Hi Rebecca under the papyrus...I'm glad that you've also been to a neurologist. A lot of problems can be tested for and ruled out and it's almost necessary to have a good one.
Exactly what were the lesions that showed up on the MRI? I hope your doctors are in good communication. It's becoming more and more common for that to be lost in our world of COVID today.
It's good that you went to a rheumatologist also. As a matter of fact, those are the doctors who are most likely to recognize the symptoms of CFS/ME. You may or may not have carpal tunnel syndrome...it's easy to mistake other symptoms for those of carpal tunnel.
Have your records transferred so the neurologist can also see them. As a matter of fact, it would be best if your picked them up at the Radiology Dept. of the hospital, along with the results of your lumbar puncture, and keep a copy for your own file and one for the neurologist. Symptoms are often hard to tell apart, so do be patient. I just hope you're able to get an answer.
I'm a victim of fibromyalgia (FM)....look it up to get a clear understanding of what it is. I also have problems with my ribs...painful, aren't they? You may be put on something like amitrpytiline or gabapentin to help with the pain and inflammation or even the second generation drug, lyrica. Trust me, they do help but the side-effects aren't easy to deal with. I found lyrica to be the most effective and easier on my system. But we're talking over a period of many years.
There is now a compound ointment that helps with this pain, also. It will require a prescription from your Dr. and has to be made at a compound pharmacy. Ice has also helped me in the past...heat seems to tighten things up too much (in my case). The usual routine is 20 minutes on and 20 off. Ace Bandage makes great ice packs that are fabric covered, and there is one large enough to almost cover your entire back. This will help numb the pain, but don't overdo it. Fortunately, these don't freeze rock hard and I just put a cloth of some type over them and always have extras in the freezer. Until the inflammation is controlled, you'll have pain.
Steroids are helpful in reducing inflammation, but do have the odd effect of making you feel capable of doing anything while on them. Then, when you're off, the weakness is almost unbearable. I suffered 10 falls after steroids were stopped and I'm not planning to resume them anytime soon.
I'm probably a fair bit older than you, have been through almost everything with this and I'm glad you had the lumbar puncture. I re-read your introduction and I can see that you're dealing with a neurologist...that's good.
I would see what both doctors have to say about your wrists...you don't want unnecessary surgery if you can avoid it. I was told I had carpal tunnel about 35 yrs. ago and it wasn't that at all. Fortunately this was before I had surgery. I still have pain today....the same type even. CFS is a constant companion.
Some things don't go away. That's why I say that something to help with the pain is probably best for you at this time. I don't have FM nearly as horribly as I once did. It has changed form over the years...the knots have disappeared. Acupressure helped, but we all have different responses to treatments.
It sounds like you've done everything possible with your doctors. How is your BP? I had very low blood pressure for years (POTS wasn't known about at that time) followed by what is now extremely high BP which started when I was 42. It did take me a long time to get over the after-effects of the steroids.
I'm also on small doses of xanax to help with anxiety. I was on non-additive meds for years, but I finally had to be moved to the big guns at the time I had shingles a number of times. Take good care of yourself, sound nutrition, liquids...the usual things you've heard about. I wish you well. Yours, Lenora.