Dear all, I have to ask and wonder if anyone can help me. I am new to the Fibromyalgia diagnose. Today and yesterday, i had two really good days, i felt cheerful and energetic, my long gone usually self, i even caught myself running up the stairs at work.. something i hadn't done years... my medication is the same, not long ago, I was bed bound for a week and couldn't move with so much pain.. i cannot identify a trigger that made me feel better...or any change. Is this what Fibromyalgia is? has anyone experienced these moments that give you hope and a glimpse of who you used to be?
Thank you, its really great to have a platform where i can make questions and talk about this.
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Zee1973
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Hi Zee1973 I'm fairly new to the Fibro world, I've noticed I have good days whem I think I've been wrongly diagnosed cause feel well and able to do more, I then have those days when I struggle to walk up the stairs, I think it's all part of Fibromyalgia, good n bad days.🙂
Things can build up to make you flare and likewise make you feel better. Be careful not to overdo it when you feel well, it's better to try and find a baseline and then slowly increase from that. (Talking from experience, I just pushed myself to carry on until I physically couldn't anymore.) I think it's a multitude of things that combine - physical activity, stress, mood, diet etc so it's difficult to pinpoint what makes you feel better or worse. Listen to your body when it's hinting you're pushing it, when you ache rather than bedbound with pain and take a step back if you can and use the things that help like heat packs. I've done this the last couple of years and my pain levels are much better and I'm now building up my activity. Good luck.
Thank you for this, it makes a lot of sense and I agree that it really is important to listen to our body, but I felt so happy with the fact I was feeling great that for a moment I forgot I should take it easy anyway ! Thank you x
Though I've had Fibro for many ,many years I can assure you that at least in my case it hasn't become any easier. A fellow sufferer wrote, as a way to explain her pain to family and friends, "think about how you feel when you have the flu. Your body aches so badly it even hurts when you pull the sheets over you in an effort to sleep. Also imagine having to wear your underwear inside out to prevent the seam in the fabric from touching your skin, because even that can cause pain. So we're in a daily battle to cope with this illness. And its tough."
Don't worry if you forget - your body will soon remind you! I don't mind so much if I've enjoyed myself and pay for it, it's when you flare for no apparent reason that's frustrating. Just try to find a balance that suits you and definitely enjoy the days you feel back to 'normal'.
Many of us Fibromites are weather sensitive, when the weather is grey and grimy, cold or just horrid, we find our aches and pains come out to play!
When the barometer rises and we get a warmer sunny day, we often feel better, more hopeful and able to do more, but we still need to be careful we don't stretch our strength, or we may find ourselves in a Flareup. Some of us do better in warm weather some in cool. I'm a warm, but not hot bird. Spring and Autumn are my best times.
It is important that we keep ourselves moving, you mentioned being bedbound, not the best thing, as you lose muscle tone if you lay in bed, even a week and you would feel the difference. The longer you do it, the worse it gets, so please get out of bed, and move around.
I was confined to bed for 3 months, awaiting my first child, and after the delivery I was in a wheelchair for 3 weeks!
I have noticed that the Covid Lockdowns have affected my fitness, and since they are getting slowly lifted, I've lost a lot of muscle tone, so I'm gradually walking further each day.
Have you looked up The Spoon Theory on the Net? Please do so, it will help you to understand Fibro better, add it's also a handy way to explain how it affects you to friends and family.
Oh yes .. I definitely feel the loss of muscle, I was always very fit and practiced yoga for many years, then my knee start hurting … shortly after hip … and soon all over body pain. I do walk a lot and try moving but at certain times, even getting dressed or shower armas too much. I’m sorry for what you’ve been through, we really need to live one day at a time and keep hoping we will get better ! Thank you x
My sleep psychiatrist explained when I described these sorts of days as fuelled by (body) cortisol ("adrenaline"). I sometimes get them when I've slept a bit less but other things are favourable. Means I've got to watch out for the end of the game and carefully "wean off this cortisol", usually after 2 days, otherwise I slap down on my nose. Apart from that I have good days and times when I have less strain (e.g. no work for a time) and some of my treatments are working well, e.g. cryotherapy, acupressure and GABA. Due to keeping diligent diaries (blog) I'm learning and building up continually from that, albeit very slowly and on a low level (20% work).
I'd definitely try acupuncture, I'm the only person I know who it harmed (but now I know a cold shower undoes it...).
GABA is a supp, an amino acid, a neurotransmitter in the body. It was more to the end of my long list of 80+ treatments as I'd often read that it can't help. Whereas its derivatives gabapentin and pregabalin are anti-convulsants, quite often prescribed for fibro, but which have too tough side effects for me (turned out quickly I tolerate hardly any meds). But it's the only substance that's helped me, and that in 11+ symptom areas (and in combination with passiflora and magnesium malate). I think that's cos I'm rare in that I (otherwise) get stiff all day, not just in the mornings, due to (not measurable) muscle tone.
No other supps or herbs helped. Best thing about GABA & other amino acids like L-tryptophan: You can read thru a short symptom list whether low GABA, low serotonin, low katecholamines, low endorphines or low blood sugar might be contributing to your symptoms (e.g. Trudy Scott's blog on anxiety, which I haven't actually got any more) and then you take it (best as she suggests it, altho it's different for me) and can almost immediately see if it's helping or not... HTH...
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I don't mind so much if I've enjoyed myself and pay for it, it's when you flare for no apparent reason that's frustrating. Just try to find a balance that suits you and definitely enjoy the days you feel back to 'normal'.
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