Question for those with RSD for 3 year or more

[mbrfz]

Hi guys, I am entering my fourth year, there is very little information on what is going to happen from here on out. So far things have not been going to well. I am on oxycontin, percocet, bacolfen, soma, ativan, trazedone, ketamine boosters,topamax, neurontin, and my gel.
I am with all of this at a daily level 6 pain. never below. Often or atleast part of each day it soars to a level 8. the tissue loss in my right leg ( my orginal leg injured)has continuing atrophy, the sweating has continued. The spasms have continued, the spinal pain is so severe, the left arm is still unuseable meaning if I do use it, I pay dearly.
I have all the horrible compllitcation from the meds. And I have now lost 36 pounds rather quickly as I am always nassauated, I take zofran for that .

The pain has moved in to my teeth on the left side- it was in my left ear- bright red flareups and is now in my right ear as well.

I just had a cervical nerve block that did nnot work. I am trying to find out where things are going from here, where are you if you are in year 4. whats happening if you are in year 5 or 6. I still fight the depression. I try to walk a few blocks a few tmes a week, but other than that- at the grocery store i am in the riding cart. I am basically home bound, except for visits to nearby family for short visits.I still have severe sweating, terrible charlie horses, and wake up every two hours with pain through the night. Is this the way it is going for you?

Generally I do not have many out ward signs except during flare ups where I will have signiifcant swelling in knees, left arm rashes, red swollen ears, blue legs, I am always freezing even if it is 90 degrees out. Any magic out there, does anything get better, or do I need to prepare myself for it getting worse if that is possible. Thanks, I really neeed to know where everyone esles is. thank you, mbrfz

[AnnBon]

Hi,

I am also almost 4 years with RSD. I take very little meds. My course of therapy is Ketamine Therapy. It really has put me in remission. My pain at most times is around a 3-4 sometimes even a 0. At one point I was on many of the same meds you mentioned. I at times still have 10 plus days demands on weather, activity etc..Good luck. Seach out a better doctor for RSD.

Ann

[mbrfz]

Anne, thank you for your reply and I so happy your are doing so well. The ketamine has helped me a great deal. I was in 8-9 pain everyday. getting towards a 6 and being able to go to a therapy pool almost everyday is a huge gain for me. I just have a body that wants to hang on to this disease with its life. But im trying desperately to beat it. thanks for replying. Lisile

[Sydney]

Just curious as to what your "ketamine Therapy" is that is helping you so much. Is it the IV therapy, meds, etc? I tried oral ketamine on tongue, nose spray ketamine, gel w/ ketamine. None worked. I am not a candidate for the IV.
Glad you are well.

Sydney

[EJK]

mbrfz,

Have you been evaluated for a pain pump? It is really difficult for us to share specifics because what works for one may not do any good for the next.

EJ

[mbrfz]

EJ, Hi, I have not been offered the pain pump. I belivie it is because the rsd attacked a port that was implanted for my ketamine infusions. Dr. S told me at that time that my body from this point forward would not tolerate implants of any kind. I live in fear of breaking my leg and requiring a pin or rod. As apparantly the rsd will attack anything now. I can not relate the additonal pain I was in when the rsd moved in to the port site. I had to have emergency surgery to have the port removed one month after it was put in. I would welcome a pain pump if I could have one as I hate taking all of the meds almost 24 different pills a day. Thanks for the suggestion, do you have one. Is it helping?mbrfz

[EJK]

mbrfz,

Unfortunately, it is true that additional injuries, surgeries, etc., can become the future targets for spread of this monster. Over a two year period from 2002-2004 what started as lumbar, leg, and foot pains, following a lumbar discectomy at L5-S1, spread out into systemic problems for me.

My pump has been a tremendous help with the lumbar region pain and I would recommend it to anyone when all else has failed. However, since the RSD spread and brought with it other complications and issues, I still require many medications that I thought would no longer be needed...One step forward, two steps back; but never, ever give up!

Best regards,
EJ