Reflex Sympathetic Dystrophy :: RSD Or Nerve Pain?
Sep 24, 2013
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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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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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 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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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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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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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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Does anyone that has back problems have sharp nerve pain in their groin private area? I have had back problems for years and sometimes would get a sharp pain up my vagina. After a bad muscle strain in my back and using the elliptical machine I've had twitching and burning all over but also in my private area. Like around my **** it will twitch or vibrate, and then I will get the sharp shooting pain up my vagina and around my butt. I notice it more if I bend over that's why I thought it might be my back. I remember when the stabbing pain started I thought it was a female problem and my OBGYN said everything looked normal with my cervix and my paps have always been normal so she didn't know. She seems clueless.
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My 50 year old husband has been a Type 1 diabetic since he was 21. It was a late presenting of juvenile diabetes or so they said then. He has always done well managing his diabetes, wearing a pump for the past 15 or so years. In the past week or so, he has begun to have severe pain/tingling in his feet/ankles - mainly at night when he is trying to go to sleep. He usually has to get up and walk several times before he can finally sleep - he is only getting about four hours of sleep per night. He has an appointment with his dr - but not until the week after New Years.
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i can't cope anymore with the pain! All my nerves hurt neck scapula biceps pain all the way down arm forearm aching hand aching does anyone else have the forearm hand aching pain.
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I have had diabetes for several years now. I have nerve pain in my feet that is usually not too bad and comes and goes. Lately, my left ankle feels like there is a hair being dragged across causing a tickling feeling. Tonight, my right ankle has this sharp stabbing pain in it that has almost caused me to fall while walking. I have medicine for the nerve pain but don't like the side effects so I quit taking it. Could the stuff going on with my ankles be due to diabetes?
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I had DeNovo surgery on my ankle 4 months ago - lesion was 11 x 13. Surgery went well. I was NWB for 6 weeks, then in boot for 4-6 more weeks with PWB. Started PT at 10 weeks and was out of boot at 12 weeks. No problem with recovery or PT until that point. After I was fully weight bearing I had much more pain. On sides and bottom of foot as well as at surgery site. Still have lots of pain and sensitivity if I walk barefoot. PT was successful as far as ROM and strengthening but he doesn't want to push me any further because of pain.
OS says too early to say it did or didn't work, but I think it didn't and he won't do MRI until 6 months. He'll give me pain meds, but I don't like them and don't react well to them. The foot pain is bad! Could it be nerve pain?
I knew this was a long recovery, but I wasn't prepared for this! I ran for 30 years, which could have contributed to this problem, but now I'm wondering if I will ever walk pain-free again?!
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I have recently been diagnosed with EBV. I didn't present with the "normal" symptoms. I first experienced joint pain, then muscle pain, followed by extreme fatigue and muscle weakness. That lasted for about a month, then I developed sharp electric pains in my nerves and associated muscle weakness and numbness that comes and goes in my arms and legs. The nerve sensations have lasted for about 2 months. I seem to be healing
As I haven't experienced as many sharp electric pains, just numbness and tingling. I have been to a neurologist and have had an MRI of the head and neck which came back normal. Has anyone ever experienced anything of this sort of nature? I've been experiencing symptoms from EBV for 3 months now.
It's also important to note I was tested for Lyme and other blood work was done. Everything was normal except the ebv (which showed I had either contracted ebv in the last 6 months or it was.
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I've been having issue with my arm for 6 months now, tingling, numbness, burning in my forearm, hand and up to my shoulder. I also have a stiff neck. It all started with pain in my hand,thumb and wrist while using the mouse (I am a computer IT analyst) and slowly started to affect the whole arm, shoulder and neck.
I have had an ultrasound to check for tendonitis, Nerve studies to check for Carpal tunnel and cubital tunnel and they didn't find anything. I had an MRI of my neck and it's normal apart from some cysts adjacent the nerve roots.
One doctor wants me to see an orthopedic surgeon to have them checked and another thinks they are asymptomatic and aren't the cause of my problem.
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I have been dealing with pain in my feet for several years which has gotten progressively worse. The past 6 months or so have been so bad that 3 months ago my doctor prescribed Gabapentin which helped significantly for a brief few weeks, but I am at the highest levels now and there is a new pain in my right ankle that will just not go away. I am weaning off of the Gabapentin so that I can try Lyrica. I am being scheduled for a nerve conduction test to try and determine what is wrong exactly. I am not diabetic. I believe it is from too many years of standing/walking on concrete (I'm a caterer/chef) without proper foot support. My doctor seems to support this opinion, she does not seem to have any answers. Just had blood work done, I am in excellent health otherwise! Am so worried that I'll be unable to continue working. Pain is relentless. Cannot live on pain pills, just do not want to go down that road! Anyone out there have experience with this sort of problem? How about Lyrica?
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I have been taking Fluoxetine (Prozac) for nearly 7 years and will shortly be taking Gabapentin capsules (opened cos i cannot swallow capsules) for 2 weeks at 300 mg (once a day), then 2 weeks at 600mg (twice a day) and then 900 mg (3 times a day). My nervous system is shot meaning that my body produces too many chemicals making the slightest nerve pain excruciating. Also have a trapped nerve in my foot which means exercise is limited. Is it best to start taking these in the morning? By week 5 i will be taking them 3 times a day. Is it advisable to take them at roughly the same time of day?
I don't work fortunately so if i get any bad reactions i can deal with them at home.
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Has anyone tried methadone for nerve pain? I've just started a low dose and wondered if you had any side effects and how long they lasted? Most important, any relief?
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