← Return to Health seems to be deteriorating: CSS? Fibro related?
DiscussionHealth seems to be deteriorating: CSS? Fibro related?
Chronic Pain | Last Active: Jun 15, 2023 | Replies (34)Comment receiving replies
Replies to "Nice to meet as well! Hope you are doing ok! It was a bit more than..."
This You Tube channel has been helpful for CFS/ ME/fibromyalgia patients: CFS Unravelled by Dan Neuffer. Check it out.
Your situation sounds like an example of what my Florida PRC doctor, Dr. Sletten, prepared us for. Being blind sided by life and it impacting us physically, emotionally, and behaviorally. He said, "the one thing we can count on in life is change" (he was not lying!), and then reminded us that we will be so much better prepared for these curve balls since going through 3 weeks of an intensive rehabilitation program and learning tools to help get us through and keep us in our C-life.
As you, and I, learned in the PRC - acute pain is temporary and should resolve within 6 months or so, while chronic is long lasting, treatments become less effective, symptoms don't match up to test results, etc. I believed you mentioned prior that your doctors blamed fibro and CSS, and that Mayo docs said you were in severe functional decline before. The bags and not sleeping is stress from what you've been through. Stress over pain, Pain from stress. The cycle of pain continues. Pain behaviors increase, as well as deconditioning.
I agree with making sure you have seen all doctors in order to rule out "acute" diagnosis, and work on a recovery plan. This might help make you feel more comfortable moving forward and deciphering what you're faced with. Getting back on the CSS rehab train using your PRC toolbox and PRC resources will always be there for you.
It's no wonder you are exhausted with bags, you've been through a lot that's for sure, but don't give up hope! You can get on track again. You can make progress. You can shift your mindset. While you are figuring out doctor stuff, please get out your PRC manual, notes, PT book and read. Even watching the CSS video might help. It has helped me over the years tremendously.
Many graduates fall back to their B-life and have to hit restart. You are not alone. You restart as many times as you need to, when you're ready. Have you emailed your PRC doctors and therapists for support and their advice? You can hop on the PRC private Face Book support group to learn from others experiencing similar set backs. Do you still have you your books and contact info?