Member Neuropathy Journey Stories: What's Yours?

I hear you. Well, I am in the middle of my journey with Neuropathy or SFN. I am happy for not having pain to date so gabapentin will probably not help. Right?

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Hi John...and everyone!
I am 46 yrs old and have been dealing with pain, syncope, cardiac issues, brain fog, numbness, PAIN and confusing test results for almost 20 years. I have been a competitive horse back rider since I was a teenager and am still trying to clinge to that in a very diminished capacity. I have a teenage daughter who, thankfully, has had no problems or signs of autoimmune or genetic disorders.
I have been wrongly diagnosed with MS, rheumatoid arthritis, psychiatric issues, PAF (pure autonomic failure) and others. I can not think of a test I have not had and I have been hospitalized numerous times, usually to the cardiac unit, b/c of syncope or uncontrollable labile BP. I was a supervisor for a major airline when I first started having issues. I would be on my feet for hours running b/t gates and putting out fires. I loved my job. I began having pain in my back and in my hips. It went from annoying to debilitating to completely crippling. I was told I had rheumatoid arthritis but the hip xrays looked pristine. They did steroid injections in my hips anyway and I did experience temporary relief. The doctors concluded that my body was misinterpreting some signal as a signal of pain. Since those first issues my list of problems has grown exponentially. The cardiac issues caused me to begin passing out multiple times a day. All the heart studies showed my heart itself is healthy, it was the nerves controlling the heart that are messed up. Nothing can be done but taking drugs to help regulate it. Sometimes it is meds for high blood pressure, other times my pressure will be dangerously low. Super fun☹
I developed a severe cough that did not respond to any meds. I was tested for lung cancer, severe exercise induced asthma, and a long list of other pulmonary issues. Again, my lungs looked great but that did not stop them from putting me on steroids for 5 months. I did not experience any improvement in my breathing but i did pack on almost 40 lbs...great for my riding as well as my general happiness. So lungs and heart are both healthy but both receive messed up messages from the brain so they do not function properly.
I was diagnosed with celiac disease when i was in my mid 20s (through biopsy and flattened villi) so I always attributed my stomach/digestive issues to that, even though I have been completely gf for 20 years. I now know that these issues are also b/c of the issues with the messages from my brain, not the actual digestive system.
I am guessing you all see the pattern, and some are probably familiar with the same issues. I had one neurologist say I had MS but the LP said he was wrong. I saw specialists at Mayo, Cleveland Clinic and UCLA but was never able to be diagnosed.
While all of this has been happening I have continued to ride and compete. There are periods of time when riding is not possible. There are also times when I know I shouldn't be jumping b/c of dizziness or numbness but I push through whenever I can. I had to stop working 16 years ago. 3 years ago I took some time away from training. At times I sleep almost all day. Fatigue and brain fog are always an issue. I could barely breath and I was not even close to being able to train. I moved to CO, partially b/c they have excellent doctors and partially b/c heat makes me 100 times more miserable so Northern Colorado is a great climate for me. I started seeing an excellent neurologist and after extensive testing he used blood work and punch biopsies to confirm I have a rare, fairly new, type of small fiber polyneuropathy.
He started me on a new med in addition to the lyrica, Cymbalta and heart meds I was already on and set me up for Solu-Medrol infusions. I did a 5 day course of 1000mg a day. It was brutal. I guess most people become hyper and sleepless but I did not react like that at all. It knocked my blood sugars out of whack and i was basically asleep the entire 5 days. I finished 2 weeks ago and an still in bed 90% of the time, at least I am awake now! Sadly, instead of improving, my neuropathy has gotten much worse. My feet feel completely frozen and painfully all the time. I am having involuntary twich/trembling in my pinkie fingers and my left leg if i am sitting with my toe pointed and my heel off the floor. My balance is off quite a bit more then usual and lets just say I would never pass a dui test even on a good balance day! I am hoping that as the steroids clear my system I will begin to feel progressively better again but I don't know.
It is weird, I have been waiting for an accurate diagnosis for 20 years. I have been in and out of hospitals and been poked and prodded in any and every way possible but now that I have a diagnosis I feel even more uncertian then ever.
I feel like my neuro is happy he was able to get an answer but now I am left without any way to get answers to all the new questions I have. When he told me my teat results I was listening to all the treatment options, history of the newly found antigen that they can test for (which was why I was never diagnosed before) etc. I was hopeful that Solu-Medrol would have a huge, positive affect on my life and was also not prepared with all the questions that have since come to me.
My neuro is a very busy man and his partner suddenly gave notice and is moving out of state. I know he specializes in odd ball cases like mine and is incredibly busy BUT, I was not able to get another appt until July. I have sent an email, which is a way he does correspond, but have not heard back yet and I find myself asking the "big" (probably unanswerable) questions. How quickly should I expect my mobility to decline? What is the likelihood that one of the misfiring nerves will cause a fatal episode with my heart or lungs? What can I be doing to minimize these issues and extend my current lifestyle?
I stumbled onto this site by accident but after reading numerous posts I am really glad I did. It is great to feel like there are other people out there who understand this crazy life and might have some insight on how to best navigate it. I look forward to hearing everyones suggestions and just reading everyones stories, struggles and successes b/c most people will never really be able to relate to the lives we live. I try hard to minimize my issues to everyone but a few people very close to me. I don't want to be pitied or treated differently. This is a great place to be able to just be honest with my thoughts and feelings so thank you!!
I have seen numerous people have mentioned trying medical Marijuana. In CO it is legal and readily available. I have tried 4 or 5 different edibles...can't smoke since I still cough, but even the ones that are aimed at energy and pain relief have left me knocked out for a full day. If anyone has suggestions on varieties or combos that have helped with pain but not made them tired I would be grateful for ideas. Fatigue is one issue that plagues me 24/7 so the last thing i want is to be more tired or foggy!
I am looking forward to learning from all of you and sharing our experiences.
Thanks,
Megan

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@bogibus Back a couple of decades I lived in OK.. My wife did a lot of barrel racing and such. She and her "horse loving friends" had all kinds of lower back pain from the constant pounding they would get in the Western Saddles ... When I had an injury and had to have a spinal fusion, we had a party with a group of those with major back problems as we were all getting older and dealing with youthful recreation.. Have you had a really good back check-up as those nerves as so prone to problems... Ken

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Yup, gabapentin only helps for neuropathic pain...does zero for numbness, nor does any other pain medicine.

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@ken82 hi. I actually have a pretty good "relationship" with both my ortho and back guy. Western saddles definitely give the back more of a pounding then english saddles simply b/c of the style of riding but hitting the ground from falling does not do any of us any favors! Lol

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Hi John and @ea1, in fact, some think Gabapentin can cause some numbness. It seems that way to me! It does help pain, kind of dulls it but like with all meds, it can have unwanted side effects of which I have most! I'm special! LOL!! Warmest wishes, Sunnyflower

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Hi Chris, your post was beautifully said!!! @ea1, welcome to Connect! I know you will find the support, understanding, compassion, empathy, wealth of information, inspiration and friends that I have here on the blog.
To go along with what Chris was saying, most of us suffer brutal and often unrelenting pain. It's amazing how we keep pushing through day after day.
I hope and pray your journey is more than tolerable. Keep reaching out and we'll all try to be there for you.
Many blessings and prayers, Sunnyflower

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Hi Sunny, gabapentin can cause numbness? that’s something I’ve never heard or read, it would be great if we could all back up our statements with some valid source since so many of us take it, although I know that is not always possible. I thought your previous statement about RAla being superior was a fallacy was also interesting, it would be good to know why your dr. thought this as it is less expensive. 😁 Helen

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Hi Sunny, gabapentin can cause numbness? that’s something I’ve never heard or read, it would be great if we could all back up our statements with some valid source since so many of us take it, although I know that is not always possible. I thought your previous statement about RAla being superior was a fallacy was also interesting, it would be good to know why your dr. thought this as it is less expensive. 😁 Helen

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