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Posted 9/13/2009 6:07 PM (GMT 0)
I know we have discussed this before, I did a search but couldn't find it.

Do any of you have muscle pain in your thighs? Pain like you've ran 10 miles, it hurts to sit, stand, go up and down stairs. It hurts like this from time to time, I wonder if it's inflammation, I haven't been feeling well and have had a LOT of fatigue.

I also had something weird happen to my eyes while driving home on Friday, it's very hard to describe, almost like you're going to pass out but not lightheaded just diminishing vision???? confused

Your thoughts are welcome!
Posted 9/13/2009 6:10 PM (GMT 0)
Hey Stacie...Sorry you are feeling bah! I had a question about the vision...Is it like when you look in the sun and have black spots? Have you had any bright colors appear in spinning motions?
Posted 9/13/2009 6:22 PM (GMT 0)
Hey Amy,

I don't think I had bright colors, maybe black spots or spinning but mainly I thought I would lose my vision. You know right before you pass out your vision starts going well it was like that except I didn't feel like I would pass out. It was weird, I thought I was going to have to pull off the side of the road, so I opened my eyes really wide and called my hubby. Luckily I was only about a mile or so from home. It happened so quick, it did it twice within seconds and stopped and it hasn't happened again????

Have you had a similar experience?
Posted 9/13/2009 6:31 PM (GMT 0)
Hi Stacie, Sorry you are hurting. I get that type of pain in my thighs and legs. It is deep
burning achiness that make your legs feel like cement, along with big time fatigue. I
attribute that to my fibromyalgia. I started taking Savella for it and it kicked in after week
seven, still feeling tired but my muscle achiness isn't as bad.

The only time I have any vision thing going on is during a full blown migraine.
Hope you get some answers and feel better soon!

Robin
Posted 9/13/2009 7:38 PM (GMT 0)
Yes Stacie! I have had very simular experience. It hits me hard when I am in a lupus flair, actually had one this morning. It is called a Aura Migraine. I don't know if yours are simular but the website I have included fits my symptoms to a t! They are very scary...I am going to mention it to my rhuemy in two weeks. Mine start out with the vision problems, then start to get tingeling in my hands, this will last about 20-45 mintues. After that a horrible headache followed my vomiting! I see you take tramadol, I will take 2 of those when the vision changes along with a Zofran, sometimes it will work and cut the migraine out and sometimes it does nothing. I really hope you aren't starting to have migraines. They are horrible!

http://www.mayoclinic.com/health/migraine-with-aura/DS00908

Could your leg pain maybe be a potassium problem? When I had high potassuim, my toes would curl up and no matter what i do, I can't get them to straiten out. It is extremly painful. I hope you start to feel better soon! Sorry you are having problems!

 

Posted 9/13/2009 8:55 PM (GMT 0)
I ache all over my body- I just discovered my Vit D level is 8 and it should be 50 ng/ml. One of the side effects of Vit D deficiency is muscle aches and pains. My doctor started me on 50,000 iu/once a week of prescription Vit D. Purity is running a paid programming ad on radio today going through all the benefits of Vit D and of course they sell a Vit D 5000 ius. (The stores just have tabs up to 1000 ius- not enough). Or you can get 20 min of sun every day. I just started the regimen, so I don't have any results yet- but my twitches and restless leg funny feelings seem to be gone. This condition is called "Chronic Substrate starvation deficiency". Here is what I am hoping for with Vit D and we'll see if it pans out: Less pain, less fatigue, better mental attitude, more activity (actually feel like living again instead of "what's the use?" attitude) and some weight loss. (Folic acid supplements- 1 MG- also really helped all my night time leg cramps). Research into Vit D is just getting started. It is my rheumatologist that is giving me the Folic Acid and Vit D, my orthopedic surgeon and internist don't yet understand any of this. It seems like you would want a neurologist, doesn't it? I have NO IDEA if they would be helpful.
Posted 9/13/2009 9:10 PM (GMT 0)
Thank you Robin & Amy,

Robin, I don't have Fibro ( I don't think ) my rheumy suspected it at first but has ruled it out. I think I've had the pain you described, it feels like it's down to the bone, this pain I'm having now feels like my leg muscles have been overworked, like I've been running or something. It kills me to sit and get up off the toilet!!!!

Amy, thank you for the link. I didn't have a migraine on this day, I have them often and never experienced an aura. I will check out the website, maybe you can have the aura with no headache??? My toes have been curling up too, for a couple of months now. Guess I will be getting some banana's at the store!
Posted 9/13/2009 9:20 PM (GMT 0)
Thank you Meek,

My Vit D was low at one time and my rheumy prescribed 50,000 IU of Vit D once a week, I took it for several months. My rheumy checked my vit d level back in June and it was fine, maybe it's dropped back down. I see my PCP in a couple of weeks, I will see if she will check it for me.

I also take 4mg of folic acid daily.
Posted 9/14/2009 6:39 PM (GMT 0)
Hey Stacie, I get those aura migraines too.  They're called Ocular Migraines because there is no pain with them, just the vision loss stuff.  Mine are benign in origin and are just plain annoying!  My neurologist told me that if they last more than an hour to go to the ER, but otherwise I just have to live with it. 

 

How is the leg pain today?  Sending prayers your way!

Posted 9/14/2009 9:52 PM (GMT 0)
Stacie,

Lupus can cause infllammation in your muscles producing weakness and pain. 

Have you been tested recently for SED rate or CPK?  SED indicates if an inflammatory process is active in your body and CPK is a measure of muscle breakdown. CPK is normally given for different neuro muscular diseases like polymyositis and dermatomyositis.  Some patients, like me, have an overlapping connective tissue disease and it often includes lupus.  I have MCTD which is lupus, scleroderma and polymyositis.

Is the pain and weakness symmetrical?  Thighs only?  How about your distal muscles (those away from your trunk)?   Any problems raising your arms? 

If it continues you should see your doctor but be very specific what muscles and how they are affecting you functionally.

Hope you can get some answers.

Bill

Posted 9/14/2009 11:00 PM (GMT 0)
Thanks Ginny & Bill -

Ginny, I called my eye doctor today and tried to explain to them what happened. He said if it happened in both eyes it's something in my brain and to schedule an appt with my PCP which I did, tomorrow at 3:30. He said if it was only one eye he would examine me but I couldn't say for sure it was one or both, I think it was both. I then called my rheumy and they suggested I see a neurologist so I will call and schedule that appt too.

Bill, my last SED rate was elevated, it usually is. This has happened a couple of times but of course not at the time of my appts and each time she has checked my CPK it's been normal. I will tell my PCP tomorrow and see if she will check it as my legs still hurt. It's both thighs, on the top, I don't notice it anywhere else, my arms seem to be fine.

Thanks again
Posted 9/15/2009 2:08 AM (GMT 0)
Stacie,

One thing to keep in mind is that cpk only measures muscle breakdown.  You can have an active inflammatory process even though your cpk is low or normal.  Many patients with myositis experience that and some doctors will insist everything is OK even though symptoms say otherwise.

Hope you can get an answer but it does not sound like poly or dermatomyositis based on you descriptions.

Bill

Posted 9/16/2009 1:52 AM (GMT 0)
Bill,

Thank you! I guess it's just inflammation, it just amazes me what this disease can do to us! I went to my PCP today, she didn't have ANYTHING to say about the leg pain. She pretty much blew off all the issues I told her about (vision prob, leg pain, excessive sweating, etc). She was (again) more interested in how I was dx with Lupus, what symptoms I had and if I lost any weight??? mad I think from now on when I have problems other than a cold I will see my rheumy about it. I really wanted to ask her how she would treat my lupus if I were her patient?? If she ever does this again I may just get the nerve up to ask that question!

Sorry for the vent, I'm just mad that I wasted 2 hours of my time and $25!!!! I will call my rheumy tomorrow and let them know what the PCP said and see what SHE wants me to do.

Thanks again everyone, if it weren't for all of you I would go nuts!!! yeah
Posted 9/16/2009 3:02 AM (GMT 0)

Hey Stacie- sure understand your frustration with the pcp.  Let us know what your rheumy says.  I noticed you have 50K Vit D listed in your signature.  I'm an odd duck, but I have increased muscle pain with Vit D supplementation, especially in that range - kicks up a big flare.  Just thought I'd mention it.  When you get re-checked on your D level, ask for a 1,25 level along with the 25-OH.  If it's elevated, there could be a connection.

Lucy

Posted 9/17/2009 1:46 AM (GMT 0)
Hi Lucy,

I haven't taken my Vit D in a couple of months and the last time she checked my levels in June it was better than before. Thanks for the heads up, if I have to go back on it I will remember what you suggested :-)
Posted 9/18/2009 6:45 PM (GMT 0)
Hey Stacie, just checking to see if you are feeling any better???
Posted 9/18/2009 11:20 PM (GMT 0)
Thanks Amy, my legs are feeling better, finally! My eyes are doing fine, doctor said if it does it again to call them. Tough week at work, looking forward to doing nothing this weekend and maybe getting to sleep in tomorrow morning yeah I guess I'm in a flare, just haven't felt like myself in a while and been battling fatigue and just generally feeling like cr*p!

How are you feeling? I sure hope you are feeling better, I know you've had a tough time lately! (((hugs)))
Posted 9/19/2009 1:08 PM (GMT 0)
I am so glad your legs are feeling better! I hope you do take the weekend and enjoy it 100 percent!!! I understand complety about not feeling like yourself, I am in the same boat. Other than fatigue,mailase, headache, I am okay ( I think...lol)
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