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Re: Sfn and ?
Mar 2, 2013
[QUOTE=ladybud;5140658]The neuropathy pain is usually more distal like lower legs and feet where the myositis pain is usually more proximal like thighs and upper arms. Myositis pain will go along with times when muscles feel weak and your underlying disease is flaring, whereas neuropathy pain is more of a steady or daily thing without as much fluctuation. Both can cause a burning sensation, but neuropathy usually involves numbness as well. I wish you well and hope the B12 and folate help with this.[/QUOTE]

Ladybug, how long have you had myositis? Also, does your thighs burn with the weakness? I do know that your cpk levels do not always co inside with the disease flaring. I think that is why I am always so confused. I am sure your lupus also causes muscle and joint problems as my scleroderma does and Hashimotos. My pain in my thighs are more intense when I try to walk for a few mins straight in other words, if I was to walk down a long hallway after about six mins or so they would start to burn and get extremely weak. My neuropathy did start in my lower legs and feet and have gotten worst also, more burning, tingling. but I can live with this. Even my arms hurting so much, but the walking and the legs, get to me.
Re: Sfn and ?
Mar 2, 2013
[QUOTE=sclerogirl;5140645]lasvegasgirl, I am sorry you have the same as I in the thighs. But I am selfish to say that I am glad to have found someone who gets it. I am like you that even when I stand, or move at all they burn, they sometimes burn sitting, but normally only after over doing things. Because I do push myself, I can not handle just sitting and I know it is not good for you either. I am interested in what facet disease is. I have never heard of it. I do have back issues too. In my lower spine. I have had shots in my spine one worked for three weeks the last two did not do nothing. The pain doctor did say it could affect the weakness in my legs, but the neuro said it is from the neuropathy. I am so grateful for your response as I felt like know one got it susie[/QUOTE]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.





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