Want to talk with others. Have you found relief from CRPS?

Posted by mam14 @mam14, Feb 4, 2019

I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.

Could CRPS be related to Stiff Man(Person) Syndrome? Never heard of either until recently and my doctor said both could be possibilities re: my pain.

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Sorry to hear about your health issues with CRPS, I too was diagnosed about 4 month ago. I had a TKR and developed CRPS in the knee area. I have had granular shots in the knee and use a cream and patch when nerves are active. This has helped very much. The concern for me is that I am starting to feel nerve pain on the opposite knee and breast. Did yours start in one place and spread?

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@lizzyisme

Sorry to hear about your health issues with CRPS, I too was diagnosed about 4 month ago. I had a TKR and developed CRPS in the knee area. I have had granular shots in the knee and use a cream and patch when nerves are active. This has helped very much. The concern for me is that I am starting to feel nerve pain on the opposite knee and breast. Did yours start in one place and spread?

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Unfortunately yes. It started in my ankle, nerve blockers worked on that. But then it jumped to my arm same side as ankle, then moved to my right arm so keep up with what works for you and see your doctor if your skin changes color. That's one of the big criteria for crps. It looks blueish and purple, I call it my mermaid skin..lol. you need to ask your doctor about it. Kit talk anytime you want. My name is Renee.

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@lizzyisme

Sorry to hear about your health issues with CRPS, I too was diagnosed about 4 month ago. I had a TKR and developed CRPS in the knee area. I have had granular shots in the knee and use a cream and patch when nerves are active. This has helped very much. The concern for me is that I am starting to feel nerve pain on the opposite knee and breast. Did yours start in one place and spread?

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Mine started in my right foot and then after five months, spread up my right side and across to my left foot. I can feel it most everywhere now.

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I was afraid that pains I was occasionally feeling in other body parts was a result of CPRS spreading. Oh dear😧

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@ardsu

Could CRPS be related to Stiff Man(Person) Syndrome? Never heard of either until recently and my doctor said both could be possibilities re: my pain.

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I just had an EMG and had contractures from the needles. I asked the doctor if he could tell me what I had. He told me Stiffman's Syndrome. This has been going on for 20 years. I also have been dx with CRPS 7 years ago. Today I had a pain management appt. He did a radio frequency ablation in my neck on my right side – the side that always starts problems. A weird thing happened. I was unable to stand. I couldn't get out of the chair. Every 15 minutes I tried. After an hour and a half I was pulled to my feet and stood but my feet were like cement and I couldn't walk. Finally after another 45 minutes I was able to be pulled up and took three steps. Yahoo! I don't know what is what but I am trying to get an appointment with that neurologist who did the EMG.

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Oh my, I hope this can be figured out and was an isolated incident.

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@barbbie

I just had an EMG and had contractures from the needles. I asked the doctor if he could tell me what I had. He told me Stiffman's Syndrome. This has been going on for 20 years. I also have been dx with CRPS 7 years ago. Today I had a pain management appt. He did a radio frequency ablation in my neck on my right side – the side that always starts problems. A weird thing happened. I was unable to stand. I couldn't get out of the chair. Every 15 minutes I tried. After an hour and a half I was pulled to my feet and stood but my feet were like cement and I couldn't walk. Finally after another 45 minutes I was able to be pulled up and took three steps. Yahoo! I don't know what is what but I am trying to get an appointment with that neurologist who did the EMG.

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Oh my, now I'm leery of pursuing Stiffman Syndrome. Thank you so much for your post; I would welcome hearing more of what you are going through. I'm new to this site and not sure how this works … would like to continue hearing your experiences.

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@ardsu

Oh my, now I'm leery of pursuing Stiffman Syndrome. Thank you so much for your post; I would welcome hearing more of what you are going through. I'm new to this site and not sure how this works … would like to continue hearing your experiences.

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@ardsu

I started with contractures during a massage. It was only in my right shoulder, arm, and hand. Frequently I would end up with a claw hand. That occurred about six months after a fall and a head and neck injury. About 16 months later, I fell on ice walking to my car at work. I have no memory of the fall. One of my students saw me and ran to get the principal. We figure it took him about 5 minutes and me that same time to come to in a very cold icy place. I had a concussion, post concussion syndrome, and fractured the radial head in my right arm. I was out of work for 4 weeks. I was healed of my headaches when a visiting preacher came to our church. About 5 or 6 months later the contractures went body wide. My diaphragm will contract and these weird noises come out of my mouth. The muscle pain is incredible. Sometimes I get curled up. Even my toes get involved. They have lasted minutes to hours. They are exhausting. I left my teaching job on disability. I don know if Stiffmans can come from injuries. I also started myoclonic jerks. Thank goodness it usually is at bedtime. The whole body jerks. One time I counted 40 in an hour. Again exhausting. I take klonopin for that. What do you experience?

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@sandytoes14

@lioness Well I took the plunge and ordered the Fibro Malic. I looked at the ingredients and knew there was nothing listed that was going to be a 'flash in the pan snake oil' type of "cure". Magnesium controls so much in your body. Anyhow, I'm happy to say Fibro Malic works for me! Since taking it I have noticed significantly less muscle pain and most notably, less muscle spasms. My doctor has prescribed Baclofen 10 mg 2x day as needed. I have not had to take it as often! Along with fibromyalgia, I have nerve and chronic neck pain. When I saw my doctor last, we decided it was time for me to have RFA- Radio Frequency Ablation- on my lumbar spine.The last time I had it done was nearly 8 years ago.
Since having gastric bypass done in 2007 I know I absorb nutrients significantly lower. I've been faithful taking my vitamin/mineral supplements. Trazodone has been prescribed for me for sleep, however I find that the Oxycodone I need for pain interferes with it. I get weird dreams and therefor do not get a restful nights sleep @lioness .I see that you take Melatonin. Will you share with me how to get started taking it?

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Melatonin comes and goes quickly, so my doctor recommended remfresh, a timed release melatonin, and it has made a big difference for me

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Has anyone had success doing exercise? If so, what kind have you done that has been helpful?

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@barbbie

Has anyone had success doing exercise? If so, what kind have you done that has been helpful?

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Hi, @barbbie – I've moved your post here to this discussion where you've participated previously, as many members here who've been discussing CRPS might have some input on your question of whether doing exercise has been helpful. Just click VIEW & REPLY in your email notification to see your post and the many others in this conversation.

Have you found that exercise, or a particular kind of exercise, has been helpful to you, @barbbie?

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