Chronic Pain

[fireball]

oak1day,

are you saying that myostis is connected to rsd in some way
my body is doing what it wants to and right now it is pretty scary--when i wake up iam in a delusional state, iam extrememly fatigued cannot stay awake or have a conversation with anyone. i pass out for brief seconds during the conversation and then start talking about something else. we have only seen this behaviour in me during the period of the cellulitus

anyway let me know

cheers!!!!!!!!!!!

[oak1day]

Hi fireball.

I posted about what goes on with me, and you told me it was rsd. So i was sharing, (as I thought I had already) that I had a diagnosis of dermatomyositis. And I was asking if you were suggesting that I did NOT have DM but had rsd instead, or what. I was seeking clarification, because you said word along the lines of "what you have is rsd".

Sounds like we are getting our wires crossed here. Anyway, please do the best you can to take care of yourself and I hope you feel better....

oak1day

[fireball]

oakday1

sorry--sometimes i lose my mind i was writing to you as my 19yr old was tellin me she is getting married.
so do you have the dm(?) and when you said they did a biopsy what was the biospy of
im going to look up your condition but if you can will you tell me a little about it---im curious as its symptons are like the rsd
I have to admit i have been away from the site for a while--i had a spinal cord stimulator inplanted and recovery was tough the scs has helped but im dealing with loss of conscinious at times it is real scary as i can be holding a cigarette and and pass out for seconds. we have no idea what is casusing it
today has been an extremely depressed day i really felt hopless(all i can do is sit in a chair) believe it or not your response to my post snapped me backed to somewhat of reality and that there are others out there suffering from rsd and other things. you could of just said hi just seeing there was a response in my email made my day im really tired of rsd and everything that goes with it i hope you are doing well and please let me know more about your diagnosis

cheers!!!!!!!!!

fireball!!!!!!!!!!!!!

[oak1day]

Fireball,

Congratulations on your 19-yr old. My son and his longtime girlfriend just had their child in August, so I can kind of relate to getting not-necessarily-the-news-I-was-hoping-for, and it turns out MUCH BETTER than you can imagine sometimes.

The biopsy was done of a rash I had on my neck at the time. Although my dermatomyositis does not present in the classic way in some ways, I have since had that biopsy result and diagnosis reconfirmed by 3 dermatologists. There were what can, apparently only be interpreted as "dermatomyositic changes". So in their minds, regardless of the fact that I have pain and other neuropathic symptoms, I definitely still have dermatomyositis. It's just that not that much is known about the disease. It is definitely not, as is often said, "myositis with skin involvement". It is a different disease entirely, as it affects blood vessels which in turn affect skin, muscles and the different body systems. This is different from myositis which directly affects muscle cells. The effects can appear similar, so when looking it up on the web, you will often find that simplistic definition quoted above.

My question to you was regarding the possibility of also having rsd, as I am always searching for a way to understand the manifestation I have since not that much is known about the disease with which I have been diagnosed.

Sounds like you have been through an awful lot. I must say, considering how much neuropathic pain I have experienced, the idea of implants around my spinal cord to help pain is pretty scary. That must have taken alot of courage and you must have ahd alot of confidence in your doctors as well as great pain.

I hope your day, this day, is a good one for you.

oak1day

[fireball]

Oakday1, i am still overwhelmed with her getting married she's so shy i have to pry information out of her she's one of those that cares about others before herself being that i am off work i am sure she's been thinking how we can afford it. my w/comp case has a trial at the end of this month and it sure would be nice to get all my back pay and my ttd started again my husband is slowly coming around to the news its his baby
anyway, do they think your pain has to due with the rash? if i could ever figure out how to put pictures on here i would show you one that looks like i have a rash
i went to the infectious disease doctor last month because of the ulcers/sores he does not know what is casuing the infections
if your pain is in anyway like rsd i would diffently find a doctor who knows about rsd so many do not
do they give you any medication for the pain it seems like they want to ignore what you say about the pain
I honestly dont remember how you got the pain or rash so you have to reinform me--my family cant wait until the day i can remember from one day to the next

keep me updated

cheers!!!!!!!!!!

fireball

[oak1day]

No,

I am not saying that. I thought your original response to MY post was suggesting to me that I might have what you have. That's how all this got started.

I am sorry you are going through this and hope it lets up some soon!

oak1day

[kkenai]

there is hope. I have been in slowly increasing pain since the mid 70's. I was diagnosed with Reflex Sympathic Dystrophy in 1988. Since then it has been quite a ride. I don't know where you are but in Anchorage there is a pain clinic run by a Dr. Leon Chandler. He diagnosed and treated me initially. He is very good. Also if you go online and search for rsd there are several RSD groups that are very helpful. One is for Dr. Hooshang Hooshmand, he is located in Florida and is recognized as one of the leading Pain Guru's in this part of the world. I have never been able to get to his clinic but have heard great things of him for years. He may be helpfull to you..... I am having severe problems of late. I am on a combination of Neurotin, Lyrica, Tylenol, Feldene, Oxycodone and others. Lately no being able to get Oxycodone due to the Government ban has been unreal.

Good Luck my friend,

Bob
Washington

[macca]

I have the burning pain like you have, the doctor has put me on Lyrica, if you would like some more info, please email me

[oak1day]

Thanks. I have tried Lyrica and it made me too tired to do my job. Best to you.

[fireball]

lyrica worked somewhat for my burning pain but it also put 30 pounds on me!!!!!!!!!!!