Living with Neuropathy - Welcome to the group

Hi, @pfbacon, and welcome to Mayo Clinic Connect. We have a group on Connect dedicated to Neuropathy, so I merged your post here with one of the large discussions in that group so you can get to know some of the members talking about neuropathy.

I'm really sorry to hear you are having tortuous pain. How has your pain been treated so far, @pfbacon?

Hi @pfbacon, I would like to add my welcome along with @lisalucier and other Connect members. I have small fiber peripheral neuropathy but only have the numbness and tingling so I'm lucky in that respect. I shared my neuropathy story and journey in an earlier post here on Connect. You can read more here if you like:
-- https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

What type of neuropathy do you have? Are you able to share any more details of your diagnosis and any treatments that were suggested that might help?

John

Thanks, Becki. My dad had a head injury (skull fracture) when he was in his early 60's and if affected his ability to reason. He spent 2 and a half months in the hospital back then, and was never the same. My elderly mom (still living) and my dad had promised each other not to go to nursing homes and they were in denial about their needs. I hired caregivers when I could find people who were willing to do the job and I traded off with them. We couldn't go through an agency because they didn't cover the rural area and my parents were not willing to pay for that, so I had to step in. I don't regret that, and I would do it again because it's the right thing to do. The stress of all this probably caused my spine to get worse faster, and I had to get a lift to help my dad transfer. I did everything a nursing home would do, and I had to advocate for him during his hospitalizations and rehab stays. My dad really was worried about me and the pain I was in, and he often thanked me for taking care of him. I had made a promise to him that I would find a surgeon to help me with my spine, and I helped him decide to have a feeding tube placed. His head injury years earlier caused an issue with swallowing, and he had to relearn it, but as he aged, he was not doing it well and getting aspiration pneumonia. I had more time to talk to my dad at the end of his life and I was able to talk to him about my fear of surgery like I was a little girl again and when I did that, I put my arms around him and cried. He was surprised as he perceived me as someone with strength, since I was always working with his doctors on his behalf, and I had a background in biology and understood everything. He's been gone 2 years and my mom is doing well on her own. We got her 2 small dogs from a shelter for company. She agreed to stay in her wheelchair and not try to walk unless someone is with her. I check on her a lot and take her out to appointments, shopping, etc, and she is happy and doesn't want a caregiver now.

When you have been someone's caregiver until the end, and seen the difficulty in someone living with little quality of life, you realize that it would be selfish to expect them to keep living when they've told you they are ready to quit. I grieved a lot that last month, but I was strong through everything afterward. I had a lot to plan for his service and dinner (which we did at their home) and I was able to comfort friends and family who were sad. The service was a video documentary I made about my dad's life with video I had recorded of my parents speaking about family history a few years earlier. I acted as a host introducing each segment which we recorded along a river on a path full of beautiful oak trees. It was very healing for me to do that and I felt connected to my dad. The end of the documentary was a song called, "Who knows were the time goes?" and it was a montage of photos of my dad from infancy until a few weeks before he passed. The song by itself is very moving. I think doing all this prepared me to embrace my own health journey at Mayo, and I got a time for rest, and time for recovery. I did get some post surgery complaints when my mom thought I should be well enough after my surgery to start driving her to appointments, and I had to hold her off with my surgeon's advice for awhile, but that goes with the territory. Though all of this, I've learned a lot about living, how to advocate for my health, and embrace a positive future.

Hi Becky, At least you have some information now. Are you going to explore the spine issues further? An MRI will show what an X-ray cannot. Did your neurologist suggest it? I would suggest mapping out your pain on a dermatome map (search online for one) and track it so you will know how it changes over time. I did this after an epidural injection in my neck and saw how my spine issues progressed over 6 months. Unfortunately, that worked against me with the surgeons who couldn't connect the symptoms to the imaging and the symptoms kept getting bigger, but it also weeded them out as job candidates, and that's how I came to Mayo. The nerve roots follow the dermatome maps as to where the pain will be from a particular level. Pain cause by compression of the spinal cord does not follow a dermatome map, and that is what confused a lot of surgeons in my case when I had pain in every dermatome on my body from cord compression at C5 C6. You can also have a mix of both if you have compression in multiple areas, and also in peripheral places like, carpal tunnel, etc. If you are considering a spine specialist at Mayo at some time in the future, just ask, and I will share the specifics on my surgeon. You might be up against doctors who just want to do injections to your spine. There are real serious risks to those and the effect is temporary usually. I had a bad reaction and stabbing pains that went on for weeks because the injected fluid increased pressure when it had no place to go and I refused to do that again. Some doctors put off surgery for awhile with injections. Remember that the choices are yours in who you see and what treatment you think is best for you, and the doctors are there to give you an informed choice of what they can do to help. Here is a link to medical literature I found about cervical stenosis causing leg pain from spinal cord compression. This is why I often jump in to help when I see other patients that may have this issue. I was misdiagnosed for 3 years before I came to Mayo and I brought this article with me to my doctors there. This is what my case was like, and it explains how this type of spine problem is often misunderstood. http://europepmc.org/articles/PMC3111492/reload=0

Thank you. PFB

Thank you. I took 1 gabapentin a day for the first year; a few months ago it started getting much worse quickly, my doctor increased gaba gradually to 9 a day, he said it's the max, each increase worked for awhile then it got worse, he added 75mg Lyrica at night, increased to 3 at night along with 2 aspirin every morning as needed, and 1/2 of 1 tramadol in the afternoon if needed (it doesn't make me sleepy). He sent me to Neurologist, we did blood tests and MRI, I will do the electric needles test on Tuesday, she will try to figure out what type I have and what to do. I have been hypoglycemic and living on the medical diet for it since 1987, so far I'm not diabetic. Do any of you have anything similar? A friend of mine, a nurse who suffers from viruses said that there are European and American doctors practicing in Mexico because of less government interference/paperwork and they might have medicines that U.S. doctors don't have (if drug companies can't make high profits on a medicine, they don't make it). Have you been to a foreign country for help? Tramadol is getting harder for me to get here, it has been put on the government's 'controlled substance' list, in fact, pharmacists have told me that Lyrica is also on the 'controlled' list - they call it a pain killer - I correct them, my doctor said it's an anti-seizure medication. Thank you! Peggy

@jenniferhunter Thank you so much for the information. I, unfortunately, do not live close to a Mayo Clinic hospital. The closest would be in Cleveland, Ohio about three hours away. I am hopeful that my docs will figure this out. I will start mapping my pain and neuropathy for my next appointment. The neuropathy pain has been intense in my left hand this week. Not sleeping well due to the pain.

Thanks again!

Best regards,
Becki

To all in the Living with Neuropathy group and the various discussions/conversations I’m amazed at how big this has grown to be! I first discovered this in July ‘18 and now there are over 40 screens of info & posts on it! I’ve learned there are many kinds of neuropathy and just as many kinds of treatment. I hope that everyone suffering from some kind of neuropathy will get an accurate diagnosis and appropriate treatment to alleviate the suffering. My own neuropathy story started with type1 diabetes and peripheral neuropathy causing numb, tingly, burning, throbbing pain in my hands and autonomic neuropathy causing gastroparesis that involved nausea, vomiting, stomach cramps, constipation and diarrhea. I participated in a study at the International Diabetes Center where a drug was being tested to treat peripheral neuropathy and diabetic nerve pain (2002 - 2005). In 2002 I was hospitalized and diagnosed with gastroparesis. It was treated with metochlopramide (brand name Reglan) which in my case caused drug induced tardive dyskinesia. That turned into a three year nightmare that I won’t get into now. It was eventually diagnosed and I was taken off the med. The tardive dyskinesia is mostly resolved. I’ve been put on a low dose of antibiotic to take as needed because of its stomach motility properties and I limit high fiber foods. The gastroparesis is manageable. In 2005 I had a pancreas transplant. I did not end up insulin independent but I was able to improve &/or reverse some of the complications of diabetes such as hypoglycemia unawareness, retinopathy, nephropathy and neuropathy with just a fraction of the insulin. The diabetes became manageable and I had a normal HbA1c for the first time during my diabetes. Now I’m nearly 13 years post pancreas transplant. Two years ago my kidney function (which had been relatively stable for 11 years) began to decline. I met criteria for pretransplant evaluation and relisting for kidney transplant. I’ve had an annual pretransplant review in ‘17 & ‘18. Over the past two years I’ve had terrible cramps in my feet and legs that comes out of nowhere in the evenings and middle of the night. It does not seem to be related to blood sugar, electrolytes or other kidney labs; temperature; seasons, physical activity or anything else. I didn’t relate it to any kind of neuropathy. I complained about it to my nephrologist, my endocrinologist and even my podiatrist. No answers. At my recent annual visit to Mayo I mentioned the things I’d read about statins on this site. I was told to try cutting my rosuvastatin dose in half. I will see if that helps. One other thing is that I’ve been dealing with planters warts on my feet for the past 6 months. The recommended self treatment (soak, scrape, OTC product and tape) was not helping and the warts were actually spreading. I went to podiatry about 4 months ago. The podiatry treatment (freezing & acid) has been torture. It finally stops hurting just in time for follow up and more treatment! I was afraid that the treatment was causing a new neuropathy. No one seems to think so and I’ve been advised to inquire about a different wart treatment that will be more tolerable/effective. After reading about a connection between gout and kidney disease I wondered if my feet & leg pain was gout. The Mayo people assured me that gout involves joint pain and that I don’t have that! So I will reduce the rosuvastatin and see if that makes a difference and hope that podiatry can resolve the warts.

Cleveland Clinic is supposed to be good too. I'm 5 hours away by car from Mayo myself, but it was worth the drive through some really beautiful country and since everything gets done in a few days, I didn't have to stay there long. You can try some arnica gel topically. It does help pain and muscle spasms. I was putting that on my neck to stop spasms. I'll still be here if you wanted to discuss anything. I recommend looking up and reading any medical literature authored by a doctor you want to see, and check that their area of interest is close to what you need, so they should have had lots of similar procedures in anything that is offered to you. Hang in there. I know it's difficult and I hope you have some answers soon. You can also check Becker's Spine Review for info on surgeons around the country.

Omigosh, John - you have been through quite an ordeal, I hope they find answers for you soon. I had a plantars wart about 35 years ago, a doctor applied the acid every week or so and I remember it as you describe: the burning subsided just before the next appointment. It was awful and you have all my sympathy. I get muscle cramps too, they wake me up during the night. Doing stretches several times a day helps, when I remember to do them I don't have any cramps. I tried all the medicines for leg cramps, they didn't help, calcium and magnesium supplements actually made it worse; I added more water but I already drink enough so it didn't help. Massage helps too, I try to do that once a month but I average more like once every 6 months. P)eggy