RSD/CRPS.... A Guide for Chronic Pain Sufferers

What is RSD/CRPS? RSD, also known as Reflex Sympathetic Dystrophy Syndrome is now known as and called CRPS, or Chronic Regional Pain Syndrome.It is a progressive disease of the autonomic nervous system. In plain English, it's unexplained chronic pain that is debilitating and severe in natureand causes it's sufferers to live with intense chronic pain, emotional and physical distress. The purpose of this guide is to educate others... whetheryour suffering from this condition, you are a friend or loved one suffering with this condition, or you would like more information to be better informed.My name is Jessica (Jacobs) Schickel and I have been living with RSD/CRPS for a little over two years now. It has ruined my marriage and friendships I have had because my husband and friends couldn't deal with the physical and emotional burdens it placed in my life and subsequently, theirs. Because of this, I feel it's important for others to understand what it is that people like myself live with and why it causes us to act the way we do. It's a permanent part of my life and lives of those who suffer from it and it affects anyone that's involved in our lives. What are the symptoms of RSD/CRPS?1) Constant chronic burning pain (includes allodynia - extreme sensitivity to touch, sound, and vibration) 2) Inflammation (this can affect the appearance of the skin, bruising, mottling, etc.) 3) Spasms-in blood vessels and muscles of the extremities 4) Insomnia/Emotional Disturbance (includes the major changes to the limbic system such as short-term memory problems, concentration difficulties, etc.)5) Movement disorders- difficulty in moving the affected body part6) Increased Tone- Muscle and skin brightness7) Increased reflexes- Muscle and skin tightness8) General weakness- increased fatigue, swelling, sores, rashes, and fever are all possible9) Skin color changes- skin may turn shiny, begee red and tight. May have a mottled appearance. Can also be blue-ish purple. Increased sweating with either increased temperature or decreased temperature.10) Nails/ Hair- On affected areas, the hair can grow more rapidly or not at all. Nails can begee brittle and cracked.11) Bone Changes --- Softening of the bones, Osteoarthritis, Osteoporosis, joint stiffness/tenderness.12) Sleep Patterns --- Insomnia is often seen, also disrupted sleep pattern. Some Medications help this.13) Miscellaneous --- Dizziness, Tinnitus, Agitation, Irritability, Visual disturbances such as blurriness, dry eyes and others. Also, sounds/vibrations even strong winds can exacerbate the pain as well.The most gemon symptoms are the first 4 listed above and the major signs doctors look for when diagnosing this disease. As you can see, it's quite a list and for the sufferers of this disease it can be quite an ordeal to endure on a day to day basis when there is little or no relief to be had.I was first diagnosed with RSD/CRPS after sustaining crushing injuries to both my feet. Because the injury is in litigation, I cannot go into more detail but let me tell you that I had no idea what was in store for me that day when it happened. I thought I simply would have to wear my casts for 4-6 weeks, do my physical therapy, take my pain meds, and I would heal just fine. Only it didn't happen that way. Instead of getting better, I slowly and progressively got worse. The pain was unbearable at times and I was confused as to why I didn't seem to be healing. After the appropriate healing time, I still had unexplained swelling, I was unable to walk without it hurting more than it should have, and I had unexplained contusions and discoloration. Approximately2 months after my initial injury, I saw my doctor for the umpteenth time. It was then I was told I had RSD/CRPS. The doctor never explained to me what exactly this condition was. He just said I had Reflex Sympathetic Dystrophy Syndrome. All's he did say was that I had symptoms and pain when I should have any by that point. To me, it sounded like he was saying it was all in my head. And I felt hurt and confused because I just knew it wasn't just in my head. I was living with it every second of every day-- why didn't he take me more seriously? He suggested I see a Pain Management doctor.Perhaps if he had taken the time to explain what RSD/CRPS was... and what it meant, it would have saved me a lot of time and trouble. As it was, he didn't and I was scared about what I was feeling. I felt like by suggesting I see a pain management doctor he was just pacifying me. After all, I had never heard of this condition and I never knew of anyone having to see a pain management doctor before. I guess I also thought that maybe it was their way of making money off of me by sending me to seek further treatments for something that was "all in my head." I just didn't get it.I went on to see the pain management doctor. After reading my charts and giving me a thorough examination, he confirmed the diagnosis of RSD/CRPS. I remember feeling appalled. Again, this condition was not explained to me and I felt as if he was only giving me a diagnosis to make me feel better. Only I didn't. He put me on a series of meds. I had a few visits with him and a spinal block done. Nothing was helping with the pain. Nothing. I tried all different kinds of meds and pain pills, all of which failed me and I seemed to be getting worse.I went to physical therapy. I went in there feeling moderate pain and left in severe pain. I felt hopeless. He then suggested I try a spinal cord stimulator (SCS) which is a tiny box that is implanted into your back. You then have a remote that you use to control your pain levels as needed. That scared the b-jesus out of me and sounded so invasive! I then decided to try another doctor after this pain management doctor prescribed me an overdose of meds that caused some major medical problems. I thought he was a quack looking to make money!So, on to the next doc. By this point several months have passed. I had been suffering from pain in my feet and also right knee pain. My right knee was also very swollen and I could not straighten it out fully. It hurt to walk. My first doc and physical therapist told me that I needed to exercise more, so I joined a gym and tried to do that. The most I ever did was walk on the treadmill and walk laps around the gym. That's all the exercise my feet and legs could tolerate at that time. I had geplained to my first doc and the pain management doc about the right knee many times but they only did x-rays which came back normal. When I saw the second doc my husband came with me cause I could barely walk. At my last trip to the gym I had made my right knee worse and that was my chief geplaint for the visit. For months I had been geplaining of it and the most that was ever done was x-rays which all came back normal. I knew something else was wrong and told the second doctor all of this along with the history from my initial crushing injuries of my feet. The second doctor looked over my records (I brought copies from the first doc with me) and examined me. He got very irate with me and said he didn't think anything was seriously wrong. He, too, mentioned RSD. I became furious! Why didn't anyone believe me? Can someone make that type of pain up? I began to cry and told him I wasn't there to waste anyone's time. I felt something was wrong and demanded an MRI of my knee and asked to to re x-ray my feet. He grudgingly geplied and I had the MRI and x-rays done about a week later. I was scheduled to follow up with him the following week and was told to bring my films with me. However, the day after my MRI was done his office called me in to see him right away. This time, I brought my mother-in-law because she's tough as nails and I did not have the emotional capacity to deal with a doctor who was downright rude and mean to me. She would protect me from him, lol.I wasn't in the examination room more than 5 minutes when the doc came in. He looked at me and said very nicely that he owed me a big apology. According to the MRI, my right knee had a gepletely torn ACL and would require surgery. He said he admitted that he didn't think anything was wrong and that I only suffered from RSD. The x-ray's of my feet came back normal which still confused me as to why they still hurt so much after it being several months from the time I was hurt. It made no sense. I had my knee surgery. It went well and I did my physical therapy like I was told to. After many more months my feet still hurt like hell. That second doc mentioned RSD, and never explained what it was. I'm not even sure he was all that familiar with what it was or how to treat it cause nothing was done. I became frustrated once again. By this point it was over a year since my initial injury. Because my feet never seemed to "heal" properly, I had numerous incidents with spraining my ankles, or falling down steps, or having my ankle just give out on me. I had no idea this was typical of RSD/CRPS sufferers as no one took the time to explain to me what it was or how it could be treated. Perhaps if that time was taken in the beginning it wouldn't have progressed to the degree it is now. A little over a year after my initial injury, my left ankle "gave out" on me yet again. I had horrible swelling and discoloration and the degree of pain was near unbearable. My mother in law suggested I see her ankle and foot doctor who was close to where I lived. She said he was the nicest and most patient-friendly doc she had ever dealt with. So, I went in to see him. He learned of my history, of all the docs, the meds, the pain management, etc. He did his own set of x-rays, looked over my records, and did his own examination. That first visit I was diagnosed with a severe sprain of my left ankle. I was put into an air cast and given crutches. That sprain, like the others, took forever to heal. Longer than normal. After a few visits I was told by him that I had RSD/CRPS, and that he agreed with the other three diagnoses I had received in the past as having that condition. I remember thinking "Oh great. Here we go again. Another doctor who doesn't believe me!" Then my husband asked this doctor what RSD was and it was FINALLY explained to me in detail. I was floored! It wasn't all in my head! It was an actual condition! OMG!!! I am not crazy!Then it dawned on me. It's a condition and I would have it the rest of my life. It may get worse. I would live with this pain for gawd knows how long. I then became disheartened. But at least he took the time to tell me what it was I was suffering from and made sure I knew it wasn't just in my head. He told me we needed to be aggressive in trying to treat it so it didn't get worse. I went back to physical therapy. I was referred to a new pain management doctor. I was put on yet more meds. This doc was wonderful and even took the time to do more research on the condition. There were a few times he called me on the phone while he was on the geputer to give me suggestions on treatments. One of those options was Hyperbaric Oxygen Therapy. Basically, you lie in an oxygen chamber which was supposed to put more oxygen safely into your muscles to promote better circulation and nerve flow. However, my insurance would not cover the cost and I could not afford those treatments on my own. However, I have heard they were very effective for other RSD/CRPS patients who did try it.The pain management doc he referred me to also did a spinal block. He put me on more meds, including Lyrica, and anti-depressant, a sleeping pill, and 180 vicodin per month. By that time it was a year and a half since my initial injury and my RSD/CRPS slowly worsened. Because of the levels of pain I was in, I was unable to work or even live much of a life. I was miserable and developed insomnia and depression. I also suffered from major brain farts. I was very forgetful. Those are gemon side effects and are a direct result of having RSD/CRPS. But after seeing this pain management doc he tried to tell me I was getting better when I was getting worse. He said my "physical" symptoms seemed to have improved but the pain went from my feet into my legs and up to my hip/back area. He didn't believe me so I went to the foot and ankle doc and told him about it. He did some research and said that there was a CRPS clinic in downtown Cleveland that specialized in this. The docs that worked in this clinic ONLY dealt with RSD/CRPS and they were the best docs I could possibly ask for. I agreed to see them and let me tell you it was the best decision I could make. It was quite a drive from where I lived and a hassle to get to, but these docs REALLY know about this condition and how to treat it!It took over 4 weeks to get an appointment but when I got in they assigned me to a team of doctors including the doc that would head my team (Dr. Hayek) and a neurologist (Dr. Chalinsky) and a psychologist (I cannot remember his name!). I was given another spinal block which didn't work. I was put on new meds which didn't work. After seeing them for almost six months I was begeing discouraged again. I wasn't sleeping. I wasn't eating. My husband (who evidently couldn't handle everything) left me and was divorcing me. I was in this horrible, horrible pain day in and day out. I was depressed. Forgetful. I could hardly do anything to keep up with the kids or my house. I couldn't work. I lost 35 pounds in just 5 months! At one point I was in a wheel chair because I couldn't walk because the pain was so bad. But FINALLY the docs found a gebination of meds that actually brought my pain levels down! FINALLY!!!!I have noticed that even on those meds (which coincided with the summer/warmer weather) that now that it's getting cold again my pain seems to be getting worse. But at least I am not in a wheelchair at the moment!I felt the need to explain my story because I am certain there are people out there who are in my shoes and perhaps they don't know what it is they are suffering from. Maybe they do and they still feel alone. Maybe there are people who read this that know someone that suffers from RSD/CRPS. Your not alone. Did you know that CRPS is ranked in the McGILL Pain Index and that CRPS is ranked as the most painful form of chronic pain that exists today and it ranked on the McGill Pain Index at a whopping 42!To understand just how bad the pain is, cancer pain is ranked at 24. Now do you have a better understanding of what it's sufferers have to endure? Why they develop depression and anxiety? Why they don't (or cannot) do many activities that many people take for granted? For me, I used to love concerts. Not anymore... as the music vibrations kill me! Just listening to music causes so much pain you wouldn't believe. Or sleeping. My feet hurt so bad I have to sleep with them draped off the side of the bed so nothing touched them. Wearing normal shoes? Almost impossible. I wear slippers most of the time. During the summer months when my pain levels were better, I was actually able to wear sandals and occasionally I was able to dance. But those moments are rare and now that the weather is colder it's now impossible. Things that so many people take for granted. Liked a shower. Yes-- that, too, can be quite painful. I much prefer to take a bath as it's much less painful. My days and what I do are solely dependent upon just how much pain I am in. It sucks but it's something I have to live with the rest of my life. I'm in my early 30's and disabled. Taking care of my children is something I shouldn't have to worry about. But I do, because they now do more to help me than the other way around. I hope that by learning more about this condition you can gain a better understanding of what more 1.5 to 3 millions sufferers of this disease live with in a day to day basis. Some have it better, others worse. Some don't even know they have it and think the pain is all in their heads. But it's not. And it's about time that people learned what this condition is and how it affects so many people. It's been a real rough road for me both emotionally and physically but if I can help just one person in any way then it will put a smile on my face. There are excellent resources. Please visit rsdhope dot org, as it's one of the best websites I have been to.Please feel free to contact me if you have any questions or if you just want someone to talk or vent to. I wish I had people like that in my life that understood first hand what I am going through. It would help.And remember...... IT'S NOT ALL IN YOUR HEAD! IT'S REAL AND IT'S OUT THERE!Would you like to learn more about RSD/CRPS or perhaps talk to others who may suffer from it?I have created a brand new website that offers more detailed information as well as a message board that acts as an online support group for pain sufferers worldwide. It may be new but oneday it will be (hopefully) a often used asset for pain sufferers worldwide.Visit www(dot)CRPSSupport(dot)org
I have also written other informative guides to help those who suffer from chronic pain so be sure to check out my other guides as well. Please vote YES below if this guide was at all helpful. Your vote means alot to me as any "YES" votes increase my rankings here on okay.
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