Difficult Day.... Arthritis in my fingers...

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Difficult Day.... Arthritis in my fingers...

Postby karenb » Wed Feb 23, 2011 11:17 pm

Hi All,

First, I want to thank you for all your support over the past few months. It has meant a great deal while dealing with so much.

Today, at the Rheumatologist, I received some news that I've feared for awhile - I have arthritis in the several of the joints in my hands. It's already changed several of my fingers by a half a ring size in just a few months. I know it may sound trivial compared to SM, but it puts at risk my ability to play the piano and organ. These two things have been part of my life for 37-29 years (I once wrote "music is more than my life - it is my eternity"). I already have pain in several joints so that I wince when I play, but this news is a big blow...

I haven't shared this with anyone yet, because so much of my effort is focused on my father (feeding, excercise, daily hygeine, etc.). It's still sinking in how terrible this news is... I'm scared.

Karen
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Re: Difficult Day.... Arthritis in my fingers...

Postby judyg » Thu Feb 24, 2011 9:00 am

Hi Karen,

I'm so very sorry. This is really rotten news.
I know how much you love to play and I imagine the news has the same effect on you as when you were told about your SM, that numb, bottom of your world dropped out feeling.
Is the dx rheumatoid or osteoarthritis ? Did your doctor tell you options for what you can do to manage this?

Keep those hands and fingers moving. Maybe making sure you warm them up (like you do when you warm up for exercise) before you play.

I don't know what else to say except - I am keeping you and your Dad in my thoughts and prayers.

Take care,
Judy
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Re: Difficult Day.... Arthritis in my fingers...

Postby razzle » Thu Feb 24, 2011 11:47 am

Karen I too play the piano, keyboard and organ , and it has gotten harder in the past years . But I still mange to get out a christmas carol at christmas time . Its something I enjoyed all my life and will remember all the memories I had . R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Difficult Day.... Arthritis in my fingers...

Postby karenb » Fri Feb 25, 2011 8:35 pm

Judy and Razzle,

Thank you so much for your encouragement.

In answer, it's osteoarthritis. The current treatment the doctor is using is Voltaren gel 4X per day to my fingers & knuckles. The rheumatologist didn't want to use anything systemic right now because I'm already on so many meds.

When I went to physical therapy (aquatic therapy), I asked my PT about my hands, and he gave me some exercises that I can do while I'm in the pool. It's also driven me to drag out my old piano exercise books and start drilling - my vow is to do it daily so that I can keep them moving and minimize the pain.

The main difference between this and receiving my SM dx is that I understood what osteoarthritis is, but had never even heard of SM (heck - I had to get a nurse to help me decipher the actual diagnosis, since I couldn't read the doctor's writing!). It was really Wednesday night when I realized the awfulness of what it really means... that was why I reached out.

Karen
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Re: Difficult Day.... Arthritis in my fingers...

Postby tennesseewalker » Sat Feb 26, 2011 4:23 pm

Hi Karen,

Pain and the way we deal with it is a personal thing for each of us. I applaud your resolve to not let this stop you from playing.

Mary
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Re: Difficult Day.... Arthritis in my fingers...

Postby karenb » Tue Mar 01, 2011 10:57 pm

Mary,

Thanks - I need all the encouragement I can get these days! I wrote this post after the dx had finally sunk in (after about 10 hours), and I realized what it could really mean in terms of things I most love. I've already lost so much to SM... my ability to walk, my job, etc... but this felt (and still feels) like the icing on the cake.

I'm getting tired of my old (correction... 29 and holding) body betraying me!

Karen
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Re: Difficult Day.... Arthritis in my fingers...

Postby tennesseewalker » Wed Mar 02, 2011 1:32 pm

Karen,

Same here. I used to be able to quilt and to make pottery. I have a potter's wheel and a kiln that haven't been used in more than 5 years. I refuse to get rid of them in hopes I'll be able to use them again. Fingers crossed...

Mary
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Re: Difficult Day.... Arthritis in my fingers...

Postby karenb » Thu Mar 03, 2011 7:40 pm

Mary,

I'm the same way! I'm hoping that the daily piano playing will help (if nothing else, it perks up my spirits!).

The one I'm having the hardest time with is my car... I use a ramp-van for my wheelchair, but I still keep hoping that I'll be able to walk again and will need my car again. I've already paid 2 years of insurance on a car I can't drive, but I still can't quite accept that the wheelchair is it.

Karen
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Re: Difficult Day.... Arthritis in my fingers...

Postby keggler 1 » Thu Mar 03, 2011 9:01 pm

Hello...I too have arthritis in fingers from playing baseball and bowling many years.I recently started a gluten free diet,and its harder than quiting smoking.Foe me it was a godsend because my hands lower back and neck loosened up,and the tightness went away,I wish I had tried this twenty years ago.

My doctor was pleased with my 3 yr check-up and said all had could suggest some bending and streching exercises.I'm just telling this to encourage everyone to look and alternative types of theories.I'm a fan of Dr Andrew Weil's Daily Blog.Sometimes our environment and the foods we put in our body do as muck harm as good.

Good luck...Jerry in Carolina...
ACM S/M BI Hiatal Hernia EDS III Successful PDF 2007 Dr Rosner
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Re: Difficult Day.... Arthritis in my fingers...

Postby Chiari10 » Fri Mar 04, 2011 12:37 am

Hey,
I was just wondering what made you realize that you had arthritis in your fingers? Did it start with pain? Is it common with CM/SM? Why I am asking is because my daughter got diagnosed 4 years ago and was decompressed then as well, but I have started noticing her fingers just looking different here lately. She says that they don't hurt and she says she is just double jointed. But I am kind of concerned, and if I should be worried I would like to fix something if possible before it gets worse. Her fingers in the lower joints are bowed in and in the upper joints are bent down a little. She doesn't seem to have any trouble using her fingers. But I would like to know what you guys think of this. And also if I do need to get her looked at, would I start with her Pediatrician or Neurologist?

Thanks,
Tina Peters
Shelbi Peters 14 yr old, CM/SM, Syrinx, Basilar Invagination, MoyaMoya
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Re: Difficult Day.... Arthritis in my fingers...

Postby tennesseewalker » Fri Mar 04, 2011 2:53 pm

Hi Tina,

Does she crack her knuckles? That can cause the changes you describe. Just a thought.

I would take her to an orthopaedic hand specialist.

Mary
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Re: Difficult Day.... Arthritis in my fingers...

Postby karenb » Fri Mar 04, 2011 11:58 pm

Jerry,

Thanks for the advice. I can't even imagine gluten free... it sounds almost as painful as chocolate-free. What is the address blog you access?

Tina,

About 4 months ago, I started noticing that some of my rings were getting really tight on me. Shortly before my regular Rheumatology visit, a jeweler friend of mine expanded a couple of them so that I could get them on over my knuckles. Around the same time I started noticing pain in certain joints when playing the piano. When I had my regular Rheumatologist visit, he became suspicious just from my knobby knuckles (try saying that three times fast!). Further evaluation indicated it was arthritis... I started the thread when I realized just what it meant for my piano playing (and didn't want to be rude & wake up my friends on a school night to cry on their shoulders!).

I don't crack my knuckles and, to my knowledge, am not double-jointed.

Karen
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Re: Difficult Day.... Arthritis in my fingers...

Postby Chiari10 » Sun Mar 06, 2011 11:05 pm

Thanks guys for responding about Shelbi. She doesn't crack her knuckles, so that shouldn't be an issue. I think I may go ahead and call some Dr.s tomorrow to see if I can get her looked at. A friend of mine has some arthritis and some of her fingers look like Shelbi's, she said that hers is called swan neck deformity. And she said she is supposed to do exercises with them and she has had some different little things that she has worn on her fingers to help also. But I will be paranoid til I get her checked out.

Thanks again,
Tina Peters
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Re: Difficult Day.... Arthritis in my fingers...

Postby karenb » Tue Mar 08, 2011 11:21 pm

Tina,

I'm so sorry that I didn't answer part of your question. I am not aware of any link between CM/SM & arthritis (other than the rather obvious problem of mis-using & abusing certain joints). My original post was actually kind of venting - I've already lost so much due to SM, and then to have osteoarthritis jeopardize my ability to make music, which is one of the few things I have left was just a bit more than I could handle.

Sorry...

Karen
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Re: Difficult Day.... Arthritis in my fingers...

Postby Chiari10 » Tue Mar 08, 2011 11:52 pm

Karen,

That's OK. I completely understand about the venting thing. I have those days to. And Shelbi really has those days. She used to play softball, cheer, dance. Then when she had her surgery 4 yrs ago, she got released to do anything she wanted her only restriction was not having anything restrictive on her temples, but that is due to the MoyaMoya. But with the timing she missed out on cheerleading tryouts, and softball signups and had just lost interest in dance. And I got paranoid about softball injuries anyways. Then the next year we were in the process of moving schools when tryouts and signups were happening. Then two years past and she didn't try out for cheerleading because of some girl on the squad that was not the nicest person, so finally she tried out for this coming year and she didn't make it. It broke her heart and mine, because she really is awesome at cheering and has a very loud mouth. So of course she decided she would never try out again, but we talked to the sponsor to see what she did wrong so she could work on it for next year. But now she is going to try out for color guards. And she did play volleyball the past two years but it is starting to get more aggressive and making me paranoid. But I just have to keep encouraging her to do stuff, because as you know, with her medical conditions, who knows when she will not be able to enjoy sports anymore. And now that I am getting worried about her fingers. But anyways sorry to just rattle on and on. Its nice to have a place to visit like this where other people understand and can answer questions.

Tina
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