What is Reflex Sympathetic Dystrophy (RSD) Syndrome (AKA CRPS)?
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There are 100's of websites that list the symptoms of RSD (aka CRPS). For the most part, they all mention the same Basic list. There are also some variations on what happens during, and after the diagnosis. From what I've been able to find, it also depends on the location of the injury, and the type of injury. There are a lot of things that can factor into what YOUR RSD/CRPS may be putting you through!!! No Matter what....Don't ever give up hope. Don't feel like you are making it up, or because what you are going through is not listed on somebody's website. AGAIN....THIS IS NOT A MEDICAL SITE. This is a personal page, that depicts what I have personally gone through, and what has HELPED ME while battling my RSD, its also a place to find more information about St. Jude's Neurto Stimulators. I was constantly told, "There is no treatment that can help you". But, instead of giving up, I continued to fight, and try get more than just 3 opinions! When I moved out of Spokane, I honestly thought that I would be on Nerve medications for the rest of my life, and that there really wasn't any hope. Boy was I wrong!!! The move didn't reduce my chances of finding help, it actually increased them!!! During this time, Washington State Changed some of the Medical Laws, so I could no longer just be seen by my primary doctor. I had to be referred to a specialist.
Here are a list of symptoms that patients may suffer from:
If you would like to add your feedback, comments or experiences to these symptoms, or any not listed here, or things that have helped you deal with your condition, please fill out the form below, and I would be happy to Post your experiences as well!
Here are a list of symptoms that patients may suffer from:
- "burning" pain - The worst part about the burning pain, is that nothing makes it stop. It constantly feels like somebody poured gasoline on your affected limb, and lit you on fire and there is nothing on earth that can put the flames out.
~ Tanda Pederson says "The worst Trigger for me, was air blowing against my skin. Walking is extremely painful for any RSD patient, no matter which limb is affected. Walking causes 'wind' to blow against you...I used to have to have my arm covered even in the summer so that the wind wasn't setting off a wave of extreme pain because we were outside." - Skin sensitivity - This is an understatement. The skin sensitivity can be tied into each and every Symptom that will be listed here. The sensitivity can be different for each and every patient. They can include (but are not limited to: hot, cold, wind, water, clothes, materials, movement, touch, textures, ect..) I'm sure there are 100's more things that can be included in the examples above, there are just to many to list.
~ Tanda Pederson says "My sensitivity really depends on the situation, the current pain level I'm experiencing, which part of my limb is the most sensitive that particular day, the weather, and my stress level. I recently noticing the environment (work, home, bed, driving, ect..) also has an effect on the above." - Changes in skin temperature (i.e., affected area being warmer or cooler compared to other areas of the body) - This can be different for every patient as well. Some patients experience a higher temperature in the affected limb, while others experience a colder temperature.
~ Tanda Pederson says "My skin temperature actually changed at times. Originally, to the touch it was much cooler than the rest of my body. However, in times of extreme flare ups, my arm can become much warmer than other parts of my body. This is usually when it is swelling, or I am also having the color changes and have a lighter overall color to my arm, then get red & purple blotchy patches." - Changes in skin color: (e.g., blotchy, purple, pale or red) - As stated above, these two usually come hand in hand. They may appear at the same time, or the red/blotchy patches may appear after the temperature change, and sometimes, this symptom may appear first. Each case of RSD is different.
- Changes in skin texture (e.g., shiny and thin, sometimes excessively sweaty) - This again depends on the situation, and what stage of the illness you are in. It can also change throughout the stages of the illness. At times your affected limb will also appear shiny. This is another symptom of the illness.
~ Tanda Pederson says "My skin texture did change throughout the stages of my treatment. In the beginning, my hand (mainly pinky finger, ring finger, and the right side of my right hand was most intense) was red with purple blotches, and sometimes looked more purple with red blotches. It was usually shinier than the rest of my arm. However, once it started moving up and effecting more of my arm and elbow, the shininess mainly stayed on my hand, while the red/blotchy color changes spread up the affected limb." - Changes in nail and hair growth patterns - Nail growth can decrease or increase. Nails can also become brittle and break easily. The hair can become more coarse, and become a darker color.
~ Tanda Pederson says "The most I was affected by this part, was my nails really did grow much faster, and it was much more painful to cut my finger nails. It eventually got to the point I needed help doing it because I couldn't handle the pain and focus enough to not hurt myself further by breaking my nail. Also, the hair on my arm did get much darker and way more coarse! It was almost like leg hair on a guy. I figured out a way to trim it so it wasn't so bad. Not only was it ugly, it was intensifying the pain and sensitivity when walking, as the hair would move. I would wait for a day that I was doing physically better, and I wasn't at a mental breaking point, and then I would take advantage of it and shave (if I could) or at least trim it if i couldn't handle anything touching my skin." - Swelling and stiffness in affected joint - This is one of the symptoms that can have the biggest "Make Or Brake" your treatment and recovery. There are times it is beyond painful to move the affected limb/joint, however, if you can't fight that battle and continue making yourself fight that battle and continue moving your limb. the more you move it, the better it will feel eventually! Sounds stupid...but by keeping it moving, it helps keep your mobility up as well as prevents muscle atrophy. By doing those two things, it will actually REDUCE your pain in the long run.
~ Tanda Pederson says "This was one of the things my physical therapist stressed to me. The days that I went in there, and she could tell that I was being even more protective than normal, were the days she pushed me the most. She told me over and over again "If you stop using your arm/hand, you lost this fight, and you will never be able to beat it. But...if you are determined, you keep fighting the pain and making yourself move it...you will do better than everybody else that looses that fight. That was honestly the BEST thing she could have done for me. Even when Kari knew I wanted to give up, she would push me harder, and she would also let me vent, and tell her WHY I wanted to give up. That's what helped me get through those first years when the doctors didn't know what was wrong." - Motor disability, with decreased ability to move affected body part - There will be times when it hurts beyond any words can explain to move the affected limb. There are times that you physically will not be able to move it. Get Physical Therapy. And be prepare to face your pain head on. However, they will help you get your motility back. They can help with things liking opening door knobs. Turning Bike Pedals with your arms. Cause believe it or not, you will lose muscles you didn't even know you used. Physical Therapy can help with these types of issues.
~ Tanda Pederson says "The thing that helped me most was Physical therapy. They are able to do things like Parrifin Wax treatments for my hand, then covered it with a plastic bag to keep the heat in, and when I could tolerate the weight, they included the Rice Bags that you warm up in the micro wave and put my hand (covered in wax, wrapped with a plastic bag) between two of those warmed up rice bags. I sat like that for 15 minutes. My Therapist would then do as much of a massage as I could tolerate, the we would begin the exercises. It was much easier after being warmed and massaged for my muscles to allow me to push them. I learned so much there, that I still do a lot of it at home to this day. And that was 6 years ago that I stopped going."
If you would like to add your feedback, comments or experiences to these symptoms, or any not listed here, or things that have helped you deal with your condition, please fill out the form below, and I would be happy to Post your experiences as well!