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Member Neuropathy Journey Stories: What's Yours?
This discussion was created as a place for members to share their journey with neuropathy. This will allow members to easily learn from each other what has helped them and hopefully help new members avoid some of the painful and difficult struggles some of us have faced. The following is a suggested outline for sharing your story that would be helpful for other members for comparison to their own neuropathy story.
— When did your neuropathy start? What were the symptoms? When and how was it diagnosed?
— What treatments or medications have you tried?
— What side effects have you had, if any?
Optional:
— What would you tell your best friend if they told you they had neuropathy?
— What activities have you had to give up because of neuropathy? What do you instead?
— How has your life changed socially? at work? at home?
What's your neuropathy story?
Note: If you want to ask a question for another member who has posted their neuropathy story here in this discussion, be sure to add their @membername in your post, for example @johnbishop. Your question may already be discussed in other neuropathy discussions. Be sure to check here first: https://connect.mayoclinic.org/group/neuropathy/ That way this discussion can be reserved for member neuropathy stories and hopefully make it easier to read and find similar symptoms to your own.
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Hi John
Your detailed input is highly appreciated. I will definitely read your detailed discussion you eluded to.
Numbness medication or supplements - interesting that my neurologist was ready to prescribe a medication which I declined to date due to my mild conditions so far. Thanks for letting me know about you experience with drugs and creams to control the numbness.
I will see my GP in few weeks to discuss her opinion and new routine blood tests. Will keep you updated on my next neurologist appointment.
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1 ReactionThanks Hank for the kind words. You asked about the pain pump and how well it works. It does help, but like all of the medications it doesn't take it all away. I suspect that like many patients with neuropathy, we are not given the luxury of forgetting the pain entirely.
However, I do enjoy some things now. I enjoy painting despite how amateurish the end result is. I have a little dog that we rescued from our local pound. I enjoy his company. He is deaf and blind but totally in love with life. He exudes joy. He inspires me and keeps me company during the day. I think one of the things I am learning, is to try and be present. To totally attend to whatever is happening at the time. To let myself just be sets off a great deal of guilt. I am trying to recognize how that response isn't helpful. I am hopeful that my husband and I will be able to enjoy some long weekends or other driving trips. I hope you are able to enjoy your life, you sound like you are doing better at that than I am. I am going to keep that guidance in mind; to try and keep my spirits up. It is very good advice, thank you.
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5 ReactionsHi 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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2 ReactionsHi ga29, I'm thrilled to hear your fusion seems to have resolved your neuropathy!! Oh let it be true! Sudafed is "Pseudoephedrine, a sympathomimetic drug of the phenethylamine and amphetamine chemical classes. It may be used as a nasal/sinus decongestant, as a stimulant, or as a wakefulness-promoting agent in higher doses." Epinephrine is "A hormone secreted by the adrenal medulla that is released into the bloodstream in response to physical or mental stress, as from fear or injury. It initiates many bodily responses, including the stimulation of heart action and an increase in blood pressure, metabolic rate, and blood glucose concentration." So both stimulants. I have it written in my chart that I have a reaction to epinephrine. My heart beats almost double and then that gives me chest pain. It also causes anxiety. Dentists use this a lot in their injections and it's used a lot in suturing wounds b/c it stops heavy bleeding which can obscure the site the provider needs to see well. I too am on Morphine and then I take Gabapentin along w/ other drugs such as daily Prednisone and Ridaura, a demodifying anti-rheumatic drug (DMARD) which are both immunosuppressant medications. I will be praying for a complete and very quick complete recovery for you! Be safe and many blessings, Sunnyflower
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1 Reaction@bethunger. Hi. Not sure how i missed your post before I posted but I just read it and I so relate to you! I have 6 rescue dogs. Thankfully I have a large backyard and a dog door so they give each other plenty of running around and wrestling for exercise but they are my sanity!!
You have your bike, I have my horse. I have retired her, she had an injury 2 years ago and we had been forced to stop competing b/c of my issues a year before that but she is living at my good friends breeding farm. She is due to have her first foal this May. My goal/dream is that in 3 to 4 years when the foal will be trained and ready to start working towards a show career I will be ready to ride again too. I have no idea if there is any chance for this to happen but I won't give up the plan!
I hope we will have many more encouters on here. We can share and compare our crazy lives.
Don't give up on that bike!
Megan
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3 Reactions@bogibus
Hi Megan, I am so glad you arrived at this forum. It is a great place to get things off your chest as well as to bounce ideas off of others and to brainstorm. Welcome!
In this post of yours there is a lot to process. Firstly, my background with neuropathy is that my wife has had sfpn (not officially diagnosed, fyi) for 7 years. I look after her. She primarily uses marijuana for her pain. I'm not sure she knows the kinds she of marijuana she has; most of her stockpile came from California years ago.
Random thoughts about your prodigious story:
When this all started 20 years ago in your back and hips, did it seem like anything might have triggered it, such as an injury from your riding? Or did it come completely "out of the blue". There are lot's of things that people say caused their neuropathy. Some examples are: vitamin b12 deficiency, different types of surgery, someone even mentioned getting a shingrix shot caused theirs! It is unusual for someone in their 20's to have neuropathy as in your case, but not unheard of. I wonder if your cause could be genetic?
When you mention "rare, fairly new, type of small fiber polyneuropathy" I had not heard of some "new type". I wonder what they mean by this? Understanding this could be critical to understanding your symptoms.
Did you have the fatigue and brain fog before taking Lyrica & Cymbalta? Some of these medicines have side effects like this.
You say you had no improvement from steroids which they gave you for 5 months and yet later they put you on Solu Medrol, which sounds like another steroid? When you've got a hammer (steroids) I guess all problems resemble a nail, right? Sounds like steroids are not the answer for you. From what I know they should not be taken for extended periods of time anyway. Hopefully they will clear your system within a month or two (that is how long it took me to clear them when I got a heavy dose once).
The questions about your future with this illness which you want answers to from your neurologist, are not the kind doctors usually like to try to answer and pretty much can't answer.
You mentioned wanting more energy. One thing I take that has helped my energy level significantly is acetyl l carnitine. My wife and I take that and about 3 or 4 other supplements for boosting mitochondria (body's energy factories). Feel free to ask for more info if interested.
I am sorry you are dealing with this Megan. I find it especially troubling to hear of anyone young having to, it just seems particularly unfair. Please stay connected with this site. I have done so for a year now and I can tell you it has been very helpful in assisting me to learn more about my wife's neuropathy as well as getting ideas to treat it or at least cope with it better.
Best to you, Hank
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1 ReactionHi @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?
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1 Reaction@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
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1 Reaction@bogibus
Megan, thanks for your answers to my questions. I get up super early in the morning (2 am) and will send you a private message about the mitochondrial-boosting supplements. Tomorrow, you can click on the little envelope symbol up at the top of the page to read my info about this. Best, Hank
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1 ReactionHi Hank, I too would be interested (and maybe others) to learn which supplements you take for energy. I am always interested in hearing what works for someone re our neuropathies. Helen P.S. I contacted Horbaach re the RAla and they said it is just a temporary delay.