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    Old 03-01-2013, 05:14 PM   #1
    sclerogirl
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    sfn and ?

    Hello, been gone for quite a while. I have quite a few rare autoimmune diseases going on for which has brought on neuropathy. My question is does anyone have the neuropathy affect their upper thighs and upper arms? I have gotten to the point I can only walk around six mins without my thighs burning so bad and hurting along with my sides by the hips. I feel like I have to take my hands and push myself on the thigh to help myself to walk a little further. Hanging on to a cart at a store lets me go longer. My upper arms always ache also. To touch my upper arms or thighs brings pain. I have the normal burning in feet and calfs, hands and I have no temp control in my body. But my main concern right now is the thighs and walking. I am on carbamizipine for the neuropahty. I also have a progressive muscle disease but tests done this week show my cpk level is normal so the neurolgist yesterday said it is from the neuropathy that it is progressing quickly. Has anyone else exspierenced such a progression as I have? I was dx about two years ago but had symptoms for quite a few years before. I also had this week a weird episode with a sudden episode of heavyness that went from one hand up my arm across my chest to the other arm and down to that hand. It was like tremors on the inside. the heaviness lasted for about two mins, it was scarey thought of stroke or heart, but it started to go away. But kept my arms feeling weird for days after. The neurolgist also said she feels it is the neuropathy any ideas on this? Thanks in advance for any help anyone else can give me.

     
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    Old 03-01-2013, 11:08 PM   #2
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    Re: sfn and ?

    Quote:
    Originally Posted by sclerogirl View Post
    Hello, been gone for quite a while. I have quite a few rare autoimmune diseases going on for which has brought on neuropathy. My question is does anyone have the neuropathy affect their upper thighs and upper arms? I have gotten to the point I can only walk around six mins without my thighs burning so bad and hurting along with my sides by the hips. I feel like I have to take my hands and push myself on the thigh to help myself to walk a little further. Hanging on to a cart at a store lets me go longer. My upper arms always ache also. To touch my upper arms or thighs brings pain. I have the normal burning in feet and calfs, hands and I have no temp control in my body. But my main concern right now is the thighs and walking. I am on carbamizipine for the neuropahty. I also have a progressive muscle disease but tests done this week show my cpk level is normal so the neurolgist yesterday said it is from the neuropathy that it is progressing quickly. Has anyone else exspierenced such a progression as I have? I was dx about two years ago but had symptoms for quite a few years before. I also had this week a weird episode with a sudden episode of heavyness that went from one hand up my arm across my chest to the other arm and down to that hand. It was like tremors on the inside. the heaviness lasted for about two mins, it was scarey thought of stroke or heart, but it started to go away. But kept my arms feeling weird for days after. The neurolgist also said she feels it is the neuropathy any ideas on this? Thanks in advance for any help anyone else can give me.
    Hi, I have one symptom that you are experiencing and that is the thigh pain. About a year ago, I experienced burning in both thighs but then the pain got so bad in my left thigh that I forgot about the right thigh. It is constant, never leaving me. After standing, walking or bending I get cramping and pinching in the left thigh. I have the same thing occuring on the bottoms of both feet. I have not read about anyone experiencing the same as what I am going through. My feet hurt as bad or even worse than my left thigh. The sides of my feet hurt as well and hard to walk on them or wear shoes but I am still working so muddle through the day. Recently, both thigh muscles hurt when I touch them.

    I was dx with facet disease, more so on left side from L4-S1 and think a lot of my thigh pain is due to this.

    I also have carpal tunnel in both hands but this just flares off and on.

    I probably did not help but I am learning that if you have an auto-immune disease, you run into secondary diseases and things become mind boggling to me.

    It appears there is not much to do about it and the different non invasive procedures are very expensive and provide temporary relief.

    I find it very disheartening.......

    I hope things settle down with you. It is no fun when you feel bad.

     
    Old 03-02-2013, 12:54 AM   #3
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    Re: sfn and ?

    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.

    Last edited by ladybud; 03-02-2013 at 12:56 AM. Reason: added iron info

     
    Old 03-02-2013, 07:32 AM   #4
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    Re: sfn and ?

    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

     
    Old 03-02-2013, 07:43 AM   #5
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    Re: sfn and ?

    Quote:
    Originally Posted by ladybud View Post
    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.
    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

     
    Old 03-02-2013, 07:49 AM   #6
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    Re: sfn and ?

    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.

     
    Old 03-02-2013, 09:34 AM   #7
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    Re: sfn and ?

    Quote:
    Originally Posted by ladybud View Post
    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.
    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.

     
    Old 03-02-2013, 09:46 PM   #8
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    Re: sfn and ?

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    Originally Posted by sclerogirl View Post
    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
    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.

     
    Old 03-03-2013, 08:00 AM   #9
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    Re: sfn and ?

    Quote:
    Originally Posted by LasVegasgirl View Post
    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.
    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

     
    Old 03-03-2013, 10:11 AM   #10
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    Re: sfn and ?

    If you got some relief from epidural steroid injections, you might get some relief from radiofrequency ablation of the sensory nerves in the same area, done by specialists who "burn" the pain sensing nerves. The effect lasts for 9 mos to more than a year usually and would be worth discussing with your Dr.

     
    Old 03-03-2013, 11:15 AM   #11
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    Re: sfn and ?

    Quote:
    Originally Posted by ladybud View Post
    If you got some relief from epidural steroid injections, you might get some relief from radiofrequency ablation of the sensory nerves in the same area, done by specialists who "burn" the pain sensing nerves. The effect lasts for 9 mos to more than a year usually and would be worth discussing with your Dr.
    Hello, I only had a three week relief from the shot, the second ones none at all, but the radiofrequency ablation sounds interesting, I will mention this to my pain dr. It would be so great to have relief for nine months wow. Thanks for the tip.

     
    Old 03-03-2013, 05:01 PM   #12
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    Re: sfn and ?

    Susie,

    My doctor checked the ANA and thyroid and they were fine. She checked almost everything. Lol!

    I did read about the ablation that lady bug speaks about. I am not sure how long they have been doing this type of laser treatment. I worry about them burning more than the nerves. Go online and they will show video's of the procedure. Just search for ablation for neuropathy.

     
    Old 03-03-2013, 07:14 PM   #13
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    Re: sfn and ?

    LasVegasGirl,
    Yes I think I will. I am always a little leary about new things, and a lot of times they wont do things on me because of the connective tissue diseases that I have. But I will check it out. Right now I can handle the burning and tingly of everything except for the thighs, it affects the walking and that is what is upsetting me so.

     
    Old 03-03-2013, 10:13 PM   #14
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    Re: sfn and ?

    Quote:
    Originally Posted by sclerogirl View Post
    LasVegasGirl,
    Yes I think I will. I am always a little leary about new things, and a lot of times they wont do things on me because of the connective tissue diseases that I have. But I will check it out. Right now I can handle the burning and tingly of everything except for the thighs, it affects the walking and that is what is upsetting me so.
    Susie,

    How did you get your dx of your other diseases? I am curious as my doctors have ran so many tests, testing for cancer, other auto-immune diseases and the like but nothing shows up in blood work, CT Scans or MRI's.

     
    Old 03-04-2013, 06:41 AM   #15
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    Re: sfn and ?

    Quote:
    Originally Posted by LasVegasgirl View Post
    Susie,

    How did you get your dx of your other diseases? I am curious as my doctors have ran so many tests, testing for cancer, other auto-immune diseases and the like but nothing shows up in blood work, CT Scans or MRI's.
    Well, I also went thru the ringer like you are to be dx. I started to think I was nuts. But I am not a hypocondraic and normal pain level I can handle more than most so I knew it was not my head there was something really wrong with me.

    That being said, I had many blood tests, including the ANA test that I mentioned before which showed positive low first then it got higher it showed a speckled pattern which means I had somesort of autoimmune disease more than likely lupus or scleroderma but my symptoms led the doctors to think scleroderma. I developed Raynauds disease which is my hands and fingers turned blue/red/white with cold or stress, so that helped confirm the dx with the connective tissue disease. I will tell you if you have swollen hands or fingers ever? That is a symptom of connective tissue along with the joint pains and muscle and fatique. This is a very condensed version. Now my hashimotos encephalitis is a different matter

    Hashimoto's Encephalitis is also an autoimmune disease where the neurons in your body attack your brain and can cause you seizure like episodes, balance issues, confusions, memory loss, speech difficulty, in serious cases you may go into a coma. I never got that bad. It really has nothing to do with your thyroid like the name inplys. To be dx they go by a test called TPO it is a thryoid test that is not reg done but should be and normal is below 9 mine was 1200 then the symptoms I was having is how I was dx with this very rare disease. Also I had an EEG which only showed front lobla slowing on the left side with no explanation why this is also charteristic of the HE.
    Muscle disease, I was dx by emg/nerve conduction tests, symptoms, and a muscle biopsy. Also for a time a test blood test called cpk was high which points to the myositis. which is also autoimmune disease.

    I did make things rather simple here but there was more to it of course. May I ask what is going on with you. Why are they doing all the tests? Not to be nosey lol but I have been through the wringer a few times trying to be dx maybe I can help.,

     
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