hi
 

Thanks for the reply Panther. I am hoping for the best at this point. Let me see how the next few months pan out. Uncertainty is the thing that makes me scared.

Thanks Deb.

How has it been with managing pain after seeing the pain mgmt dr. any more symptoms?

Panther
 

Sadly mine has progressed pretty rapidly. It started in my feet when I could barely walk a month after chemo ended. I had NO idea what was going on. My PCP immediately stated neuropathy due to the pre-diabetes and chemo. It's now in my hands, arms and legs. Sometimes in my teeth/gums and jaw.

I have not used any of the supplements that are suggested for neuropathy but I may start. They may be very useful for you.

Currently for the pain mgmt of SFN I'm on the following:

1,800 mgs gabapentin that I divide into 3 times a day

20 mcg/hr BuTrans pain patch that I change every 7 days

10-325 oxycodone-acetaminophen that I can take up to 3 times a day and I usually have to use 3 a day

I did confirm that the gabapentin was working when I had to go off of it for 6 weeks when trying another drug. 1,800 mg a day is my max. If I go any higher I start hearing muffled music and voices :eek:

Others on here told me I would get use to some of the pain in time but I didn't believe them.....lol....of course they were correct ! You get to the point where you can overlook some of it which is a blessing in itself.

The people here on our NT community are very caring, supportive and full of great information.

Are you taking any medication for this right now ?

Debi

It is scary to have uncertainty. Just make sure you see a neuro who now starts looking into ALL the possible causes. There can literally be more than 20 causes.

With your numbers it sounds like you will be able to survive but you must be willing to fight through some serious pain spells. Its gonna happen and you just have to fight through it. You will have days where you feel pretty decent as well. it will likely be most painful at night when COrtisol levels are low.

Most importantly, pay attention to triggers. For most people stress, sugar, wheat, certain foods and extreme temperatures will set things off.

I would make sure to go with 3 supplements to start. Acetyl L-Carnitine, Benfotiamine and R-Lipoic Acid. They have helped me the most. If you find yourself tired a lot get some sublingual Methyl b12. Take it every morning on an empty stomach.

For those that do heal, it takes years. For me, am I healing? I am not sure. I don't think I am worsening though. Mine really flared up like crazy summer of 2014. I got off all meds and went for supplements and dietary change. I am not active as much as I wish i could be becuase of the SFN which is the hard part for me. My SFN is worst at the bottoms of my feet, so that makes excessive walking or running difficult.

Hey there Patrick :)
 

Hi Debi - I tried to private message you but I am in Georgia and am looking for a new doctor (mine retired after 10 years of being with her), I am very fearful of the pill mills you mentioned. I know we aren't allowed to share Dr. names on here .....is there a way for you to share yours with me privately? I am a new member so I may not have all the bells and whistles of this site figured out yet! Thank you! - Bulldawg95

can my numbers start to deteriorate from here? technically my right calf is above the 95 th percentile. as the lab has specified might be early and evolving

panther

The original standards--
 

--for intraepidermal small nerve fiber density were originally set by researchers at Johns Hopkinsback in the 80's by comparing symptomatic people with "normal" controls; the numbers for mean, median and range of nerve fibers per cubic centimeter of hairy skin were tabulated and, in my opinion, the 5th and 95th percentiles from this large, but not huge, sample were rather arbitrarily designated as representing definite small fiber neuropathy. (See: "McArthur protocols".)

As I've written about here quite often, though, since people don't generally get skin biopsies performed unless they symptomatic, it's hard to determine what their asymptomatic normal actually is or was. One can go get a skin biopsy and be in the twentieth percentile and be considered "normal" but would have no way of knowing if before symptoms they were in the fiftieth percentile and this represented a dimunition of small fibers.

Fortunately, skin biopsies are easily reproducable over time, and sometimes the pattern over time--figures moving up or down or staying relatively stable--is a better indication of progression or recovery. The way we confirmed my impression that I was beginning to get function back and was healing at least somewhat was when my numbers over two years moved from the third percentile to the seventeenth. But who knows where I started before all this hit in 2003.

glen

How do my numbers look?

I read a scary article about supplement production and am looking for a trustworthy source. are suggestion s permitted here? Thanks!