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hand pain

justinelvn
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does anyone out there have pain in their hands --supposedly carpal-tunnel (SUPPOSEDLY CAUSED BY AMYLOID) and if so what do you do for pain

Explore topics in this discussion:

Surgery Velcade Multiple myeloma Pain Thalidomide Revlimid Amyloidosis Trigger finger

10 replies

Muriel

Carpal Tunnel Surgery would appear to be the next step...do check with your amyloidosis doctor.
Muriel
www.amyloidosissupport.com

Paulette1

I have had surgery on both of my wrists for carpal tunnel - and it worked! No more pain. Until you can get help, sometimes a brace will help with the pain - but do ask your doctor and have him refer you to someone if he/she can't help. Sometimes if you catch it early, you won't need the surgery.
Let me know if you have any more questions or want to chat,
Paulette

khankoc2

try the wrist brace, but you probably will need carpel tunnel surgery. My husband had the laproscopic type surgery for his and had minimal recovery time. He ended up with both wrists and trigger finger release being done. He had good results. His was from amyloid but we did not know it then. It was an early sign of it.

MichelleP

Carpal tunnel was one of the first signs that my finance', Michael, had before being diagnosed with Primary Amyloidosis. I hope you are getting treatment for the disease, that is the key to ridding yourself of the pain long term. For Michael, surgery was not a good idea because he developed a bleeding disorder with the Amy and surgery made it worse for him to heal, and he seemed to get sicker with each surgery, so it really depends on what stage you are in before you decide that the surgery is actually the best course of action. I hope you get some relief soon.

Luu

Hello, my hubby had terrible pain in both hands for over six months, we finally got a doctor to run some tests. It was severe carpal tunnel in both wrists. Just before the operation, the nurse turned to me and said, "His kidneys are not functioning properly". I replied, "What"? She repeated it and I asked what should I do? She told me to call his doctor and I replied you mean tomorrow and she said...NOW! Come to find out he was at 4.7 and kidneys were shutting down....Like GFR of 26, then dropped to 14 by the time we found another doctor in another town to do something. It was really a wild ride, but we now have five wonderful specialists and so far his kidneys have not shut down...but he was close. One doctor was just going to put him on diaylsis. We moved on. He has multiple myeloma with amy, which is pretty severe. Predisone helped his kidneys, then of course, on to Revlimid, Velcade, Thalidomide, then back Revlimid. You need to stay on top of that blood work...renal panel especially! Best of health to you and hope this helps.

Nemo

Hi there
When you say a "bleeding disorder" do you mean that he bled easily/hard to stop sometimes and his skin was thin so when he bumped into anything he would immediately start bleeding at the torn skin site. Did he have sort of "blood dots" all over his skin?

GaPeach

Nemo,
Purpura and thin skin are symptoms of Amyloidosis. Many of our patients have this problem and have to deal with torn skin every time they have a band-aid applied. Have you actually been tested for Amyloidosis by having a biopsy performed?

Paula

Nemo

Yes, I actually have MM & Amyloidosis and am presently connected to BU Medical Center & local oncologist. A few weeks ago a nurse at one of my chemo's suggested I use a topical ointment "skin prep" after she saw the huge ripped skin wound I had from a hospital stay from the IV. It's from "smith&nephew" and they rub it onto the site before they put any tape or bandage on now ...WOW!!, what a difference...feel free to pass this info on! Why didn't they think of this or share this a year ago I don't know....just glad to know there is such a thing :)

GaPeach

Can you tell the name of the product. We have been having on ongoing conversation on our yahoo group concerning skin tears and brusing caused from band-aids, surgical tape, etc. I'm sure that many would like to try this product! If you would like to join that support group go to www.amyloidosisonline.com.
Paula

Nemo

It's in a small square package like hand wash wipes. Its actually called "skin prep" and made by that company "smith & nephew". One might be able to ask their chemo nurse/doctor or even pharmacist to order it for them. The adhesive has been wrecking havoc on my arms but this is great and only needs to be rubbed on skin just before they apply a band aide/surgical tape etc. It might be helpful to have some on hand every time you go to to chemo (if they don't supply it at your particular hospital) in case the nurses don't know about it. People may want to ask their nurse if she/he has ever heard of it and if not could they try to find it. I think pharmacists might know about it...may take some time to find it but worth the trouble.

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