Member Neuropathy Journey Stories: What's Yours?

I have read these stories with much interest, as my journey overlaps with many of yours. Mine started at age 51, 5 years ago. I am hearing you say doctors don't have time to research, there are so many mysteries, hard to diagnose etc. I admire those you with the positive attitude to make the best of it and try to live life to its fullest. My problem is, at my sudden crippling onset 5 years ago, accompanied with an infection/UTI, only bloodwork was done (and nerve conduction study).Then "let's wait & see". Now after 5 years, I am tired of doing nothing. I have moved to a bigger city hoping for better medical care. I'm ok if I'm told so many can't be diagnosed, but let's test me first! I had to beg for a sural nerve biopsy, which was done last week, while my neurologist said an MRI won't tell us anything, so we haven't done that less invasive test. I don't want to bike or run another marathon, I just want to walk and carry a grocery bag at the same time, and help my older husband. Getting off disability and working again would be a big plus. I hear many of you talk about skin biopsies, plasmapheresis, and other attempts to diagnose and maybe treat (bonus if there would be a cure). So I pulled teeth to get this painful ankle nerve biopsy, and I await results then hope we can try something else, but why won't doctors help look for causes rather than tell you to live with it, if there's a chance a reason and help may be found?

Hello to all,

I posted several times previously and have been quietly following this group for a while now, but have never formally introduced myself or posted my crazy story. I am SO grateful this community exists - it has revived my hope and reason for waking up in the morning!

My name is Karen, I'm 31 and my journey with small fiber neuropathy began six years ago. It started as numbness in my right leg below the knee - I saw vascular/neuro (normal results, of course), who said to me, "Well, I don't know. Guess you'll just have to live with it." [and I quote] I said heck with it and moved on with my life. Then, two years later, came aggravating weakness in my right hand which progressed to numbness/weakness and interfered with work, so I headed to the doctor. He said it was probably just De'Quervain's Tenosynovitis, so just wear a splint and move on. I did, but it only got worse over time. Dropping things became the norm and sometimes hard to write. Being ambidextrous, I utilized this ability quite often until two years later, when things would change again. I got in a bad car accident, sustained a concussion (that's a whole nother story in itself fyi) and lost all my short-term memory. Three months later, I started having substantial pain radiating down my whole right arm and my hand was basically useless. I waited another year to go back to the doctor about it, but when I did, he said oh btw you have this elbow problem and sent me to neurology for nerve testing. Results came back normal, but he knew I had nerve damage, so May 2019 I had submuscular ulnar transposition surgery. In the meantime, my left arm mirrored the right (hand weakness minimized tho). I had knee surgery June 2019, then surgery on my left elbow October 2019. About the six-week mark, I noticed some unusual swelling around my elbow with extreme pain but waited til my post-op recheck two weeks later (December 18, 2019) to mention it. My Dr panicked upon seeing it so did an ultrasound - he immediately pulled me into emergency surgery. Turned out to be a massive blood clot covered with a mystery infection - it was *literally* the size of a tennis ball, about 1/2 of it was visible. I woke up with a drain in my arm and intense pain. To this day, I have zero feeling in both of my hands, worsening weakness in right hand, intensely severe pain/hypersensitivity in both arms, 2-day post I&D surgical pain in my left elbow and now numbness/pain below both my knees. To shorten the details for the rest of the story - I I have seen many Drs and have gone thru extensive testing of all kinds. I have a regular neurologist who narrowed it to the small fiber type after 3x positive biopsies. Genetic testing negative, minus SETX gene mutation c.4433c>a (A1478E). I do take Gabapentin which tones down the pain just enough to function and preserve sanity. I go back to see him 11/3/21 to discuss the next steps in finding the cause, if there is one. I've already tried many other unsuccessful therapies, medications etc. So, what I'm left with (besides ugly scars) is - I cannot touch my left arm at all, both arms are hypersensitive and must remain compressed at all times, I suffer from insomnia already but hardly sleep anymore due to nerve pain, I'm nauseous 95% of my day and lucky to eat 500cals/day or drink beyond sips, I have to pee 3-5x per night, some days my right hand is uselessly curled up, no feeling in either hand plus weakness, and the pain game in my arms/legs continues to increase/change. I have given up being almost completely active and drawn back majorly on hobbies/interests e.g. figure skating, running, cycling, hunting, fishing, drawing/tattooing/painting, crocheting, playing the organ etc. Even sleep is no longer an escape for me, I feel like I'm living inside a burning hell (pardon my french here). All this to say, I'm not complaining about my circumstances, only that this is the reality of my everyday life and, as I've heard it many times said, THE STRUGGLES ARE VERY REAL.

Thanks to everyone out there who's listening ... and, for understanding and sharing in the battles. You guys are warriors and I am so so grateful to walk alongside and draw from such strength! THANK YOU! I hope my life can encourage someone ...

Karen

Hello to all,

I posted several times previously and have been quietly following this group for a while now, but have never formally introduced myself or posted my crazy story. I am SO grateful this community exists - it has revived my hope and reason for waking up in the morning!

My name is Karen, I'm 31 and my journey with small fiber neuropathy began six years ago. It started as numbness in my right leg below the knee - I saw vascular/neuro (normal results, of course), who said to me, "Well, I don't know. Guess you'll just have to live with it." [and I quote] I said heck with it and moved on with my life. Then, two years later, came aggravating weakness in my right hand which progressed to numbness/weakness and interfered with work, so I headed to the doctor. He said it was probably just De'Quervain's Tenosynovitis, so just wear a splint and move on. I did, but it only got worse over time. Dropping things became the norm and sometimes hard to write. Being ambidextrous, I utilized this ability quite often until two years later, when things would change again. I got in a bad car accident, sustained a concussion (that's a whole nother story in itself fyi) and lost all my short-term memory. Three months later, I started having substantial pain radiating down my whole right arm and my hand was basically useless. I waited another year to go back to the doctor about it, but when I did, he said oh btw you have this elbow problem and sent me to neurology for nerve testing. Results came back normal, but he knew I had nerve damage, so May 2019 I had submuscular ulnar transposition surgery. In the meantime, my left arm mirrored the right (hand weakness minimized tho). I had knee surgery June 2019, then surgery on my left elbow October 2019. About the six-week mark, I noticed some unusual swelling around my elbow with extreme pain but waited til my post-op recheck two weeks later (December 18, 2019) to mention it. My Dr panicked upon seeing it so did an ultrasound - he immediately pulled me into emergency surgery. Turned out to be a massive blood clot covered with a mystery infection - it was *literally* the size of a tennis ball, about 1/2 of it was visible. I woke up with a drain in my arm and intense pain. To this day, I have zero feeling in both of my hands, worsening weakness in right hand, intensely severe pain/hypersensitivity in both arms, 2-day post I&D surgical pain in my left elbow and now numbness/pain below both my knees. To shorten the details for the rest of the story - I I have seen many Drs and have gone thru extensive testing of all kinds. I have a regular neurologist who narrowed it to the small fiber type after 3x positive biopsies. Genetic testing negative, minus SETX gene mutation c.4433c>a (A1478E). I do take Gabapentin which tones down the pain just enough to function and preserve sanity. I go back to see him 11/3/21 to discuss the next steps in finding the cause, if there is one. I've already tried many other unsuccessful therapies, medications etc. So, what I'm left with (besides ugly scars) is - I cannot touch my left arm at all, both arms are hypersensitive and must remain compressed at all times, I suffer from insomnia already but hardly sleep anymore due to nerve pain, I'm nauseous 95% of my day and lucky to eat 500cals/day or drink beyond sips, I have to pee 3-5x per night, some days my right hand is uselessly curled up, no feeling in either hand plus weakness, and the pain game in my arms/legs continues to increase/change. I have given up being almost completely active and drawn back majorly on hobbies/interests e.g. figure skating, running, cycling, hunting, fishing, drawing/tattooing/painting, crocheting, playing the organ etc. Even sleep is no longer an escape for me, I feel like I'm living inside a burning hell (pardon my french here). All this to say, I'm not complaining about my circumstances, only that this is the reality of my everyday life and, as I've heard it many times said, THE STRUGGLES ARE VERY REAL.

Thanks to everyone out there who's listening ... and, for understanding and sharing in the battles. You guys are warriors and I am so so grateful to walk alongside and draw from such strength! THANK YOU! I hope my life can encourage someone ...

Karen

I have been taking Gabapentin for several months now for severe neuropathy. Prior to,that I took lyrica. I have had numbers and tingling in my feet for many years. The pain, burning and electric shocks to my toes have increased dramatically over the last two years. On Monday my neurologist put me on Cymbalta. I took it for three days and haven't slept in two. The Cymbalta has dramatically increased my RLS. I read where this is one of the side effects. I take 0.5mg of klonopin for RLS but it did not cover the augmentation. My question is have others had this particular side effect from Cymbalta and how did they handle it. Also, has anyone else found good results from other meds similar to Cymbalta? Thanks for any and all input. Cathy

Hi Cathy, I took Cymbalta for about a year (+). My doctor told me to take at night because it causes drowsiness. It ended up being the opposite for me, which he then said does happen with a small percentage of people. So I switched to taking it in the morning. I felt like it did take the edge off the pain but at the time had no idea I had SFN and decided to go off Cymbalta. Overall I just didn’t like how it made me feel (can’t really pin it down to something specific but maybe just that I felt emotionally/mentally numb). To answer your question about RLS, I never put two and two together but in hindsight I did have RLS more so then. Fast forward, I have been diagnosed with SFN/AN and my neurologist has prescribed Amitriptyline. We talked about many other options (lyrica, gabapentin, etc) but I’m pretty sensitive to drugs, so we decided to give amitriptyline a try. I started on a low dose and am gradually working my way up. With each increase, I notice slight improvements.

I hope you find something that works well for you. Take care.

Hello @boltz7555, Welcome to Connect. Thanks for sharing your experience with Cymbalta. Do you mind sharing a little more about your diagnosis and the symptoms, have you tried any alternative treatments?

Hi @johnbishop - sure, thank you for asking. I apologize in advance as I imagine this reply may get a bit wordy. For reference, I am a 44 year old female. I was just diagnosed with small fiber / autonomic neuropathy last month. However, I now believe my symptoms started as a child. For as long as I can remember, I’ve had quick sharp pains, twinges, tingling, etc. and my mom would say they’re growing pains. I’m pretty sure I haven’t grown an inch (maybe shrunk 😊) in the last 30 years, though I have always experienced those “growing pains”. Additionally, I was diagnosed with IBS, menstrual disorder and arrhythmia/irregular heartbeat all in my early 20’s. I’ve had chronic daily headaches for as long as I can remember. My neurologist said all but the headaches are related to the autonomic neuropathy. Prior to my SFN/AN diagnosis, I was going to my primary doctor more frequently because the widespread pain, depression and headaches seemed to be increasing. My primary prescribed Cymbalta to treat the pain and depression. It helped but overall I did not like it, as I mentioned. I went off the prescribed medication for several months except OTC (Advil/Tylenol) which didn’t help at all. I tried 100mg of gabapentin and it made me extra groggy with no benefit. I went back to my primary and she suggested I try low dose Amitriptyline (10mg) since I am very sensitive to medication. It took some time to adjust to the medication and definitely helps me sleep; I take it about an hour before bed. It didn’t do much for the pain but it helped my moods. Since it didn’t help with pain, my primary referred me to a rheumatologist in July 2021 who diagnosed me with fibromyalgia but suggested that I also see a neurologist. That’s where I finally started to get answers. I had my first appointment with the neurologist in Aug 2021 and he immediately suspected SFN. I really don’t think I had ever heard of SFN until he mentioned it. He scheduled a punch biopsy, one on my upper thigh and one just above my ankle. Results came back positive with the official diagnosis last month, Sept 2021. My neurologist and I talked about options to treat the symptoms and since I am too sensitive to gabapentin, we agreed to increase my dosage of Amitriptyline to 20mg (double). He said that’s still way low to treat SFN pain but we will continue a gradual increase. I have noticed a difference with the increased dose, although not a moment goes by that is pain free. I am adopted so I don’t have family medical history, although I am slowly learning a little about my DNA/family history (that “wordy” story belongs on some other forum 😊). I don’t have diabetes or any known underlying cause for the SFN so my neurologist has me going through a lot of tests to rule everything out before deeming it “idiopathic”. Lots of bloodwork, MRI, MRA, EEG and the full download with a cardiologist (EKG, echocardiogram, etc). My follow up appointment with the neurologist is 12/6/2021, which will give me time to get through all the tests and for the results to come back. I’m relieved to be getting some answers after years of not knowing why I experience the symptoms I have and even just now realizing that some of what I experience isn’t “normal” because I’ve lived with it for so long. Yet, I’m also a little anxious about what it all means, how it will progress, what my symptoms will be like in the future. But I am hopeful now as I finally have some answers. It’s a start. I’m grateful for this forum and the stories/experiences people are willing to share. ~Robyn

Good evening Robyn, @boltz7555. That's quite a story and thank you for sharing. It does sound like you ae reaching the end of the diagnostic phase. Will you please continue to share the results from your neurologist and the impact of any treatments that are recommended? This will help the virtually hundreds of folks who will read your continuing story. I am hoping that you will discover the value of a shared partnership with your clinicians and providers.

May you be free of suffering and the causes of suffering.
Chris