LindsayI have to extend a monstrous “thanks” to everyone who commented on my last post or emailed me. I had my neurology appointment today and felt well prepared after hearing all of your experiences.
As I suspected, I was diagnosed with small fiber neuropathy (SFN) today. SFN occurs when damage to the peripheral nerves affects the small (as opposed to the large) myelinated or unmyelinated nerve fibers. SFN typically manifests as a burning or tingling pain in the feet and/or hands and can spread up the legs and arms. There is no cure for SFN, but it can be treated.
SFN is often caused by diabetes, certain autoimmune conditions, HIV, celiac disease and bunch of other illnesses, and toxic exposure. It is estimated that up to 50% of people with postural orthostatic tachycardia syndrome (POTS) also have small fiber neuropathy, although I’m not sure which causes which, or if they are both attributed to another cause. The neurologist ran some blood tests today to see if we can identify another cause. If everything comes back clear, we’ll attribute it to dysautonomia.
Small fiber neuropathy is most often treated using gabapentin (brand name: Neurontin), typically prescribed for seizures, or antidepressants in an off-label use. My doctor prescribed gabapentin, and because I am so sensitive to medication, we’re starting at a super low dosage of 100mg. If I tolerate it, the goal is to eventually reach 300mg multiple times per day.
It’s been a tough week, and to be honest, I’m too tired to have an opinion about my new diagnosis. I have done little during the day but sleep since Monday. No work. Not a lot of eating. Not even any reading. This morning I showered for the first time since Monday (you’re welcome, neurologist). Taking the dog outside in the backyard to pee for a few minutes requires a 4 hour nap.
At the beginning of the week I was really hoping not to add any additional medication to my treatment plan. After all, if you’ve followed this blog for a while you know my goal is to eventually be med-free. But as the week progressed, I just wanted to not be in pain. The pain is so much worse at night that I can’t have my feet touch the sheet or bed, so I keep them out of the covers. But then I wake up because they’re cold, and put them back under the covers. Thirty minutes later I wake up because it hurts too much, so I stick them out of the covers again. This goes on all night, waking up every 30-40 minutes. It’s exhausting. I may still get 6-7 hours of total sleep per night, but only in composition of 30 minute intervals.
At this point, I don’t think this extreme fatigue is related to the neuropathy. I have had a slight fever and a little nausea and vomiting, too, and am hoping this is just a weird, week-and-a-half long flu. That may sound like an odd wish, but a flu, even a particularly bad one, is better than a bad flare.
Friends, I’d love to hear about your experience with gabapentin – how much you take, what side effects you have experienced, and how it has helped. Even if you commented on my last post about gabapentin, I would appreciate it if you would comment here again, so others who come across this post while researching small fiber neuropathy and gabapentin can see them, too.
“The world gives you so much pain and here you are making gold out of it.” – Rupi Kaur
Today is National Pet Day (honestly, every day is at my house), so I must give thanks to my little sweet pea who has been the best nurse I could ask for.
Smell ya later.
– Linds
So sorry you’re having to deal with this on top of everything else, but glad at least you received a firm diagnosis.
Re gabapentin: both my parents are on it. My Dad for peripheral neuropathy, and my Mum for nerve damage following Guillain Barre Syndrome. They are both on 5 x 100mg tablets a day. Apart from some initial sleepiness, and in my Mum’s case some weight gain, neither have had a single side effect and it has been really effective in combating weird sensations and nerve pain.
My mum also used it when she developed post op neuropathy following lung surgery – on that occasion it literally saved her life. She was in so much pain she couldn’t eat, lost nearly 40lbs in three weeks, and was really ill. Four days after her first gabapentin tablet she was discharged and back home!
My Dad is otherwise fit, but my Mum has both MCAS and hEDS although only mildly. Neither has dysautonomia though my Dad has chronically low blood pressure and heart rate.
I know Gabapentin has had bad press as being addictive and some people can’t tolerate it, but my Mum in particular swears by it! After her op she was on it for 6 moths, then came off it gradually no problem at all x
I’m sorry you’re in so much pain. Nobody should have to endure this type of life. Hoping it lets up, quickly. I’ve been prescribed gaba but can’t tolerate it. My dog was given it as well and I had to pull him off it. Trust your gut with it. Hoping this weekend brings you an upward swing of better health. 🌸
Thank you! Can I ask what kind of side effects you had from gabapentin?
Well, I guess a diagnosis gives you some clarity, but I’m sorry it wasn’t better news. I hope you get the blood test results soon and maybe that can shed a bit more light on things, though if 50% of those with POTS have some form of SFN then that seems a likely cause as any. Starting low on gabapentin sounds like a good idea; it can be hard to adjust to medications let alone when you’re very sensitive to them like you are, so I’ll keep my fingers crossed for you that your body tolerates it okay without any side-effects. You’ve had a lot on and all of this is exhausting mentally, so I’m not surprised you’re tired. I’m afraid I can’t offer any personal experience on gabapentin as I’ve not taken it, but hopefully someone else here has some thoughts to share. I’ll just wish you the very best with it. If that doesn’t help or isn’t tolerated, there’ll be other things to try. Obviously it’s not ideal and you don’t want more meds, but with any luck they can find a happy medium and it’ll help your symptoms.. Sending hugs, rest up & know we’re all rooting for you ♥
Caz xx
I also was recently diagnosed with SFN. I have the EDS trifecta and am now looking for an autoimmune culprit as well. My neuropathy is severe, and ironically, it is LEAST severe in my extremities.
I’m trying to figure out if there is a way to treat it besides Gabapentin, mainly because I feel so freaking sick all the time, and if I can discover an autoimmune cause, id love to treat the root cause in hopes I might feel better.
I’ve been taking gabapentin for years. I find that it gives me brain fog and word-finding difficulty sometimes (at least I think that’s the culprit, even though brain fog from POTS and MCAS contributes. I am not potentially sensitive to Gabapentin, and I can take loads of it if the pain is really getting to me. It helps, but only in very large doses.
I look forward to hearing more about your SFN journey. I hope you are able to find and treat the cause in a way that’s more comprehensive than throwing Gabapentin at it.
I’m also an ex-lawyer, and I CAN say that it would be impossible for me to practice law on Gabapentin and other pain drugs I take. I used to be pretty darn smart. But the daily beatdown of pain changes the brains in the best of us, I think. More’s the pity. Hang in there, and thanks for this blog. If you are at all in the Dallas area, I’d love to add you to our secret invite-only support group. Just let me know.
Hi! Thanks for your comment!
I wish i was in Dallas so I could join your secret group! So far I have mixed reviews about the gabapentin. I thought it was helping (at a very low dose – I’m super sensitive) for the first couple days, but now not so much. The drowsiness and brain fog even at a low dose are tough, I can’t imagine much higher. I’m also wondering if it’s causing some pain and will try a night or two without it to see what happens.
I have been reading a ton about neuropathy and potential causes and still have a long way to go. Out of curiosity, have you ever been tested for the MTHFR gene mutation?
Hi Linda, I’ve been off the grid for a while on this email and I’m so sorry to hear of your new diagnosis and the pain that you’re in. I hope you can get on top of that asap with the medication. It must be horrible on top of your POTS, as if thats not enough.
I don’t seem to have SFN as I am not in pain. I have been diagnosed with MCAD, with constant elevated tryptase in the blood. Sometimes I think that makes me feel worse than the POTS but never know which one is which most of the time symptom wise. I think I recall you being on MCAS treatment as well? It seems it’s one thing after the other. I hope you’re not in a bad flare atm x
Thanks, Jo!
I see my local neurologist that I’ve been seeing for years for migraines and he diagnosed me with sfn. He doesn’t treat POTS though so I travel to another specialist for that. There is no coordination of care so the neurologist prescribes meds cand then when I see my POTS doctor some time later he says not to take it (this included gabapentin). He instead prescribed me marinol to help with sleep and nausea, but my insurance denied it. For now I’m using melatonin and it does seem to help with my sleep. I also recently added a weighted blanket. I thought I’d hate it, but I read somewhere that it could help quiet the sympathetic nervous system. It’s only been a week, but it’s helping a lot! I’ll buy anything that I think can help. I hope you have some luck with treatment!
I can relate! I see a neurologist for my SFN and a cardiologist for my POTS. Luckily my neurologist is familiar with POTS, but he doesn’t seem to have any interest in treating it. I know my cardiologist would rather I try low dose naltrexone than gabapentin, which I’d be open to. I’m glad to hear melatonin is working for you! It gave me horrible tachycardia, but that was so long ago that I wonder if it still would. My HR drops when I sleep (low 50s to high 40s), so a little increase wouldn’t be bad. Maybe I’ll give it a try again!
I have been reading up on weighted blankets a lot lately. I think I might find one helpful, as I like to sleep with a pillow just lying on top of me, and I like when my dog sleeps pressed up against me.
Hi and I have to say I’m not inspired here ! We are sick people aren’t we.
I have it all from the small fiber neuropathy to EDS and dysautonomia oh and DISH , I have DISH sometimes called Forrestiers Disease with a large Osteophyte in my C-Spine that needs some surgery to intervene the direction it’s headed in , my spinal cord.
As far as the Gabapentin goes for the SFN I am taking 2,700 per day using 900 every 8 hours and I’m still a raging buzzing tingling mess and it’s in my muscles and messes with the weigh I exercise, nasty stuff this SFN.
Wishing everyone Well and so !