Looking for other in the CRPS community to talk with
Posted , 6 users are following.
Hello All,
I have had CRPS for 15 years. And, although this is one of the most awful conditions, im still fihhting to love life to its fullest everyday. My current support system is amazing and I work to bless my community with love and kindness everyday. However, my condition fluctuates and I have felt a growing need to reach out to the community. I dont know if this is the right sight, but Im looking to grow friendships so we can all get through living with CRPS with a little more hope. If your need some support from a far. Reach out.
0 likes, 12 replies
brenda_savvy CaliElli
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CaliElli brenda_savvy
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brenda_savvy CaliElli
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gary44503 brenda_savvy
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Hi you all, I'm sorry your going through that. Doctors don't understand it. I guess I got lucky I was declared disabled because of my main condition where it so noticeable I couldn't be denied. I never used Facebook I guess I could try. I'm not very tech knowledgeable. Have a good day, Gary
sabrina51474 brenda_savvy
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This just in! Well, not really; there are journal articles going back to at least 2015 that suggest that when chronic pain conditions such as CRPS spread "full body" or nearly so, that not only is it autoimmune/inflammatory in terms of mechanism, but also a form of ENCEPHALITIS. Not kidding. What this means is, that you need to be evaluated by neurology specifically for the signs and symptoms of encephalitis. Some patients will actually pop with antibodies to NMDA receptors or other things of this nature, but some won't. Diagnosis can be done based on these antibody titers, but also on a sample of serum or CSF (your spinal fluid), with support from MRI/CT of the brain. Because this is so new, many neurologists haven't seen/heard about this. Take a look at the literature and support groups online. See if you don't recognize the signs and symptoms they are listing as significant for this type of encephalitis/encephalopathy, which can have acute, subacute or gradual onset, and can wax and wane; because CRPS has historically been known to cause or at least contribute to things like short-term memory lapses, angry outbursts, disturbances of sleep patterns, executive and word-retrieval problems as well as digestive and movement problems to name a few, doctors who see CRPS cases just accept that we may pop with these symptoms, but they have mostly fallen into the category of "nobody knows why it happens, but it does happen". Well, autoimmune encephalitis explains it.
This is why one professional can say you are totally disabled, and another can say you are fit for work; much of the time, there's nothing on the outside to suggest what is going wrong on the inside, where you are experiencing actual changes in your brain matter, in terms of connectivity and function. A few acutely ill people actually lapse into psychosis, seizures, or even coma; this gets the attention of healthcare professionals, you bet...but for those of us who are less acutely ill than this, and for months or years at a time, the diagnosis can go unidentified.
Hope this helps to identify a possible way forward.
I will have to have surgery to repair an aneurysm in my brain, but first, to reduce risk of acute exacerbation of brain swelling, I'm going to have to convince my doctors that I'm an undiagnosed case of autoimmune encephalitis, and that's why ketamine worked for me: It's an immune modulator as well as an anesthetic!
lisavila CaliElli
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Hello Cali,
Where do you live? I live in Northern California and I am part of a few Facebook support groups for CRPS patients. You may want to look that up around the area you live. It's a great way of developing friendships with people in your community that also suffer from CRPS. Plus, I learn a lot from my peers and often they know a lot more about the condition than most doctors do. I hope you find a support group in the area you live. All the best!
gary44503 CaliElli
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Hey everyone, I'm always looking for people to talk with. These emotional downs are almost too much for me to handle and definitely too much to handle with out someone. A long with my new sister Brenda we might get through this on a daily basis. I'm from a very small town and can barely leave the house so finding support here is impossible. My iPad and all you awesome people are my hope. Take care, Gary
CaliElli gary44503
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gary44503 CaliElli
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No win situation! I thought it would be a good idea to walk everyday as far as I could. Now more pain. I have two blisters on the bottom of my feet. Today I can't even stand. Really! OH well. On the good side I finally got my daughters boyfriend out of the house to look for a job,hurray . Trying real hard to look at the bright side.mtake care everyone, Gary
gary44503
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I just don't get it! Is it worse being poor and in pain evertday like me or being rich and famous like Anthony bourdain. I think about ending everything everyday but don't think I could I always think money maters but dose it really? I just don't know. Gary
brenda_savvy gary44503
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I think money maters but not to be rich just comfortable to pay the bills and not to worry all thr time. But most of us do. However being rich in love is key in my life.
giann CaliElli
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Hello
I have had CRPS since 2008 after botched surgery; it will be 10 yrs Nov 4th. I rented a place in September of 2015 and I had no idea but I was being slowly poisoned by Carbon Moxonide (almost died) and needless to say it further damage my nervous system, my heart (aortic stenosis) and tissue damage.......the CRPS is now widespread. I was fortunately enough to be approved for SSD but at the same time I am so bored not working. I was dealing with some cognitive issue, but they have improved, and my mind is active but the body won't cooperate. I miss working. I don't have a support system per se, so it is nice that you have reach out. I'm not upset about it, I have choose to avoid doctors at all cost, don't take medication, the side effects are horrible and my body doesn't like any type of stimulant. I do my best to eat whole food, I test and only take the nutrients/vitamins my body is lacking. I take the dog on short walks, several times per day, I get out of breath easy and walking can be chore but I make myself do it. I have a small herb garden, and flowers that I enjoy. I left my husband, he doesn't have an ounce of emotional intelligence....and the truth is I feel a lot better now that I live alone. I have a few good friends, my dog, and I attend church when I am up to it.