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Thank you for this information. I was diagnosed in March 2024 after a traumatic injury to my right hand in January 2024. I still have more surgeries in my future but they are on “hold” until they get a handle on crps. Big concern for surgeon, and me is that the crps will be back full blown. I am undergoing ganglion blocks, therapy and meds now with better then it was before I started the treatments, but it is still in control of my life it seems.

So what medications are effective for fibromyalgia?

I feel like one big knot

I had CRPS following a foot fracture...that was excruciating and experienced all of the mentioned challenges, physical, emotional and psychoogical...it got so bad i entered a clinical trial...I reacted badly to the drug so they withdrew me in the 1st week.. I then started to use self guided nueroplasticity and after 9 months my foot was healed and all the pain, swelling, discolouration, despair has gone.. I was dissociated from my leg as it spread up to my mid thigh...my 1st step was speaking about "the foot" as "my foot" reconnecting and accepting the pain, then incrementally touching my foot, redirecting my emotions from helplessness to hope and pacing myself with incremental weight bearing, exercises and eventually walking... I hope I can encourage someone that this condition can be cured ...my foot and leg are just as good as my other one. The only evidence is my R calf is slightly smaller. All my compassion and prayers to those suffering/ overcoming this condition.. ❤

There’s a doctor in Nevada that says he can cut the nerve below the knee and eliminate all the pain, but she’ll have a dead foot and leg below the knee.my foot is already paralyzed and half of my shin the left half. I am digging into him a little more see if he can help me. I already have a doctor willing to amputate I’m getting close to that point CRPS due to severe injury.

I just got diagnosed with this. For a long time I thought I was just being lazy and fat. Turns out I was in full body pain and I was just trying to fight it. 😢 It sucks so bad.

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Fear. It's all about fear. Come to terms with the fear of pain and you can control the pain itself.

I live with crps , that a doctor mistake gave me , after a botched thoracic outlet syndrome surgery

High dose opioids reduced the pain enough for me to use physical therapy to restore my strength and mobility. A sudden reduction of 60+ % left me almost dead (from the CRPS spreading) and bedridden for over 3 years. There has been intermittent relief when ERs or Clinics like STANFORD increase my meds but the VA HOSPITAL has consistently countermanded the increase causing relapse and spread. The VA HOSPITAL has brought in a new Pain Management Dr who is negotiating the increase of my meds so I can have some functionality in my life. At the time of .y 60+% reduction I was capable of working my acre and half property, drive tractor (including switching heavy attachments, ride my HD motorcycle, ride horse, swim, etc. Now I am mostly confined to bed or my recliner, a walker and growing weakness (and pain). I am hopeful of the new Dr and possible increase in dosage so I can work on restoring some strength. I have not been seeking total relief from pain, rather the oopposite. Having worked in substance abuse field I don't want total relief but would like to maintain my pain level around 3 - 4 on scale, not constantly at 8 (in tears) - 9 (pain decreases my emotional control) note - 10 is unconscious and it has taken me there. I have had quite a few surgeries in my life and fought through the pain. I know I'm not alone and I hope my experience can be beneficial to someone else. They don't call CRPS2 the SUICIDE DISEASE forno reason at all and I have read many studies that show PAIN by itself can cause DEATH. A LOT OF VETS DIE BECAUSE THEY PLAY GUINEA PIG GAMES WITH THEIR PAIN MEDS. Richard

A partially severed Perennial Nerve started my adventure with CRPS2. After a few years of Nerve blocks and other treatments I was stabilized on high dose oxycodine (240mg/day) for over 20 years. THEN my primary care Dr at VA retired and the new pd Dr cut my meds by over 60% and al.ost killed me. The CRPS2 spread and the muscles in the thoracic area restricted my diaphragm and my blood o2 dropped to 83 and BP to 85/45. My lips turned blue and I collapsed. I was in a Dr's office when it happened so I survived. I have been mostly bedridden for the last 3+ years while trying to get VA to restore my meds. Each time I would end up in ER they would increase my dosage and I would improve until the VA put me back on lower dose. STANFORD PAIN & a number of other groups have told the V that I need the increase dosage to get anything like a normal lifestyle. Your video is one of the more accurate presentations I have watched. My CRPS2 spread first from left leg to right, then to my thorasic area and my neck and left shoulder. I get temporary relief for duration of increased meds. Final note - I have never exhibited any withdrawal symptoms during times of reduced meds or abstinence except increased pain. If I can help with your learning feel free to contact me. Richard

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Gabapentin and any other neurological medicine don't work on me too many side effects my body does not tolerate it

What is a chronic pain specialist? What are you qualifications to speak on RFA procedures?

Best explanation given. Specifically, the dorsal horns in the spinal cord misinterpret normal pain signals as crisis pain, and causes the sympathetic nervous system to keep the body almost constantly in fight or flight mode. A recent study injected plasma from fibromyalgia patients into healthy mice and in 100% of the mice demonstrated fibromyalgia symptoms. Now the theory is that it may be an autoimmune disorder like POTS, ME/CFS, and other disorders affecting the nervous system.

I had a RFA of the neck. Now the back of my head hurts when I touch it. Not only that the same day after my procedure I was in so much pain I went home and had a stroke. Never in my life have I had such a bad experience.

I don’t do facebook either, but I’m sure it helps many😊

So sounds like I should start walking with my tennis shoe with my drop foot brace instead of my medical boot because it’s not allowing enough movement during the walking process, is that correct?

Is it destroying my bones in the area?

I have had it for one year after a bad motorcycle accident ton of nerve damage in my body. I’m pretty much healed through 25+ surgeries and different parts of my body. I still have a paralyzed right hand, paralyzed left foot foot is where the CRPS is, I woke up with it after my first surgery. I was on opiates for six months and I can’t stand them extremely addictive and just end up taking more and more went through withdrawals. Now I I just do the best I can keep it elevated and that’s tolerable. I have a boot I can put on medical boot that allows me a little bit periodically my day our total I have started to look into amputation conditions, paralyzation, and CRPS thank you for all you do for this. God bless you

So, what are you advising to do to change the nervous system please?

So there is nothing one can do?

Exercising with active myofascial trigger points makes the pain worse and increases excitability in dorsal horn neurons.

She is way way over simplyfiying this !!!

I woke from my 3rd spinal surgery in 18 months whn I was 29yo in 1979 with a bright red, swollen, burning, massively overly sensitive, foot. Clearly a nerve was damaged during surgery. Surgery by the head of neurosurgery at Brigham and Womens hospital in Boston, good surgeon, and he diagnosed me day one. No internet. Just told me I would never walk again. I was on crutches for 25 years, went into a sort of remission for a while and now at 69 I'm trying to figure out how to afford to become wheelchair bound. Most don't know its thousands and thousands of dollars in the US. Medicare pays for a huge wc only. They dont care if you never leave?the house again. If we could get insurance to listen, not dangerously cut people off of pain meds and confine them to bed till they die. Because of insurance companies, this is easily a fatal disease - beyond the spread to vital organs. Thank you for this. I don't take pain meds but my life is tiny.

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Omgoodness. This is what any person who suffers from Chronic non cancer pain you need support. Someone who actually understands the Daily fight you endure. It is not a game trying to find Joy in a storm of daily pain. I don't even have FB but this is worth getting FB.

Omgoodness. She is so honest about pain. You need to understand the Why to know the How. Why am I in pain, what is causing this pain, now how do we treat it?. If you don't know the root ot the issue you end up in unending circle. She is right on point. I have been in this nightmare for seven years, two MVAs one was my last day on the planet. Doctors treat you like you at the Deli counter taking a number, next. You spend 5 to 10 minutes in the office until the next month.. repeat. You still are in the same pain. I am so tired of 1 to 10 pain level when you really a 15. Is there any help in our Sickcare system because we don't have healthcare. We are not in the healing business. Our system keeps us sick. We are not taught to help ourselves heal. I want to heal. No more pain.

It isn't curable

Having to cut off leaches who claimed to care & understand. Yet, they still call upon you relentlessly while making suggestions for my betterment. Oh really 🤔 so I can better serve you as I once did? I don't think so.

You are a Trailblazer! I am fedup with misinformation. Never give up, please. Thank you for sharing this information.

My mom when I was seven I told her I broke my ankle and she said it will heal in a few weeks it’s been 6 years and it’s not healing and hurts to walk. I know this isn’t technically chronic pain or that bad of a thing but I just want to share

My mom when I was seven I told her I broke my ankle and she said it will heal in a few weeks it’s been 6 years and it’s not healing and hurts to walk. I know this isn’t technically chronic pain or that bad of a thing but I just want to share

Correct

After 5 years of Drs I was diagnosed with fibromyalgia. That was in 1991. It's still hard to explain what it is but all of a sudden everyone seems to have it. The pain is over every inch of my body but some people say they have it in their knee or wrist etc. I'm pretty sure that's not fibro. It's widespread pain

😂🤣😂🤣 Brilliant!! Only if that could happen would be blissful.🙏 Just found your channel. Its helping me understand whats been going on in my body for yrs & yrs. I have fibromyalga & joint hypermobility. Arthritis now. I still keep my sense of humor its important i do 😊 I've went back to Salsa 💃 classes. To keep me active and moving. My job is physical also. Im exhausted. I need to keep moving or i would stiffen up. I go to saunas 🧖‍♀️ also they help get heat into my muscles & bones. Im soo glad you understand exactly whats going on with chronic pain ❤ Subscribed. Love from Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿 ❤

Fibro is nonsense used to defraud the gov for money

Excellent explanation 👍

After 30 years of chronic pain I was prescribed medical marijuana. It changed my life. Where everything else had failed now the results were swift and dramatic. Within four days the pain diminished then disappeared. I have my life back.

So what IS the cause/solution??

I have both 😢ugh

💔 😪 was working struggling 💔 so much finally after so many years of this I was diagnosed with CRPS it's the worst painful thing to deal with u don't know how you will wake up the next day and how it effects ur daily life

avoid narcissists to avoid being in flight or flight mode

I have had this for over 20 years and I’m now permanently disabled this has been the most frustrating and painful thing.

Like listening to my 84 yr old mom's TV volume.

This is really good

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Yup....that has been the last 20 years of my life. Just wanting a bit more of a life.

I have flare ups so glad to see this

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