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.
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 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.
Has anyone out there with CRPS managed to return to work?
View 32 RepliesI 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.
View 2 RepliesI was diagnosed with fibromyalgia about 18 months ago and I'm having a really bad flare up at the moment and still trying to work full time! I'm a beauty therapist so I Found I don't go in I let people down! I'm struggling to walk and my back and wrist is really swollen, I'm taking nurofen and paracetamol but they're not touching it.
View 26 RepliesI have just got worse throughout the day I had a seizure early this afternoon and the pain has just got worse. I have to stay strong for my husband and kids but inside I am crying right now . I am completely fecked off with it. I confess I am due on and the pain all over seems to be stronger. I am 42 and I am sitting in a chair propped up by cushions a blanket and a hot water bottle for my arms watching emmerdale , tried knitting a bloody scarf but my hands/ arms hurt.
View 44 RepliesAfter reading some of the posts lately, I started thinking about what diversion tactics I use to block out the pain. It got me wondering what tactics you all use.
Apart from getting on with life as best I can, I do a few things to take my mind off it all. Doing simple crosswords, I don't have the
or patience for cryptic. Watching TV programs like Antique
Roadshow and watching movies. Reading novels, and going online to read articles.
I had a very successful pain clinic appointment yesterday, by successful I mean i saw a Dr who wasn't a complete arrogant idiot, he was very nice and tried to think out of the box a little. I asked him for lidocaine patches and although he said he did not think they would work because of the pain being deep he was willing for me to try them, he couldn't prescribe them so he's written to my GP, he also suggested capsaicin cream and finally he thinks i should try cymbalta/duloxetine. I explained that id tried various anticonvulsants and hated them due to side effects and that i was not depressed (i probably should be) but i'm not, i get angry more than sad for the chronic situation but i don't feel hopeless and apart from super hellish days i cope fairly well.
The thing is my little boy is my world, i'm so concerned taking an antidepressant when i don't feel depressed will kick off depression, especially if they don't work and i come off. I used to suffer with depression when i was younger and i know how horrible it is and when your i was in that cycle nothing or no one mattered anymore so i'm concerned as i'd rather continue to live in daily pain knowing my son is getting the "real" me than be on any meds that might change how i feel or how i am towards him.
Does anyone have experience with these specific meds? Especially taking them for just pain and not depression?
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 just wondered if any other female sufferers of Fibro had pain in their vaginal areas? I am newly diagnosed and just coming to terms with the symptoms and pain that this illness brought along with it but this new pain has begun recently and seems to accompany my hip and lower back pain ..
View 52 RepliesSo yesterday I went to see the RA and it appeared as if he cared. He explained that I was severe with FIBRO and that there isn't too much that he could do. He upped my LYRICA to 200 mg (not sure why as it gives me more issues than taking pain away) . He also suggested that I go to a Fibro Clinic in UF , some where in the panhandle of Florida, I can not do it (Finances, Insurance, I don't drive because of LYRICA) . He also gave me a referral for SUBOXONE This is a medicine that they usually give for people who have had problems with pain pills.The RA explained how he just read an article in how this could help me. Has any one else experienced this? Did it work?
View 2 RepliesSelenium deficiency is considered by some naturopathic doctors the key to Fibromyalgia and CFS.
Some even relate it with animal “Nutritional muscular dystrophy” AKA “White muscle disease”.
Should we go to the vet?
Fibro is a like a box of dark chocolate, each centered chocolate has a different symptom filling. And leaves a nasty taste in your mouth.
FIBRO FOG MISTY CENTRE
PAIN HOT CHILLI CENTRE
MIGRAINE
LEG PAIN
BACK PAIN
SHOULDER PAIN
NECK PAIN
HIP PAIN
TINNITUS
EARACHE
JAW ACHE
NUMBNESS
PINS NEEDLES
CHEST PAIN
BURNING
SORE THROAT
AND MANY MORE NEW SYMPTOM CENTRES TO COME
I am stuck in a rut at the moment and can't seem to get myself out of it.
I am full of good intentions to go out and about, but when the day comes it's as if I am too scared to go through the door
Any ideas on how to get motivated?
I've had problems all of my life and at the moment my condition has worsened, but unfortunately it's something that we don't talk about. I've got fibromyalgia, arthritis and herniated discs in my spine consequently I'm in a lot of pain all of the time so it's a catch 22 situation my tablets cause the constipation but I need my tablets! What's the answer?
View 31 RepliesWhile the quantity of sleep can be important, what's much more important is the quality. Our bodies go through two distinct stages of sleep starting with non-REM (Rapid Eye Movement) and then into REM and cycling between the two throughout the night.
When we first fall asleep we drop into the non-REM cycle and this can be further broken down into three stages which move closer towards a deeper sleep. It's during the last stage where our bodies repair and heal and rebuild themselves. Non-REM sleep typically lasts up to 60-90 minutes with the majority of that time devoted to a deep sleep.
After this our bodies cycle into REM sleep. The main characteristic of this cycle is the eye movements that take place and before there were EEGs and ways of measuring muscle activity it was thought that our brains simply shut-off during sleep, this was far from the truth. During REM sleep our brains are quite active and this is the time when dreams occur, if you wake up and vividly remember a dream you were probably in the middle of REM sleep. It is also thought that REM sleep enhances our memory and contributes to our mental and emotional health. It's possible that during these two cycles of sleep we go through periods of maintaining our bodies and our minds.
Adults typically need between 7.5 to 9 hours of sleep a night and during this time our bodies will move through one cycle to the next and back several times. There are also a lucky few of us who seem to be able to function on less sleep...
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 Repliesi 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.
View 12 RepliesI'v just been given gabapentin from my doctor. Does anyone else take this and how do you get on with it?
View 15 RepliesI went out for a meal with work on Saturday night and have been feeling under the weather ever since. I initially said I wouldn't go but it was a special evening and I really felt that I should make an effort and go. I only had one small beer and lemonade but the food wasn't what I would normally eat and I did feel stressed as I had to sit at the top table which made it difficult to hear and join in conversations. I went to bed about 11.30 and slept for 12 hours. I spent Sunday afternoon in my pjs and slept another 12 hours last night. My muscles have been really twitchy and jerky and my appetite has been down. Do any of you suffer in either a similar way or differently after going out?
View 46 Replies