Living with Neuropathy - Welcome to the group

Thank you, Colleen! My name is Anna and i have been battling symptoms of neuropathy since 2007. I was diagnosed with distal symmetrical sensory neuropathy May 17th 2016. My symptoms are burning pain in My feet when I walk. I do not have numbness or tingling or pain at rest. My doctor ordered orthotics for me and wanted me to take Lyrica and Amitriptyline. I chose to try diet, exercise and supplements first. My A1C has never been above 6.1 and at this time it is 5.4. So, my sugar is well controlled.

In August of 2018 the pain in my feet had become unbearable. I made the decision to try the Lyrica and Amitriptyline. The results were horrific. I was on 150 mg twice a day and 25 mg at night of Amitriptyline. I tried to maintain this dose and was on it for six weeks. I felt like a zombie! I spent most of my time sitting or in bed. I couldn't drive and it was impossible to cook or clean. I stopped both medications gradually but still feel the effects of both. It's obvious that that these drugs are not tolerated by my system.

I have a friend who had the adult stem cell procedure done one year ago. She has no pain. However, her insurance did not cover the procedure. I would do anything to be able to walk again but I'm having trouble finding reputable information on the internet about stem cell procedure. I happened upon your website and here I am!

I'm interested in any information I can gather here. I want to walk with my family again!

Thank you for adding Me!

AnnaC123

Hello @annac123, Welcome to Connect. There is another discussion you may be interested in reading where members are discussing stem cell treatments for neuropathy here:

Groups > Neuropathy > Stem cell treatment for peripheral neuropathy - any good?
-- https://connect.mayoclinic.org/discussion/stem-cell-treatment-for-peripheral-neuropathy-any-good/

John

Thank you, John!

@deeinpa did you ever get any answers to your itching symptoms? I am diabetic and have peripheral and autonomic neuropathy in my diagnoses. I had forgotten this until now but in the late ‘80’s early ‘90’s I had deep itching burning pain in my legs. I did not associate it with neuropathy at the time. It occurred in the summers and our family was participating in 10k walking events. I thought the itching was due to heat, humidity, perspiration, sun screen, bug spray, or Absorbine Junior I was using for muscle aches and pains. It would eventually pass and I’d forgotten about it. Another possibility, years later I was diagnosed with CKD (chronic kidney disease - another complication of diabetes). Many people with CKD also experience terrible itching. Mentor @johnbishop has provided some good informational links. You might want to also check out the kidney bladder group for discussions on there about itching.

@deeinpa here are the links I think @cehunt57 mentioned. They are from a post by @kanaazpereira .

You might wish to go through some of these discussions about CKD taking place on Connect:
– https://connect.mayoclinic.org/discussion/ckd/
– https://connect.mayoclinic.org/discussion/diet-for-diabetes-and-stage-4-ckd-very-confusing

Here are some resources from Mayo Clinic that I would like to share with you:
– Low-phosphorus diet: Best for Kidney Disease? – https://www.mayoclinic.org/food-and-nutrition/expert-answers/faq-20058408
– Chronic Kidney Disease – https://www.mayoclinic.org/diseases-conditions/chronic-kidney-disease/diagnosis-treatment/drc-20354527

I also have constant burning in my toes/feet. I have been taking gabapentin and Lyrica for months and I have the burning any way unless I take them both. Stem cell? I'm interested in that! I will ask my neurologist this week.
Until I joined this group, I thought I was the only person who has rather advanced neuropathy ... I'm glad I'm not alone. Thank you. Peggy

Thank you, John ! Peggy

Im 55 years old male having ulnar neuropathy. I was a busy participant of this group but recently i didn't participate. By the by my neurological problem in left hand & leg has somewhat reduced. Now i have stopped taking blood thinner Asprin etc Recenbtly I was diagonized with varicose veins in left leg. Burning sensation with pain & tingling. Doctors have adviced surgery. I have also been suffering from fatigue syndrome. Im taking Coenzyme tablets which supports my body to do day -to- day work. I skipped yesterday & the whole day I was very tired. Doctors started with neurological problem & now shifted to varicose veins. Is it safe to undergo surgery? Will the nerves get affected? I wonder why one by one neurological problems in the form of CSVD,Briain shrinkage, Ulnar Neuropathy,, varicose veins. What else? kindly calrify Bros.

Hi @venki welcome back to the group. I wished I had some answers for you and hopefully someone can offer some suggestions. You are much younger than I and you have a lot going on. I'm guessing you've already discussed your thoughts and questions as to what's going on with your doctors. You might want to read through the following discussion on Connect which seems like it could be a possibility for some of your symptoms:

Groups > Just Want to Talk > Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
-- https://connect.mayoclinic.org/discussion/myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-treatments/

I recently found out I had obstructive sleep apnea which does cause fatigue. A lot of people have this condition and are not aware of it. You might want to ask your doctor about it and get tested.

Obstructive Sleep Apnea - Symptoms & Causes
-- https://www.mayoclinic.org/diseases-conditions/obstructive-sleep-apnea/symptoms-causes/syc-20352090

@venki have you decided against surgery for the varicose veins?

John

Hello, Venki. I think you should have a thorough assessment about your fatigue and the CSVD in case it is increasing your risk of stroke. Surgery always has risks and blood clots, pneumonia and strokes are among them. Did your doctor advise you to stop taking aspirin? There are other blood thinners, but you should discuss that with your doctor. Thyroid problems also contribute to fatigue, also asthma, allergies, heart issues, etc. When you have answers about your other health issues, your doctor can determine what your surgical risks could be, and no one on this forum can answer what your specific risk would be. If you come to Mayo, they will assess everything and refer you to other departments and your doctor will consult them as it is a team approach at Mayo, and that usually takes just a few days because they are very efficient.. The neurological problem you have might need clarification with testing because a compression anywhere along a nerve path can produce pain in the same place. You can have ulnar nerve entrapment in your elbow, but thoracic outlet syndrome causes the same pain with the entrapment of the same nerve pathway where it passes in-between the collar bone and rib cage. That is very often missed by doctors, but Mayo can assess that as well. I have TOS and have had it along with carpal tunnel and spinal cord compression all at the same time. I might have some ulnar entrapment in my elbow too. I do physical therapy for TOS with myofascial release that helps a lot, and I had spine surgery at Mayo for cervical stenosis that fixed all the pain I had everywhere in my body except for the TOS. Have you tried any physical therapy? You can use Arnica gel topically to help reduce pain and help with muscle spasms. You could also have inflammation contributing your issues. I have had that from allergies and food allergies and with diet modifications, I have eliminated that. For example, if I eat tomatoes, I have pain in my knuckles; if I avoid tomatoes, my hands don't hurt. I also have to avoid gluten, dairy , and other foods, but it makes a huge difference in how I feel. There are medical foods and supplements like turmeric that help with reducing inflammation. I recommend discussing that with your doctor in case it would conflict with any of your drug prescriptions. Before I figured out all my food allergies and thyroid function, I was pretty fatigued too, but doing all of that helped a lot. My thyroid was affected by the old silver amalgam fillings in my teeth because they release mercury and it affected my thyroid. I had them all removed, and my thyroid function has improved, but I still need thyroid medicine since I don't make enough thyroid hormone on my own. Here is some information of MFR therapy http://www.myofascialrelease.com. Hopefully, there is some useful information here from my experience.