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Muscle Weakness Update


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#1 smac0719

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Posted 16 July 2008 - 11:41 AM

Well I saw my rheumatologist today and he suspects myositis. He tested my muscle strength (pushed against my arms and legs, had me sit in a chair with my hands on my legs to see how well I could get up, watched me walk normally, on my tip toes and heels). I have quite a bit of weakness. He ordered the muscle enzyme blood tests, which I'll do in the morning and he will call me with the results as soon as he gets them. He mentioned prednisone so I think that will be his first treatment if the tests are positive. I have a really good rheumatologist. I took notes from the previous posts (just in case), but didn't even need them. He was on the same thought pattern as most of you.

This sudden weakness really scared me and led me to think about the possibility of being disabled for the first time in a long time. Up until now, I have been able to work without too much problem. This disease and all it's sub-diseases have been manageable up to now.
I had to learn to listen to my body, rest more and realize that I can't necessarily do things when I want to do them. However, I've never been at a point where I couldn't get myself around, or had to be so dependent on others (that's hard for me).

Thank you guys sooooo much for your support and shared info. It is truly a blessing to have a network of friends who know what you're going through, don't know but can truly empathize and most of all just support you. You all are the best!!!!
I may have Scleroderma, but Scleroderma doesn't have me!

#2 Snowbird

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Posted 16 July 2008 - 01:26 PM

Well Smac0719

It's good that he's doing the test for muscle inflammation and it sounds like he is a good doctor, I'm glad for you for that. Perhaps if he can isolate the problem just a little bit (although I know things can be so entwined with this disease), then maybe he would be able to give you a medication that will help keep you more mobile than you feel just now? Let us know how your tests turn out. Take care for now.
Sending good wishes your way!

#3 Nina

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Posted 16 July 2008 - 03:15 PM

Smac ~ it really does sound like you've found a "good" doctor. Even though I have begun to think they truly don't exist. Thanks for letting us know, we must always believe they are out there.
Hopefully, you can continue to manage. I think you have learned the trick for the most part ~ know your body, LISTEN to your body and REST when you need it. That was most definitely the hardest part (and still is) for me. I'm a little hard headed :rolleyes:
I can't get my smilies to work!!!
Keep the faith Smac ~ it sounds like you are in good hands.
Much love,
Nina

#4 janey

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Posted 16 July 2008 - 05:42 PM

Smac,
Definitely sounds like your rheumatologist is figuring things out. My rheumatologist did the same muscle testing and does it on every visit. He said that people with polymyositis make him feel strong. laugh.gif

Please discuss the prednisone issue with your rheumatologist. I'm certainly no doctor, but from my research I know that prednisone is the first line treatment for polymyositis. However, when a person also has scleroderma - it's not always the best option. Here's some information you might want to read and ask you doctor about.

Glucocorticoids, Steroids (Prednisone)

My rheumatologist refuses to use high dose prednisone. The highest he has ever prescribed is 10 mg and that was short term. I was on 5 mg for 3 years and now am down to 2.5. Right after diagnosis he started me on methotrexate and 10 mg/day of prednisone. That stopped the progression of the diseases and even improved my symptoms and bloodwork. So you might look at your options and discuss them with your doctor.

TReatments for PM.

Please let us know the results of your bloodwork.

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)

#5 luvbnmom3

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Posted 17 July 2008 - 02:03 AM

That's great that your doctor is being thorough & treating you...it is good to have answers! I am anxiously awaiting an appointment with my rheumatologist as well, I hope he is as thorough!

#6 smac0719

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Posted 17 July 2008 - 06:00 AM

I am concerned about being on prednisone. My Sclero specialist in SC has said he did not want me on it unless absolutely necessary. My local rheumatologist said he will contact my Sclero Specialist before he prescribes something if it is PM. I also gain no less than 5-10 pounds when I'm on prednisone (previously prescribed for asthma and pulmonary problems). However, I would much rather have some relief than to worry about the weight right now. The primary care physician I had a couple of years ago prescribed it while I was trying to be diagnosed just to give me some relief from the pain and discomfort I was in. I did work, but that was just short term.

I had the blood work today and it wasn't painful at all. It only took one stick. Woohoo!! I am usually a hard stick as my veins have never been "visible" and having the tightness doesn't help at all. I often have 5-6 sticks with no luck. I used to go by the "3 sticks you're out rule" :) , but with sclero I know it's important to get the work done so I bite the bullet.

My 40th birthday is Saturday and it's a little bittersweet. I know I am truly blessed to see another year, but I've had to cancel some plans I scheduled a while ago due to this latest issue. I think I'll turn it around to a "pamper me" day. Now that I think about it, breakfast in bed sounds pretty good! :lol: Maybe I'll get my mom to rent some of the movies I've been wanting to see for a while. I think I see a plan formulating.
I may have Scleroderma, but Scleroderma doesn't have me!

#7 debonair susie

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Posted 17 July 2008 - 06:07 AM

Hi smac,

I'm glad you have a dr you feel comfortable with. When dealing withas many health issues as we do, it's reassuring to know the dr has a good working knowledge of what we deal with.

I wasn't aware of the warnings about corticosteroids, etc until Shelley and now Janey, posted the link to the information.

I appreciate the information and the fact that we all have freedom of choice, when it comes to what we take and not take.

I hope that whatever you decide to do, in regard to the PM...that the weakness you're experiencing... ebbs.

Hugs,

Susie
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#8 smac0719

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Posted 23 July 2008 - 10:43 AM

Well, I had my follow-up appointment today and all my labs were normal. My rhuemo didn't know what to make of the sudden muscle weakness, but said maybe I had a temporary flare-up or my body was attacked by some sort of virus. I will go back to see him in a month.

I went to the grocery store today to see if I could walk around and push the buggy without becoming exhausted. The trip was pretty much uneventful and I am able to type without much discomfort as well. My shoulders are sore when reaching, but it's minimal compared to last week. I''ll take that over the weakness and fatigue any day!
I may have Scleroderma, but Scleroderma doesn't have me!

#9 Sweet

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Posted 23 July 2008 - 11:24 AM

Hi Smac,

Really glad you are feeling a bit better!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#10 smac0719

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Posted 23 July 2008 - 03:26 PM

Thanks Sweet!!! :)
I may have Scleroderma, but Scleroderma doesn't have me!

#11 Donna V

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Posted 24 July 2008 - 12:27 PM

Smac,

I understand your concern about being on prednisone, but I tend to think the advantages often outweigh the disadvantages. You're pretty funny, by the way - "3 sticks you're out"? (Been there by the way - I almost walked out of a colonoscopy prep because 4 medical personnel, including the anesthesiologist, had already taken 45 minutes hunting for a good vein and it wasn't until I told them I was leaving that they found one.)

Anyway, have a wonderful birthday!
Donna

#12 Shelley Ensz

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Posted 24 July 2008 - 12:44 PM

Here is our standard warning about prednisone again, just in case anyone has missed it (we try to include this in every thread that discusses prednisone, so please bear with us if you've heard this before) --

Corticosteroids strongly increase the short-term risk of developing scleroderma renal crisis! It also causes a 70 percent increased risk of developing pneumonia. It is crucial to avoid corticosteroids in patients with systemic scleroderma.

Glucocorticoids, Steroids (Prednisone) Warnings for Scleroderma


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#13 Snowbird

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Posted 24 July 2008 - 12:49 PM

Hey Smac

Glad to hear you're somewhat better now and that the labs turned out better than expected afterall. :)
Sending good wishes your way!

#14 smac0719

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Posted 24 July 2008 - 12:52 PM

Thanks Donna. I've avoided the prednisone this go around. Hopefully I won't experience that level of weakness again.

I think I've found a new phlebotomist who was able to get my one "old faithful" vein on the first stick. It has been used and abused over the years and if it ever gets too scarred up for use I'm in trouble. I told her when I find someone who can find my vein I tend to display stalker tendencies. :lol: She got a good laugh out of it, but I was somewhat serious. I went to the same phlebotomist for 2 years because she could find that vein within 2 sticks. She moved to NY and I tried to move too!
I may have Scleroderma, but Scleroderma doesn't have me!

#15 Purr

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Posted 24 July 2008 - 12:55 PM

Shelly,

I tried to read the information, but got a strange page. Since the warning is against prednisone, is something recommended to take its place?

Christy
Love makes the world go around!