I want my hands
Posted , 8 users are following.
Good day all,
I hope those you are having a good day, where ever you are.
Intro for those don't know my story: diagnosed with GCA and PMR in June, and have longstanding
secondary Progressive MS. Am on High Dose Pred for GCA and then the PMR will be addressed. I am not pleased with my Rheum's taper schedule for GCA but that's a topic for the future if this becomes a problem.
My story today is my hands. I want them back. They are barely functioning, clumsy, greatly altered sensation, and it feels as if I have no "fingerprint" lines on the tips, when I feel the tip of one finger with another. Like, no texture there to work with. They look like skeleton hands.
They are the only thing I have, as I live a disabled home-based life due to MS. I can walk and do well here and in our yard. I use a walker when away from the house. I do not drive. I've kept sane with my quilting, sewing, knitting and keeping house. Now I've got nothing. I am slowly knitting a baby blanket, using a thicker yarn than I usually employ, so at least have that. I cannot pin fabric together to sew a seam. I'm trying to make a bag and it's torture. I won't even look at making a quilt block, that's completely out of the question.
My neurologist does not believe it is MS, due to the onset timing being coincidental to the PMR and
GCA arrival and also that it is bilateral and confined to just my hands and wrists. (I do not have a relapsing form of MS, and he said even if I did, this presentation is simply too atypical of MS).
I'm guessing there's no answer to this, and perhaps I'm just here to complain!
Thanks for listening.
0 likes, 7 replies
Michdonn Guest
Posted
Sounds to me you have a right to complain Angela. Well you come to the right place. We are all on the same PMR/GCA journey. I am a ski instructor, PMR put me in a wheelchair, the high levels of Prednisone turned me into Mr Hyde. I sometimes scared myself. The forum helped me turn things around and I taught skiing the past two seasons and working to get in shape for the next season. Take your time learn as much as you can about your conditions. The is not a race take your time.🙂
Guest Michdonn
Posted
Thank you Michdonn, I am glad that you have returned to your skiing life.
One thing I've not done is turn into a Mr. Hyde. I guess 35 years of MS has taught me something, I'm not sure what though. I guess I've learned how to be tortured and not scream. I'm always intrigued by the stories I read here... you ended up in a wheelchair, that's rough.
I just sucked up what ever came along, thinking it was MS. I went to my neuro and PCP for two years, and to two different rheumatologists "EVERYTHING HURTS." Yet I continued to function. Then in March it all got so much worse, and I knew it was not MS. And I humored the PCP into checking my Sed Rate and CRP, and ta da. PMR and GCA (confirmed by biopsy).
As far as I can tell, the only way to turn things around is to stay on prednisone for as long as it takes and taper for as long as it takes, and pray for a relapse free healing, no diabetes, no bone loss, etc., etc. I am exhausted from the prednisone and from the fatigue of PMR, GCA and MS.
My Rheum does not talk about the road ahead, he just talks about what I must do now. I suppose I should be used to that, these auto immune disorders are different in each body. There is no map.
I do not know how to live without my hands. I use a walker and my hands are all I have to keep me occupied. I am completely crippled at this point and have no idea how I'll get through this.
peggy_56092 Guest
Posted
It took about six months before I could again wear my rings and for the fingers to become normal.
Guest peggy_56092
Posted
Thank you for your post, Peggy,
Putting on my rings is no problem..... my hands are so atrophied the rings barely stay on, My hands are nearly 100% crippled at this point,
Would you mind sharing with me how your hands functioned and felt during the time they were bothersome?
peggy_56092 Guest
Posted
It's been so long ago (maybe over 3 years) and it may have been just before I was diagnosed and given prednisone. Very painful and seemed to affect my thumb and forefinger in the beginning. I also get carpal tunnel symptoms when I garden too much. Wherever the pain is, rest. The pains seem to come out of no where until you realize you might have over exerted. Unfortunately, this may not apply to you. I hope your pain goes away soon.
Guest peggy_56092
Posted
Thank you Peggy, its nice that it's so long ago you don't recall the details!
Every bit of both of my hands hurt, along with my wrists, this is rough
the rheum never told me to rest anything! Over my course of MS I've learned to push through everything and anything, every day. That Ms motto "keep moving."
im disappointed in the lack of info this rheum is supplying i will be calling around to Massachusetts General HOSPITAL to find a new dr the lack of info and guidance i presently have is just not working
tonight everything hurts
Silver49 Guest
Posted
I am so sorry that you are having problems with your hands which I realise are so precious when you have to contend with so much. I have had problems with pain of varying degrees in my hands and wrists on the PMR journey. I found that it was similar to what must be repetitive strain injury. The answer was to rest my hands when they were painful and come back to what I was doing at a later stage. It affected many tasks but it improved over time and as my PMR was reducing in severity. It was so frustrating but that would be as nothing compared with how it will be for you. I think like everything else on this journey it is better to do a little, rest the hands and come back to whatever you have been doing. I am very recently off Pred and can do most activities again. The pain in the hands lessened as time went on. Best wishes.