Folk
Well-Known Member
So the thing is:
I've never really "crashed". Not like most stories at least.
For 8 years all I had was pain. Starting from the lower back, and then gradually spreading, develloping allodynia where any touch of clothes or sheets would hurt. And finally almost the entire body hurting (never had much headaches though). My Dgx was Fibro.
For years I took no medicine, but when I decided to exercise as advised by doctors I had my first "crash" my legs started to hurt so so much. I started taking Cymbalta and drinking green smoothies. Cymbalta dindn't do much for the pain, but the smoothies were like a miracle (50% better in one week). Then I got of Cymbalta and became vegetarian. One month after that I started having stomach pains and then everything went downhill... I got generally worse and worse in the next months to the point of becoming homebound with all the symptoms (fatigue, dizziness, headaches, A LOT more pain, GI problems, photophobia etc etc).
I got back at eating meat and started to pace myself, started Lyrica and started to get slowly better. I went to Dr. Kaufman in July, where I was diagnosed with CFS/ME, SIBO and MCAS for the first time (I'm from Brazil, none of these exists here). He was pretty secure of his diagnostic.
It's now one year after the homebound time and I'm much much better now, but still not close to the time where pain was my only problem.
The thing is I don't crash not even when I overdo it. I went on a 10 hour car trip to a three day event with lots of bands. My friends stayed there camping, I went to a hotel. But when I got there I knew I was in trouble. The place was HUGE. Anything you wanted to do you'd had to walk a lot and in highlands with ups and downs all the time. I did it, the way I could. I had to take tramadol everyday and I used to carry a chair with me so I could walk to the place and then sit otherwise my legs couldn't handle.
It was pretty exaustive. But we got back and I even drove 2 or three hours of the trip back. I'm like always. No remnants of the trip, no PEM.
I did feel pretty tired on the festival and with lots of pains, and I knew I was crossing my limits everyday. But I could do it and nothing close to a crash.
So... That would raise a lot of questions.
Is it just Fibro and not ME/CFS since pain is the main problem (even though Fibro patients crash too)?
OR is there subset that doesn't crash?
I've never really "crashed". Not like most stories at least.
For 8 years all I had was pain. Starting from the lower back, and then gradually spreading, develloping allodynia where any touch of clothes or sheets would hurt. And finally almost the entire body hurting (never had much headaches though). My Dgx was Fibro.
For years I took no medicine, but when I decided to exercise as advised by doctors I had my first "crash" my legs started to hurt so so much. I started taking Cymbalta and drinking green smoothies. Cymbalta dindn't do much for the pain, but the smoothies were like a miracle (50% better in one week). Then I got of Cymbalta and became vegetarian. One month after that I started having stomach pains and then everything went downhill... I got generally worse and worse in the next months to the point of becoming homebound with all the symptoms (fatigue, dizziness, headaches, A LOT more pain, GI problems, photophobia etc etc).
I got back at eating meat and started to pace myself, started Lyrica and started to get slowly better. I went to Dr. Kaufman in July, where I was diagnosed with CFS/ME, SIBO and MCAS for the first time (I'm from Brazil, none of these exists here). He was pretty secure of his diagnostic.
It's now one year after the homebound time and I'm much much better now, but still not close to the time where pain was my only problem.
The thing is I don't crash not even when I overdo it. I went on a 10 hour car trip to a three day event with lots of bands. My friends stayed there camping, I went to a hotel. But when I got there I knew I was in trouble. The place was HUGE. Anything you wanted to do you'd had to walk a lot and in highlands with ups and downs all the time. I did it, the way I could. I had to take tramadol everyday and I used to carry a chair with me so I could walk to the place and then sit otherwise my legs couldn't handle.
It was pretty exaustive. But we got back and I even drove 2 or three hours of the trip back. I'm like always. No remnants of the trip, no PEM.
I did feel pretty tired on the festival and with lots of pains, and I knew I was crossing my limits everyday. But I could do it and nothing close to a crash.
So... That would raise a lot of questions.
Is it just Fibro and not ME/CFS since pain is the main problem (even though Fibro patients crash too)?
OR is there subset that doesn't crash?