LindsayLast night, for the first time in a long time, on my insistence my husband went out without me. For years, as my postural orthostatic tachycardia syndrome (POTS) symptoms have become more manageable, and I have become more confident in my abilities, I have been able to participate in more activities. Until now.
My husband and I were recently reminiscing about what it was like in the few years after my diagnosis. I only worked until about noon, then would come home and take a long nap. I’d work from home again in the afternoon, if I was up to it. I was lucky if I could stay up until 9:00pm, even on weekends. If we were ever invited to an event, chances were good he would end up going alone. A typical Saturday would involve waking up and having breakfast, followed by a 4 hour nap on the couch for me while he played video games or went out and ran errands. We would have lunch and I’d sleep for the rest of the afternoon. We would often make plans to go out to dinner, and settle for bringing in takeout followed by an early bedtime.
Little by little things began to improve. I could stay up later, work longer, nap less. I still wasn’t able to go for a long walk, stand for long periods of time, or work a full day, but I enjoyed the increasing independence. And over the past 7 months, I have very much enjoyed the reduction in reliance on medication. It felt like POTS and I had finally reached an understanding.
Until a couple months ago. I began experiencing a burning in my feet. I don’t know if it is related to the burning head/face I previously wrote about, but unlike that mess, my feet are getting worse. It’s in the soles of both feet, although the left is always worse, and usually in the palms of my hands. The pain is a consistent low and slow burn accompanied by an electric or vibrating sensation. It feels like I am resting my feet on a hot furnace humming with electricity.
I discussed the pain at my appointment with my POTS cardiologist last month. He said it sounds like neuropathy, and informed me that approximately 50% of POTS patients have small fiber neuropathy (SFN). From what I understand it’s also common in fibromyalgia and EDS. SFN occurs when small myelinated and unmyelinated nerve fibers are damaged. The nerves misfire, sending pain signals to the brain. Because we’re not certain that’s what I have, I will wait to post more.
My pain has been worsening recently, to the point where I’m not sleeping well and am regularly awoken throughout the night. It’s too painful to even have the sheet touch my feet, so I sleep with my feet out of the covers. I have tried everything I can – acetaminophen, ibuprofen, menthol pain cream and patches, lidocain pain cream and patches, other topical pain relievers, and CBD oil. Nothing helps.
And suddenly, I’m back to needing multiple naps per day and lying down as soon as I get home from work. I am always exhausted. If you’re not familiar with the difference between being tired and being fatigued, I describe it like this: tired means I would fall asleep if I went into the bedroom to lie down; fatigue means I’m not sure I can walk to the bedroom without falling down. I don’t know if the fatigue is simply from the lack of sleep or if, along with the increase in neuropathic pain, I’m experiencing an increase in other symptoms as well.
That’s what’s scary about having a chronic illness – it’s cyclical, and you never know when your symptoms will flare, and how long it will last. Even when you feel like you’re getting some of your life back, there’s always that nagging voice in the back of your mind reminding you that nothing is permanent.
I’m nervous that this is the beginning of something. I’m nervous that everything I have worked so hard for will slowly disappear. I’m nervous that I will be spending a lot more time in bed, missing out on things. I’m nervous that, after working for years to reduce the amount of medication I take, more medication will be the only answer for the pain. I’m even more nervous that there won’t be any answer.
I have an appointment with a new neurologist this week. I hope he has an answer for my nerves.
Friends, if you have any suggestions for managing neuropathic pain over the counter, I’m open to trying anything.
Your pain is the breaking of the shell that encloses your understanding.
Khalil Gibran
Smell ya later.
– Linds
Not sure I can offer any pearls of wisdom but I can certainly empathise. I’ve had the humming electricity in my hands and feet (and sometimes my whole head including my tongue!) for over 20 years and if it’s any consolation you kind’ve get used to it. Sorry to say I’ve never found anything which helps.
The burning pain in my feet only started about a year ago. I have burning muscle pain as part of my ME, but the soles of feet burning is new and, like you’ve said, it’s so bad some nights it feels like I have my feet in a fire. I have been diagnosed with peripheral neuropathy but no-one knows why. I’ve not had a biopsy for small fibre neuropathy – I couldn’t much see the point as it’s obvious I have neuropathy.
Apart from being uncomfortable (ok, painful but you do get used to it and your brain dulls it down) it doesn’t really bother me. I don’t have extra fatigue or anything as a result, so hopefully that part is just a blip for you and will improve again.
All the new shooting, stinging and burning nerve pain I’ve had recently I put down to the peri-menopause. Even healthy women can develop nerve pain during menopause transition, though obviously I’m older than you!
If you want to try pain meds, the best will probably be gabapentin or pregabalin – they can do wonders for nerve pain and weird sensations though they can have side effects such as weight gain and initial sleepiness (which apparently does wear off when you get used to them). I know they’ve had a bad press lately, but several of my friends swear by these drugs as the only thing which helps nerve pain.
Jak x
Thanks, Jak! Sorry to hear you experience it, too. It’s reassuring that you get used to it after a while. I’ve dealt with it off and on for years, but it would last a few hours, then disappear for days. Now it’s always there.
I’m not in menopause, but my hormones are still all screwed up from stopping birth control pills almost 4 years ago. I wonder if that’s making it worse.
You never know with these weird diseases what’s really going on I don’t think. I’m blaming the menopause for everything and have done for the past 5 years, when in reality it might have zilch to do with anything LOL!
Really hope it’s just a passing phase and settles down x
I do not have this problem and have nothing to add, but I can tell you how very sorry I am about this new development. It never fails. Just when you think you have a handle on things you lose your grip again. Sending positive energy your way with hopes for a quick resolution.
Thank you so much, Denise! that’s so true – just when we think we have everything under control, life throws us a curve ball! I hope you are feeling okay.
I’m so sorry, Linds. I’ve had times where I’ve been so disheartened, like things seem to lift ever so slightly and it takes so long to get to that point and you work hard and ‘hang in there’, then it’s like it takes a backwards step and suddenly it’s back downhill again, or there’s a new problem to contend with. It’s cyclical and we know it’s up and down with chronic illness, but that doesn’t make it any less frustrating or worrying.
For neuropathic pain, or any pain really, I’ve not found OTC stuff very helpful. In general, I’ve found it does zilch. The only thing that’s ever helped in the slightest has been codeine (cheap own brand with the same mg as the expensive versions, with paracetmol mixed in). I imagine you’ve probably tried this before though..? I just find OTC never does anything, but it’s always worth keeping an open mind and trying other things so I hope someone can suggest something you’ve not tried. Hopefully the neurologist can investigate the pain a little more and devise a way forward, whether with more tests or reassurance that this is another blimp and bump to navigate. Sending hugs, and I’ll keep my fingers crossed for you ♥
Caz xx
Thanks, Caz. I’m having the same problem with OTC treatments. I have multiple types of pain cream, all of which are helpful for muscle and joint pain, but they aren’t doing anything for the neuropathic pain. At this point I’m willing to try anything, but am glad my neurologist appointment is just a couple days away. Usually I hate appointments with new doctors, but I’m really looking forward to this one.
Hugs to you!
I’m not sure which day it is this week but I really do hope it goes as well as possible!! 🙂
xx
So sorry to hear about your flare/new symptoms/setback. Understand your discouragement. 🙁 I was also going to suggest gabapentin – not surprised Jak beat me to it. I titrated up very slowly, but found I could only handle a very very small dose (200mg/day) due to negative side effects. It does help me sleep a bit better, and does seem to help with my neuropathy, although it would probably be more effective if I could tolerate a larger dose. I find that a heating pad on my back does help with the neuropathy in my legs, as does watching my posture and doing exercises to reduce hyperlordosis. This video has been helpful: https://www.youtube.com/watch?v=aJxQZyVnoI4&feature=youtu.be
I also recommend this book, Pain Free by Pete Egoscue: https://smile.amazon.com/Pain-Free-Revolutionary-Stopping-Chronic-ebook/dp/B00KPBDCA4/ref=sr_1_1?crid=3SGAE7OUTN5WC&keywords=egoscue&qid=1554743582&s=gateway&sprefix=egos+cue%2Caps%2C154&sr=8-1
It has DIY physical therapy broken out by specific body parts/symptoms.
Good luck finding answers and treatments!
Thank you for your comment and the book recommendation – I’ll check it out. Can I ask what side effects you experienced with the larger dose of gabapentin?
A lot of my symptoms got worse: insomnia, dizziness, neuropathy pain started waking me at night, irritability, trigeminal migraine frequency increased. Plus I got despondent and had significantly degraded impulse control – I was saying and eating things I normally wouldn’t and knew I shouldn’t. That was at 500mg, which is still a pretty low dose. So we backed it down to the last dose at which I felt positive effects but no negative effects. I was not ok with the med affecting my prefrontal cortex (judgement and decision making part of the brain) and I was not ok with ripping my poor spouse’s head off (figuratively speaking). YMMV. I always hope meds that don’t work for me will work for someone else.
I’m about to sound like a damn commercial…ask your doctor about Lyrica. I was on it for fibromyalgia, but it’s also prescribed for neuropathy pain. In fact I think that may have been originally what they intended it for but they noticed that it helped fibro patients a great deal. In any event, it’s a nerve medication and might help you with this problem.
Thanks, Leticia! I’ve seen all the commercials for Lyrica but was forgetting it can help for neuropathy. Did you experience any side effects while on it?
My worst side effect was constipation, but at the time I was taking prescription painkillers so the 2 combined made that much worse for me than it should have been. I hear it can make you a little loopy like a narcotic, but I never had that, I felt fine to go about my life just as I did. I think it can have all the usual side effects like depression, but again I never had that issue. I contributed any depression to the fact that I had a chronic illness and felt crappy all the time lol. Overall it was very helpful for me, and worth taking another 2-3 pills a day. I know you wanted OTC options, but I’ve never heard of anything that improves neuropathy like RXs do. I didn’t have the kind of neuropathy issues like you’re having, but what few and minor ones I did have like tingling in my fingers, it even helped improve that a little (even though my tingling was caused by pinching nerves in my neck).
Thanks for sharing your experience. I only asked about OTC options to help until my neurologist appointment this week. If he wants to prescribe something to help at my appt, I am totally open to that 🙂
I hope you can find something that helps it in the meantime, until your appointment. Are you able to take anything to put you to sleep? I have really bad insomnia so I take pills every night to force my body to sleep. I don’t know if it would allow you to sleep through the pain before your appointment, or if the pain would still keep you up and just succeed to make you extra groggy and frustrated. 😕
Erythromelalgia is what it sounds like.
Hello Linds!
It can be caused by Dysautonomia.
I go through flares with it.
If it’s hot, on my feet a long time, if I have a virus that my body is fighting.
If my histamine is out of control I will notice an EM (Erythromelalgia) flare.
The Erythromelalgia Association (TEA)
is a lot of help.
What is Erythromelalgia?
Erythromelalgia is a rare neurovascular condition that most commonly affects the feet, but may also occur in the hands, face, or other parts of the body. The term neurovascular means that both nerves and blood vessels are involved.
https://erythromelalgia.org/wp-content/
Hope that helps, and it takes a while but it does get bearable. Then when you relax or breathe…or do too much!, big flare big time!
For me Gabapentin is a life saver. I tried going off of it, but when I was about halfway down off of the dosage, the pain came back so severely that I called my doctor ( Who smuggly said,” I thought you would be calling!”) and had him re-prescribe it immediately!
The burning is tolerable with it.
I could actually see the red climbing up my legs! One toe on my left foot started turning red, then purple. That’s how it started in summer of 2012.
I hope that your pain becomes less, or preferably goes away.( Hey it could happen! How many times have we had some weird cramp/knot/ sore/blister/ hip or knee subluxation just disappear?hmm?)
So there is always hope 🤪
Darcy
Thanks, Darcy! I’m sorry to hear you experience this, too. The pain at night is so much worse, for whatever reason. If I could lessen the pain at night, and get some sleep, I can tolerate the day pain. Thanks for the information about erythromelalgia, I will look into that.
There is a wonderful website called “Hormones Matter” that goes in depth into neuropathy, POTS and vitamin B1 deficiency, linking the deficiency to many other disorders. If you haven’t already, maybe try a B complex or B1 supplement and see if it makes a difference for neuropathy and dysautonomia. This site changed my life.
Thank you so much for your comment! I will check out the Hormones Matter website. I just recently started taking a B complex vitamin, but it has only been a couple weeks, so I’m not sure if that would be enough time to make a difference, if that is indeed part of the problem. I had no idea about the relevance of a B1 deficiency, so thank you for sharing that!
SFN is one of the things I wondered if it would be. I so far only have very mild signs of it, but a TENS machine has been helpful if you are looking for something cheap and immediate. It also produces a stinging, burning sensation but like with wave theory, intentional similar zaps of the right frequency can minimize the feeling from the first neurological signal as an adjunct pain relief to meds – and just something you do until you work out a med regime that minimizes side effects. I went through gabapentin and some similar for migraines and side effects weren’t great, so a $25 dollar non-drug option you can buy on Amazon might really help while you work out if you can take those types of drugs successfully.