Health seems to be deteriorating: CSS? Fibro related?

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?

Oh I didn’t know there was a Facebook group what’s it called?

Thank you so much these are some encouraging words. I also have a lot of structural issues going on. Lumbar curvature, c3 issues, t6-t7 issues, SI joint mild degenerative arthritis, reversal cervical lordosis, so forth… so I know it’s a whole mix of everything.

It’s more the paralysis that I’m concerned about that’s new and my skin being mottled. I definitely need to rule those things out for additional underlying problems. Because I know it’s not fibro or CSS.

Thank you again so much this was super helpful! I’d love to join that Facebook group! PRC hasn’t given me much resourceful answers and my past doctors told me they were for temporary care but I’ll get all the answers down the road. It’s that “gut instinct too” like when I was misdiagnosed with Ankylosing spondylitis and went to Mayo the first time and go my fibro and css diagnoses correctly diagnosed

Oh I didn’t know there was a Facebook group what’s it called?

Thank you so much these are some encouraging words. I also have a lot of structural issues going on. Lumbar curvature, c3 issues, t6-t7 issues, SI joint mild degenerative arthritis, reversal cervical lordosis, so forth… so I know it’s a whole mix of everything.

It’s more the paralysis that I’m concerned about that’s new and my skin being mottled. I definitely need to rule those things out for additional underlying problems. Because I know it’s not fibro or CSS.

Thank you again so much this was super helpful! I’d love to join that Facebook group! PRC hasn’t given me much resourceful answers and my past doctors told me they were for temporary care but I’ll get all the answers down the road. It’s that “gut instinct too” like when I was misdiagnosed with Ankylosing spondylitis and went to Mayo the first time and go my fibro and css diagnoses correctly diagnosed

Hey there! I'm glad you found encouragement in my words... that's what I'm here for!! It is super important to hear when you're going through a confusing time. Now that I think about it - the private FB group I'm referring to may just be for Florida Pain Rehab graduates. We received info about the FB group called, "Living The C', with our packet on our final day. Which PRC did you graduate from? Rochester, I think you mentioned. I recommend contacting them and asking.

I think the best answers your PRC team can give you, or would give you, is to stick to the principles of the program no matter what is thrown your way. It is a solid foundation to keep progressing with. I've got two kids in their 20's and although they have seen me go through "my stuff" they have not gone through these degrees of chronic pain or conditions themselves. If they did, I would offer empathy, with a little tough love, and help educate them. Who is in your corner as a support system?

Do you mind explaining more about your paralysis? How are you affected by it? Has any doctor told you it is permanent?

I don’t really have a support system:/ I have my family but they have promised helping me get to the Mayo Clinic several times without following through at all over the past year so I am finding that support system in time with therapists, supportive doctors, pain groups, and of course my friends- but I don’t like to put anything on my friends even what I’ve been going through.

I can’t go back to Mayo Clinic any time soon because of financial circumstances so I have to make the best of my local resources and of course the knowledgeable I learned from PRC too for now. Not too sure about my paralysis symptoms doctors aren’t really so far that I’ve seen either. It seems to be getting worse is only thing I’m noticing

I have a feeling paralysis is a neuropathy injury that hasn’t been diagnosed yet

Please keep the faith. I'm glad to hear you have the support of your doctors, therapists, and friends. It doesn't matter where it comes from as long as you've got it.

I've had symptoms of numbness and weakness from neuropathy and Central Sensitization, kind of a like heavy deadness, which was enhanced by physical deconditioning, therefore limiting my abilities. Are these the symptoms you're referring to?

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

Yes! What kind of neuropathy do you have, if you don’t
mind me asking? And thank you so much for the encouragement!