feeling miserable today
 

Just yesterday or the day before yesterday I posted here that my PN is improving - but today - again - the feeling of pins and needles all over my body, dim burning pains in my muscles - especially in my arms. burning feet.
I don't know why it is starting again. Why do I have these flares from time to time? It is so confusing. I don't want to go to my doctor every 2 weeks and complain about my symptoms. I know he can't do anything for me. I don't take any medicines since my regular status is that I can bear the pains. But when I have these flares - it is so upsetting that I don't know what to do. I don't want anymore to share this with my friends since they don't understand me and the kind of ymptomes I have. I think that only those with neuropatic symptomes can understand this situation.
For those who forget - I was diagnosed as idiopatic SFSN maybe of toxic origin or type of sensory GBS. suffering already 3 years.
Please - give me an edvice what to do... say some calm words. I need your hug.

:hug::hug::hug::hug::hug::hug::hug:

Are you under some major stress right now? That can bring on flares BIG time.

And you say you don't want to tell friends.
How come? Have they not been supportive? Can you not share this with ANYONE?? How about family?

I know that people don't like to hear others complain all the time, but sometimes, when we are having a bad day, it's nice to be able to call up SOMEONE and say "i'm in a lot of pain and I sure could use some telephone company, or maybe you can come over, and I'll make coffee".

Is this not possible? Sometimes, when we are in pain, we have to find ways to have our endorphins kick in. I choose humor. Alan and I laugh all the time. He is in pain every day with his neuropathy but because we try and find ways to get his mind off of his pain, well sometimes it gets a bit easier. It doesn't dissapear. He jus learns how to manage it.

For example last night. He was sitting at the computer. He says "Melody, what's it doing outside, my feet are killing me" I went to the window and saw that it was beginning to rain, it was damp, and I said "oh, it's starting to rain".

Now if it was a hard roaring rain, he would have been just fine. But in the beginning of a rain, his feet go nuts.

So I just went over, massaged his shoulders, gave him a hug and he said "thanks I feel better".

Is there no one that can do this for you?

Melody

Dear Melody

You have mentioned rain. Maybe this was the couse for my new flare - it was rainy last night...
About friends and family - they are supportive, but I don't feel like being the one who complain all the time - I preffer to be the supportive mate. Friends are coming to me when they need helping figure...So, it is a kind of taking a position in a movie. I'm not sure I can change it so easy.

Hi Rina, i agree with Mel, emotional factors & the weather can affect the nerves big time, steriod type meds was one that aggravated my nerves, even nerves healing can give episodes of flaring as well, but while you can manage your PN when its not flaring i would consider asking my doc for something to help you through those rough patches when you do need the help of meds.

I hope it settles down for you soon.

Brian :)

Rina:

One of the things I have learned (at the ripe old age of 61) is that I CAN CHANGE. And I'm not just talking about weight, eating well, etc. That's what we all should do. But that takes time, support systems, and being educated.

What I'm referring to is the ability to LET OTHERS BE IN CONTROL FOR A CHANGE. When you are the one always helping others, and not letting them help you for a while, this means a control issue. It's hard to sit back, chill and let someone else be in control, take over and say "what can I do for you"??

I bet you haven't done this, right?

This is very hard to do. But once in a while, it's good to pamper oneself, and believe me, IT'S A GOOD THING TO LET SOMEONE ELSE help us.

Why? Because they should. They learn from it. They learn how to be human. To be a helper, to give empathy.

If it's always YOU who is doing all the helping, how do others learn to do this?

So if you can, think about yourself for a bit. Let someone else pour you a cup of coffee; let someone else say "what can I do for you today?"

It's hard to let go and let others do this. But once in a while it's good for our soul to be nurtured.

So try and let yourself be nurtured, comforted, whatever you need to have happen so YOU can feel better.

It really does help others to learn how to empathise.

Give it a shot.

Hope you feel better.

Melody

It seems that's when my pain is the worst: In the winter when it rains. Summer rain doesn't seem to cause the same symptoms for me. At least not to the degree I suffer in the winter. I don't do cold well either.

:hug:

Hope you feel better quickly. It's bad enough dealing with a chronic condition, it's worse when it's a silent condition that other people can't see. And there are times it feels overwhelming that make it worse as well. Most times I cope pretty well but I have days like this too. You're not alone.

I find rapid
 

changes in barometric pressure...either way, up or down, and
I feel off kilter. A rapid fall can induce pain for me.

A rapid up, makes me feel shakey and nervous.
http://www.healthcentral.com/osteoar...-27504-63.html

My husband is the reverse of me. He feels awful with high pressure, when I feel best. And he feels better with lower.
(sinus he says).

I feel best with high pressure sustained. I feel awful with very low pressure. But any rapid change and I can feel it also.

For me the pain (ever present) depends mainly on the amount of physical exercise - more exercise, more pain, but that is not surprising given that the root of the pain is softening of spinal cord as a result of compression. Secondary factor is psychological mood, this not a good day for me either.