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  • Reflex Sympathetic Dystrophy Syndrome (rsds)

    REFLEX SYMPATHETIC DYSTROPHY SYNDROME (RSDS)
    Wise Young, Ph.D., M.D.
    28 January 2008

    RSDS is a condition that sometimes called called Complex Regional Pain Syndrome (CRPS). I am pleased to see that Governor Jon Corzine of New Jersey signed the RSDS Education and Research Act of New Jersey on January 7, 2008 (Source).

    So, what is this condition that has attracted the attention of the Governor of New Jersey? It is a poorly understood acquired pain condition that is often associated with many diseases, surgery, trauma, cancer, neurological and cardiac conditions, and orthropedic problems.

    Diseases that affect the neck, shoulder, and peripheral nerves can trigger it. So, for example, degenerative arthritis of the cervical spine with associated peripheral nerve injury, shoulder problems, carpal tunnel syndrome, arthritis, stroke, shingles (a herpes viral disease that infects the dorsal root ganglia), axillary clearance [1], and various cancers can cause RSDS. This condition has many names, including causalgia, Sudeck’s atrophy, the shoulder-hand syndrome, or complex regional pain syndrome.

    RSDS manifests as painful, tender, swelling of the extremities, associated with sweating, inflammation, flushing, and shiny skin. Usually, the symptoms develop over several months with flushing, blanching, sweating, pain, and tenderness of deafferented extremity. Due to the pain, the victim often will not use the limb and avoid touch, so that the skin becomes atrophic (sometimes developing a “sheen” or shining appearance) with loss of creases. The pain is often burning and associated with sympathetic overactivity that causes the flushing, blanching, and swelling. Vasoactive changes can be assessed by thermography.

    Treatments for this condition are similar to those used for neuropathic pain [2], including topical analgesics, antidepressants, corticosteroids, opioids, and anti-epileptics. Most doctors will try adrenergic blockers such as clonidine, capsaicin creams, sympathetic nerve blocks, spinal cord stimulation, systemic (fentanyl patch) or intrathecal opioids, or intrathecal ziconitide (a caclium channel blocker). Anti-spasticity drugs such as baclofen and tizanidine may be helpful. There was one report that salmon calcitonin may be helpful when combined with physical therapy [3]. Motor imagery may help [4]. About 28% of patients do not respond to any treatment [5].

    If the condition affects the arm, stellate ganglia blockades are carried out. If sympathetic blockade works, sympathectomies may be carried out. For reasons that are not clear, the pain may return or may resolve spontaneously. Because the condition may be associated with so many different factors and conditions, it is not clear that it is causes are the same in many cases, making clinical trials hard to do.

    Themography, x-rays, and MRI have low predictability [6]. Clinical findings are reliable [7]. While thermography is often not diagnostic [8], it is useful for assessing treatment response [9]. For example, sympathetic skin response can be used to monitor CT-guided lumbar sympathetic blocks [10]. Some investigators have reported changes in inflammatory mediators [11]. Central sympathetic alternations are more important than peripheral sympathetic sprouting [12].

    Molina, et al. [13] recently reported that 9 of 393 patients treated with the calcineurin inhibitor sirolimus developed RSDS. Children with inherited mitochondrial diseases have a propensity to develop RSDS [14]. Zollinger, et al. [15] reported that high dose vitamin C (500 mg/day for 50 days) reduces the development of CRPS in patients with wrist fractures. Acupuncture may alleviate pain and reduce edema [16]. Intrathecal baclofen sometimes helps [17].

    RSDS may be related to other more generalized pain conditions. For example, fibromyalgia is a form of generalized sympathetic dystrophy and it is sometimes responsive to beta-adrenergic agonists [5]. Dystonia and hyperacusis may be present [18]. Studies in animals have suggested the sympathetic sprouting in periphery may be associated with sympathetic dystrophy [19]. Oaklander, et al. [20] suggested that there may be focal small-fiber degeneration in RSDS.

    References

    1. Khan F, Shaikh FM, Keane R and Conroy BP (2006). Complex regional pain syndrome type I as a complication of axillary clearance. J Pain Symptom Manage. 31: 481-3.
    2. Rocco AG and Raymond SA (2007). Comment on editorial: Is CRPS I a neuropathic pain syndrome? Pain. 128: 285-6.
    3. Sahin F, Yilmaz F, Kotevoglu N and Kuran B (2006). Efficacy of salmon calcitonin in complex regional pain syndrome (type 1) in addition to physical therapy. Clin Rheumatol. 25: 143-8.
    4. Moseley GL (2006). Graded motor imagery for pathologic pain: a randomized controlled trial. Neurology. 67: 2129-34.
    5. Eisinger J (2007). Dysautonomia, fibromyalgia and reflex dystrophy. Arthritis Res Ther. 9: 105.
    6. Schurmann M, Zaspel J, Lohr P, Wizgall I, Tutic M, Manthey N, Steinborn M and Gradl G (2007). Imaging in early posttraumatic complex regional pain syndrome: a comparison of diagnostic methods. Clin J Pain. 23: 449-57.
    7. Perez RS, Collins S, Marinus J, Zuurmond WW and de Lange JJ (2007). Diagnostic criteria for CRPS I: differences between patient profiles using three different diagnostic sets. Eur J Pain. 11: 895-902.
    8. Niehof SP, Huygen FJ, van der Weerd RW, Westra M and Zijlstra FJ (2006). Thermography imaging during static and controlled thermoregulation in complex regional pain syndrome type 1: diagnostic value and involvement of the central sympathetic system. Biomed Eng Online. 5: 30.
    9. Wu CT, Fan YM, Sun CM, Borel CO, Yeh CC, Yang CP and Wong CS (2006). Correlation between changes in regional cerebral blood flow and pain relief in complex regional pain syndrome type 1. Clin Nucl Med. 31: 317-20.
    10. Schmid MR, Kissling RO, Curt A, Jaschko G and Hodler J (2006). Sympathetic skin response: monitoring of CT-guided lumbar sympathetic blocks. Radiology. 241: 595-602.
    11. Schinkel C, Gaertner A, Zaspel J, Zedler S, Faist E and Schuermann M (2006). Inflammatory mediators are altered in the acute phase of posttraumatic complex regional pain syndrome. Clin J Pain. 22: 235-9.
    12. Schattschneider J, Binder A, Siebrecht D, Wasner G and Baron R (2006). Complex regional pain syndromes: the influence of cutaneous and deep somatic sympathetic innervation on pain. Clin J Pain. 22: 240-4.
    13. Molina MG, Diekmann F, Burgos D, Cabello M, Lopez V, Oppenheimer F, Navarro A and Campistol J (2008). Sympathetic dystrophy associated with sirolimus therapy. Transplantation. 85: 290-2.
    14. Higashimoto T, Baldwin EE, Gold JI and Boles RG (2008). Reflex sympathetic dystrophy: Complex regional pain syndrome Type I in children with mitochondrial disease and maternal inheritance. Arch Dis Child.
    15. Zollinger PE, Tuinebreijer WE, Breederveld RS and Kreis RW (2007). Can vitamin C prevent complex regional pain syndrome in patients with wrist fractures? A randomized, controlled, multicenter dose-response study. J Bone Joint Surg Am. 89: 1424-31.
    16. Xue LW, Li Q and Sun JQ (2007). [Clinical observation on penetration needling combined with electroacupuncture for treatment of post-stroke shoulder-hand syndrome]. Zhongguo Zhen Jiu. 27: 491-3.
    17. Taira T and Hori T (2007). Intrathecal baclofen in the treatment of post-stroke central pain, dystonia, and persistent vegetative state. Acta Neurochir Suppl. 97: 227-9.
    18. de Klaver MJ, van Rijn MA, Marinus J, Soede W, de Laat JA and van Hilten JJ (2007). Hyperacusis in patients with complex regional pain syndrome related dystonia. J Neurol Neurosurg Psychiatry. 78: 1310-3.
    19. Yen LD, Bennett GJ and Ribeiro-da-Silva A (2006). Sympathetic sprouting and changes in nociceptive sensory innervation in the glabrous skin of the rat hind paw following partial peripheral nerve injury. J Comp Neurol. 495: 679-90.
    20. Oaklander AL, Rissmiller JG, Gelman LB, Zheng L, Chang Y and Gott R (2006). Evidence of focal small-fiber axonal degeneration in complex regional pain syndrome-I (reflex sympathetic dystrophy). Pain. 120: 235-43.

  • #2
    So what does this do for my pain with someone with no insurance?

    Comment


    • #3
      thank you dr.young, for explaining this disease so totally. i was unaware of the bill that you mentioned from the governor of new jersey. any research that could lead to more understanding gives hope to all of us who suffer from this mystical disease. i understand from my research that there is documented reports of rsds dating back to the civil war; however, apparently little more is known regarding the cause and cure than it was back then.

      i have had nearly every treatment you mentioned in your article without success. for some reason the rsds has attacked my body relentlessly. i have had so many nerve blocks that i have lost count. i have taken most every drug you mention and either suffered a reaction or they left me so mentally incapacitated that i could not bear to miss out on life living in that type of drug induced haze.

      when my right arm came under attack, i had the stellate ganglia block in hopes of controlling the rsd there, but our efforts failed and the rsd rages on. i have tried to be very compliant and have tried every possible treatment, but for me, it seems nothing has been successful. i have also developed PAD, which does not help the circulation problems a lot! my doctor says some of his patients develop PAD and some do not.

      It appears that a lot of rsds patients share other common ailments that can not be directly attributed to rsds, but obviously since so many share the same problems there must be some sort of link. among these common medical problems that a group i have been a member of share, are eye sight difficulties, heart abnormalities...not necessary heart attacks but palpitations and abnormal beats, gall bladder attacks and subsequent removal, and an alarming number have had breast masses and abnormal pap smear results. in my personal situation, i have had 3 docs tell me that they can not medically pinpoint exactly what is wrong, but they "know" it is some how linked to rsds.

      as your article mentioned, a lot of that same group suffers from fibromyalgia as well, but thankfully i have been spared from that malady.

      if i could have one and only one question answered, i think that one would be: why do some people develop rsds and it remains restricted to one site, while in others it attacks one part of the body after another until it is all over. i have seen so many doctors and none have that answer. i guess if they did, they would have the answer to the cure. i do know that there are two beliefs among physicians; one group who believe it spreads and the other camp who feel that each new site is another new attack of the rsds. that is probably not a very good medical explanation, but that is how i understand it from my various docs.

      your article was great and i know you took a lot of time in gathering your thoughts and information. i am grateful that you took time to explain this disease to others here who may not have known what rsds is and how it affects people. i am also very happy to know that at least one government offical is aware of this disease and how badly we need to have research directed toward rsds. thank you, dr. young.

      Comment


      • #4
        Thanks for this, Dr. Young. I was just researching "peripheral nerve" in regards to ulnar nerve problems I seem to be having. I find it interesting just how much the sympathetic and peripheral nervous systems seem interact and to be the root of much of our pain; pain that only worsens with time, with muscle atrophy, stenosis of tissues and nerves, etc. (correct me any time, anywhere, please).


        Treatments for this condition are similar to those used for neuropathic pain [2], including topical analgesics, antidepressants, corticosteroids, opioids, and anti-epileptics. Most doctors will try adrenergic blockers such as clonidine, capsaicin creams, sympathetic nerve blocks, spinal cord stimulation, systemic (fentanyl patch) or intrathecal opioids, or intrathecal ziconitide (a caclium channel blocker). Anti-spasticity drugs such as baclofen and tizanidine may be helpful. There was one report that salmon calcitonin may be helpful when combined with physical therapy [3].
        I find this most interesting, and how little seems to have changed over the years. I hope this research will lead to better treatment of neuropathic pain in SCI too.
        get busy living or get busy dying

        Comment


        • #5
          CRPS and RSD

          I came across this study regarding CRPS,
          http://www.anesthesia-analgesia.org/...full/99/5/1478

          and considering I have some of the symptoms, plus being dx'd with an overactive Sympathetic Nervous system, which BTW, is dampened by Inderal, a Beta Blocker, I thought this might be of interest. Also came across this other article on RSD and would like opinion on the contents.
          http://www.medforum.com/jobline-srch...1/article.html

          Comment


          • #6
            dr. hooshmand is a name i have heard over and over since i was dx with rsds almost 12 years ago. my understanding is that he is one of the most knowledgeable physicians regarding the disease.

            as you read the article, if you were to pull out all of the WRONG treatments for rsds, you would find that i am the poster child for what can happen when these treatments are administered. every single wrong treatment for rsds mentioned in that article was used for me.

            the physician who performed the initial surgery that triggered the rsds knew the words rsds but he didnt know much about it and he certainly didnt know the proper treatment. he never told me that he thought i had rsds and i never heard the words while under his treatment. he told me he did know all about what he was doing and he initiated treatment that i thought was just from complications of surgery.

            the first line of treatment was total and complete bedrest for weeks. as my condition progressed, he put me into PT but all of the wrong PT including ice therapy. the pain from the ice was excruciating. i had quite a disagreement with the therapist during my session. i was encased in ice from my thigh to my ankle on the rsds affected leg and was in agony. i called the therapist over and told her to remove it and i got the "no pain no gain talk". she told me i had to tough it out. a couple of minutes later i called her back and she told me to grow up and be the adult i was.

            finally, i called her over and told her...either you get this off of me or i am tearing it off, but it is coming off NOW! she angrily relented and began to take it off. my skin had a blistered appearance and the therapist panicked. within a couple of minutes every therapist in the office and a PA had been called over. i was told to go home and go to bed and not get up for any reason until the doctor called me. that one treatment i think was pivotal in my rapid downward spiral as that set off an unbelieveable bout of pain and agony and the doc put me back on bed rest. he alternated aggressive and wrong PT with bed rest for several months.

            i have so many examples of things like this that were done that it would take pages and pages to write it all. i was also put on all of those no-no drugs listed. i was so out of it, i couldnt even function. all i did was sleep day in and day out. i couldnt even drive myself to my doctors appointments.

            i didnt know where to turn for help as i kept questioning the doctor and he told me to trust him. finally, i saw another doc for an entirely different reason and asked for help. he made a referral to duke university medical center in durham. they dx'd me and explained the condition but they do not treat it and made a referral to another facility where i am still treated.

            unfortunately, the wrong treatments, just as the article you posted warns, had accelerated the disease and by the time i finally saw a specialist only 6 months later, i had already gone into the advanced stages of rsds. even at that point i had irreversable dystrophy in my leg. they did all of the proper treatments mentioned in this article but it was just too late for any of them to be successful.

            so, immediate and proper treatment is essential for those who are dx'd with rsds. if only i could have known what i was dealing with and seen my current doctors sooner, i might be up on my feet and walking and not have suffered the spread to other areas of my body.

            the article you posted is full of good and accurate information. if only...if only...i would have known what the initially treating physician had suspected and i could have researched it, and found this article, i might have had a totally different outcome in my life.

            fyi, dr. hooshmand has a website with just about anything you would want to know about rsds. if you care to visit that site...

            http://www.rsdrx.com/

            i have considered trying to see dr. hooshmand, but since my own physicians use the same treatments and share the same philosophies regarding rsds, i do not think it would profit me anything to make the trip. i do not think at my stage of rsds there is anything to be done that has not already been tried. my hope lies in new discoveries and treatments for advanced rsds.

            Comment


            • #7
              Spinky I am so sorry the doctor got his hands on you. I surely hope there was an investigation into the procedures he recommended. And the therapist, crap! I'd have raised holy hell over it all. I also had problems with the use of ice during PT for the neck strain/sprain. I could have the ice on the back of the head and neck over the occipital lobes, but touch it to the side of my neck or shoulder and it was like fire on my skin. I had a physiatrist tell me to use ice on my shoulder, and I told him it was like fire to me. He said yeah so? It's going to hurt at first then get numb. I wonder how many people he will damage over his career.

              I did read some of the site you provided, very interesting. When I was first injured and had the arm, shoulder and hand reacting so bad, I scrutinized RSD closely. I determined that this was not my problem, but there wereneuropathic issues going on. I recall my second PCP asking why I wanted to find out so badly why I had to know exactly what was wrong with me. I think they wanted to just toss some head meds at me to shut me the XXXX up. Turns out that if I had succumbed to the Prozac, Paxel, Zoloft program, it would have caused me a lot of problems. I was given Elavil by a doctor for the pain I was having (he didn't want to prescribe more vicadin, controlled substance you know) and I took one pill and my tinnitis from the accident increased ten fold in a matter of one day. Needless to say, I took no more. And this is why I needed to find out what really was wrong. My doctors thought I was malingering and gunning for a higher settlement if I could extend my injuries longer.

              Comment


              • #8
                the doc was held accountable and he is no longer practicing as a result.

                to me, it would have been unusual if you had not been trying to find out exactly what was wrong with you. you would think that your pcp would have wantd to know definitively what was wrong as well. after all, how can you receive proper treatment unless you are correctly dx'd???

                if i learned nothing else from my experience with the onset of rsd, it was that if you do not push and search for answers yourself, no one else is going to do it for you. had you just allowed yourself to accept every word you were told and followed the pill program mindlessly, where would you be today?

                one reason you were smart to try to pinpoint what was going on with your body is that if it was rsd, immediate treatment could mean all the world in how it would affect the rest of your life.

                i am glad to hear that you did not have rsd; although if your sympathetic nervous system is over active, i wonder how close that is to rsd? sounds like you certainly have many of the same symptoms. your reaction to the ice is surely symptomatic of rsd. i am curious as to whether anyone ever explained the difference to you between having rsd and having an over active sympathetic nervous system. i would be interested to know, as in my mind i would say the sympathetic nervous system is certainly over active when one has rsd.

                i hope the website provided information that was helpful to you. i have read everything there. unfortunately, a lot of it is like reading a chronical of my life.

                Comment


                • #9
                  hen you have rsd /crpd you start differentiate yourself with the body part, it is no longer referred to as your foot , but "the" foot.
                  brain recognizes the inured area as a entity onto itself and no longer apart of your body . your brain no longer wants it and you keep thinking about sawing it off, amputation is wanted .
                  luckily my doctors said it would just make it worse, at the time it seems like th only answer/
                  it is weird stuff, luckily i got past It after a couple years of dealing with it, a epidural;l type block that stopped the out of control cycle worked, my foot use to go from cherry red and than black to Blanche white with in minutes while sitting down with it elevated .
                  cauda equina

                  Comment


                  • #10
                    i understand what you are saying about "the foot", "the leg", etc. a couple of years into my rsd, when it was only in my right leg and foot, i discussed amputation with my doc. my main reason was trying to get ambulatory again. as you said, amputation is a major complication to rsd, even though there are times due to circulation deterioration it becomes necessary. unless it is a life saving measure, amputation is never an option with rsd.

                    i have had more of those epidural blocks than i care to think about. mine were put in and left for an entire week while i was inpatient. i must have been inpatient maybe 6 or 7 times having those done and not a single one made one iota's difference for me. it is successful for many, but again, if you read my earlier post, it was the rapid progression that made all of my treatment options unsuccessful.

                    the color changes you mention are my daily cameleon impersonations! lol i have joked that purple is my fav color because if i dress in purple, my body matches my clothes!

                    i am glad you have found some relief with the epidural blocks. i hated those blocks but if they work they are well worth having done. it is great that they were, to some degree, successful for you, and i am glad to hear that, at least, your color changes have improved.

                    Comment


                    • #11
                      Spinky, I'm glad to hear the docotr is history. Takes one more dangerous man out of circulation.

                      And yeah, the idea of not knowing what was really wrong with so much going on with the left side of my body was really important to me. I mean I stopped PT because it wasn't helping and the Therapist was getting concerned. Shoot, he was probably relieved that I stopped when I did, liability you know. Actually the growing list of doctors (total I saw was 15 I think) were thinking I was a malingerer. Most didn't listen, although a couple of them were concerned enough to prescribe Tizanidine at least or make recommendations to my PCP, which she duly ignored.

                      I asked my Pain Dr a few weeks back what would have happened to me if I had stayed the course with these fools. He said I would have had one or both of the following happen. I would have gotten the worst possible headache I'd ever had in my life and had to go to the ER (stroke maybe?) because of this problem) or I would have developed atrial fibrillation and had to go to the ER for that. So stroke maybe or heart attack? Not a good selection. So this guy I think saved my butt.

                      I've had the time to do a lot of reading about all sorts of different problems, and revisited RSD a goodly number of times, when new problems arose. I think there was probably a very fine line between having it develope and not having it develope you know. What would have put it over the edge is anyone's guess. Why does one person get it and the doesn't? Perhaps because I didn't have a bunch of stuff done, shots, blocks, etc., and just toughed it out through the spasms, nerve pain, and muscle stiffness, is what allowed my body to start healing on its own accord and in its own time. I do have a lot of muscle loss in the left shoulder and left side of my neck which is going to need work once I can actually do PT without going into Occipital spasms.

                      I have begun to wonder if the sympathetic system causes the muscle stiffness in order to slow its owner down. You think?!?!?LOL!!! Certainly worked on me that way. I think I spent more time in bed this last year than ever before. Although I find out that it probably was responsible for the tremendous elevation of my Occipital Neuralgia pain. Because there were times I simply passed out in bed for hours and thought my head was going to implode.

                      Comment


                      • #12
                        Lee,
                        i am so thankful that you let go of those docs before they did irreversable damage to you. it seems like some docs just reach out there and do anything and everything without actually knowing WHAT it is they are treating. it sounds like you are very proactive in researching your symptoms and taking control over your treatments. i think sometimes as patients, we just do as we are told and do not feel at ease in questioning a doctor.

                        i had never had much sickness in my life before rsd. i was probably the healthiest person you could know. i walked everyday and rode an exercise bike. played with the kids on the playground, played volleyball and softball. i just didnt have much experience with dealing with doctors on any level much beyond having the flu. so when i initially had to have the knee surgery, and then everything started to go south, i believed in my doctor and trusted him when he said he knew what he was doing. i wish i would have been more like you and said....what do i have and why are you doing this?

                        i have replayed, in my mind, the day he told me i needed the knee scope at least a million times. i was not comfortable with it, and i didnt think i needed surgery. i argued with him and i even begged him to try pt first. (so it was a real kick in the teeth when i finally found out that pt would have taken care of the original problem). if i had only gotten a second opinion. i might would have too, but at the time we only had one orthopaedic practice in town and he was one of the docs there. so any second opinion would have been his partners and they would have just echoed his dx.

                        you are very wise indeed to question the docs, do your own research, use your own gut feelings and ideas to make your own decisions regarding your health and your treatments. i have learned to do that. i am very lucky now because the facility where i get my care has a large number of physicians and they work as a team. any time my doc suspects i need a treatment or surgery, he always consults with the team, and if the team decision is that this is necessary, then the physician with the most experience in that treatment or surgery will do the procedure. they have a specialist for each part of the body and i think i have seen almost all of them at one time or another! lol

                        i hate to hear that you have had to spend so much time in bed during the last year. sometimes, that is just all you can do. and, you are right, the rsd sure does slow a body down! these days turtles speed past me! lol

                        one thing that i have found that helps me a bit is, i use a heated mattress pad/cover. it is much better than an electric blanket because you actually lay on it, sorta like a whole body heating pad. i can not tolerate an electric blanket because the heating element in the blanket hurts me so much. plus, with the blanket i sometimes tended to feel smothered.

                        with the heated mattress pad, you are laying on the heated surface and as the heat rises you dont get so overheated. now with the rsd manifesting in my spine and since it has moved into my shoulders, i find this heat is comforting. it does not, by any means, take the pain away, but it does help a bit. ours is dual control so my husband can have his side off and i can turn my side up full blast if i want to!

                        i also just got a memory foam mattress topper. we have it laid out and are letting it fully expand and hope to have it on the bed by the end of the weekend. i have a couple of friends with rsd who say the memory foam has made a huge difference for them...so we will see. my heated mattress pad will go over the memory foam, so i will have both.

                        i dont know if either of those would help you, but you may consider trying one or both to see if you can find a bit of relief.

                        take care.

                        Comment


                        • #13
                          Originally posted by spinky88
                          one reason you were smart to try to pinpoint what was going on with your body is that if it was rsd, immediate treatment could mean all the world in how it would affect the rest of your life.

                          i am glad to hear that you did not have rsd; although if your sympathetic nervous system is over active, i wonder how close that is to rsd? sounds like you certainly have many of the same symptoms. your reaction to the ice is surely symptomatic of rsd. i am curious as to whether anyone ever explained the difference to you between having rsd and having an over active sympathetic nervous system. i would be interested to know, as in my mind i would say the sympathetic nervous system is certainly over active when one has rsd.

                          i hope the website provided information that was helpful to you. i have read everything there. unfortunately, a lot of it is like reading a chronical of my life.
                          Well Spinky, I had another appt with my Pain Dr today. And he finally spoke of this to me. I think he's been holding off to see what sort of person I am and if I can handle this news. I told him I was still waking most every night and flushing in the upper extremities. I then recited back to him what the flushing was from (dilation of arteries when I become hypoxic during sleep) and he just grinned away, happy with his student no doubt. LOL! Anyway, he said he's glad that I look stuff up and learn about my problems so as not to worry myself needlessly. Unless I let someone do something stupid to me, like give me epinephrine, this probably won't kill me. So he said today it was Complex Regional Pain Syndrome, because it affects different areas. For me it is the peripheral nerves and the muscle tone. With a smattering of the circulatory being affected because of the hypoxia. I had an episode of the left hand and forearm get cold (has happened before) but this time a week or so ago, it got all blue and red blotches. This was the first time ever it looked like this, so we do seem to have an issue going on.

                          I didn't get to talk with him much about this, he didn't want to get too involved in discussion about it. Said he didn't want to freak me out needlessly. So we shall leave it till next appt. So in the end it probably is a good thing that the slew of doctors I saw were useless tits you know. Because if they had been the type to be reactive and try to treat the painful arm and neck, no telling what would have happened as a result. If this had happened, and the arm had gone bad to spread up the shoulder to the next painful area that they would try to treat, my head and facial pain, we'd have been in a world of hurt.
                          Last edited by Lee555; 02-29-2008, 09:30 PM.

                          Comment


                          • #14
                            lee,
                            i am so very sorry that you got that dx. i know you suspected it, but to hear the words that you do indeed have rsds, especially knowing as much about it as you do, must have been very difficult to hear. as much research as you have done, there wasnt much room for him to ease into it with you.

                            how long have you been having symptoms? over a year from what you have posted here in this thread? it bothers me that you have probably been dealing with rsd for over a year and no one was doing anything to treat it. the nerve blocks can help in some cases.

                            so did your pain doc just say, yes, you have rsd and not even discuss any types of possibilities for trying to do something to help? pain docs are usually very well educated in rsd and i have found them to be some of the most knowledgeable on the subject. i dont know what part of the country you are in, but if you are close enough and would be interested in talking to someone else, i could share with you the contact info on my doc.

                            everything you describe is certainly what i experience with rsds. the flushing, the extreme cold to the touch, the red/purple blotches (listen for him to use the word mottling, that means. red/purple blotches! lol). my hands, feet, limbs will get so cold that they feel dead. i mean you would think you were touching ice. at other times they will be so fiery hot you would swear i was burning up with a fever.

                            i agree if you had had someone treating you who didnt know what they were doing and you had gotten spread to the face....bad news indeed. one word of caution, if you are having upper body symptoms, be very careful with dental work. dental work can cause spread to the dental area. i had to look for ages for a dentist familiar with rsd. he takes every precaution and schedules extra time for my appointments so he can do all he can to prevent any problems. i actually had 3 dentists refuse to see me because they didnt want to take the liability involved with treating a patient with rsd.

                            i am searching my mind to give you something positive. i can tell you that i know people with rsd where it is only in one area of the body. i have a friend with only one wrist involved. my doctor said there are very few people who have the involvement that i have. most people do not have it spread the way i have had, so maybe you will not experience that. i really hope that yours will be contained and not involve any new areas.

                            i cant tell you how not to have spread but i can tell you a few things the docs told me. never, ever use ice...that is not even something that needs to be said because ice hurts too much to even consider it! be extremely careful in your every day life to try to not get injured. any sort of break, sprain or injury is an invitation for rsd to move in. wear your shoes and dont chance going barefooted, as your feet always need to be protected. if you have to have any sort of surgery on any joint or limb, make sure a nerve block is used to try to prevent spread to that area. as i said, be careful with dental work. also, be careful with needles...blood being drawn, iv's, etc. because something as simple as problems with the iv needle can cause rsd. my doc will allow none of those on my right side as that is where my rsd is the worst. he will not even allow a blood pressure cuff on that side.

                            now that you know what you are facing, i would suggest that you sit down and develop a list of questions about your dx, prognosis, treatments, etc. take that list with you to your next appointment and talk candidly with your doctor and see what ideas he has for helping you.

                            again, i am so very sorry that you got the official diagnosis of rsd. your symptoms sounded so much like it, but i was really hoping it wasnt. i hope your pain doc will have some ideas for you that will help you find relief.

                            take care.

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                            • #15
                              Well let me say it is a bit of a bummer. The injury was Feb 07, so it's been a bit over a year. I was doing a lot worse in the months right after it, and it was mostly in my left arm. It would (and well sometimes the right arm) get shocky, numb, ache and just get dead at any point in the day. Pain between the shoulder blades was another problem. I have got to mention here that this is not the only problem I had. Right from the ER I had left side numbness problems to my face and this was/is from Occipital Neuralgia. I am guessing not a single doctor read any ER report to see this. I assumed (well shoot me for this one...I screwed up) what had been going on in the ER was being discussed. Actually I'm not even sure when I forgot about the facial numbness, too much pain under the bridge I guess. As well I have muscles in the neck and upper chest that go into spasm from the injury. And just a few weeks ago I had a muscle or tendon slip back to its proper location. This makes me able to now raise the bad arm up fully. It still needs to regain the muscle loss, but this is better than nothing.

                              As for him telling me this and then not discussing much about it, he knows I already know about it. If there was discussion about it he would be obligated to go the whole nine ugly yards. Besides, what good would it do to talk for 15 minutes about It? He knows I go online and research everything that we discuss. Considering the treatment of it with me, well I am not doing that horrible right now. The Beta Blocker is doing a pretty good job at controlling the Catecholamines, the Tizanidine is doing pretty good with the spasms, and when I need it, I have the Vicadin. When the ON gets out of control and the vicadin won't touch it using 1.5 tablets, I can go to him for a Toradol shot.

                              Got to tell you, the Beta Bl. even helps a lot with the aches when it is minor. Much of my pain is initiated from the Occipital Neuralgia and the neck muscles. And all he wants me to do at this point is to do stretching exercises, no heavy lifting. I have had some muscles contracting, the hand and upper arm, the pectorals on the left side, and there is a deep muscle in the neck that's been contracting and yanking on my C2 and C3 facet joints. I think there is also some tissue loss on the left side of my face, the cheek and cheekbone are not as fleshy. Will have to mention this next week.

                              At this point I thank you for the offer to talk with your doctor, I appreciate the thoughts behind it. We don't want others to suffer with this problem ever if we can help it.

                              I do want to ask what the timeframe it was with you and the start of your RSD. How quickly they had started the aggressive treatments, even if they were wrong.

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