Any time I have a good day, I push myself a bit… if I have two good days in a row, I start thinking “did I just have a cold before? Did I exaggerate? Was it all in my head?”
Then I crash - exhaustion, migraine, pain all over… even though it was just 2 days that were (relatively) good, I always convince myself that I just made it all up 🤦🤦🤦 good job fibro is always waiting in the wings to remind me it’s real! 😅
Anyone relate?
Posted this fitting meme a while back... I feel ill most of the time and when I don't, that's probably only relative and I start thinking I'm gonna be able to do everything again soon, start making plans. A few minutes later I realize....
.... that that was the same plan as this occasional one:
(But seriously - I enjoy the moments all the same and usually manage not to overuse/-do it, or at least calculate it well.. )
I can’t see the memes 👀
Hmm, I can. Can you see a magnifying glass (with a plus) to click on?
Hi, I think everyone with Fibro can relate to what you say. That's part and parcel of fibro I'm afraid ☹️
Not sure if I've mentioned before. You can lock your post to this community only for privacy reasons if you wish to do so x
Momo
I love the good days that’s what keeps me going and yes payback is always around the corner. But I guess if we think for a minute about the good bits we get through out of a complete week that’s what can give us focus.😀Yesterday the Sun was shining I made up a Spring basket with primroses etc to look at through my window, got too have coffee @cake at Costas with our little grandson (who thinks it’s Xmas every day lol and came out with a present 🎁 today it’s a day at home lots of pacing with the usual fibro effect , glad you are having good days😀and be kind to yourself when your not. Xx
Yes, I certainly relate to that. I think, hooray, I can get on with stuff that's been nagging at me, or, let me see if I can build up my muscle strength while I am on a roll! I notice that these kind of days are when I have had over seven hours good sleep. Then the reward is often another bad night from the discomfort of overdoing it! On the other hand, there is such joy to be had just having a day when you can revel in the sheer fantasy that you are fit and normal like everyone else. - I do seem to be having more occasional good days recently though and this is because gastrointestinal reflux, and a hernia from gardening and lifting things made me much less interested in food and I lost two dress sizes by not eating much for a long period. That was through last summer and some weeks were just one long crash and feeling weak. - If it is any encouragement, I think I have mostly grown out of migraines so they do not figure quite as much in my life and a lot of people do find this. - Do you get both sorts of migraine ie. the half vision and/or the extraordinary sparkling tiara shape that blinds one corner of your vision and says 'Soon, I shall be bringing you great pain!?' I don't like to use pharmaceuticals much but Immigran made so much difference to both kind of attacks. The serotonin raising chemical in it doesn't go well with some medications though. - I wonder about the whole thing about Reality sometimes. Maybe we really are experiencing this for some great purpose in the Universe!!! Meanwhile, trust your head and your experiences just as you would validate such experiences for a four year old asking 'why'. Your creativity will be always remain unharmed and your life will have more intrinsic value than people who are sad enough to put obstacles in your way. Keep going!
Love love love your post 🥰
You said: "I notice that these kind of days are when I have had over seven hours good sleep. "
Funnily I get these days when I haven't had quite enough sleep, i.e. only 7 or 7.5 hours instead of about the 8.5 I actually need, but am sort of revved up in a positive way. Talking with my sleep psychiatrist he said that's due to cortisol, so I'm now very wary of these "cortisol days" where I know I'm flying on my own drugs.... If I calculate well, knowing this, it goes well and I get the missing hour the next few days.
Yes! I can relate to this a little as I used to stay up late if I felt the energy so I could get jobs out of the way. Idiocy! Have a better routine now. I shall google cortisol and keep taking the Theanine and Lemon balm at night and all the other helps at night. Do you notice at all if the period coming up to the full moon affects you? I don't grow long grey facial hair and start howling but wakefulness - well, total inability to fall asleep at night is a feature.
Cortisol: Cortisol is a 'stress' hormone that gets adrenaline to work. For very quick look-ups see our glossary: fmauk.org/information-packs....
Amino acids: I use theanine too, to balance GABA (serotonin / relaxing). But as theanine influences dopamine (energy) as well as serotonin (relaxation), I've realized it's better for my night's sleep to take theanine in the mornings. Same goes for things like magnesium glycinate and taurine, which wake me up altho most people can take them for sleep. Amino acids and neurotransmitters are a finely balanced system, and mine is obviously wonky, so it was quite a bit of work, incl. overdosing to find a fairly good balance.
If I don't take GABA regularly throughout the day, some of my muscles tense up (e.g. bladder, seizures). It also helps me keep histamine down, I've now found (as I now know I have MCAS as well, with some histamine involvement).
Moon / phases / passiflora: Hehe, some may think I look a bit like a vampire rather than a werewolf, but I react neither with energy nor with fear to the moon. Only a bit of a placebo effect energy cos it looks so beautiful and radiant. But the moon is proven to influence some people, so not just placebo. I imagine I'd have to try to adjust my passiflora (and GABA?) to the moon phases if that were the case. I'd just gone up to 4x.35g with my passiflora due to a new purer product with bigger capsules, but due to an antihistamine and acupuncture it's got too much, so I'm adjusting spontaneously, either 2 or 3x .35g, depending on how often I'm up. I spose that's how I'd also adjust it if I reacted to the moon - not by keeping watch on its phase, but if I haven't taken the last capsule by 4:30am, then I leave it, but if I get up once an hour then I know I'd need all 4x (which is a bit of an overdose). I've actually managed one night with only getting up twice!! But not for the price of being a zombie. We vampires 👻 hate being zombies 🧟. And it seems my body needs to get up once in a while anyway, to stretch and keep pains down, nostrils free, even when bladder's OK.
Thanks for the Fibro info link. Didn't know one existed. Have starred that on my bookmarks. I take Gaba too. Interesting what you say about GABA for stiff muscles. My doc gives me quinine for inner thigh cramps but I don't take it all the time, so I will try upping the GABA because I have to try and do some remedial work on the house and it may help with the muscles required. I certainly find it helps all the other stuff at night which includes 5htp. My son has GABA powder too and has put some in capsules for me which makes it much cheaper. He has migraines and finds it helpful. Takes lots and experiments with different doses of aminos. We are both also taking nmn powder under the tongue. Very pleased with the results of that so far and it's very safe. - I've also recently started taking magnesium glycinate at night but am ok with it at that time. I've gone back to using the chinese clock again (Google) to see what times I am waking, so last night worked on lung and liver (early hours) with herb teas of lungwort, fennel seed, lemon verbena and mugwort, in addition to montmorency cherry capsules. Good result. Had over eight hours sleep with good rem and one hour 25 mins of deep sleep. I had a half piriton ready to take with the two am wake and it certainly worked. I sometimes take mct oil and a spanish sage oil capsule in the morning to undo the brain numbing effects of it. Certainly not something to take long term but I have been fairly lacto intolerant in the past but put goats milk back into my diet recently to raise serotonin levels and it has been helpful. Yesterday was also my first day of taking the Lactobacillus Plantarum my chiropractor has suggested (Solgar). That may have helped my gut too but will need a week to see the real difference it might make. I will certainly post if it makes a difference to the IBS. Shall also be taking the taurine again that has been sitting on my shelf all year. - Thanks for all the info.
Ah, lots of similarities there! 
5HTP and L-tryptophan unfortunately hurt me more than helped... Yep, I encapsulate the GABA too (4-5 other supps too), as my esophagus & stomach don't tolerate the powder pure. My other aminos are glutamine and carnitine, whilst I've ditched NAC and NADH (similar to NMN) several times after they first did seem to help.
Hadn't heard of the Chinese clock concept yet, have to take a closer look. I have no set waking times, the sleep stints vary between 0.5 and 3h, but the breaks short now, and sleep depth and REM seem OK.
Things I try to get me awake after taking something numbing don't help enough. So it was important for me to get an antihistamine that doesn't zombify, which my 2nd gen. one doesn't.
Good luck with the "Lactiplantibacillus plantarum"! - yes, please post. After trying quite a bit of similar stuff to no avail, I'm just sticking to eliminating food triggers, however.
Thanks for your interesting ideas!
We are all so different in our metabolisms aren't we. No wonder research hasn't cracked it. I need at least a week to see what the Plantarum does then I will report back. My son and I have tried Symprove. Certainly quite nice to take and a good product. Just pricey. All I can say is that I think it may have helped but I don't know how much my own shortcomings may have contributed to dietary recidivism! After too little sleep, I seem to lose control for a while and brain fog and tiredness stops me getting it all together. (Are we not wonderfully human?) - My acupuncturist yesterday told me kidney and bladder, not liver causing a problem, which was encouraging, so I will work on that while she goes to watch lions and play with scorpions for three weeks, a break she thoroughly deserves. This leads me to ask how you or anyone else reading this cope with travel. I think I will make a separate post about this.
"After too little sleep, I seem to lose control for a while and brain fog and tiredness stops me getting it all together. (Are we not wonderfully human?)" - Definitely! I usually have a very high self-control, and need that if I want to get anywhere at all, needing 1-4h/d self-physio and ~50/d capsules. But several things sometimes distract from the routine...
"This leads me to ask how you or anyone else reading this cope with travel. I think I will make a separate post about this." - In case you don't: Never been good with travel, much worse with fibro. Last time we tried, I needed 2 days to recover from the 1h car trip there and "different air"??, not quite as long back. Often problems with mattress, need my own food, environment, distraction from self-care, can't do much, need a bike, hate cars... Love home...🏡
Good to hear you love home, but I wonder if I would love mine better after a really long and relaxing holiday. It definitely is the 'relaxing' part that poses the problem and mattress, food, hygiene and accessibility issues as you say. I would still love to get away to a reasonably priced hotel for a few days and be fed (which my lovely mum in law so reasonably expected as a once yearly right) but I think I'm certainly put off by the idea of coping with discomfort and lack of sleep away from home. I googled agoraphobia and the consensus was that people can have claustrophobia and that at the same time! Definitely have those sorts of feelings. - My big trip this last autumn was to an arboretum one hour away where we met up with an old friend at her invitation. Was fantastically motivating as she is someone I am extremely fond of and miss seeing. It proved to be a great day out and I even managed to walk more than usual and deal with the journey (by managing to remove bra vest, from beneath t-shirt and sweater, on the way which relieved shoulder and rib pain - as you do if you have fibro) so I am encouraged to be driven on this kind of day trip again. - I still have a fantasy of being able to sit quietly on a beach or with a view of mountains with total access to my own loo and no-one else to say something to upset me! Conversely, not always being able to join family on the beach a couple of times has also been really disappointing in past years. However, I am going to explore the idea of when lack of sleep might mean I do actually have enough energy sometimes, re your observation, that it doesn't always mean fatigue will follow. I'm always assuming something negative will happen because I've not slept well and allow myself to stress about lack of sleep and the backlash of discomfort that comes with it. Cortisol is naturally in our systems so some palpitations and stress might be made worse because of a worry about not being able to meet obligations or cope with a crisis. More consciousness of this would seem to be appropriate. - Lol. I keep trying to organise and keep records in an A5 page a day diary!- Footnote -Yesterday I departed from keeping strictly to a sleep, health, mood and food entry to write in it that Nazanin and Anooshe were being re-united with their families. I cannot imagine the extent of pain and misery they have been through and now I hope the worst of it is over for them. I just felt so much joy and that felt very healing for me too. Just shows there is always the chance of a breakthrough and a second go at life. - Have a good day!
I spose I'm an odd fish loving home without having to go anywhere else to enjoy coming back "even more"... ;-P. I do (did?) relax after 2 days, but my biochemistry seems to prefer & desire having something seemingly "purposeful" and relaxing to do quite a bit of the time, which is easier at home... 🤪
"Being fed" I remember being nice (at least once I stop believing I have to eat everything up), but nowadays it's often embarrassing and stressful to try to explain to people "I love it all, but can't eat any of it, just some unprocessed, praps uncooked veggies, and yes, I'll pay twice the price for you not to put any spices etc. on it, thank you very much.... - oh you did, hmm... oh dear...." 🙄
Agoraphobia - a bit, claustrophobia a bit, I'd just be surprised if people could have it at the same moment? But the few times I've flown - no more, for many reasons - I got fear of take off, of flying and of heights under control, claustrophobia was toughest. I got rid of my fear of heights as well as many other - mainly social phobic - with mindfulness: I am safe in this moment here where I am, and I'd try to use that for agoraphobia (I think it's that what I get in high rooms) and claustrophobia.
An arboretum in autumn sounds enticing!: Day trips would be best for me too, altho 2x1h drive on one day... Hmm.... Lots of rest. Meeting people I miss works best if there is absolutely no pressure, I can feel "at home", which it sounds like in the case of your old friend. On our week's trip in autumn we stayed in an old monastery - old, but very big and modernized rooms, next to a wood - a bit dark & lonely praps, but very peaceful.
Total access to my own loo, yes! Or at least trees and bushes all over the place. That was always such a big one on hols, at least before I found out that almond milk helps me "contain the water".
"I'm always assuming something negative will happen because I've not slept well and allow myself to stress about lack of sleep":
My first workaround is to know (studies, experience of nurses) and even more believe that we always sleep more than we think we do. The second is use Yoga Nidra as sleep substitute, which I 'believe' is even more restorative and better for my body than light sleep. Third is otherwise getting up if I'm wide awake until I'm really weary & dead tired again (if appts/work don't allow, back to Y.Nidra). The fourth is cautiously use and enjoy the extra time and praps even cortisol energy, and fifth try to watch the best time to take the next sleep (a. long nap, b. power nap, c. bed earlier or d. bed regular time).
I agree fully that "Cortisol is naturally in our systems so some palpitations and stress might be made worse because of a worry about not being able to meet obligations or cope with a crisis. More consciousness of this would seem to be appropriate." Sometimes I can "fly" on that cortisol, but doing so and not crashing is still a delicate balance, so is definitely best used by putting mindfulness first, and resting all the same; it's walking on eggshells, maybe sick atm to say 'minefield'... 🙄
Great news about Naz. & An., thanks for sharing! I don't get much news details, cos it hurts me too much. My wife and mates filter for me and I get a summarizing newsletter from our local paper, but all needs to be wrapped up by the afternoon, so it's digested by the evening.
Good to hear about your diary page, don't hear often about this. If it were public, I'd be interested to read how you do it! I'm very diligent with that myself, I've been writing a daily blog on symptoms, triggers & treatments for 1.5y now (in case you're interested: "JayCS's fibro blog", see link on my profile if you can't find it).
A nice weekend to you!
Same here with the lack of sleep leading to energy. Thanks for mentioning the cortisol link, hadn't realised that!
Oh. My. God. I could have written this!
This is why pacing is important - especially on our better days when we are inclined to push ourselves a bit farther
By not overdoing things on our better days, we are less likely to crash and flare
Thank you ☺️
Still trying to work out what overdoing it is - all such a big learning curve! 💙
Yep.I wonder to myself, every time I have a few days like that - 'maybe it's going away!' - but nope, I do so much when I feel well (my husband calls it overdoing it) that I usually crash spectacularly
Yes! Absolutely 😅
I csn totally relate! I try now not to over do things on a good day, don't always succeed..
I always have so many things saved up in my mind that need doing and I don't know when I'll get another chance so I do them all at once.... lol
I have started trying to pace myself, but I definitely feel like I save so many thing up for when I am ok, that I want to do them all in one go! 😅
Totally feel this 💯sending you hugs 🤗 The struggle is real.I have a good couple days work,social etc then I crash and am exhausted,intense pain and run down.Fibro has a lot to answer for
Please take the rough with the smooth and make the most out of every good day.After all we are still human 💙
Please let today be a good day
A good day!!
a very strange day
Good day
Another day in bed! 
