JayCS’s Fibro Blog

Symptoms & Treatments
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Great night, very hard Day 3… OK, not day, got tough from midday on, better now at 7pm.
Woke up as often as ever, praps 10x, 5x I just turned over, the other 5x I got up but kept it to 2’, no heat or cold necessary, (almost) no pain, no unrest… The last half hour I did autogenic training again.
So felt great, got quite some stuff done before going off to work, everything under control & fun. Then after 1 hour of talking to people I was still OK, despite the mask (breathed out of the window in between). But I forgot to drink from 8 to 1 & then I realized I need oxygen, opened the window, but someone wanted to talk to me, took me by surprise, I closed the window, because it was noisy outside, and put my mask back on. Asked how I am in a way that I thought/felt he meant an 8’ version, but then started another topic another 8’. I think the problem was I’d got over my limit before already. Because it was a time where I thought I was prepared to talk and had put the time aside. So it shouldn’t have been a surprise. Wrong attitude.
Cryo & ear-acupuncture didn’t help much, then dentist, not much, but one short sharp pain because of an X-ray. And after that just knackered. Just about managed 4 TT games. (My benchmark…) And now just resting with short activities.
To Do: Lie down before & after set intense talk-time.
Leave a 4th hoodie at work, just in case. (Forgot my 3rd hoodie today…).
Alarm for drinking at work.

This is not a piece of cake: Anything additional like dentist needs to be allowed for.

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Yes - this is very good. Letting go of things that have simmered and continued to bother is as important as not worrying about what is to come (or may come). I will think on this - THANK YOU
The fear of heights is something my hubby experiences. Your example about this could be helpful to him. I will think of how to apply that to my problems/worries.
I was not a worrier the first 39 years of my life. Then, I experienced divorce, 1 yr later meeting my present hubby, bought a house, became a step-mom (SD’s mother tried to ruin my life - awful - so glad not to deal with that any longer!!!). Anyway, when I remarried, I started having panic attacks. It was then that I learned that ALL stress - both GOOD and BAD - is STRESS. Then I started having the awful aches of fibromyalgia, along with degenerative discs in my neck, hand problems (very bad for a pianist - which was the LOVE of my life). Loosing my abilities as a pianist, wrecked me.
I now concentrate on the things I have to be grateful for. My faith & family (and doctors & meds) will see me through. Also - connecting with others on this site gives me hope & ways to cope (LOL I sound like Dr Suess!) :blue_heart:

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It sounds like you overdid it at work, JayCS. That often happens to me, even working from home. It is great that you are aware of your limits, and that you learn from each work situation. Wishing you better days ahead!!! :slightly_smiling_face:

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Day 4
Went to bed kaput, but OK, cold showered at 0, slept well again with 1 break till 6, then dreamt at work people weren’t doing things as they should, playing around, I was planless. Wrote that down, which made it worse (I thought it’s sposed to help?). Then drowsily imagined things going right, kicking a goal from a pass and autogenic training, which helped a little bit. I like the goal. Reminds me of surprising “old age” ;-)-successes playing football with colleagues up to 5 years ago (and the ill-feeling I had the days after tho too, and usually getting 5-10 injuries, some for several months). But I spose I can still count the sleep as 9:15h (= +15) somehow…
9am Really stressed getting to work, bad time management, probably due to starting writing the above for a bit of self-comfort after feeling yucky from the dream.
10am But a bit of work done, then deep breathing, yoga and the breath-hold exercise, now I feel better.
Just learnt what I was thinking all the time: The breath-holding (slightly slower? version) is influenced by yoga

here are a few details

It “is one of the most basic techniques in pranayamas you can do and there are 8 types of pranayamas” as I read in a comment there. At last!..
OK, I’m finding it’s not so easy, pranayamas means something like the “art of breathing” in Hindu yoga (or Buddhist Tomma), of which of course there are a whole lot of types, 8 is a simplification. And It’s an ideological controversy: “Real yoga” practitioners claim Wim Hof’s breath-holding is recklessly simplified. But when I read the real yoga stuff with postures I can’t hold, year-long training before getting to breathing-exercises like this, I just have to say: I need this now, desperately!

OK coming home from work at 12:30 my Ache was 6, or maybe 7 (if crying inside counts). Also dull pain in elbows and wrists: cream/heat. Tried cold water just on my arms for 2’, suggestion from cryo. Was OK, for starters, but then a cold shower 2x1’ helped get it down to 3. Then not doing much, eating sitting & playing cards, then lying down & writing. Then tried table tennis, which was hard from the start, had to stop after 3 games, Ache was at 6/7 again. Then laid down again reading & writing since then. Not going anywhere, not to my granddaughter, where I’d’ve wanted to go, not even 20’ shopping, nothing.
Just hoping that cryo plus the long acupressure tomorrow will get this down again. :unamused:
9:30pm: Better at last, after eating bad things like chocolate and cheese and playing cards - gone down from 6 to 2 in the last hour. :slight_smile: G’dnite…

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I’m really not sure if I overdid it at work or if working at all is overdoing it. :weary:

I haven’t started work because my body feels up to it, but because I have to make a move after the luxury of 10 months of sick leave. Either slowly try or retirement, at least for 1-2 years. My body now feels up to having a good life without work, with not much pain and tolerable Ache. And the last month showed that doing things from home 2h/d is OK/fun. And some people (one good doc, my wife) are saying they can’t imagine me in retirement yet, I have too much energy, am too young, enjoyed working too much.
But seriously: Where did I overdo it yesterday and/or today? I should be working 2h/d. What luxury! True, I am at work 9:00-12:00. (Getting there and back by bike and train - 30’ - is a bit stressy, but not much.) But in that time I “worked” for 1h and chatted for praps 40’, the rest of the time I did yoga & breathing exercises, lied down or just pottered around a bit, often outside or next to an open window. And what I did in that 1h was really only 60% of the energy that I usually have to put in to 1h of work.
And I also don’t have the slightest feeling I’m going to get used to this in any way.
The only chance I have is as you say to learn and keep on my toes the whole time.
My wife responded it sounds like I am under pressure - yes, praps: but only under pressure to find out how to keep the Ache down. She suggested doing something else less, e.g. table tennis. But I need that, not just because all my docs say I *have to keep my sports going, against the fibro- and also the cardiovascular stuff, but also because I need the movement and the fresh air, using my energy bursts interspaced with generous yoga/leg up-breaks. I can’t see what I can do less. Apart from what’s happened today: no social contacts after. And I haven’t got the energy to make music or sing altho I have my singing/music production lesson tomorrow.
And good conditions today: it’s not too cold, remembered my 3rd hoodie, didn’t get wet, drank & ate & slept & breathed & exercised enough… No anxiety, only 10’ of stress, kept mask-time down… :confounded: The only good thing is sleeping “better”, but that’s not helping my day at all…
My wife did suddenly get affected, when she realized the people she has to do with have to start work with 4h/d, and I’m not even doing at all well with 2… :man_with_probing_cane:

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Sorry if I’m being pushy here, but even if you don’t think you’ve got the self-control for an elimination diet - have you tried psyllium when you have a flare? After never having heard of it before a year ago, I’m surprised that I’ve been recommended it 3x by 2 docs, 1 nutritionist since then and it also helps very well. Also if you sometimes/ever have C it works there too: Put it in a lot of water if you have C and only a few sips if you have D…

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Day 5
Another challenging night…: Cold shower at 10pm, that worked for 3h, another at 1:30…
Up for 1h25 (), so I only managed 8h20, but happy & a good start, doing everything focussed and in time.
New tricks, in order of importance:

  1. First target: 0 stress all day: Successful! I’ll have to provide 5’ more for everything.
  2. I’ve decided to work less at work and if necessary do more at home. I’d thought I was clever to want to do all work at work and none at home, but I need more breaks, meaning: not talking either. Today I did “light work” for 50’, got feverish again, then got it down with yoga, breathing, making music! (Ha!), then worked another 25’.
  3. My 3rd hoodie is staying at work, just in case. I wore my 4th almost like a kilt :wink: . Knotted the (thickly padded) sleeves double, so it doesn’t slip down while cycling or walking. Then reversed them to the back so the main ‘kilty’ part protects the thighs against cold - & also rain, a great side effect. Good for cycling, waiting and at work. Even next to open windows, which is good for getting more oxygen with & without mask. Or if my back/behind is cold I can reverse it again. Now I’ve got my mobile cushion I’ve often needed on hard chairs too! So up to now I don’t feel the need for any hot pad at all. I’m sure the cryo+acupressure & cold showering is helping my resistance to the cold too.
  4. I get woken up at around 5:30am by the very loud pulling up of the outside-blinds of a neighbour. My wife suggested :wink: hanging a banner outside the window saying: “Please pull your blinds up quietly!” In half-sleep I was considering this, but decided since Mme. Up-Above hacks her floor with her army boots/high-heels/clogs or whatever shortly after, I just have to make it a habit to put my ear plugs in shortly beforehand when I wake up anyway, from 4:30/5:00 on. (Politely telling her she walks around noisily in the mornings didn’t help.)
  5. Altho potatoes are good (juice or a small ungreen one raw) against hyperacidity, eating more than “4” in one go is giving me a specific kind of stomach burning, again disrupting sleep: so less now.
6. Changing masks more easily

Since I have a loop scarf on all the time anyway I am using that more to prevent stress getting one of my masks on. But I’m also strapping one of my masks on my sleeve, bottom down while outside & cycling, so it doesn’t get wet and I can get it on again quickly, so I usually don’t have to use the loop scarf. (I use a thinner mask on train because there is little contact more distance there, and a thick one at work).

I’ve got feverish again in the evening, and tired & everything, but it’s OK, and at least I got some music done to learn something about singing & production in the ‘singing’ lesson. Table tennis was rained off/out…
9pm - OK isn’t quite true, had to shed 2 tears, still feels too much in between, desperately need to sleep…

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I have not tried psyllium, JayCS. Thank you for the tip! :smiley:

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It does sound like you have a lot of energy, which you are definitely going to need, JCS. It also sounds like there is a lot to get used to, including the commute. I think you may not have the energy for music for a while, until you become accustom to your new routine. I find that I only have so much energy - when it is gone, it is gone until I recharge my battery & try again the next day. Sometimes that’s the best we can do. Just listen to your body. It will tell you when you need to rest. Best of luck to you - It sounds like your co-workers have missed you & are glad to have you back! :grinning:
I didn’t understand the last sentence - Who realized people had to start back at 4 hrs and you are doing 2?

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Yep - I’ll have to handle the commuting by providing for self-caring 5-10’ more for everything…
I’m doubting that I’ll get accustomed to this in any way… :frowning: . 50’ of talking means needing a long break. That’s the only way I seem to be able to work. But that’s not going to be possible. My hope is that the continuing acupressure and praps acupuncture can make me stronger.
Today a colleague suggested that I’ll just have to suppress it (she means the pain) by forgetting it while working and then having to use the rest of the day to reconvalesce.
I couldn’t answer properly because I couldn’t get my head round it. But the answer is: I need to reconvalesce after each hour of work. And it’s not pain that’s the problem, it’s feeling dead sick. And work alone cannot suppress it, unless I get into positive stress (we say ‘eustress’) which will result in long periods of sick leave after 2 days without problems… Yeah, this was the first time I didn’t manage to explain the problem altho I’ve done it often enough. But we’re getting there… ;-/

Thanks for asking, AM - I’ve edited ‘my wife’ above…

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Suppress it??? Forget it??? I guess to someone not living in chronic pain, maybe it makes sense. But, it makes no sense to me. I think that most people don’t have a clue about the suffering that comes with FMS and the host of other conditions that come along with it.
I’m really sorry that work is difficult right now, but it sounds like you are finding your way to your new normal and giving yourself time to recover. Hang in there my friend! :blue_heart:

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53

Day 6 (x)
Slept 9h25 (=-30’ this week!) from 10 to 8 with half an hour break incl. cold showering at 5 (and putting ear plugs in in time…) after a

dream

Where I saw a flying double decker over a sports field and another shabby one standing on the field, then the flying one did 3 elegant somersaults and apparently deliberately crashed on the standing one, back down.

which suggests I’m falling into in a sad/depressive phase. Although I’ve generally been a very happy person in the last 5 years, despite the FMS, this happened several times in the last year - mainly when I got the fibro-diagnosis in Feb (altho I’d been surprised it hadn’t come earlier) and in June when we discovered I’d got hyperlipidemia as well…
But each time it didn’t even take a week to get happy again. And in this new case I can always opt out. Everything I’m learning while trying to go to work will help me whatever choice I make. It’s my life. That reminds me of

music I medicated myself with as a teen:

Starting with Pink Floyd’s Shine On You Crazy Diamond to express the sadness, get energy back up and going on to Billy Joel’s My Life

Also a (European) robin chirped his intricate ornaments on a tree directly in front of my window just now, despite the cold rainy grey day - I’m not taking that as coincidence: I’m a fan and he’s talking to me. He’s not just a "gardners’ " friend and a Christ(mas) bird. (My wife can always hear it’s a robin, I had to take my binoculars…). …Shine On You Crazy Diamond - ahh - Floyd are talking to me too?.. Feeling ill… Wife just (tearfully) remindered if work doesn’t work that’s OK (she had originally pushed me to work). I’ve now tried curling up with double heat (I still prefer my hot water bottle or spelt cushions to my new heating pad), but that’s not really helping, so I’ll try the opposite now: exercising, see how I go.
OK, not that much exercise, but still slowly feeling not quite as sick.
2pm Cold water on my arms helped. 4pm So did fresh air & surprisingly 4 games of table tennis

even though two officials told us we needed to wear masks

(one of our tables is on a playground near the town centre - but we wouldn’t have thought, being alone there; oh well, we’ll go to the other table tomorrow; just looked up: they were wrong…)

6pm: Looked into the book Full Catastrophe Living. Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. The Program of the Stress Reduction Clinic at the University of Massachusetts Medical Center by Jon Kabat-Zinn. And listened to a guided meditation by the recognised author on youtube. But disappointed, because it’ll only be helpful for someone who doesn’t know / practice mindfulness, meditation etc. I’d already been disappointed by Peter Levine’s Freedom from Pain, from which I only gleaned one exercise, unimportant compared to all the other stuff I use.
8pm: Still feeling sick, and tired, but not as depressed anymore.
On Monday I’ll carry on with stress at zero and keep work down to a minimal level, i.e. similar to Friday: 20’, then a 40’ break, then 50’ work and off, “reconvalescing”/ recovering with breathing & yoga. Not sure if I can get the intensity of the 50’ down or break it up into 2x25’, but I’ll try both…

(x) I’m continuing the numbering over the weekend because I’m working at recovering from work the whole time. I wish it were a real break and my body could forget yesterday, but it can’t.

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Day 7 - fresh-start-day!

New & good tonight: I showered ‘hot’ first 40’’, then cold 40’’ - and slept for 4h without a break! Haven’t for a year!
Forgot to take my cardio-pills and Sinupret yesterday: then the latter was praps what’s stuffed my nose up since yesterday afternoon, and not the cold washing of my arms…
A second fresh start: 7’-workout got 1st stress down. Yoga 2nd stress. Table tennis: 5 games!

Working-Plan: Limit to 20’!

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JCS, don’t you hate it when you forget to take meds or supplements that help you get through the day?!
Congrats on 4 undisturbed hours of sleep! You rock!!!
BTW your wife rocks, too!!! She sounds like a precious, caring lady.

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Day 8 - the carousel is turning again

Sleep: 2x showering warm 30’’ cold 40’’, 2x 3h sleep without a break, 9h10. → cream dry hands.
Slightly stressing from 6am on, but must’ve slept too.

Stressing (a bit) due to knowing that I can only manage if I keep on my toes. → workout (reminds me to do my back exercises first!!) → feverish & shaky → fresh air or breath-hold? Cycling 10’ wasn’t enough.
Keeping on my toes: Feels like jumping on to the turning carousel and jumping off again. And it’s turning fast… it’s whirling. … - I need a better image for this. Any ideas? It used to help me to think of my many tasks as plates spinning on rods and remembering not to run around to all of them, but to look first which of them is almost falling. If this still works: now it’s only one plate.
Wrong leaving home time in my stress-head (what a waste of stress): ten to instead of ten past.
Bloaty a bit: from potatoes or probiotic Symbioflor2?
Feet hurting quite a bit → try insoles again.
My first real work today and I feel sick → breath-holding → seems better. Stage fright → Here and Now!
Ah, sun’s come out… illuminating the heaps of yellow & brown. :slight_smile:
Work: only 5’, long break, then 40’, kept it down to minimal effort & stress-free, all went well, good feedback, went home almost straight after that. Less is just not possible. Still feeling flu-sick & Ache all over, pain in right elbow, knee and foot, still feel like crying, so 7.
1pm Cryo: Good in, better for 10’ after that. Cryo-PT said it’s the wet changy weather and the full moon over the weekend - may be for others, but not for me - and wouldn’t explain why Sunday was just about OK.
2pm 2 seizures. Table tennis: 4 games, without effort, stooping to picking up or even counting. My mate did what he could to make it easier for me & cheer me up (not playing worse of course, that’d be silly). Still Ache all over, 5/6. Curling up again. Old ‘record’ on for comfort.

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JCS, my thoughts are that (maybe from the added stress of working again), you are experiencing a BIG fibromyalgia flare (I’m sure I’m stating the obvious). The only thing that helps me with these is REST - for both mind and body.
The seizures are disturbing to hear about. Do you contact your doctor when this happens?
Remember, we must be gentle with ourselves. Hang in there!!!

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Thx AM… yes, I spose it seems obvious, but I do need it said out loud.
I’ve never really had much of a single “flare” in that sense, because I’ve never had good days since about a year ago, it was just one long flare. Better days started with 4 in June when cryo first helped. And after that it was only with the help of cryo now with the acupressure that gave some good hours or days, which progressed in a long slow process right up to now starting work.
And still the good things I’ve built up remain: My pains are at a minimum, my sleep is great, my oxygen is good. But this day-long Ache & ‘Illness’ is taking me back months, when I also had all the other things. Or rather has a new quality, because I haven’t got any of the others, but am still knocked out. It also shows that it’s not the other things, not the sleep etc… I’ve managed to take the work-time & stress down to an absolute minimum today, to no avail. So I guess you’re right, I haven’t got a choice and will stay home for at least tomorrow. I haven’t got any set times for 2 days, and have cancelled / given notice for everything else.
I also wouldn’t know what else my body needs now - breath-holding and cryo hardly worked. But I can try again now - when else…
I’m also considering consulting my rehab doc. I don’t want to chicken out of this whole thing too early, but I wouldn’t have dreamt not managing the first 3 days without.
The seizures aren’t much of a problem, because I never fall over or anything big, it’s just thoughts & speaking that goes wonky. But I did need to stop cycling and wait with eyes closed, which I never usually do. So - a big one for me, almost like the ones I got from Tilidine, a bit scary. So like you’re implying I should at least talk with my rehab doc about them too, cos he has good ideas. My neurologist doesn’t need to know, unless it keeps on.
(My son just asked me on the phone what I feel the trigger for the … flare … is - I really don’t know! - apart from work - but what there? I can still work from home much better - I think - praps I should try that tomorrow.)

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:slight_smile: I’m lucky that I don’t notice the difference when I forget my cardio-stuff & don’t have any other big meds any more. Sinupret seems to make a difference, even tho it’s herbs. But just forgetting my back exercises is the deadliest of ‘sins’, I’m not ‘forgiven’ for 3 or 4 days… Everything else I can make up for, but not them! Even doing them double that same evening means at least the night & the next day with back problems.
Yeah 4 hours, and now 2x3h: Looking forward to the nights now for some peace… instead of this continually getting up and thinking ‘how many more times tonight?’
Yeah, my wife really is precious! :smile: She just needs to learn to self-care more now… :wink:

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FMS is terrible! Any change in my schedule, such as going to the grocery store, can cause me to hurt the next day. I hate it.
I’m going through terrible anxiety right now with daughter & dog moving back. Things were so peaceful before. I’m extremely fortunate to work from home, but, before, my little Bella was like a therapy animal, always by my side. Now, she’s trying to become accustom to having the additional dog here, and it’s like I’m babysitting 2 animals while I’m trying to work…I’m sure it will get better.
The daughter is thinking of going back to an emotionally abusive relationship, and hubby and I have had a horrible week of trying to talk her into into getting counselling before making any decisions. She sees the boyfriend that is good to her 50 percent of the time and thinks he can overcome the other 50 percent of the time he is controlling, distant and emotionally abusive. This is the 3rd or 4th time she has left him. We are worn out over worrying about her, but she’s an adult and needs to make her own choices. It makes it even worse that she goes through bouts of depression.
I need to get the self-hypnosis (anxiety) audio book out again and listen daily. Body is forgetting how to relax… :frowning_face: All of this is making me sicker. Going to doctor again soon…

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Oh dear, AM, I hope you manage to get the self-hypnosis started again now/today! :slight_smile:

He’s not borderline (I love you, I hate you, don’t leave me.) or even psychopath (I’ll pretend to love you and need you, so I can have a bit of excitement abusing you) I hope? And she is not co-dependent? (I need ‘this’, can’t go without it; I need you to need me; I need to help you… = relationship- and/or help-addicted). 50% of the time? - if that is realistic and not ‘just’ felt it is much more than tolerable, which the amount of break-ups shows. People who can live together with borderliners or other abusive people should be stable & strong, not depressive, know how to draw healthy lines every minute of the day…
She would in that case desperately need counseling, like you say, plus honest friends she can be honest to herself (who aren’t going to get pulled into the mire and have *no big issues of their own).
Same for you - to be a help for her it will perhaps be better if you don’t let yourself be dragged into it. If he is pulling you into harming you, your comfort-zone and - I hope not - your marriage-life, you won’t be able to help any more even if you keep trying to. This could even be the wrong signal for your daughter, because she may feel you helping yet giving yourself up in the process. Then no words will not be able to make that up in any way. She may need you to draw *your line towards her and him. Like you sh-/would towards an alcoholic or drug-addict. Which may include not taking her up again at all or setting a time limit for it… Is counseling for this situation an option for your hubby and you? Might help more than a doc…
I hope I’m not suggesting anything which is way out of what you can think about/ accept… O.o But I guess it isn’t, because you are talking with her about counseling already. And praps it’s now possible to do it differently.