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Are you experiencing the same stuff?


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#1 Lucy H

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Posted 09 December 2009 - 11:31 AM

Hi. This posting thing feels a little strange, like I'm invading your personal space with my problems, but after reading so many postings I can see how it does help for people to connect with others who are experiencing the same stuff. I am not sure of what I am searching for. I guess just hearing from someone who is experiencing similar things would be a comfort.

I have been sick for about a year but in the last 2 months my symptoms have really progressed. I am seeing a new rheumatologist at a major clinic in February. My old doctor said lets wait and hope you don't progress.

I was told that I probably have CREST and I believe I have early polymyositis. I'll know for sure soon enough. My ANA is very high but other blood is okay. Anyway, I wanted to know if any of you are experiencing what I am. Sometimes I think I'm looney. My upper arms can't even hold something as light as a phone and the next day I can carry grocery bags. Then it switches to thigh weakness. Some nights stairs are a killer, other times I'm fine.

My Raynaud's is pretty bad now (even feet). I have what I believe to be a calcinosis on my finger (small hard white bump) and I have a strange pinkish blotch on each thigh. What is that? Do any of you have the same kind of stuff going on? What do you have, how are you doing and how long has this been going on?

I am not a kid, I'm 49, but I have to say that I think of myself as young. I feel so terrible when I read about some of you in your 20s & 30s being ill. I know that in the scheme of things I am very lucky and this certainly isn't a misery likes company kind of thing. I am not miserable, just looking for someone who is going through the same kind of stuff.

#2 Sharon T

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Posted 09 December 2009 - 12:28 PM

Hi, Lucy -

I've had the same on-again, off-again muscle weakness, which at the time I attributed to the steroids I was taking to control inflammation. However, after reading other posts and some other information, I think the muscle weakness is part of scleroderma. I have no idea why it comes and goes. The only other side effect that does that for me is aching legs, which I have sometimes and not others. Nobody ever said having sclero wasn't a "trip"!
Sharon T.

#3 Sweet

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Posted 09 December 2009 - 12:34 PM

Hi Lucy,

I'm so glad you posted. You'll soon find out, that the people here are great to turn to for support, info, or just plan venting.

I'm 50 and I've had CREST for 9 years. You are NOT going loony. I can feel fairly OK and within 15 minutes (not the day that you mentioned) go to feeling bad, or vice a versa. The symptoms rotate throughout my body. Like you, sometimes something as simple as holding a paperback book is too much. The next day I can carry a 1/2 case of beer. LOL I find that as soon as something hits me, if I can rest that is the best for warding off a longer spell.

I do hope you find answers with your new Doctor. Please keep us posted.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 enjoytheride

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Posted 09 December 2009 - 05:21 PM

Well- this is a small world. I was having the same problem and was wondering about it too. Sometimes I will feel pretty spritely for a day or two then within a few minutes just have to find some place to sit right now. It's not like short of breath but just "out of fuel" sort of thing. As long as I rest, I feel ok.

Why is so comforting to be strange as long as others are just as strange with you? :)

#5 nhguy

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Posted 10 December 2009 - 12:35 AM

Hi Lucy
You are definitely not alone,in fact your symptoms are just like mine. I have the Crest form of Scleroderma too.I can feel good one day or one morning and then the next ouch,just junk. Hang in there.

Pat :flowers:

#6 CarriePan

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Posted 10 December 2009 - 05:07 AM

Count me in! All of the above. I can wake up and able to hold a toothbrush and move on with my day and another day, ughh I sleep the day away :emoticon-insomnia: It's nice to be around others who think you aren't nuts!
Feel good!!
Carrie
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#7 Stacey

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Posted 10 December 2009 - 06:17 PM

Hi Lucy! I'm sorry to hear about all your troubles. I have Polymyositis. Before I was diagnosed the first thing that happened was not being able to lift my hands above my head. Unfortunately my original crash happened rather fast. When you go to the doctor in February make sure they check your CPK level. Normal is and where between 200. When I was diagnosed I was at 7600. So hopefully your numbers stay good :) I also think the Scleroderma causes weakness too. My Polymyositis is in remission but sometimes I get so tired and know that it isn't the Polymysoitis. Do you live where it's cold? If so, that might be a triger to your tiredness.

Hope you get to feeling better!

#8 Sharon T

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Posted 11 December 2009 - 08:04 AM

Hi, Stacey

In your last post you mentioned that cold might be a trigger for tiredness? I have definitely noticed increased tiredness over the last week or so, and we've been having a cold snap here in Southern California. Is this tiredness related to cold weather something others have noticed as well? I'm always looking for explanations to changes in the way I feel - I.e., is this another symptom that I need to worry about or just another weird side effect of a med or sclero!
Sharon T.

#9 Lucy H

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Posted 12 December 2009 - 05:25 AM

Thanks everyone who answered my post. It does help so much to hear from others. I live in New England and it is cold which definetely aggravates my Raynaud's. I was unaware that it would exacerbate the weakness in my muscles until Stacey mentioned it. That actually makes me feel relieved because it is a more palatable explaination vs. the notion that my disease may be progressing. Thanks. Does anyone have the pinkish blotches that I mentioned? I will eventually ask my doctor, but am curious if anyone out there knows what that is?
Lucy