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Originally Posted by firegirl
I have been feeling horrible (worse than usual), for about 3 weeks now. I am stuck in the wheelchair and cant leave the house. I have RSD in entire right arm, hand, shoulder, and right foot/ankle, stomach, & heart. Sometimes I am able to walk small distances when not i a flare. My doctor temporarily doubled my Oxycodone 30mg to 60 mg 3 times a day....also take Oxycontin 30mg 2x day, Xanax 2mg x3 day, Cymbalta 30mg, Seroquel 600mg, Lamictal 100mg, Vistaril 100mg, Soma 350mg, Treximet, Compazine 10mg, Phenergan, Marinol 40mg a day, Zofran 8mg Dilaudid 4 to 8mg. I've tried all the blocks, SCS, pain pumps, PT, OT, aquatics therapy, chiropractor, Dynatron STS (moved to TX for 5 months to try this), HBOT, and I'm sure more that I can't remember. I've been taking it very easy, but trying to move around what little bit I can. Also tried epsom salt baths. The pain is absolutely unbarable. My doc wanted to hospitalize me for 3 days to get the pain under control with IV meds. He couldnt find a department that would hospitalize me for pain control. So, I went to ER couple of days ago to just get temporary relief w/ IM dilaudid & Ativan. My doc wanted me to get the ER doc to give me a shot of Prednisone & he called me in a script for Prednisone. The ER doc disagreed with the Prednisone, so I didn't fill it. He told me to only take the oral Dilaudid when thing get real bad. I just feel like I am om way too many meds, but I need them all, DON'T KNOW WHAT TO DO....PLEASE HELP!!! I have tried ALOT of other meds with no luck & also have horrible problems with nausea & vomitting. I am also bipolar, and have problems with anxiety and migraines.
I am not sure what has been going on the last few days. Normally I can take al my meds together & not look or act doped up at all. Well...last few days I fall asleep eating, talking, smoking, & while doing all kinda stuff. Mom almost called 911 for me last night bc she thought I was gonna OD. She said i tried to light a cigarette 3 times in 30 min. & still couldnt do it. I was just way out of it & was talking jibberish. Not sure wy this is happening all of a sudden. Only med I just started taking again is Marinol & it never used to do that to me.
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Firegirl, I am so very very sorry you are going thru this intense pain. How long have you had RSD? Sounds like you have tried everything possible. How did you like the HBOT? Tried Ketamine infusions? Mine started with frozen shoulder following breast surgery 15 years ago. It is now full body and internal pelvic region, painful bumps in ears, scalp. Have had lesions, lung infections, hear issues, It's a painful thing to deal with dailey.
Do you trust your Dr.? Is he experienced with RSD-med interactions?
My Dr. of last 6 years is a neurologist, psychiatrist, and pharmacologist. He just did a 200 person trial study, which I was on, on seroquel xr. It was for fibromyalgia patients, which I also have. I had stopped sleeping on ambien cr. would stay awake all night till 6am. felt terrible. On the study, I was on 300 mg. started sleeping 10 hours. went down to 150 mg as felt druggy on 300.
still sleeping 10 hours. You are on a lot of different meds. I know it's important to know interactions. Are you sleeping at night? My Doc says it is extremely important to have restorative sleep.
There is a website rsdrx.com puzzles list Dr. Hooshmand in Florida practiced 40 years, specializing in RSD. he was against opiods. I Take vicodin-most I took was 6 pills 5/500 8 during a flare and now down to 4 pills-with most days 2 pills. Take lorazepam 4 mg a day 2 blood pressure meds and 120 mg cymbalta. So I've actually gone down in meds. I've been in a place where I've asked my Dr. to change my vicodin to something stronger and he was against it. He did up the lorazepam which actually helped me with my nerve pain more than vicodin. Also used to be on two anti-depressants. One double dosed and one triple dosed. Now on cymbalta. I do keep to a healthy anti-oxidant died-mainly vegetarian, have kept mobile, even though very difficult. Been thru at least 150 pt treatments and over 200 massage treatments. Had frozen shoulder on both shoulders. Have one hand that is crippled, like a claw-wrong diagnosis and late pt treatment. One time my toes were curling up and Dr. had me in pool every day exercising toes to counter the curl. In 4 months my toes were straight touching the ground. I also Trigeminal Nerve Disorder, a ruptured disc in my neck and terrible headaches
I'm not trying to make you feel bad, but fight as much as you can to keep mobile. Do you have RA also? I'm suspicious of having it-so getting tested.
I was walking with a cane last week
I read a post here on NT the other day and a person went to the Cleveland Clinic for RSD-very well known for RSD and they took her off all narcotics.
RSDSA , the national organization, has a place to put in your zip code and will give you support group closest to you and phone number of leader.
We can get names of Drs. etc. from local friends with RSD. Have you ever talked to your pharmacist about all your meds? I know some call large hospitals and ask for head of neurology dept. Ask about RSD. Have you seen a psychiatrist for help in coping with this monster. When I was diagnosed with full body or generalized 6 years ago, the neuro suggested I see a psych.
I knew he was right-I had 2 plus years of psychologist help when my parents died 30 years ago. and it really helped me.
I've read your posts and can tell you are a giving, caring person. My heart aches for you. I know meds are a personal decision-some don't take opiods, but I would say most of us do. I have never gone off- I usually take 2 in the morning-my worst time. We are all so different. The McGill Pain Index on a scale of 1-50 list RSD as 42-that is above amputation. So it is recognized by the medical community, those that know about it, as a very painful disorder.
Have you had a flare this long before? Please let us know how you are doing. Stay with us and maybe something someone says will be a big help to you. I enjoy your posts. One of your new friends, loretta with soft hugs
