RSD In All It's Glory...

i was in the best shape of my life.  i'd always been a fit woman, having always participated in sports.  i played sports in highschool and on leagues throughout my life.  i went to the gym every other day after work.  despite my active youth and fixation on my body, i was leanest at 27 years old.  i was also the healthiest i'd been in my whole life.

it was a very cold night in early 2004.  i had volleyball league and decided not to go to the gym as there wouldn't be enough time for the commute.  we played the first two of three games.  the opposing team won the first game.  we also lost one of our setters during that game.  she blew her knee out and it was visibly obvious.

we were playing in a newly constructed gym and the floor was rather sticky.  i had on brand new court shoes and had only played in them four times prior to that night.  i hadn't played court ball in years.  i had been playing on two sand teams when i was approached by a lady at work to fill in for her court ball team.

we were in the third game.  we needed one more point.  it was their serve.  it was headed my way.  i needed to move approximately 3 feet to my right.  it was coming hard and fast and began to veer further from me.  i dove for it.  it was the only way to save it.

it felt like my feet were cemented to the floor.  the very second i moved i felt and heard, at the same time, POP POP POP. and i went down hitting my head hard on the cold, wood floor.  i'm fairly certain i screamed an expletive of sorts.  everyone came rushing over - they KNEW i was hurt seriously.  luckily one of my teammates was a nurse.  the ref cut off my knee pad and deduced by the way i laid there that my femur was broken.  the nurse called an ambulance for me.  during that 20 minute wait i went into shock.  i woke up with paramedics removing a pile of winter coats my team had piled on me to keep me warm while in shock. 

the paramedics slipped a sheet underneath me to assist getting me on the gurney as i was simply NOT moving.  they interviewed me to isolate where the main injury sustained was.  i complained of my foot/ankle, knee and hip.  they went to cut my shoe off.  my BRAND NEW nike court shoe!  this would leave me with only one of them.  what good is that?  NO WAY!  i can get it off without you cutting my shoe!  they, at that point, immediately dismissed the possibility of a broken ankle.

i recall waking during the ride to the hospital and asking what junction we were at.  i was never before so anxious to get medical attention.  i went back to sleep ... i think.

i woke up in xray.  i complained of my foot ... the pain in my foot was intolerable ... beyond anything i'd ever imagined.  they ignored my complaints and went on with the xray of my knee.

i was put in a room surrounded by sheets next to a lady who moaned for hours.  i'm not sure if they gave me an IV or not ... they must have.  i'm pretty sure that's standard practice not to mention i recall having a seriously difficult time maneuvering into the small restroom from my wheelchair.  this was the first time i realized i had a monstrous, NASA-space looking brace on my leg.  i recall them telling me they were going to give me something for the pain ... morphine ...

i wake to my alarm clock the next morning and next to me is the hospital paperwork.  i'm not to go to work for the next three days.  this is a serious problem considering i have a staff meeting first thing and then a presentation with one of my largest clients immediately afterward.  plus i'd finsihed the proposal right before leaving for my game and it was located on my laptop that, of course, was at my house.  there was no choice ... i had to go to work that morning.

i don't recall the drive in.  i recall my manager giving me the 3rd degree for being there.  while in the office i called the doctor i'd been referred to.  they couldn't get me in for a week.  i only had 3 days excused absence and as i sat there the pain began to take over my whole body.  i realized how serious this was.  the office name of the doc sounded familiar.  thankfully they were one of my clients.  i called back speaking to the administrator this time and was able to get my appointment moved up by 5 days.  i don't recall my drive home.  i do recall the neighbor having to carry me into my house.  i simply could NOT move ... it hurt too badly.

after seeing the specialist it was official.  i'd done some serious damage to my knee.  but why did my ankle hurt so terribly?  he looked at it after asking me questions about the incident.  i told him about the POP POP POP being my ankle first, knee second and hip third.  this is a sound and feeling i'd hear and feel all over again for years to come.  he then tells me i've dislocated and relocated my hip as well as messing up knee.

surgery is scheduled for 30 days later.  in the meantime i'm to complete physical therapy on a daily basis.  i'm released to go back to work and told to take ibuprofen or celebrex as well as some pain medication on a regular basis. 

with each passing day the pain grew worse.  i couldn't collect my thoughts.  i got more and more confused.  the pain became so much that it was, quite literally, blinding me. 

in week three i called into work.  i HAD to see the doctor that day.  my knee swelled up to the size of a miniature basketball and had turned the color of a beet.  you could feel the heat radiating from it six inches away.  it was burning up!  the specialist was in surgery and they advised me to go to urgent care as they were concerned about some kind of skin disorder which is very infectious and common after joint trauma.  it would postpone surgery.  the urgent care doctor released me saying i didn't have this skin problem but i was suffering from 'normal' symptoms of this type of knee injury.

thank goodness there was only one more week before we could get this fixed once and for all and finally get some relief.

surgery day came.  who in their right mind gets excited about surgery?  i was!  i couldn't wait to end the pain.  i was sure it would kill me.

the next thing i remember is screaming in pain as they rolled me into recovery and again when they rolled me into my room from recovery.  i was kept in the hospital for 3-5 days (i don't remember) afterward.  it should have been an outpatient procedure. 

the MRI didn't show the extent of the damage.  i'd completely destroyed every ligament, tendon and all the cartiladge in my knee.  it had to be rebuilt via my hamstring as i was NOT taking any chances of my body rejecting a cadaver hamstring.  i just wanted it fixed and the pain gone.  the surgery took 2 hours longer than expected.

i noticed during my hospital stay that the pain continued to increase.  i saw the doctor every day and he'd ask me how i was.  all i could do was cry.  the pain had not gone away.  it wasn't fixed in my mind.  as a matter of fact it was worse.  the nurses seemed to be so careless.  they hurt me continually.  but i'd find out later they weren't being abusive.

i was released from the hospital.  my remarried exstepfather would take me to his house so i could be looked after.  he owned his own company and could stay home with me.  i was to be off work for 4-6 weeks.  LOVELY!  i had the distinct priveledge of staying there forEVER it seemed.

i went to therapy every single day, sometimes twice per day.  it was horrible. scar tissue began to form.  my once beautifully shaped leg now had the appearance of an orange with a toothpick sticking out the bottom and the top.  i couldn't bend my knee.   my knee was literally locked in place.  i couldn't bare any weight on it.  i couldn't stand for the therapist to touch it. 

i saw the doctor everyday for the first week, every other day the second week, twice the third week then we moved to once per week.  each time he'd ask how i was doing and the only thing i could do was cry.  i couldn't even verbalize it.  he tried repeatedly to get me to pinpoint the precise place where the pain was the worst.  there was no particular place, it was from my toes up to my hip.  i kept complaining to him that my ankle was broken.  i was convinced.  he xrayed it.  nothing.  how could it show nothing when it hurt so badly?  something HAD to be wrong!  he would send me away reassuring me that i'd just had major surgery and pain was normal. 

i bucked up but it helped nothing.

i went out of town for a week.  the carride was AWFUL!  even without hitting any bumps, the vibration literally went right through me and simply caused the already intense pain to increase 10 fold. 

while there i was unable to get cellular service.  on sunday i finally got signal and called my voicemail.  it was the specialist.  he wanted me in his office, 8 hours away, the next morning.  we headed out for another grueling carride.

it had been 7 weeks since surgery.  the specialist looked at me again.  he ran his hand up and down my leg stopping here and there.  he'd apply pressure in certain places and, of course, it sent me through the roof each time.  he'd not done this before.  i hadn't a clue what he was doing.  i sat there crying in pain as quietly as i could.

he left for a few minutes.  he brought back a card with another appointment written on it for the following day.  he explained he was sending me to a new specialist and that he felt i had suffered nerve damage and that is why, he felt, i was having such a difficult time with pain and also why i was not healing properly.  he wanted this other doctor to confirm his worst fear.

the next morning at the new specialists office, he'd do the same thing - running his hand up and down my leg, stopping at certain points and applying pressure that would send me into a frenzy of tears.  he asked me several questions.  why is your leg so cold?  is it always this color?  why do you have goosebumps, are you cold?  etc. etc. etc.  my answer to every question was that i'd had the compression ice cuff on it a few hours earlier.  he didn't like that answer and replied that these affects should have passed in the 3 hours i'd not been wearing it.  i was kept there for several hours of observation.  upon release i was scheduled for another appointment.  this would be a 'procedure' as this new specialist had confirmed the knee specialist's fear ... i had RSD (Reflex Sympathetic Dystrophy.)

i was instructed to no longer use ice ... this was the only thing that seemed to help the pain subside any at all.  it didn't help much but if the skin was frozen at least it was somewhat numb.

two days later i went in for this 'procedure.'  i still didn't know what RSD was.  i knew what it stood for but had no clue the implications it would have on my life.  the 'procedure' was AWFUL!  they put an IV in me, wheeled me to another room, rolled me onto another bed face down, gave me a numbing shot in my back and then they took a needle 10 inches long and stuck it through my shoulder and spine muscles in my back straight to my spine column.  it was all on a monitor in front of me for my viewing pleasure ... well not really ... it's a special table called flouroscopy.  it takes instantaneous xray so the doctor can see where he's placing the head of the needle in the spinal column itself.

i have NEVER felt anything so uncomfortable in my life!  the pressure was immense.  the needle going through my muscles made them contract violently.  my back flexed backwards instantly.  i thought it would break i was bent backwards so far.  they kept telling me to "relax" ... AS IF!  not bloody likely, people!  geez!

i went through two more of these 'procedures' referred to as lumbar sympathetic blocks before the orthopedic surgeon would tell me we needed to do another knee surgery.  all the while i was reading up as much as possible on this 'RSD' i supposedly had.

he scheduled a 4 hour block for surgery.  it ended up being an eleven hour procedure.  other surgeries scheduled for that day had to be rescheduled.  those poor people hadn't eaten in 24 hours ... God only knows how long they waited beyond their scheduled time only to find out they wouldn't be getting their surgery that day and would have to fast yet again another day.

again it should have been an outpatient procedure.  i was kept in the hospital another 3-5 days.  i don't remember that visit either.  however, i can tell you the nurses were much more gentle with me this time knowing that i was suffering from this 'RSD.' 

i would go through a total of 39 lumbar sympathetic blocks.  i received minimal relief from them.  the constant goosebumps disappeared.  the discoloration got somewhat better.  but over all ... i was still a mess.  the pain specialist told me he wanted to "fire his last bullet."  he suggested an electrical device be implanted in my spine.  it would send impulses of electrical stimulation down my leg to confuse the pain signals on the way to the brain.  hopefully it would allow me to function, at least it would provide some relief, right? 

19 hours after the trial implant it was removed.  my body rejected it.  it actually caused the pain to increase and made me physically ill.  i got the worst headache, i couldn't eat as i couldn't keep anything down.  it was BAD!  i was so happy to get that thing removed.  but where do we go from here?

4 weeks prior to this final 'bullet', as the doctor would say, they began weaning me off my medications.  this was to provide an accurate analysis of how the device (dorsal column stimulator) was operating and how much of an affect it was having on the pain.  i asked the doctor what the next step was.  he said he didn't have anything else in his "bag of tricks" and that i'd have to find another doctor.  unfamiliar with RSD and what you need, what you do, what you go through i was quite concerned.  what kind of doctor do i need?  how long will it take me to get in to see him/her?  i asked the doctor if he'd be willing to take care of my healthcare needs until i could see another doctor and if he'd refer me to the new doctor.  he dismissed me with no prescription, no referral, no advice and no goodbye or goodluck.

i went back to the original surgeon.  it was 2 weeks before i could get into see him.  i had now been without medication for 6 miserable weeks with a failed attempt of a d.c.s. which actually flared things up worse than where they were... i didn't think that was possible.  it was. 

it was another 6 weeks before i could see this new specialist my surgeon referred me to.  i'd been without medication for 3 months.  i'd become suicidal during that time.  i didn't think about suicide that remember.  i just recall literally waking up on the bathtub bench with a straight razor to my wrist.  sometimes i wish i'd have done it.  i simply didn't have the guts to do it.  but how'd i end up there anyway?  that was WEIRD!  and why the bathtub?  it didn't have water in it - like you see in the movies.  the only thing i can think of is that it would make for easier cleanup.  ick!

i was wheeled into the new doc's office.  he'd examine me.  he'd ask questions and at this point i was in such bad shape i couldn't even form words.  i could knod or shake my head.  that's all i had in me.  as i shook and knodded my head during the exam tears ran down my face.  it was not only a painful exam but it was shameful to be in such a state. 

i'd always been raised that to show emotion was a sign of weakness, that illness is a state of mind and you can "will" yourself to be healthy again, etc.  how'd i become so physically, mentally and emotionally weak?  how is it that i'd been hurt so severely while in the best shape of my life?

immediately this doctor put me on a regimen of medication, physical therapy and psychological assistance. 

i went through all of his recommendations for different types of therapies, 2nd opinons, education on the condition, etc. 

i did a LOT of research on this condition that now seemed to be a death sentence.  you can find the same facts at:  www.rsdhope.org   www.rsds.org   or   www.rsdrx.com   

i'll share a few of the stats with you:  RSD is the most painful condition known to man - bone cancer being a 27 on the McGill pain scale and RSD being ranked a 42.  75-88% of RSD patients end up committing suicide to escape the pain.  11% of those remaining 12-25% end up in a wheelchair or bedbound.  RSD is INCURABLE.

it took me 20 mos to learn to walk again.  i still use a cane or crutches depending on how bad of shape i'm in that day.  HOWEVER, i have seen a small degree of relief in the past 18 months thankfully.

i see about 4 months of a somewhat normal life each year.  the remaining 8 months are miserable and usually keep me in bed.  i'm still unable to work due to the pain, edema, sleep patterns and mental clarity - i simply am unable to think like i was once able to.

i was also married and divorced since injury.

most recently the RSD has caused some hormonal changes in the pituitary gland.  the abnormal pituitary has caused a thyroid change.  and these two have caused problems with my gall bladder. 

i recently found out the doctor i'd been seeing for the past 2.5 years feels that i'm not going to make anymore progress and he wants me to find a family doctor who will take on my healthcare maintenance to include the RSD and the prescriptions that go along with it. 

with the requrements of my insurance accompanied by the hospitals and their agreements with the family doctors, i would not be able to continue my maintenance ... for ins. to cover it they must be PPO participating.  in order to receive maintenance they have to be a specialist.  a family doctor cannot prescribe certain medications - a specialist must.  there are 8 specialists in my area - 6 of which are in the same office of my current doc so they wouldn't see me saying it is as if they've already seen me.  1 of the 8 is retiring and the other one took on the retiring doc's patients and is not taking any new patients at this time.

for two weeks i searched for a new specialist.  i called my insurance company and told them of the problems.  they were of no help.  i was STRESSED OUT!  i didn't realize how stressed i was.

i made an appointment 6 weeks ago to see a new family doctor.  i needed a family doctor that would work with my RSD doc closely especially since there are complications beginning to arise.  i saw that doctor 2 weeks ago.  i beared my soul to the man.  i told him all my faults as a patient.  i was ashamed.  but i wanted him to know my personal habits and my PAST habits that i no longer am going to do, i.e. weaning myself off of meds without a doctor's consent.  i told him where i stood with my RSD doc and that i'd need a referral to a new specialist.  to my surprise this man decided to take on the entirety of my healthcare to include the RSD and maintenance!!!  what a relief!  i sobbed uncontrollably when he told me.  i couldn't help myself. 

that's 3.5 years of h3ll in a condensed version.

thank you for reading my short, yet lengthy story.  i wish you much health and happiness.

AbbyNormal AbbyNormal
31-35, F
33 Responses May 28, 2007

As you can see, RSD is quite complex and its causes are not known. at http://calmareaz.com/reflex-sympathetic-dystrophy-syndrome-treatment-management/ find what causes RSD and finding a cure for this dreadful disease. So, what does it feel like to be afflicted with RSD? Thanks !!!

Abby, it sounds like you have rsd/crps ! Doctors that don't have a clue, specialist which are special at nothing, doctors that WILL NOT see you any more,medication that may or may not kill or cure you, doctors telling you that you need a PROCEDURE which means they will make fast easy money on you knowing that the shots will not work on anyone who realy has rsd/crps. HI, I am TOM and I have had rsd/crps from 1999 to now. I had my right hand crushed in a gate in a prison riot and I had pain in my hand weeks later which I was told it was in my head.I had pain slowly go up my arm to my shoulder and down my right hip to my knee. 11 months later my family doctor said I had rsd. 3.5 years later comp. agreed that I have rsd/crps and they think it will go away. ?? I have been to over 40 doctors and specialist and have had so many test and the needles in the front of the throat to the back of the spine. I was told I had cancer of the brain, I was hit with lighting, I had pinched nerves, I had sliped disks. I had a brain tumor. I was lost for years as the doctors told me all this crap.I gave up my sandblasting and welding business and I had to retire from n.y.s. corrections and I lost my wife, my two son's ,even my dog. I have not yet met a doctor who knows what to do other then touch my arm and stick me with sharp ob<x>jects to see that I have pain. I have been on methadone for 10 years now and I still have pain 24/7 and I know for a fact when the dam weather man is wrong. T he weather realy hit me hard and the procedures gave me constant back spasms. I have never seen or talked to any one with rsd/crps and I have been at the bottom giving up on a painfull life and I died last sept. from blood colts in my lungs and nowere else in my body. I watched tv for 4 days when it was very hot and bamm/. I am now on blood thinners for life and every time I have real bad pain my blood gets thick and I get blood work every two weeks in the va. and they don't know why either? I know that my whole body is rsd/crps and it also does hurt your internal organs. I am alone and have no future of any kind because NOBODY understands what I go through and I gave up on people. I hope you find a strong frind system and hangon to your family. I am sorry if I sound pissed off but, after all the years of this crap with no relife and no answers. Well what would you do? I know that after a few years your brain rewires itself and every thing is different and you just can't help yourself. I hope they find a cure for this but, if they did the doctors ,drug companys,and the makers of the dam procedure needles would loose big money!~! Abby I hope you find relief and your life gets easyer. I hope every one with this disease ( yes disease, it spreads in the nerves ) can find something or someone to make the pain liveabale. GOD BLESS, TOM

Wow....well written. I was spellbound. I cried. It's not fair. I wish this horrible didn't exist. I told my husband some of the statistics and I don't think he believed me. I have recently had a pretty bad backslide (I have had it a little over 3 years). I found out today that after my talk with him (I tried to leave him once because of his insensitivity but didn't) he looked it up on the internet and felt like he had a better understanding of my issue. He told me....I cannot understand the pain you feel, but do realize that you feel great pain all the time and that is awful and I wish I could do something to help you be more comfortable. I just cried and cried.....that's all I had ever wanted to hear him say...and it was way too long in coming. Maybe he will try harder now. Your story makes mine look like a piece of cake, but I felt all of it....the frustration, the pain, feeling weak, doctor, to doctor to doctor, etc. No one knows how to treat it, can appreciate the pain level, etc. People saying....is your foot STILL hurting you. Aren't you ever going to get better? Like anyone would WANT this!! I will try to stay focused. If you could go through all that...than I can do it for just one area of my body. Thank you for sharing your story.

AN, I have RSD in my right arm, and my right leg. I was in the back seat of an SUV, and in the accident I had a small fracture to my hand and my big toe. <br />
When I was diagnosed, the doctor didn't even explain to me what RSD was. He just said, you have RSD. And left the room. In 2004, I went home and googled it. I was mortified that I could have this condition. I am still in denial that I do.<br />
I was treated by Dr Kirkpatrick when he was at USF. He did 3 LSB's and 3 SGB's, using ketamine to sedate me. They were used to block the pain and get me mobile again. I was off and running as if it never happened for 3 years.<br />
In 2007 I was struck by a drugged driver on the highway. I spun until I hit the wall head on. Dr Kirkpatrick was called by the ER doctor. He had them put me on IV morphine to keep the RSD from coming back. The protocol is for an epidural of Morphine. Which I did not receive.<br />
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A few weeks later, the onset symptoms started to present; my arm and leg drawing up into themselves, cramping, and severe burning. My limbs turning cold and blue. I went to Tampa to see Dr Kirkpatrick again. He said, I'm sorry, but the RSD has come back. I thought the treatment would work again. The blocks took. We did them too late, my insurance company didn't think that it was a result of the car accident even though I had 50k in Med Pay. Before he had examined me, they told USF hospital that "this is not auto related, and we aren't going to pay for any of this." The hospital financial service person came into my room to tell me of this. She was an old, but ignorant woman, and told the insurance co. I have RSD. <br />
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My doctor came in. He told me, it was due to the MVA. He write a treatment plan. I was in college and didn't have a lot of money saved up. I had to waste time to scrape it up for the blocks that never worked.<br />
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In the last 3 years I have gotten worse. I moved to Chicago to see better doctors. Dr Kirkpatrick is a greedy man. He wants 20-50k for IV ketamine infusions at his new office in Tampa. The RSD/CRPS Research Institute. You pay to be a part of his experiment. One of my best friends is also an anesthesiologist. He called Dr Kirkpatrick to ask about the Ketamine Infusion. He said he would teach my friend. My friend asked Dr K if he had asked any insurance companies for bids. Dr K laughed and said. "Why would I do that? These people are desperate and in pain. They will pay anything for help." <br />
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A month later Dr K wanted 10k to teach another doctor how to do the infusion. He said Dr K "was weird, and the way he sounded was just strange. He changed his mind. I'm weird-ed out by the way he spoke to me on the phone." This was one of the saddest moments of my life. I felt as if all the hope I had was gone. I can't remember the last time I cried so hard. I felt as if my soul went into cardiac arrest. My friend said, Don't worry. Everything will be ok. It's not that hard. I can learn how to do this." My friend owns a surgical center, and is licenced to do this procedure. <br />
<br />
I had two Lidocaine infusions, followed with lidocaine pills. They do not work.<br />
The Ketamine Infusion at high dose, for 4 hrs a day. For 5 days in a row. Is the only thing that will work, besides the Ketamine Coma. The Ketamine Coma is 50k in Mexico. I need to help my friend cover his cost because he is in dire financial straights right now. I'm trying to figure out a way to come up with the money. It might take a year. But I moved to Chicago to find a good doctor. <br />
<br />
My new doc, Dr Fisher was at U of C doing the Ketamine and Lidocaine study. She is private practice now, but she knows of other doctors doing the Ketamine Infusions for free. <br />
Even though Dr Kirkpatrick is a greedy, despicable man. I really use to adore him, and now I feel betrayed. He is just someone trying to capitalize off of people who are in an immeasurable amount of pain. His webisite does have useful information and is updated all the time.<br />
http://rsdfoundation.org/<br />
http://www.rsdhealthcare.org/ (his new office)<br />
<br />
If you ever need any encouragement or advice. Feel free to post back. <br />
I'm know what it feels like to want to take your own life because of the pain. I deal with it almost everyday. I was an athletic person that would run circles around most people. I can't even believe this happened to me. I'm still in denial that it's getting worse. <br />
I believe this is the cure, and this is why I have hope. I'm 30 now. I won't get the last few years back. But I want to move on. I want my life back. Hang in there. You are not alone.

I just read your story and I have gone through similiar pain to yours- I have RSD or CRPS also but it's due to birth defects that I was born with and the surgeries that I needed to have are what caused the RSD and nerve damage. Please know that you are not alone, ok?

I also Have RSD Or in my case it is Complex Regional Pain Sysndrom Type II phase III with Cause. <br />
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I was 35 I was doing great in my Job. I was in executive management of a company that had over 2000 employees<br />
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I have two kids who worry about me all the time. It started in my right shoulder and then moved down my arm. Then I had Knee Surgery and my other leg swelled for like 9 months. <br />
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I am trying to be brief cause I can talk all day. I feel I see one of the best Dr's for this. <br />
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He has done IV lidocane three times. Now waiting to get IV Ketaime. (spelling not sure). <br />
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When I was a child I was burned 3rd 45% of my body. The pain from RSD is worse.<br />
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I try not to let my kids know when I am hurting cause they worry all the time. <br />
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I wish they can cure this. I have tried All types of treatments. you would be surprised what you are willing to do to get rid of pain. <br />
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I hate the cold and I hate the fact I can go swimming with my kids. <br />
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The pain tires me out so much. All I can say is Keep moving.<br />
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Even though it hurts to move I do. I seen what happanes when you dont and it scares the **** out of me.<br />
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Take care and good luck.

I couldn't stop crying when I read your story. You really are amazing. I was diagnosed last year & have been researching RSD constantly. It changed my life. My relationship fell apart, I stopped going out, lost friends, couldn't work in the capacity I was used to. For an extrovert that is extremely hard not to be around people. I isolated myself. I have no family in the US apart from 2 friends that I consider family. I believe what doesn't break you makes you stronger. My foot doesn't move from the ankle down. I went through various doctors & my condition has been getting worse.I agree that it is hard to find a Dr that truly understands this disease. If the Dr's can't help me...then I have to make sure I am as informed as I can be.Recently I read about Gi Gong & am going to try the exercises as studies say it can alleviate the pain somewhat.I've tried the injections, every pain med known to man, physical therapy etc....& nothing has worked. I have been sorely disappointed by the medical field & am now putting my faith in the alternative healing world. Your story is inspiring as to how strong a person can truly be. I just hope I can embark on this 'new changed life' as strongly as you have.

Oh my goodness what a dreadful experience. I can't even imagine..

Interesting

You are so awesome Abby. Even weeks after you've gone, you continue to make so glad that you are here. :)

Thank you, Mr. Bookman. Double hip surgery is nothing to bat an eye at ... that's big stuff!<br />
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You have my best wishes as well.

I am speechless and can only send you caring and warm thoughts. I have been through double hip surgery myself, but your story makes me feel like I was on a holiday trip.<br />
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I hope your days hold you as tenderly as they can and send you warm thoughts.<br />
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All the best,<br />
E. Bookman

Thank you, Ammad.

salam alaikum warah matul lahi wabar katuhu!!<br />
May Peace and blessings of Allah swt be upon YOU..<br />
<br />
Im really very sorry I hurt your feeling.. because I was not aware of your problem..<br />
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after reading your story .. my tears are not stopping.. from my eyes..<br />
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My English is too poor to confess really ..<br />
<br />
but Sister ... in this life.. we all have to live with new hopes.. this is what i've learn in my 22 years of life..!!<br />
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i 've something for you .. and this is not critisism.. but an encouragement for better.. inshaAllah i wish it will work..<br />
<br />
follow the link... <br />
http://www.youtubeislam.com/view_video.php?viewkey=5c10e873bf3842afb46a<br />
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Sister take care of yourself....<br />
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and don't be SAD your lord is with you..<br />
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keep faith fi aman Allah<br />
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May Allah swt keep you save and protect you from evil of our society!!<br />
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May Allah swt bestow his mercy upon you and keep you calm.. and bless you with uncountalbe happiness.!!

Thank you, shmoofins. <br />
<br />
I never really thought of myself as 'strong' before all this or even in the eye of the storm but now that my vision is a bit clearer I can see that I am indeed strong. Perhaps it was this (the RSD) that pushed me to the strength? Kind of like, 'get strong or die!' I don't know but I'm thankful I possess what I do now.<br />
<br />
Thank you for your comments.

Wow, that is just horrible. Sounds like the healthcare system really let you down, the way they kept bouncing you around like that. That must be so frustrating! I know people with chronic pain have similar problems, no one believes how bad their pain is and docs think they're drug seekers. I had never heard of RSD before, it sounds awful. You must be very strong to have made it so far!

C'relly,<br />
<br />
I appreciate your curiosity, compassion and kind comments. It's been a heckuva ride ... a character building ride. But we all have our own character building ride in one way or another.<br />
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Thank you so much for your well wishes and kind thoughts ... I do my best but just like everyone else ... I'm prone to 'those' kind of days. hehe<br />
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Take care ... *hugs*

ooooh TF, I did NOT mean to cause you flashbacks so to speak. I never really thought my words or my story would cause anyone to react in such a way. I'd hoped for understanding and it seems I've achieved so much more. <br />
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I am sorry for the pain you've gone through in the past and for the pain you continue to suffer. While it makes us cranky and bleak in hope I think it definitely serves to build character ... either that or it destroys you. I choose the first option! It seems you do as well. We are survivors and there's something to be said for that!<br />
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TF, I am sending lots of hugs your way and wishes for wellness and healing.

Wow, Abby.... I had no idea. For the past few weeks since I`ve been here I`ve read many of your wonderful comments in other peoples stories, and I saw those letters come up in one of them- RSD. But I knew nothing of what it was at the time. I am amazed at your strength, and I applaud you for it! I don't really know what to say, except that I am most impressed with your wonderful attitude, the cheer you give to others, and now this, this horrible stuff that has happened to you. You are a much stronger woman than I had thought. I wish you so much wellness, and healing. I hope you find a way to experience less pain. And thank you for sharing your story with us. :)

It's such a shame your illness caused you to part but great that you are still close. I can only imagine the strain it would have on a relationship. *even bigger hugs* lol x

And, lil bro, I thank you. You are a breath of fresh air.

AW, I thank you for taking the time to read it and for your kind remarks.<br />
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My husband and I did divorce because ultimately we were making each other ill - literally. My medical condition was depressing him to which he would not admit he needed nor accept help. In his depression he lashed out in anger at me each time he opened his mouth. This caused me to get upset, stressed and grow depressed which flared up the pain. <br />
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The only way for him to be 'ok' without treatment (which he refused) was if we were divorced. My illness was very unfair to him and his state of mental health only served to worsen my physical and emotional health. It was a viscious circle.<br />
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He and I are extremely close friends to this day, however. <br />
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Ask and you shall receive! I don't mind questions at all and I don't find them nosey in the least.<br />
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I have a second story in this group that tells of the updates from the docs and my remaining options for treatment at this time.<br />
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I have faith that things will turn out ... one way or another, they will.<br />
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(oh and by the way ... Menses can be very painful and certainly nothing to bat a lash at for some women. Pain is subjective and is a matter of tolerance and perception.)<br />
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Thank you again, AW.<br />
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*hugs back*

WOW - Your story brought tears to my eyes! I don't know how you find the strength to go on every day, it's in situations like yours that you find out how strong you really are. I was sorry to read that you and your husband had divorced since, was this because he couldn't handle it? Sorry for being nosey! I cry when I get my monthly stomach cramps, your pain must be unbearable!!! I hope they find something that will ease your pain more and help you. *big huge hugs* Your a very inspriational person thank you so very much for sharing your story!xx

You're amazing constant, damn the universe that did this to you. What makes you all the more spectacular is your attitude, your ability to deal with this. We should all hope for that much strength so that we can make the most of our experience regardless of the *occasional* hell on earth. Keep on truck’n

i get what you're saying and i truly appreciate it. many times i fail to realize that i am one of the 15% who didn't commit suicide and one of the remaining 13% who are not confined to a wheelchair but can still walk. i guess this does say something for my 'will' ... thank you for reminding me. i tend to forget. no need whatsoever to apologize. we're both human ... i hope! lol

that basic need in itself is pretty amazing. *in extensionalism and quantum mechanic mode*. having to battle the question 'why?' every day, then with added 'why this too?' added on top. amazing sounded corny, i apologise. youre human.

piggygoff - sorry bout your near 'evacuation' ... i reckon a disclaimer wouldn't be a bad idea, eh? lol thank you for the compliment. i'm not sure how amazing i am really but everything i did, everything i went through ... i did it out of the basic human instinct to survive...

you should have a disclaimer on this to "not read while hungover". nearly vomited a few times. youre amazing.

El - i can understand the 'loss of mind' for lack of better words. due to nerve damage i how suffer from short term memory loss and due to the trauma of it as well as the 'loss' so to speak i suffer from both post tramatic stress disorder as well as major depressive disorder (somewhat like a war veteran after losing a limb - it's a normal thing per the docs but that doesn't make it any easier...) my memory used to be sharp and my mind so quick. nowadays it's as if my thoughts are like cold molasses, i rarely recall conversations, whether i paid bills or not, what i read, who called and what for, etc. if it's been less than 3.5-4 yrs ago (anything prior to accident minute i seem to be able to retain and recall with ease for the most part.) and level of importance makes no difference whatsoever! needless to say, i take LOTS of notes ... lol ... and the manic part ... well ... prior to the accident i'd been told by a therapist that i was borderline manic depressive. so you can imagine what it's done since the accident. i feel for you. it's quite a grieving process which makes matters worse. i have to say thank you for the compliment but you MUST know that you too are a courageous and brave person. if you didn't know, you do now!

It does seem sometimes that life hurts us where we are most weak. You describe being physically active and loving sports - and this is right where you got stung, in your ability to be physically active. For me it was the opposite. I was always the shy, reclusive intellectual, living in my mind - my mind was the one, safe reliable place on earth. Then, Manic Depression took that away from me - my mind became my worst enemy. It was horrifying - as though my best and only friend had deserted me. You are a courageous person, more power to you.

Your story and strength is inspiring.

i spose we've all been through some kind of medical hell. it seems, these days, that's what they're specialty is - giving people a hell of a time! i'm sorry for your experience too. i bet it made you stronger though, eh? i'm certainly much stronger than i once was! and it's not like i was a weenie then either. i've still got a LOT more to go through. i recently found out from the RSD doc that there is new technology available and he wants me to go through 39 more of those sympathetic blocks (big needle/probe in the spine) and try a new dorsal column stimulator after all that. i'm up for whatever if there's any chance whatsoever it will be helpful. i'll do anything for relief - short of buying emu oil and snake venom. but i might end up trying that too if i don't find relief soon! lol

my god I thought I'd been through a lot medically but geez...you are a strong woman for having endured such things