I'd like to have some type of Neuropathy group to meet up with...just talking and sharing would be great...but I think our type of chronic pain is fairly rare... so getting a group together might be tough. I have thought about just trying to find an individual in my community that deals with these issues to meet up for coffee and talk, compare, and complain...just a little...that would be good for me and my sanity.

Maybe you can find just one other person in your village?...it may be enough to help and improve your quality of life.

Sven

Maybe it would be easier to find support groups or set a new one with people suffering from chronic pain, and not just SFN.
My best friends have fibromyalgia, M.S, lupus... the treatments and tests are somewhat different, but we all share the fatigue, disability and dealing with a chronic illness, and struggling with the health system.

By the way, 30-50% of the people with fibromyalgia have undiagnosed SFN, so we have a lot in common.

--you're in England, if I am correct; are there few/no organized support groups for various conditions there?

We have many of these in the United States, often coordinated by organizations involved in advocacy or fundraising for research into the conditions, and/or by hospital and health care systems. Yes, sometimes there are agendas with these in addition to the support function--I suspect a lot of medical centers here use these groups as a way to recruit patients, but even that can be positive if people get expert care they might not have before, and/or they can have access to clinical trials.

In the US, many of the neuropathy support groups were coordinated by The Neuropathy Association; since that is now defunct many are now coordinated through the Foundation for Peripheral Neuropathy. But there are many others affiliated with medical centers, there is a Southern California Neuropathy Association that involves many, many support groups in that state. And the Guillian Barre Syndrome/CIDP Foundation has their own far flung support groups, as does the Multiple Sclerosis Association of America, and various others.

I admit I don't know much about how such things are organized across the pond, but it's hard to imagine there aren't any patient support groups somewhere.

What we all have are Chronic Conditions.

Most of my need for support comes from the issues around having more than one Chronic condition.

I have pain and disability from mine, but it's really the emotional stress of the fact that my conditions will never be cured, are poorly understood by medical science and interfere with my daily life.

There is a group about and hour and a half away from me that deals with PN, but it is really too far to drive, and no one is nearly as disabled as i am. I went once, but I just cannot go back.

Hugs, ElaineD

Thanks all for the replies. I think I'd be hard pushed to find other PNers so even a group for those with chronic pain/ disease like this would be the catch all.
I read that about fibromyalgia. I think it's used as a catch-all for alot of things and I can easily believe so many have sfn damage.

Thanks Glenn. The only thing I've found locally is an M.E group. M.E is bad in its own right but not quite the same. I went along and all those there had M.E and didn't quite get my condition. They were lovely but I felt a bit of an outsider not having the actual M.E diagnosis.
I will go back to my local hospital and ask them again. They have a pain clinic and I wonder if I can reach out through that somehow.

I think it's fantastic your good friends are those with relatable conditions. I would love to meet more like this too. Obviously not good for them to have to deal with that but the shared understanding must make them so much more regarding

Thanks Sven, I really do need to keep my eye out as this alone would be wonderful. Its tough as I don't quite know how to find them. I must keep on looking though, there must be other people nearby in tla similar boat. Thankyou