My name is Denise. I just turned 46 last week. Since 2008 I have been suffering from a genetic form of neuropathy that I had confirmed in 2010 by a biopsy. About every 6 months or so I get a really bad spell where I can't stand to be touched, where clothes, etc. for about 2 weeks. Then shortly after that a new symptom appears. So far I have minimal problems with my sphincters in my colon being weak, my lungs are not diffusing, my bladder does not empty out all the way, diarrhea, right side of my heart is weak, trouble swallowing at times (this is my newest symptom), sleep apnea, "popcorn popping" sensation from head to toe (very aggravating and sometimes visible) which causes pain from head to toe as it is constant and everywhere. I also have muscle weakness in my arms and legs. I also have severe swelling from my hips down. I am about 50-60 lbs. overweight and smoke some. I just spent $40,000 in tests at Mayo Clinic to find no answers. I was already in debt about $13,000. I would love a diagnosis, but can barely afford the medicine and drs. I have. I work two jobs, one is cleaning and the other is a secretary. I have two cats that are trained. I have a son who just got engaged and a daughter who just got married. And last, I have been married to my husband for 24 years this year! We have been through so much together. He is having a hard time with this and doesn't understand it and how it affects me. My pain level is about an 8 everyday. I do not take anything for it but gabapentin and that doesn't work very well. Have tried many other drugs with no effect. I guess I am tired and worn out from spend all that money and time and pain to do tests and see drs only for them to shrug and say they have no idea. My question is: Is anyone else going through this?

Welcome Denise D.

Do you know what type of genetic neuropathy you have? Just curious.

Denise, Iam so sorry for your pain and that you have not yet found a diagnosis.
Have you seen a pain management doctor? If you havent or have and still havent gotten an answer look into the diagnosis of RSD Reflex Sympathetic Dystrophy its a neurological disease in which a nerve has been injured which switches on the signal in your brain saying your always in pain, causes swelling, temp changes, hair changes, all kinds of symptoms and yours sounds just like it. I was diagnosed with it after 6 years and seeing 56 doctors in 3 states. Even if you dont know of an injury that could have caused it many get RSD without a reason and if you look up the symptoms you dont need all to have it you could just have a simple 2-3. RSD is a very debilitating disease its rated 26% high in pain the migil pain index. RSD can be limited to one area or like mine is full body and internal. I have pain everyday when i flare I swell, have color changes, spasms, and many more. Really look into this as I know how it is to live a life in pain without an answer and even if it turns not to be RSD dont give up looking for answers. I know how it is for people not to understand or believe, before I was diagnosed some doctors thought I was nuts and I lost half my family for it including my father as he thought I was making it up and at this time I was only 19 hospitalized because I couldnt swallow cause my nerves to shut down so needed a feeding tube, my hands, feet, and knees contracted in with dystonia and spasms so I couldnt walk and was totally bed ridden, my body was so sensitive to touch because of pain my mom couldnt kiss my forehead, a drop of water on my skin made me scream. At this time I was living in Alaska where I grew up but had to be airvaced to ohio for treatment because the RSD had gotten so bad. not everyone gets that bad but for some and most this disease is as anyone can put it a pain in our lives.

I do hope you find an answer and there is and RSD/CRPS forum on this website if you want to ask more questions about your pain many there can help.

Samantha

Did Mayo tell you to stop smoking? It is known to make neuropathy worse. I know its hard to do (lung cancer survivor here and am on O2 for COPD) but it sounds like you might need to try anything you can to find some relief. I hope you find some help, have you tried the supplements that are recommended here?

If your lungs are not diffusing and you have right sided heart issues you really need to quit for that reason as well.

judi