Last question for today: Muscle Weakness

[scheetzie]

I also mentioned this to my rhuemy at my last appt - he made me do all kinds of things to test my strength, plus I had my CPK Levels checked, and they came back saying they were within normal range............

Somedays it takes all I have to use my arms - it's basically my upper arms...........and also the muscles above my knees - thigh muscles, I guess..........They just feel so heavy and weak - now this doesn't happen every single day, but pretty close to it.......

BTW - I forgot to mention that I also have Fibro for 18yrs.........

Anyone experience this or have any suggestions for me

Thanks everyone,
Donna

[aajmom]

Donna, during the flare-up I had (which I mentioned in response to your other post) I had awful muscle weakness! I couldn't move my arms or use my hands- it was way too painful! In addition to the CPK test my doctor ran a test looking for antibodies for myositis. My understanding is that myositis, being a muscle inflammation condition, can either be chronic or a one-time deal. Certainly I'm no expert on it- but it might be worth googling to see if you think any of your symptoms resemble the condition and then possibly talk to your doctor. Good luck to you!!!- Adriane

[steve201]

Donna
one of the symptoms of mine was extreme malase...or tiredness....exhaustion and heavy feeling...muscles hurt..etc...but my only question is can you get on AP...and get into some sort of physical therapy....

Steve

[scheetzie]

Thanks Adriane and Steve...........

OK - My doc does not agree with AP - I know I need to search out a new rheumy and soon !
Physical Therapy is a tough one - with our Insurance, I have to pay $40 up front every time I would go -

(Is Lucy (atleast I think that was her name) - she was a very beautiful woman and her husband was Italian - so you wonder how I remember that - I remember from the Christmas Cards two years ago - anyway, is she still on here - she is from my area, she lived in Bethlehem, PA & I'm from the Allentown, PA area - looking for a new doc is hard - anyone know of any in my area, or atleast not one that I have to get on a plane and fly to??

[Cubby]

If you are looking for an AP doctor in Pa, contact the Roadback.org. Or, call Cheryl Ferguson at 916-532-2142

When I first got sick, I had HORRIBLE fatigue and muscle weakeness. I used to say it was like I was WADING THRU MUD and was very very exhausting.

[jeffn]

I believe looking back that I had SD symptoms or was at least flirting with SD for many years before my SD went active. Advancing muscle weakness was one of the major things I noticed a couple of years before my SD symptoms arrived in force. Same as yours mostly upper legs and upper body. I noticed it at work at first I just could not move and lift what I used to. Where I really noticed it though was surfing. I noticed a couple of years before SD that I was not able to paddle out well. Now getting my fat ass out there was never effortless before but all of a sudden I just had no strength and I would go out for a bit and was dead tired. After the SD hit it was really bad and when I had GAVE it was even worse. At that point my upper legs were the most painful not just weak but painful. I referred to it as dead leg. The area just above my knees in particular. My weakness was constant I did not have any days where my strength was noticeably better.

So I think it is all part of the SD package. My strength has been coming back and at the gym this winter I have been able to increase my weights. So I am encouraged by that.

You may be speaking of Lucci perhaps. She was from Pa. I think. She tried AP but experienced side effects ( again I think) but she may well have a Rheumy in her area AP or not.

[steve201]

Mar 22, 2010 14:51:30 GMT -5 scheetzie said:

Thanks Adriane and Steve...........

OK - My doc does not agree with AP - I know I need to search out a new rheumy and soon !
Physical Therapy is a tough one - with our Insurance, I have to pay $40 up front every time I would go -

(Is Lucy (atleast I think that was her name) - she was a very beautiful woman and her husband was Italian - so you wonder how I remember that - I remember from the Christmas Cards two years ago - anyway, is she still on here - she is from my area, she lived in Bethlehem, PA & I'm from the Allentown, PA area - looking for a new doc is hard - anyone know of any in my area, or atleast not one that I have to get on a plane and fly to??

your thinking of Lucci and Micheal.....she visits very infrequently....
and yes she's from bethlehem pa.....I don't know how she's doing as of late...

Steve

[klw1960]

I cannot even get the lid off of a water bottle....and have the mucsle fatigue too

[jeffn]

Mar 24, 2010 12:50:36 GMT -5 klw1960 said:

I cannot even get the lid off of a water bottle....and have the mucsle fatigue too

Is that from hand/finger pain in addition to the weakness? I had a big problem with that.

[klw1960]

both I think....

[kathygirl]

WhenI wasdiagnosed with sclero I was diagnosed with polymyositis at the same time. Extreme mucle weakness and pain. I took high dose prednisone and methotrexate and it is gone now.

[scheetzie]

Ok, Would like to address two different things here:

Yes, I would personally be very interested in the AP Therapy - but I 'think' I know now why my docs are hesitating - I also have AUTOIMMUNE HEPATITIS, and they are afraid it's going to affect my liver more than it already is - but once again, am going to bring this up at my visit next Tuesday.............

My hand weakness and numbness: Many years ago, I had been tested a FEW times for Carpal Tunnel, and was always told it's been there, but not bad - well I got no results from my Nuerologist, think the guy was half asleep, and this is the doc that is always so helpful.........

Anyway, had a chiro appt, mentioned it to him, and the first thing he suggested and did the simple tapping test for was carpal tunnel, and bam he seems to hit the nail on the head, sorta speaking - so instead of going back to my nuero, that's why I contacted my family doc - I EVEN TOLD THIS TO MY RHUEMY - but these docs are starting to TICK ME OFF BIG TIME - they seem to think,"oh well, what is one more thing when you have all the crap going on that I do" - ARGHHHHHHHHHH

I do have a hand surgeon that I see for when I get really bad calcium deposits in my fingers - he's a sweetheart, so will just take it from what the family doc has to say..................

Now, the muscle weakness in upper arms and thighs above the knee is still there, comes and goes...........so we shall see...........

Thanks again,
Love,
Donna

[jeffn]

In regard to carpel tunnel I had a similar experience. My first symptom when things started to happen was what they thought was carpel tunnel. I went to an ortho guy for three months or so and and he tried various meds and did the nerve tests. In the end he said I was border line carpel tunnel and not a candidate for surgery. He suggested going back to my GP to "start over". Well this did lead to my DX so all in all it was a good thing but at the time I was not too pleased to realize I had wasted a few months. Early on after my Dx I did a lot of reading and the carpel tunnel like pain was very common and many had the surgery. For some it helped but my impression was for many it was fruitless. In the end I am glad my doc held off and did not jump at the operation. In my reading at the time I found that my pain involved more of my hand than carpel tunnel would effect. My little finger and ring finger were just as sore as the rest of my fingers. What finally did happen was that as either the mino kicked in or with the natural course of the disease (I'm betting the mino) the swelling in my hands and fingers went down and now my hands I believe are very close to normal. I still have some sensitivity to hot and the Raynauds is still there but pain is way down and function is way up. I would think that any med that reverses SD symptoms might have the same result in other folks ie the carpel tunnel like pain going away. Perhaps it is the swelling caused by SD pressing on the nerves that causes the pain.

[scheetzie]

Just a vent here for today:
So far today, my day has been horrible - pain, weakness - in both hands, and upper arms, and thigh area again.........

I wanted to go to Kohl's this morning, and was actually afraid to go - my husband was working, but, I went by myself, and noticed NOW I'm starting with the panic attacks not knowing if I can make it to the front door or back to my car............

Then I was already to call it quits, but kept on trucking along - I wasn't going to let the panic rule me, which btw, I've had panic disorder since my early 20's but has been under control fairly well with the help of Xanax..........Next stop was the pharmacy and before I left the parking lot, I called my husband (Don) to see how long his day was going to be, I really needed groceries and was all ready to go home, when I sat in my car talked myself into going and proceeded to the grocery store ~ I actually wasn't too bad in the store, had the cart to hold onto, I just got one of the 'bagger's to put the bags in my car and then soon after I got home, Don was on his way, so he carried everything in, and put it away for me...............

My neck and back are burning, just like you get when your muscles are all screwed up, but the weakness is really messing with my mind...............

Back home safe and sound and did accomplish what I set out to do..........Can't wait to see my Primary Care Doc on Tuesday - he is one that I can always count on to check into ANY new complaints I have - he doesn't push everything on the SD - he sends me for tests, etc. to make sure...............

So that's my Saturday vent - LOL

[sherion]

Wow, it seems you did a whole days worth of work!! So sorry that you are suffering because of it. I know when I grocery shop that I have trouble the next day with my arms in so much pain and weakness that I can barely use them.
When I go to my PCP, in hopes he will help me, he always tells me to see the Rheumy.
Rheumy then wants tests or blood and I have to go BACK to the PCP for the blood and referrals!!!!!!!! Don't see why the PCP can't just order these things himself and save me two trips!!!Good for you for having an on-the-ball doc!!

Sherion