Is my mystery neuropathy FND?

Hi everyone

In 2013 I developed overnight neuropathic pain. After many crying trips to the GP, they just said I have vulvodynia. The mystery is that I simply developed a small cyst and overnight I had full-on stabbing pains ! I then developed sciatica as well as coccyx pain (for no reason)

I was treated with amitriptyline 50 mg and Lyrica 300 mg and sustained full remission and even weaned off all meds for a year and a half. I doubt that nerve damage would have allowed me to experience remission.

I have since had a relapse. I recently tried to wean off my amitriptyline and at 30 mg I had another relapse. I have crawling under the skin, buzzing/electricity feeling, random shooting pains and symptoms that move around. I even feel a ghost cyst when there is nothing there.

Does this sound like a functional neurological disorder? As it makes no sense, my symptoms make no sense, for example when I am with my boyfriend I have less symptoms (he makes me happy). I am absolutely exhausted by this neuropathy and all the tablets. Lyrica makes me feel like a different person (apathetic and detached)

thank you

[tabey]

dear maryjane 55

Its so nice to meet you and welcome

I've been told i have FND and i get terrible stabbing and burning sensations in both legs and arms and I get the feeling as if I'm being electrocuted inside I get this day and night without warning not normally all at the same time but it has been known and yeah it is reduced me to tears to I've absolutely got no rhyme or Reason for fnd but that's what they said I've got I'm on drugs like gabapentin and Oramorph and many others and I still get horrific pain try and stay as positive as you possibly can I always think to myself if I cannot laugh at something stupid at least once a day it's been a good day I refused to let this drag me down but I guess that's a little hypocritical with myself because it has drag me down in the past but hey we're only human

take care

tabey

[Justdrea81]

Have you had your vitamin levels checked? I was initially told FND as well. It turns out my Vitamin B12 and Folate were low, and my Vitamin D was critically low. Since all of those have been fixed, my neuropathy has been improved significantly.

[Dartchick]

Hiya, I take amitriptyline but I have it for anxiety. I have low folate and vitamin d deficiency and this can cause similar pains and feelings but I've not had it from my tablets (had them in the past before I had FND and didn't get this). Sounds to me like anxiety and FND as you say you do not get as much with your boyfriend.

[Moomoomoom]

Being with bf will help as it will release endorphins which relieve pain. (Better than painkillers often a pain specialist said to me) Doesn’t mean it’s necessarily anxiety causing pain at all. That’s just a well used excuse doctors use when they don’t know what to do.

I’ve just been diagnosed with my first fibroid after horiffic nerve pain in left leg poss caused by virus. I wonder if there’s any connection.

[Moomoomoom]

When I take antivirals I get less of the nerve symptoms you are mentioning. Just in a discovery phase now myself as not one hospital dept will deal with my pain even though it put me in a wheelchair.

[Hidden in reply to Moomoomoom]

So sorry to hear you are in pain! Any chance it’s post herpetic neuralgia? Nerve pain meds that are good include nortriptyline and Cymbalta, Clonidine, Lyrica.

I have a fibroid too. And vulvodynia. Fibroids shouldn’t cause nerve pain, your pain sounds like something else. It could alao be the spinal nerves as it’s your leg! They should be able to do tests on you! Has no one offered any testing????

[thinkin]

Hi,

There are research articles finding that certain vitamins can be used to reduce neuropathy. One is P5P a bioactive form of B6 ie. It's ready to be used by your body, they recommend you take magnesium with it. There is also allithiamine a form of vitamin B1 (found in garlic) and proven to cross the blood brain barrier. There's no research saying that these work in particular for FND and no guarantee they will work for you, but worth discussing with your doctor as an alternative to drugs with side effects. You need to check that your B12 levels are high enough too, ie >500. B12 can be bought as a sublingual spray if you need it so it goes straight into your system. Also get enough natural daylight as vitamin D is important for people with neurological issues and unfortunately you can only get 10% of what you need from your diet.

The thing when looking for vitamins is those labelled active or bioactive. If you have been eating a normal diet you should have enough, but there are many processes that are needed to make them usable by your body. If any one process isn't doing it's job then you can have problems of vitamin deficiency or insufficiency with levels/ intake that are ok for most people. Also with bioactive forms you need a much lower dose.

One word of warning about allithiamine is that it can cause a "Paradox effect" where symptoms can become worse for a few weeks before they get better. It also leaves a slight garlic tang in your mouth which I don't find problematic. As I have a functional movement disorder too it means I can walk better as well as improving my neuropathy and I'd rather put up with the garlic taste and be able to have some quality of life.

Don't worry everybody's pain is better with distraction. Whether it's pain from wounds, or less obvious neuropathy.

Hope this helps. You are not alone.

xx