Mayo Clinic Connect
Anyone here dealing with peripheral neuropathy?
Liked by John, Volunteer Mentor, peggyj4411, jazzy27, heather074 ... see all
Rabbit 10, I was first diagnosed with idiopathic peripheral neuropathy about 5 years ago by a neurologist. In the process, it was also determined that I have M-GUS which stable. My feet are numb and tingly with pain caused by especially temperature changes. To minimize any painful tingling at night, I sleep with a fresh pair of socks on my feet. I was started on Gabapintin 300 mg, 3 x per day. It caused restless legs syndrome and I could not sleep at night. I was given Trazadone 50 mg at bed and I sleep very well now. The neuropathy has spread to my hands and have mostly numbness and little sensory feeling with respect to extreme temperatures. For example I can touch something hot like a hot potato from the oven and have a slow response to the temperature and then the pain from the burn goes away within a minute. I am taking 900 mg, 3x per day plus Cymbalta to treat the neuropathy. I pray that each find the right treatment to relieve the pain.
Liked by John, Volunteer Mentor
Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.
How long have you been dealing with peripheral neuropathy?
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I am glad you mentioned this. I had forgotten about it. Yes it does seem to help. I got the wise idea one time that if I grated the soap and put it on the area of where your feet were that it would help more. Well it did,but the grated soap also ate a hole in my sheet so don’t try that. I plan on putting soap on my sheets tonight.
I have suffered at least 10 years. I currently take gabapentin for it. It finally got so bad that I was referred to a neurologist. I have just begun treatment with him. So far he has increased my gabapentin from 300 to 900 , Has increased my b-12 by having me take 5000 mgs of vitamin b-12 under the tongue every day. I also take vitamin b-12 shots every 3 weeks. He has ordered xrays of my lumbar area of spine as I have a fracture there and blood tests, I have another appointment with him on Oct 10 and will update his findings
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.
I am using a combo of eucaliptis (sp) and tree tea oil mixed with almond oil. seems to calm it down. Vicks vapor rub calms it. Also use on ankles and legs as they like to torture me also. When I can’t get anything to calm it down, I get up and put my feet on my vibrator. It is a nice one, has a base of about 5 inches by 8 inches
Hello @chefbrown, thank you for sharing your story and treatments that are working for you. If you like to read, you might get want to read the book by Dr. Terry Wahls – The Wahls Protocol. She has an amazing story of doing he own research into MS to help treat herself since she has MS. http://terrywahls.com/about/about-terry-wahls/. Thanks again for sharing.
Hello @johnbishop and thanks for the info. I will check it out. I was a chef for over 25 years, until I could no longer hold things and began falling a lot. I have studied nutrition and am always looking to learn more. Another good book for info on diseases and nutrition is Epigenetics: The Death of the Genetic Theory of Disease Transmission by Dr. Joel “Doc” Wallach with Dr. Ma Lan and Dr. Gerhard N. Schrauzer.
Liked by Colleen Young, Connect Director, John, Volunteer Mentor
Hi Joannem, if you saw my note on putting soap UNDER the sheet for RLS no need to do anything to the soap. I sleep in a double size bed, but the intact BAR of soap is even on the other side of the bed. It is the same bar I’ve used for years. The bar is now about half the size it was originally, but that is only from it being in the bed for so many years. Not sure but maybe 20, 30 or more years! As I mentioned, the MD who wrote that i column where that suggestion was, admits no one knows why it works, but many people responded that it surely workesfor them. I have no idea at this time the brand of soap I used. @gailfaith
Billh – you may also be interested in connecting with other Connect members who have MGUS in this group discussion
– MGUS http://mayocl.in/2cKG3tv
Went to Internist yesterday with complaint of pain interrupting sleep numerous times. Rx: Elavil ( Amitriptyline) 25 MG.
Slept soundly with only one trip to bathroom. Groggy for about an hour after getting up, but fully alert after about an hour.
dosage of 25 mg; 1 tablet daily at bedtime. No heart issues. After 3 nights, sleep is much improved and pain is not an issue. Yes, side effects are lengthy, but it seems every med has them…just have to be careful. I’ll report progress after 2 weeks..so far so good.
Was originally diagnosed with Multiple Myeloma because of presence of M-Protein and skull lesions. Downgraded to MGUS when lesions, on second reading, were described as “not consistent with multiple myeloma”. Only 20% chance of progression to MM. No other blood abnormalities.
Hello Everyone, I have PN in feet and legs and restless leg as well. The Neurologist said that the two often go together. The PN is from Multiple sclerosis. I started Medical Marijuana a few years ago and was surprised at how well it worked for the pain and numbness as well as calming the RL. also another benefit is it helps me sleep better. There are different strengths and different ways to take it not just smoking. I use a vaporizer as it doesn’t burn the material so I get better results without irritating my COPD. There are strains that don’t get you high but work medically. This with 1200ml Gabapentin have made my life livable again as the treatment helps MS as well. I use this because nothing else seemed to work for me. Good luck all.
@chefbrown, you likely have valuable experiences that you could share with Connect members talking on these 2 discussions:
– Chronic pain and medical marijuana http://mayocl.in/2c2i9Hx
– CBD http://mayocl.in/2cBCdDn
People are asking questions of people who have experience (positive or negative) with medical marijuana for pain.
Hi, my name is Terry and I’ve had neuropathy in both feet and hands and half way up calves of legs for 5 + years.
Is there any things I can try for it. Thanks for listening.
Hi and welcome.
What, if anything, have you already tried for it?
Do you have any diagnosis as to what caused it? If so, is that condition being treated?
I have Diabetes, Lupus, R.A., Fibromyalgia, Hypothyroidism, Heart disease. IBS and many more problems.
Sorry to hear that you have so many overlapping ailments in addition to peripheral neuropathy. It look like you are a candidate for being diagnosed with Familial Autoimmunity. That said, of the cluster of things you list, diabetes jumps out as the primary risk factor for peripheral neuropathy. With this many ailments seems like you have to play the odds.
Familial association between type 1 diabetes and other autoimmune and related diseases.
Among a total of 450,899 patients, 21,168 were diagnosed with type 1 diabetes. Familial cases amounted to 10.3% of all type 1 diabetes patients. SIR for type 1 diabetes was 8.23 in offspring of affected parents, 11.92 in singleton siblings, 39.22 in multiplex families and 21.88 in twins; the calculated risk for monozygotic twins was 32.33. Type 1 diabetes in offspring was associated with 13 diseases in parents, including Addison’s disease (SIR 2.41), asthma (1.38), coeliac disease (2.73), Graves’ disease/hyperthyroidism (1.86), Hashimoto disease/hypothyroidism (2.35), pernicious anaemia (3.09), primary biliary cirrhosis (3.63), rheumatoid arthritis (2.12), sarcoidosis (1.62), systemic lupus erythematosus (2.04), ulcerative colitis (1.23) and Wegener’s granulomatosis (2.12).”
but I’m not a doctor so I can’t diagnose. You are being seen by specialists, primarily a rheumatologist, endocrinologist and neurologist right?
What treatments are you on?
Is the diabetes in good control?
Peripheral neuropathy is definitely a topic of great interest affecting many Connect members. @johnwburns has started several off-shoot discussions around specific issues and peripheral neuropathy. Please see these discussion threads and join in with your thoughts and experiences:
* Peripheral Neuropathy – Stretching and Exercise http://mayocl.in/2d4r1iC
* Peripheral Neuropathy – Everything cures it and nothing cures it http://mayocl.in/2cOYaCJ
* Peripheral Neuropathy and the Spine http://mayocl.in/2cOZ41O
Given these and a number of other discussion threads dedicated to peripheral neuropathy, it might be time to start a group specifically dedicated to the topic.
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