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DiscussionCRPS - anyone suffering with complex regional pain syndrome
Chronic Pain | Last Active: Oct 25 3:58am | Replies (366)Comment receiving replies
Replies to "In 2000, I was diagnosed with fibromyalgia, which is body wide pain along with many additional..."
fibromyalgia is totally different then CRPS or the original name Reflex Sympathetic Dystrophy. It dates back to the Civil War (the name back then was Causalgia) when soldiers who lost limbs would get this condition which is listed as the #1 most painful condition on the McGill Pain Scale. There are two types. I have had the disorder since 2017 during foot surgery when 3 nerves were severed causing RSD type 2 (documented nerve damage) type 1 does not need actual damaged nerves. They can confirm the condition by doing a EMG study sending electrical impulses to the muscles to see how they react. In a short time mine is whole body. My one leg atrophied and is smaller than my other leg. I have been through skin rashes like shingles, gastroparesis, muscle spasms, the list goes on and on. During the surgery and the nerves being severed what it does is turn on your sympathetic nervous systems "fight or flight" response. I feel pain twice as bad as the actual injury. My pain sensors are permanently turned on. When they ask at the doctors to rate my pain I will not answer that. A 10 on the average pain scale is a good number for me, as it's the worst pain for someone else. my worst pain would be rated a 20....the earlier it's treated the better your outcome is for it not to spread to other body parts. It usually comes from an injury or some sort of trauma to one of your limbs. That's the most common cause. There is no cure. You can go in to remission but it is rare to just go away. Mine was in remission with no muscle spasms for about a year. In December of 23 I had an accident where I stumbled on a walkway that had uneven bricks and I slammed my face and head in to a heavy glass door then the cement ground. I was knocked out for over 30 minutes. I had a concussion and I hit the door with such force I broke my neck. Luckily it could have killed me or paralyzed me...I healed my neck by wearing a hard brace for three months. I have been left with Post Concussion Syndrome and lost my short term memory. My symptoms of the RSD have come back due to the additional trauma to my head. If anyone has CRPS with spasms especially in your feet you need to fight through it and force yourself to get up and walk. The weight of your body will take away the spasms pretty quickly. I get spasms now in my leg which are horribly painful. I find putting a heating pad on the area is very helpful. I take no pain medication due to stage 3 kidney disease so I just do the best I can when those spasms hit. For my stomach issues I actually was given a motion sickness drug that I put under my tongue the minute I feel those stomach spasms coming on...Night time is the worst ....I find Valium 10 mg. helps to take away the stress and anxiety of the pain. It's been a long 7 years but I manage to deal with it....God Bless you all for living with chronic pain. I was in therapy for awhile to try to handle such a life change and how it did not have to happen. I was okay and was in a good mental place. I did not need to have something else so horrific happen finding back where I started. But I can get thru this also. And if I can't ......well, I won't remember it. Feel free to contact me if you have any questions. I have become somewhat an expert since so many doctors have no idea what CRPS (RSD) is......they need to teach it in medical schools......
I also have fibromyalgia and in pain every day, sometimes severe. I haven't taken any drugs for it yet. My Dr prescribed 100mg gabapentin 3x a day but I haven't started it yet. Afraid of side effects I guess. She didn't say anything about increasing the dose down the road, and said I could take it "as needed" for pain, which conflicts with things I've read about the drug. Can you tell me what dose you started with and what dose finally helped with pain? Do you have to continually increase the dose as your body gets used to the drug? thanks.