Other symptoms in addition to pain/swelling - could this be RA or something else?

[CarolineC57]

Hi again everyone! Following on from my earlier post today asking about 'alternative' treatments for RA I wanted to ask the following too. As mentioned in my other post, I'm undiagnosed, symptomatic and have a family history of RA, but my RF is negative so I'm having problems getting doctors to take me seriously. Anyway, as well as the joint pain and swelling (feet/ankles, knees, hips, shoulders/neck, hands/fingers) I've also got the following symptoms. The doctor just looks at me like I'm daft when I mention any of them. So, my question is, are these the kinds of symptoms you'd expect with RA or might there be something else going on? Here's my list of symptoms. Thanks!

Dry eyes; dry, chapped skin; dry hair; 'bendy' ridged fingernails

Severe constipation

Acid reflux, and more recently loss of appetite (I can now only eat really bland foods without feeling nauseous)

Chronic fatigue ... but, bizzarely, also insomnia

Just generally feeling horrible - sick, no get-up-and-go, lack of motivation, etc.

[medway-lady]

Thyroid Failure i.e. Hashimoto's. I think best advice is go back to your GP and also do try to not think about things to much as the mind can play weird tricks on us all. I've never heard of some of those symptoms being associated with RA but only your GP can really help you because it just might be that your not eating enough to make your digestive system work properly and give you enough energy, I trust all the tests you've had done are normal so your B12 is ok, vit D ok, Celiac ok, kidney function ok etc etc?

[CarolineC57 in reply to medway-lady]

Ah, interesting you should say that, Medway. I researched thyroid problems a while ago and came up with the possibility of hypothyroidism as it seems to fit all my symptoms (I also have other symptoms such as hair loss, overweight with inability to lose weight, etc). If you know about this condition, you will know that NHS doctors tend to go by the TSH test alone when there are actually various problems associated with this test. My TSH is within "normal range" so the doc won't entertain the fact that this might be the problem either. I therefore consulted a private doctor and had tests done privately. I've been taking NDT for a while but with no real effect, and I've recently switched to T3 only.

But I'm pursuing the RA possibility too as the pain and swelling in particular seems to 'fit' and, as I said, I do have a family history of RA. I've managed to persuade my doc to refer me to rheumy again - but that appointment isn't until November.

Here's hoping you're right - in which case, the T3 should start to help a bit. If it does, then I think I can discount RA (though I believe that a range of auto-immune conditions (eg. RA, Hashis, etc) do tend to go hand-in-hand.

Oh, and all the tests you mention are OK (B12 is surprisingly high, in fact), except D. I've been supplementing 1000iu D3 for some time and checking my bloods (privately, again).

Thanks for your thoughts on this! It does seem to keep coming back to thyroid issues, which makes me think I might be on the right track.

[medway-lady in reply to CarolineC57]

I've been taking Thyroxine for 20 years or more and doctors are cautious because it is dangerous to overdose on it , it will give you heart problems. You start with a small dose and build up over a fare while. Thyroxine is only available on prescription and please be careful and avoid shellfish supplements as they can mask something or other, not sure I remember what it was but my GP warned me about some so called supplements. I'd really urge you to be careful as too much of some stuff is as bad as not enough. Get tested for Celiac I have that as well as Pernicious Anemia but all are well controlled and I feel great usually. You must be eating normally to get tested for some things so don't avoid gluten until you get tested if you think it might be that which can be confused with Irritable Bowel Disease as well. I really wish you well but to be honest your GP is best placed to advise you really.

[CarolineC57 in reply to medway-lady]

Yes, I know the GP should be the best person to advise but, sadly, mine keeps fobbing me off. For example, I'd been complaining to her of severe shoulder pain for some time, which was met with "It's just your fibromyalgia". To cut a long story short, after I finally managed to persuade her to send me for X-ray on it, it turned out to be calcific tendonitis. I don't know what it is about me but doctors just don't seem to believe me when I tell them I have pain, or take me seriously.

I am seeing a private doctor about the thyroid thing so I am getting medical advice and not just doing it myself.

I was tested for coeliac disease, by the way - that came back OK.

[earthwitch]

spondyloarthritis (PsA - from those fingernails and the dry scaly skin) - its seronegative. I have a mother with RA (and several cousins), but my brand of inflammatory arthritis is actually ankylosing spondylitis (one of the forms of spondyloarthritis). Inflammatory bowel disease goes hand in hand with spondyloarthritis too, and that could possibly be an explanation for some of the gut stuff. Chronic fatigue is all part of untreated autoimmune conditions.

I do think the most significant thing though is your fingernails and skin along with the joint pains- can you ask your GP to refer you to a rheumatologist with a special interest in spondyloarthritis for a second opinion?

[CarolineC57 in reply to earthwitch]

Interesting, Earthwitch, yes those are some other things I came up with in my research. The problem is the last rheumatologist I was referred to didn't even examine me properly - just did the 18-tender point test for fibromyalgia and re-confirmed my fibro diagnosis (I was diagnosed with that around 10 years ago - but my pain is totally different to the kinds of pain people with fibro describe, and I think now that was a misdiagnosis). When I was looking up local rheumys with an interest in spondyloarthritis it turned out that this same one was the only one in my area! So there's no point in going back to her - she won't admit she was wrong and I have no faith in her anyway.

I guess I'll have to wait and see what this other rheumy says in Nov.

[CarolineC57 in reply to CarolineC57]

Oh, and my GP reckons it's not PsA as my skin problem doesn't look like psoriasis.

[earthwitch in reply to CarolineC57]

interesting that the so-called fibro tender points are in pretty much exactly the same places as enthesitis points, and enthesitis (inflammation where tendon joins onto bone) is a hallmark of spondyloarthritis. The difference is in the way they are examined - fibro will produce widespread pain on fairly light pressure. Enthesitis points are localised pain points, and you generally have to put pressure on them from the right direction to get right over the area where there is likely to be inflammation. It takes a clued up rheumatologist to be able to tell the difference - much easier to just do a cursory examination and call it fibro.

[CarolineC57 in reply to earthwitch]

That's interesting, Earthwitch - I didn't know that. What I didn't mention above though, is the fact that only FOUR of the so-called tender points she pressed actually caused me pain. Those were the ones on my neck and shoulders which were (eventually - some time later) explained by the fact that I have calcific tendonitis in my shoulders (it took me ages to persuade my doc to send me for X-ray, but that was what was found when they did).

Of course, fibro shouldn't be diagnosed unless you have at least 11 of those 18 tender points. This rheumy just didn't believe me when I said it didn't hurt when she pressed and mumbled something like "Some people have a higher pain threshold than others". So, as far as I'm concerned, she doesn't do her job properly - hence, I have no trust in her. I don't seem to have a lot of luck with doctors!

[gwynedd]

Hi Caroline, like you I too have shown no indicators in the blood but have had inflammatory arthritis symptoms and psoriasis. My rhuemy sent me for a ultrasound scan reluctantly, she told me it was to prove that I didn't have inflammation. However the results showed inflammation in my joints and I'm now on medication to control it. I suppose what I'm want to say to you is don't give up, it has taken me 1 1/2 years to be taken seriously but I feel vindicated. I how you get some answers soon, Good luck

[CarolineC57 in reply to gwynedd]

Glad you've got somewhere with them, Gwynedd. Can I ask, which joints did they scan? Was it the ones which are particularly painful for you? I'm wondering if I should press for a scan too - perhaps trying to get them to prove to me I'm wrong (which I don't think I am!) will be the best way to do this. My inflammation markers are always high, by the way, but the doctors just put this on my record as "unexplained pain and swelling".

[gwynedd]

I did have the painful joints but I asked for others to be scanned as well which she was willing to do. I know it's so frustrating not being believed or listened to, when I was told inflammation was in my joints I cried with relief! Just a strange way to be, we don't want these diseases but we know our own bodies. Having the scan has given me some answers not all but at least I'm being taken seriously now and bring treated. If i was you I'd press for the scan, it's not an expensive procedure so hopefully your doctor will refer you. Let us know how you get on and don't give up 🏋😁