Hi, Deja,

No auto bed here, so I don't think I'm exposed to the issues you raise.

Thanks for your good wishes. I'm at the beginning of things. Fear and panic are my new best friends. It appears that getting sick like this is a good way to find out what kind of a gutless coward one really is. We'll have to see how I do on that score.

Again, thanks.

Nerv.

Hi sorry for your dx and pain. Not in my foot but I often times get such a tight feeling in my calves where it is hard to propel.I am on meds though which you don't want to take but if you change your mind a muscle relaxer may help or even like ant anxiety med that relaxes the muscles. For me it is important to have the right amount of activity and this is a learning process. Where I do enough that I don't become so stiff but not too much where the pain is out of control. I agree with the magnesium. The other supplements I feel are helpful is calcium with d and vitamin c of course the multi. I have read and on here too about omega 3 bring inflammation down as well if that could be also contributing. I don't enjoy this but most people like epsom salt baths too. Sorry this is all over the place. Hope you feel better

[QUOTE=Nervous;673891]

Heredity? My brother has MS.

I always understood that dead or damaged nerves could not be restored. This site seems to argue otherwise. Now, I don't know what to believe. Hmm.
]/QUOTE]

Hi,

MS is an autoimmune disease (body attacking itself).

With an inherited syndrome such as CMT, there is nothing that will restore dead or damaged nerves.

I hope you find an answer.

Hi Nervous!

I am guessing you will find you have great fortitude! :D
Not feeling well, obtaining rather frightening diagnoses, being reminded of how fragile life can be and how susceptible we each can be to many conditions, is apt to cause us all some anxiety! :winky:
I am guessing we were all extra nervous at first.
It's often helpful to be interested and watchful as you figure out just what is going on for you! :D
Many of us may still get nervous when/if new symptoms arrive on the scene, etc. In time, you will learn to take some of this in stride though. It will never stop being a concern; yet, you will adjust to this a bit. None of us can stay ultra nervous about any chronic condition and manage the stress well.
Please don't worry about how nervous you should or should not be... or how nervous you are... in time, you will find a more comfortable "zone" in which to operate for your daily functioning!
It's great, imo, you are being so honest in expressing your concerns! I think this may help you move forward in your strategies for honestly dealing with stress/anxiety. :D
Take each day as it comes and make it as great a day as possible.:)
We are all here support!
Take great care of you!
~DejaVu

Is PN Fatal?
 

You raised this question in your 1st plea to us and no one has answered it yet. I can't leave it open any longer....I'm new here and still learning about neuropathy even tho' I've had it 11 years. But this forum has so much knowledge that I want to see what others know or have to say on this hard part of our subject.

As my older neighbor friend used to say "It doesn't kill you but just makes you wish you were dead!" We used to say that about our arthritis....so far, what I have learned is that the sensory PN I have won't kill me. But I could develop autonomic PN at any time and that is dealing with the nerves that operate our inner body organs. Now a lot of people live with this all the time because there are ways to manage this except for only a couple of organs. If your lungs are involved, then you have a bad problem and could die. I've heard of a case of this and I guess is the same for the heart but have not heard of this. The rest don't seem to shut down completely but others may add more to that....

I don't want to dwell on this but can't leave it out--what % PN patients committ suicide because they can't stand the chronic pain and don't/can't get sufficient pain relief?

What I have to work on is what causes my PN---glucose problem, have to keep control on that because complications from diabetes, heart problems could eventually get to me. I recently had a bunch of heart tests because my routine EKG was done, had been 18 yrs. Something looked a little off. My heart is in tip-top shape, that is what my "normal" EKG looks like. Now I have to remember that! (But I am so relieved and happy, walking 1 mile does pay off and not even so much, average 1-2 times a week!) I also take a statin low dose, cholesterol is genetic.

Statins are known causers of PN you know. I hope you are supporting your mitochondria with CoQ-10 and acetyl carnitine!
I hope to be making my "statin" post in the Subforum sometime this week.

i seriously doubt that any statistics are kept on the percentage of people who commit suicide with pn related pain. i dont even think that statistics are kept on the reason why people commit suicide in general. those type of statistics would be very unreliable even if they were kept. who is to say what really finally drove someone over the edge.

i only know of one person who had pn and who subsequently died of it. even with this person i dont know their whole medical history and what else they may have been suffering from.

Thanks to all. Your various comments are very encouraging, especially since I am not sharing my diagnosis with anyone that I know at this time.

I didn't push mrsD on the issue of degenerative, progressive and/or fatal because I figured she preferred not to get involved in all that. When my doctors have nothing but bad news, they always dissemble about the bad news and say, "We don't know what will happen to you." Anyone can appreciate why they would do that, but, frankly, it's not what I'm paying them for. In any case, I don't have any right to importune mrsD.

Today, I went out and bought some of the supplements recommended on this forum, i.e., B12, B6, CoQ10, Folic Acid, D3, calcium/magnesium (both in one pill), and Omega-3. I'm guessing on the doses and, in some cases, following the recommended dose on the label. I think it is probably a mistake to add so many substances at the same time because I will not know which one, if any, is working. On the other hand, I don't think I can spend six months at a time testing each individual substance.

For two out of three nights, I've been lucky with foot cramps, perhaps because I have been taking 400-800 mg of magnesium citrate. Last night wasn't so great. Mild dehydration might have been a factor.

My symptoms are pain, foot cramping, numbness, tingling, and burning. New sites on my body are occurring each day, but for the most part we are talking about hands, legs and feet. My rheumatologist said I have some muscle atrophy and some loss of reflex, but I'm not aware that it is significant or necessarily related to my sm. fib. neur. It goes without saying that I have fatigue and anxiety, but generally speaking the rest of my health is good for the moment.

If my small fiber neuropathy is going to come to affect my autonomic nervous system and/or my vital organs, that would change the game considerably. I need to know this, so if someone can tell me, please chime in.

Lying in bed awake at night and feeling my body's pain is one thing. Knowing that there is no effective treatment for the pain (except drugs with terrible side effects, like neurontin) and no cure for the pathology is another, more suffocating, more frightening matter.

By the way, I'm a little embarrassed to be so self-absorbed in this company. I'm sure there are others here who are suffering much more than I am. I'm sorry if I appear insensitive.

Nervous, my PN started when I was 30. I've had it for over 30 yrs. Mine is not progressing, but it is aggravating. If you look at your problem, as aggravation, rather than illness, it then becomes more manageable to deal with.

I use many tricks to help my problems. (I have arthritis too, which complicates the PN now in my older years).

Sometimes I use magnets, sometimes I get the Lidoderms out, I use Biofreeze gel often, I pick very comfy shoes, I don't do shovels or ladders, I use auto-relaxation and breathing exercises, and I do several supplements and follow the Zone diet, and avoid sugars. All of this has over the years allowed me to manage my pain, and aggravation. I now have to take levothyroxine for my thyroid. Sometimes I have to wear my hand braces to bed, if I've been working too much during the day.

You will learn to focus less on your PN and more on the process of protecting your body from further damage. This means watching alcohol intake, researching drugs that are offered to you and finding alternates for the most nasty ones if possible, and providing the diet and nutrients to help your body work better.

Our bodies are so complex, that they are bound to break down somewhat as we age. We are exposed to terrible toxins daily, and poor food options in this country. Each day I am grateful and thankful I don't have cancer, epilepsy, MS or some other serious problem like heart disease. The PN I consider aggravating and sometimes I do get fed up with it, but it tends for me to stabilize and not progress. Before I found the trigger of nightshade veggies, I was having burning going up my shins some nights! Who would think? !!:confused: MSG also is now hard on me, so I read labels carefully. I do have hypertension and that started around the same time as the PN, and I don't like the meds I have to take, but I take them. I have side effects from those that make me very aggravated some days.

But you do what you gotta do. Nervous give yourself time to "accept". We have to "accept" many things in life, and many of them are unpleasant, unfortunately. :rolleyes: