Health seems to be deteriorating: CSS? Fibro related?

I'm so sorry to hear of your difficulties! That's so much for someone so young! I've dealt with fibro for many years but never had anything like the things you're going through, thank heavens!
I would try contacting Angel Flight, a group of private pilots who will fly (in their personal small aircraft) patients to and from medical appointments. I don't know if Mayo has such a thing as a place for out-of-town patients to stay (for free or for nominal cost). At least maybe some of the high cost of travel might be allayed.
If you are in the US and you're not able to work, try contacting an attorney to file a Social Security disability claim, so at least you could receive some income and Medicare. It takes a while to get through the system, but it may be an option until you can recover.
I wish you the best - medical care, recovery of your health, and a good support network, Karla B

Thank you SO much!! This was very motivating and encouraged me to keep looking for answers and resources that are out there! Often my fatigue can be so overbearing that it seems like there isn’t another option available but I am going to make sure I look through this list of resources and go from there. Thank you so much again for taking the time to write this!

Good evening @fightingfibro0505 - it's nice to meet a fellow Mayo Clinic PRC graduate. I'm sorry you're struggling. Do you surmise your fall last summer set you back by flaring fibro and CSS symptoms? As I remember learning in the PRC, many things can get us off track and upregulate our central nervous system. How had you been living your C-life prior to the fall? And how about now? Are you sticking to a moderated schedule and stretching daily to start?

Amazing idea thank you for this!!! I got my initial intake yesterday and they want to do an in person general medicine examination. I have to pay off a bit from my last bill before I can visit again and then I’ll make the trip

Thank you for this idea!

Nice to meet as well! Hope you are doing ok! It was a bit more than a fall without going into too much detail; but I suffered whiplash, a concussion, and reversal cervical lordosis still needs a second opinion. My pain doubled within 1-2 months I’d say after the incident, it was definitely a severe incident. My car crash put an onset to my fibromyalgia and CSS so I could compare it to that before my car crash I only had back pain—- I believe it pushed my fibro and CSS over the limit like my car crash did and now my body doesn’t know how to handle it. I only know how to handle my prior body’s circumstances so it’s been overwhelming with the hypertension, migraines, right side paralysis, right hand less than 50% functioning compared to before, temperature intolerance, additional light and noise sensitivity, and my dizziness which has lead before to me losing consciousness so it makes me pretty fearful it will happen again

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?

This You Tube channel has been helpful for CFS/ ME/fibromyalgia patients: CFS Unravelled by Dan Neuffer. Check it out.

My prayers for you going through so much at such a young age. At present going through fibromyalgia pain it’s really awful

Hey, good afternoon. I can’t believe all the posts from the different groups I read today. It’s terrible that there are so many people suffering. I can’t even put it in words how I feel. Im throwing HUGS and likes to everyone. We all need them! I haven’t been on here for a few days cause I have my own situation going on and received bad new about my bloodwork on Friday. What bothers me is that I feel that there are solutions even if just temporarily out there but we are not privileged to them which makes me real sad. I know it’s hard cause I have to do this as well but just try to keep your head up and keep it moving. Winners WIN!!