Originally Posted by loretta

Hi Keep Smilin,
Welcome, we are glad to have you join our family. Please know this is a safe caring group of friends, like yourself, having good days and very difficult daysl Regardless, we desire to help each other.
I'm sorry your SCS didn't work. Happy for you going to Drexel next spring. Sounds like you have done a ton of research.
Sounds like you are in considerable pain I personally don't believe we can reach a long last zero pain level, unless we are in remission. My RSD came following benign breast tumor surgery (2) Got frozen shoulder and started pt, but wasn't diagnosed for 4 years. After 100 pt , I did go into remission for at least a year. No pain= back to playing tennis, water skiing, snow skiing etc. It was torture-the physical therapy and 100 massage theray The pt group told me not to be surprised if I got frozen shoulder on the other side. Well we moved from Oregon to Arizona and after a few months, it did cross over-frozen shoulder in right side. More pt and massage therapy and pain. Didn't take as long this time a2nd remission. Back tennis, skiing etc. The 2nd remission lasted at least another year, (I had not been diagnosed with RSD- just frozen shoulder, shooting pains thru my back. While waterskiing, I felt a painful pull in my left hand (original surgery side) It swelled up terribly and Dr. said I had Rheumatoid Arthritis. I told him how could that be when my blood tests were negative for RA. So, flew back to Oregon to sports injury orthopedic hand specialist. He diagnosed me with RSD in less than a minute. sent me over to nuclear med test and it was confirmed. He started me on pt there in Oregon and ordered a tens unit. I came back to AZ and saw a neurologist-tests confirmed RSD saw hand orthopedic Dr who confirmed and went into therapy and hand densitsitization. I also did the hand desensitization at home. I took 6 plastic bowls and put cotton balls in one, sand in another, coffee grounds, rice, just different textures etc. Over a long period of time, I was able to use my hand. It is permanently partially paralyzed, but I can cut my food, button clothes etc. I'm very grateful for the use that I have. RSD used to be called shoulder -hand syndrome It then moved to other hand, and I got right back into therapy and have full use of my right hand. I have generalized or full body RSD now and a couple years ago, my toes started curling up off the floor, Dr. got me right into water therapy and I did the exercises every day. Toes are now touching the floor and I'm still mobile!!!Yeah It's been 14 years and I have a wonderful Dr. the last 5 years.
One thing off can put us into terrible flare and downward spiral. I wasn't sleeping-Ambien CR wasn't working. I wouldn't get to sleep till 5-6 in the A.M.
This really sent me in downward spiral. My Dr. was doing a 200 person study for a pharmaceutical company. The study took a strong drug and tried a low dose amount to see it's affect on fibromyalgia patients. The results are outstanding and will soon be published. Besides positive effect on fibro. it had an outstanding affect for restorative sleep. I went on it that same day. I stayed in bed 3 days, but I still sleep 9 hours straight. Because of the restorative sleep, my Dr. cut my anxiety med-lorazepam in half. He left it up to me the pain med vicodin. I cut it in half too. From 6 pills a day, I'm even down to two some days. I'm now getting out, driving, grocerys store errands. I still wait to drive a period of hours, because vicodin & lorazepam have an affect on us for driving. Can get a ticket if drive too soon after taking certain meds.
There is a good website rsdrx.com that under puzzles has a wealth of good information. Dr. Hooshmand is retired but still has website up
Hope the best for you and better pain control. What exercises are you able to do? Welcome again, and hope you find peace. loretta soft hugs

Originally Posted by loretta

Hi Keep Smilin,
Welcome, we are glad to have you join our family. Please know this is a safe caring group of friends, like yourself, having good days and very difficult daysl Regardless, we desire to help each other.
I'm sorry your SCS didn't work. Happy for you going to Drexel next spring. Sounds like you have done a ton of research.
Sounds like you are in considerable pain I personally don't believe we can reach a long last zero pain level, unless we are in remission. My RSD came following benign breast tumor surgery (2) Got frozen shoulder and started pt, but wasn't diagnosed for 4 years. After 100 pt , I did go into remission for at least a year. No pain= back to playing tennis, water skiing, snow skiing etc. It was torture-the physical therapy and 100 massage theray The pt group told me not to be surprised if I got frozen shoulder on the other side. Well we moved from Oregon to Arizona and after a few months, it did cross over-frozen shoulder in right side. More pt and massage therapy and pain. Didn't take as long this time a2nd remission. Back tennis, skiing etc. The 2nd remission lasted at least another year, (I had not been diagnosed with RSD- just frozen shoulder, shooting pains thru my back. While waterskiing, I felt a painful pull in my left hand (original surgery side) It swelled up terribly and Dr. said I had Rheumatoid Arthritis. I told him how could that be when my blood tests were negative for RA. So, flew back to Oregon to sports injury orthopedic hand specialist. He diagnosed me with RSD in less than a minute. sent me over to nuclear med test and it was confirmed. He started me on pt there in Oregon and ordered a tens unit. I came back to AZ and saw a neurologist-tests confirmed RSD saw hand orthopedic Dr who confirmed and went into therapy and hand densitsitization. I also did the hand desensitization at home. I took 6 plastic bowls and put cotton balls in one, sand in another, coffee grounds, rice, just different textures etc. Over a long period of time, I was able to use my hand. It is permanently partially paralyzed, but I can cut my food, button clothes etc. I'm very grateful for the use that I have. RSD used to be called shoulder -hand syndrome It then moved to other hand, and I got right back into therapy and have full use of my right hand. I have generalized or full body RSD now and a couple years ago, my toes started curling up off the floor, Dr. got me right into water therapy and I did the exercises every day. Toes are now touching the floor and I'm still mobile!!!Yeah It's been 14 years and I have a wonderful Dr. the last 5 years.
One thing off can put us into terrible flare and downward spiral. I wasn't sleeping-Ambien CR wasn't working. I wouldn't get to sleep till 5-6 in the A.M.
This really sent me in downward spiral. My Dr. was doing a 200 person study for a pharmaceutical company. The study took a strong drug and tried a low dose amount to see it's affect on fibromyalgia patients. The results are outstanding and will soon be published. Besides positive effect on fibro. it had an outstanding affect for restorative sleep. I went on it that same day. I stayed in bed 3 days, but I still sleep 9 hours straight. Because of the restorative sleep, my Dr. cut my anxiety med-lorazepam in half. He left it up to me the pain med vicodin. I cut it in half too. From 6 pills a day, I'm even down to two some days. I'm now getting out, driving, grocerys store errands. I still wait to drive a period of hours, because vicodin & lorazepam have an affect on us for driving. Can get a ticket if drive too soon after taking certain meds.
There is a good website rsdrx.com that under puzzles has a wealth of good information. Dr. Hooshmand is retired but still has website up
Hope the best for you and better pain control. What exercises are you able to do? Welcome again, and hope you find peace. loretta soft hugs

Originally Posted by hope4thebest

Hi Keep Smiling !
Glad to meet you on the boards..I wish it were under other circumstances..but like you, I am very happy to have found this board, with all its information, support, and truly great people!!

I, too was diagnosed (officially) on my birthday!!, August 1st, 2008, post injury and surgery of left foot/ankle! I had asked the doc a couple of months before if he suspected RSD, as I did, and he said "no." But on my Birthday, August 1, last year he finally made the diagnosis. I think I had it post surgery on Feb. 21, 2008, and even possibly post injury in 2006.

Nevertheless, i've had 6 lumbar blocks and take Neurontin which I barely tolerate as I work a detailed job full time. I couldn't tolerate Cymbalta and declined methadone. I get 5 injections into the nerves of my foot monthly, and I, too walk with a cane!
To answer your question, do I ever feel Zero pain? Oh, how I wish I did!! The burning is always there to varying degress in my rsd foot/leg and also in my right foot/leg and sometimes on my face and in my mouth!

Walking is very painful as I can only walk a few yards at a time..with terrible pain..it is there even without walking..There have been a handful of fleeting moments where my pain was almost indiscernable..maybe three or four times..
Any movement flares it up, even a few revolutions on an excercise bike or aqua therapy pool..doc thinks I also have entrapped nerves.

Everyone has difference circumstances and issues and I am hoping there are some who have had zero pain from time to time !!
Here's hoping that for all of us!!
Welcome to the boards!!!!
Hope4thebest

Originally Posted by hope4thebest

Hi Keep Smilin'
Hey, maybe we'll get Remission for Christmas, to make up for the birthday diagnoses!
I am wondring how you cope with the pain without meds. Is there anything you take that might be natural, or any strategy you have to make it though the day..and the night?
What I have found so helpful, is meditation and relaxation techniques, to ease into the pain rather than avert it..this has helped me through a lot of rough times.
Currently I am taking an 8 week series of classes called Mindbully Based Stress Reduction' originally developed by Jon Kabat-Zin out of the University of Massachesetts Hospital...it is primarily for chronic pain sufferers and for anxiety as well. It focuses on meditation, relaxation techniques to ease pain, simple yoga, information on the biology of mind/pain connection..it has been extremely helpful....also meeting people with similar circumstances has eased that feeling of isolation and loneliness, of not being understood.
Wishing you a restful Sunday!
Hope4thebest

Originally Posted by Dew58

I am Linda, my friends call me Dew..nice to meet you. Sorry it under the RSD umbrella. I too had RSD start in my right knee, injury in 3/07 that started burning immediately, then surgery 5/07..injury in 12/07 ,same knee,and surgery in 1/08..WC injuries. It took over 15 months for dx to be made..1 1/2 yrs of PT..My PM doc told me that too much time elapsed before he got to me for blocks, SCS, to do any good! I also walk with a cane, and have been called House as I use the cane on my right side,LOL!
I am on SSDI now, disabled because of this culprit. It has spread to both legs, spine, both arms and hands. Some days I wish I had a wheelchair..but, then again..I am cautious to start using one. I have a med cocktail that consists of 18 pills per day. Rain..or any change in barometric pressure brings on pain flares.I see a psychologist every 2 weeks as I am also dx with Major Depression,Anxiety/Panic Disorder, Insomnia, Fibromyalgia, etc,all by=products of the RSD.

I have never had a pain level of 0..I WISH! The burn and/or deep ache is always present; however, the med cocktail that I take everyday tones the pain down.
Pleased to meet you.