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Elehos

Hi Janey--and Anyone Else!

7 posts in this topic

Hi Janey,

 

At long last I do have an appt. with a rheumatologist coming up in July, and hope to get a finalized diagnosis. My other doctors are 100% sure of OA, and 99.9% sure about the sclero and lupus at this point, but there are other odd things going on as well. Polymyositis might be part of my problem, but was wondering if you could list some of the symptoms you've experienced and how it started. Also, is it possible to "undo" any of the muscle weakness and atrophy, even if it's just a tiny amount? My legs are the biggest problem, and it's hard to believe that at one point (eons ago) I could outdo the guys in leg strength! If you've already gone through this a million times, maybe you could include a link to the topic so you don't have to go through it all again. Thanks!

 

Hugs and best wishes to all,

 

Elehos

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Elehos,

First of all, I'm glad you FINALLY got an appointment with a rheumatologist! It's about time.

 

With my poly I found myself getting continuously weaker and weaker. I was an avid walker and lifted weights 3 time/week. My walking distance over a 6 month period went from 4 miles/day to zero. I just didn't have the strength nor the stamina to walk around the block. I was having to go down on the weights and reps and finally had to stop because the after workout soreness was too much to bear. It became harder and harder to get out of chairs, off the toilet and off the floor. Washing my hair become difficult because my arms and shoulders were too weak to hold them up there. I couldn't lift my head off the pillow in the morning without using my hands. Breathing when laying on my back was extremely difficult and going up stairs became impossible.

 

Since I was diagnosed and put on meds, I have been able to get some of my strength back; however, I doubt if I'll be climbing anymore 14,000 foot mountains. I am walking for exercise again, riding a stationary bike, and using the rubber bands to help build up my upper body strength. In poly - the muscle weakness is reversal as long as you don't let the muscles atrophy. So it's important to move them and stretch them. That's why I took up yoga when I got my diagnosis and it helped tremendously.

 

I hope this helped. Please let us know how your appointment in July goes. I guess you've been having tons of tests for your new rheumatologist to evaluate. The initial diagnosis for the poly was the elevated CPK but the final diagnosis was through a muscle biopsy.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Janey and Sweet,

 

I'll keep you posted, and thanks so much. Hmm, the weakness sounds like what's going on, and with a nucleolar pattern ANA, it wouldn't surprise me to turn up along with the sclero. No, I won't even be climbing any small hills, forget the mountains for now! Either way, I started doing something called a "Tai Chi walk" around the house to help the leg muscles and glutes, and it's a slow-go on progress, but far better than giving up. Thanks again, and I'll be popping in as able.

 

Hugs to both of you,

Elehos

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Hi Elehos

 

I was diagnosed with polymyositis about four years ago. My first symptoms were weakness in my shoulders, legs and hands. I got to the stage that I could not get up out of a chair or sit up from a lying position by myself. I was in grade 10 at this stage. But I was put in hospital and was given a alot of medication (50mg prednisone daily and methotrexate), and now I am a lot better.

 

I will never be able to get full strength back, and I still have trouble with strength in my hands but things definately do get better. My rhem. says that you can't get back the muscle that you have lost, but I definately seemed to get some strength back, however that happened.

 

So there is definately hope.

 

Hope to hear back from you soon

 

Timo

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I feel for all of you that suffer with polymyositis along with the scleroderma, bad enough on its own. Elehos, Janey, Timo and anyone else who has this involvement, I wish you the strength to keep moving in whatever ways you can. It is heartening to hear how effective the treatments are on this illness.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Hi to everyone!

 

Thanks for your replies! Timo, I haven't had as much difficulty as you and Janey have, but after flares I do notice more (often permanent) weakness, and it may not even be the polymyositis, but I'll know more next month. Lupus, sclero, and the OA can do just as much to wipe the body out, and since lupus has been called the great imitator, here's hoping the list will end with those three diagnosis'es. My husband was looking at me funny the other day because I was yelling at my right leg to "get with the program!" It's amazing that you have to become a drill sgt. with your own body, but it's sure beats laying in bed waiting for it all to end and accomplishing nothing. Thanks again, and I'll be around!

 

Hugs to all of you,

 

Elehos

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