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Muscle Weakness


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#1 Clementine

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Posted 12 August 2007 - 09:08 AM

Hello,
I have been feeling so weak lately. Just from changing clothes or something minor, I am really weak and have to sit down to recuperate. It is not shortness of breath but more like extreme weakness and fatigue. I get a CBC and liver panel test every two months and things are normal, although my red blood count was slightly lower than normal and my white blood count is borderline low. Is there another blood test I should be getting to explain the weakness? It is really a bother.
Thanks,
Jennifer

#2 janey

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Posted 12 August 2007 - 11:04 AM

Jennifer,
Where specifically is the weakness? Do your arms and shoulders get tired when you wash your hair or get dressed? Are you having problems getting up from the couch or chairs or going up stairs? If these are some of the weaknesses you feel, then you might suggest getting your CK (or CPK) tested. That's a bloodtest for muscle enzymes. If high (over 200) it could indicate muscle inflammation and possibly a myositis.

Regardless, you should bring this new symptom up to your doctor.

Big Hugs Sweetie,
Janey Willis
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#3 Kamlesh

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Posted 12 August 2007 - 11:19 AM

Hi Jennifer,

Sorry to hear about muscle weakness and pain. Have you checked your medications for side effects? I do have muscle pain and joint pain. I believe it is from medications such as Cellcept and Vytorin. I have accepted to live under these conditions and when pain is too much I take couple of tablets of over the counter medication containing NSAID.

I hope you feel better soon
Kind regards,

Kamlesh


#4 peanut

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Posted 12 August 2007 - 01:16 PM

Jen,
I'm sorry to hear you're not well. My arms get tired from folding laundry and showers are exhausting. And shopping? Forget it. It's 2-3 stores then home. It's like the muscles atrophy faster than normal? I dunno. Regardless, I hope rest and love from your puppies & hubby make you feel better.

peanut

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my HMO makes me wear a helmet...

#5 Clementine

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Posted 12 August 2007 - 02:11 PM

Thanks Janey and Kamlesh. It is more of a tired feeling I get from doing something as simple as grabbing a drink from the fridge. It's been noticable for a few days. There is no pain though, just muscle fatigue. It could very well be Cellcept but I've been on it for two years now so you'd think it would have happened by now.

Thanks!
Jen

#6 WestCoast1

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Posted 12 August 2007 - 04:09 PM

Hey there Jen,
You asked if there were any other tests you could have done for fatigue. I was thinking that a thyroid and diabetes test could be done to rule those things out. Have you been tested lately for anemia...I guess you have if they have your WBC and RBC counts, but anemia could also play a part in fatigue.

Hugs &
*WestCoast*

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#7 Rachelle

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Posted 12 August 2007 - 05:54 PM

again, I have not been diagnosed with Sclero, but back in Feb. I had strep and took the meds and was fine for about a week and a half and then I had a solid 7 days where just getting up and taking a shower exhausted me to the point that I had to lay back down. I have long hair and brushing it out was exhausting. I missed that whole week of classes and there was no way I could attend them. I had no fever or any other symptom besides complete exhaustion and muscle spasms in my legs. I had no appetite whatsoever, but did drink plenty of fluids. My doctor said it was a virus and I had him do a CBC and it came back fine.

#8 Sweet

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Posted 13 August 2007 - 04:19 PM

Hey Sweet Jen,

I'm so sorry you are having this horrible fatigue right now. I'm just coming out of a 2 week bout of it myself. I can never figure out what causes it, but it does pass over time if I make sure I'm resting during it's duration. If you aren't getting better in a few days you should mention it to your doctor though. He/she may choose to do a bit of blood work. Janey's idea of a CPK would be great.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Clementine

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Posted 15 August 2007 - 10:17 AM

Hi everyone and Sweet Sweet :)
You know, come to think of it, I have had the CPK test a while back when I complained of fatigue and it was normal. My Dr probably thinks I am making things up...LOL. I have read a lot on fatigue lately and it can just be from interstitial lung disease. Would my CPK test still be normal if that is what is causing the fatigue?
I just want the way I feel to be warranted, for some reason.
xo
Jen

#10 Sweet

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Posted 16 August 2007 - 06:27 AM

Hi Jen,

I'm not positive, but I think if the fatigue was coming from your lung problem your CPK would still be normal.

Are you getting any energy back?
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#11 barefut

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Posted 16 August 2007 - 07:17 AM

Hi Jen,

Sorry you are feeling so wiped out. I get the same muscle fatigue you describe. I feel like I shouldn't complain sometimes because I am overweight (and out of shape!) but when someone of your size complains of the same feeling, I feel vindicated.

I'm having an exhausting day too. Gonna have to put this one down in the books as a non productive day!

Join me on the couch with blankie and remote or a good book.....

Hope you have more energy tomorrow.

Love,
Barefut

PS did you take your "B's" I just took a B complex with breakfast like a good girl.

#12 Clementine

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Posted 16 August 2007 - 07:56 AM

Sweet,
Yea, I don't think I have official muscle weakness, like Janey and the others. I think mine is from the lungs too. My rheumatologist acted like he didn't know why I had such fatigue when my CPK came back 47.
Is there nothing I can do about it if it's from the lungs? All I have to say is I am so glad I am not working, although the money sure would help.

I am also dealing with an infected tooth from get this, November 2005. I just got back from the dentist and this root canal and crown were done back then and it has still not healed. I have to see an endodontist now.

No big deal, take it as it comes.
Love,
Jen

#13 Sweet

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Posted 16 August 2007 - 10:10 AM

Jen,

You poor thing. As far as the fatigue goes, rest, take vitamins, get "some" exercise, perhaps eat more protein.

Your dental problem is a nightmare!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#14 CraigR

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Posted 16 August 2007 - 10:59 AM

I like to periodically have a Sed Rate (Erythocyte Sedimentation Rate) test done. It is a non-specific test for inflammation. You can definitely feel fatigued if it's above normal, and inflammation is a big issue with Sclero.

I've joked with my rheumatologist that I can pretty-well guess my sed rate by how I feel!

Craig

#15 janey

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Posted 16 August 2007 - 12:28 PM

Hey Darlin'
You're not going to want to hear this, but here goes: I know that you hesitate to wear your oxygen unless it's absolutely necessary. Well, maybe that needs to change! :rolleyes:

I find that wearing my oxygen really helps to eliminate the fatigue (of all types). With us living a mile high, we really hurt from the lack of oxygen so we need that supplemental. I have a small bottle and a tiny backpack that the bottle fits into. When I'm doing chores around the house (laundry, unloading the dishwasher, etc.), I wear it. It really, really helps! Without it, I get worn out - especially loading and unloading the washer and dryer. That makes my whole body hurt. With O2 - no problem.

When I have a bunch of errands to run, I tuck that cannula up my shirt, throw on my backpack and away I go. I have found that people are so nice to those of us with oxygen so I get really good service and lots of assistance without having to ask. :)

So please try using your oxygen more. I think you'll find that it really does make a difference.

Big Hugs to you Sweetie,
Janey Willis
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#16 Clementine

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Posted 16 August 2007 - 01:57 PM

Janey,
I know...I told my husband what you said and he says "so you'll listen to a stranger but you won't listen to me" and I said "Janey is NO stranger!"...ha!
It's funny how I feel like you all are my best friends.

I appreciate your advice. I need to hear it from those who know. I just hate it. It cramps my style. We didn't realize New Mexico was such a high altitude. Santa Fe is really high!

Thanks,
Jennifer

#17 Shelley Ensz

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Posted 16 August 2007 - 02:31 PM

Hi Jennifer,

I'd just like to add that oxygen is something that should be used according to doctor's prescription. For example, if they say you should be using it at 3 litres for 18 hours a day (or whatever) and at night; or during activity; or whatever, then that is exactly what you should be doing (at a minimum).

The oxygen isn't actually intended to make you "feel" any better or reduce shortness of breath or fatigue, although those things are definitely a plus! What it really does is reduce the long-term load on your heart and thus help to forestall heart problems caused by the perennial lack of oxygen. My husband's pulmonary doctor said that oxygen users who use their oxygen as prescribed live about 10 years longer than those who don't.

So, ideally, you'd be wearing it exactly as prescribed (or maybe even wearing it more often than that, if it makes you feel better, but not at a higher liter flow than prescribed).

My husband, Gene (who is ISN Vice President) is on 5 liters during activity and 2-3 liters at rest (like sitting or sleeping). He uses it 24 hours a day and has never, ever gone below his doctor's recommendation. People are amazed at how much he can do despite being on oxygen (he even worked full time as a courier driver the first 18 months he was on it!) -- and I really believe it is because he never tries to slide by without it and he always takes his other medications on time.

He also works part-time as a restaurant greeter, which includes busing some dishes. People are always really nice to him, but they always have been, because he is nice to them. So he doesn't notice any "special treatment" because of the oxygen. Many people don't even realize he's on it because he uses Oxyview glasses so he doesn't have a very visible canula.

Anyway, I'd endorse what Janey says (and your altitude is a huge issue!) and encourage you to find the REAL beauty in being around a lot longer to enjoy many more years with your husband...and puppy! Going to a pulmonary support group, where nearly everyone is on oxygen, also helps to normalize the experience and realize what a natural part of life oxygen is for very many people. There, you will probably feel like an interloper, if you don't wear your tank!
Warm Hugs,

Shelley Ensz
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#18 Clementine

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Posted 16 August 2007 - 04:40 PM

Thank you Shelley :). I used to be really good about wearing it, but once the newness wore off, I got used to going without it.

I think that's awesome that Gene has been so good. He will be my example.
Thank you Gene!

xo,
Jen

#19 jaateach

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Posted 17 August 2007 - 02:38 PM

Jennifer,

Check my recent post about mitochondrial disease. My muscle weakness sounds similar to yours. My rheumatologist did what is called an exercise test. They take blood with your body at rest. Then you do a six minute walk, as vigerous as you can, then they take more blood. They measure the increase of sevefral things, one of which is lactic acid. This disease causes serious muscle weakness. I am a long distance runner and when this hit I was not able to walk up a flight of stairs. Ask for an exercise test. Hope this helps. Joe