Neuropathy Community Group
WELCOME to the Neuropathy group... For all those who have all types of Nerve Damage and PAIN! A GREAT PAIN resource area! Over 100 photos and 25 research topics on specific pain issues.
Hello everyone, I was just diagnosed with neuropathy. It was the weirdest most uncommon thing that started with vulvodynia. I was having excruciating pelvic pain to the point where I was advised to go to the ER twice. It was like if (I am a female) a male were to have an erection that wouldn't go away plus a persistent urge to urinate while someone is pressing on your bladder plus if someone were to take a rope, put it between your legs and just pull up an torture you. This went on with absolutely NO relief whatsoever for a solid two weeks like every pain you could feel down there happening to their fullest extent all at once. All of my tests came back negative and trust me they tested for EVERYTHING; a total of six doctors checked me out. I even had a doctor imply that I was a hypochondriac (sp?) and was really mean and rude. I had driven an hour and a half to see her and left the office crying. I felt at that point that no one was going to ever help me. It had been a month at this point with no more than 30 minutes of relief; and by releif I mean like a 5 on a pain scale instead of a 10. Instead of seeing specialists I decided to go to my primary. He was the most understanding person in the world and let me tell him the most in depth details that no other doctor would even listen to. They would ususally just hear what I said and pretend like I didn't say it because some of the sensation was a really uncomfortable painuful arousal feeling. Some people (like nurses) even got so uncomfortable they seemed angry with me. However this doctor should get a f*cking medal, he even thanked me for being so open with my descriptions. He had diagnosed me with vulvodynia as well as neuropathy. Just before I had gone to his office I started experiencing the pain in my hands and feet. The most likely cause was that I had skipped two days on my meds, one of which was gabapentin (as an off- label use for OCD) which as I'm sure you know can help treat neuropathy. He told me to still take it but at a higher dose as I was on the lowest end of it. He even wrote a letter to my university so that I could drop the summer class I was taking past the date when you are allowed to. I was absolutely failing the class and not attending. I tried once since the pain started but had to leave early because I felt like I was going to explode. As of right now the pain is in my pelvic region, hands, feet, legs, arms, and now face and neck. I'm not just dealing with the pain but am absolutely terrified of it showing up somewhere else. Just yesterday I tried to fill my Xanax perscription and was accused of being a drug addict because I was out of them 19 days early out of the six months of refills. I was not abusing them, my psyciatrist had told me I could go to a higher dose and my primary said that I could take it daily because it helped me. My mom had to go to the pharmacy and verify what I told them over the phone. I hope soon to find a treatment that works for me. I absolutely cannot take the pain and have had to numb myself mentally. I am supposed to be moving out in a week (was just approved for the apartment) and starting a class for the second half of summer. I absolutely REFUSE to let this effect those important things in my life. As of right now I hope that jpining an online support group will help some. Though I would never wish this pain on anyone, it's nice to know that I am not alone.
You sound really determined not to let your pain and condition affect your life as much as possible. Very positive and keep going with it. Don't forget to pace yourself. :)
I have terrible pain after sex not sure if that's similar. But if I've been given too many orgasms it causes the most intense pain. All my gut muscles cramp like labor pains for an hour or two I will have several bouts of diarrhea and I'll just lie down and try to relax.
But here's my story of what had helped me. And sorry I copied from another response I left for another sufferer because its a lot of info.
I'm 43 and have had small fiber neuropathy and many other conditions for 11 years. I too only have so far I can walk/stand... I used to be completely miserable, mad at the world and ready to die. I used to take lots of neurontin up to 4000 mg... The longer your on it and the more you take the more you need. I once thought I wouldn't be able to make it through the night without neurontin. But after years of trying everything possible I've stumbled upon more relief than a doctor ever gave me. It started with my GI doc that told me if I ever wanted a happy unbloated belly I needed to try the FODMAP diet. Giving up gluten seemed difficult but I felt better within 24 hours so I knew it was right for me. Giving up fake sugars and dyes reduced my pin pricks from over 800 a day to about 20-50 a day. But my overall pain, burning and limited walking didn't improve. I used to toss and turn all night from terrible aching in my spine and hips but I found several things to help me sleep. First I started to cut back on my neurontin cause I was just so exhausted all the time. I cut back slowly taking less and less and one night I somehow fell asleep without taking my neurontin and when I woke in the morning I was shocked that I slept better than I had in years. I never took another. I had about 3-4 days of insane paIn my over but after all pain level dropped substantially. It was crazy that although neurontin helped my nerve pain it also caused my overall pain to be worse.
My next improvement came when I started to consume flax oil and flex seeds (1-2 T of each added to a shake) I did it because it's a treatment for cancer (my dad passed last year, look up Gerswin cancer diet) and it helped reduce that dry achy pain in my spine, Then I got an essential oil diffuser in my bed room becaus thieves oil protects from illness (trying not to get sick cause I work part time in the school system) but it helped me sleep as well. Then on a bet with my daughter who is vegetarian I gave up meat and sugar to get her to give up sugar and in 24 hours I felt so much better again.... Its ridiculous how much inflammation was in my body. It so happened that I also didn't eat dairy in those 24 hours and a few days later I splurged and ate dairy and found myself using my cane again. Finally it just happened that about a week later I stumbled upon the movie What the Health on Netflix and that just sealed the deal. It explains how our diet is causing / exacerbating all the autoimmune conditions that many Americans are suffering from.
So it's a little difficult to eat a gluten free vegan diet but it's helped more than any pill a doctor has given me. I wouldn't suggest to go the route I did. Actually just the opposite, start the plant based diet and you'll find that you need fewer and fewer pills. So it's easier to get off them then sending your body through withdrawal like I did.
Two other movies that are good on Netflix are Fat, Sick and nearly Dead. And Forks over Knives.
I wish you the best of luck it sucks to be miserable all the time.
Wow, what a story. You have done incredibly well. It's not easy getting off medication. Taken me over 4 years and I'm nearly there.
I agree with a lot of what you have said. Inflammation is a huge thing with my nerve and body. I find if I eat certain foods I get so much more pain. Eg too much caffeine, alcohol, for me too much fibre. I have been vegan for nearly 2 years. I do it because of animals. But I did find as soon as I stopped eating all dairy and eggs my body wasn't so bloated and congested etc. I felt cleaner. Everyone different though of course. Interesting though that I've never missed eating/drinking animals products.
Only thing I can say, not because of a vegan diet, is that most of us here seem to take medications for a long time. It is worth getting your vitamin levels checked when you have bloods done. Mine in B12, vit D etc were extremely low. I checked with 2 drs and they both confirmed not because of my diet but because of the medications, it stops my body absorbing the nutrients from food. Fascinating I thought.
The flax oil is interesting. I might give that a go actually. :)