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Fibromyalgia -- Need help on how to handle severe pain
Fibromyalgia | Last Active: Oct 29, 2023 | Replies (156)Comment receiving replies
Oh my, you took the words right out of my mouth when you said, "The specialty I've gotten the most healing and progress out of, the quickest, has been physical therapy/physical medicine and rehabilitation. But it's crucial to find a PT or chronic pain program with experience in chronic pain/chronic fatigue/fibromyalgia, and central sensitivity, otherwise it can be really invalidating and hurt more than it can heal."
I suffered for years from a laundry list of pain causing issues, followed by a severe and long lasting lung infection that turned me into a couch potato and just about finished me! My PCP referred me to a Pain Rehab Clinic, where I see a laundry list of providers, the most valuable of whom is my PT. I am back among the "living and doing" - still some pain, but tolerable, still bad days, and a need to carefully pace myself.
Mind over matter is no joke - my therapist and PT are teaching me to acknowledge the pain, then figure out how to work through it.
I always try to remind people, your care providers have hundreds of patients, they will never know and understand every detail of what each of us faces. There fore we must be our own best advocates.
Sue
Replies to "Oh my, you took the words right out of my mouth when you said, "The specialty..."
Hi Sue,
You’ve been very helpful in the Mayo sites you mentor in. I wonder if you are aware of a website that fibromyalgia/CFS patients have found helpful: You Tube’s Dan Neuffer CFS Unravelled. He was sick for years and got well. Through his experience and interviews with other sufferers/recoverers and other professionals , he developed a program called ANS Rewire. It aims to reset the autonomic nervous system, which has gone awry and causes the various symptoms, like pain, fatigue, etc.
thanks for your mentoring.
J
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@sueinmn So glad to hear you're doing better, and that's so true about being "our own best advocates"!
The PT I was thinking of when I responded to this post--it's crazy when I realize that if I had given up, I would never have met her--she's the person who was able to help me find some of the most meaningful strategies to improve my pain--because at that point, I'd already seen 4 other PTs. I almost gave up on PT because the last person I saw gave recommendations that ultimately made my pain and central sensitivity worse!
In my heart, I knew he was wrong though, and there had to be a better way.
With those exceptions, PTs and physical medicine physicians will always have a special place in my heart--I love that they look at things and tend to ask: "What is possible, and how can we get you back to doing what you want to do?" Even if it might look different than I expected or be different than how I did things before.