Any Fellow Sufferers with Small Fibre Peripheral Neuropathy out there?

[Hilsho47]

I have Small Fibre Peripheral Neuropathy affecting both lower limbs. I would love to chat with anyone who has this condition. Very difficult to explain to other people the weird and wonderful symptoms I experience - the pain (helped by Gabapentin) and the constant, unrelenting paraesthesia. Is there anyone out there with this condition and understands?

Thanks

Hilsho47

[Hidden]

Hi Hilsho47. Only just joined and only just starting out with peripheral neuropathy (only at 'sock level' so far), but yes, I get what you're saying about not being able to explain the sensations to people who don't have them.

Hopefully the more experienced ones here will chime in soon and have more to offer than I have!

Tortoise

[Hilsho47 in reply to Hidden]

Hi Tortoise11

Good to hear from you. I have had small fibre peripheral neuropathy for 3 years. I am on Gabapentin for the burning pain in my lower legs, which is quite effective, but does nothing for the weird sensations that I also get from my feet to my knees. Although I am generally pretty fit I recently started Zumba and Pilates Classes which I really enjoy and they have definitely boosted my confidence. Nordic walking is also good and all three activities have my neurologist's blessing!

Have you looked up Small Fibre Neuropathy on the internet? Quite a lot there, but much of it obviously aimed at doctors and a bit difficult to get your head round!

Yes, hopefully between us we have set the ball rolling and the posts will start rolling in!

Best wishes

Hilsho47

[Hidden in reply to Hilsho47]

Great that you're so active! I recently started Pilates too (Zumba's beyond me) and it's definitely helping with balance problems and general confidence, along with the obvious things like rediscovering my muscles (M.E. since 2001 - another one that nobody understands - but much improved now and making the most of a good phase).

Got myself some magnesium oil spray this morning in the hope that it will help with the burning and so on. You're way past that, I guess (I'm not even on gabapentin yet). Hang in there. Hope someone wiser responds soon

Tortoise

[Hilsho47 in reply to Hidden]

So sorry to hear that you have M E but pleased that you are on the way to recovery. A close friend developed it some years ago. She is amazing and is my inspiration for all the activities I am doing. Last weekend she did the Moonwalk in London in aid of Breast Cancer charities. She also does tough hiking holidays. They all take their toll and leave her exhausted for a few days but she doesn't give up. I used to do long distance walks but had to give them up in 2015. I can walk about 4 miles with trekking poles but without them I can be v slow and a bit wobbly at times. Reading other posts it seems to affect people differently. I think keeping mentally and physically active is the best course and making sure that you are getting effective pain relief. Before my Gabapentin was increased I found that massaging my legs with lavender oil was soothing. Are you in the UK? Have just watched the Royal Wedding - good to have something to celebrate for a change instead of all the gloom and doom!

[Hidden]

Wow! What a friend! I'm not up to any of that yet, but progress is progress...

Massage seems to be a good help to quite a few. I'd better make it a nightly ritual, whether with magnesium or lavender oil. I love lavender - used to use it for all sorts of things and then got out of the habit - time to return to it, methinks!

Yes, I'm a Brit. Not a huge fan of Harry (don't shoot!), but I did watch it (not the hype either side of it, though). Lovely day for it.

Actually it's a lovely day for anything so why am I inside on a computer?...Bye!!

[Hilsho47 in reply to Hidden]

Just had a satisfying couple of hours in garden so don'the feel too guilty about a wasted? morning. I agree with you about the hype, and I thought the address was never going to end! Time I got my tea! 🍳🍟