whole bunch of them and those are the people who will tend to have the biggest problems... Mostly I'd say the problems wouldn't exist if we were "wild" humans eating a natural diet full of green leaves, seafood and wild meats, because that would provide the required nutrients :)

Apologies for the essay but I am just a little bit evangelical about 23andme- I see it as handing huge amounts of empowering health information directly to the people who want it, for very little cash (for the kit, and the additional analysis on various other sites, some free and some not, it's about £150 all in).

It certainly beats repeat attendance at GP and hospital to be told there is nothing wrong with me yet again :)

festivehopeandfrolicks · 30/06/2015 18:28

Any history of psoriasis and joint pain should mean instant rheumatology referral.it doesn't have to be "bad"psoriasis.I only ever had one patch..

BestIsWest · 30/06/2015 18:39

MoreBeta hope you get somewhere with this. there's an American website called parathyroid.com. It's run by a Dr Norman. He may be a bit of a salesman but it is full of information.

hellomynameis · 01/07/2015 00:17

The joint symptoms you describe may well be inflammatory - there are a range of conditions 1 rheumatoid psoriatic arthritis seronegative arthritis .... Or it could be a symptom of another problem - that lost is virtually endless - but 'common things are common'.

I wouldn't go with a shopping list to your GP - let them see and assess you and take it from there.

While parathyroid problems can present with fatigue etc , it wouldn't be top of anyone's list and certainly you don't need referral to an endocrinologist.

blahblahblah2000 · 01/07/2015 00:41

Sounds like Lupus - get your ANA tested with your other blood tests.

Clarella · 01/07/2015 11:02

Not read whole thread, but at the bottom of list of everything else gets ruled out by gp could possibly be haemachromatosis. My aunt suffered for years till a bright spark looked at her ferritin again and joined the dots.

But if honestly go to gp and et a wack load of tests then work through possibilities with them. You could ask for rheum referral now as it takes a while.

Clarella · 01/07/2015 11:09

I've personally had an awful time with joints, pain, fibro symptoms but no swelling.

It was slightly off thyroid levels (I'm in thyroxine) but not the right level of ferritin to recover properly, then low vit d and a dx of hypermobility. Then I was over replaced thyroid wise for a bit and got very ill.

Finally all is balancing out slowly with good iron, right thyroid level, boosting vit d and physio etc for hms - however more and more I feel the hms isn't a huge issue, it was exacerbated by pregnancy and then all the thyroid/ iron issues not being picked up for ages, as both really affect muscle strength.

I was told to take vit d; I'm actually taking a bit more than the rda (spray from Holland and b) after throughly researching upper levels etc. I do think this has helped too.

I'm finding a super low dose of amitriptyline helpful occasionally to help with painsomnia. But I can feel myself recovering more each month. (Flares at period times)

Clarella · 01/07/2015 11:10

Went through endo who tested for Addisons (commented on ferritin) and rheumatologist who ruled out muscle enzyme issues etc. But dx hms.

MoreBeta · 01/07/2015 14:12

Clarella I am being offered low dose amitryptaline.

Did it help with your pain and insomnia? Any side effects?.

Clarella · 02/07/2015 08:03

I think it's used for its side effects which are to make you sleepy and numb pain!

I don't have much time to answer now but I'll post later - I'm extremely sensitive to most things including this, and have been taking a very low dose (4-5 mg) some nights in an as and when way. I found taking it every night made me too zombie like, but people say that gets better.

Clarella · 02/07/2015 20:29

I've been given it in liquid form so can take low amount. I might just be getting better anyway but it's been invaluable during a flare, and the pain seems to get worse the less sleep I have .

MoreBeta · 04/07/2015 10:54

Clarella thanks. I'm starting when I get back from hols. I get flares too so am hoping intermittent low dose might work for me too. The doctor said I had to find a level that works for me.

movelikeboov · 04/07/2015 12:10

In the first instance I'd be asking for these basic screening bloods to rule out inflammation, infection or auto-immune disorder:

full blood count, u&e, lft, crp, auto-immune profile, rheumatoid factor, calcium, vitamin d, thyroid function, vit B12, ferritin and folate.

these are usually first port of call where I work for people with these kind of symptoms.

Clarella · 04/07/2015 14:40

Yes, through gp and rheum I had all of these.

QueenOfCats · 10/07/2015 19:56

Hello again!

Had my bloods done and was told by the receptionist that the result was normal, no further action.

Got a phone call today asking me to book an appointment with the same Dr to discuss my results.

I have my test results in front of me - is anyone knowledgeable about test results?

OP posts:
Clarella · 11/07/2015 09:11

Those responses are confusing!

Perhaps the gp wants to reassure?

What are your test results?

Clarella · 11/07/2015 09:17

An update from me; a lot of my issues now are the effects of menstrual hormones on my joints (hypermobility) and ongoing SI joint/ spd issues. My physio pushed my pelvis back into place yesterday again and it's feeling better already, though I know it's the exercises which will have the most impact.

The issues with iron and thyroid meant muscles were extra weak and so pain was worse due to rubbish alignment/ over strained/ pulled useless/ rsi.

I've been slacking a bit on physio since my return to work starred but now feeling a bit stronger I'm going to really hammer the physio.

My physio ideally wants me off the Amitriptyline, and I must say I find it still foggyfies my brain at times.

QueenOfCats · 11/07/2015 11:58

Serum tsh 2.29
Serum free T4 12.2

RA IGM EIA 4

Serum alanine aminotransferase 38 (1-34) above high reference limit

Serum C-reactive protein 11 (0-8) above high reference limit 10-40 mild inflammation may be associated with severe viral infection

ESR 9 (0-12)

Anti CCP Antibody 1.8 (0.0-5.0)

OP posts:
fitnessforlife · 11/07/2015 12:03

Sounds very much like Fibromyalgia to me too.

unweavedrainbow · 11/07/2015 12:17

Why was your serum alanine aminotransferase tested? Broadly speaking, this tests for how well your liver is doing. A raised level can indicate liver disease, but as yours is only slightly raised it's probably nothing. Still, any jaundice or anything like that?

Your CRP is slightly raised, but not enough to be anything autoimmune specifically. Probably a cold. You also have a normal ESR. These two levels test for inflammation in the body.

Your thyroid levels are normal (free t4 possibly a little on the low side, but not massively so, normal is 10 and up)

Did they do a full blood count?

It sounds like fibro to me too.