rsd has spread through entire body
 

i to am scheduled for 5 day inpatient stay ketamine procedure.not sure what to expect,pretty scared,my wife is totally against me having it done.its just what started out in my foot has totally taken over my body with pain. i get up taking pills, go yo bed taking them,along with the day daily dosage also.going on eight years now.pretty much tried every thing.been black balled by local doctors because of mirenol useage failed a couple of urine test.came up positive. not gonna lie, it really help me sleep at night,tried to smoke,it made the burning worse,but at least you were in a good mood, an you eat,i use to weigh 180 dropped down to 140 with all the meds,the smoking gave me the munchies,made you feel good angot my weight back,along with kept your mind off the pain.the doc, are totally against anything they can't make money off of.since i stopped because of having to find a new doctor,its just pain all the time,really sucks.

ketamine
 

Where are you having the procedure done? I had the 5 day inpatient. It wasnt too bad. Tripping but they were good trips..If you have any questions, pm me

Debbie

Hi bigsav and welcome, Hope you find the compassion and support I have here. Friends here are so willing to share and have a lot of combined education. Know we will be thinking of you during your procedure. Please let us know how it goes when you are up to it. I know there are others considering the 5 day inpatient treatment.
I had the opposite gained over 40 lbs due to meds-3200 mg of neurotin I think the most for spasms, electric shocks etc. I'm working hard to get it off.
I'm not familiar with mirenol, but I have several ways I use for distraction. Music, meditation, visualization, journaling,exercise, reading, just starting a new hobbie-photography, keeping in touch with friends here on NT and friends in my life. I also have been seeing a psychiatrist for 6 years that have helped me with losses we get with RSD and he has been wonderful getting me on the right meds to reduce the pain and be able to sleep. I also belong to a local support group. RSDSA has a place where you put in your zip code and gives you closest support group.
Take care, and hope for the best for you, one of your new friends, loretta with soft hugs :grouphug:

Hi,
 

Marinol is a medical marijuna that comes in the form of a pill, patch or inhaler.
I have heard of it for years but have not heard of anyone taking it. It is used for cancer patients and aids patients. I've often wondered why it hasn't been used for RSD patients.
My Dr. mentioned it to me one time but I can't remember what the conversation was about. I have heard it mentioned here in Colorado on the news. It's sure not talked about much.
I have lost 2 sisters, a brother to cancer and have one fighting colon cancer now. I have lost 29 relatives to cancer and not one of them was on the Marinol so I wonder how often it is used for anything.

Bigsav, hope the ketamine works for you. I have been blessed with good medical help but it took us years to get my pain level down to where I didn't want to kill myself. I do remember what others are going through now. I still have the pain, today in my chest, but not like some of you are going through right now.

Ada

Hi Ada, Thanks for the information . I am so sorry your brother is fighting colon cancer. I, too, have it in my family. In fact, I cared for my mother, age 46, during her last months of colon cancer. She died this month in 1973 and I was just thinking of her pain - I gave her morphine injections-that didn't touch her pain. There wasn't hospice back then. I was able to care for her until the last two weeks-then hospitalized. My worst pain is in the morning- and I was mentally thinking of her pain and how I feel this morning.
I, too, have a wonderful Dr. who has got me on a mixture of meds that has brought me out of the place you used to be in. Flares are bad, but for the most part the late afternoon and evenings are tolerable.
Take care, your friend loretta:grouphug:

I was scheduled for Nov. 15th but just heard it has to be rescheduled, I'm praying soon as the weekly ER visits are getting to be a nightmare and nothing controls the pain anymore. My fiancee and other's have suggested medical marijuana but I've balked considering it took me 23 yrs to quit cigarette smoking and never tried marijuana.


I hope that those of you have had the 5 day in patient have had some relief. I too am getting more nervous as it draws closer bigsav so you're not alone there. Maybe your wife needs to read up more to understand that it really isn't risky, certainly not like the coma form can be. I do wish you all the best with it. Are you having it done in NY?

Dawn

hi, deb,want to say thanks for responding. im scheduled for DR. SWARTZMAN in PHILLY. comfortable with him an the staff,just nervous about the procedure.

thankyou, an, thanks for correcting my spelling. LOL,an i did get it from my brothers wife who battled with cancer,now has past away. pretty much got what she had left over,it did wonders for my pain

thankyou, also, its good to vent to people who understands what your going through.will be talking to you again.

hello DAWN,thankyou, going with DR SWARTZMAN in PHILLY,I have all the confidence in him an his staff, just nervous of the procedure itself. Don't know why since i've had the dorsal column stimulator three times. that was some pain,infected all three times. now everything out,pretty much meds every day

Maybe I'll see you there! :p I'm doing my 5 day in patient with Dr. Richman and then my outpatient boosters with Dr. Schwartzman since I'm closer to Philly and Dr. Richman doesn't do them.

What date are you going in?

ketamine/marinol
 

I have a medical marijuana card, thats how they do it here in WA and OR, it helps me sleep more then 2hours, helps with the nausea and reduces the sensitivity in my leg. I have great Dr's here and my pcp actually recommended me to the marijuana clinic. I have seen 7 Dr's and the 3rd one knew it was RSD and referred me to the other 4. They have been miraculous in the reduction of my pain and with just basic human assistance. I still have a lot of pain, but it is less edgy stabing with the marijuana. We also have great weather her its mild and its helpful for less pain with my RSD. We rarely have more than a week of snow or temps below freezing. i hope your procedure goes well, I am not very knowledgable about that.

rescheduled me to the mid month of november due to the fact that the insurance co is now running me around to several of their docs,who believe theres' nothing wrong.its amazing i take 600mg neurontins every 4 hours to keep me out of hospital. the burning is that bad,may sleep 4 hours a night if that,i still have to prove myself to them.it was amazing how DR.SWARTZMAN,when examining me pick up on all my symptoms right away.i literally cried right there on the spot,eight years,millions of doctors,and five minutes with him,i didn't have to go to the extreme any more.i think my tears were,tears of joy.just was happy someone believed in me.

RSD & marijuana...........
 

Am & have been prescribed Morphine ER, 200 mg's 2 x's a day, along with Hydromorphone, 8 mg's, up to 3 x's a day as needed. Also take klonopin & baclofen for muscle spasms. I'm subjected to urine tests, normally every 5 to 6 months, but "on the sly," have tried marijuana a couple times a day, I reside in Iowa, where it's still illegal, but when using, I've been able to cut my pain med use almost in half. I'm afraid to mention this to my 2 pain docs, not wanting to be cut off, but am now having liver trouble, high enzymes, I'm wondering if I'd be better off using marijuana, again "on the sly," hoping & timing it, praying I don't get caught. Any suggestions ??