Living with Neuropathy - Welcome to the group

I've had neuropathy for many years. It has gotten progressively worse. There are times it unbearable. I'm taking 1800mg gabapentin now. My pain management Dr got mad that I went to neurologist and I'm tapering off tramadol. I'm trying to get tramadol way down my neurologist wants to start me on Cymbalta. As all of you know the pain "beats" you up mentally, emotionally and physically. I am trying to figure out if there is anything I can do. I use lidocaine patches but they burn sometimes. I am trying CBD . I am open to any suggestions and any help help at all. Thank you for listening. Cathy

Hi Cathy @mcd123, Welcome to Connect. Sorry to hear your neuropathy symptoms have gotten worse and the pain management doctor and your neurologist are not on the same page. You might be interested in the following discussions where members have shared what helps them.

-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/
-- Eliminating Foods for Neuropathy pain: https://connect.mayoclinic.org/discussion/neuropathy-pain-1/

@artscaping, @avmcbellar and other members may have some suggestions for you. Also the Foundation for Peripheral Neuropathy has some complementary and integrative therapies you might find helpful here: https://www.foundationforpn.org/living-well/integrative-therapies/

Have you tried any alternative treatments to see if they might help with your neuropathy pain?

Hi @mcd123 sorry to hear of the unbearable pain you are experiencing. Your doctor should be understanding and not be upset you tried to seek help with a neurologist . If anything else it is a signal for him to further help you with your pain. I was left with neuropathy in error as a result of my last surgical repair of my ruptured AVM(arteriovenous malformation). The surgeons initially at the time of my AVM had told my family I was not expected to live. It is going on 5 years now that I have been learning to help myself. As I had feared, I knew more than the team of physicians did at that time of my AVM. They were not helpful with my recovery because they did not have answers for me. I learned through trial and error. I do not take any oral medications because I do not want to be guessing the causes for any medical issues. What I have found helpful in decreasing my neuropathy pain was eating a well balanced low carbohydrate diet and exercising. I have been a pescatarian for over 40 years. I enjoy making my foods from scratch. That way I can control the ingredients. I mainly eat and have eaten all my life a Mediterranean diet. Supplements other members found to be helpful I did not. The majority of my nutrients come from the foods I eat. I believe that is best for me. As a teenager I had researched my diet( yes, I hung out at the local library back then, lol) for any adjustments. Throughout my life I never had a deficiency or became anemic. Many people are not aware that there are many causes for anemia and not just an iron deficiency.
I can say that I certainly feel better today through the discovery of my findings. Years ago I had a bitter taste in my mouth after taking a multiple vitamin which I had taken occasionally before my AVM without any problems. It became worse after the 4th day so I stopped. I even called the manufacturer after no replies from the Mayo members for suggestions. The manufacturer had no clue either but I eventually figured it out. Now I can tolerate the same multiple vitamin without the bitter taste. I don’t have experiences with medications but if you have other questions in regards to neuropathy or AVMs I will be happy to answer through my experiences. I wish you well in finding answers to help you with your pain.

I asked my pain doctor for help with the pain from my lichen planus and rosacea (both are all over my body, extremely painful, affecting my eyesight, mouth, ears, everything including feet. He said he didn’t know anything about lichen planus or rosacea so couldn’t help me with the pain. He is currently treating me for severe neuropathy. I expect and am scared to death to get the letter he is firing me as a patient. I cannot even stand long enough to brush my teeth without a severe flare. My tips of fingers are red and inflamed and feel like razor blades are cutting into them at all times. Hearing is almost gone from my left ear. Is there anything I can do? I wanted to go over the AMA/CDC document with him that Faithwalker007 supplied us but he brought a woman in the room and made sure she typed every word I said so we could never discuss guidelines for pain mgt) He never in 7 years has had anyone in the room with us. Light hurts my eyes and I have to wear sunglasses and put gel drops in my eyes every hour (not sure if it’s from the new rosacea or lichen planus). My whole body is red, on fire, and itchy. My thoughts are not Christian-like right now.

Just wanted to offer some information on something that I have found helps me get a better night's sleep. I have neuropathy issues and very bad restless legs. Each has their own issues that contribute to my getting very little sleep at night. I did some research and discovered weighted blanket. They seemed to have given some people a better nights sleep so I invested in one. So glad I did.. Been using it about a month and I am finally getting a solid night's sleep.of 6-8 hours. Before it was 3-4 hors a night. This may be the wrong feed for this information but I am so happy to finally get some rest I wanted to share in hopes it might help someone else.

Has anyone tried any of the Cannabis products to treat chronic neuropathic pain?

@kenc There are a couple of discussions you might find helpful where members are discussion using medical marijuana, CBD, etc...

-- Medical marijuana for neuropathy: https://connect.mayoclinic.org/discussion/medical-marijuana-3/
-- CBD oil for Neuropathy: https://connect.mayoclinic.org/discussion/cbd-oil-for-neuropathy/

@artscaping may have some suggestions if you have any specific questions on Cannabis products for neuropathic pain.

Thank you

Has anyone reported good results with acupuncture? At night, I have 2 toes on my,left foot that cause incredible pain. I am just desperate to try to find relief. Also any good reports from CBD or medical marijuana? Thank you for your prompt response yesterday. Much appreciated. Cathy

@mcd123, I personally have not tried acupuncture. My mother believed it helped her with her painful rheumatoid arthritis and there are a few discussions you might want to read to learn what other members experiences have been.

-- acupuncture or chiropractor for peripheral neuropathy: https://connect.mayoclinic.org/discussion/acupuncture-or-chiropractor-for-peripheral-neuropathy/
-- Acupuncture helpful for peripheral neuropathy (PN)?: https://connect.mayoclinic.org/discussion/acupuncture-helpful-for-pn/
-- Dry Needling or acupuncture: https://connect.mayoclinic.org/discussion/dry-needling-or-acupuncture/