Small Fiber Neuropathy: What helps?

@poppsy1 Hello from Northern Ontario. I too have challenges mental and physical and your post caught my eye. have not been following your posts but "not coping at all well" is familiar to me I get so overwhelmed I barely remember my own name. It's when the pain and anxiety take a very brief respite and I "almost" feel normal, is such a nice feeling but not happening a lot. I wish I had a "safety net" for the hours/days when I am not coping... I do listen to You Tube tapes (some are better than others) relaxation etc., and stay in bed which is too often lately.... but when things flare up it's hard to cope.... wanted you to know, and am sure you do, that you are not alone.
As my husband says; take one day at a time and I say can I take one hour at a time (I have even mentioned one minute at a time). I hope your gp and a crps contact you soon....here it seems many medical offices are closing on Fridays, so its 3 days wait for help which is a long time when need help. Will be thinking of you - Monday was disastrous for me; Tuesday livable; yesterday morning terrible and pm a bit better.... it's such a see-saw, merri go round - cant plan anything either. Hope some members you keep in touch with will get back to you today too ... J.

@poppsy1, Oh how sad I am for you. My dermatologist said I had a flaky scalp and told me to use Head and Shoulders shampoo. I use it but cannot tell that it makes a difference. My scalp still burns. There is a shampoo RX that I used for a while, but can't remember the name. My PCP doubled my nightly Amitriptyline to 20 mg. in the hope that it would help my scalp and my "down there" parts. Have you seen a GYN doctor? You might have lichen sclerosis or something else, but I use Halobetasol frequently and have a compounded mixture that numbs the area. I am in a flare mode once again. It never seems to go away so the numbing is essential. My heart goes out to you for all your pain and suffering. I hope you get some help soon. With all good wishes, @joybringer1

Hi Lacy Thank you for replying. I understand where your coming from. not knowing what each day will bring makes situation heck of a lot worse. My Husband died 5 years ago so now live on my own. Its such a cruel existence having to live with our out of whack bodies. I have no one one to talk or even a hug when I need it, which is every day. I was a very happy, active individual before these ugly symptoms started to grow in my body. Magic wand is what we need. Im having real problems with pain clinic at moment, spent most of today trying to get hold of someone to talk to regarding so called Drs phone appt that didn't happen. Dont know about u but I'm fed up with answering machines, bring back the god old days when u could actually speak to a human being. I miss the old me so very much, as I'm sure u do. I to get so overwhelmed with it all, not ashamed to say that I feel really scared at times, its all so sereal. Hope things improve for you sooner rather than later. Regards and Hugs

...just lost my other reply... poppsy1 sorry not sure about your scalp issue but when growing up, poor family, we used bar of plain soap, no bottled shampoo , and not saying this might work, but as a rinse (no cream rinse in those days) and no shower just a bathtub and jug: Mum used to put, well I am guessing, about a Tablespoon vinegar (it was malt vinegar) in the jug , and added probably about 3 cups warm water and ran through our hair after rinsing off the soap: I think she then rinsed again with plain warm water. (Shes not around to ask her)...but we had shiny clean hair . There was no smell of vinegar on our hair ... no "chemicals" but it sort of made sure all the soap was out and I think vinegar is harmless and also beneficial.. not too strong a mix.
Sorry not sure if this would be an idea for you, unless have cuts on scalp or sores.... is it worth a try?
Odd how now, as an older person, I have memories of the simpler times. Only meds we had were vaseline and Vicks I think! Anyway, thought I would mention it. My husband had been helping me a lot over the past few years and had to go out of town for heart surgery for 3 weeks and I had to cope on my own and look after house and dog. and snow removal..... and being alone certainly can wear you out, more so if ill... I am sorry to hear your husband died... that is enough in itself to cope with let alone pain and suffering... hope you get not only some responses to your calls to day but some help! J.

Thanks for the usefull, tips .

Thank u all for useful information. Unfotunatly my pains so bad I had to call ambulance this morning, they couldn't take me in to administer stronger meds. Im devastated, they phoned surgery to report my condition. What are we supposed to do when we are in pain crisis, just no help at all. I try to stay strong every day but when your whole body is suffering its difficult. xx

... ok hope today is a little better, mine a little worse but am gathering all my notes for the teleconference with neurologist next week... last sept when he phoned it caught me off guard and I was having a not too bad a day, so want to have my list ready... another bed day and so sunny outside... well some of the old fashioned remedies worked so thought would share.... take care J.

@poppsy1, I wish I had a magic wand and could take away your pain. Are there no doctors around you who might be able to help? Perhaps you have exhausted all the local help. How sad for you to suffer such pain. I am hoping for a miracle for you! Warm regards, @joybringer1

@oh so sorry, did not see your note from 2 hours ago: so the ambulance couldn't take you? I have never heard of that happening if reading correctly... I can only imagine how devastating that was.... so reply to your question is another question, but seriously "What are you going to do"..... I hope you find some help today, so upsetting to hear you are suffering....J.

Hi Lucy No ive never heard of ambulance refusing, how times gave changed. Cant beleive they would leave us to cope on our own in CRISIS. Spoke to gp, have increased dosage on pain killers. Waiting on appt for pain clinic, begged gp to chase it up as urgent. Not much more I can do at present. Regards