RSD Where Are Its Limits
 

For those of you who remember me. Heres a bit of an update.
RSD Where is your limit? Sadly i am finding it has none. If it is not enough it has control of my eyes, nerves around my heart, chest wall, hands, knees, and left foot, as well as the main nerve in the stomach my rsd has now decided to claim my digestive system as its own. The starting of this kicks off my 8th occurrence/continuation of my RSD. I am only 18 and started with this when i was 13. This Disease is outta control and destroying me. And i still dont get to see Swartzman till the 10th of September. I will be lucky if i am even alive by then. As its made it i have no fat left at all and this is no joke, its eaten away most of my muscle and i survive by going into the hospital and being pumped up full off all differnt fluids to stabilize me and then leave and than return again.
All the doctors i have seen about RSD assure me there has never been a reported case of anyone dying from RSD and assure me its not possible to. Well i think its pure BS!!! RSD is your puppeteer and you are its puppet there is no question to that. It will keep you just barely alive just to torture you. And anytime it wants it can pull your plug.

And so onward i go, i am not giving up but sadly there comes a point where you have no choice in the matter.

you might find this interesting. It was not RSD, but sometimes doctors don't know everything. You know yourself better then anyone.
http://melsreallifedrama.wordpress.c...s-young-woman/

First and foremost I am so sorry for your suffereing- it is so severe. And yes, I do have a freind that has RSD full body too(as I do)and has the severity of problems that you do.
I am glad you are getting closer to your date with dr. S- he is my doctor. You will probably never meet another physican with so much compassion. He is very kind. He can look at your instantly and see your pain, the source, understand it and begin to try to help you. He is a very talented neurologist, spent alot of his career teaching others.
So your heading in the right directlion for help. Do you have alot of burning , alloydina? Or have you passed that stage? The ketamine infusions help a great deal with that part of RSD. Keep us posted. Hoping the best for you, try not to despair- I know you are suffereing. Sincerely, CZ

dr.swartzman is in philly right .. can you tell me the phone number.. i no how you feel .. hang in there

Dr. Robert Schwartzman
Chair
Neurology
New College Building
245 N. 15th St
Philadelphia PA 19102
Phone: 215-762-7090
Fax: 215-762-3161
Email: robert.schwartzman@drexelmed.edu


Best wishes...
Abbie

Hi LordWood,

First of all I am so sorry for your discomfort and sad feelings. I know how you feel I have been there so many times in the past. I truly hope you feel better. I also see Dr. S and he truly is a compassionate man and Carol his secretary is also very helpful.

Good Luck,

An

I'm sorry to hear about everything that you are going through right now ((pain free hugs)), I really hope you are feeling better. I don't understand what you are going through. I have never seen Dr Schwartzman as I am from the UK but from what I have heard and read he is a very compasionate and caring doctor so I am sure he will get you on the right track.
I am keeping you in my thoughts and prayers and I wish you the very best..
Please keep us all updated when you can
Alison

Hang in there! I am scheduled to see Dr. Swartman in 10/08. However, he is very far away. I am not sure whether or not i want to fly there from the west coast since i have profound limited sitting abiilty.
Best wishes to you and i will remember you in my prayers.
Numb

Hi LordWood,
I have no idea what it must be like for you and I am very sorry that you are going through all of this. I wish you would feel better and good luck with the doc.My prayers are with you. Hang in there. We all care. Update us when you can. Take care.

Sincerely,
Screwballpookie

Thank you to all.
 

I would like to thank all of you that have written to me on here it means alot.
Sadly things just worsen as each minute passes now my doctors in my area have given up on me and tell me just to wait till i see Dr. S. Well heres the problem with that, they know and i know i will not make it till than...Literally.
For all of you all i can say is keep fighting for most of you either Swartzman or Sherry will fix you. And be grateful for the family and friends support you have.
As long as you have them the puppeteer (RSD) can't fully control you. Its only once you have lost it all that it starts to take control of everything. We must all believe that one day they will find a cure for all of us. But until than show the world and this puppeteer what your made of. I believe each one of you are stronger than you know. Your dealing with something just about all other humans could not even imagine or even deal with. You deserve respect and support.

Some how we do make it
 

Lordwood, somehow we do make it to the next moment. when i think of some of the pain i have delt with i am astonished i have made it. there i no way to describe it. I fell asleep in my wheel chair last week for 4 or 5 hours. I slouched to the right. the pain in my right arm from pressing on the metal arm of the wheel chair was shocking- way beyond a 10 it was a 100. How I llifted myself through that pain I will never know- I still have a large ball in my right arm and can barly touch the spot- thats called something in rsd- hyperglasia or something. no one but one of us will ever understand the depths of pain we go to. Do hang in there some how we do make it. I have anyway and I am astonded each day that I have. A new med has helped me Opana er, have you tried it? I take 40mg am and pm and of course many breakthrough meds through the day. but it is the best base line med I have been on. hang in there. CZ

Here's an unusually informative Wikipedia article on the underlying drug - Oxymorphone http://en.wikipedia.org/wiki/Opana

thanks Michael, I hadnt seen this
 

Thanks Michael I hadnt seen this, but this has without question been the most successful baseline med I have ever take. It lowered my daily pain level from an 8-9 to a 5. My quality of llife daily has improved immensly although I still have breakthrugh problems and require oxycodone 3 times a day. But I have a rather severe case of rsd. My biggest loss was being allowed to drive. I can not and do not drive on these meds. Very upseting but well worth the daily pain reduction. I do hope anyone suffering as Lordwood is will try this. When it was finally givie to me I was in crisis last december, they tried everything first, fentynal etc. Nothing was touching my pain. Then within minutes of taking my first opana, a slight exaggeration, I had my first end to a 6 week flare of excutiating pain.Thanks again for posting this link. CZ