New here. Chronic joint pain, but no inflammation - NRAS

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New here. Chronic joint pain, but no inflammation

Dbear profile image
14 Replies

I'm 24, male, diagnosed with hypothyroidism back in march 2016. As my thyroid levels are getting better with meds I've gotten really bad joint pain, symmetrical in knees, wrists, and elbows. I've had to stop exercising and have difficulty lifting and walking. Doctor did RA and inflammation tests and they all came back negative, last week the doc gave up and referred me to another rheumatologist. Does anyone have any ideas of what it could be?

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Dbear profile image
Dbear
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14 Replies
sylvi profile image
sylvi

It could still be ra darling you don't always have inflammation with ra.xxx

Barrister profile image
Barrister

It may be sero negative RA or some other type of inflammatory arthritis. My inflammatory levels are never raised, I was originally diagnosed with sero neg RA but as time has passed and I've developed other problems, my diagnosis has changed to PsA ( although I do not have psoriasis) and even though I don't have high inflammatory levels I still have joint erosion. Learn as much as you can and also see if there are any others in your family who have had these problems as that can point towards a diagnosis for you. Clemmie

mary53 profile image
mary53

Sounds like me....no markers in blood and limited joint swelling but pain. diagnosed with sero negative ra.

alfagirl profile image
alfagirl in reply tomary53

Me 2 and it is really hard to get people to believe me about pain when there is no swelling and no markers in my blood i am negative for Ra and nothing shows in my blood but scans show other wise, but been to see my new rhuemy and she is now questing my Ra as i have fibroymalagia as well and i think she is going with that but i have had ra for 6 years dont understand it as i know my own body ??

Dbear profile image
Dbear in reply toalfagirl

My rheumy wasn't very helpful, they just attributed all my joint pain to joint hypermobility, and gave me a prescription for Tylenol. I've been doing at-home physical therapy and maxing out Tylenol but no change good or bad. they didn't do any scans, just blood tests

Gigi71 profile image
Gigi71

Welcome Dbear. I have had Hashimotoes for 39 years and RA for 31 years with immune diseases, if you have one you are more prone to getting more. I have erosive sero negative RA controlled with meds now. When you see a rheumatolist they will run more in depth tests. Quite a lot of GP's just don't have the experience. Hoping you will find an answer soon. Take care.

oldtimer profile image
oldtimer

Commonest arthritis in young men is, I think spondylitis, often difficult to diagnose.

Simba1992 profile image
Simba1992

What about your CCP and RF? Were they raised?

Could be seronegative inflammatory arthritis. I was in pain for over a year before my inflammatory markers shot up. It's good you are being referred.

Interesting you have thyroid disease. I was hyperthyroid for a few years before the joint problems.

Simba1992 profile image
Simba1992

If you listen to the functional medicine doctors they would probably tell you that you may have a window of opportunity to reverse the pathological process before it turns into fullblown disease. This would be done by first changeing your diet, getting your gut and microbiome in good shape and if this does not help calm the inflammatory state, start looking for other possible inflammation triggering factors. It's worth trying:)

Simba1992 profile image
Simba1992 in reply toSimba1992

Then again the mainstream rheumies may tell you that yes indeed you do have a window of oppotunity before the disease breaks out. Research has shown that the effect of aggressive treatment is the best at this stage. If you are male, young, nonsmoker and not obease, your chances for the meds to work are quite good. Not an easy choice to make, then again you can do both:).

Dbear profile image
Dbear

It's hashimotos, my TSH was 99.4 by the time the doctors believed me enough to run all the tests. It's below 6 now so the endocrinologist says my joint pain should be gone by now. He ran an autoimmune panel that came back negative

Dbear profile image
Dbear

Thanks!

Fruitandnutcase profile image
Fruitandnutcase

Sounds like me, I have thyroid problems too, I'm in remission from Graves, that's hyper with antibodies. Anyway, I've been diagnosed with sero negative inflammatory arthritis.

I didn't have any obvious swelling of out of shape joints but I had a really good doctor who fast tracked me to our local hospital and they treated me in spite of not showing positive.

I was put on a three month course of steroids then because they worked - I was like SuperWoman- I started on DMARDS (Quinoric) I found the steroids got rid of all sorts of pains, I used to have constant horrible burning pain in my neck and shoulders and that went as soon as I started the steroids and hadn't ever come back.

On my last visit to the rheumy he said he is sure my extremely dry eyes are sjorgens syndrome even though I've tested negative for that and he said it was interesting as I was also sero negative.

Hopefully you will be treated by a team who will treat by their instinct and your symptoms rather than by test results.

I also went totally gluten free a year ago after the arthritis diagnosis, I've already got four other autoimmune conditions and felt I had to try something. I test my own bloods with a fingerprick test and over the year I my thyroid antibodies have reduced steadily since I did that so it might be worth looking at. I still eat out and live a normal life - it's just that gluten isn't a part of it any more.

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