Wow, I love this forum, and all the posts. I have so much to read each time I log in.

PLEASE keep posting. The best thing we can do for ourselves and for others is to share honestly down to the smallest details. Something that we discuss may really hit home for another person, and expand the horizon from that horrible huge cloud of pain and suffering, out to others and some rays of hope!

Now I'm going to do some research on SFN, for example, to learn more about what you're experiencing, and also CMT.

I managed to be pretty productive until age 57. And then what caused me to retired was a diagnosis of a 95% blocked coronary artery called "The Widow Maker'. I did NOT have a heart attack, the three blocked arteries were opened and two were stented. But I also had 6 trips into the OR in 10 months, for other issues that year.

So I decided to retire early, and spend more time with my grandchildren. And I was very active with them, but slowing down, and then my autoimmune conditions kicked in, my chronic infections, anemia, then profound PN, and finally a diagnosis of Primary Immune Deficiency Disorder. My body does not make enough of the normal antibodies to protect me. I have to have transfusions of antibodies from other people, every month. Now I have been found to have a rare, bizarre copper deficiency. My neurologist has NO IDEA what is causing it or really whether treatment will help.

The two major effects of copper deficiency are hematological (like my anemia) and neurological (like my PN).

I live in doctors' offices, I have blood tests every time I turn around. My folder is three inches thick (honestly) in my neurologist's office. My condition list is a full page long, and the medications and supplements list is more than a page long.

I didn't sign up for this. But it is what it IS.

SOME THOUGHTS ON PAIN MEDICATIONS:

1. Prescription Pain medications are the most abused substance in the USA.

2. Pain medications will relieve pain, but over time they lose their effectiveness.

3. Increasing the dosage may help, but eventually all pain medications will cease to really work.

4. In fact, when you stop pain medications after long usage, there is REBOUND PAIN. You have more pain than you had before you started.

5. These facts are very painful, because Pain has no before or after, only NOW. Pain is terrifying and life destroying. I know, as I"m sure you all know.

6. Medical Science does NOT have a very large tool bag for pain. If you have tried things from this list:
TENS
ICE
HEAT
PATCHES
CREAMS
Anti seizure Drugs (for pain)
Anti Depressants (like Cymbalta, on label for pain)
NSAID
Tylenol
Tramadol and analogs
Codeine and analogs (things like Dilauded, etc are included)
Prednisone

You have tried almost everything there is.

Have I left something out? Ii've tried all of the above.

What works for me: Cymbalta and Aleve, (Tylenol once in a while) exercise, meditation and relaxation. Heat for my Degenerative Disc Disease.

Now exercise with PN means one of two things: mild aerobics in a warm pool, and using the variable resistance machines at the health club. The ones where you can sit and move various parts of your body.

One of my conditions cannot be treated at all, causes frequent nagging pain, and I CAN CONTROL THAT PAIN with exercise. Isn't that amazing? I mean I found it out by accident, paddling around with my granddaughter at the pool one summer.
Now it is my 'go to' and I know if that nagging pain starts, I must get to the pool.

Please keep posting for me to read. I don't get out much, and you light up my life!

Hugs, elaine