Small Fibre Neuropathy and other health forums ...

[WiseMonkey]

Hi,

I've belonged to this forum for a few years now and really like the way people reach out and help each other, whether they have anxiety symptoms or other health issues.

Since June I've developed what seems to be small fibre neuropathy symptoms, which is difficult to diagnose without a special skin biopsy which they don't do in NZ. I'm seeing a very good neurologist Nov 11th. I have some autoimmune issues, which can predispose some people to having small fibre neuropathy. There are other factors that predispose people also, but I don't have these. Looking back over the years, I've had bits and pieces of SFN but it's always cleared away. There are treatments but no cures for this. The best curative treatments IVIG are in the States.

I made the mistake of joining a large SFN support group and it is largely all doom and gloom and quite frankly depressing! I know SFN can progress, I know it can be very painful, but I feel quite deflated at present so am opting out of it. There is a wealth of information there but I find myself getting way ahead of myself (if that makes sense) and feeling quite frightened. I realise that everyone's experience of SFN is different and not everyone experiences the worst.
I will relay this to my psychologist when I see her next.

I guess the message I'm giving is be careful what you join, or read and this includes Google.

[glassgirlw]

I’m sorry you’re having to deal with this, WM. Will send healing thoughts your way.

you make some great points though. My mom has fibromyalgia. Almost immediately upon diagnosis she had joined multiple Fibro forums. Every day she finds someone else with a new symptom that she relates to her own experiences. It’s impossible to say if it’s the mind manifesting these symptoms or if they’re truly there. The mind is a crazy powerful thing. And unfortunately for some of us, the slightest suggestion can suddenly morph into fact. Definitely have to be careful what we read!

will be thinking good thoughts for your neuro appointment!

[WiseMonkey]

I’m sorry you’re having to deal with this, WM. Will send healing thoughts your way.

you make some great points though. My mom has fibromyalgia. Almost immediately upon diagnosis she had joined multiple Fibro forums. Every day she finds someone else with a new symptom that she relates to her own experiences. It’s impossible to say if it’s the mind manifesting these symptoms or if they’re truly there. The mind is a crazy powerful thing. And unfortunately for some of us, the slightest suggestion can suddenly morph into fact. Definitely have to be careful what we read!

will be thinking good thoughts for your neuro appointment!

Thanks for your reply and good wishes , and best wishes to your mum also. I have CFS (chronic fatigue syndrome) so I partly understand what your mum is going through. A lot of Fibro people also get SFN (but don't tell her this)!! I'm 63, am in good health and am pretty fit but I had a hip replacement early Aug which I think has exacerbated things for me. I had burning hands and sore toes since June, but there has been a progression since then. I've started on LDN (low dose naltrexone) so will see how that goes. I love walking and still do it but my feet are painful afterwards ... pisses me off!!

And you're right, if you have HA these forums are not helpful, they play havoc with you mind and emotions!!

[gailveronica]

I was just recently diagnosed with Small Fiber Neuropathy. This only came through elimination - my doctor also did not do a skin punch, but with terrible progressive nerve pain in one foot as well as paresthesia in my one leg (same as foot), and numb patches on that foot where the pain is, my neuromuscular specialist diagnosed me (after many blood tests, EMGs, MRIs, CT scans, etc). I felt like I was going crazy. I posted here for at least 2 years, freaking out about everything.

While, yes, SFN can be a burden - and especially when it's idiopathic (sure I could have them test for some big scaries like Amyloid with a fat pad biopsy, but it doesn't show in my blood so I have to make peace with that) - it isn't the end of your life. I will likely be in gradual pain for the rest of my life, and I'm hoping it doesn't affect my autonomic system (digestion, blood pressure, mobility), but for now - I'm okay.

I wish you the best, I do hope they find a root cause and can get to the bottom of it.

Also please remember: anxiety can cause MANY symptoms that go hand-in-hand with SFN. I thought that's what mine was, but it kept progressing to a point that I could no longer lean on my anxiety. It took many years to find a diagnosis, and even still - no real answers. It is what it is.

[WiseMonkey]

Hi and sorry you have this and you are correct it is not related to anxiety and stress although they can make SFN worse. I hope you have some good meds and it might be worth your while trying LDN (low dose naltrexone) and/or PEA (Palmitoylethanolamide), I've just started on both and also take Hemp seed oil and magnesium. Sugar seems to be the worse thing for it, exercise is good if you can manage it and keeping your weight down. I've lost a couple of kgs since having my hip op and this SFN which seems to burn the energy off. I have a recumbent bike so do 30 mins/10km on that every alternate day, otherwise I walk for an hour. Like you I find my toes/feet are the worse as I can get burning pain with heat (after walking). My hands can also feel this way but are better than they were.

I have some autonomic involvement as I get flares of stomach trouble and also my temperature thermostat is askew, I also have some POTS, MCAS, CFS and IC as well, which are autoimmune conditions so that's likely to be the root cause. I don't have any large fibre neuropathy so mobility is fine . Not all cases are progressive, I read quite a bit of conflicting info on SFN. Some of the SNF forums are scary, so I'm keeping away from them. They are just a fraction of the people with this, there must be thousands of others who cope well with it.

I do belong to a local CFS/ME forum here in Auckland, NZ which is very helpful and supportive. It's not all doom and gloom, it's the last thing we need! I'm also in therapy with a psychologist which is helpful

Take care and feel free to private message me whenever