FND burning sensation...

[mabelwoofer]

Hi. Newly diagnosed with FND. Progressing fairly well with help of neuro physio. main problem (apart from actual functioning!) is the burning/ tingling sensation in my hand. any way to improve this please. Exercises that help?? Thank you

[Stone86]

Hey! Ugh the darn burning sensation is the worst! I always describe it not so much like pain, but just that constant annoying gnawing burning that drives a person crazy! For me I have it in my calf. What I have found that helps is using a personal TENS machine. I would imagine it would be difficult to place on your hand, but I would think even if you placed the TENS on a different location on your body, say your arm, that the sensory input from the TENS would help your brain shut up the sensory misfire in your hand. Adding that sensory input, kind of acts as like a distraction to your brain and it has really worked well for me.—-I also use it when I start to experience the functional issues too, which helps with them, but doesn’t help as much as it does with the burning. Amazon has a great one for like 30 dollars. I just ordered a new wireless one today to wear at work! I wish I knew how to get rid of the burning all together and I had that answer for the both of us!- but hopefully you can at least find a little relief! Hang in there!

[mabelwoofer in reply to Stone86]

Thank you. That makes sense. Learning curve fairly steep at the moment!

[Stone86 in reply to mabelwoofer]

You got this Mabel! Keep fighting for yourself and never stop asking questions and advocating for yourself!

[maeveblue]

I can empathise with the burning but I experience it in my legs and feet. My physio who specialises in FND has suggested a stim device similar to a TENS machine as the stimulation is a distraction for the brain for the sensory nervous system glitch that is creating the burning. Perhaps you can see if your physio can introduce one in a physio session and id it benefits you then you could invest in one.

[mabelwoofer in reply to maeveblue]

Thank you

[Eunomi]

Hi, also Suffer from burning pulsation in my hands, as a retired medical professional I diagnosed peripheral neuropathy. Spoke to my GP and decided to try Gabapentine a nerve agent. After the third day had severe sensations and side effects. Came off it. Spent 2 days in bed couldn’t feel my body just head and burning hands. Very weird. Why? Do we have to suffer these symptoms of FND for ourselves without any support. Even my Neurologist has discharged me. Have booked acupuncture as there is evidence that it can alleviate the symptoms. Will let you know my results.god bless Liz

[mabelwoofer in reply to Eunomi]

Hi! Ex nurse here! FND only happened in September so am still learning, discharged from hospital with no followup!No nhs support available before January sohave paid for every neurology appt /physio etc...Neurologist also prescribed this med. Didn't fancy it much!Interesting to see how you found it. Am doing neurophysio which is helping, am walking, resting, some household stuff. Have found some hand exercises I found on you tube for peripheral neuropathy, just started these.

I feel I've gone a bit backwards today, really heavy. Is this how FND goes??!

[BlueSkies1 in reply to mabelwoofer]

Hi there,I don't have burning sensations but will tell you what I have been taught to do with all my sensations. Meditate in a calm and peaceful place: breathe, name the sensation, accept the sensation, be curious about the sensation, and just keep returning the the breath. No expectations for it to leave (this is so hard!), just total acceptance. This is working well for most of mine...I find they just disappear while I am meditating. I am told that we are teaching the brain to not attach to them, to let it know they are irrelevant, and so eventually it will stop producing them.

Other than that, I was told that for a different illness with neurologically caused burning skin, that to alternate bathing the area in burning hot water and freezing cold water (as much as tolerable) will sometimes "shock" the brain into its old and better pattern.

Good luck! I know that this is just so hard to live with. I have been told to openly accept the downturns, and although it is so hard, it actually brings me peace. Take care and wishing you all the kindness in the world. : )

[mabelwoofer in reply to BlueSkies1]

Thankyou. Every change with this disease scares me as I don't know if it means I'm getting worse. Meditation is def worth a try....

[Jd13 in reply to BlueSkies1]

I agree with this and have been taught that too

[HenriettaPoultryfoot in reply to mabelwoofer]

mabelwoofer,

When first diagnosed this past July, I was overwhelmed by continually escalating symptoms, including the horrible tingling, numbness, and burning. Mine is on the tops of my feet (bottoms are completely numb) and right hand. I have incredible itching in random places as well.

I agree with those that have tried distractions and overloading nearby nerves.

For me, FND has been an up and down see saw.

Fatigue dramatically worsens my symptoms. I try too avoid over scheduling.

I hope you find a method to relieve some symptoms, especially while waiting for appointments next year.

Hang in there, mabelwoofer!

HenriettaPoultryfoot

[mabelwoofer in reply to HenriettaPoultryfoot]

Thanks for reply. I'm still in shock I think that this has happened! The only followup I'm getting is private physio. Should I be pushing for other help?

[HenriettaPoultryfoot in reply to mabelwoofer]

If you have a primary doctor who knows you, I imagine he/she would be willing to listen and discuss therapies. There may be ones that are appropriate for you.

[BlueSkies1 in reply to mabelwoofer]

Hi Mabelwoofer,I really hear you when you say you are in disbelief that this has happened to you..,.I am three months in and just now coming to terms with this diagnosis and its bizarre effects. A psychiatrist told me last week told that acceptance of the diagnosis is the key to recovery ❤️‍🩹.

Other help you may want to consider is an OT. They are trained to support recovery from neurological and psychological challenges and understand pacing, fatigue, and sensory issues. Or a counsellor who understands FND can do therapy to help you. In my experience we must become the experts on FND and ask for what we have decided we need! And to listen to ourselves regarding what is working for us.

Backslides are terrible to go through. I agree. I cry every time. But they will happen. Accepting them is important. And then, with rest and pacing and therapy, you will begin to recover. This disorder is the ultimate teacher of listening to ourselves and honouring our needs. Good luck with this! It’s a tough one! You are on a difficulty journey but you are not alone.😊

[pollybanana]

Yes, I get burning and tingling in my legs and feet all the time, especially at night, but I also suffer from RLS. It was really my first symptom years ago.I have tried lyrica, gabbapentin etc. but they did not work for me. I have a Tens machine but the sensation from it is rather like that which I am already experiencing. I hope you find some relief.

[mabelwoofer]

Thank you

[Lullee]

Hi, I'm 23 yrs suffering with FND amongst other disabilities. I started experiencing the burning over 10 years ago, my limbs. I burn all over now for many years, like I'm on fire. it's excruciating & so uncomfortable & painful. I have fans even in winter & am just in under garments what with the on fire feeling, the bodylocking, paralysis & many other symptoms it's easier. I find non constrictive clothing better & easier to remove if I need to. FND messes with our vasomotors as it does with nearly almost all functions.