Does this sound like RA?: Hi - new to this forum. Epic... - NRAS


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Does this sound like RA?

Rose_7 profile image
5 Replies

Hi - new to this forum. Epic post below, but my basic question is whether a collection of health problems I’ve had sounds recognisable as RA or another autoimmune condition. And if my most recent and severe bout of illness is an RA flare, what do I do to cope with it and help it to pass?

I was diagnosed with seronegative RA in 2007 when lots of joints became swollen and painful. The standard morning stiffness was there and the disease responded very well to sulfasalazine. When I moved city a new (and much better) rheumatologist said he suspected it was a reactive rather than rheumatoid arthritis as he’d never seen such good response to sulfasalazine. Never had any joint erosion. Tried tapering down the sulfa a few times with symptoms returning, but after a few miscarriages finally went off in 2012 and symptoms didn’t return. Was officially in remission after a years monitoring and had no trouble with my joints until this year - so six years of drug free remission.

Started having various other health complaints starting end of 2016, about six months after the birth of my second child. First was sporadic wheeziness and dry cough diagnosed as adult-onset asthma in early 2017. My periods went all nuts, which was suspected premenopause but not confirmed. My hair began falling out, as post-pregnancy, but happening continually. My blood sugar was low so was sent for a thyroid test which came back normal. I had recurring chest pain similar to chostochondrotis I’d had years earlier, but this time diagnosed as ‘nerve pain’ and treated with amyltripiline. I began having spells of upper right quadrant abdominal discomfort, sometimes connected with constipation and unquenchable thirst, over the course of a year and diagnosed at the start of this year as IBS. I developed a patch of what looks like vitiligo on my belly, coincidentally at the same spot. I have periods of several days when I’m extremely fatigued, with a stiff neck and dizzinesss. I’ve had a few months of extremely dry eyes which have since resolved itself. And all through this ~two year period, I’ve been low on energy, had trouble sleeping, and often severe anxiety - probably partly fuelled by coping with a stressful job and two young kids. Things have waxed and waned but I’ve never felt fully well and have often felt very unwell.

In spring of 2018, I began having small joint pain and slight swelling again. I saw a rheumatologist, who did a full range of blood tests and, on the basis of past diagnosis and slight synovitis of ultrasound of hands, diagnosed RA again. I’ve been back on sulfa for about four months now and my blood tests have been unremarkable. My joints, which were nowhere near as bad as in 2007, have been quiet from a few weeks after I started taking it - in fact too early for the sulfa to have taken effect - and I had raised trying to go off in case this is not RA at all.

At the end of Nov I had swollen glands for several days and then an upper respiratory illness which passed within a few weeks. My swollen glands remain, though, and the last few weeks I have had absolutely crushing fatigue as well as dizziness and abdominal, back and neck pain. In the last week my joints have begun to ache as well. I’m exhausted no matter how much sleep I have, and wake with a pounding heart as if I’m filled with adrenaline. Work stress and childcare are both reduced, so I don’t think this is anxiety. It’s dawned on me (belatedly) that this could be an RA flare up - though it’s not the same as the mainly joint swelling flares I had a decade ago. So I’m lost knowing how to cope, and also wondering whether all the other weird collection of things going wrong with my body could be RA / autoimmune related.

If anyone’s made it this far, I’d be hugely grateful for any thoughts.

5 Replies
Simba1992 profile image

Reading your story I cannot but wonder how your thyroid test was done since your symptomps very much resamble the symptoms of hypothyroidism. Subclinical hypothyroidism is often not picked up by superficial testing and in your case as in so many others with similar symptoms the estrogene/progesterone balance is tipped towards estrogen dominance. When these imbalances are not corrected other problems follow. I seriously wonder if I had known what I know today and had fixed these problems in time, if my RA would have been triggered. My history was very much like yours. I would recommend you to turn to a functional medical doctor, this way you would get the most thorough analysis what is going on in your body. I wish you all the luck. Simba

helixhelix profile image
helixhelix in reply to Simba1992

Slight diversion, so apologies to OP, as a question to Simba as have been having a conversation with a french friend who has never heard of functional doctors in France. Where might she find one and what might they be called?

Simba1992 profile image
Simba1992 in reply to helixhelix

Sorry HH I have really been searching, with no luck. They do not exist in France. In UK and US, yes and actually in Finland. Integrated medicine doctors you can find as well in UK, France is all about homeopathy and hard meds. Homeopathy is allowed since such a huge part of the population believe in it ( I do not) and because it shortens the queuing to specialists. If you find one please tell me. The Paris area is probably the most probable area if there are any. Simba

There is an institute for functional medicine but the practitioners in France are usually not MDs and this is what I have been looking for. Here is the address to the institute.

Jesnaskah profile image

Just a thought... Thyroid tests can be very inaccurate if you are on certain supplements, for example: biotin. Please Google this. It may be why your thyroid blood work didn't show anything.

Also, everything you've mentioned sounds horrible. I was diagnosed in Aug 2017 with sero-negative RA and have had a host of issues ever since.

Earlier this year, starting in April, I had a never ending rash for months (3 biopsies, and 12 dermatologists later, still no clue). But pretty damn sure it's automimmune related.

I continue to lose my hair in copious amounts, down to 1/4 of my hair and every test I take is negative. Scalp is healthy. Chalk it up to rheumatoid disease.

So ya, I'd say/guess all the weird things you've been experiencing are some sort of automimmune manifestation.

At this point, try to be your own doc and help yourself any way you can. Try a diet that excludes something like meat or whatever could be giving you digestive/stomach pain. Maybe dairy? Just to see if you feel better. Maybe you are gluten sensitive? What could be giving you more inflammation?

Try to get blood work that shows if you have any vitamin/mineral deficiencies and maybe start supplementing... Can't really go wrong with certain things like fish oil, etc.

It's hard finding a doctor who can assess us as a whole individual as opposed to just treating symptoms.

Oh lastly! Stress is a KILLER. In every way imagineable. Causes more pain, I'm guessing it's why I'm still losing hair (chronic TE), and is exhausting! Sometimes we may think our stress level is under control but our body may be suggesting otherwise.

I'm finally going to start talking to someone (psychologist) in hopes of learning how to better cope with everything. Wish I'd done this sooner, as I was such a mess emotionally last year, that I think I'm still recovering from all the turmoil I added to myself just because I didn't even try to get a grip. Literally crying for hours everyday.

I know I'm a minority, but cutting out meat and dairy has helped me tremendously in terms of pain.

I wish you all the best moving forward. Let us know how you are getting along.

Hope any of this proves helpful 🤗


Rose_7 profile image
Rose_7 in reply to Jesnaskah

Thanks for your kind and helpful replies. Lots to think about. I am also thinking a psychologist would be helpful to give me a regular sounding board without feeling I’m further burdening my family.

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