View Full Version : Muscle pain not joints

08-11-2011, 05:53 AM
I know lupus affects everyone differently. Anybody else out there with almost exclusively muscle pain. If the swelling spreads far enough to reach my joints they begin to hurt but that doesnt seem to be where it starts. Also, what do you find to be common triggers for flare. Thanks

08-11-2011, 06:03 AM
Hi mawmaw I have fibromyalgia on top of SLE. The spasms can last a few hours or months. It's been years of this and now diagnosed. If I am under stress or lift heavy items it triggers it. The pain is exhausting I am learning to deal with it with extreme stretching 3 x a day and using light weights. I was on all kinds of nsaids and found cymbalta to be very helpful, so I am off those. Low amounts of vit D were discovered by my doc and my hoshimotos thyroiditis also causes muscle spasms. When I have sweats too much, which I have now, I drink mineral water to get magnesium and potassium to help with spasms. Talk to doc about the spasms and note when they happen. It's common for people with AI issues to have fibromyalgia.

08-11-2011, 06:58 AM
there is quite a few of us with fibro.

it may be worth checking out the possabilitiy.
my symptoms are very similar to what you describe.

08-11-2011, 07:44 AM
I always have issues with my muscles. My doctor has only truly addressed it once while I was flaring bad and said it was myositis, which is when your muscles get really weak. I have more muscles inflammation I think than joint pain also. Hope you figure yours out. Oh and my biggest cause of flares is not taking my meds right and stress.

08-11-2011, 08:34 AM
Lupus also affects my muscles more than my joints and there are blood tests the doctor can do to monitor lupus activity in the muscles. It's frustrating because the doctor always asks about joint pain and how long I am stiff, but it's my muscles that hurt.

08-11-2011, 09:32 AM
HI there (:
I have some joint problems, but my main pains and aches is really with my muscles. They've also gotten considerably weaker since i've gotten sick. My joints (knees) will hurt more when I stand and walk a lot, etc, but the pain starts at the muscles and gets slowly worse until my joints start to feel it, like you've said.
Most common trigger for a flare or bad day (since i haven't been sick long enough to distinguish flares), is being in the sun...but doing something. If I'm just sitting in the sun then i might not have that much of a problem, but like yesterday I went to a driving course and hit golf balls... the combination of doing something hard (since my arms are really weak and its painful to hold the golf club), and moving, plus the sun really made me sick. Basically just overexerting yourself, especially in the heat, sun, or both.

Good luck!

08-11-2011, 10:12 AM
I have tons of muscle pain but it is usually caused by my fibro. Saysusie and I were actually discussing this a while back. There are times that my fibro is actually worse then my Lupus and there are times that I can't tell one disease from another. There have been several studies where it was shown that people with Lupus and Fibro have more severe cases of each (please note that the last sentence is informational and there is no proof as of yet).

Having said all of that I also must tell you that it is not unheard of for Lupus to cause muscle pain. The Lupus foundation of America actually posted some information about muscle pain and Lupus. I will past the link below but first I will post and excerpt:

Muscle pain and muscle tenderness, especially during periods of increased disease activity (flare), occur in as many as 50 percent of those with lupus. The symptoms may have different causes, so it is important for your physician to determine the cause of your problems, since treatments are quite varied. Rheumatologists are the physicians who specialize in the joints, muscles, and bones.

Muscle aches and pain may be from symptoms that happen when your body is responding to some type of inflammation, from muscle atrophy (weakness), or from a true myositis.

Muscle Pain (http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnaffects.aspx?articleid=2322&zoneid=526)

Hope this helps

08-11-2011, 09:03 PM
Yes, muscle pain is my major complaint, too. I have frequent spasms and my calf muscles are constantly contracted. Yet, nothing shows up on tests, and the docs claim that there is nothing wrong with my muscles - go figure!
I hope that you get yours figured out and get some relief.

08-12-2011, 07:04 AM
Thanks everyone for your responses. I have not experienced any muscle spasms yet. My flares have consisted of odd tingling sensations, followed by rapid swelling and then muscle pain. Mostly occurs in hands & feet occasionally arms & legs.

08-13-2011, 02:06 AM
Just to throw another mix into the pot - I have hypocalcemia, low blood calcium. When the calcium levels in my blood drop too low; my muscles start tingling at first like they are asleep, then it gets worse by starting to hurt. If it goes further my muscles spasm and lock up. My hand will freeze in a totally weird position and my legs will either become stiff as a board or curl up behind me. Only a trip to the ER for a calcium IV will resolve this. Interestingly enough, I have not had to go for this reason since I started my lupus meds. GO FIGURE

08-13-2011, 04:46 AM
Thanks for asking the question. I have often wondered it my pain was more muscle or connective tissue related than joint in some areas. I guess the short answer is it might be. Thanks again for all the good information everybody!