Experiences? Reflex Sympathetic Dystrophy / Complex Regional Pain Syndrome
Mar 26, 2016
I am interested in anyone who has been diagnosed with RSD if you wouldn't mind sharing your story. How soon after injury you were diagnosed, who diagnosed you and what changes you saw and when. Do you have all symptoms like skin and nail changes and when did this happen ? My dr recons I have it but I'm still not convinced though I do have signs of it and no other explanation as to why I still can't walk five months post ankle break.
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Yes, I successfully cured/healed RSD! It is possible!
I effectively "cured" RSD with holistic treatments. I encourage anyone who suffers with RSD consider the holistic regime I created for myself. You can do it too.
Brief explanation of my RSD journey:
Once, I, too, suffered severe Type II Reflex Sympathetic Dystrophy to my right foot and entire right leg up to my hip which presented itself after auto accident injuries stemming from both fractures and a ruptured plantar fascia in my right foot.
I was fortunate I had an early diagnosis (from my Chinese Doctor, who called it "nerve damage" and was first to diagnose RSD. Only because I was "pro-active" and pursued another opinion regarding my symptoms outside the closed box of conventional/allopathic medicine, which was the only treatment medical insurance will pay for.
After my initial nerve damage diagnosis, I brought this vital diagnosis to my allopathic doctors (who actually missed diagnosing it despite my detailed description of the pain and symptoms) who then concurred with my Chinese doctor's diagnosis and for the first time in my life I heard the words Reflex Sympathetic Dystrophy or RSD.
I refused allopathic treatment of RSD (4-6 "nerve block" treatments were recommended to begin by several MDs, including anesthesiologists, sports medicine doctors and Podiatrists). Why? Intuitively speaking, I considered the nerve block procedures to be far too invasive and risky, and which required general anesthesia (additional risks), the use of a fluoroscope (unhealthy exposure of radiation), injections of cortisone and a long acting local anesthetic marcaine, and worse, the end results were NOT at all promising.
Instead, I committed myself to a more holistic approach toward healing because I trusted the wisdom of the body's ability to heal.
Immediately upon my nerve damage diagnosis, about 6 weeks after the auto accident, I began my daily regime of holistic treatments, which included acupuncture, naprapathy, osteopathy, physical therapy, physical exercise physiotherapy which I did for the next 6 months. (As a precaution, in case I did not gain immediate results from my holistic regime, I did arrange advanced appointments with an anesthesiologist to perform nerve blocks. However, I later canceled these appointments because I began to gain positive results relatively soon after I began my holistic regime to heal RSD.
After the first six months of intense daily regime of holistic treatments, my acute and horrible symptoms slowly began to disappear. Gradually, the dark reddish-brown discoloration of my foot and leg began to fade, the inflammation/swelling slowly began to reduce, and the distorted and abnormal shape of my right leg and foot improved (which my husband likened to a "slab of red meat" that "looked like something hanging in a butcher shop"). The over the top excruciating nerve pain (which was off the charts, not in the 1 to 10 range, when asked I rated it "100+++!") to the slightest touch or even a sheet touching my foot was far too painful to bear, slowly began to dissipate into the 1 to 10 range. The complete loss of normal ambulatory function with my right leg and foot (I required a wheelchair or crutches to hobble around on my left leg) began to slowly improve after much treatment and with my determination to be pain free, to walk, run and dance again, I "pushed through the pain" with the physiotherapy machines and "re-learn" how to walk again. I literally reprogrammed my brain to walk again.
About six months into my holistic regime, I was again able to walk on my right leg and foot without the aid of a cane or crutches. However, each time I flexed my right foot to walk, it was painful, far too painful to walk long distances. I rated it an 8 on the 1 to 10 scale when asked by an anesthesiologist which I deemed completely unacceptable live with the rest of my life.
This anesthesiologist, with whom I had a 6 months post-RSD diagnosis exam (for medical insurance purposes) was the director of the pain clinic at Kaiser Hospital in Sacramento, CA. This anesthesiologist, who would have otherwise performed nerve block treatments on me had I surrendered to them, wrote in my medical records, "patient sought alternative treatments with acupuncture, osteopathy, naprpathy for treatment for RSD and achieved remarkable results..." My Kaiser podiatrist wrote, "patient had miraculous recovery from RSD with holistic treatments..." My Kaiser internist, my private St. Francis Sports Medicine, a medical doctor, my Kaiser physical therapist all wrote similar comments in my medical records which not only validated my intuition to take the risk to explore holistic treatments but provided substantiation that they were effective and beneficial which forced my Farmer's Auto insurance company to eventually pay for my holistic treatments which were all rejected. Two years later I was reimbursed for all my holistic treatment costs.
I want to offer another perspective into the closed, blocked mindset dogma of allopathic medicine and doctors. During my final exam with the anesthesiologist(as previously mentioned), although this doctor was quite expressive about her amazement of my then-recovery with RSD, she still remained stuck in her dogma when we discussed my pain level. She actually told me that I had reached the limitations of any more recovery because I had passed the 6 months window of time for nerve damage. She said, "I am sorry but I am afraid you will have to learn to live with the pain."
This director of Kaiser's Pain Clinic which treats RSD patients continued to reinforce her assessment that I would not improve, that I reached the limits of any possible recovery. She told me how lucky I was, how much better off I am than most of RSD patients who never get better and only worsen, etc., and I assumed she meant that I would waste my time and money if I continued with holistic treatment.
She shook her head when I told her I wanted to continue with acupuncture treatments until I was completely pain free. She may have meant well and didn't want me to have high hopes of recovery and then experience failure, or whatever. This anesthesiologist, who performs nerve block treatments, gave me all the information of what she knew based upon her 20+ years of experiences with RSD patients.
Fortunately, I did NOT accept her prognosis. Instead, I passionately said, "Doctor, I trust the wisdom of the body to heal and I shall continue with acupuncture treatments until I am completely 100% pain-free. I'll be damned if I willing to live with this pain and can't go for long walks, run or dance the rest of my life because a jerk ran a stop sign and plowed into me!"
Her expression spoke volumes. She was a bit astounded by what I said but not one word of encouragement was spoken. There was a long uncomfortable pause between us. Finally, I said, "One day I will return and prove to you that I am pain free and then you can bring in an acupuncturist, a naprapath, and an osteopath into your pain clinic to help RSD patients.
It took another six months of treatment before I was completely pain free and before my right leg matched the color and size of my left leg. My internist/primary doctor was thrilled by my recovery and accredited it primarily to my "positive attitude and determination." Kaiser wasn't interested in accepting my recovery was due to holistic treatments. Instead, it was just considered "miraculous" remission of RSD which, of course, does NOT give any credit to all the beneficial holistic treatments I had.
I am still pain free after 11 years and walk miles daily and go dancing twice every week. I am grateful for all of my holistic doctors, I hope my allopathic doctor learned from my experiences and success with curing RSD.
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I've had RSD now for 2 years and now my doctors say I have unfortunately developed chronic pain syndrome and its to my understanding it's creating more pain that is feeding on the pain that is a viscous cycle and very hard to break my question is does anyone have CPS on top of RSD for just when I thought this is enough there's more .
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In pain after botched bunion surgeries by podiatrist, underwent reconstructive surgeries with OS. Still in pain, now was diagnosed by OS with RSD. 3 phase bone scan showed "increased blood flow and soft tissue uptake in the right ankle and foot. There is intense increased uptake in the right first metatarsophalangeal joint likely represent reactive postoperative change and consistent with postsurgical changes and reflex sympathetic dystrophy in the right lower extremely". Pain management said that as I DO NOT have swelling, change in color and temperature, it is not RSD and sent me back to OS, who already told me that there is nothing else he can do surgically. So I have terrible burning and stabbing pain and muscle spasms. I just want to understand if RSD is a nerve pain or is the result of some abnormal process in bones as was indicated in my test?
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I am at the end of my rope!!!!!! I have crps following botched surgery almost 5 years ago. I was on percocet for the first 2.5 years until a new pm doc told me it was bad for my liver and changed me to opana - 5 mg, 3 times a day with oxymorphone 5 mg times a day for breakthrough pain. About a yr and a half ago I developed horrible anxiety which has stayed with me since. The doc said maybe the new formulation didn't agree with me but made no changes. I wake up from sleep in the morning screaming and crying, so agitated. The pain docs don't care as long as your pain is under control. the doc added methadone at my last appt to curb the anxiety in the mornings but I'm to scared to take it. I've read it's more addictive than all of them. I don't function anymore, don't leave the house, cry several times a day. Has anyone experienced this? I feel insane and these docs don't seem to care. Last year I went to a psychiatrist and spent the entire year trying every anti-depressant int the book but none worked. They just raised my anxiety. I really think it's these pills.
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I wanted to get feedback on sedation , I get procedures every 10 days for the pain I have my doctors so SGBs on one foot then the other for I have RSD in both feet and the surgeon uses versed to sedate me and I now I've built up a tolerance , they use 4 doses where as when I first started I only received 1 dose but now this last procedure I felt no relief so the sedation is not working and it's very painful to do these nerve blocks without sedation so I'm lost as to what to do I'm considering stopping the injections because of this has anyone experienced the sedation not working anymore and if so what did you do?
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I've had RSD diagnosed since 1987, and the rheumatologist who diagnosed me, made me think back and he actually told me that I've had it since a child. I'm 68.
My question is, has anyone had a problem with their teeth fracturing? I've always had good teeth, but this year 4 fractured and fell apart and out. This evening eating dinner I had another one just fracture up and it was gone.
I have asked my 4th Dr. now, if it was the Suboxone I had been on, he immediately said no, who told you such a thing? I said no-one I was asking you a question! I have bad TMJ, which I think is just another area of RSD.
On Pain Meds, I can keep active and fit, keep my joint mobility. I am a horse trainer, so it is imperative that I had my pain addressed. Well that stopped in Nov. Have not had a pain since then. My new Dr. had RSD himself, in his foot and physio fixed it, so he figures my is all gone. He told me to take a Tylenol 3 or Aspirin. I am getting pretty stove up right now, pain virtually everywhere. And now I have no backup.
I live in BC Canada, and when we moved to the Chilcotin, the Dr.s in the nearest town have gotten together and said they would no longer give narcotic type drugs to anyone, and they would not send any of their patients to specialists, because they gave their patients too many drugs they didn't need. Now does that make sense, they should listen to themselves.
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I have RSD in my right leg, hip, & lower back. I hate the days that I have to shave my legs because it causes me a lot of pain and makes me extremely grumpy, especially since I always have hair on my legs again within 24 hrs. I am considering laser hair removal so that I don't have to go through this painful process, has anyone had it done?
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to understand fibro pain more
look up complex regional pain syndrome on the NHS choices page its a fairly new article only placed there today .your find it very interesting and might be a step forward to you understanding your pain better.
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Has anyone out there with CRPS managed to return to work?
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I have been dealing with the first few months of CRPS which started as burning hot and has changed to a freezing foot that turns blue or purple. Lately I have noticed the bottom of my foot will be ice cold but the top of my foot is normal temp, my toes are like ice. Is anyone else experiencing this? I am battling the workers comp nightmare right now and I hate to tell them about this as it may complicate an already horrible experience dealing with them.
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I am a 42 year old mom of 2 boys. I have been healthy most of my life. In 2011, I noticed some numbness in my left hand and it seemed to be "clumsy". My mom has MS so it scared me. Considering my family history, my family doc sent me to neuro and to have an MRI. The MRI and my exam turned out to be normal. The neuro said it could be my ulnar nerve. 2012, another episode and this time with worst headache ever and blurred vision. Once again I checked out fine. Then in July 2014 while on vacation, I became dizzy and started to stagger. I went to an urgent care and they told me I had vertigo. After that the vertigo/clumsy remained, and I started having myoclonic jerking of my muscles and headache. I was checked by neuro when I got back from vacation. The vertigo went away but muscle jerking remained. Normal exam and bloodwork. August 21, it came back the vertigo/clumsy feeling, headache, my legs being sensitive to touch, and I occasionally repeat things when speaking like my brain can't remember. I went to a recommended neurosurgeon. His exam revealed Babinski reflex, Hoffmann reflex and brisk reflexes. It was symmetrical on both sides He ordered an MRI. I couldn't get in for almost 2 weeks. The waiting is making me crazy.
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i am really struggling with my fibro. The doc has told me to persevere with this tablet. He has also gave me an anti sickness tablet. I would like to know people's experiences with this please.
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After numerous medical consultations and exams I finally was referred to Addenbrooke's Hospital in Cambridge to a specialist in the audiologist department.
It appears that I have an issue with the Stapedial reflex muscles. This causes me pain resulting from normal level sounds.
They have prescribed relaxation and sound therapy rather than surgical treatment at this stage.
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Constant pooping, acid reflux, chest pain, and headache, and 9 months insomnia.
How to cure without sleeping pills?
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I am due to have a trapeziectomy shortly and think I will choose to have a regional block instead of a general anaesthetic. Has anyone else had this? I would be interested in hearing the experience of others.
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I am French. I’m 28, it’s being 2 years and a half that I have blood in the urine with horrible pain.
I had 3 ureteroscopies who have given nothing and now the professor who follows me told me I have the loin pain hematuria syndrome, and there was nothing to do. The only thing I can do is to wait till it’s going better. He refuses to make a biopsy and told me to take aspirin.
I wanted to know if you know doctors who offer other drugs. I've heard of self transplantation and kidney innervation;
I've been in different hospitals and doctors tell me that the pain is bearable and advised me to consult a shrink. I do not think my pain is psychic. I wanted to know if U.S. medical research is more advanced than the French one.
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I came across this syndrome when searching the Internet about extreme pain I have when I take the first bite EVERY time I eat and sometimes drink. That this could be a symptom of this syndrome but I don't know. I do have some of the other symptoms, i.e. neuropathy, blurry vision, muscle pain, fatigue but these can also be associated with Type 1 Diabetes which I have. Also, came across parotid/salivary glands are affected which also can cause the jaw to ear pain I'm having. Has anyone heard that the Coxsackie virus can have anything to do with it? How do you know for sure if it is Sjogren's and what type of doctor do you see about it - a primary?
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I don't agree with my bpd/eupd diagnosis and believe that this is the condition I'm actually suffering from. I'm not self-diagnosing just wonder if anybody has this and can tell me a little bit how it affects them?
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I just started reading about this and it really sounds like I may have this but I'm not sure. I have headaches sometimes that are awful and seem to start from my neck and back of my head. I see a chiropractor once a month and my x rays showed problems in c5 and c6 in my neck. I also have notalgia paresthetica which itches me too death sometimes in my right back shoulder. We figure it's caused from the c5 and c6 in my neck. I never sleep all through the night, always tossing and turning. And I feel fatigued ALL the time no matter how much rest I get. I had a blood test and my vitamin D is low. I can find "knots" on my back, usually I can find about 5 or 6 of them, even on my sides. I work a very physical and mentally stressful job and this causes me a lot of pain. When I am working usually mid day I will get a horrible sharp pain somewhere in my back and it just stops me. It's like someone taking a hot knife and stabbing me with it. It's hard for me to straighten myself up. My pain is in my mid and upper back, rarely ever in my lower back. I do get dizzy sometimes also and feel off balanced.
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My latest lab results read:
TSH with reflex to FT4 - 19.825
T4 free 0.4
I keep seeing a lot lower numbers on this board and cannot find anywhere that shows more info on my numbers.
How bad are those numbers? My Dr just upped my levothyroxine but acted like it was no big deal.
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