I have autonomic/peripheral neuropathy caused by GPA/Wegeners (vasculitis) for 6 yrs. I take gabapentin for the pain and cymbalta for the anxiety that goes along with it. I'm seeing a rheumotologist at Mayo Clinic in Scottsdale, AZ for these and he has also prescribed 50mcg fentanyl patches which has helped immensely. The combination does have side effects, mainly dizziness, which I deal with because of the pain relief benefit. The numdness does go along with neuropathy. That is the next most difficult obstacle. Trying to do anything, especially small is very frustrating. Buttons, zippers, coins, etc. are a nightmare at times. However, I have other health issues to deal with as well. More meds and doctors. It appears as though I will be dealing with this for the rest of my life. I turned 65 last Oct 2015.
Hello bobsconnect thank you for your reply. The cause of my peripheral neuropathy is unknown and I also have restless legs syndrome. They both just came out of nowhere. With the neuropathy I have the pins and needles in legs and arms and numbness in my hands. You are right, it is a pain sometimes trying to do things with your fingers. Right now I use a TENS machine for the neuropathy pain but doesn't help the numbness. I take requip and tramadol for the rls which I believe helps the neuropathy as well. Putting a heated oad under my legs and prop them up with a pillow seems to help too. The other thing that bothers me is the unsteadiness when walking that sometimes occurs. Thanks for your post it is good to know how other people are dealing with this disease.
The neurologist has me on mycophenolate and the rheumatologist thinks that augmenting it with plaquenil might be worth a try. Plaque nil can rarely be cardiotoxic so need to have the cardiologist weigh in on that. Per the latest EMG, my issues haven't gotten any worse in the last couple of years. They have no idea why, maybe a lot of walking. They are 80/20 sure its caused by Sjogren's. There's an outfit called The Foundation for Peripheral Neuropathy which might be able to provide some information. Of course they want donations. I have a TENS unit. Good idea. Might be worth a try.
The neurologist has me on mycophenolate and the rheumatologist thinks that augmenting it with plaquenil might be worth a try. Plaque nil can rarely be cardiotoxic so need to have the cardiologist weigh in on that. Per the latest EMG, my issues haven't gotten any worse in the last couple of years. They have no idea why, maybe a lot of walking. They are 80/20 sure its caused by Sjogren's. There's an outfit called The Foundation for Peripheral Neuropathy which might be able to provide some information. Of course they want donations. I have a TENS unit. Good idea. Might be worth a try.
Hopefully those meds will help you. I'm curious about your walking. Do have pain from walking and do you feel unsteady on your feet? I'm supposed to walk a lot too but my legs seem to give out on me whenever I try and if the ground is uneven I feel very unsteady.
I have been dealing with peripheral neuropathy for almost 20 years but it has kicked up significantly in the last 3. I also have autonomic neuropathy, both due to Sjogren's syndrome. Â I take gabapentin and duloxetine but pain isn't the worst problem, numbness is in my case. I have been seeing rheumatologists for this but I get an opinion from a neurologist in a few days. Highly unlikely that anything can be done about either form of neuropathy. Hopefully you'll have better luck with the chemo induced version.
Good to hear from you @rabbit10. Can you believe that this thread that you started less than 2 months ago has over 100 messages? Wow. You talk about restless leg syndrome. My mom and I both deal with this. I didn't realize how many suffer with it and how bad it can be for some people. Did you see this discussion on RLS that started last month? https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/ Your input would be most welcome.
There is actually an official diagnosis now for chemo induced peripheral neuropathy. Is yours from chemo or something else? There are prescription meds that work for some & also have some unpleasant side effects for some. My husband takes Gabapentin and has no problem with it. I tried it, and it did help some, but I was constantly dizzy. It was a major problem if I got up in the middle of the night. It did not improve enough to put up with the side effect.
What kinds of issues are you dealing with? I understand it can be very different from one person to the next. Whatever, it is uncomfortable, can certainly cause us to be unsure on our feet and be very frustrating. I hope you find something that helps. I am 3 years out from taking Taxotere, which is what caused mine. It is better but still a pretty major issue. I have it in both feet and both hands.
Hi. I saw @colleenyoung recommend this group in the autoimmune group. I was originally diagnosed with idiopathic too 4 years ago then 4 months ago they found my autoimmune disease by skin biopsy.
Have you been diagnosed with any other illnesses? I know neuropathy is very painful and frustrating. I'm still looking for answers and treatment form my autoimmune disease so that hopefully I can get this pain under control.
I hope you find some.
About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I've come to regret it a little since it's gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I'm waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it's associated with pre-diabetes but I'm not buying that diagosis just because I've had it for a long time and do not have diabetes. I think it's related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I'm really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening...praying that you all will find some relief.
Me too. It took them four years to find it. They didn't believe me because the blood tests were "inconclusive" and they said I had fibromyalgia as I continued to deteriorate.
About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I've come to regret it a little since it's gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I'm waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it's associated with pre-diabetes but I'm not buying that diagosis just because I've had it for a long time and do not have diabetes. I think it's related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I'm really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening...praying that you all will find some relief.
Isolating an autoimmune disease can be very complicated unless the symptoms jump out at them, like discoid lupus with corroborating blood work. Did you have a positive ANA test? Any indicators of ongoing inflammation like a positive ESR and/or CRP? What made them dump it into the fibromyalgia bucket? My pain has subsided the longer that I've had the neuropathy, now numbness is the primary thing. That and its impact on my gait. I have to be careful walking over uneven surfaces. The pain meds that I use now are gabapentin and duloxetine, which are usually adequate. I have some tramadol too and will use that only if things get out of hand from too much walking. If I had any advice I would say to keep walking, even with pain. If you have a treadmill, make yourself use it. I'm convinced that a lot of waking has arrested the progress of my neuropathy but medications have probably helped as well. You may never find out the root cause for your problems. I've never heard of fibromyalgia causing neuropathy but I'm not sure that's what you said. Anyway, don't let the pain beat you, take control of it.
None of my numbers ever reached positive; ANA, or any inflammation indicators. But I the numbers, including RA factor, have been generally more than half and continued to increase towards positive over the past year. (Tested 3 times)
No, I don't think the pain/ numbness has to do with fibromyalgia. They said I have fibromyalgia. I've been screaming from the mountain-tops that it's not fibromyalgia and they wouldn't listen. I JUST left from a muscle biopsy so I should have confirmation on my autoimmune disease. I'm currently on no pain meds. I hav tried gabapentin and duloxetine and neither touched my pain.
You are right. The numbness is a whole other beast. I'm only 38; I can't grasp things...I can't feel things...I have to have a special case on my phone. I hold it for a bit then I lose feeling in my hands. I hear [I'm] "too young for this" way too often. I don't throw that pitty party because there are children with the disease that it appears I have. And if people as saying that I should snap out of it, I'd like to do that too but I need some medical assistance. 😀
Thanks for the tips. Id like to get back to exercise, I was a ballet dancer and an actress but a hallmark of my autoimmune disease is weak shoulders and hips as well as organ failure. I am currently on three inhalers for COPD.
I started doing bicep curls and sitting leg lifts a few months ago but I have to be careful. Once I get good medicine for autoimmune, pain and clearance from my pulmonary doctor I plan to work out again.
None of my numbers ever reached positive; ANA, or any inflammation indicators. But I the numbers, including RA factor, have been generally more than half and continued to increase towards positive over the past year. (Tested 3 times)
No, I don't think the pain/ numbness has to do with fibromyalgia. They said I have fibromyalgia. I've been screaming from the mountain-tops that it's not fibromyalgia and they wouldn't listen. I JUST left from a muscle biopsy so I should have confirmation on my autoimmune disease. I'm currently on no pain meds. I hav tried gabapentin and duloxetine and neither touched my pain.
You are right. The numbness is a whole other beast. I'm only 38; I can't grasp things...I can't feel things...I have to have a special case on my phone. I hold it for a bit then I lose feeling in my hands. I hear [I'm] "too young for this" way too often. I don't throw that pitty party because there are children with the disease that it appears I have. And if people as saying that I should snap out of it, I'd like to do that too but I need some medical assistance. 😀
Thanks for the tips. Id like to get back to exercise, I was a ballet dancer and an actress but a hallmark of my autoimmune disease is weak shoulders and hips as well as organ failure. I am currently on three inhalers for COPD.
I started doing bicep curls and sitting leg lifts a few months ago but I have to be careful. Once I get good medicine for autoimmune, pain and clearance from my pulmonary doctor I plan to work out again.
The frustration of not having any smoking gun test results can be frustrating to the point of infuriating. They won't make the call on tests based on trends so that's where the chronic fatigue/fibromyalgia bucket comes in handy. Biopsies might not be smoking guns either, or so I'm told by my neurologist. Dysfunctional nerves can appear completely normal. Did they test for the more obvious, like MS? Can you think of a medication that you had used prior to your problems? Gabapentin and duloxetine didn't work for me until I trended toward numbness. Have you seen a pain specialist? A different anticonvulsant or antidepressant or combo might help. Hope that I'm not being annoying by throwing some things out there that may be obvious. There is an answer, but it may take a while to get to it.
None of my numbers ever reached positive; ANA, or any inflammation indicators. But I the numbers, including RA factor, have been generally more than half and continued to increase towards positive over the past year. (Tested 3 times)
No, I don't think the pain/ numbness has to do with fibromyalgia. They said I have fibromyalgia. I've been screaming from the mountain-tops that it's not fibromyalgia and they wouldn't listen. I JUST left from a muscle biopsy so I should have confirmation on my autoimmune disease. I'm currently on no pain meds. I hav tried gabapentin and duloxetine and neither touched my pain.
You are right. The numbness is a whole other beast. I'm only 38; I can't grasp things...I can't feel things...I have to have a special case on my phone. I hold it for a bit then I lose feeling in my hands. I hear [I'm] "too young for this" way too often. I don't throw that pitty party because there are children with the disease that it appears I have. And if people as saying that I should snap out of it, I'd like to do that too but I need some medical assistance. 😀
Thanks for the tips. Id like to get back to exercise, I was a ballet dancer and an actress but a hallmark of my autoimmune disease is weak shoulders and hips as well as organ failure. I am currently on three inhalers for COPD.
I started doing bicep curls and sitting leg lifts a few months ago but I have to be careful. Once I get good medicine for autoimmune, pain and clearance from my pulmonary doctor I plan to work out again.
I was a vegan until I started having kids and a pescatarian who trended towards wholistic approach so no, this wasn't medically induced. I tried for 15 years to treat my gastro and allergy issues wholistically and now I vlog about how dangerous that is so I'm kinda a pariah in the chronic illness community because people are getting on a band wagon as I am learning a lesson. (This also frustrates doctors because my organ and breve damage from not knowing I had a serious autoimmune disease all there years is so far gone and they want to suggest vitamin this and that and I've been-there-done-that.) My husband works for an enzyme company and they partner with vitamin and essential oils companies do I get my heart's desire for free.
I actually stopped taking them all in March because I think between my healthy diet and all of the supplements, that may be screwing my test results too.
I have visibly swollen ankles;which is not a hallmark of fibromyalgia. I have a ganglion cyst on my wrist, also not but also can be totally totally benign and not a major arthritis problem.
You are right, they might try to ignore biopsy results, my last rheumatologist ignored the positive skin biopsy alone and refused to order the muscle biopsy as is standard procedure. That is why he is no longer my rheumatologist. I subscribe to an info page the sent me a link to the experts on my disease in Philadelphia and they explain that with the muscle biopsy, skin biopsy, the organ failure, the neuropathy, they have enough. If the new neurologist says he doesn't, then I will become enraged. My disease has a 50-70% mortality rate and this is why...dying from preventable lung disease or throat cancer or because the autoimmune disease goes untreated.
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Hello bobsconnect thank you for your reply. The cause of my peripheral neuropathy is unknown and I also have restless legs syndrome. They both just came out of nowhere. With the neuropathy I have the pins and needles in legs and arms and numbness in my hands. You are right, it is a pain sometimes trying to do things with your fingers. Right now I use a TENS machine for the neuropathy pain but doesn't help the numbness. I take requip and tramadol for the rls which I believe helps the neuropathy as well. Putting a heated oad under my legs and prop them up with a pillow seems to help too. The other thing that bothers me is the unsteadiness when walking that sometimes occurs. Thanks for your post it is good to know how other people are dealing with this disease.
The neurologist has me on mycophenolate and the rheumatologist thinks that augmenting it with plaquenil might be worth a try. Plaque nil can rarely be cardiotoxic so need to have the cardiologist weigh in on that. Per the latest EMG, my issues haven't gotten any worse in the last couple of years. They have no idea why, maybe a lot of walking. They are 80/20 sure its caused by Sjogren's. There's an outfit called The Foundation for Peripheral Neuropathy which might be able to provide some information. Of course they want donations. I have a TENS unit. Good idea. Might be worth a try.
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1 ReactionHopefully those meds will help you. I'm curious about your walking. Do have pain from walking and do you feel unsteady on your feet? I'm supposed to walk a lot too but my legs seem to give out on me whenever I try and if the ground is uneven I feel very unsteady.
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2 ReactionsGood to hear from you @rabbit10. Can you believe that this thread that you started less than 2 months ago has over 100 messages? Wow. You talk about restless leg syndrome. My mom and I both deal with this. I didn't realize how many suffer with it and how bad it can be for some people. Did you see this discussion on RLS that started last month? https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/ Your input would be most welcome.
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1 ReactionHi. I saw @colleenyoung recommend this group in the autoimmune group. I was originally diagnosed with idiopathic too 4 years ago then 4 months ago they found my autoimmune disease by skin biopsy.
Have you been diagnosed with any other illnesses? I know neuropathy is very painful and frustrating. I'm still looking for answers and treatment form my autoimmune disease so that hopefully I can get this pain under control.
I hope you find some.
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1 ReactionMe too. It took them four years to find it. They didn't believe me because the blood tests were "inconclusive" and they said I had fibromyalgia as I continued to deteriorate.
Isolating an autoimmune disease can be very complicated unless the symptoms jump out at them, like discoid lupus with corroborating blood work. Did you have a positive ANA test? Any indicators of ongoing inflammation like a positive ESR and/or CRP? What made them dump it into the fibromyalgia bucket? My pain has subsided the longer that I've had the neuropathy, now numbness is the primary thing. That and its impact on my gait. I have to be careful walking over uneven surfaces. The pain meds that I use now are gabapentin and duloxetine, which are usually adequate. I have some tramadol too and will use that only if things get out of hand from too much walking. If I had any advice I would say to keep walking, even with pain. If you have a treadmill, make yourself use it. I'm convinced that a lot of waking has arrested the progress of my neuropathy but medications have probably helped as well. You may never find out the root cause for your problems. I've never heard of fibromyalgia causing neuropathy but I'm not sure that's what you said. Anyway, don't let the pain beat you, take control of it.
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3 ReactionsNone of my numbers ever reached positive; ANA, or any inflammation indicators. But I the numbers, including RA factor, have been generally more than half and continued to increase towards positive over the past year. (Tested 3 times)
No, I don't think the pain/ numbness has to do with fibromyalgia. They said I have fibromyalgia. I've been screaming from the mountain-tops that it's not fibromyalgia and they wouldn't listen. I JUST left from a muscle biopsy so I should have confirmation on my autoimmune disease. I'm currently on no pain meds. I hav tried gabapentin and duloxetine and neither touched my pain.
You are right. The numbness is a whole other beast. I'm only 38; I can't grasp things...I can't feel things...I have to have a special case on my phone. I hold it for a bit then I lose feeling in my hands. I hear [I'm] "too young for this" way too often. I don't throw that pitty party because there are children with the disease that it appears I have. And if people as saying that I should snap out of it, I'd like to do that too but I need some medical assistance. 😀
Thanks for the tips. Id like to get back to exercise, I was a ballet dancer and an actress but a hallmark of my autoimmune disease is weak shoulders and hips as well as organ failure. I am currently on three inhalers for COPD.
I started doing bicep curls and sitting leg lifts a few months ago but I have to be careful. Once I get good medicine for autoimmune, pain and clearance from my pulmonary doctor I plan to work out again.
-
Like -
Helpful -
Hug
1 ReactionThe frustration of not having any smoking gun test results can be frustrating to the point of infuriating. They won't make the call on tests based on trends so that's where the chronic fatigue/fibromyalgia bucket comes in handy. Biopsies might not be smoking guns either, or so I'm told by my neurologist. Dysfunctional nerves can appear completely normal. Did they test for the more obvious, like MS? Can you think of a medication that you had used prior to your problems? Gabapentin and duloxetine didn't work for me until I trended toward numbness. Have you seen a pain specialist? A different anticonvulsant or antidepressant or combo might help. Hope that I'm not being annoying by throwing some things out there that may be obvious. There is an answer, but it may take a while to get to it.
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Helpful -
Hug
2 ReactionsI was a vegan until I started having kids and a pescatarian who trended towards wholistic approach so no, this wasn't medically induced. I tried for 15 years to treat my gastro and allergy issues wholistically and now I vlog about how dangerous that is so I'm kinda a pariah in the chronic illness community because people are getting on a band wagon as I am learning a lesson. (This also frustrates doctors because my organ and breve damage from not knowing I had a serious autoimmune disease all there years is so far gone and they want to suggest vitamin this and that and I've been-there-done-that.) My husband works for an enzyme company and they partner with vitamin and essential oils companies do I get my heart's desire for free.
I actually stopped taking them all in March because I think between my healthy diet and all of the supplements, that may be screwing my test results too.
I have visibly swollen ankles;which is not a hallmark of fibromyalgia. I have a ganglion cyst on my wrist, also not but also can be totally totally benign and not a major arthritis problem.
You are right, they might try to ignore biopsy results, my last rheumatologist ignored the positive skin biopsy alone and refused to order the muscle biopsy as is standard procedure. That is why he is no longer my rheumatologist. I subscribe to an info page the sent me a link to the experts on my disease in Philadelphia and they explain that with the muscle biopsy, skin biopsy, the organ failure, the neuropathy, they have enough. If the new neurologist says he doesn't, then I will become enraged. My disease has a 50-70% mortality rate and this is why...dying from preventable lung disease or throat cancer or because the autoimmune disease goes untreated.