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 :weep:

[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

[ckelley116]

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

My insurance doesn't require referrals so I was able to see the hand surgeon without my GP sending me there (although she did recommend it when I first started having issues last fall, which I thought then were related to carpal tunnel syndrome). The hand surgeon is the one who said I needed to see a rheumatologist when I asked if I should see my GP for a blood test.

I'm finding periodic, minor comfort in the fact that I don't have inflamed, red joints, fatigue or serious pain, but that comfort doesn't last long. This isn't my first HA rodeo and in periods of sanity I realize how ridiculous it sounds to say that it can't be anything else. I wouldn't even be here if the surgeon hadn't said "inflammatory disease" - I'd be thinking "overuse injury". Even with the involvement of my left hand, which does not get overused. Unfortunately though all of my anxiety-reducing techniques (journaling, coloring, drawing) require use of my hand, which I can't use without reminding myself that something's wrong with it, which starts the spiral all over again. It's quite the vicious cycle.


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

Thank you :)

[ckelley116]

The nerve conduction study I’ve been waiting a month for was supposed to be this morning but they cancelled on me. Woke up super early and wasted a personal day of work, and I’ll have to request another one when I get rescheduled. Haven’t heard from the rheumatologist either about scheduling that appointment. Starting to feel like this is never going to end.

[Elen]

So basically I have wasted my time telling you how I was diagnosed.

My rheumatoligist consultant still relies on my blood tests to determine how my treatment is going.

[melfish]

So basically I have wasted my time telling you how I was diagnosed.

Yes, it appears so

OP, RA is easily ruled out by a simple blood test. You don't need to see a rheumy for that. You are doing yourself no favours by convincing yourself you need specialist treatment when you've not even been diagnosed with anything.

You say you need help through this, so why not listen to Elen, who actually has the condition ...

[ckelley116]

So basically I have wasted my time telling you how I was diagnosed.

Not at all. The nerve conduction study was scheduled a month ago when my hand surgeon was operating under the assumption that all I had was carpal tunnel syndrome. When he decided it was more likely that my symptoms were being caused by an underlying inflammatory disease, he advised I keep the appointment but see the rheumatologist too. I never expected the NCS to diagnose (or clear) me with RA. But it was supposed to provide me with more information about my situation. I understand very well how RA is diagnosed. I explained in my previous reply that the rheumatologist will be the one giving me the blood tests. That’s how I was told to do it. Maybe I wasn’t very clear. The frustration of being kept waiting is not helping my anxiety. What I’m looking for right now is support while I’m waiting for answers. I thought that was what we did here.

[Elen]

Support yes but fuelling and enabling your fears no.

[melfish]

Time to give up when the hostility comes out

[ckelley116]

Time to give up when the hostility comes out

There was nothing hostile about my reply. I’m sorry if it read that way. My intent was to explain why I’m going to a rheumatologist rather than my GP, since there seemed to be some confusion over that part. I specifically asked the hand surgeon if I should see my GP for blood tests. He specifically said I should go directly to a rheumatologist, and gave me that doctor’s name. That might not be the way it’s normally done, but it’s what I was told to do. In the meantime I thought I would come here for some help in allaying (not enabling) my fears while I wait for information. I’ve done that several times on other forums in the past and have gotten some great support. That’s all I was looking for. But focusing only on the fact that I’m “doing it wrong” isn’t helpful, since I’m only doing what my doctor directed me to do.

[tryingtosurvive1]

You don't seem horribly hostile to me.
Make sure to get blood tests for inflammatory markers, a MRI, and a nerve conduction study. Sounds like all that is in the works already.
I may regret saying this on an anxiety board but your surgeon could have been thinking of relapsing-remitting MS, since you had hand numbness/stiffness that came on and went away once already with steroids. If you do have that it will show up on an MRI.

I think you will have some answers soon and you will NOT have anything that can't be treated successfully.

[ckelley116]

You don't seem horribly hostile to me.
Make sure to get blood tests for inflammatory markers, a MRI, and a nerve conduction study. Sounds like all that is in the works already.
I may regret saying this on an anxiety board but your surgeon could have been thinking of relapsing-remitting MS, since you had hand numbness/stiffness that came on and went away once already with steroids. If you do have that it will show up on an MRI.

I think you will have some answers soon and you will NOT have anything that can't be treated successfully.

Thank you - I appreciate that! Funny enough, MS isn't even on my radar. I went through that scare a few years ago (not for me, but my husband; he's fine of course). I also know a few people who have it and they're doing great. I like to think I'd be okay if it were that. Eventually. It's the thought of joint pain, medications with (seemingly) terrible side effects, eventual disability and things like that which terrify me. I am petrified at the thought of losing my independence and having to quit the jobs I adore. But you're right; nothing I can do until I get the tests. Hopefully soon.

[JasoNY]

I was diagnosed with RA and none of my blood shows I have it, based on my symptoms it was determined I have it and treatment was started. It's called Seronegative RA and isn't rare at all. It is possible as the disease progresses a person can become Seropositive and blood work will then reflect the disease, but that could never happen as well. If you are diagnosed by a doctor and are having doubts, get a second opinion and if that comes back the same... start treatment.

[ckelley116]

I'm sorry to hear that! I hope you're doing well! I haven't seen any doctors yet for tests for this particular disease; although I finally found a rheumatologist in my network with good reviews who isn't pushing 80 years old, she can't see me until March 12. And even though my GP confirmed that a rheumatologist would be best but she still wants to see me, she didn't have any appointments until February 8. And I've had an MRI, nerve conduction study and EMG, but the hand surgeon doesn't feel comfortable deciding on treatment until we know for sure what's going on with my tendons. So, I wait. In the meantime my median nerve stays compressed, furthering the damage and possibly affecting it permanently, and my anxiety is skyrocketing. Every time I feel a pain in one of my joints, no matter how mild, I freak. Every night I go to bed afraid that when I wake up something will have swelled up overnight. This morning I had a mild pain in the ball of my left foot whenever I took a step, accompanied by what seemed to be a crunching sensation. It went away after about half an hour and from what I've heard, RA pain cannot be classified as mild (mild enough that I probably wouldn't have given it a second thought if I wasn't fixated on it), but still. If my foot goes I can no longer convince myself that my tendon issues are due to Repetitive Strain Injury, which I know is way more likely as long as only my hands/wrists are affected. I could seriously punch that hand surgeon for even planting this seed. I was doing really well handling this until he said I probably had an inflammatory disease.

[Elen]

I have RA and most of your "research" is faulty in the conclusions that it has led you to believe.

[ckelley116]

I have RA and most of your "research" is faulty in the conclusions that it has led you to believe.

So RA pain can be mild? As in barely noticeable unless I'm fixated on it? I haven't actually done much research - I haven't allowed myself to. But the bits I have read indicate that the pain is bad enough to seek the advice of a doctor, and mine certainly isn't. If I didn't have the tendon stuff going on I wouldn't give it a second thought, even with HA.

In case I'm not being clear, when I talk about nerve compression I'm not referring specifically to RA, since I know RA doesn't attack the nerves. I'm referring to the carpal tunnel syndrome I've developed due to tendon sheath inflammation which can be caused by RA, and which is causing swelling in my wrist that's impinging the median nerve. That much has been confirmed by my hand surgeon.

I realize as someone suffering from RA my questions must be annoying to you, and I apologize for that.

[ckelley116]

Found the source of the mild ache and the “crunching” in my left foot. If I press the ball of my foot under the toe, even lightly, something pops. It doesn’t happen on my right foot. Don’t know if it’s a tendon or the joint and I refuse to Google. But I’m crying and I feel like I’m going to throw up. I can’t imagine waiting 2 more months before anyone even starts to look for answers. How am I going to do that?

[tryingtosurvive1]

I'm sorry you're suffering. The surgeon shouldn't have made that remark--it just left you hanging until you could see an appropriate specialist. :(

Do either of your doctors reach out if there's been a cancellation? That can be a way to get in faster.

---------- Post added at 18:34 ---------- Previous post was at 18:31 ----------

also, whatever's going on I suspect you are in no great immediate danger. Try to remember that. Put your hand on your chest and breathe deeply-it will remind you of your healthy heart and core.
<3

[ckelley116]

Thank you :) yeah I’m not too impressed with his bedside manner. I’m sure he knows his stuff but seriously, how hard is it to think before you speak?

The rheumatologist did put me on the waiting list so I’ll be getting a call if someone else cancels. The bugger is that I’m a new patient so I get that special “new patient” appointment and I’m not sure how likely it is that someone will. I just want to put all this behind me so I can get into treating my real illness. But with my foot still popping this morning...ugh. It feels like it’s going to be impossible to get past either of them.

[ckelley116]

Day 3 of a popping tendon or joint in the ball of my left foot, just below the third and fourth toes :meh: It's not getting worse but it's not getting better. I find myself tapping my foot against the floor (when I'm standing), the footrest when I'm driving, and my desk chair (at work) to see if it's still happening. It is. And that constant checking is not helping my mental state. I keep trying to tell myself it could be a whole host of things, from the way I sit to my shoes, but nothing will stick. My left wrist aches a little, too. I wish I'd never read anything about my tendon issues so I'd have no idea how they all could fit together.

On the bright side, I ordered a book on CBT from Amazon yesterday and it's shipped already. So at least I can try to start getting that under control. Once all this RA crap is behind me I'm going to get seriously into therapy. I'm getting too old for this stuff.