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Heavy Legs & Arms

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Posted 8/30/2013 12:36 AM (GMT 0)

Hi Everyone,

I am new to this site. I found it while I was researching my leg and arm pain and was impressed by the community of support and shared wisdom. So thank you in advance for reading and sharing your thoughts

I am 31 years old and after almost 5 years of testing, I was diagnosed with SLE March 2012.... and things have been getting increasingly difficult since my diagnosis.

My biggest challenge today are my arms and legs. My legs feel like cement bricks and it's hard to go up and down the stairs. My arms feel heavy and it's difficult to hug my 2 year old little girl.

I emailed my doctor and he wants to do more labs....what could it be?

Please share your thoughts and experiences. Not sure what to think at this point

-Doctor Mom

Posted 8/30/2013 3:47 AM (GMT 0)
My daughter (35 years old) has the same heaviness, especially in her arms. She can't believe how hard it is to climb stairs either. Presently, she is in the process of being diagnosed. Her first flair was 10 months ago, then May, June, July and August. The first reuhmatologist treated her for lupus, but wouldnt confirm the diagnosis. Shel just changed to my reuhmatologist and he is testing her like crazy! Results due next week.
Best of luck to you.
Posted 8/30/2013 6:20 AM (GMT 0)
When I was first diagnosed I was so fatigued all of the time that I couldn't raise my arms or climb stairs either.
I was put on anti-inflamatories and plaquenil. It took awhile but my arms gradually felt better. I still hurt to climb stairs and I must take them very slow and easy. I try to avoid all stairs if possible.

What kills me the most right now is inflammation in my toes. I can't stand my bedsheet to touch me. I have to stick my toes out from under the covers.
Posted 8/31/2013 1:27 PM (GMT 0)
Hi guys...so I've had the same heaviness in my arms and legs but my reuhmy tells me its my fibro. I tell her I don't thinks so but she insists it is. What should I do? Lately my joints have been so inflamed I had to go see my on-site nurse pract. to give me some prednisone because my hands and feet hurt so bad. My reuhmatologist took me off of them months ago because she says they aren't good for me but I hurt alot and working in a factory just adds to the pain.

HELP!! should I look for another doctor? I feel like I should go on disability but I'm not the kind of person to be home all day long!! It's getting harder and harder to just walk or stand or sit for ex amount of time...I could go on and on but not talking to different people in the day would be soooo boring but I know that my body won't be able to take it for much longer...UGH!! I hate Lupus!! I hate fibro!!! I just wanna be normal again!!

Sorry, I needed to vent...you all have a blessed day. Patty
Posted 8/31/2013 11:29 PM (GMT 0)
Are you having any swelling in your joints?
The lupus makes your joints swell along with the pain.
The fibro makes you just hurt.

I stopped working myself last year (along with my boss agreeing) since I was in constant pain. I'd like to went stir-crazy staying at home not working the first months. I found some hobbies that keep me entertained so I 'm not bored as much.

If the financial side of it worries you so much get some long term insurance to live off of later.
Posted 9/1/2013 11:20 PM (GMT 0)
Joy, yes my joints have been hurting so much lately...getting back on steroids has helps so much that I wonder if I shouldn't be back on them long term. I looked up the side effects and man I tell you what it scares me but the benefits out weight the risks.

How do I go about getting long term insurance? I do have long term disability at work. Is that what you are talking about?

Patty
Posted 9/2/2013 1:27 AM (GMT 0)
Long term insurance will help pay bills if you become too sick to work and are waiting to get better or applying for SSDI.

I get mine through a company called unum, but I think you can get it through aflac or met life.

It gives me enough to cover my bills.
Posted 9/2/2013 1:39 AM (GMT 0)
I had a Unum long term disability plan - it paid a monthly amount based on the specific policy I had purchased. In my case once they realized it was *really* long term and that my Drs were saying I'd never be able to work again, they offered a fix amount lump sum payoff. Before that they required so much paperwork each year that my Drs & I very all getting annoyed...so instead of having to medically treat the stress every year, I choose the lump sum payment. It was a bit less than if they'd continued to pay me monthly until 65 (I was under 50 at the time), but with judicious investment leveraging compound interest principles, I think it's okay. And it's certainly nice to not have the paperwork hassles. (Once we requested my file, and saw that they really do come to your neighborhood and watch you go about your business to see if you are lying or not. Weird feeling!)
Posted 9/2/2013 2:46 AM (GMT 0)
Lupus is often part of an overlapping connective tissue disease which can include a muscle disease like polymyositis or dermatomyositis.  There are many other possibilities but it could be that lupus alone is causing your problems.  More tests are needed to determine the cause of your weakness.

Is there any pattern to the weakness?  Which muscles? Symmetric or asymmetric?  Are there any other distinct symptoms?

When you see your doctor make sure you have written them out so you don't overlook anything. 

I have a disease called mixed connective tissue disease which includes lupus, polymyositis and scleroderma.  It can also involve other AI diseases.  Like lupus, it is treatable.

Hope you get those tests as soon as possible.  What type of doctor are you seeing? 

Bill

Posted 9/2/2013 2:52 AM (GMT 0)
Have any of you considered Lyme disease. The heavy arms and legs are a symptom of that also. Many people with lyme have been misdiagnosed with lupus and fibro and MS and many other things. I am just throwing it out there. I was just about to go on the Lyme board and saw the title "heavy arms and legs" it caught my eye. I have that symptom as well as many many other symptoms and have lyme.
Posted 9/2/2013 4:38 AM (GMT 0)
The doctor ran an ANA test on me and I have all of the symptoms of lupus.
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