Learning to move better...?

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Sep 5, 2020
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.

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 :cool:). (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...

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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I think I'm trying to show how I'm not giving up, altho things are getting worse at the moment.
Hi JayCS,

I'm so sorry to hear that you're still struggling so many weeks after your jab. Your symptoms sound extreme and challenging, which must be leaving substantial a dent of demoralisation. Well done for being so constructive in the face of that - I think I can speak for more than myself alone in saying how inspiring you are!

My first thought, in reading what you wrote above, is how stressful this must be for you. You mentioned the possible impact of cortisol, and perhaps that's a major culprit. I think we can't underestimate the extent to which a stressor - a bad reaction to the shot in your case - can knock everything off balance. That said, perhaps the answer doesn't lie in adjusting sups or making any dramatic changes. You seemed to have found an elegantly struck balance before this - be it one with room still for further improvement - so maybe you don't need to question what you'd already achieved. That urge to find a fix can add sizably to our stress burden. Instead, it may be worth going really deep into self care on an emotional level, and trusting that your body needs time to work through this - but that it ultimately has the capacity to do so.

Looking beyond that, why not discuss this with your doctor? They may be able to draw on all sorts of observed experiences of vaccine reactions, but without that puzzle piece, they can't know that's what you need.

But I’m a tiny little bit of hero too.
You're a massive hero to me, and I'm certain to lots of people here who quietly read your words each day. Please keep keeping us posted on how you're getting on. Thank you for everything you share 🌱
Thanks a mill, Jemima! 🤩
Actually, I'm not the least stressed, I'm more relaxed than I've ever been in my life, and laughing such a lot - esp. about the absurdity of it all, but not the least gallow's humour, as well as watching on average 1-2 episodes of The Big Bang Theory a day, and I've really got to cherish the amount of self-care and time I have to enjoy all that's still working well in my body (local pains down, GI down, sleep up) as well as listen to music whenever I feel like and so much time on my hands and still so much more nice things to do at my fingertips....
The cortisol hours are eustress, not distress, in these hours it makes me "fly" a bit, which I can relish and I've learnt to control it so I don't fly too high... It's usually caused by less sleep and that is caused by having fun / carried away writing - so nothing bad about it on the surface. Just my perusing the serotonin connection.
My GP has absolutely no idea what to say, but I'll be going to the successor of my sleep lab & rehab psychiatrist on "Russian Christmas Day" and am hoping she has open eyes, heart and mind. If not I'll try get a video consultation with the predecessor, which he did offer. If not that or anyone inadvertently else, praps I should delve more into what the fibro experts on Health Rising have been recommending since April, long time since then. They will have their own websites, articles & interviews - Yeah, that's a good one, thanks for putting me on to that! And for everything you do for all of us, too! 🤗
The Fibro/vax experts cited: Dr. Bela Chheda MD (Mountain View, California), Dr. Eleanor Stein MD (Calgary, Canada), Theresa Dowell FNP (Flagstaff, Arizona), Dr. Natelson MD (New York, New York), plus Dr. Nancy Klimas who seems to be the guru for the others. Anyone know these? Let's see what I can find...
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You are like distilled kick-ass, JayCS ✊

I'd give you a hug if we were real-world buddies (or in the same country!) But instead I'll just send strength and wish you well - the ASAP variety!
The approach and attitude you have is very impressive Jay. It's a lot to ask of someone who is suffering as such, telling their story in detailed posts. I feel this compassion, proactivity and humour may be the difference between one being a victim or a survivor. It's given me motivation reading your posts on a difficult day.

Regarding movement, some of what I've read on the Alexander technique in the past has been helpful, such as standing up/ sitting down or easing back spasms. Some of what I remember from Chi Quong has also been helpful although I can't manage much, I remind myself to attempt everyday tasks with that kind of gentle flow. We can still suprise ourselves with humour. I ended up in tears of laughter for the first time in a long while accidentally signing a few Christmas cards with 'Happy Birthday'.
Thanks, Badger!!

Seeming to think & do things in a different way to others often makes me unconfident about whether I'm getting on people's nerves talking about it, so I need you folks to unworry me. I don't mind being first in the line to test the ice (on real life lakes too), but it's a bit scary. Not that I believe I'm leading I spose, that's part of the unconfidence, it's just the feeling of being alone with these weird symptoms. Typical fibro I spose! :) 🙄 And frantically ;-) research-searching to have a ladder to hold on to.

Thanks also for your ideas. Alexander technique has never seemed attractive to me, so I'm using the most attractive way, videos specific to my challenges, to get my head round it. Alexander technique is actually pretty similar to the way i'm thinking and trying things, so whether it helps or not, your suggestion is definitely spot-on! I started with "getting up". And now "getting up off the floor" (e.g. Morgan Rysdan) is getting closer.

(Also btw using the browser opera's option to pop the video up while writing)
Youtube's also reminded me of the similar /related Feldenkrais (looking at videos by Taro Iwamoto). which has integrated Alexander technique with 'martial arts, psychology and biomechanics'. For these challenges, A.t. looks more relevant, cos Feldenkrais seems to need much more energy (e.g. Spiral to stand, spiral to sit).

I found other interesting vids I'll separate out in a post below..., but...

OK, I didn't find anything here, but I'll keep trying - maybe along the lines of Alexander technique, Feldenkrais. Qigong was never my favourite either, as slow movements increase my pain, but there's always a time to turn over a stone a 2nd or 3rd time if we haven't found what we are looking for yet.
(In real life my experience when looking for things I've lost.... is: 70% 1) It's where it's sposed to be, but displaced by a very short distance (e.g. something is covering it up), the rest 2) think where I had it last and follow, then return to 1, 3) turn over and tidy up everything I've always been needing to anyway, then return to 1. And there's a 4th one I can't remember...)
Videos - my thoughts and a few recommendations:

Now I want to know how to move when stiff. Youtube brings me to Bob & Brad Top 3 Things you should try if you have Fibromyalgia (Based on Science), 2017, recommending
1) mainly"The Fibromyalgia Workbook" by Adrian Louw, see my recent book thread (i.e. education to get anxiety down'), then
2) aerobic activity, like a brisk walk, and
3) at the end try to sell us an infrared pad 🙄.
So: Sobering, don't bother looking yourself.

That takes me to a similar message in the video Body Stiffness in CFS/Fibromyalgia - Just Another Distraction Trick by RecoverFromCFS (Moscow), where he says "It's just another distraction from threatening emotions. It is not a sign of pathology." Again in answer to him: I can ignore my stiffness, no problem, but I then regularly injure my feet and have more than once stumbled at the roadside in traffic: not helping! Similar in his [CFS/Fibromyalgia Recovery] Stiffness, Pain, Brain Fog), but dead right in the acceptance that it's not a threat, fear unnecessary. But not right for my type of FM in his 'push thru' attitude and sort of pushing it thru on all of us...
Still interesting to grapple with.

Feldenkrais Demonstration for Fibromyalgia Patient by Centre 4 Health (AUS) - this video is really worth watching firstly for how Ren describes her symptoms and experience with her neurologist (UK), but also to see how gentle, listening & understanding physios should be working with us, similar to the way my osteopath worked with me. Lovely & soothing just to watch. However if I'd've stayed with my osteopath, I wdntve got a s far as I got with my acupressurist.

Another video sort-of-recommendation (but you can just read the following): 8 Types of Fibromyalgia Pain by Nic Baker, 2016. He talks about each of us having a different set of 3 or more of the following pain types ('knots'), which I can go along with:
A. Too much of something 1. Floating pain, 2. Heavy pain with gut issues, 3. Worse with stress or sitting, 4. Worse in morning or from injuries,
B. Too little of something: 5. Low energy and back pain, 6. Hot at night with irritability, 7. Feels like menopause, 8. Winter is coming.
Looking into these I'd prefer to call "1. floating pain" local pains alternating between parts of the body, due to invisible 'injury' & 'harm', 2-5 I'd split up into 2 types each, no idea why he lumps them into one. I wouldn't've called the "too low" ones apart from back pain 'pain', so these come extra for me. And yes I do have all these 12 and a lot more. (Not sure about menopause, but something analogue. 😼)
I myself divide my pains into two categories and divide up the second one into about 14, which I've pretty much not cured, but "solved":
A. The Ache, which I've only very partly managed to improve with supps and
B. the local pains, which are almost gone from acupressure, exercising/stretching & supps: 1. lying, 2. standing, 3. loins, 4. sitting, 5. arms up, 6. neck, 7. stiffness, 8. walking, 9. cycling, 10. bladder, 11+12: GI, 13: talking, 14: mask-wearing.

I've often heard Brits asking & recommending Chris Jenner from the London Pain Clinic, as the NHS forces people to look for private alternatives, didn't realize there's a 13' video (Feb21) by them tho, called "How you can treat and manage Fibromyalgia". Had to laugh that he is referring to the FM/a test tho, altho it hasn't much evidence for it! Also very med based (Brits esp. seem to need that...)
So NOT recommended in my eyes.
As a contrast I much prefer the vids I usually recommend:
Fibromyalgia: It's Real, It's Manageable, What You Can Do by UCTV and
Understanding how to manage fibromyalgia - Rachel Lynch by Arthritis Ireland,
plus ZDoggMD A Real Doctor Watches Lady Gaga's 5 Foot 2 | Fame, Fortune, and Fibromyalgia,
9 Reasons To Blame The Recession on Fibromyalgia (Thanks Clickbait Generator) | Incident Report 094 and
praps The Truth About Managing Chronic Pain (w/Dr. Rachel Zoffness).

Red flag :🔴: 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. ✊Stop me, someone!

This is another really good one tho: The 3 Stages of recovery in ME/CFS/Fibromyalgia by The Optimum Health Clinic (also London, like Jenner, seems trustworthy). Don't be put off by the word "recovery" here, it's not meant at all in the sense of cure. Main message is that what helps will change, and that's true for me.
First in the "crash stage" exercise will be a problem or even impossible, total rest is necessary.
The "Tired and wired" stage 2 they say is when we stop being able to sleep, well I had that in my crash stage too... When we've rested and can now start to do a bit again, we may get overstimulated, so it's nec. to put sleep & relaxation & pacing first and foremost
Stage 3: We may have to stop doing things from stage 1 & 2 to see where we are, and then look for new things.
Brilliant also saying that these stages may take years, months, and after a flare: days.
(Maladaptive stress response, overstimulated nervous system and mitochondrial function are their theoretical basis, but their offer at the end how they might be able to help seems recommendable to me.)
Their 2nd one, also 2016, is also OK: Bodily systems and recovery from ME/CFS/Fibromyalgia, but it bases on understanding and thus reducing overstimulation, tightness and being able to heal better. Mitochondrial malfunction to create fatigue delayed praps by even 2 days (post exertional malaise they mean). Unfortunately they follow that by saying that understanding this can take our feeling of mystery. That's once again an overexuberant researcher talking...
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Whilst writing the above, my wife came into my room, having just got up, overflown with tears, sobbing.
I was pretty certain someone had died.
Turns out she was just so sad about my state at the moment, the way I'm now adapting my movements again and my comparison with people in a wheelchair. So while admiring my fighting spirit & good-humour, and wishing I could jump around and play table tennis and get on her nerves again, she doesn't want to disregard adapting with any kind of aids possible and also can't always managed to hide her emotions (I know she talks with people about this/her side of coping).
I comforted her as well as I could, then threw over her coffee by mistake she'd just put on my breakfast try next to my laptop, so we had a bit of distraction :rolleyes: .
Whilst working on my brownred carpet, she said that she now often wonders if I should have got the jab, and whether I think this too. She 's asked that before, and as always I replied: NO - I made the informed decision for "a" reason, and that reason hasn't changed.
When she asks whether I'm still considering taking a 2nd one, I reply: I'm not in a position to think about this much anymore. But my guesstimate is that I'll need to recover for as long as I'm in this state (I don't really feel it's right to call it a flare), before I'm able to decide what to do next...
She asks all the time how she can help, but frustratingly for her, I can do everything that's possible myself. But so she can do something I said we can try the new massage gun on my Achey spots, altho I'm not sure it'll help me, but praps her...

BTW as I've said elsewhere - my wife was the one who saw my stiffness (and pushed/"took me" to rheumatology to get the diagnosis).
Behind my sometimes very fluid seeming movements she also sees what nobody else sees: I've been using a lot of tricks to move anyway: Placing, flicking & throwing myself or parts of myself, also for momentum, swinging, turning, spiralling, levering, bouncing or twisting myself off things, twist-falling, breakfalling, rolling, keeping loose, using pivots, and deliberately overbalancing and then counterbalancing that, hardly ever grunting, trying to keep my panting down by deep breaths.
(Only when I force myself to get my trousers, socks and shoes off standing, however long it takes, does it show.)
Or I'm developing walking in a suave slow way so it looks as if I'm just cool, by leaning into each step (and "resting"), swinging my arms a bit.
Doing all this more than in normal vids, probably more like the elegance of martial arts movements. So spose I've been becoming an expert already and should be making videos myself...
Just that I don't feel like an expert, since the challenges keep growing...
When she looks at me after I've used one of these techniques with that squinting: I-SEE-you're-faking-it-can't-fool-me-look and saying "like yeah...", I add a "ta-daaaa!" with arms in the air... :LOL:
Ahh, I've now found a brililant one I can learn from: How to get up from the floor (after a fall) - McGyver style - ah, my hero. (I was hoping she'd use all the books in the book tower in #8, at least in an outtake!
This was quite OK too, "Stand up without effort- a Feldenkrais movement" (overbalancing using head forwards and arms up).
Funny thing is, when my wife wants to help me get up off the floor, I sometimes let her to humour her (so she feels she can do something to help me): Actually it hurts more, takes longer and has more chance of injury, so I have to brace myself so that doesn't happen and can only allow her to do it when I don't need it in the least....!! :ROFLMAO:
Going on to New Year, youtube suggested bloopers from the series "Friends" - "Ross playing the bagpipe bloopers HILARIOUS" to give me a great laugh... (being a musician...)
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OK, whilst I'm wondering if I need to increase my cortisol, by decreasing some of the supps that increase serotonin...

... I'm following Klimas' recommendation to take ALA (alpha lipoic acid, not alpha linolenic acid) to alleviate jab-sfx.
Something @Jemima's had some success with, so I've always wondered. Also it might support my cardiovascular stuff.
Ordering was a challenge once again so I'm glad I'm thru with researching most supps.
Turns out that ALA has an R+ and an S- enantiomer (some say +isomer and -isomer).
Some products claim, but following that up: studies have shown that the R+ is much more bioavailable.
However most ALA-products are either S- or a mix of these, since the R+ form is pretty instable - again some products claim.
Now I've managed to find quite a few R+-ALA products, stabilized by sodium.
The price range in these were immense, from 1€/g to 6€/g. All with vegan capsules and no
The cheapest also contains calcium carbonate, which I'm not sure on. I've decided on a product without.
Also to save postage, I'm adding a pycnogel (pine tree bark, OPC) I've had on my list for a while.

Next up I want to see if there's any supps I can stop or reduce. Very thin ice if I look at what they're for.
I think reducing the (overdose of) passiflora was good tonight, as I only had 2 sleep breaks (50'), that's brilliant for me, and the 2nd was at 5:00, too late to take the last pill...
+1 for the Big Bang Theory, funny show, the one were Howard makes a toilet for the I.S.S. made me giggle. I tried Qui Gong during a pain management course in 2007, it looked interesting but I could only manage a couple of reps with some of the movements. In the time since during the day I may have used some of the stretches to ease stiffness. Early last year I decided to do more along with YouTube videos to see if it would help. I did feel nicely warmed up after the first session which was strange. It hadn't felt like that since the first session at the pain clinic. Unfortunately after doing about 6 reps of 5 exercises for 4 days my left shoulder flared and was fairly painful for several months. Although not as bad it's still tender and one of the frustrating setbacks of fibro. Since I need to stretch at some point during day, I'll do maybe one move two or three times a day.

It can be very difficult trying to work around the burning muscle fatigue and surprising just how quickly they can get tired. Simple tasks like brushing our teeth can become too difficult to do thoroughly and quite upsetting among all the others that hold us back. We can only try to work around it as best we can and take heart in our will to live on. It's difficult for loved ones to see us going through this, but it may also give them strength to see us face suffering with courage and kindness.
Thank you so much for all of these:

Red flag :🔴: 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. ✊Stop me, someone!

Ahh, I've now found a brililant one I can learn from: How to get up from the floor (after a fall) - McGyver style - ah, my hero.

Going on to New Year, youtube suggested bloopers from the series "Friends" - "Ross playing the bagpipe bloopers HILARIOUS" to give me a great laugh...

Despite the seriousness of what you're writing about, you still manage to make me snort and chuckle, raising an eyebrow from my fella and a strange look from the dog!

Very interesting approach to try to up the cortisol - from what you said before, it does make fantastic sense. I hope you find ways to tweak as planned and that it helps!
Hope you do not mind me replying too. I also have a lot of respect for someone who takes it on the chin and is proactive. So many people who get ill just moan about it, fat lot of good that is. If anything it just ruins their marriage or friendships when people get sick of hearing it all the time and then becoming nothing more than their illness, with no personality or anything else. I often sit there listening to people going on about their various illnesses thinking to myself, if only you knew, never once have I told them about how this is for me. Why would I? If I do they do not understand, or try to give daft advice, as if I cannot think and make sensible decisions or do not know the facts as well as them. It is great that we can join together here and support each other and maybe also educate each other here. We are equals here. When you talk to someone in the real world about being ill they always seem to talk to you as if they are superior and must know more than you if they don't have it too. The other day a friend of mine, who lives abroad, emailed me and said well never mind, you can easily cure fibromyalagia. Really? First I have heard of it. I felt as if he had dismissed the whole thing. He is constantly moaning about his kidneys not functioning properly. And going back and forth to his consultant to test it - costing a lot of time and money each time - yet he won't drink more water, the one thing that could help him with it. At least we in this forum are looking for ways to improve how things are for ourselves. Not just being victims.
That is why I have stuck with this forum for so long. People who come here only to complain and never even try any of the things that would help them don't end up lasting very long here. Some people will put up a brick wall against all suggestions, saying this and that are all impossible, but without trying them. These are people we really cannot help very much if at all, although occasionally someone starts out like that and then starts to work to help themselves.

I think it's fine to have a forum somewhere where people like that can just go and complain endlessly if that is what they want to do. But that is not what we are about here. Of course, venting and complaining is sometimes appropriate and even necessary, so we have a place for it and encourage people to use it. But our purpose is to help ourselves and each other, spread information, and learn, and I think we do a pretty admirable job of that on this forum, and it is all thanks to our dedicated members. My thanks to all of you.
Ive been on other health forums and they all seem to be the same in this way. Some go just to complain and moan when bored and at a loose end. Others only want advice and opinions to save them trying things and spending money on something or researching things for themselves. They think it;s an alternative to googling and faster. Then there are the nice genuine interesting fair ones who give as well as take. And don't only go on now and then when bored, they stick with it and often put themselves out for someone out of kindness to those struggling. Ive got to the point where I cannot trust doctors or nurses to understand or get it right and rely on my own research, often having to lead the way when talking to them. Its exhausting and time consuming but its better than letting them make more and more mistakes at my expense. When I first became ill with all of this my doctor said he had no idea of what was wrong with me and just waved it all aside as it to say so what, just live with it. I had to push and push for him to do something. He then offered to send me to a chest specialist because I have small lungs, even though they were not causing a problem and had nothing to do with it, totally ignoring all of my actual symptoms. I RELY ON MYSELF NOW.
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Forums all have these things in common because...well, because they are run by and attended by people! And people will be people anywhere. :)

I have also learned to rely in large part on myself, because doctors did not help me very much either. But the good thing is that when you realize that you have to rely on yourself, you start looking for the ways in which you can help yourself since it is up to you. And when I did that, it made all the difference in my life.

And that is why I wrote my post of advice on how to manage fibromyalgia. I'm going to make another plug for that post here. Not because it's some kind of genius or has all the answers! But because if a person starts out trying things like what is suggested there, just gets started, it will put you on a path that may very well (and will, if you keep at it) lead you to the right unique combination of things that you need to do for you, in order to feel better.
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