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Re: Sfn and ?
Mar 2, 2013
[QUOTE=ladybud;5140563]I have lupus, RA and myositis. My thighs ache all the time, especially at night. I think there could be muscle inflammation contributing to it even when my CPK is normal. I also know it gets way worse when my Vit D level is low. I would ask Dr to check your Vit D level and supplement generously if low. I also take Vit B12 and folic acid for neuropathy, and it is much better. I wasn't low on those levels, but supplementing them seems to help. An antiinflammatory like a NSAID may help your thigh pain as well. It is worth a try. Anything that helps even a little is worth it! Low iron can cause leg pain and restless leg syndrome, so checking the iron and ferritin levels may be helpful too, supplementing if on low side.[/QUOTE]

Hi ladybug, thank you for replying to my post. you sound like me, I also have myositis, uctd with features of scleroderma, Hashimotos and also a very rare disease hashimotos encephalitis. So it is very hard for my doctors to sort out my symptoms of what is coming from what disease. It looks like you may have the same problem. I take Vit D on a bi weekly basis of 50,000 I use to take it daily then once a week now down to every other week because like you said I have worst leg pain when my vit d is low. I am now being tested for vit b12 and I believe with your advice I will supplement over the counter even if it comes out ok along withthe folic acid. How do you tell ladybug between the pain from the myositis and the neuropathy pain? My legs always hurted too for years climbing stairs, going up curbs, but his is a burning sensation. Again thank you so much for answering my post it really helps me. thank you susie
Re: Sfn and ?
Mar 3, 2013
[QUOTE=LasVegasgirl;5141026]Hi Susie,

The facet disease is basically arthritis in your spine, says my pain specialist. He wants to do the back injections but don't think I will go that route.

May I ask what type of pain you are having in your feet? The location of the pain?

My thigh pain is all above the knee. Which I think a good part of it is the facet issue but it also feels like nerve issues because if cold air hits my legs, it puts me through the roof.

My foot pain is not like the usual neuropathy pain I read here. My toes are not affected and I don't have tingling or numbness. Just severe pain on the sides and arches with a lot of cramping. The main med that helps the most for my feet is neurotin.

What does help with the burning, that I learned here, is R-alpha Lipoic acid. It takes about 4 weeks before you will notice the difference. Take 100 mg a day. I didn't notice the difference until after being on it a few months, I stopped and the burning felt more intense.

I have been working part time for the last six months until last week they increased my hours to 32 a week. After the third full day, at the end of the day, my hips, legs and feet hurt so bad that I almost thought I was not going to be able to walk. I really need the money and I am hoping my body will get used to the extra hours.

My regular doctor just got through running a ton of blood work, including vitamins, auto immune, HIV, Hepatitis etc., and it came back normal with the exception of elevated sugar. But, she ran these tests around the holidays where I was eating a ton of sugar. Lol! I have to go for a 12-hour glucose test next.

I had a really bad day today with pain and fatigue. Can't get comfortable even sitting.

I am sorry that you have a lot going on with you. Can I also ask how old you? I am 53.[/QUOTE]

Hello, well I will first will tell you that I am 59 yes I am old lol. But I so understand how you feel coming home from work thinking you willnot make it. You just described me before I had to quit my job. When I got home i had to litterly pull myself up our stairs and then sit for a while before I could get back up and make dinner. It was horriable.

When they tested you did they do an ANA test do you remember? Sometimes doctors read the tests and you will be a low postive so they consider it neg instead of postitive if I were you I would ask for copies if you already have not.

My feet started years ago hurting, I was told no fat pads left on them, so always had to wear shoes, but then they started to tingle, burn, feel swollen with shoes on and I would take the shoes off and they would not be swollen, tie shoes felt tight by the laces.. In the summer with the heat they hurt like heck, then when I swim and come home they burn so bad. I can handle the burning sensation so far. But when my feet are bad with the pain that is different. I am on a lot of meds for other diseases I have. Hashimotos, uctd, encephalopathy, myositis, I take a autoimmune suppressent called Imuran also along witht he rest so that may also help. I take carbamizipine for the neruopathy. Before the carbamizipne it felt like my calfs had something inside moving around, like the tissue was moving, now i get this now and then not to often, but they do burn if I do to much, or walk to much.

Are you hypothyroid by any chance? That can cause alot of issues also. My pain specialitst said the back issues could be affecting my legs also. But gee the injections only lasted three weeks, the first time and the last two did nothing. So I do not know if I will continue with them or not. I must have what you have in fact I think if I pull out my papers I would find that is what it is called, I just forgot lol. So yes who knows what causes the pains but with the burning in my thighs the neuro said neuropathy. Who knows, right? Sometimes I think I have toooooooo many doctors. lol. I will try what you suggested for the burning, thank you for the suggestion. susie

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