Member Neuropathy Journey Stories: What's Yours?

@bethunger
Beth, you certainly convey a wistful melancholy that has accompanied your journey. You feel you have lost much to this illness. You no longer can take your bike rides, do things you'd like to do with your husband and son or enjoy the work you used to be able to do, helping others with their parenting skills. You have, I think, eloquently captured the essence of what neuropathy does to a person's life. It changes everything, often relatively quickly (much like covid has changed the world in such unexpected and dramatic fashion).

As far as your pain, how well does the pain pump help? Are you still able to enjoy life to some extent, or does pain now rule your life? You talk about "before and after". It can make us sad to remember all that we once had in life but do no longer. The best thing (if the pain is not dominating everything) is to take joy from new or different things. Whatever can keep your spirits up, that is the key. Have you been able to find such things? I appreciate your story, thank-you for sharing it. Best, Hank

Thanks sunny flower, I didn’t know that. They tried tramadol on me many years ago and I did not like it the way it made me feel. I think there’s an extended release version they tried also - made me feel like Alice in wonderland through the looking glass down the tunnel kind of feeling. I cannot take epinephrine (Sudafed?) - I remember that from years ago, when they gave it for allergies otc . It made me feel like I had something crawling on me. So maybe that has something to do with my dislike of tramadol. I am taking morphine and Lyrica now for my back and what I thought was neuropathy. I just had lumbar fusion surgery and my neuropathy symptoms seem to have disappeared! Thank you Mayo, for the testing done before hand.

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

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

Hi @bogibus, I would like to add my welcome to Connect along with @jesfactsmon and other members. I know it can be a struggle trying to get a diagnosis and it sounds like you have been to quite a few major health facilities. You mentioned being a competitor in horse riding and jumping. @jenniferhunter may have some thoughts on your hip and back pain.

Have you ever had any injuries from your competitive riding and jumping that may be the source of your hip and back pain?

@jesfactsmon and @johnbishop thanks for the welcome and interest.
As far as injuries which could have contributed to some of my issues, there have been plenty of "epic wrecks" but when the hip problems began they came out of nowhere and progressed very quickly. I also assumed that they were probably from years of "abuse and insults" to my body but the xrays and scans all showed that my hips looked perfect. No signs of arthritis or any types of injury related damage. That was the first time a doctor diagnosed anything I was dealing with as nerve related.
As far as brain fog/dizziness/fatigue being possible side effects of lyrica (btw, 150 mg twice a day) and/or Cymbalta (60 mg once a day), i am sure they add to it although i had terrible bouts of fatigue before starting lyrica or cymbalta. It is although difficult to trace the correlation exactly since I was not diagnosed with Celiac disease until i was in my mid 20s and, at the time, it had progressed to the point that I was very sick so the doctors felt that it was probably the reason I was having so many issues and that they would resolve as my body healed.
I did mention all the different issues I have had over the years....I would still be typing! Lol but without lyrica i have terrible spasms, particularly in my neck. I was getting botox injections to release the muscles enough to allow to at least hold my head straight until lyrica was started and it has been a miracle med for me. Without lyrica my leg jumps and twitches constantly. Sleep is virtually impossible no matter how exhausted i am and the neck spasms are constant so that is the one med i could never do without. Cymbalta us the low dose prescribed to help with pain. I have questioned how much it helps in the past and gone off of it but then I am plagued by awful, debilitating "brain and spinal zaps" Not sure how else to describe it.
As for info about this type of neuropathy. The technical name is Small Fiber Polyneuropathy. I guess in 2003 a doctor or scientist discovered a specific type of neuropathy. He (or a team) began researching and did a trial with about 400 people that had the specific symptoms they were looking at. If that group well over a 1/3 were found to have SFPN caused by diabetes, another portuon of about the same size had the neuropathy issues as a result of another underlying condition or illness. There was a very small portion that had the issues as a result of an autoimmune disease that was due to the over production of a specific autoantibody. It was not until 2017 that they were able to identify the markers and then develop a way to test for it. The test that "proved" my diagnosis was the TS-HDS Autoantibody test. The result was "abnormal" because my IgM vs TS-HDS was 21,000[H] and normal is <10,000
The punch biopsy was ordered to confirm the diagnosis and my results for that were "abnormal sweat gland nerve fiber density with abnormal intrqepidermal nerve fiber density" All 3 areas tested showed, "nerve fiber density is significantly decreased" with values of 4.3 vs norm of >7.0, 2.8 vs norm of >5.7 and 1.3 vs norm of >3.0. I guess those values are already kind of crummy and they will continue to decline with time. Treatments are aimed at trying to slow the process if possible and trying to minimize the effects.
This form attacks the nerves controlling all of my parasympathetic systems so basically everybone of my body's functions goes haywire from time to time.
Hope that you didn't fall asleep reading that!! Anyway, @jesfactsmon, you mentioned something about options you and your wife have found that help with energy. I would love any info you could share!!! I am so tired of being tired!
I hope that answered all your questions. I made notes to try and get to everything. I am really glad I found this site and plan on being an active member.
Also, I would love to get in touch with @jenniferhunter. I am accepting that jumpers is probably not the best discipline for me anymore and hunters is the direction I am looking to head
Thanks so much and look forward to hearing from everyone soon.
Megan