I recently have been diagnosed with Functional Sensory Symptoms. These are symptoms such as burning feet, a buzzing sensation in my limbs, with alot of twitches. There is no real explanation for these symptoms and i am really depressed about it. I have been thinking about jumping in front of a train, but i am getting counselling and i am learning to cope.
I have been prescribed drugs by the doctors which do not work and wondered if anyone knows any diet changes i can make that could help or any supplements or herbs please? I also get concerned that maybe this is a small fiber neuropathy and the neurologist has mis-diagnosed this. I have had vitamin levels checked, but is there anything else such as antibody profiles that could be tested for check for this?
Thank you for all your help and support everyone. Hope your having a good day and thank you for reading my post.
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bangar321
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Hiya, and sorry to hear about your distressing symptoms. I don't know anything about small fibre neuropathy so can't answer that question specifically. I do wonder what tests you have had before being diagnosed with functional symptoms though? Have you had a spinal MRI?
I had a lot of blood tests, inflammatory, infectious and metabolic panels plus autoimmune tests. I also had brain and spine MRI and nerve conduction studies.
Since being diagnosed with FND I have been taking large doses of Magnesium, B12, B6 and iron. Like you, I feel depressed about this condition as I was hoping there would be something that could be fixed. I still haven't really accepted that there isn't more going on to be honest.
I developed burning sensation in both feet and side of my legs sometimes worse that other times.
My wife has MS and also suffers from burning sensations both of us have never found anything that helps just have to try and distract yourself from it but even that is hard to do.
Please stay positive! I, like the other two responders, haven’t found any magic cure...just prayer/meditation, keeping my mind off of the pain, rest, hot showers with strong pressure and massage. As for diet, I tried a more vegetarian diet and cut out all drinks but water. Did notice more energy but nothing where the pain is concerned. Amped my vitamins too. Praying you find peace.
Hi, so sorry to hear of your symptoms, I too like others have said take b12 and b6 the magnesium I take until I get diarrhoea (which I read means your body has enough) and a multi vitamin, I have found I can distract during the day but soon as I lay down at night the pain returns. The only relaxing muscles I can remember and found worked for me is clenching different muscles on a count to ten then relaxing them, I do this through the night as I struggle to get to sleep then wake for hours during the night. I thought anything is worth trying and have read through lots of posts over the years wrote things down then my partner will get them for me to try. Writing everything down helps me to remember.
I suffered from very similar symptoms. It turns out my FND was exacerbated by a B12 and really bad Vitamin D deficiency. I've been working to get my levels evened out and it's helping a lot. Honestly, the only thing that really helps with this pain is medical marijuana combined with CBD. The CBD counters the THC so that I don't feel "high" but I still get a benefit from both. When I go to bed I don't use the CBD. It's expensive, but it's helped me get my life back at some level, so I'm grateful for that.
Thank you for getting back to me everyone it means alot.
It is really miserable to adjust to this condition and i am sorry alot of other people are experiencing this. I had such a happy life, then one morning i woke up with a variety of neurological symptoms and from this day forward, i have been trying to cope as best as possible.
I do have a Vitamin D deficiency, which i am working on correcting, i hope the levels get to normal in a few months. I have had two brain MRI scans over a period of 8 years. I have also had two whole spine MRI scans and nerve conduction studies which all came back normal thankfully. I have had blood tests for B12, Folate, HBA1C, Glucose, ESR, CRP, full blood count and biochemical profile. Mic i note you mentioned a few blood tests such as inflammatory, infectious and metabolic panels plus autoimmune tests, is there anything else you could kindly recommend i mention to my GP as a final blood tests to check anything else please?
I will try Magnesium and Vitamin B12. Has anyone tried Turmeric this is meant to help with nerve pain type symptoms? The worst symptom for me at night is i get twitches in random places of my body and random muscle spasms and i wake up at 6am worrying and i am becoming so tired. Has anyone found anything that helps reduce these spasms and twitches please?
Hiya, I feel the same as you. I still haven't accepted this if I am honest. I keep thinking there is something they have missed. I can't believe how much my life has shrunk and how fatigued I am constantly. This is not helped by shoulder issues on both sides which affect my neck muscles too!
In terms of extra bloods, I had ANA & ENA (I think to rule out auto-immune disease) and tests for Myasthenia Gravis. I also had copper, zinc, homocysteine, VLCFA,
HIV, VDRL, HTLV, Lyme, immunoglobulins, paraproteins, LDH, serum ACE and Chest XRAY. I cant remember what a couple of these are but you can Google them.
I have found the Magnesium has helped with a lot of restless leg problems I was having at night and also pain after walking. I havent tried Turmeric yet. In the Facebook group, a lot of people are trying CBD oil, but I would recommend a good one and not Holland and Barrett etc as the levels are too low. Hope this helps a bit. M
Thank you Mic, i appreciate your reply. I will request these bloods from my GP, but i believe they will come back normal and the neurologist is confident this is functional.
I am the same as you, i was hoping there was a vitamin deficiency i can correct and get my life back. It seems we have been hanged in the gallows with these awful symptoms, but we should be pleased i guess, there is nothing seriously wrong. I will definitely try the CBD oil is this fairly new on the market?
One thing my GP advised, is removing alot of carbs from my diet. I used to have a high sugar diet, i have had blood sugar problems in the past, going faint if eating too much sugar. This is the only thing i can try in the hope this may help my symptoms. How is your diet Mic, is this something you have tried, i will be making changes this week to see if this helps, but not holding my breath. Thanks for your reply anyway hope your trying to keep as happy as possible.
Yes, I have tried to look at my diet too. I was on PPI drugs (lansoprozole) for a decade and when I was having all these tests, i thought they may have been causing vitamin malabsorbtion so I weaned myself off them. Not easy! I had testing for swallowing trouble too and they found Helicobacter Pylori so I just had that treated. I firmly believe in the gut/brain link. Im not particularly disciplined but my diet is improving. My GP suggests coloured veg for the nervous system, purple, red, orange things etc but I dont tolerate veg too well. I take B12, B6, Magnesium and iron now.
For the burning feet, try imagining that the burning comes from 1000s of smiley faces on your nerve endings, or try imagining that it is a symptom from rubbing something good-feeling like Icy Hot on your feet.
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