Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
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Todd, so sorry to hear about your wife’s troubles. You are doing the right thing exploring all options and like John Burns says – don’t give up hope. There also is a Facebook group – “Our Neuropathy Friends” that is quite active and has over 3000 group members. You might want to join the group and post questions there too. I’ve been struggling with my peripheral neuropathy for over 10 years but have just recently started searching for cause and possible treatments being one that hates going to the doctor. If you are an avid reader or like to read, I would recommend the book “Wahl’s Protocol” by Dr. Terry Wahl. She has an amazing story on her research into autoimmune diseases and how diet plays a part. I’m halfway through the book and am attempting to try the first part of the diet but I’m 73 and so set it my ways it’s a daily struggle. Good luck in your journey and please never give up. Know that there are others out there praying for you.
@johnbishop :Thank you for the information on the “Wahls Protocol”. I ordered a copy, cant wait. I look up Dr. Terry Wahls, what an testamony. I belive more than people can benifit from what she has researched in the integrative approch to healing chronic autoimmune conditions. I also think if someone is suffering with a sickness is to find purpose in something, and I think these post give many a type of purpose in helping each other. I thank you so very much, my purpose will be in studing this book, puting it into action, and sharing it whith others. Thanks Salena54
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Salena, you can also get it as a softcopy if you have an iPad or tablet. I was able to order it through iTunes and view it in iBooks on both my iPad and iPhone. That way if I’m waiting somewhere (story of my life) I can read it using my phone. I’ve only started the basic diet this past week and have lost about 5 lbs (a side benefit). Hoping if I can stay on the diet I will see some reduction or improvement in my neuropathy but I know it’s not an overnight thing. Good luck. John
Liked by salena54
My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can’t do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)
JohnWBurns: I’m so sorry to hear about you and your wife’s trials. I
know it can be discouraging when you haven’t received the care your wife
deserves. The insurance company I’m with isn’t anything to brag about!
“But” I can truly say that my Dr. does everything he can for me, and when I
have one of my ugly flair ups, he has compassion and understanding of my
pain in my flair up difficulty in walking. I have suffered migraines since
I was 10, due to an accident. At 22 had a histerectomy, due to a tumor, at
23 had my gallbladder removed, one doctor told my husband I was trying to
get attention. Needless to say by the time I finally got the help I needed
they had to do emergency surgery. (They said I was to skinny to have
gallbladder disease) LOL!!! I always have had problems due to my accident I
had at 10years old. Have arthritis in my neck in 3 vertebras. Before I
changed my Major in education, I was a Veterinary Technician and surgery
assistant, my husband and I trained cutting horses, and farm work, all
these things took its toll on my body, a woman wasn’t made for some types
of work. Was always active, but paid for it afterwards. Know I can’t be
active. It was difficult for me. I went back to school studied in Christian
Counseling, loved everything about it. It helped me mentally and
emotionally, physically and gave me back purpose, which we all need to
feel. I hate being a burden to my husband on those bad days, but he always
have something to lighten my load. Your wife is on Lyrics, I hope it works
for her. I couldn’t take it, and I know others it effects their emotions,
and mobility. Will be praying for you and your wife. salena54
@johnbishop :Thanks again. I know can read it as I wait for my book. As you progress on the diet let me know how it effects you health.
Thehubbytodd, I feel for you & wife. I had to go through much of the same issues. I’d soaked my feet in warm water in a foot massager and my wife would rub a sports cream on my feet every night before bed. I took tramadol to sleep which made me loopy though. I’d elevate my feet and hopefully fall asleep before everything wore off.
I couldn’t walk for 2 years, forced to retire, moved into assisted living and in an power chair to get around. We even bought a van with an automatic ramp so I could get out once and awhile. I’ve tried Embrel, methotrexate, Lyrica, prednisone, oxycodin, and have settled in with gabapentin, fentanyl patches, mycophenalate (cellcept), and cymbalta. I’ve since developed ulcers and GERD from all the meds and worry but my neuropathy pain is tolerable between doses. I’m out of assisted living and walking again. Nearly 45 doctors, dozens of ER visits, and countless thousands of dollars til Mayo figured it out. It was hell on my wife and we had NO life. But we got through the worst of it for now. We’ve been waiting for the other shoe to drop, but it hasn’t (yet).
I hope I was able to give you some insight as to what we went through. I know it may not give you much solace for your situation, however there could be some light at the end of the tunnel for you. God bless
Liked by Colleen Young, Connect Director
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.
I had burning, tingling numbness in my feet and buttocks back in 2008. I was diagnosed with lumbar spinal stenosis and tried many meds and physical therapy. Nothing helped so I had a L4/L5 laminectomy in 2010. The burning, tingling numbness continued and again I tried Gabapentin and a prescription topical cream. When that didn’t helpI went to Johns Hopkins Neurological Department in 2012 and after extensive testing they told me that I would have to live with the pain. In 2015 I saw a different neurosurgeon and he recommended another L4/L5 surgery. After that surgery, I had some relief and now have burning pain and numbness only in my left foot and lower leg. I take 900mg of Gabapentin daily. It helps some and I take Tramadol when the pain is strong. I actually have pain flare ups that last for several days when I am on my feet too long. My pain is increased when I stand or walk but I still have the ability to walk.
Does anyone relate to this? Any other things to try?
Welcome to this discussion @robertlclark. I think a lot of people can relate to what you are describing, especially @kmintx @johnwburns @bobsconnect @luladavis.
I know this message is rather buried in this thread, but I hope you can offer some thoughts to Robert about his ongoing pain and neuropathy issues.
I’ve been on a Fentanyl patch for years for my peripheral neuropathy. It’s the only thing that works to keep the burning pins and needles feeling at bay. My strength on the patch is 100 mcg/hr. I replace it at the same time every three days. I really can’t survive without it.
Pain warrior – Thank you for the information on the Fentanyl. I will ask my Dr. About it. Are there any significant side affects? My neuropathy in my left foot and lower leg has only affected my sensory nerves. I still have my motor nerves intact so I can still walk. Hope this neuropathy doesn’t affect my motor nerves. Are there any other meds to try?
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.
Hello Martid, no I don’t have chemo induced peripheral neuropathy. Evidently it is idiopathic, no known cause, My issues are pins and needles in legs and hands and arms, pain in my legs and numbness in my hands. It seems to affect my walking as sometimes I am so unsteady on my feet. At the same time I am dealing with restless legs syndrome which is also painful. I use a TENS machine for the neuropathy and requip for the rls along with tranadol. At night I place a heated pad under my legs and prop them up with a pillow. That seems to help.
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. 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.
Hello Johnwburns I have had the neuropathy for about 3 to 4 years. It doesn’t get any better and sad to hear that yours got worse. It is not chemo induced but of unknown origin. And I also have restless legs syndrome which also created pain. The neuropathy is treated with a TENS machine and the rls with requip and tramadol. At night I put heated pad under my legs and prop them up with a pillow. I do have the pins and needles in legs and arms and numbness in my hands. And my walking is ofte unsteady. I agree that their is probably nothing that can be done for either condition just try to cope with it. Good luck. Im interested to hear what your neurologist has to tell you. Please share,.
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.
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.
Liked by Colleen Young, Connect Director, robertlclark
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.
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.
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