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 .
View 14 RepliesYes, 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.
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.
View 35 RepliesIn 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?
View 5 RepliesI 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.
View 6 RepliesI 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?
View 6 RepliesI'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.
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?
View 2 RepliesHas anyone else been diagnosed with this condition? I shall explain! for 10yrs i've been told i had arthritis in my right hip and right hand giving me chronic pain, only to be seen by 5 different doctors due to a recent change in location and investigations i've now been told i have , mild osteoarthritis in my right hip and the joint between my thumb and index finger.
Not only that but all differnet 5 doctors have said it was different things. seeing my own doctor today, she said (or applied) that the pain might be in my head, then to turn round and say that she was certain that i had A chronic medical condition and what it was she was unsure of.
Is this Chronic pain syndrome another name for they havent a clue whats going on?
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.
View 4 RepliesI have had various health issues in the latter part of my adult life but one thing that has always remained constant throughout is my groin pain. It does come and go but, in recent years, has become a real, persistent pain. I think I have learned to live with it until I was recently Assessed as having ME/CFS.
My support suggests I self medicate as all pain uses energy!
One specialist I saw suggested it was ACNES and gave me a cortisone injection which worked for a short while.
I have asked my doctor to do a scan for me just to see if it is related to my ovary removal 3 years ago.
That brought up nothing.
recently had blood tests done and no concerns there.
has anyone experienced this pain, just in one groin, not both; the right side ??
I would love to hear from anyone who has any thoughts on this or experience of it themselves.
I've been on LDN - Low Dose Naltrexone for a few months now. It's been a bumpy road and the journey has had both positive and negative points.
I've been adjusting the dose but in so far the 3 main benefits I can claim from it are:
- some sleep improvement;
- less pain intensity;
- apparent normalising effects on some blood markers such as LDH (lactate dehydrogenase).
However I feel exhausted to an unbearable point and continue prone to inflammation. I've decided to continue treatment with LDN because I've read extensively about it and many authors say it may take up to a yer to come to fruition.
Meanwhile I've resorted to naturopathic medicine and I'm under treatment as well.
We're all different in the way we react to medications and because I've been reading so much suffering here with so little hope of remission that I thought of encouraging you of not giving up and trying new things.
I would like to share with you a recent study on LDN whose Abstract is:
"The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic painJarred Younger, [corresponding author] Luke Parkitny, and David McLain
Abstract
Low-dose naltrexone (LDN) has been demonstrated to reduce symptom severity in conditions such as fibromyalgia, Crohn’s disease, multiple sclerosis, and complex regional pain syndrome. We review the evidence that LDN may operate as a novel anti-inflammatory agent in the central nervous system, via action on microglial cells. These effects may be unique to low dosages of naltrexone and appear to be entirely independent from naltrexone is better-known activity on opioid receptors. As a daily oral therapy, LDN is inexpensive and well-tolerated. Despite initial promise of efficacy, the use of LDN for chronic disorders is still highly experimental. Published trials have low sample sizes, and few replications have been performed. We cover the typical usage of LDN in clinical trials, caveats to using the medication, and recommendations for future research and clinical work. LDN may represent one of the first glial cell modulators to be used for the management of chronic pain disorders.
Keywords: Anti-inflammatory, Chronic pain, Fibromyalgia, Glial cell modulators, Low-dose naltrexone, Microglia"
Younger, Jarred, Luke Parkitny, and David McLain. “The Use of Low-Dose Naltrexone (LDN) as a Novel Anti-Inflammatory Treatment for Chronic Pain.”Clinical Rheumatology 33.4 (2014): 451–459. PMC. Web. 13 July 2015.
I know painful glands are common with Cfs under chin and in neck etc but lately im having sharp pains in the glands under my tongue- salivary glands im guessing. Nothing major- I just notice it a few times a day- anyone else have this?
View 7 RepliesI have Primary Sjogren's Syndrome but was born Hypermobile. It was only after my present Rheumatologist diagnosed that I have scoliosis that I started to research. I found the Beighton Scale and the Brighton criteria which I match completely. I explained my research to my consultant and she agrees. However while she and another consultant both agree I do have POTS so far I don't have an appointment to see anyone to help me. I have had ECGS and a bubble ECG but they have been taken while lying down. Now the POTS I really noticed post the birth of my last son 29 years ago is getting much worse, can anyone advise me as it has taken decades to get this far, I don't feel time is on my side
View 4 RepliesI 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.
View 3 RepliesAfter 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.
I'm a thirteen year old girl with an unhelpful doctor who literally doesn't want anything to do with me because I'm 'hard work' to diagnose. My family believes it's chronic fatigue syndrome, fibromyalgia or both. So that's the home treatment path I'm taking. My symptoms have been going for 6 months now and they are diarrhea, nausea, joint aches, headaches, fatigue, confusion, dizziness brain fog, tenderness, weakness and muscle pain. I've been tested for crohn's, ulcerative colitis, hypothyroidism, hyperthyroidism, parasites, dysbiosis, virus, infections and celiac disease. I also have eczema, restless legs, irritable bowel, anxiety and gastroesophageal reflux disease. I'm not under any stress at the moment.
View 3 RepliesJust wondered how other people cope with the family holiday. Being out of your normal routines and in a new place perhaps. What do you put in place to help you cope?
Being at home knackered is one thing but being in a caravan, apartment or hotel etc. is much different. Having to be mobile and do holiday stuff with the kids, can and is an overload for my system. Do you avoid going away because of things like this or is it just me?
The last 10-day holiday we took has taken me 4 months to get over! (Moreover, I was still feeling rough after 4 months…) I know I am lucky to be able to grab a family holiday, but I do wonder at times, if it’s more harm than good taking a holiday with ME/CFS.
I am currently applying for jobs, but I am unsure answer yes or no to the do you have a disability? question. I do have CFS, which does impact my life, although I am able to work. What do you think?
Went to see my gp yesterday and told her about my heart beat readings I've been having recently of 115 just to walk downstairs, 124 to walk upstairs, 135 to walk downstairs on a bad day. My heart rate goes up from 74 to 105 when laying down to standing. She took my heart rate as a sat there and it was 98. She's now sending me for an ECG. She thinks it might be to do with the sack or lining around the heart? She told me the official names but I was silly and didn't get her to write it down. Now I can't remember what she called. She said she has seen cases before.
View 3 RepliesI was wondering if anyone else diagnosed with ME is constantly thirsty? I've had all the blood tests (and have been diagnosed with ME), so diabetes is omitted. It seems to be worse on an evening and I'm always topping up my fluids with water and herbal teas-so plenty hydrated! It's not my worse symptom, but just wondering if it was common?
View 28 Replies