This is all very interesting and informative! I have the swan neck deformity on my middle right finger, it is really partcially swan neck-it swoops down in the middle joint. And it is mild to moderate, and some other fingers are doing it-but less than that one. But on my left middle finger-i feel that is is trying to do the boutiner-im not sure though, is it possiable to do both?
Hi Cheryl,
Ah, so you know what I'm talking about. Our Swan and Boutenniere fingers are the opposites but very much the same. I see no reason that you couldn't develop a Boutennier deformity on the left hand while you have Swan on your right hand. In OT, I did find that gentle massage of the stiff muscles in the finger did help to release some of the pressure on the tendons.
Thanks for this great nuts and bolts article! That's interesting that plaquenil caused tons of fatigue for you. I still struggle some with fatigue, and wonder if it could have anything to do with the plaquenil? Something to think about.
Hi Sara,
In talking with my rheumatologist, she said that fatigue was not a side-effect of Plaquenil. But she also said that I have every right to have a unique reaction to the drug. I have wondered if there were other causes of the increased fatigue at the time and if I shouldn't try Plaquenil again. But I really don't want to be asleep on the couch for 20 hours/day again.
In the meantime, it's nice to know we can each be special. 
I can relate to wondering which disease is causing this pain. I'm on Arava 20mg once a day, Placqunil 200 mg twice a day and 600 mg Remicade every 6 weeks.
At once point in my RA journey the placquinel is the only drug that worked for me.
I've taken most of them at one point or another although I can't take the NSAID's anymore. They have torn up my stomach and left with me with class 4 GERDS which in turn caused a Barrett's Esophogus which is considered a pre-cancerous condition.
I have problem with the little fingers on each hand trying to twist out of shape. I'll sit and rub them especailly around the crooked parts to try to straightening out. So far they haven't twisted all the way. I do have a couple of swan fingers which I also rub all the time and they are not getting any worse so something is working probably the meds I'm on.
Anyway, your story was very interesting and I will be following it as you progress in this journey with RA
Hi Mary,
It's very nice to meet you. Sorry to hear about the GERDS and Barrett's Esophagus. I understand what you mean by rubbing your fingers to try to straighten them out. I check the range of motion frequently in my finger joints to try to keep them flexible. Glad to hear that your Swan fingers are not getting any worse.
Great post! I am glad you will not need the surgery. My DX started at the Ortho hand surgeon as well. My RA doc finally told me I didn't need to see him again for awhile which was a relief to me! I hope you feel better soon. Glad you don't have the severe pain.
Brad
Hi Brad,
Nice to meet you and glad to meet someone else who started this journey with the hand surgeon. I was thrilled I didn't have to seriously consider Carpal Tunnel Release surgery. The idea of it frightened me so. Glad that you didn't have to see the surgeon any longer either. Thanks for your comment. I look forward to getting to know everybody.
Hi - I just thought I'd chime in with with my experience. I was diagnosed with RA four years ago, and there was already serious damage in my right wrist & hand. Although RA is supposed to be symmetrical, I have not had a lot of problems with my left, though I'm starting to get more pain now. But while I was off Enbrel after ankle surgery a year ago, I noticed more problem with some numbness in my left hand, between 3rd and 4th finger. I'd had it before, coming & going, but finally got tested for carpal tunnel - it was severe, as it turned out. So, 5 months after my right ankle surgery, I had carpal tunnel release on my left hand, and am glad I did. My local orthopedist is a perfectionist (so his nurses tell me) and did a beautiful job. Now, less than a year later, you can't even see a scar. Though my hand will sometimes be stiff in the morning, the numbness has not returned - it did take a full 7 weeks after the surgery for the numbness/tingling to go away - I'd just told the doctor at 6 week checkup that I was kind of discouraged - he said give it some more time, and he was right.
The kicker is (and this related to the problem diagnosing between CTS & RA), that when my rheumatologist heard about it, he said a lot of times, the CT problem will go away when the patient gets on the biologic meds, because it decreases the inflammation of the nerves, I guess. But I had still had some numbness/tingling, even with the Enbrel, so it was the right decision for me.
There's one more note: irony! With the nerves not compressed, I actually have more pain in my hand - someone else had told me this happened to them as well. But I'll take the feeling in my fingers, even with a bit more pain...I can still play some piano and guitar (though much much less than before), and it's worth it to get the feel back! All's well taht ends well.... on the other hand, literally and figuratively, I'm going to wait, even though the wrist is in bad shape, I've adapted to doing most things without bending my wrist - even strumming guitar. And after 3 surgeries last year (the third one was taking out an orthopedic screw from my right ankle after it all healed), I hope I won't be seeing the operating room for a long time! or at least until I'm darn sure it's the right thing to do.
Cheers -
Ellen
Hi Ellen,
This is wonderful information to share!! It's good to hear a story of someone who had a successful and satisfying CTR procedure. I had not heard about possible increased pain since the nerves are no longer under pressure. Very interesting.
I understand what you mean about getting the feeling back in your fingers. Due to MS, the four finger tips on my left hand are dull and numb, as are the tips of my index finger and thumb on the right hand. I miss the feel of the piano keys, but am happy that the fingers do what I wish them too most of the time now.
I look forward to learning more from your experiences. Thank you for sharing this part of your story with me.
Thanks, Lisa.
I'm a college secretary (though never intended to be! trained as a teacher) and so I know a LOT of secretaries who have been through the carpal tunnel release - some with both wrists. I actually was surprised to have this happen to me, because in my 30s, when I was under a lot of stress emotionally & physically, (before RA) I developed repetitive motion problems, but it was not carpal tunnel. (I got pain in my wrist and the middle of my palm on Good Friday - boy, did that make me stop & think, what is this a sign of!) But that was before ergonomics was well known, and they rearranged my work situation to be more healthy, and I never had any more serious trouble with my wrists that wouldn't go away with rest until the RA . (Though my neck difficulties started at the same time...)
I have read that the CTS can come back if a person doesn't change their situation/habits/work patterns. I try to be careful. I had switched to using the computer mouse from right hand to left hand to avoid the RA pain, so I ended up with CT in the other hand!
Thanks, Lisa.
I'm a college secretary (though never intended to be! trained as a teacher) and so I know a LOT of secretaries who have been through the carpal tunnel release - some with both wrists. I actually was surprised to have this happen to me, because in my 30s, when I was under a lot of stress emotionally & physically, (before RA) I developed repetitive motion problems, but it was not carpal tunnel. (I got pain in my wrist and the middle of my palm on Good Friday - boy, did that make me stop & think, what is this a sign of!) But that was before ergonomics was well known, and afterward they rearranged my work situation to be more healthy, and I never had any more serious trouble with my wrists that wouldn't go away with rest until the RA . (Though my neck difficulties started at the same time...)
I have read that the CTS can come back if a person doesn't change their situation/habits/work patterns. I try to be careful. I had switched to using the computer mouse from right hand to left hand to avoid the RA pain, so I ended up with CT in the other hand!
I learned from other secretaries 3 simple wrist exercises to help avoid problems, and they are similar to what the Tai Chi for Arthritis includes: (make that 4 if you do all of them). Do them gently - - -
i) hold out hands palms down; move hands right to left and back a few times
ii) move up and down a couple of times
iii) twist them palms down to palms up and down again a few times.
iv) open and close your fists fully, extending your fingers when it's open (this last one is from Tai Chi warm-up)
These will help to keep hands more relaxed and increase blood flow. It takes less than a minute, so you can stop and do them often if you are on the computer keyboard for long periods of time.
Hope this helps someone - wish I'd know about them a lot sooner! So simple...
Great post! And it will make great reference material as you show the different therapies working in a real-live person. I'll definitely be referring to this post in the future when answering questions.
Thank you Lene! I hope that what experiences I do have to share are helpful to people.