CRPD

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I have CRPS, since 2008, after a work related injury. It seems like none of the doctors I have seen either have no clue or just don't want to listen to what I'm telling them. I have CRPS in my right arm and have learned to coop with the serve Pain, but the constant dropping things, not being able to even wash my own hair sometimes is so absolutely frustrating. I told my doctor the other day that I had the same burning pain on the right side of my chest and with it breathing was so very hard like I had someone sitting on my chest, I was told it was sympathy painsad Like so many it seems like not a single doctor wants to listen to me. No one around me understands, my whole life has been turned upside over this and I have no one to turn too. Thank you all I just need to get this off my chest and hopefully be able to talk to someone who knows how I feel.

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  • Posted

    Dear Melissa, 

    I am truly empathetic to what you are going through on a daily basis.  I am curious, have you done a search for a pain management doctor who has worked with CRPS? 

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  • Posted

    I perfectly understand you.I saw numerous doctors claiming to be experts but really they just have a protocol to test and CRPS begs definition it is so wide in its influence.
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  • Posted

    Welcome to my world. I have that feeling that they do not understanding what you have been going through. I had the doct appoin today i keep telling them that i think i is getting my right food too. They keep giving you the sorry looks i dont need sympathy but someone to help me and they should be more helpfull because i believe noone will want to be ill i dont think someone want to pretend this is something you cant controll it. I do understand what you are going through and the system is leaving people down i have been everywhere even private still i had to go through nhs so no matter you do you still have to queu. I just lost my job as well so that was the cherry on top, great. When i hear you guys writing to me and i could feel you pain , and i hate why this happends no idea. Thank you
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    • Posted

      Sorry to hear you lost your job??. I haven't been able to work for 10 years, workers comp tried to send me through vocational rehabilitation but my arm couldn't handle the demand it was being put through. So many don't understand what we with CRPS deal with and go through on a daily basis. The burning constant pain is aweful but when you put on top the changes in your life it forces you to make the stress and depression it's something I wish everyday would just go away. I'm a mother and to have to look at my 7 year old daughter and tell her sorry Mommy can't do that kills me inside every time. The only true understanding we with CRPS get is from each other. I hope you are doing well and things get better for you.

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  • Posted

    Could the doctor have been saying sympathetic pain, as in pain caused by sympathetic nerves, not pain in sympathy to your arm. Perhaps your doctor did get it. And, thank goodness that it spread to your chest instead of up into your face, that is far worse. I know it's not much to make you feel better, but I always take solace in it could always be worse! But, seriously, is it possible that you misunderstood your doctor and he/she was trying to tell you that your chest pain was all part of the same syndrome that's in your arm, sympathetic? ( giving your doctor the benefit of the doubt here....)

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    • Posted

      Wish that was the case but I asked him and he said it was just sympathy pain. I thank God everyday it's not worse then what it could be, I keep myself going alot telling myself it could be worse so get up and get going, doesn't make it easier, but it is a motivation.

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    • Posted

       WhI'm believe that he called it "Sympathy Pain" most doctors have no Emotional Intelligence which is why most of them have a poor bedside manner.  Melissa at one time we called Complex Regional Pain Syndrome  "Reflex Sympathetic Dystrophy" and I prefer to continue using RSD. The Autonomic Nervous system has two branches 1. Sympathetic Branch and 2. Para-Sympathetic branch.   The Sympathetic branch is our "fight and/or flight" response. The sympathetic branch gets "stuck" much like a gear, this makes us physically and emotionally sensitive to "stimuli". Reflex means - excited in response to a stimulus applied to the periphery and transmitted to the brain or spinal cord, the sympathetic nerve fibers are stuck on "replay" and send pain signals to the brain and the pain can increase if stimuli increases which can increase inflammation and cause us to feel emotionally on overload. Smell, noise and/or touch or stubbing a toe can send us over the edge. The dystrophy results in defective nutrition, and muscular decline and weakness. You see when the Sympathetic branch of the nervous system is dominated we tend to eliminate nutrients before our bodies get a chance to metabolize them and utilize them, so we end up with a ton of uncomfortable symptoms including dental.  I found a way to start slowing my nervous system down and I am much better. Doctors and pills will only bring you down and eventually kill a person. 

       

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  • Posted

    Hi Melissa,

    I'm sorry to hear you've been getting the business over the newer symptoms in your chest...I've been not very active on the forum for the last weeks, dealing with a flare myself. Like your case, my CRPS is the result of a work injury; a knee sprain and subsequent surgery for torn cartilage resulted in full-body signs and symptoms. The recent flare resulted in trigeminal neuralgia. Here's the skinny about the U.S. healthcare system in general: Between physicians having very little time to see patients, due to the increasing demands on them for documentation/compliance issues related to insurance reimbursement, etc., our already fragmented system of care in this country is only getting worse. We seem to do OK when it comes to urgent/emergency care much of the time, but where the bottom really falls out is with chronic conditions. If you are not expected to recover, if there is not a test or procedure that can be done to fix you, the whole exercise can feel like you are just banging your head against the wall. I know allaroundanne is a physician; I am a registered nurse. I bet there are other healthcare professionals on this forum also. Know that we too have experienced confusion and additional stress sometimes related to our healthcare providers not always being entirely well informed about the state of the science when it comes to chronic pain states in general, and CRPS in particular. In the case of your physician it sounds like there may be a knowledge gap regarding the potential for spread of CRPS signs and symptoms from one body part to another via the central nervous system (brain and spinal cord)as a sort of hub of inflammatory messaging going from a site of injury to the CNS, and then back from the CNS to the site of injury, and also sometimes to who-knows-where else. It's like electrical lines getting crossed up, in that it affects near-by lines as well.

    I read compulsively, especially now that I'm legally disabled/can't work. What I have found is that the science around CRPS and similar conditions such as Fibromyalgia and post-traumatic neuropathy, etc., is changing so rapidly that it is more time-consuming than at any other time in the last hundred and fifty years to keep pace, despite the advent of the internet. Basically, you can think of it this way: CRPS isn't just a thing unto itself, it's on a continuum of pain conditions that have inflammatory, autoimmune, and central nervous system issues built in. This means that the traditional way it has been treated (pain management) is only the tip of the iceberg, which is why pain meds alone didn't do a very good job for many sufferers. And the fairly common experience of CRPS patients that weather changes, extra stress, and even loud noise or bright light for some can cause a symptom flare, left some healthcare professionals wondering out loud if it wasn't all in our heads.

    All I can do is share with you what I do and why: I take 4,000 mg. of vitamin C daily, because antioxidants support the normal function of the immune system. Immune response tends to be pretty wonky in CRPS; overactive in the early days, and often underactive as the years go on, making infections more likely and healing often delayed as a result. Ditto a good multivitamin.

    Extra magnesium, D3 and calcium, as CRPS patients for a variety of reasons metabolically and from being sedentary/indoor creatures typically run short on these nutrients. If you have muscle spasms or cramping, anxiety or depression these nutrients are key to your comfort as well.

    I drink 8 glasses of water a day, and restrict myself to one caffeinated beverage, because dehydration just makes pain, skin integrity, and digestive issues worse.

    My strategy regarding medications the last couple years has evolved as I have become better informed, but also as a result of the work comp insurance company basically refusing to cover my medical care and treatment for much of the last 3 years (claim still in progress...sigh)that means I needed to find stuff that was effective, didn't necessarily require a prescription, and was dirt-cheap:

    Histamine blockers, such as Benadryl, Claritin, and Pepcid: These were game-changers for me in that Benadryl helped me get to sleep/stay asleep, and non-drowsy Claritin and Pepcid helped with keeping down inflammatory response and peripheral pain just generally. I didn't even know I was having trouble breathing at night thru my nose until I started taking Claritin, and then I suddenly could breathe at night, even lying flat!

    Low dose Naltrexone requires a prescription, but helps calm the glial cells of your central nervous system. Relieves my burning body pain by up to half. Some people really feel a difference with this; I'm one of them. Others not so much. I suspect that it's more for people with wide-spread (read: Centralized) signs and symptoms, not so great for those with CRPS confined to a foot or a hand, say...But I could be wrong.

    I take Gabapentin (Neurontin) 3 times per day since I popped with the trigeminal neuralgia. It is doing a really good job so far, but most days I have to go lie down in the dark while the afternoon dose kicks in, or else it isn't pretty around here, to say the least.

    I still take Aleve at bedtime; it acts on prostaglandin release. Prostaglandins are a mast cell product just like histamines are, and likewise are associated with pain and inflammation. I have learned from experience that I don't sleep very well without Aleve, Benadryl, and melatonin on board.

    My newest addition is Dextromethorphan: That's right; the cough medicine. It is an NMDA receptor blocker like ketamine, and so works to calm the sympathetic (fight or flight) part of the central nervous system. In the U.S., it comes in liquid or tablets, with quinidine or guaifenesin. It was a little trippy for about the first week I started taking 30 mg Dex with 600 mg guaifenesin (generic of Mucinex), but things calmed down and now I don't know what I'd do without it, because it not only helps with pain, but helps to lower my blood pressure, which had been running 140/90 on average for a year...But nobody wanted to do anything about it, mainly because I also have some problems with POTS- like signs and symptoms at times, so it would have increased my fall risk, etc..

    Trending now is treating a bunch of CRPS-like conditions with plasma exchange or immunoglobulin IV infusions. This is very expensive and time-consuming, but works fantastically for some CRPS patients, but not for others. Ditto the ketamine infusions. Ketamine was a freakin' miracle for me, but only for 3 weeks after each 4-hour infusion, and currently the insurance company has cut me off, hence the increased reliance on over the counter and/or dirt-cheap generic/off-patent medications in general.

    Anyhow, if I only medicated for pain and maybe anxiety, I would be a hot mess (OK; maybe just a worse hot mess than I already amwink ). But as it is, except during extreme weather changes, my quality of life is such that I experience hope and optimism for a better future. And I'm still walking on my own two feet, doing light house and yard work on "good" days.

    I feel for you, with your young daughter: I understand that many days you just need to survive, but if you can, try and make memories with her; don't focus on the things you can't do with her, but on the things you can, like reading books together if she enjoys that; or a special coloring or craft project that engages her but doesn't overwhelm you in terms of energy expenditure.

    Don't know what your constraints are regarding your doctor(s), but I would recommend either printing up a couple of articles for him regarding centralization of pain/spreading of CRPS symptoms, and if that doesn't work, attempt to get a new doctor who is better informed. Younger physicians seem to be better informed, ditto the doctors and nurses at major teaching hospitals. I have run into several CRPS "specialists" who were a decade behind on the research findings, above. All we can do is keep on plugging, right?? Better days ahead...Onward and upwardsmile

     

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    • Posted

      Thank you for all the advice, have you ever gotten a migraine after a doctor visit?? The evening of and 2 days after I had such a horrible migraine. With alot more burning pain in my arm, it was so bad on the 2nd day I didn't even get out of bed.

      About my daughter I do read to her and even color and do simple crafts, it's when she ask me to throw a ball etc that I can't do that's when it gets to me I never show her the pain but there's been many a time I just cried over the pain yes but more over the frustration and the disappointment in her eyes.

      I will definitely try the vitamin c and water. Again ty for all the advice

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  • Posted

    I’ve had CRPS since 2013. Both feet. I was having back pain so an mri was ordered. They found something.  So I’m off to my surgeon, who I know well. I explained everything that has happened to me since my 2012 surgery. He ordered a brain mri. 

    I HAVE MS!!! 

    I suggest you get one also. 

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    • Posted

      This is so true, CRPS is a diagnosis based on observations and is basically made by excluding all other diseases. You really need to make sure the other diseases have been tested for properly, get all the appropriate blood tests, MRI etc to rule out everything before you settle for a lifetime sentence of CRPS or fibromyalgia, any of the diseases that really have no definitive tests.
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  • Posted

    Wow sorry to hear this. I've been dealing with CRPS, fibromyalgia, degenerated disc and so much more. I totally feel you when you say nobody understands because it's true how can you explain this ongoing pain we experience everyday? My pain management Dr told me he was gonna be up front and said all he could do is keep you comfortable and recommended that I should be at the Mayo Clinic with a team of doctors to work together. I know it's not ez but we have to keep hope that oneday we'll find proper treatment eventually!!

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