Pain in my knuckles...doctors are stumped...HELP!! | Arthritis Information

Hi there,

This is my first post here. I am starting with the RA board because when my symptoms first presented, the first flag was RA. This is going to be long, but I want to be very thorough.

A bit of history first... About 5 years ago I suffered from a very bad case of iritis (I had both scleritis and episcleritis at the same time). I had all the RA tests and other tests to rule out any possible disease, all came back fine.

Now to the present day... In the middle of May 2010, I woke up one night with extreme pain in my knuckles. I would flex my hand and the pain would subside, but would come back after a few more hours of sleep. I kind of blew it off, thinking it would just "go away," but after about a week and a half I decided to see my doctor.

My doctor was stumped. She took x-rays of my hands and neck and ran some tests (I will list the tests later). She put me on a course of prednisone to see if that would help. It didn't.

So I went back to see her for more tests, and after discussing my case with 3 other doctors they decided sending me to rheumatology was the best bet. She again put me on another dose of prednisone, but twice the strength this time, and still did not help.

My first appointment with rheumatology was July 22. He was a bit baffled too so he runs more tests and prescribes Naproxen 500 MG twice a day. He said take it for 3 weeks then set up a phone call with him. 3 weeks go by, the Naproxen still hasn't helped, so he said take it for 2 more weeks and come see him.

So I go back and he's still stumped so he orders a bone scan of my hands. The bone scans come back fine, so since he can't figure out what's wrong with me he refers me to neurology.

Now for some details:

* The pain is in all of my fingers, thumb and pinkies too.

* This only happens when I'm lying down or sleeping, with risidual achiness during the day.

* This has happened every night since the middle of May, and I've tried 3 beds and a couch.

* It also happens during daytime naps.

* The pain is equal in both hands, with the left hand being slightly worse at times.

* The pain subsides when I flex my hands (make a fist then open).

* There is no tingling or numbness, just PAIN.

* There is no swelling in my hands/fingers at all.

* There is no discoloration in my hands or fingers.

Now for the test results:

Component	Your Value	Standard Range	Flag
CREATININE	0.67	0.50-1.40 MG/DL
WBC	8.4	4.0-10.7 K/uL
RBC	4.87	3.6-5.0 10*6
HEMOGLOBIN	13.7	11.4-15.5 GM/DL
HEMATOCRIT	42	36-46 %
MCV	86	80-98
MCH	28	27-34
MCHC	33	33-37 %
ANA SCREEN	Negative, Less than 1:40
RHEUMATOID FACTOR	Negative
CRP (7/06/10)	32	0.0-7.0 MG/L	HIGH
SED RATE	23	0-20 mm/h	HIGH
CRP (7/22/10)	31	0.0-7.0 MG/L	HIGH
HLA-B27	Negative	NEGATIVE-
LDH	157	100-220 U/L
TSH (reflexive)	1.22	0.3-5.5 mIU/mL
CALCIUM	9.6	8.4-10.2 MG/DL
PTH, INTACT	58	15-65 PG/ML

As you can see, the only tests that came back with a flag are the C-reactive protein and SED rate.

I've tried some things on my own: massage, accupuncture, chiropractic...I saw a naturpath doctor who had me do an elimination diet. None of this has helped so far.

So now I'm just wondering has anyone with RA experienced anything like this? Any ideas as to what this could be? I don't like having this "mystery illness"!! I am so tired (literally) of getting such little sleep. I am consumed by this pain, dreading going to bed each night.

Neurology appointment is on September 27...four months of this and no answers. Any thoughts or suggestions would be great appreciated!

I don't know jke, I'm sorry. Other people will post their, more helpful, thoughts I'm sure. It certainly does seem like you have something inflammatory going on, but its odd that pred didn't help. Prednisone/cortisone is a miracle drug for most of us. I'm sorry you are having such a hard time getting a diagnosis. You can definitely have RA with blood work and symptoms like that, but it could be something else.. Try not to get discouraged. It took years for some of the people on this board to get diagnosed. My best advice is to find a doctor[s] who listens and keep looking for that diagnosis. I'm so sorry you are going through this! i would certainly follow up with the neurologist. While tests indicate that some inflammation is going on the lack of response to prednisone would be really really really rare for someone with early RA. Add to that the fact that it only occurs when you are laying down is more indicative of something neurologic than something rheumatological.jke,

I have a few questions.

Which knuckles (DIP, PIP)?

I know you said the prednisone didn't help. How much were you on, and did you feel any better during the time you were taking it?

Have you experienced any fatigue?

Just for the heck of it, try sleeping with a wrist brace (the kind that's used for carpal tunnel syndrome) on the hand that's the worst. I had a similar problem with pain in my left hand for several months earlier this year. Eventually, I started to get numbness in my fingertips, and my RD diagnosed it as carpal tunnel. I wore the brace day and night for about four weeks, and all the symptoms are completely gone. He suggested that I continue to wear it at night, and I'm doing that. I bought this brace http://www.amazon.com/Futuro-Energizing-Wrist-Support-Medium/dp/B0026RHGAM for . It's very comfortable, and doesn't interfere with typing. If you can't wear it during the day, just be sure to wear it when you're napping or sleeping, because that's when a brace does the most good.
treefrog0012010-09-17 17:03:49I was going to make the same suggestion as treefrog.. and I completely agree w/ buckeye that a visit to the neuro would be a good idea..
oh.. and molar? don't listen to him ;)

best to you..be sure to check back in and let us know how you are doing.
Pinched nerve when you sleep???? I agreeI think a neuro would be a good idea.

Thanks everyone for the replies. Here are some answers to your questions:

The knuckles affected are the ones in the middle of my fingers and the ones toward the tips. (Sorry I don’t know if they are DIP or PIP, you’d think I’d know this by now, lol!) Thumbs and pinkies are both affected. The knuckles closest to my wrists are not affected, just it’s just the ones in my fingers so to say.

Prednisone doses were: 20 tabs at 5 mg (first time) and 10 tabs at 20 mg (second time) and it was where I’d start on a higher dose then do less throughout the week. Hopefully that makes sense. Doesn’t seem like very high doses to me though. The prednisone did help a little – I would describe it as “taking the edge off the pain” but the pain was still there -- but as soon as I stopped it the pain came back full force. This happened both times I was on the prednisone. WHY my doctor didn’t up the does or keep me on it longer, I don’t know.

I have tried sleeping with wrist braces on. In fact when this started I was already sleeping with one on my right hand. But since the left hand is affected too obviously the brace wasn’t the cause, nor was it helping!

So as far as my neurology appointment today -- SAME STORY. She has no idea what it could be, doesn’t think it’s nerve related, she thinks it sound more joint/bone/arthritis related, but we’re doing a nerve test (EMG I think she called it) on October 22. So another month to wait again, just to probably find out nothing.

I feel so bad for those of you who have had years of waiting for a diagnoses. I’m on 4 months now and seriously think I’m going to have a nervous breakdown.

But overall I would say not fatigued, but would LOVE to sleep through an entire night w/o waking up in pain!

Hi... If you would like , I can help you with natural herbal medicines to alleviate your arthritis pain ..I had arthritis for 10 years in wrists and hip and now am pain free . Send me an email on silvernile2000@gmail.com if you would like to know more ..So I went back and saw my PCP because I'm so frustrated over all this. She is so great and understanding. We are going to do some trial and error type things with some medications to see if we can control my joint pain. We both agreed that at this point it was more important to try to ease my pain rather than trying to find a diagnosis.

She did tell me that I for sure do not have RA. That was reassuring as that has been weighing on me heavily.

First drug she put me in is gabapentin. It's a nerve drug. She said if it was going to help we'd know in a few days. I'm on day 6 of it and so far it has not helped. But I'm not on the max dose yet so I'm going to give it 3 more days.

Thanks for all the help here.