Real Hands, Real People

Thank to my friends for sharing stories about their hands.  I find it helpful to hear what others experience and know I am not alone.

Note: Bear in mind that some of the people speaking have had rheumatoid arthritis from before biologic drugs were discovered, and are dealing with joints that were damaged due to ineffective treatment.

Gail's Hands:

On my right hand the first knuckle is already deformed and some of the others are too but not as much as that first one, and that's a part of the recent increase in pain in my hands.  The little knuckle has been hurting while my finger is swaying even more.  Sometimes my fingers ache like crazy but that comes and goes.  Sometimes I have deep aching here and there and that comes and goes.

Ring splints

Allie:

I have the swaying of my right hand - Ulnar Drift.  I have a lot of swollen synovial tissue under the fingers on the knuckles - especially my right hand.  About a year ago - after remaining fairly stable for years - the middle knuckles on my fingers became permanently swollen and I can no longer wear my rings because I can't get them over the knuckles.  It was mainly my right hand that was affected.  But, later on - my left hand also is having changes and the middle finger on my left hand is swollen and painful.

The pain in my hands kind of comes and goes or maybe I have just become used to the pain. The night splints that the occupational therapist made for me helped a lot but after several years, I quit wearing them because I felt I didn't need them. Now, I think I probably need new splints made - especially for my right wrist.

Resting splints

Julie:

I really didn't realize how awful my hands looked until I saw a fairly recent photo of me with both of my hands in front of me.  My fingers look awful and my right wrist is all swollen.  My right wrist is so painful that I am having problems cooking.  Well - also standing on my lousy feet. I never had the sensation that the joints are moving and tugging.  I think everything on me went slowly and I just didn't notice.

I saw a hand surgeon early on in my trip with RA.  At that time, it was really my right index finger that was really bothersome.  He described the surgery he would do and said it would take 6 to 8 weeks for recovery.  Then, to this statement, he said "I will become your best friend".

I didn't like the sound of the surgery or the fact that he expected me to have many more hand surgeries - so I just passed on the entire thing.  Yes - my hand looks awful and at times is painful.

Angela:

I can't say I ever liked my hand surgeon. I respected his skill at surgery and put up with the rest. He's the one who put his hand up like a stop sign to keep me from asking questions, who told the students not to  worry if patients said that they had trouble with personal care because "they'll figure it out" (and this with a room full of Occupational Therapists beside him).

My friend saw the same doctor once and he told the woman on the other side of the curtain, "Fine, we'll go ahead and take care of your hand" then when she was gone he said to the resident - "It will never be better". She told him that she hoped he would not lie to her the same way.

Polly:

The hand surgeon I saw in 2004 wouldn’t even attempt to repair my hands because he said the surgery I would have to have is not perfected. He said as long as I can use my thumb and “pointer” finger left to use, that I would be fine unless I was in pain 24/7.  Well I am not in pain, but I can't use any of my other fingers. They’re in a fist now.

I don’t think he would have said that had it been his hands.   It's maddening how they pooh pooh it all. So he didn’t even suggest having the surgery way back then.  Now when I went to another hand surgeon this year he said it could be done but it might or might not make me more functional. It depended on whether you talked to the Dr face to face or read his clinical summary where he said it was not likely to help. I think the summary is called CYA.

I asked him also...both hands at the same time?  Yes, you’ll still be able to use a couple of your fingers...  I said you know I live alone?  have pets? That’s what rehab will help you with. We can get you  a home health aide, house cleaning help. I can't even turn on the ignition of my car without a special soldered key turner.  I walked out knowing he wasn’t really concerned about me. When I found out he told me one thing and wrote another, I knew I would live with these hands.

Loyal pet Dolly