- Joined
- Sep 5, 2020
- Messages
- 3,161
- Reason
- DX FIBRO
- Diagnosis
- 02/2020
- Country
- DE
This is praps gonna be a bit bloggy. I think I'm trying to show how I'm not giving up, altho things are getting worse at the moment. And also asking if anyone has any ideas on this how I can move even better or otherwise make my life easier, whilst still ... good-humoured, accepting, adapting, adjusting and still taking on all challenges and resistance.
Symptoms:
I'm also once again not sure how to describe my new symptoms, probably now falls in the realm of "fatigue", but a bit different to the 11 forms of fatigue I've once listed. In this case the brain fog is sometimes more in a sense, sometimes less, but it doesn't exactly dull my cognition much, it's just slower, needs breaks. So my inner energy is there most of the time. But my limbs, legs more than arms, Aching quite a lot, are just not able to move much. Sort of a new combination of Ache, exhaustion and stiffness(?). And when I try I'm panting like in the olden days, like last year before acupressure got my body set up pretty well (at 40% activity). And also when I get up too quickly and don't "unfold", the bones on the top outside of my feet somehow crack (can anyone describe that better?) and then hurt if I get up too quick, which then takes 5' to stop hurting. (The throwing technique I describe below helps prevent that, not sure how/why.)
I went to a service with my wife this evening, had to put my head in her lap after 15' and cycled home after another 15' - only stayed that long because it was so inspiringly brilliant (for a change
). (I knew I wouldn't last long, I'd actually calculated on managing 20', which seems the limit.)
(To recap all sfx: the fatigue, Ache & stiffness comes with walking slowly or shuffling, breathlessness, shakiness & sighing more. My body fairly often feels feverish again, but different from that of fibro/ineffective sleep, and my temperature is up 1°C (still lower than normal). Nausea fairly often when moving too quickly. Skin irritation: burning, itching, tiny pustules - sometimes for several days, sometimes in bouts, OK atm - makes me think of a belated histamine/allergic reaction, with which I have no experience, but I'll be getting that checked first thing new year.)
Talking to my GP, he shrugs his shoulders and says 'this is all new to all of us'... Wasn't thinking about reporting the jab-sfx.
I thought I might do it as a patient, but maybe not worth it at the moment yet, after 4 weeks with no improvement. But when...
Treatments:
My energy supps seem to be having absolutely no effect on these jab-symptoms, or maybe they are, but hardly noticeable.
I've increased or added most supps (except e.g. ALA) recommended by the fibro experts on jab-sfx on Health Rising.
I've been wondering whether I should stop "all" supps for a while and see what happens, or at least stop or reduce the amino acids, as they work & stop working pretty immediately. Also because they influence serotonin, and maybe the balance of serotonin and cortisol has changed. (However I only got seizures 2 days after the jab, which would support too low or high serotonin or just a "med" = jab reaction, and that's normal again.)
My acupressure has come to a limit, where the local pains are gone (or manageable with exercises & a new massage pistol for Christmas), but no further successes on things like Ache or fatigue in the last months apart from the last local pains, so I'm planning on reducing it, as it's now hard to get anywhere and be there and lying there on my back with a mask whilst she does her best is just not enough, not helping...
Changing movements:
Comparing myself to a girl I know in a wheelchair from a CoV-jab I don’t think that’d help me at the moment, as wherever I could bring myself or get brought to I wouldn’t have enough energy etc. to do anything there. So I spose I could say: Not even a wheelchair would help me. Who said fibro won’t put me in a wheelchair…? Well OK it's not fibro alone, it's the jab in combination with it.
Hmm, as I often have to use my hands/arms to place my legs somewhere it does have a touch of someone helping someone in a wheelchair, just I’m helping myself. Never seen this that much apart from people who are very severely disabled, which I spose I am, at least for a time. I think a wheelchair would only help outside at the most, but not in this cold weather, and maybe it'll be unnecessary once it gets warm again... in April or so....
Based on that 'placing of limbs', I’ve developed a new way to improve walking: Flicking my legs forward using my hands, if they are strong enough, which they usually are, I mean 10x, walking inside the flat - more walking outside probably wouldn't work. (Nordic walking sticks don’t help me, as my arms also get fatigued even more quickly then.)
I'm also using my arms more again to throw my legs and torso up after sitting on the floor, on a chair, bending etc.
I'd realized that I've been crawling around on the floor, even from room to room, or opening the door, as it's faster than getting up, and wondering how to get up quicker, without having to wait till I've unfolded.
Compared to someone ‘bed-ridden’ I’m using my own idiosyncratic ways of doing anything and everything possible instead of just giving up. The suggestion of my acupressurist that my body may need the rest of a bed is not right for me at all. My body is not offering any hope or prospect of this improving in the near future. This is not a flu which stops after 1 or 2 weeks. I only have sort of "anti-flares": a few hours sometimes where it's down and I have some energy, I think due to cortisol.
Comparing my condition now to Vujicic or Hawking, my radius also seems extremely reduced and I still I have the power of the web at my fingertips, plus I can walk a bit too, praps not as well as Vujicic, I’m not sure. Sure glad & thankful I've got my arms and legs & can use them a bit tho. But I’m a tiny little bit of hero too.
I’m putting a breakfast tray to very good use we found on the wayside a few weeks ago. As I now always need an electric blanket over me when sitting leant against my sofa, it’s hard to arrange it around my laptop on my lap so it doesn’t overheat. Increasing the leg length the laptop is now where it should be, about the height of my neck - brilliant!
As my laptops are getting even more important in my life at the moment (they were pivotal, now they're almost all-encompassing), I’m spending more time on optimizing my ‘workplace’, i.e. learning & using new browser functions, e.g. to rearrange the various "areas of ‘work’", but also re-structuring, sorting thru, archiving and deleting stuff.
Symptoms:
I'm also once again not sure how to describe my new symptoms, probably now falls in the realm of "fatigue", but a bit different to the 11 forms of fatigue I've once listed. In this case the brain fog is sometimes more in a sense, sometimes less, but it doesn't exactly dull my cognition much, it's just slower, needs breaks. So my inner energy is there most of the time. But my limbs, legs more than arms, Aching quite a lot, are just not able to move much. Sort of a new combination of Ache, exhaustion and stiffness(?). And when I try I'm panting like in the olden days, like last year before acupressure got my body set up pretty well (at 40% activity). And also when I get up too quickly and don't "unfold", the bones on the top outside of my feet somehow crack (can anyone describe that better?) and then hurt if I get up too quick, which then takes 5' to stop hurting. (The throwing technique I describe below helps prevent that, not sure how/why.)
I went to a service with my wife this evening, had to put my head in her lap after 15' and cycled home after another 15' - only stayed that long because it was so inspiringly brilliant (for a change
). (I knew I wouldn't last long, I'd actually calculated on managing 20', which seems the limit.)(To recap all sfx: the fatigue, Ache & stiffness comes with walking slowly or shuffling, breathlessness, shakiness & sighing more. My body fairly often feels feverish again, but different from that of fibro/ineffective sleep, and my temperature is up 1°C (still lower than normal). Nausea fairly often when moving too quickly. Skin irritation: burning, itching, tiny pustules - sometimes for several days, sometimes in bouts, OK atm - makes me think of a belated histamine/allergic reaction, with which I have no experience, but I'll be getting that checked first thing new year.)
Talking to my GP, he shrugs his shoulders and says 'this is all new to all of us'... Wasn't thinking about reporting the jab-sfx.
I thought I might do it as a patient, but maybe not worth it at the moment yet, after 4 weeks with no improvement. But when...
Treatments:
My energy supps seem to be having absolutely no effect on these jab-symptoms, or maybe they are, but hardly noticeable.
I've increased or added most supps (except e.g. ALA) recommended by the fibro experts on jab-sfx on Health Rising.
I've been wondering whether I should stop "all" supps for a while and see what happens, or at least stop or reduce the amino acids, as they work & stop working pretty immediately. Also because they influence serotonin, and maybe the balance of serotonin and cortisol has changed. (However I only got seizures 2 days after the jab, which would support too low or high serotonin or just a "med" = jab reaction, and that's normal again.)
My acupressure has come to a limit, where the local pains are gone (or manageable with exercises & a new massage pistol for Christmas), but no further successes on things like Ache or fatigue in the last months apart from the last local pains, so I'm planning on reducing it, as it's now hard to get anywhere and be there and lying there on my back with a mask whilst she does her best is just not enough, not helping...
Changing movements:
Comparing myself to a girl I know in a wheelchair from a CoV-jab I don’t think that’d help me at the moment, as wherever I could bring myself or get brought to I wouldn’t have enough energy etc. to do anything there. So I spose I could say: Not even a wheelchair would help me. Who said fibro won’t put me in a wheelchair…? Well OK it's not fibro alone, it's the jab in combination with it.
Hmm, as I often have to use my hands/arms to place my legs somewhere it does have a touch of someone helping someone in a wheelchair, just I’m helping myself. Never seen this that much apart from people who are very severely disabled, which I spose I am, at least for a time. I think a wheelchair would only help outside at the most, but not in this cold weather, and maybe it'll be unnecessary once it gets warm again... in April or so....
Based on that 'placing of limbs', I’ve developed a new way to improve walking: Flicking my legs forward using my hands, if they are strong enough, which they usually are, I mean 10x, walking inside the flat - more walking outside probably wouldn't work. (Nordic walking sticks don’t help me, as my arms also get fatigued even more quickly then.)
I'm also using my arms more again to throw my legs and torso up after sitting on the floor, on a chair, bending etc.
I'd realized that I've been crawling around on the floor, even from room to room, or opening the door, as it's faster than getting up, and wondering how to get up quicker, without having to wait till I've unfolded.
Compared to someone ‘bed-ridden’ I’m using my own idiosyncratic ways of doing anything and everything possible instead of just giving up. The suggestion of my acupressurist that my body may need the rest of a bed is not right for me at all. My body is not offering any hope or prospect of this improving in the near future. This is not a flu which stops after 1 or 2 weeks. I only have sort of "anti-flares": a few hours sometimes where it's down and I have some energy, I think due to cortisol.
Comparing my condition now to Vujicic or Hawking, my radius also seems extremely reduced and I still I have the power of the web at my fingertips, plus I can walk a bit too, praps not as well as Vujicic, I’m not sure. Sure glad & thankful I've got my arms and legs & can use them a bit tho. But I’m a tiny little bit of hero too.
I’m putting a breakfast tray to very good use we found on the wayside a few weeks ago. As I now always need an electric blanket over me when sitting leant against my sofa, it’s hard to arrange it around my laptop on my lap so it doesn’t overheat. Increasing the leg length the laptop is now where it should be, about the height of my neck - brilliant!
As my laptops are getting even more important in my life at the moment (they were pivotal, now they're almost all-encompassing), I’m spending more time on optimizing my ‘workplace’, i.e. learning & using new browser functions, e.g. to rearrange the various "areas of ‘work’", but also re-structuring, sorting thru, archiving and deleting stuff.
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And frantically ;-) research-searching to have a ladder to hold on to.
)
: A video which can make us angry is How To Cure Fibromyalgia by The Pain Cure Clinic, which bases its ideas on "the teachings by Dr. John Sarno MD and his diagnosis of Tension Myositis Syndrome or TMS" because it claims FM is not a medical condition, it is caused only by stress. 
