I recently wrote a post to Dee in the new member introductions sections who has "full body small nerve fiber neuropathy (which I pointed out is MUCH MORE RARE than typical SFN).

http://neurotalk.psychcentral.com/sh...599#post999599

Since I've been hanging around with the nice folks on this board I have heard this disorder by very many names, including:

- non-length dependent small fiber neuropathy
- non-length dependent small fiber ganglionopathy
- small fiber neuronopathy
- sensory ganglionopathy
- sensory neuonopathy
- sunburn syndrome
- and now, "full body" small nerve fiber neuropathy.

In any case, Dee was asking for suggestions from the SFN community. I felt like I should take a shot at contributing some of the lifestyle changes that I have made to help me minimize pain.

I apologize in advance for how long this post will be. As an aside, I take Cymbalta, Lyrica, Evinza, Vitamin B-12, Ibuprophen, R-Lipoic Acid as well as other meds for high blood pressure, diabetes, cholesterol, etc.

Over the past three years my pain has definitely decreased. In 2010, I was miserable with pain rating regularly being 7-9 each evening. That was a year of searching multiple MDs for relief. In 2011, I focused on behavioral/environmental intervention to control pain and that brought my pain ratings to 4-8. In 2012, I began treatment in a Pain Control Clinic and low level narcotics has decreased my pain levels to 2-5. That's a pretty substantial decrease across years.

I believe that behavioral adaptations are probably mostly responsible for a decrease in distress. I have found that I am not able to work an 8-hour day. I usually am able to work from 4.5 - 5.5 hours before the pain symptoms start to become intrusive and affect my ability to sustain attention. If I force myself to work longer, I typically will experience a very difficult evening and often will miss a longer period of work the next day. I would expect a significant increase in distress if I were to force myself to stay at work each day for a full eight hours. By the way, I am burning through my sick leave and vacation leave and will be out of leave by Nov. 1. Fortunately, I am taking early retirement from the State of Hawaii on October 1, 2013. I will probably be applying for disability after that as I don't think I will be able to find a job that will accommodate my needs.

Current Pain Symptom Profile in order of most bothersome to less bothersome:
1. Daily Pain on skin of face, forehead and cheeks, nose irritation from reading glasses, exacerbated by cold air or blowing air usually becoming worse in late afternoon;
2. Daily Pain in thighs, usually becoming worse in late afternoon and evening;
3. Pain on skin of arms around upper firearms occurs from wind and is periodically exacerbated by cold air, indoor air-conditioning, or blowing air;
4. Daily pain around stomach from side to side but not on corresponding areas of back; exacerbated by tight clothing.
5.Pain on top of feet exacerbated by cold air. This usually only occurs when barefoot at home with air conditioning, To a less degree this happens on the top of my hands. I use driving gloves when cruising around in my roadster so the wind doesn't bother my hands.

I have tactile allodynia. "Allodynia" means a painful response to typically non-painful stimulus, and "tactile" means touch. This is what makes your clothes hurt when they touch or brush your skin, what makes a sheet feel like sandpaper, and turns a light touch into searing pain. Wind from a fan, for example, or through a car window is painful, particularly the longer I am exposed to it. There seems to be a summative effect in that if I place something fairly light on my thighs like a newspaper it will start hurting after a few minutes and becomes like a chinese water torture after 10 minutes or so.

Behavioral/Environmental Changes to Reduce Pain
#1.I've not had a lot of luck with face pain. I wear large glasses with extra large nose supports to try and distribute the weight bearing load across a larger portion of my nose. Whereas I used to want a fan blowing on my at all times because I would get hot and sweat. After sweating my clothes sometimes get cold and bothered my skin, so I will often carry two changes of clothes with me to work. I change to dry clothes every 2-3 hours (my clothes get soaked with sweat because I wear three layers of shirts; undershirt, long sleeved shirt, aloha shirt) to decrease the coldness/pain that I feel.

If I REALLY need a fan, I put it on rotate rather than directly on me as I used to. Or turn it off completely and endure a warm sweat which seems to be less bothersome than cold.

#2 Is an area in which I have had some success. I started out with the easy things--not keeping anything in my pants pockets; no money, no car or house keys. For example, I wear a chain around my neck and hook my car keys, house keys, work keys, and work ID on the chain. Looks weird, but feels better! I also realized that my thighs resting against the arm rests of chairs became very painful over a period of 10-20 minutes. So I brought pliers and screwdrivers from home and took off the arms from chairs at work. I also brought in my own comfortable chair from home to my main work sight. In the evenings after work, I tried to rest in my easy-chair and my legs would become excruciatingly painful from the contact with the chair's arm rests. One weekend, I pulled out saw and cut the arms completely off. You would not believe how much that improved my quality of life. I can now actually relax instead of having my legs burn. Oh yes, one more thing. The data is in, days without underwear are a lot more pleasant that days with underwear.

#3 above. I have found that wearing a long sleeve undershirt (swim rash guard) under a shirt I wear to work effectively helps with this pain unless I sweat and the undershirt becomes cold thereby exacerbating the pain. I have commissioned a number of long-sleeve aloha shirts for fully covered wearing.

#4 Well this is a weird one. Wear really loose clothing. Now I typically wear a pair of pants with a belt. I have also purchased several sets of suspenders which I can attach to the belt. The great thing about Hawaii is that you can wear Aloha Shirts which are big and baggy and hang down below the hip area. I wear the suspenders over the undershirts that I wear and place a big floppy Aloha shirt over the suspenders. Then I adjust the belt quite loose so it doesn't bind and then unbutton my pants and keep the zipper about one-half closed. So the suspenders and belt make a nice loose "hoop" for me to drap my aloha shirt over and it covers the fact that I am wearing my pants fairly open and loose.

So the basic strategy has been to eliminate sensitive points of contact with skin and cover skin with loose clothing rather than face things jangling in pockets and the cold and wind directly contacting the skin. At home I have 4 full size robes that I use to lounge in as well as 5 sets of baggy cotton pajamas with long sleeves and long pants. Wear socks all the time. When out or visiting other always look for chairs or furniture which will help relieve pain rather than introduce it.

When you see me, I'm the one all covered up. Earlier this year I realized that the thought of wearing short-legged pants sounded aversive to me. I donated them ALL to goodwill. I'm probably the only guy in Hawaii with no shorts!

Well, I hope this case study of how one can change things in their daily life to improve quality of life is useful for others to think about.

Mike

I can definitely say that posts like this are very helpful for a newcomer like me. I recently went to my doctor because of pain which has been determined to be neuropathic. My main objective in going to the doctor was to get medication for the pain (even though I normally avoid meds at all costs). But after finding this forum and all the information about supplements and other ways of addressing the pain, my plan is to first try other alternatives instead. Thanks to all who share techniques that have been helpful for them.

Thank you for your post Mike. I was diagnosed with SFSG in April 2011 by skin biopsy. Your descriptions of the associated discomforts and the how actions of daily life affect them are amazing! I too have implemented many of your suggestions over the years with similar results. My situation is complicated by my living in upstate New York where we seem to have constant wind from Lake Ontario and nasty winters. Facial pain is especially hard to manage in this environment. All of the first line medications for pain have either done absolutely nothing for me or had short term effectiveness. I am currently on no medication for pain and trying to just force my way through it. Fortunately I am retired and don't have to force my way through performing at a job. Wishing us some kind of better relief through research. (if much is being done for such a rare issue.) Wayne