My name is Crystal. I was diagnosed with RSD/CRPS 9 years ago. Only I have suffered since I was, well, born. Im 27 now. I walk like a 99 year old amputee, I move like molasses out of a freezer, I think like Im too old and wise for my age, and I love my life. I've peed myself because of laughing, inability to walk, and of course pain. I have no friends.. Or should I say, no friends have me? !?!?!?! I have a low tolerance for inept, lazy or just plain ignorant people. I refuse to live off narcotics. I found the man of my dreams and married him. I have 2 dogs that weigh more than most teens do.
I demanded my doc PROVE to me he was right when he said it was RSD. I've had 27 surgeries. Im a rare case of RSD, it has crossed paths of my body and infected both sides and now is working on my upper torso. I laugh in RSD's face. Unlike most women, who terrorize themselves over weight, beauty, popularity, I terrorize myself over actually cleaning the whole house in one day, cooking a meal for my husband, and going to the 12 docs in one month. I dont brush my hair daily, it hurts, I dont want to burn that little amount of energy on THAT one task, and my husband likes the "got stuck in a tunnel during gail force winds" look.
On a serious note, I know the pains and agonies of this disease, I've had it my whole life. 29 docs it took to find the right name/reason for my problems. I've had every diagnosis under the sun, including one dr telling my parents "she's just an overweight, unsociable, depressed kid." Partly true, I was overweight and depressed. BUUUUTT the inability to get up and go like the other 9 year olds does a number on one's head.
I suffer from many other health problems, R.A. O.A. Gout, arachnoiditis, salandiatis, sjogrens, lupus, insomnia, chronic sinuitis,fibromyalgia, osteoperosis, and of course depression.
AS you can tell I have the immune system of a turd.... But in the mist of all this I have a wonderful husband that cherishs me, loves me, spoils me, and puts up with me. He will cancel guys night out to stay home and play cards with me, he will run to the store for tampons even if EVERY person he knows is in the store at that exact moment. he proposed to me while I was on crutches (had been on them 14months by then) with a cast up to my booty cheek. He said it was the best time to ask, since I couldn't run. ( had him fooled, I've never been capable of running)
He is willing to have a vesctomy so I dont have to indure any other surgeries that arent "life altering for the better." He loves our fur babies like most would love their skin kids. he rushes to my side when I fall while walking on flat surfaces, and laughs when he knows he shouldnt.
I learned to deal with my pain and heartaches from my mother, who suffers from dibiltating disorders. She doesnt understand the RSD but sure tries. Nobody around me understands it. They dont go through it. I have had friends, and lost them. They are scared of me, maybe they think im contagious or maybe its too hard to deal with. Either way I understand. I've never asked why me. I am actually thankful that I, instead of my sis got dealt this hand. She wouldn't have survived 18 years, let alone 27.
I need support for the days I feel it the most, have tried shrinks, they just want to dope me up, or tell me that I am doing fine on my own, why spend the money to see them...
I went to an actual support group once for pain sufferers, but when your the only under 50yr old in the group, its disheartening. These elderly people worked and tortured their bodies for decades to end up in pain. I was merely born.
I only need 1.5 semesters to have my assoc in criminal justice. But I had to drop out because I am unable to get around the campus. I havent had the urge to go back, no time with the doc's and trying to live my life to the fullest.
I have not worn socks or real shoes in over 12 years. I would rather slam my head in a vault door than feel my feet wrapped in any fabric/constricting materials. I snap at people when Im in so much pain but refuse to give in to it.
My dogs are trained to the words "watch feet" and actually know what that means. One has not had his tail docked and is learning to "hold tail" so it doesn't wack my legs.
I've learned how to live in Illinois with freezing temps and unable to wear pants or any clothing that touches my lower legs or lower arms. Im almost always barefoot. During the winter my hubby has been trained to look for signs of frost bite, since I cant wear socks and dont have "true" feeling in my toes, he helps me watch to make sure I haven't deep froze any digits off.
I fall, alot. I cry at stupid things, Im obsessed with other people's feet. I watch them constantly. I hate feet.
I wonder what its like to have true feeling in my lower limbs, what is like to walk without pain shooting through me so fiercly that I want to rip someones head off, so that they may understand what I feel.
I answer "does that hurt" with " if I jabbed you in the eye with a hot stick, would that hurt?" I've learned that its better to misplace your wedding ring than have it cut off from being too stubborn to remove it when your hands swell. I've made little kids cry when they looked at my "multi-colored" legs with the scars and battle wounds. I've possibly prevented some tweens from doing drugs, when they asked "why your legs look like that" I've responded with "well when I was about your age I decided to try smoking pot, and the next day I woke up and my legs were like this."
The world as taught me to be hard and mean, and still be able to stop and help an elderly lady with her bags. I dont mind the people staring any more. I still get offended by lazy people, they have no clue what they are missing. One thing I can say is I cant wish for my life to be any other way, that could be the bad way. Without pain I could have turned out skinny and a slut, or an addict, or even *shutter* lazy. My life is mine, painful, but so full of love and trials that only I can live it. I do wish to find some common "grounded" friends or associates. There are things I dont handle well, and I think with the help of like minded (or should I say like-pained) people I could better handle some things.

Oct 26 2009 I had a minor foot surgery removal of neuroma, a cyst on foot and shaved off bunion.

One month later my leg turned a different color. It would be red or blue; my foot was swollen and also discolored.

I had severe burning pain knife like in my foot and lots of sensitivity and needle like pain.

I have been taking Lyrica and getting Lumbar Blocks. It is better now my leg is not discolored. I can walk more normally. I still have sensitivity, tingling, discoloration of foot, skin looks shiny and swollen.

Hello! My name is Courtney and I am a 21 year old girl, who finally after atleast 4 years of searching for answers was diagnosed with CRPS! I am new to NeuroTalk and just wanted to tell my story and get started with a support team of people who understand what I am going through.

When I was in 4th grade, I was a competitive gymnast and was getting ready for a competition the next day. I was practicing my vaults and when running, felt a pop in my buttock area. After a doctor vistit and MRI it was discovered that I had avulsed my ischiam in my pelvis. Since I was so young the treatment was to stay out of gymnastics a few months and let the pelvis heal on its own. After a few months I went back into gymnastics and trained and then ended up quiting and started cheering competitively as well as as school.

My freshmen year of high school, I was dropped doing a stunt and landed on my butt. After going back to the dr. and another MRI, result's showed either a re-tare of the ischiam or that it never healed originially. I quit competitive cheerleading and layed off the activity. Pain worsened and worsened through out the years and my leg began to have tremors and shakes when it got tired and was hurting bad. My senior year of high school the pain overtook me and I basically became paralyzed, and in so much pain even to touch my foot would completely un-nerve me. I was taking hydro-codiene and morphine at home and it hardly even touched the pain. Every doctor I saw would take a look at x-ray's and tell me "they wouldn't touch me with a 10 ft pole." Finally, after many dr's, I found a confident orthapedic trauma specialist that said that he could make me better.

Surgery was perfomed. The bone that I had avulsed has entraped my sciatic nerve. The bone was removed and my nerve was released. The night after the surgery I could already tell that I was better! Within a week I threw out all pain medication and was begining to walk again.

About 2 months later I was jogging and felt the same familiar pain shoot down throught my toes. Back to the doctor for more MRI's. Results revealed heterotopic ossification in my muscle adjacent to the sciatic nerve. My surgeons exact words were to suck it up. Determined that I didn't HAVE to live in pain, I searched for doctors. I went from orthapedic surgeons, to neurologists, to back specialists, since my pain had began to go into my back as well. One orthpedica trauma specialist told me it was in my head and I was making up the pain.
Therefore, I decided to put myself with a psychologist and pain management doctor. The psychologist told me that I was fine, I was just in pain, and the pain management doctor put me on different medications that gave me headaches and horrible side effects but never helped with pain. I even tried one medication that gave me mood swings and suicidal thoughts.
Finally, after researching online we found a wonderful doctor at the hospital for special surgery in New York. We traveled to New York to see him. Which was the first place that RSD/CRPS was mentioned. Me, being sick of doctors ignored this, by my mother went home and researched it. The New York doctor prescribed a lumbar sympathetic block to be done at my pain clinic back in Texas. My pain management doctor was completely convinced that this was not the case and that this block would not help me, but he agreed to try it out. I had the block and felt immediate relief! It was like a new me, and I had never felt that good in my life!!! The temperature difference when the block took was a 10 degree difference, which my pain management doctor was pleased to say that it was afterall a succeful block.
The block lasted me about 9 months and I received another block in December of 2009. The second block took just as well, but my back pain was getting worse! I proceeded to go see back doctor at Texas Spine Team. Who took MRI's and referred me to another physiologist in his center. The MRI's came back nomal. Even the heterotopic ossification and dissapeared, which in our opinion was an unbelievable gift from God! Good news, which also confirmed the bad news of CRPS!

My physiologist talked to me about options, but listed me a favorable to recover! I know I have a long road ahead of me, and I am willing to do anything to get better!!! I am excited to have found this website, where I cant talk with others in pain, and we can give eachother positive feedback!

Anyways, that's my story! Can't wait to hear from everyone!!!

I am 28. I was diagnosed with RSD in March 08. I have had many sprained my right ankle many times through high school. Through most of high school I stayed on cruthches due to the intense pain in my ankle. I would have MRI after MRI to be told it was in my head. I would do physical therapy, and to no avail it made it worse. My doctor kept treating me like all I was, was a teenager looking for my next high. But the truth of it was that I was a straight A student that had never smoked, drinked, or did any kind of drugs. He told me just to take aleve and that should help. This continued for years until I fell again in December 07. When I fell, I went to the Er. They put it in a splint and told me to see an orthopedist. My ortho doc here in town did not take my insurance. At the time I was so upset but, it turns out it was a blessing. Since he did not take my insurance I had to start looking elsewhere for a doc. That is when I found my ortho I am now seeing who knows alot about RSD. After being in a cast for 6 weeks, the pain was still very much there. I told him of my troubles since high school and he said he believed it was RSD. He then sent me to a pain management doc. They are like very best friends and would talk about my case together. I had a triphase bone scan and some tempeature test done which then comfirmed the diagnosise that had been many years in the making and suffering. I then recieved a lumbar spinal block which did make temperature difference but not a pain difference. After many attempts and a epidural drip for 5 days inpatient, I had a spinal cord stimulator implanted in April 09. This has helped so much with the pain but the battery is so sore. They have me taking Gabapentin 800mg, Hydrocodone10-325, orphenadrine 100mg, meloxicam 15mg,sertraline 100mg, buspirone 15mg, and trazodone 50mg. I see them as well as a physciatrist to help with the depression that just comes with it. I am so glad to have people to understand what you are going through to talk to. I look forward to talking in the future!!

Hello, all!

I am new to this RSD hell and new to this forum. I have spent the evening reading tons of posts and you all seem like a super bunch of people!
I look forward to sharing stories, tips, highs and lows and, most importantly, laughter!
Gentle hugs to you all,

Kelly: grouphug:

I am sorry for your loss by the way.. Wanted to state that first.. I was working in a nursing home.. Just been there 2 months and a resident got violent.. i got hurt on left hand.. wc put me on light duty for week. went back to nurse practioner and she released me after i told her it was still hurting badly.. went back on christmas day in 08.. what do u expect happens? reinjures the hand.this time it shoots up my arm.. now i have it all the way up in my shoulder and into right shoulder and feels like its moving down right arm.. and my doc says there isnt anymore i can do for you.. i have no pain meds that have ever helped me... I am suffering alone. work comp hasnt paid one dime for my meds.. and on the 1-10 scale i am way over 10 more like 30,,,
i lost my job shortly after my second injury.. 6 months later hubby lost his job.. we are living on my unemployment and 70 bucks a week.. walmart hired me with restrictions,, and now wants to fire me cuz of those restrictions.. so i feel for you.. i really do.. so if u ever need to talk email me and ill give you my number and u can call me or ill call u.. cus i just had to go on antidepressants

I recently became a victim of rsd..I had my first injury on 12*12*08 and the second on 12*25*08 and were not positive which one caused the rsd.. it is progressivly getting worse. it stayed in my hand for several months.. then it went to the elbow.. wasnt awful but it still hurt pretty bad. hit both shoulders.. now the elbow is worse than the hand ever was and the should on right is getting much worse..i have had stallage ganglion blocks,, no help.had a beir block no help.. have tried emla cream became immune..basically i have no meds to help me.. my last pain doc told me it was all pain med control and he couldnt help me. now this is all work comp. and from reading we all know that they arent paying for my meds. and lyrica is high dollar and i dont have the money to pay for it.. hell they fired me after i got hurt.. lost my house. hubby lost his jjob cuz of economy.. this has been horrible for us.. I finally had to go on antidepressants. just for left arm my disability rating is 59% for the whole body.. 99% for the arm. and so for noone has given me any hope.. so if anyone has hope please share.. or knows of a good doc that can help me please let me know...
thanks

Hi. My name is Anita and I was diagnosed with RSD in the left arm in Jan of '08. I fell at work landing on my left elbow which drove my shoulder straight up. At first it wasn't so bad, I was sent to physical therapy but after 2 weeks I wasn't improving at all. About 30 minutes after I would get home my arm would swell up, then it began to turn purple and get cold. At work it would turn almost black and it would be literally as cold as ice. I couldn't get the treating physician's assistant or the physical therapist to listen until it happened during physical therapy one day. I was taken around to the assistant who didn't have a clue so I insisted on being sent to someone who could tell me what was wrong. I went to an orthopedic specialist and he knew immediately what it was and sent me to another doctor to see what he thought. During this time I was still on full duty at work (which is heavy type of work) until the doctor realized that it truly was RSD and he began treating it. I went through a series of tests and medications, none of which seemed to work. Right now I'm on Lyrica, Mobic, and a Lidoderm patch which seems to help the most. Right before I was declared at maximum medical improvement I was sent to another doctor to see if he agreed with my doctor and he did. We all discussed doing nerve blocks but I wasn't really for it. My case isn't severe yet, it was diagnosed as CRPS II, and I didn't want to get a nerve block that they said would only last a few months and then have to learn to deal with the pain all over again. I was also told that often when the pain returns it is far worse than it was previously. Like most every one here, people just don't understand what you are dealing with and why you can't sleep and how bad that awful burning sensation is. I describe it as a bad 2nd degree sunburn that someone is scrubbing with scratchy wool, then there is that creepy sensation of spiders crawling up and down my arm (of course one time there really was, kind of funny), and the deep bone pain. I recently lost my job because of this, the workplace decided after 26 months to try to force me to violate my restrictions and when I wouldn't they said they are putting me down as a "no call no show" whether I show up or not. That's frustrating, my daughter, who is a single mother, is having to support me, she works 2 jobs and is just exhausted but really is wonderful support. It is great to have a place to go where other people understand everything you are dealing with. I look forward to getting to talk other people here.

Hi! I'm Water Rabbit!

[QUOTE=frogga;57601]Hey;

Most of this is copied from earlier on - but as it took me days to write I don't want to have to retype it!

Basically (if you can't be bothered to read this as it is very long and boring). I got RSD when I was 16 after injuring my right wrist and I am 21. In that time it has spread full body and I have developed secondary dystonia which is also body wide. I have just started at university and am studying psychology. I am in a wheelchair and have a live in 24 hour carer. I love animals and have 5 cats and 2 dogs at home and unfortunately none at uni. I used to be very musical but now prefer hanging out with my friends or reading.

Take care and pain free hugs!

Rosie xxxxxxxxxxxxxx (a.k.a Frogga)

<snip>
Hi Rosie!

You history was not "boring" at all, but very informational and helpful!

I've had chronic pain since I was a child, am now in my 40's and yet the RSD is new to me. I NEVER thought I would be asking ANY doctor for a wheelchair, but in the last few weeks I've done just that!

I've considered having a live-in caretaker, and may not have a choice if this gets any worse.

Have you ever thought of writing a book on RSD/Dystonia and your experiences? feelings? treatments that worked for you, and those that didn't?

My RSD happened after I'd had the flu for about 3.5-4 weeks (H1N1 I believe, as a friend's children had just been given live H1N1 vaccine, and my immune system is, well... not the best.)

I've been tested for (and misdiagnosed, as the doctors gently put it) a few times now. My RSD started in the big toe joint (metatarpharengeal joint), and has now spread up my leg. I already had chronic pain problems, which are FAR worse now, as a result of bed rest I'm sure, and I too am concerned about this spreading.

I've had muscle jerking, like I had before, yet seriously far more pronounced, and harder to "hide" than it was.

The docs think my RSD started from an old back injury, a 20-year-old back injury, which I'm told is quite rare.

If I listed all the diagnosis I've had over the years, I'd pretty much cover about half the Merck manual it seems!

I am tired, and I too had vascular testing, which was thought to be a clot, until the cardiovascular surgeon saw the pictures I took at the hospital, the swelling, and realized the "non-compressable veins" were actually already compressed by the swelling. He's going to retest in a couple of weeks to be sure, and be sure my foot is up and hopefully not as swollen as it was for the next test, but the tech that did my duplex in the hospital didn't even measure my swelling (A common mistake), never noted it anywhere, and I was SO glad that I started keeping a photo diary. It's difficult for me to write by hand b/c nerve damage from anther injury (dog bite w/ open or compound fractures, and I too had lost use of my entire hand for a year and was told at one point amputation was possible.

I put my foot down, and it turns purple. I put it up, it looks pretty normal.
Still hurts, like you said, even with a fan, and sometimes even a breeze, or the doctor walking by, and not even touching my foot is excruciating. A podiatrist I was sent to early on purposely dropped a piece of foam on my foot AFTER I told him it hurt when he walked by, and then laughed... needless to say, I never went back to see him, and later was told by and Er doctor that this guy only was fit to make a "prescribe" shoe orthotics, and only had a 2-year degree! (some are actually doctors, this guy was not!)

Well, I hope you realize how much your post is appreciated! I'm not in a wheelchair, although there have been days, weeks and months of my life I've pretty well been in bed, so I know what that is like!

Grew up with Graves' disease, and spent much of my time in the hospital since I was 7 years old. I was able to work for a while, and thought I was over it, then got rear-ended in a car accident and have never been the same.

I wonder, of everyone here, how many others have thyroid problems (low or high levels)? Anyone have surgery and or radiation to treat thyroid? Been on synthetic and/or natural thyroid meds? I wonder, if like fibromyalgia, there might be a connection?

Does this run in families? (My mom had an injury while pregnant with me, I'm told, and she had some nerves clipped because the pain was unbearable.) A soda bottle fell at the grocery store on her foot, and she did have surgery while pregnant with me... Make one wonder if this might have a hereditary pre-disposition?

I want to know SO much more!

Any good articles, data, etc. from GOOD resources would be greatly appreciated! I have a strong medical background, and am published in the medical community as well. I did manage to make it through a lot of my schooling, yet would like to complete my PhD in Naturopathy, emphasis in herbology and kinesiology.

Frogga, thank you again for sharing! I left myself out of the relationship arena for SO long... seemed to take FAR too much energy for me... and I feel I do better alone, but do get a bit lonely from time to time.

Until a gal from my church came to work for me, and she'd only seen me on "good days" before then, she couldn't understand why I couldn't get up, or even why I was on disability... Now she kinda gets it, but I hid it pretty well. Few people in my life have any idea how much pain I'm in, the muscle jerking, etc., and I found I may have even held some of this back from my doctors. I might have told them about it, but I never really let anyone see me at my worst, nor did I feel up to being around anyone... too much effort when in a lot of pain to explain my heath issues to someone, or a lot of people. I've even made a form to email to new doctors with my medical history, medications, allergies (which I have MANY - food and medications, pollens, etc.) I quit going to most friends' homes because of food allergies (even someone cooking with olives or olive oil and some other foods can put me into anaphylaxis.

I've never seen a doctor's intake form that had enough room for my allergies or surgeries! Always had to attach it or write it on the back or the form.

Anyone else seem to be allergic to a LOT of things? Have a lot of surgeries?

So... Thank you and that's a bit about me.

I look forward to talking to others that are going through similar things, and if we help one another, perhaps we can unlock some keys to this painful nasty stuff we are dealing with!

Thanks again Frogga! You gave me the courage to share a bit about me!


Anyone else with thyroid issues? Back injuries?
RSD without a recent notable injury or no injury at all? RSD after illness? Flu? H1N1 or suspected H1N1?

Has heat or ice worked better for you?
TENS units? Help at all? Harm?

How do we keep this from spreading? (I've been told and read mixed things!) I want to prevent this from going anywhere else if at all possible!!!

Any good books?

I want to be an expert on this, and am more or less on fibromyalgia, CFIDS and post-Graves' treatment hypothyroidism - AND live with these three and more affecting my body... I'm NOT an easy patient, as if there is some drastic treatment or no treatment, I want to know why or why not, options, and work WITH my doctors, NOT be told what to do!

Anyone have short term memory issues? Cognitive issues?

Hi! I'm not really sure how these forums work, so I'll have to play with it when I have time. If I don't reply right away or do the fancy friend things, please be patient with me.

My 16-year-old son was diagnosed with RSD this last Nov. 2009. He actually had it before in his right foot when he was 10, and it was awful, but he was miraculously healed after only 3 weeks. We took him to Texas Children's, which was a miracle that he got seen right away, and to another ped. neurologist, and they both diagnosed him and started him on Neurontin. When he was healed, they both said it was a miracle and to thank God, which of course, we did.

He's been having some residual pain off and on since then, but few and far between and still very active and normal. He even had some sprained ankles and torn ligaments in his right anke and it took longer than most to heal, but he was okay, thank God. Then out of the blue, it came back in his right ankle. We took him to the orthopedic who put him on Daypro or Ultram and said he would be fine in a few weeks. After a few weeks, he was worse and said that it felt like the RSD was coming back. Whoever heard of someone getting worse after they've been healed? But he definitely has it, although he doesn't have that horrible alloydia that he had before, and he is able to walk with considerable pain. He had the first nerve block at the end of Jan. which worked immediately but faded to nothing after 3 days. He had a 2nd nerve block a week later because his pain was back up to a 10 with taking 8 Vicadin a day. It was also immediately successful but lasted only 6 days. He's only taking 3-4 Vicadin a day now and still doing physical therapy 3 times a week, but it hurts. He's started having headaches and disoriented thinking so we're going to see the dr. this Friday. I'm wondering if he'll want to do another nerve block. I'm hoping he'll think a ketamine infusion would help and that he's able to either do it well or recommend a dr. in Houston that does. Thanks for this site. It's really helpful and seems very supportive!