Reflex Sympathetic Dystrophy
My name is Elaine and I suffer from Reflex Sympathetic Dystrophy(RSD). I have had it for almost 20 years now, and there is no cure.
I was a paramedic, and I was working when the accident occurred. I was taking a 200lb patient out of the ambulance, when the trigger mechanism on the stretcher malfunctioned, causing the stretcher to collapse, and it hit just above my patella (kneecap) and kept dropping.
My job was to get my patient into the hospital and into the waiting ER, so I did that, then I assessed my knee. I called in to my dispatch, and was instructed to go to the doctor. Once there, I had a basic evaluation, but no x-rays, and was told I would need to take a few days off, and then start physical therapy once the swelling was gone, and I should be able to return to work.
Well a week later, it was still swollen, and I was unable to bear any weight at all... so I was sent for x rays, and an MRI. The doctor came into the room, and explained that my patella had moved medially and laterally down to just above my ankle, and I would need surgery immediately. He also explained that I had a partial rupture of the quadriceps, a torn fascia, a torn meniscus, and torn patella tendon.
I was in surgery later that evening. I woke up from the operation, and felt sore, but nothing horrible. They gave me pain meds, and the pain pretty much went away. I was discharged a few days later, and told I had a slight infection, I was given antibiotics and pain meds.
About 8 days after the surgery, I felt a pulling pressure, so I called the doctor, and he was so concerned that he came to my house to check on me. He brought a cast cutter, and split the cast... the patella had fallen again, and it looked like the infection had worsened.
I went to the hospital, and had surgery again. They found that the infection had eaten through the repaired quadriceps causing a full rupture, and they needed to control the infection before trying to repair the knee. I was put on stronger antibiotics and scheduled for surgery in 7 weeks.
I went in for the surgery, but they discovered I was pregnant, the antibiotics I was prescribed, had counteracted the birth control pill, and now I had to figure out had they harmed the baby. We were very fortunate, and my daughter was born healthy.
I went through the pregnancy on crutches, which was challenging. My daughter was a week old, and I was being taken into surgery. The repair of the knee went well, or so we thought... but I had developed very bad adhesions, and my leg wouldn't bend.
I was immediately scheduled for a lateral release, where they remove the adhesions surgically. That seemed to go well, and I was put into a CPM machine (Constant Passive Motion), which was a torture device, but it was necessary for my leg. All of this was pretty painful, but the meds they gave me were working fine.
My doctor went away on vacation, and while he was gone, a hole started forming along the incision line. I called the doctor covering for him, and was told to use sterile q-tips and betadyne to clean the hole... I had to swab thoroughly down into the hole. It didn't hurt so much as it was awful to see, and the smell was foul.
I went on for about 4 days like this. My visiting nurse came to the house, and I was hallucinating and had 8 sterile q tips jammed into the hole, a fever of 105, and an infection that had gone into my blood stream. I was taken by ambulance to the New England Baptist Hospital, and stabilized and then sent into surgery.
I had a septic Staph infection, and might lose the leg. They were never able to clearly explain this to me, as I was pretty out of it, the infection was bad, and mentally I wasn't able to process what was happening. I spent 2 weeks in the hospital and had 5 operations. I watched as the tubes carrying sterile water through my leg to flush out any infection, and saw chunks of my body being washed out. To say it was horrific is an understatement.
I was 25 years old, and it seemed like maybe my career was over, and I had 3 young children, and I just could not fathom that my leg was really messed up. I still felt the doctors would make this mess better. I don't remember much of that time in the hospital, but I was discharged and sent home with a porta cath in my arm so that I could get the intravenous antibiotics all through the summer.
The infection was finally under control, but I was told I had developed septic arthritis, I wasn't worried, as things seemed to be on the upswing, and they assured me that there were meds to treat it.
I was scheduled for another surgery, but at Massachusetts General Hospital this time. They went in and cleaned up the knee, removed adhesions, and assessed what would need to be done during the BIG surgery, that would finally, once and for all repair my knee!!!
I remember being excited to have the whole thing over with. I woke up after that surgery, and knew immediately that something was terribly wrong. I pressed the call button and asked the nurse for some pain meds, and she explained that I had been given some meds a few minutes before I woke up, and they should start working.
The pain meds never worked from that day on. I kept telling the nurses, and the doctors that something was wrong, that my leg was on fire, and it felt like white hot ice picks were being rammed into my kneecap, and the fire was all over.
I realized very early on that the more agitated I became, the throb and burn would become worse... I tried to remain very calm always... nothing to get my blood pumping. I was told by the doctors that I was just having post surgical pain, and that it was normal, given all the leg had been through.
I accepted their explanation, and was discharged to home, with the plan of returning in 3 weeks. That is when the major reconstruction of my knee would happen. The weeks passed for me in a blur of pain, and pain meds. My children stayed away from me, I think they were scared, I was constantly crying or in a catatonic state, and I was definitely not being a good mother as I was so consumed by this pain.
I went in for the next surgery, and when I woke up, I wished for death. I had never felt anything like this, and I started complaining, I was very mad. What was wrong? I wanted answers, and I wanted some RELIEF!!! I was hooked up to a machine that I could dose myself with the squeeze of a button... only the pain meds were not working.
I was starting to get very angry, and my frustration was apparent to my nurses and doctors. I had 2 more surgeries in that hospital stay, and with every surgery, the pain increased, and it seemed as if my doctors were not listening. I was discharged and sent home with pain meds. I called many times a day explaining that the meds were not working, and went through different types of painkillers to no avail. And my doctors had started looking at me strangely... I could feel their disbelief that the meds were not working.
I never realized at that time, that they were starting to think I was an opiate seeker, or that this was in my head. They wanted me to go see a therapist, and they explained that I may be experiencing some emotional trauma that might be manifesting itself into making me believe I was in pain. I went to a therapist, and let me just say, that the pain didn't get any better, it wasn't me doing this to me.
At this point, my visiting nurse was starting to get frustrated with the doctors and what they were saying, so she made an appointment for me with Dr. Gertler, at MGH. I arrived for the appointment, and they started doing tests, and asking a lot of questions. They wanted to know how long my leg had been this mottled purple color and they wanted to know how long I had been having temperature issues with my leg... the knee was very hot to the touch, but the rest of the leg was cold to the touch, and my toenails were always blue tinged.
They were surprised to hear how many surgeries I had had, and also that the operations continued while I was in such pain. I explained to him that I had some more surgeries scheduled, and that my leg was only half finished. I spent the entire day at the hospital undergoing tests, psych evaluations, and answering questions over and over again. I started feeling like I was a criminal, but the doctor explained that they just needed to make sure they had all the right answers.
I went home, and was scheduled to see him in another week, so I could get some answers. My visiting nurse and I arrived at his office early for my appointment. He came into the exam room, and explained that he had a diagnosis, and that I had several things going on all at once.
He told me I had RSD, and simple nerve entrapment, and they were both being complicated by the fact that my knee was not orthopaedically sound. I was told what RSD was, and what nerve entrapment was, and that there were no cures, just treatment.
I was ecstatic that he had found something wrong, and I could tell my other docs that this was a real condition, and I wasn't a pill seeker, or a liar... that was how they made me feel. I was referred to the MGH Pain Treatment Center, and immediately put on many types of meds... Gabapentin, Neurontin, Quinine Sulphate, Nortryptalene, Xanax, Valium, Tegretol, Morphine Sulfate Immediate Release, Morphine Sulfate Continuous Relief, Percocet, and a host of others I can't remember.
The doctors at the pain center were amazing, so caring, so understanding, and it was so clear they wanted to help... it was a far cry from what I was used to. I almost didn't want to complain, but even with all the meds, I was just doped up, but still in agony, so they started the Lumbar Sympathetic Blocks, the Phenol Blocks(phenol is a poison that is in D con, the stuff to kill rats), Walking Epidurals, Nerve Blocker injections, and of course the pills.
I would get minimal relief, and I also needed to have surgery again, as my leg was becoming more and more unstable. I was told that RSD gets worse with more trauma, but I had no choice. I had 6 more surgeries in that time, and my pain consumed me, and I wanted to die, prayed to die. They had to graft the biceps femoris from the back of my leg, and they rebuilt it to function as the quadriceps, in the front of the leg... suffice it to say my leg looked like it had been bitten and chewed on by a shark.
So I had had about 25 surgeries by this time, I had RSD, my leg was a mess, and it was not at all stable. Then the docs recommended I have a Morphine Pump and Spinal Cord Stimulator implanted in my spine. They did that surgery, but they also punctured holes in the Dura, and caused spinal fluid to leak... I thought my head was going to explode from the pain... so I was rushed back to the hospital, and they did blood patches to stop the fluid from leaking anymore, and took out the test stimulator.
When I recovered from that, I was told I had another option, and that it was showing real promise in helping patients with RSD The procedure was called a Retro Peritineal Sympathectomy, and that is where they cut all the nerves in your spine that lead to the leg, thus canceling out the route of pain. I could undertand this, and I said yes... I was desperate. I was on so many pills, I was unable to function without them, that I was willing to try anything. So I went in for the surgery, and woke up after it was over, and felt some relief. I was told that it would get better and better... it didn't... I was one of the 17 percent of people that have the surgery and the nerves regenerate and the pain is even worse. I had known about that risk, but it had seemed so small at the time.
I was discharged on even higher dosages of opiates. I don't remember a lot about those years, but my husband passed away unexpectedly, I had several more surgeries called z plasty's (as my incision would not stay closed and I needed exta skin to keep it close), my children were growing up, and I was missing life. After my husband died, I was alone, but I did have my pills... they were always there, and even if they didn't help the physical pain, they sure did make me numb. I was such a mess I couldn't even mourn my loss.
I went on having walking epidurals, lumbar blocks, and whatever else they said I needed. I never questioned them, as by this time, I was alive, but not living. I had withdrawn from my life, and I had no will to live. I only knew the time because I had to for my meds, I went to my childrens' school, and would nod out, I ate nothing, and I was driving a car. I once nodded out behind the wheel, and my 10 year old son had to grab the wheel and get us off the road.
When I told my doctors all of this, they told me that this would be the rest of my life, that I would always be on opiates. I started taking more in the hopes that I might not wake up... opiates can do that, they help you to convince yourself that things that normally don't make sense, suddenly make sense. And it seemed like a great idea to go to bed and never wake up. My poor children would have been the ones that found me. I also started getting blood clots that would end up in my lungs, so I have a filter implanted into my abdomen to catch them, before they make it to my lungs.
I really felt death was my way out. Only I always woke up.
One day, a good friend asked had I ever tried marijuana, and I had of course, but that was back in high school. So he lit up a joint, and I tried... the change was immediate. I can only explain it as a softening of my pain... the icy hot stabbing pain was calmer... still there, but I actually was experiencing relief, and that was something that had eluded me for years. I want to say that marijuana DID NOT take away all of the pain, but it made it bearable. I immediately stopped taking the opiates, and because I had been in a fog for so long, didn't even realize that the flu I had, was actually withdrawal.
I didn't tell my doctors about the marijuana or that I had stopped taking the pills. I was waking up... I had been asleep for a long time, and although the withdrawal was brutal, I needed to experience it that way, so that I would never forget what the pills did to me and never want to use opiates again. I told my doctors at the pain center I had stopped taking the meds they had prescribed for me, they wanted me to start taking them again, explained that I could have had serious complications from the withdrawal, and never once HEARD what I had been trying to tell them all those years... that opiates and other types of medications DID NOT WORK for me.
I was finally free of the opiates, and all the other meds... it took a year for me to start feeling like myself again, to feel joy, or sadness. I mourned the loss of my husband, as I had started feeling emotions again. I luckily enough had always been honest with my children, and I explained to them that I had become a medically supervised drug addict, but that I was getting better. I explained that a plant called cannabis was making it so that I no longer had to take any pills, and I was able to be somewhat comfortable. The children just wanted Mommy to be ok, so whatever was working for me, was fine with them. They will not take any pills to this day, as they have horrible memories of what the meds did to me.
I was upset with my doctors for putting me through everything that I went through, and then telling me that it would never get any better. I was real angry. I started to educate myself, and I learned that they are never taught that marijuana can help, so they would never think to tell the patient to try it. They are taught that opiate intervention is a good and reliable way to treat pain..and it is true in some cases. For me and my nerve pain opiates never worked, but the doctors didn't listen. I never wanted more pills, I never wanted any of this. My leg is not structurally sound, and sometimes I need my crutches, but I am opiate free, and I live a very active life now.
I went through 10 years of torturous agony, wanted to die, but I survived. The last 10 years I have only used marijuana to treat my pain. I can say that for me, marijuana has made my pain bearable, and is the reason I am here and present and in the moment. It never completely makes the pain go away, but when your pain is at a level 10, just to bring it to a level 6 or 7 is a Godsend. I only wish I had known sooner, there are so many years that I lost. I live with pain every day, and have had to accept that this is what it is, and I medicate with cannabis and am ok. I have good days and bad, sometimes I have holes that will form along the scar; there is always swelling, and temperature changes... but I am so much better off now, than I was then.
Nobody ever once mentioned cannabis as a way to treat this pain, until my friend suggested I try it, and he is not a medical doctor. I never had the option, and legally speaking, I still don't. I find it so unethical and wrong, that patients in pain, are not given a safer alternative than the opiates. Until our government allows that to happen, we will continue to have many medically supervised drug addicts in this country. I know how lucky I am, and I count my blessings every day that I survived. In this land of the free, why are we not allowed to choose what medicine we want? That is a question that haunts me, when I think of the people out there, just like I was...
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