Support groups
 

I find the loneliness and isolation of the nld sfn experience to be quite tough to manage lately. I would really value being around others who have some shared understanding. Locally there isn't much at all in terms of support groups, I searched high and low. I did attend a group for those with M.E as this was all I could find locally. Although this isnt my diagnosis we shared the fatigue problem. 😞 It wasn't quite the same though as the shared experiences with those suffering ongoing pain.
I was considering trying to set something up locally for those specifically suffering chronic pain of some sort. I think I could muster the energy to do this if I felt there may be some others out there near me. If this sort of thing was available near to you, would it be something you think you would ever want to go along to? I ask you all hypothetically as you are in the best position. I appreciate I won't be there to whinge on and will instead have to be more pragmatic and positive! 😃
I have to think through everything I consider taking on as I fear the lack of energy I have. Every investment has to be considered wisely which is why I spend time considering these things rather than just getting on and trying it without hesitation.
Any honest words would be appreciated

Dear Joanna, I couldn't survive without my support group at Sjogren's Forum.

I have a bunch of Immune Disorders, and my profound Peripheral Neuropathy is caused by them. So I post here. I also have SFN, I don't know what NID means. I don't have Diabetes, if that's the reference.

But I found the Sjogren's forum when I was desperate and they have talked and loved and advised me for over six years.

I have Primary Immune Deficiency Disorder, so I post on the Immune Deficiency Foundation forum.

**

I can get that using Google and from my brilliant Duke Physicians or my Husband for 54 years who taught and did research at a Medical school for 25 years: Immunology! He even taught gross anatomy for 10 years. He knows more than I will ever understand and I chose my Duke University Research Immunologist to handle my CVID (my form of Immune Deficiency) so they could bond and understand each other.

I don't know if anything you have would fall under the Immune Disorders category, but lots does!

What do you want for support? Let me know what's on your mind, where you are in treatment and mental and emotional feelings.

Hugs, ElaineD

Thanks Elaine. Yes it's hit and miss as everyone is affected in their own way and has their own needs they hope to meet somehow through the forum. So right now I'm craving people around me who get it and that's why I want to gauge whether there may be interest in my area for a real life in person group. I was using you guys as a sounding board to see whether this is something people like you/us would ever be interested in. I don't know the answer for myself even though I'm considering trying to reach out to others locally by setting a monthly group up!
This would be mainly for the emotional support and shared understanding. Just being around people who you know you can relate to even if the topics covered aren't necessarily about suffering pain.
I know we all have different needs and many wouldn't be interested in this. I've got to the stage I am no longer equal with my peers and I want to find those I feel kinship with and also to share helpful info where needed / wanted. I live in a small city so may be one of the few suffering chronic pain round here, I don't know. I guess I was using this forum question as a sounding board to gauge whether any of you would consider a real person monthly group of any value if one happened to be set up in your local area.

Nld is non length dependant, so every single part of my body entirely is affected by small fibre neuropathy damage/ destruction at least. I have alot of other lovelies so know how you feel. It is a joy that keeps on giving! ��

I did join the sjogrens forum as despite no diagnosis still question whether this is the cause. But you can't really belong until you know you actually have that and can again relate directly.

Support Group
 

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.

Joanna--
 

--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 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

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 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.