Spiraling - rheumatoid arthritis

[ckelley116]

Hi all...I'm a refugee from Anxiety Zone, from the US, and I'm really glad to be a part of this group! My HA's been pretty quiet lately, until a few days ago. A little history...

Last fall I was cutting a butternut squash when I must have moved my right hand wrong and tweaked something in my wrist. It wasn't painful, just uncomfortable, but the next day I woke up with some clicking in my wrist and hand whenever I bent/straightened my fingers. It would go away after a few minutes and stopped happening altogether after about a week. But I started having constant numbness in the fingers served by the median nerve, assumed carpal tunnel, and bought a brace. I made an appointment with my GP who said yes, it sounded like carpal tunnel, constant numbness was normal because my tendon was probably swollen, and did a strength test where she determined I wasn't experiencing any weakness. She prescribed me prednisone and told me to keep wearing the brace. Following that advice, my symptoms disappeared in about 6 weeks.

I had no further symptoms until the first weekend in September, when I again started waking up with my hand/wrist clicking. I wore the brace again to sleep and it stopped in a few days. No numbness or other CTS symptoms that time.

Then, the first week in November, the clicking/popping started yet again. I put on the brace, confident it would help, but it didn't. Then I started feeling pins and needles when I woke up in the morning, but changing position would make it go away. That lasted for about a week until my hand went mildly numb in the same fingers. It was bearable, but over Thanksgiving just got absolutely terrible. A deep aching pain, clicking in my wrist that lasted all day, terrible constant numbness and finally a complete inability to bend my fingers upon first waking up. I made an appointment with a hand surgeon who determined I have a loss of pinch and grip strength and weakness in the APB (thumb) muscle. He suspected CTS and advised me to get a nerve conduction study/EMG. He also mentioned tenosynovitis, which was causing the clicking in my wrist and stiff hand. I made the appointment for the NCS but they couldn't see me for a month (it's now only 6 days away). In the meantime my symptoms kept getting worse until I couldn't bend my hand during the day either. My fingers are constantly numb. The discomfort is unreal. Fearing I did permanent damage to my nerve and tendons by forcing my hand to bend (but still thinking it wasn't anything that couldn't be fixed by a carpal tunnel release and tenosynovectomy), I got a last-minute appointment with the hand surgeon. He said "you definitely have something else going on. You have tenosynovitis but the question is why. Probably an inflammatory disease." He told me to make an appointment with a rheumatologist.

So of course I went into full panic mode. I have an MRI tomorrow and my mind is going crazy thinking of the terrible diseases I could have. I've landed on systemic scleroderma. I don't see any other symptoms of that, though. My right (affected) hand does look slightly different - skin a little puffier and less lined, but I think it's always been that way? I don't have any shiny skin patches or heartburn. And it's rare - my only risk factors (that I know of) are that I'm a 36-year-old female. As far as the other possible diseases (RA, lupus, etc.) go, I don't have any symptoms of them either. No fatigue, no stiffness (other than my hand), no swollen or red or inflamed joints, no rashes. Tenosynovitis can be caused by overuse and I'm on a computer all day for work and then in my free time I'm a novelist and graphic designer. I definitely overuse that hand. I wouldn't have suspected an autoimmune disorder - but the surgeon brought it up. And now I'm petrified. I think I'd even be okay with RA or lupus, since it seems they've made great strides as far as treating those diseases goes. But systemic scleroderma terrifies me. I used to work with a guy whose wife had it and I remember how bad her condition was.

In the meantime, I've started waking up with what I think is trigger finger on my left, otherwise unaffected hand. Scleroderma is typically symmetrical, and the fact that my left hand had no symptoms was a comfort. Not now.

Help

[melfish]

You don't have a single symptom of scleroderma, systemic or otherwise. Do you have Raynaud's? That's the presenting symptom in most cases.

[ckelley116]

You don't have a single symptom of scleroderma, systemic or otherwise. Do you have Raynaud's? That's the presenting symptom in most cases.

I do not. That's why rationally I know I'm being ridiculous - but since my doctor suggested it, rather than the other way around, I'm scared. I'm so used to being the one bringing up ridiculous diagnoses and getting shut down. I'm not used to the doctor being irrational!

[melfish]

But your doctor didn't. He said an inflammatory condition. That could be A LOT of things, most of which you or I haven't even heard of. You went to scleroderma because it's the worst of them. I recently developed Raynaud's for the first time at the of 49, so I have been reading up on these things. You don't have any symptoms! And apart from the Raynaud's, nor do I

[tryingtosurvive1]

nothing here sounds like scleroderma. (In my hypochondria I've read blogs about that.) <3

[ckelley116]

But your doctor didn't. He said an inflammatory condition. That could be A LOT of things, most of which you or I haven't even heard of.

Interesting...I see what I did there. He said "inflammatory" disease and I replaced it with "autoimmune". I guess because the "inflammatory" diseases most associated with tenosynovitis are autoimmune - RA (no symptoms), lupus (no symptoms), diabetes (no symptoms, plus a blood test with healthy sugar levels 7 months ago), and scleroderma (fingers look slightly puffy and I fit some of the criteria - that must be it!).

Rationally I still think overuse is most likely, but why didn't he mention that?

[ckelley116]

I’m currently experiencing my third (and so far worst) bout of tenosynovitis in 14 months. It’s causing carpal tunnel syndrome symptoms in my right hand, for which I saw a hand surgeon expecting to be told I’d need a carpal tunnel release. My biggest fear was that my median nerve might be damaged and I might not regain 100% use of my hand once healed.

Instead the surgeon said I probably have an inflammatory disease causing the tenosynovitis. He sent me for an MRI, which I had Friday. And told me to see a rheumatologist. Tenosynovitis of the hand and wrist is a common early sign of rheumatoid arthritis. At first I thought “no way, it’s only in one hand. RA symptoms are symmetric.” But then the ring finger of my other hand started triggering every morning and I’m feeling aches in my knuckles and left wrist. Nothing crazy - mild enough that they probably wouldn’t even register if I wasn’t concentrating on them. But they’re there. And now I’m scared.

[ckelley116]

In a complete panic today. My lower back, which my GP diagnosed as a bulging disc last spring and which hasn't bothered me since I finished taking the prednisone she prescribed back then, is starting to ache again. Maybe it was RA then and has just been in remission? My left hand feels weird and my right middle finger is stiff straight down to my wrist. I don't have any major pain or visible swelling but I don't see what else this could be. I submitted a request for an appointment with the rheumatologist the hand surgeon recommended but have to wait for them to contact me and let me know when it is. I'm going to need some help getting through until then, I think. I honestly don't see how this could be anything else but rheumatoid arthritis.

[Elen]

We in the UK complain about how long it takes to see a specialist but when I see posts from the States it seems that your healthcare system goes the wrong way.

I have RA and I can assure you that it is not a symetrical disease.

BUT I was diagnosed by a blood test ordered by my GP before getting near a rheumatologist, and dont understand the logic of you going there without doing this first.

I would also do a search for "I dont see how this could be anything else" it is everywhere on the HA boards

[Elen]

Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Elen