not pots

[aPerfectCircle]

hi everyone.

i finally got a dx. i have "central pain syndrome" which is basically nerve damage around the thalamic area of the brain usually cause by stroke or MS but for me it was electric shock therapy from years ago

so yeah. its another one of those medical problems doctors turn their heads away from, i've been to four neurologists, each of them took one look at my history and referred me to a psych without bothering. its also another untreatable problems, the only sort of pain that doesnt respond to opiates.

they told me dysautonomia symptoms are part of it too.

so yeah, yay for me, i'll be burning in **** for the rest of my life.

xxoo APC

[Deb]

I don't know anything about your new dx, but I'm feel pretty certain that you aren't going to burn in **** the rest of your life! You must have had the same nuns in school that I did. I'll try to do some research about Central Pain Disorder. I sure hope that having a dx will at least put your mind at rest. One of the worst periods of my life was when I didn't know what was wrong with me. Now I understand some of these strange things that I feel.

Keep your head up high, and remember that autonomic problems wax and wane, and you'll have some good days again. I hope this is one of them!

[goldicedance]

Dear Perfect Circle,

Don't take your diagnosis as the kiss of the evil vampire. Deal with things that you can control. What is, is. But make the most out of what IS!

You'll have good days and bad days. We all do. We are with you for support in whatever way we can.

Live life to its fullest!

Goldicedance

[ethansmom]

Well, the good news is you have a diagnosis- and don't be so hard on yourself, I'm certain you are not going to be in **** for the rest of your life. While I don't know anything about this condition, I can say that being pro-active with your treatment and not taking no for an answer is about the best thing you can do, in addition to keeping a positive outlook. Do as much research as you can- maybe you will find information that will help you, and even stumble across a doctor who will not turn in the other direction. We can only get stronger form the experiences that we have in life. Take care

[MomtoGiuliana]

Congratulations on finally having a diagnosis. That will help immensely in managing your symptoms.

I agree with the above posts! Please don't condemn yourself, although I know that is so much easier said than done when you are feeling poorly.

Have you read Spontaneous Healing by Dr. Andrew Weil? It is a helpful and hopeful book on general self-healing. The body and brain are amazing, as his book demonstrates, at over-coming enormous challenges. I have turned to that book several times and found it helpful and comforting. Also, I like Pema Chodren--When Things Fall Apart--Heart Advice for Difficult Times. This is more of a spiritual support, but keep in mind how strong our minds are at convincing us of all kinds of things, some of which do have ramefications on our physical health.

Best wishes--and I certainly hope the good days far outnumber the bad for you.

[MightyMouse]

APC, glad you found a doctor who cared enough to find the diagnosis that fit your issues. I hope that it helps you feel a bit more at peace with what's been going on with your body.

nina

[Deb]

I just realized that when you wrote you would be spending the rest of your life "burning in ****", you were reffering to the burning you have been experiencing from your illness!!! I looked up in Google and got this link http://www.ninds.nih.gov/health_and_medica...entpain_doc.htm about Central Pain Syndrome. That's when I remembered you had written about burning up and being real hot. So sorry I didn't pick up on that sooner.

After reading that info, I see why you sound so low. Hopefully you have a mild case of it. I'll keep you in my thoughts and hope that you'll be doing better soon.