Sorry for the really late reply, but yes, some of us experience all of those symptoms.

To every one
 

Hello my name is flippnout. I have been on these boards for several years I think.....well we know how that goes right.

I have RSD and TOS, man I feel like this is AA nope never had a drinking problem had a friend who did, so I went with him well drove him there. So I have these conditions and I refuse to get down I have been there and feel the negative thoughts and lost feelings make it worse sure I have the pain yet I just want half the pain thank you LOL. I do have my time but I have got to learne to beat it down, we being A types should know how to control this thing, that is why we are A types right.

So I have this WC thing going and SSDI going wich I'm sure others do to, my doc is on my side so thank you docs! I have got to come to terms of finding a new life what to do now! with my life I can no longer work but I can do something like to volunteer so I have to think, I anc start doing ART again paintings wich would be good therapy and I must start to walk more, darn lyrica is making me gain wieght...

I live in the center of the USA and I like it here I wish I knew others here with this,but not many I guess I am treated at a teaching hospital I'm sure one day I will meet some one for talking. Till then I will be here if you dont mind...

11 years and counting
 

I was in a serious car crash in Jan. 1996 with significant damage to my left arm +++.

I haven't had any implants, but everything else that has been tried hasn't worked.

It is hard to describe to others the stunning nature of this pain.

got rsd july 5, 1996 from my third hip replacement surgery.
i was 44 years old.
DX by a rehab specialist April 1997, 9 month later.
joan

when did you get your initial rsd/crps dx
 

This link goes to the thread -

"when did you get your initial rsd/crps dx" http://neurotalk.psychcentral.com/sh...ad.php?t=26282

It ties in with the introductions thread and will make it easy to find.

Brief History for my wife: She was involved in a farm accident in December of 1995. As a result of this accident, she shattered her entire left elbow joint. From this original injury, came the on slaught of viscious neuropathic and orthopedic pain. Marilyn's left upper quadrant was the primary RSD focus. Over the years, the RSD pain has migrated--the migration was not rapid, but after more injuries, a couple of back surgeries, and most recently a tendon repair operation, she is a mess.

So, it's 12 years down the road and her pain is getting worse and more intense as the months pass. She is wearing down like an old alarm clock spring. I can see the fight in her spirit is diminishing. Marilyn takes an anti-epileptic for pain control. That's it. She has tried various other approaches, non which provided satisfactory.

A surgical sympathectomy, directly recommended by Dr. Schwartzman at the time, was done with moderate success. She was relieved of much pain for about 18-24 months. The pain came back as we knew it would. Marilyn said the relief for that time frame was worth it. Yes, the nerves that were severed did grow back, but the pain didn't appear to be any worse than prior to the sympathectomy. BTW--we researched the heck out of the procedure before deciding it was viable for Marilyn.

Marilyn also gets a Bier Block about every 8 or 9 months. Sometimes she can last a year after having the Bier Block. But Marilyn always knew that somewhere down the line, unless a cure was found, and that isn't in the cards yet, she would have to strongly considered an scs or pump situation for herself.

She is not a candidate for any ketamine infusion therapies. None, not outpatient, not inpatient, not Schwartzman's Germany bound procedure, not Harbut's protocol. Her heart reacts very badly top ketamine in any form. So that avenue of hope for Marilyn is shut out--much to my chagrin and hers as well.

I don't want to go on and on. As part of our research we would very much appreciate input for all those who have experience with any type of scs unit. We would also ask those who respond to let us know which manufacturer's unit was installed.

Thank you all for your kind responses so far.

johnthepainter (I am a house painter by trade)

All the way from Brazil, seeking advice
 

Hi everyone,

My wife had a car crash and had to undergo minor surgery on her left hand, due to a broken bone.

That was 22 days ago.

After having heard from 4 different doctors that the swelling and the pain would go away, a fifth doctor diagnosed her with CRPS.

Being diagnosed is both scary and relieving. Relieving because we read a lot about it in the last 2 days and know what are the next steps. Scary because the outcome is unknown.

One first question would be: what is an early or late diagnosis? She will start OT 23 days after the accident.

What we are most afraid of are the crippling effects of CRPS. Her fingers are already stiff.

Please, if you have been through that, give us a light. Thank you.

By the way, what an year... last june we both were diagnosed with HADD... but we are even proud of being so hyperactive...

Life with rsd/cprs
 

Hi. My name is Julie and I am emailing from upstate NY. Having been dealing with a workman's comp inj to elbow & shoulder that never healed and I have recently been diagonsed with rsd. Looking forward to talking to people who understand what I am going thru.

Take care

Julie

My story.. Helpppp
 

Well im a high school student and i developed RSD last year. I had a a ski accident and i had gotten a fracture . I have went through numerous doctors and have gotten no results . About a month later i was diagnosed with RSD. Nothing helps it at all even vicodin etc . I honestly feel as if no one but myself has any clue how painful and hard this is to deal with. People in school always talk about it but they have no idea what they are talking about. This has effected my life in a major way i cant play the sports that i love anymore and its tough. Just as i feel like it might get better it dosent and i think im starting to have a problem with my knee HELP ME Any advice?

To Accidentwalking here-high school student.
My name is loretta,and I'm so sorry you have RSD. It's important that you understand the many symptons of RSD. The more you know and understand what is happening to you will lessen your fear and get control of your health.
Many Drs. really don't have a lot of knowledge about RSD and how to treat it.
People are different in their reaction to medications and treatment. You are in the best place to get procedures that can put you in remission. If you get treatment in the first 6 months you have a good change to get blocks that stop the cycle of pain signals going to your brain. I did not get an accurate diagnosis for maybe 3 years......then the pain signals become independent pain signals. Do a lot of research before accepting a form of treatment.
Ask you Dr. how many rsd patients he has treated. If you decide to get a block, it's done by an anethesiologist. Ask how many blocks he/she has done...I'm so sorry you have this monster of a disorder. Your right, it's difficult for anyone to really understand, even family. That's why this forum'is so wonderful. There are so many wonderful people, young ones in school and college. The people here have a tremendous amount of collective knowledge..Depression goes along with rsd, because the disorder affects the limbic part of your brain that controls emotions. It affects your blood pressure both high and low, your circulation, anti-depressant meds are effective for nerve pain. I am on two different ones. Also anti-seizure meds are effect on nerve pain. Neurotin has been used for years. I was on it for a long time, but I've switched to Lyrica and it is more effective. Besides Vicodin, I also take an anti-anxiety med. Also a sleeping pill occassionally. Two different blood pressure meds. I didn't have blood pressure issues before rsd. My daughter and I snow skied, water skied, played tennis (really we were fanatics) worked out together at a club. It is such a loss to loose being able to do all that. It is life changing. I went thru a serious grieving process. I have full body rsd now for 12 years. Mine started the day after surgery-I had frozen shoulder. I went thru about 100 physical treatments to get the range of motion back. A few months later it moved to the other shoulder- more therapy. Then my left hand was injured-a nerve pull while water skiing. more therapy so painful. use of my fingers is limited. it's like a frozen claw. then moved to other hand then moved down to both feel and lets. About 6% get full body. Where do you have rsd. what treatment plan do you have? Another site that answers many questions is rsdrx.com The puzzle part is very good. Having the right Dr. is so very important. Mine is just wonderful.He is a neurologist, phmacologist, and a phyciatrist. Please let
us know how you are doing. You can share your true feelings, it is such an adjustment in life and we can't do it by ourselves.Everyone here really cares.
Sincerely, loretta jewell from arizone.

New to site
 

Hi all,
I have had RSD for 10 years. Had minor knee surgery and BAM - RSD in the left knee, then leg, then onto the right knee and leg. I was out of work for 3 years...cou;ldnt walk, drive or anything else. Had to undergo PT to prepare for surgeries to rebuild both legs as everything had atrophied from the RSD. in 00 went back to work and have had flare ups since, usually managed by meds but when it gets real bad i get the blocks. had a block on 12/24 (merry christmas to me :wink:) and will be having another on 1/22....thought I'd see what folks on line had to say and what they thought and felt about RSD....

For me, I make the most of what I have everyday and go to PT in the pool 2-3 times a week after work to keep my legs moving....taking cymbalta for the first time for the RSD....just increased from 30 to 60 and the sweats are slowly starting to subside. Have bumps on tongue from the dry mouth but hope they will go away soom....tried Lyrica - side effects were too much...used to take dylantin, baclofen and flexerill but had to change meds because my body got too used to them.
So thats my story - I am always interested in hearing others and would be happy to answer any questions folks new to this disorder may have....I have always considered myslef pretty lucky as my neurologist also has RSD so he can always relate to what I have to say and how I feel.
In good health to all,
Lisa

Hi JennyK38,

Hi Jennifer, So Sorry to hear about your injury at work and having RSD now. I had breast surgery, both tumors benign, but also got frozen shoulder following the surgery. My arm swelled up, followed by the frozen shoulder. It probably took 100 physical therapy treatments plus massage therapy to get full range of motion. Ortho Dr. wanted to operate, but said no. Shortly later, it moved to the oppposite shoulder and froze. Not so many treatments, got an earlier start. About 5 years from the surgery, was water skiing and pulled nerve in the left hand. Was misdiagnosed with arthritis and bad pain. Finally diagnosed with RSD and back to therapy. Left hand is permanent claw, Then right hand rsd then both feet and legs. full body plus trigeminal nerve pain and half my face. I have finally found a wonderful Dr. Have switched from neurotin (3200 mg to Lyrica 400 mg. The Lyrica is much better for me and lessens the nerve pain. Am on Ambien Cr for sleep. The Lorazepam helps with anxiety and two different blood pressure meds and two different anti-depressants that help with nerve pain. I used to have the electrical jolts bad and spasms. High blood pressure and then sudden drops. This disorder really affects so much of your life, memory, depression, sleep deprivation, energy level,the pain is unbearable . I had a tens unit too Jenny, Swimming is one of the best things that help me. I hate the weight gain from the meds, and the
exhausation from the meds and depression. I'm afraid to try to scale down, because I had a bad drop in pressure and passed out for over an hour. B/P
was 60/40 4 days in icu. I was able to drop down two vicodin a day because the Lyrica was more effective for me than neurotin. This forum and helped me too with the isolation and missing so much my old active life. It is a real adjustment in life and missing all the things we used to do. I try and be grateful for what things I have now, a husband that does so much-shopping, drug store, housework. etc. Our daughter is married-7 years now and just moved to Chicago. Life is full of change isn't it. I'm 59 and guess this has been with me for maybe 14 years. I have a good friend here in AZ with full body RSD from car accident. Jennifer, are you on SSDI, I read somewhere, it's easier to get now. If I every try, Ii'll use an attorney. Jennifer, hand in there, there is a lot of understanding and knowledge on this forum. Lots of encouragement, I'm trying to exercise more and loose weight. It's really hard emotionally to gain so much weight and not really have the energy to work out. I'm starting out slow and adding a minute or so a day.Please know we are all here for you. Sincerely, loretta jewell

Hi all My name is Jo i was diagnosed with rsd in may of 2007. I started with a stress fracture that healed and the rsd set in. I had a breakdown with the diagnosis of this, but am much better. I am on cymbalta, and kepra for the nerve pain. I am without pain meds trying to this without .. In the process of finding a new pm one that doesnt have assistants in every corner lol. I had one lumbar block in august. I have five children ages 20,19,13,11, 6.. So far its been a long haul but we are managing much better. Hope to meet you all.

JoJo

My name is Stephanie. I was recently diagnosed with RDS, but I am in denial.
I was in a car accident in November. I was going straight through an interesection and the other driver turned left in front of me. He was unlicensed, uninsured and undocumented. Unfortunately, I only had a $15k uninsured motorist policy. My left arm was injured somehow in the accident. I dont remember what exactly happened to my arm, but it turns out that I only sustained soft tissue damage. My left hand has become increasingly more painful. It goes from extreme hot to extreme cold. On bad days, it turns a lovely shade of purple. It is constantly swollen and hurts all the time. I am seeing a neurologist and have been throught physical therapy. I am currently on Gabapentin, Naprosyn and Percocet. I keep thinking it is going to clear up on its own. I keep thinking i will wake up one day and it will be better. I struggle with accepting that RSD is the real problem. The neuro has ordered an MRI to find out if there is damage in my neck/spine. My neuro does not seem to be in any kind of hurry to help with the pain. In fact, he isnt even the one who prescribed the Percocet. I had to get that from my PCP. I guess I am just looking for some answers and explanations. Hopefully, I will find both here. :)

Thanks for your story
 

I have to say thanks for your story. I was trying to find people whom has had the burning pain travel through other parts of the body. I have a lawsuit going because of an accident that caused my rsd. It started in my feet and achilles tendon's. 5-6 months later I also had severe burning pain in the back of my calf, thigh and my butt burns as well. I can't sit for very long, stand or walk. I actually lay in bed all day. I have to find a way to prove that rsd can spread. Just sitting here typing causes to much pain.

Thanks again
Heather

Hi There..
 

Here is an article that you might be interested in...

http://www.rsdhope.org/ShowPage.asp?PAGE_ID=79

Sorry to hear that you have RSD also. My thoughts and prayers are with you!

:hug:
Heather

wow
 

I'm sure you've heard this before...but I have to tell you I am impressed by your tenacity. I feel for you and I will keep you in my prayers. I just found out my son (21) has rsd. It is very hard watching him change. You give me hope and I wish you the best. How is your mom?

I feel for you. I am ashamed to admit that at first I worried that my son liked the meds a little too much. I DID NOT understand. I apologize to all of you out there who have your loved ones questioning your issues. My son is just 21 and I think I was in denial "Not my BABY!!!"
Well I hope the medical profession catches up soon, because this is so real, so important, so life changing and frankly...I'm mad.
Please excuse me for venting a little...this darned thing (rsd) makes you feel alone. Does any one know how to find people who suffer with this in their area? I live in Sterling CO, (NE Colorado)

My Story
 

Hi. My name is Melissa and I was diagnosed with what my ortho called "mild" RSD about 7 months ago. I fell and had a tiny fracture on my fibula at the spot where the nerve wraps around the bone. I was put in a walking boot and told to do "light duty" at work. About a week later I went to the ER because I couldn't feel my foot and my aunt (an RN) couldn't find a pulse. The attending mentioned a possibility that I could have RSD and that I should ask my ortho to look into the possibility. My ortho blew me off saying it was way too early to consider RSD. A month later I was still having burning pain and now I couldn't feel my two outer toes at all. He then conceded to treating the RSD with PT, but no meds. To this day the only serious pain med I have taken was the 2 week supply of Vicodin I got at the ER when I broke my leg! I have my good days when my only issues are the numb toes and the hairy legs (when I can actually handle the burn of shaving my leg, I cut myself too much and don't realize it... So I don't bother most of the time), and then I have my bad days when I feel like my leg is being dipped in molten lava and then rolled in thorns. I guess I was lucky that it was diagnosed so quickly, but I didn't get any real information on it. No one told me it could spread. No one told me it could worsen over time. The more I read the more terrified I become and that horrible sense of hopelessness creeps over me. Because of my uninformed state, I signed a settlement with the insurance company that released them from any further liability. I was off work for 3 months and I was so desparate to pay bills, and my PT and ortho both told me I was fine. Now I'm not sure what I'll do. I can't afford to see a doctor and even if I got insurance, it wouldn't cover a "pre-existing condition".

Hi I'm Kathy
 

for those of you who do not know me I have had rsd since Feb, 1995. I was lucky they caught it early and it has not spread alot. My story (be warned it's graphic) is on my website click the link under my siggy. I am sorry so many suffered from rsd and hope one day like one of my docs used to say, "they'll find the little buggerthat causes rsd in the brain and zap it! And pain will be no more." Wouldn't that be great.

I have had RSD over 11 years
 

Hi everyone,
I have had RSD over 11 years. It started in my right hand then crossed over to my left hand then down to the right foot then to left foot. Today the doctors say RSD/CRPS wholebody centerlized. I cannot take pain medication and I suffer with low blood pressure and heart problem so almost every medication is out for me. I get Cervical and Lumbar Epidurals and Botox (Myoblock) injections every 11 weeks. This treatment works for me. Without it I have four limb sever flares and I get Kidney involvement, and I experience vomiting and bowel shutdown. Sometimes the pain gets so bad I have pain seizures. Doctors say my pain tolorance is higher then my brains and the brain has a safety switch that goes into siezure when it is toooooo much. So I guess you might say that I am very strong in a sense. Anyway I am new to this forum. I was here in 9/07 but haven't been back until now. I have upcomming heart proceedure in April 2008. Was wondering if anyone has had a heart ablation for WPW. Surgery is very scary with RSD and on the heart I am a bit scared. My service dog is helping me deal with the stress I think he feels it. He is a yellow lab named Hoss and he is also a medical alert dog. Anyway there is my introduction. It is late I better go. Take care all.
Lindecker01

Heather ,31, here RSD sufferer 2 1/2 yrs
 

Hi everybody, hope every one is doing well. I had a really FREAK accident and that's why I have RSD. I was having an MRI done. This was a sit down MRI. They have new machines these days. It's confusing but the technician wasn't paying attention to where my feet were, even though he asked me to lift them, and the machine (that was moving me forward) went over the back of my feet and up my achilles tendon. Both feet. My feet got jammed under. Something that will haunt me forever and ever. I got the same RSD diagnoses from the 4 doctor's I've been to. After 2 failed nerve blocks and loads of medication I had a spinal cord stimulator implanted. I had the battery implanted in my butt. It took me 5 miserable weeks to recover from the first surgery. Then a few months later I had it moved up my spine. This was done because the pain had gone up the back of my leg and butt. I felt like entire leg, foot and butt burned, like my skin was on fire. Then a few months after that I had the stimulator taken out since it helped my foot pain but my leg pain continued. My 4th doc thought the stimulator was causing the pain in my leg. Well, he was wrong. I know the newer pain is RSD, it just spread. I realized that after the burning pain in my right foot & achilles tencon came back. It was like a puzzle had been completed. So between the months of Feb - Oct 2006 I had 3 major back surgeries. I'm extremely bitter :). I went back to my doctor after the pain came back and he said there's nothing to try you'd done everything there is. I already knew that but it's hard to hear.

Talking about my frustration keeps me in check.

Thanks for listening...........Heather

Early detection and RSD
 

I am very fortunate to have had my RSD detected early; one month post-injury. I cannot imagine having gone another day without any validation of the severe pain I was in. I felt like my doctors messed up by not finding it sooner so I greatly sympathize with all of you struggling through each day.

I also think it is important to tell some cases of early dx so some who receive early diagnosis aren't scared away from these sites. In this manner, we can call benefit by knowing what worked quickly and spread the word to more friends and doctors. When I first received the diagnosis; I stopped reading a lot of these websites as I got really scared. I still am but know that with my early detection I am in a much different place and thank god for my miracle.

I dislocated a 2nd or middle toe; a little traumatic of an er experience; needle all the way through foot; dr tried to unsuccessfully reset the toe a couple of times w/o bracing and b/4 novacaine set in.... However, heard it eventually pop in and he said I would be driving the next day; sent me home w/o crutches. Well I couldn't walk and the orthos (I saw a few) kept telling me it's a painful injury and come back in Mid March (My accident was on 2/5) Thank goodness for a podiatrist who referred me to a neuro and gave me a script for an MRI. She told me I had classic RSD. My foot had blown up. I couldn't flex or extend it. It was locked in a 90 degree angle. I could not feel or move my toes. It was red and blue if I extended it down. I could only use crutches for 45 seconds. My only experience was a knifing nerve pain that occurred all day and night. I was a wreck. I was taking sleeping pills, pain killers...

Most people were like come on, a dislocated toe, suck it up and get better... I have a friend who said, go to more doctors till someone gets it right b/c this is not right. People kept saying how many drs are you going to go to and my friend said who cares, go to a 100 if you have too. Think of your children, you would do the same for them, do it for yourself.

So I was dx'd on a sat. I went for an MRI on Monday that revealed a neuroma and saw a neurologist that same day who confirmed the RSD. Then on Tuesday I spoke with my podiatrist about the MRI, who said we are not going to worry about the neuroma b/c the real issue is the RSD and that may subside if we treat that first. (Another dr. may have performed surgery on the neuroma; casted me and I would have been another six weeks out b/4 getting a true dx). So I begged and got into a pain managment center (called and called and kept calling till I wore them out to fit me in) on Weds. and insisted on an appt and had an injn to the spine. Get knocked out. If I didn't I would not have been able to lie on my stomach due to the pain in my foot. I still sleep on my back.

My husband thought we should just do a consultation first as he was nervous if the dx was correct and about a spinal injn) I felt confident with the doctors b/c I called every friend and made them call everyone they knew including drs to get the best center for this condition in my area. Fortunately, for me my RSD is sympathetically mediated, meaning after having the block my foot immediately responded and I could move it, flex, extend, wiggle toes slightly, I could feel it. I cried I was so happy after. Then I just went to the closest PT place. Didn't have time to pre-schedule. I begged and said I hadn't walked in 4 wks (the truth) and the dr said PT was critical especially right after the block. I have a wonderful compassionate PT and am now 1 week later walking with a crutch. My foot is still very sensitive, larger, went from a 6 1/2 shoe to an 8 on my left foot. Sneaker feels very heavy. But with a padded shoe I can now one week later stand ony my foot. It is amazing. I am having a block again tomorrow (one week later) and hope with PT to have this in remission. The injection has no steroids or corizone. I don't have the name in front me but it begins with a b.
My doctor truly believes that I will be in remission after this next shot. Of course I will have to be careful. My foot is still tender but it has come an amazing distance. When I say my PT 2 days later; she was amazed at the rapid healing. My foot is getting definition; the coloration is essentially normal; each day I could move another toe. I can small shocks in the foot especially with weight or trying to walk normally but I am optimistic that I can "beat" this enough to live a careful painfree life. But education to all is key. For that reason, I think my story is important, but it does not take away from all the pain that the rest of you have on a daily basis. So I hope that I have not offended anyone and I am not underestimating the power that this condition can harm one.

Clearly knowledge and transmission of these cases is power. I will post a letter that I intend to send to doctors in my area (including of course the ones that I saw). If anyone likes it, feel free to copy it and send it along. If it educates one more doctor maybe one more person will be diagnosed early and have a better chance of a quick recovery and entry into a life of remission.

Good luck to all and may this message empower someone who is pondering whether or not this condition is present or whether they should continue with local injections as opposed to the spine. Ask around for the best doctors; ask the doctors who they like best and then call those doctors to see who they go to or refer patients to in pain managment and anthesiologists.

Lisa

I suppose one of these days I should do a post here.

But I am still in the bitter/denial/ticked off mode about this RSD/CRPS stuff.

I was dx'd by foot surgeon last December. I absolutely hate it.

new here
 

I have had RSD now for about 7 years. It took 4 years to be diagnosed and the only reason I think I was is because my FP was so aggravated with me he sent me to a pain DR. My Family and friends try but don't really understand the amount of pain especially when I have a "flare up" as I like to call them when the pain is so unbearable I can not even be outside with a light breeze. i have never heard another DR or Nurse or person for that fact that I met that has ever even heard of RSD and its very frustrating.

May God bless you MiePie.
You are so right. Without Gods love we are lost ! May you find peace from your pain and loving support and friends to lighten the way~~~ Im here if you ever need to talk

:winky::grouphug:

Hello Everyone,

I'm new here but not new to RSD. I took a minor fall inside my home three years ago that resulted in RSD in my left knee. Unfortunately nobody recognized it at the time and rather than treating the RSD they replaced the knee with an artificial joint. That was BRUTAL!

Have spent the last 2 1/2 years searching for and trying various treatments and went thru 6/7 doctors in that same timespan. I have a spinal cord stimulator that gives me some baseline relief but nowhere near enough to have a decent quality of life. A normal day to me is a 7-8 with pain ranging into the 9/10 levels whenever the barometric pressure drops.

Am still looking for a treatment that will get me down to a 5 - which is where I figure I'd be able to have a reasonable quality of life.

Hi,
A little about me!
I got RSD when I was 15. It started in my right foot/ankle and is now in my right wrist and hand, and I get flare ups in my left leg as well.
I really have nothing else to add to that. I don't know anyone else that has it so it is hard because no one gets it. I have two slamm children (3 and 1) So I have a verry hard time because I can't run after them and really be a great mom.

New to Forum
 

I just discovered this forum and am so excited about it, I was diagnosed with RSD in my left leg only 4 months ago. It progressed very quickly, I've already had several series of nerve blocks, then had a spinal infusion for two weeks. When things continued to get worse, they admitted me to the hospital and within a week I had a permenant spinal cord stimulator implanted. This has helped with a lot of the base burning pain, however it continues to progress, and I've recently started getting symptoms in my other leg. My doctors have told me they've done all they can for me, so I'm just stuck on a whole cocktail of medications, so I'm completely spaced out most of the time and have been starting to lose hope. Reading on the forum has brought a bit of that hope back, i don't feel quite as alienated and alone as I did... This all came on so quickly, I had no injury that triggered it, just woke up one day and it was there. I've had a pretty hard time adapting to "life with RSD." I was a full time student studying nursing and the proud mom of a very active 7 year old boy when this started. I've since had to drop out of school and my doctor's have told me I might want to start making alternate plans for my life because there is a good chance it may never go away, there's just no was to tell... It's great that there is a place like this, where we can share our stories and concerns. It's gotten so hard to relate to people in "real life" because it's so hard for them to understand where we are...

Hello and welcome to the forum!!!

I am so sorry to hear that you too are dealing with RSD, I have had RSD for 15 months now. I suffer from RSD in my left leg and right arm and developed it after an ankle sprain when I was 12 years old - I am now 13.
If you have any questions please don't hesitate to ask - I will try and help you if I can.

I too am on a lot of medications, these include, Lyrica, Baclofen, Paracetamol, Tramadol, Ibuprofen and something to try and help me sleep. I have also tried Amitriptyline (this caused my vision to go blurry and resulted in a spread of the RSD to my arm), Kenadrin, Pregablin, Morphine, Diazepam, Propranolol, and many more but they dont help me that much either.

I am currently waiting to start an intense PT program and I will start that on the 7th July. The program lasts 3 weeks (possibly longer) and I will have 2 hours of PT in a morning, then tutoring, then dinner and another 2 hours of PT after dinner.

I really hope you are having a "good" day and if you need anything I am here for you. I know how scary it is when you are first diagnosed with something that you don't understand that well

I'm looking forward to chatting to you more
Alison
xxx

Neicy new to rsd
 

I was diagnosed with rsd three months ago. I have had no contact with others who suffer from this disease. I would like to know more about this disease and what I should do from here. :p

thanks
 

Hi Alison, glad to meet you! Thanks for the response to my post, you are so young to be dealing with something as terrible as rsd, and I'm so sorry to hear you've had it for that long. I hope you have a great support team. I'm 26, with some wonderful family and friends trying to help me out and still having such a hard time dealing with it all, I can't begin to imagine how hard it must be for you; you're obviously a very strong young woman...

I'm also on the Lyrica, clonidine, amitriptyline, percocet, and valium; along with the fentanyl patch and the Catapres patch, so basically, I'm a walking (or riding) zombie, lol. They've got me in a wheelchair now...

Good luck with your PT program. That's one thing I've been a bit confused about, I was under the understanding that pt played a big role in the treatment of rsd; however, my team of doctors will not send me. I've been told that pushing too hard will only worsen the condition and perhaps cause further spread, so I'm supposed to try and move as much as possible at home, but not to push it. The last couple of weeks I've lost any flexibility in my left leg. My toes and foot are arched up as far as they can go and my leg is bent at the knee; I'm completely locked in to this position which makes sleep about impossible...

Anyhow, I guess just trying to get by day by day is all we can really do, I'm still holding out hope for a "miracle cure" but as i'm now only getting 2nd and 3rd opinions, that hope is fading fast... I hope you're having a "good day" as well and will count you in my prayers...

Take care my friend,
Sarah

Jules
 

I am new to the forum and share all of your agony. I had my left foot crushed 8 years ago and have had 6 surgeries to fusion my foot. They didn't catch the RSD in time and is now full blown. I take topomax, lexapro, klonapin,dilaudid. I have an intrathecal pump with dilaudid and bupravaine that I get an hourly dose. It is implanted in the left side of my abdomen. I walk with a cane from so much pain. I just had surgery in March because a screw broke and a part of my foot was broke again. Now because every invasion causes RSD to worsen the allodynia is really bad and so is the burning. I feel terrible for Sarah because the worse think for RSD is immobility. You are suppose to do some kind of exercise to help your extremity from contracture and burning. I wish everyone the best and god bless. Julie

Hello Jules!!!
I copied your post over to the New Member Introductions so that your post could be seen by more people and you could be welcome in Neurotalk fashion. Here is the link to the post I made in your honor.
http://neurotalk.psychcentral.com/showthread.php?p=305243#post305243

newly diagnosed with RSD
 

Hi
I am 27 yrs old and my RSD diagnosis was confirmed a few days ago after it showed up on a bone scan. It is in my left lateral knee. I have had 3 surgeries in that knee. My 3rd being in Jan this year and a major one. I was on bed rest for 8 weeks. I basically woke up about a month ago in pain so severe it made me cry. I am usually not a crier with pain unless it is really bad. I am on lyrica, oxycontin, a cream containing neruotin among other ingredients, and the lidoderm patch. I am suppose to get a nerve block soon. I am hoping once I get the block I can go off the meds and try to get pregnant. I am basically so sick of my knee and I really want to get pregnant. I guess my question is can RSD affect pregnancy and how long should you be off your meds before being able to try. I am kinda over the pain and just want to ignore it and move on with my life. I have been off work since Jan. My husband is a marine and we are getting ready to move from maryland to north carolina a week from today. The move so far has been hard because I cannot help with much and when I try I am in a lot of pain afterwards. I am hoping to find a good dr. there and to get the nerve block asap. Has anyone had the nerve block, if so how soon did you notice it helping?

I am glad I came across this site so I can find answers and do the best I can to get through this. I know I have good and bad days and ups and downs emotionally as well. I hope to learn a lot more. I think the more I know the better I can get through this. I know now it is not cureable but it can go in remission. I am hoping I can get mine to do that.


Erin

doctor in NC
 

I highly recommend the Carolina Pain Institute in Winston-Salem. I have been going there for the past 1 1/2 years. They are totally up to date on all the new treatments and research going on. If you google it you'll find their website. Not sure where in NC you're moving so hope this helps
Jeanne

Thanks I will check it out. I will be moving to topsail island near camp leguene. But I will definitely look into it. I am ok if I have to drive a little bit to go to a descent dr.

Frustrated
 

I don't know how else to describe how I feel other than frustrated. I have had shooting / buring pains off and on in my left wrist/hand for a few months now..I do a lot of computer work and thought that it was carpal tunnel. The last few weeks it has been worse so I was wearing a brace and trying to use it less then it began hurting so bad I couldn't function, I have a high pain tolerance and was just in tears it hurt so bad. So I scheduled a Dr. apt. a few hours before my apt my arm lower arm and hand got very cold and turned blue...this lasted for 4 hours then it warmed up for a few and went cold again...it does this constantly now. The Dr. tried somethings then sent me to ER to make sure it wasn't a bloodclot...6 hours and some tests later they said no clot probably RSD and sort of explained it to me...told me to follow up with my primary MD. I did that, they ran a bunch more tests bloodwork etc, still waiting for a few of the results but the Dr. said he really thinks this is what it is, that this is the only thing that accounts for everything...as I sit here my hand and wrist on fire I am in disbelieve...I didn't injure myself like I read about most...yet it swells and burns and freezes and just hurts like nuts. They currently just have me taking a lot of ibprofen and some vicoden for night when it's really bad...sometimes it works other times i scream and cry because i can't get it to stop no matter what i do...when it's really cold nothing can touch it without me yanking it away. Is there anyone else here who has this but never had an onset injury? I don't know if I accept this or get a 3rd opinion. I don't know if it will get worse, or better or spread or...I don't know.. sorry for ranting but I don't know what else to do...I'm hoping that I can find some answers, some help by learning more, talking with others. i have to stop now, it's going cold again.

Another hubby with CRPS II / causalgia
 

Hello all. Thank God I found this site. My husband of 24 years developed CRPS II (causalgia) after a total left hip replacement in 2006. Immediately after the surgery, while still in the recovery room, he was complaining of his left foot hurting and asking me to be careful walking near his foot (he was afraid I was going to bump into it). I was totally confused because he had surgery on his hip, not his foot, and he was still numb from the spinal. It was like his brain knew what his body didn't yet know. As soon as the spinal wore off he was in agony!!!! He was screaming for me to help him he was in so much pain IN HIS FOOT. I never imagined that after a hip replacement his pain would be in his foot. He couldn't move his foot and had a foot drop. At first we thought he couldn't move his foot because of the lack of mobility in the new hip. We were just clueless, scared and so confused. The day after his surgery, I was getting off the elevator on his floor and could hear him screaming all the way from elevator. I was terrified for him. He kept complaining of his foot burning.

They did minimal physical therapy on the hip, with him dragging his foot, and sent him home 4 days later. The surgeon came in one day and told my husband that he probably had a stretch injury to his nerve and that 90% of people recover. My husband said "what about the other 10%" and he said "they never recover." He basically blew us off and was like you'll be up and about in no time.

When I got him home I swear he suffered a mental breakdown from the pain. He started hallucinating I think from the combination of oxycodone, oxycotton, backlifen, and whatever else they had him on and the constant pain. He couldn't get comfortable. The bedsheet touching his heel and wrinkles in the sheet drove him crazy because it caused such intense pain. I couldn't put any bed covers over him because he couldn't stand the touch and a breeze coming in the window was terrible. I could only stand him up out of a hospital bed once a day to wash him and get him straight back in bed.

Finally we got him to a neurologist who sent him to a Pain Clinic. The doc told us he thought it was RSD/causalgia and did two sympathetic blocks on him but they offered him no relief. The doc said it couldn't be RSD because he didn't respond to the blocks. But when I took him back a year later he again referred to my husband's condition as causalgia. This doctor then recommended a spinal stimulator to help reduce his pain but my husband is so afraid of another doctor performing a surgery on him that he's not yet willing to do this. Every month he has to go to his primary care physician for a refill on his pain meds (recommended by the Pain Clinic) and they act like he's a drug addict. He takes oramorph, lyrica, vicodin, celexa daily. He has a lot of trouble sleeping at night. He continues to try and do things around the house but what used to take him a short time now takes him days. He said he has not been pain free in 2 years -- it's been completely constant. The burning is not so bad now but it is more dull, searing and stabbing pain. Before he was diagnosed they put him through an EMG which about put him through the ceiling and they documented they couldn't continue with the procedure but it showed that he does have nerve damage. I had to quit my 25 year job to cash in my pension because he had no disability and work elsewhere. It has just about ruined our lives. We no longer sleep together because of the pain he's in, the intimate part of our marriage is nearly gone. I feel so bad for my husband.

Interestingly enough, my daughter also had to have a lymph node removed this past week in her armpit and while in the hospital the lady in the next bed told us she also had causalgia and she recommended her neurosurgeon to my husband. She just had the spinal stimulator implanted. Can anyone tell me if they are effective? What is the recovery time for an implant?

Hello to Everyone
 

I was diagnosed with C.R.P.S/R.S.D a little over a year ago. It happened after an injury to my right wrist ulna impaction and a arthoscopic surgery. Have had 6 nerve blocks in my neck (not fun) they have offered me lidocaine infusion?? I have said no thank you to that. I am on Novo Norotriptyn right now (think I'd know how to spell it by now! lol) have tried Gabapentin and Lyrica.
They say it doesn't spread but my body tells me otherwise. The pain specialist says the nerves can do that sort of thing about the random stabbing pains I have been having in my left side, and my feet.
When I wake up in the morning I can hardly move, my shoulders, neck and back are very stiff. I can only sit, drive walk, lay down for short amounts of time, otherwise I start hurting and aching more.This condition does make life feel like hell. With all this going on I am dealing with WCB & money problems due to all of this. Stress does not help this condition at all.
But knowing that others with this condition know what is going on, and can understand helps ALOT. Being alone with this condition, feeling like you are crazy, or going crazy, and that Drs act like you are exaggerating is frustrating. So hellooo, hope everyone is having a painfree day!