My neuro is pretty much useless..........he lowered my gabapentin from 2700 a day to 1800 a day but didn't say what he had in mind for treatment. He doesn't give me my pain meds or Xanax....I get them from my PCP because SHE does understand the pain. My new oncologist made my appoint at Emory. Said that was going to be my best bet for help. I'm hopeful they can help me. The only treatment I've had so far is the gabapentin.

This week has been the worst....had a mammogram on Mon that I drove myself to (I usually don't drive unless absolutely necessary or ride if I can help it) then Tues my daughter in law drove me to neuro.....we then went to a dollar store. I just so bad wanted to shop. That put me in bed all day Wed and most of yesterday. I hate this. Hate it....hate it. I'm tired, scared and have no idea what the future holds for me with the SFN. It's moving up my legs and now my hands, right arm and part of my left arm are aching....a deep aching. The only relief I've gotten this week was from taking 1/2 a vicodin and 1/2 a Xanax at the same time. Sometimes that didn't even help. I've only been dealing with this since May. Diabetic/chemo related.

Wish I could say writing this made me feel better but it hasn't. For a person with a usual sunny disposition I'm broken....

Thanks for listening.....Debi

Debi, I am so sorry. You are always so cheerful. Many of us here have been abandoned by our neurologists- they hate prescribing pain medicine and realistically they aren't going to see us often enough to do it. They also tend to feel that since there isn't any treatment they can offer they are wasting their time and our money. If your PCP is willing to work with you on adjusting your medication for maximum relief that is probably the best way to go. Given your other issues there should be no question of taking your complaints seriously.

The future. It is easy to say try to live in the present and don't worry about what you can't control, but it is only human to think about what will happen if things continue the way they are, or get worse. You have been hit pretty hard with this, and your frustration level must be running very high. This has been sudden, which is much harder to adapt to than a gradual loss of ability like mine. Your experience with trying to do a little shopping raises the question- overall is it worth it to you to be more active, get out a little, shop, go to dinner, even if it means paying for it tomorrow, or do you feel better conserving your energy and keeping your days quiet and consistent? Only you can answer that.

I wanted to help a friend make pajamas for her children. I knew it would leave me pretty exhausted and sore, and it did, but I felt great about having done it. I would not have felt the same way about housecleaning, though that will have to be tackled, with a lot of help, in the next few days.

Honestly I think you may need something stronger, or more consistent if the pain continues to limit you this much. For something to think about with doctors there is this

http://www.healthcentral.com/chronic...hronic-illness

For thinking about conserving energy there is the ubiquitous spoon theory, which really helped my husband understand-

http://www.butyoudontlooksick.com/na...poonTheory.pdf

Please keep venting here, we care about you, you're so sweet! And take care of yourself. It is easy to forget how much extra work this time of year makes, even when you think you are taking it easy.
Bless you,
Susanne

Hi Elaine,
Your words hit the nail right on the head. I have always said that nurses make terrible patients. We are so use to taking care of others but tend not to be able to accept help when it is our turn. We do secretly think we can make things happen. Fix the wrongs.

I have that book. It is very good. I also meditate but I have really slowed down in that practice.

I am sorry that you can't take most of the medications available for pain. That must be difficult for you.

I need to find a way to accept this disease, plus I have to learn how to accept that I can't be in the shape I use to be in. I have never been good at loving & accepting myself.

At least I'm 55 years old. My daughter's friend is going through all something similar to and is 37. She has 3 small children. Now that is a shame.

Thanks so much for helping me to feel a little better.

Hi Susanne,
Thanks for the reply. I actually read this and went and took my medication. The Percocet really does help me. The pain goes down a lot after I take it. You are right I do feel guilty about it. I had a sister that got addicted to painkillers and alcohol. She had a severe case of RA. She eventually took her own life. However, when I look back to years ago she had an addictive personality. (Don't know if that is the right way to put it). It scares me!

My family keeps telling me that I'm not like that and I know they are right. I'm going to try to take the meds when I need them and stop worrying about it. I need to be able to do things.

I may have already asked you this but what test did you have done to get diagnosed with CMT. Do u know if the 23 and me test for it?

Thanks again for your help

Hi Hopeful, Just answering your question to Susanne. No, 23 and me never had a test for CMT when I checked. We have to have DNA blood testing thru Athena Diagnostics for example that could help those of us who have one of some 50 types of CMT and there is no end in site for that #. That was as of 2008. However, a lot of us CMTers have the more common types of CMT. Also, certain types of CMT (such as CMT1 or CMT2) can be diagnosed with EMG/NCV testing, family history, etc.

As of now, when I checked, 23 and me has suspended their genetic testing.

https://www.23andme.com/ancestry-onl...JJq2_WuB7DOlE=

My diagnosis was made based on examination, abnormal EMG/NCS, skin biopsy showing no small nerve fibers, and markers like childhood clumsiness, poor coordination, high arches, high stepping gait, absent reflexes and complete loss of sensation to the knees. Family history is prominent but shadowy, a dead end due to illegitimacy but lots of indications of severe CMT. Second opinion at Johns Hopkins, neuro offered more testing including full Athena panel but said it was unlikely to make any difference since there is no treatment for any type of CMT. I figured why bother? I received a very sincere "good-bye and good luck" from the doctor there.

You are not your sister, but I can see how an experience like that in your family would worry you. As long as your close friends and family see you functioning well you are unlikely to develop a problem. Under treated pain is dangerous too. And yes you are right that addictive personality types play a big part in this. It is why doctors are very reluctant to prescribe pain medicine even for recovered alcoholics.

I read the Spoon Theory from start to finish. It made me close to tears. It describes how we all deal on a daily basis. I say that I accept my condition but in my hearts of heart, I know that I have not. I know that total acceptance is crucial in taking the steps to manage chronic conditions. Just when I though I have accepted, the thought of me being healthy --- making major decisions for a multinational company, traveling from 1 country to another, planning for more productive years and not worrying of simple daily activities --- will take me few steps back. I had accepted though that i could no longer wear stiletto shoes, which I love too much; i could no longer wear tight jeans or signature dresses because it bothers my skin, but mostly, I feel my medical conditions have robbed me of the person i used to be or the kind of person I still want to be. Retirement from work has never been in my plans, but it happened. Now, the pain loses my interest to dress up. How can you be encouraged to dress well when your skin is firing up with the touch of the cloth and you cannot stand too long or you cannot breath properly? What upsets me is the fact that why is there no medication to this pain or why cant there be no cause to it???

I am trying not to air out my sentiments here. I keep my emotions within the corners of our home but holidays makes me more frustrated for not being able to do more. Its going to be my birthday on Christmas day and i pray everyday that He gives me the gift of healing. Being Catholic, I hold on to my faith and so far, its the one that keeps me going and of course my husband as well.

I have seen and read the Spoon Theory years ago. It is so true. Thanks.

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

Charcot-Marie-Tooth Syndrome (CMT) is also known as Hereditary Motor Sensory Neuropathy (HMSN). CMT has also been known as Peroneal Muscle Atrophy. It affects about one in 2,500 people. CMT is the most common "inherited" neuropathy. CMT can vary greatly even within the same family. If you have CMT, symptoms can become evident when you are young, old, or in-between. Or symptoms might never be that evident but you still can pass it on. CMT is misdiagnosed even today as polio, Fredricks's Ataxia, etc.

CMT is progressive (usually slowly) causing deterioration of peripheral nerves that control sensory information and muscle function of the foot/lower leg and hand/forearm. However, not every CMTer has their hands affected or vise versa. Sometimes it is surgically treated. However, brace first and then perhaps surgery depending on the problem.

It may become worse if certain neurotoxic drugs are taken. It causes foot drop walking gait, foot bone abnormalities, high arches and hammer toes. However, some people have flat feet or even normal arches and not all have hammer toes. There are problems with balance, problems with hand function, there can be lower leg and forearm muscle cramping, loss of normal reflexes, and sometime scoliosis (curvature of the spine).

There is no treatment at this time. No magic bullet; supplements, pills, etc. Physical therapy, occupational therapy, and moderate physical activity can be beneficial. If you overdo you can exacerbate CMT. No pain, no gain is not the way to go with CMT.

CMT is usually inherited in an autosomal dominant pattern, which means if one parent has CMT, there is a 50% chance of passing it on to each child. Depending on the type of CMT - and there are many - it is inherited in other ways.

CMT is a complicated syndrome. Much research is being done. It is under the umbrella, as they say, of the MDA along with about 40 other orphan diseases.

Reputable sites are always a must when trying to learn about CMT and then one will never understand it all anyway.

Jean-Martin Charcot, the Father of Neurology is a fascinating person to research. There is much to learn about him.