[keep smilin]

This is my first posting here but I must say I have been reading much information on my condition, RSD from this forum. You have all been so helpful and I am very happy to able to talk with you.. I have had RSD now for 2+ years beginning in my right knee, post injury and surgery. Sadly, I was diagnosied on my birthday...... and I am now having pain on my left side, my knee, foot and hip. As we all know..what a 4 headed animal RSD is, never the same for any of us. So complicated and painful!! I have had 4 nerve blocks, tried many meds which I could not tolerate and finally I had a SCS placed in my back last September. Unfortaunately, the SCS made it worse. I am now awaiting a consultation at Drexel next spring. My question is does anyone ever reach a zero pain level??? I know in my case, I have never been without the deep, burning, hot glass pain..24/7 for the entire 2 + yr.since I was diagnosised. I walk with the aid of a cane, decorative one may I add but necessary as walking is so painful and days are very long... I so appreciate any insight anyone can share with me and again.. It's my pleasure to connect with you all!!! Thanks for your support... We are in this together...

[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

[bobber]

Welcome to the borard,,,everyone here have their experiences as well as helpfull hints,,but as you know what works for one ,,wont for another,,remember what God say"s "All things are possible with God" and "Everytthing is possible for those who believe",,God will heal you and I believe he will lower your pains,,My hope is a healing and not just a remission for everyone on this board . I pray often ,and activity is a must,although painfull,,i aqua jog,,i have good and bad days,,,But my hope is in Gods mercy in healing me as he see's us struggling in our faith,,Im always trying to desensitizing my afflicted limbs,,its painfull at the time but It does pay off, and we know how rsd affects our {vasamotors-circulation] and sudomotors-sweating]So movement is a must,,,,,,May the Lord lessen your pain as well as us all,,,my hope is in him and not the dr's,,,Good luck and pray,,pray,,pray,,your brother in Christ Jesus our Lord ,,,,,,,,,,bobber

[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.

[bassman]

Good to meet you, "Smiling"

I don't think that "total zero" is ever really possible, but with the right pain management and finding a good treatment combination, you may get your pain down to a more tolerable level on occasion. Sometimes, not always, people will find the RSD goes in cycles of high-and-low pain.

I personally think that my tolerance for pain has changed over the years as well. Minor bumps, cuts, scrapes, etc. that some people find hurtful will be almost like a tickle to me. I guess that, relative to the RSD pain, it is so minor it’s not even worth saying “ouch.”

Hope you get some relief soon.

Mike

[daniella]

You know my pain doctor was talking about what pain level becomes tolerable to people and it varies for everyone. I think a key is finding the right treatment for you which may be different from others on this board. With the proper treatment I think the rsd can get to a better place but of course there are a lot of trial and errors. I have had a couple less invasive procedures before I was going to get the scs that made me worse so why I have not done the scs. I am sorry that you had to face that. Are you on any meds or other treatments now as the spring is a long time away? Also I know apts have long wait lists but like when I went to Cleveland Clinic I got in months in advance by calling every day for a cancelation.
Bassman that is interesting about small things not causing you pain. See when I hit myself I feel so sensitive but obviously not like the rsd pain. I think for me I am so protective of my body and I mean the non rsd parts that when I do something different it feels like strain or more sore if that makes sense.
Feel better all and lets keep to hope.

[hopeful]

Hi Keep Smilin,
Welcome! Sorry to hear you are suffering. I am also pretty new to this site and the dx of RSD. I have learned a lot from others on this site. I have not had any nerve blocks yet but waiting to hear from my neurologist about having one.I also have tried many different meds and have a hard time tolerating high enough doses to help lessen the pain. I was dx'd in oct/08 (symptoms started much earlier) and sorry to say probably have varied between 6-9 pain scale for most of this time. The only time I did have relief (although not a 0) was after ketamine treatments. Are you seeing Dr. Schwartzman at Drexel. That is who I see. He is an expert in this field and can be very helpful.
Hoping for pain free (on at least low numbers on the pain scale!) days for all of us.
I'll keep praying
Hopeful

Originally Posted by keep smilin

This is my first posting here but I must say I have been reading much information on my condition, RSD from this forum. You have all been so helpful and I am very happy to able to talk with you.. I have had RSD now for 2+ years beginning in my right knee, post injury and surgery. Sadly, I was diagnosied on my birthday...... and I am now having pain on my left side, my knee, foot and hip. As we all know..what a 4 headed animal RSD is, never the same for any of us. So complicated and painful!! I have had 4 nerve blocks, tried many meds which I could not tolerate and finally I had a SCS placed in my back last September. Unfortaunately, the SCS made it worse. I am now awaiting a consultation at Drexel next spring. My question is does anyone ever reach a zero pain level??? I know in my case, I have never been without the deep, burning, hot glass pain..24/7 for the entire 2 + yr.since I was diagnosised. I walk with the aid of a cane, decorative one may I add but necessary as walking is so painful and days are very long... I so appreciate any insight anyone can share with me and again.. It's my pleasure to connect with you all!!! Thanks for your support... We are in this together...

[angelrsd]

welcome keep smilin.

i have had rsd for 11yrs and i have never been under a 7 since day one. and i have full body and internal now basicly from the beginning. i really hope that Drexel can i help .. welcome again to the group. sorry i havent been on much of late


carrie

[nancyinLA]

welcome to NT! these r awesome people!! i have a W.C. injury 4/08 - broke left wrist & came out w/RSD! now my whole arm is affected & has gone 2 my left foot, up 2 knee. never pain free!! take 1800mg neurontin & celebrex (sometimes)..... drop in barom. press. is a killer! also have epilepsy. takes meds 4 that! haven't had injections, etc..... i know the result is temporary - i don't think it's worth the pain. i see a psychol., neurologist, PM dr, & orthoped. AGAIN, welcome!

[loretta]

Originally Posted by keep smilin

This is my first posting here but I must say I have been reading much information on my condition, RSD from this forum. You have all been so helpful and I am very happy to able to talk with you.. I have had RSD now for 2+ years beginning in my right knee, post injury and surgery. Sadly, I was diagnosied on my birthday...... and I am now having pain on my left side, my knee, foot and hip. As we all know..what a 4 headed animal RSD is, never the same for any of us. So complicated and painful!! I have had 4 nerve blocks, tried many meds which I could not tolerate and finally I had a SCS placed in my back last September. Unfortaunately, the SCS made it worse. I am now awaiting a consultation at Drexel next spring. My question is does anyone ever reach a zero pain level??? I know in my case, I have never been without the deep, burning, hot glass pain..24/7 for the entire 2 + yr.since I was diagnosised. I walk with the aid of a cane, decorative one may I add but necessary as walking is so painful and days are very long... I so appreciate any insight anyone can share with me and again.. It's my pleasure to connect with you all!!! Thanks for your support... We are in this together...

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