Hi there, good “morning”! Ideas for this got me out of bed, but priorities interrupted them… * sigh *
After the nice personal welcome’s and reactions in this forum, I’d like to try sharing my daily experiences with you, focusing on helping me live with and do more about my symptoms more consciously. It’s a need of mine to interact, will unburden people around me, and who knows - may interest or even help you in your fibro-life… Both my writing and your reactions will help me think and improve things, so please ask and comment directly whatever you like.
An overview of where I am fibro-wise: After decades of pain thru back, skin, gut, nerves and anxiety I got to keep all of these well under control. Still contributes to having “30” diagnoses and has lead to more and more new habits, but also a mindset of happiness and optimism, blessed by a great deal of energy & motivation & joy to help others and increasingly myself.
A periodic ache led to the fibro-diagnosis floating around between my GPs and myself for quite a few years (8?). My increasing stiffness made my wife worry about rheumatism. That drove me to
get appointments at 2 rheums last autumn, just in time to start the machine running whilst my full flare got under way. The local one meant waiting for 6 months, so I arranged another in between, further away. That first one ruled ankylosis sp. out, and also fibro, the second in Feb20 “ruled it in”. To rule out ank.sp. I was sent to quite a few different specialists, who found a tumor, a probably harmless chance finding, but nothing else. These starting experiences made me look further and further, taking up suggestions, ending up with now 40+ specialists in 25 different disciplines, incl. a centre for rare diseases and a rheum. clinic and further chance findings of cardiovascular issues (genetic hyperlipidemia, 5 meds, even stricter diet). At the same time I was skeptical as regards medicine, funnily. This was nurtured by quite a bit of insight into university medicine, herbal medicine and my own research over years, plus the fact that my body - esp. gut, skin & seizures - doesn’t tolerate much meds, not even necessarily herbal. That lead me to look for and try all kinds of herbs and alternative treatments against pain and sleeplessness. Meaning altogether 60+ “treatments” (incl. “tricks”). Most didn’t help, a lot harmed. Against my core fibro-symptoms about 8-10 treatments have remained: whole body cryotherapy, “acupressure-massage” (& osteopathy), cold showering, Wim Hof’s breath-hold exercise, putting legs & arms up, “yoga” back and hand(/arm) exercises, arnica cream and a hot water bottle. None! of these were ideas from docs, the main 4 (with 1 spin-off) were ideas from 3 good friends, who I am very thankful for! (And they are very glad they could help me, too.)
My core fibro-symptoms are: Big Ache (can be with shakiness, fever-/flu-feelings), quick exhaustibility (with energy-spurts under 3 mins.), stiffness all day after not moving a while (originally 10 mins.), strong need for sleep (9 hours, not easy to get), problems sleeping (I wake 3-8x, 30mins-4 hours every night), and need for warmth. I have been in a continual flare since a flu last autumn. My “8” treatments have got the flare under control, but it is still there, I couldn’t go without them, with them I have more energy for sports, activities and my sleep is better.
After 10 months I will be starting work in 10 days, with 2 hours a day for 4 weeks, adding the same amount in that pace, if I manage. I tested it last week with 30 mins a day, and it was hard. But my only remaining therapist (cryo/acupressure) pretends to be confident she’ll get it even better… I’m doing my best. I’m managing to increase my activities (stooping & climbing stairs has got better, table tennis longer, shorter & more active breaks). Main focus at the moment is improving my sleep, because on one of the days I will have to somehow get up and function at 7am… O.o
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