Intermittent pains/exhaustion - Fibromyalgia Acti...

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Intermittent pains/exhaustion

PenelopeClearwater profile image

Still getting to grips with what on Earth is going on with my body. I’ve had flare ups where I’m just unable to leave my bed for days at a time, but this weekend, I’ve had intermittent pains in my arms and legs that have eased for a bit when I’ve sat down with my feet up. I keep getting very weak arms and legs and I’m feeling so exhausted that I’ve been crying on and off since Wednesday… I just wanted to crawl back to bed.

It’s the first time that I’ve really noticed the weather playing into it - when it’s been warm and sunny, I’ve suddenly had normal energy levels again, but then it gets cold and grey again and my body seems to throw a tantrum.

Does this sound familiar?

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PenelopeClearwater profile image
PenelopeClearwater
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15 Replies
Buildashed profile image
Buildashed

Hi Penelopeclearwater, I know exactly how you feel, I am going through the worst flare I have ever experienced, stabbing pains and aches all over, I normally get on with it but this time I have been scared, different types of pain and aches. It just won’t go, I am thinking the same it’s the weather as it’s been so cold. My anxiety has gone through the roof, and I keep crying. Bring on the sun! Let’s get a bit of respite. Just rest my lovely put them feet up, we know it will pass, damn fibromyalgia. No one knows how bad it is unless they have it. Take care the forecast is looking good the weekend, 🤞. Gentle hugs coming your way. 🤗🤗x

PenelopeClearwater profile image
PenelopeClearwater in reply to Buildashed

Thank you for your reply - sorry you’re having a bad time too.

Just knowing I’m not alone in it really helps 💙🤗x

Yassytina profile image
YassytinaFMA UK Volunteer

Sorry to read this flare is ongoing 😔I differently feel more positive when the Suns out , yesterday it warmed up and I sat in my conservatory with the Sun on my face for 10 mins and thought of the warmer days to come, I hate the cold and plays havoc ,small things like sitting outside will be good for you after months of being stuck indoors. Hang on in there just rest it out , let’s hope it passes soon and if you need to get back into bed to rest or sleep don’t worry , I could have slept for England over the weekend , we just take it day by day, sending hugs xx

PenelopeClearwater profile image
PenelopeClearwater in reply to Yassytina

Thank you ☺️

Bring on that sunshine!!! I’m resting today - I need reminding that I’m allowed to!💙

KimiJay profile image
KimiJay

It certainly does sound familiar. The tears I understand too. Frustration, monotony and loneliness provoked by not living as we once could. Makes no sense at all not to have that freedom anymore. - I am certain Fibro responds in a bad way to the change of seasons. I've felt cold recently, in bed, especially early mornings and then feeling sudden attacks of it during the day. - Right now I shall be mindful of the state of the moon too. I once read that it influences clam shells to open and shut - a researcher called Gay Gaer Luce wrote a great book called Bodytime ... so since then I've been aware of how the pull on the Earth's gravity affects me. Coming up to full moon made me and lots of others more active, but it just keeps me awake now. Full moon is in six or seven days time. See if it changes anything in your energy. - I was interested the cortisol reaction too and still trying to understand that better. - Defo think the increase of light is helpful to all sufferers. It's doing what I want it to. I come alive about mid April after winter so almost there now. - Warmth and sunlight during the day is good but it is still cold at night. Am sure that contributes to the overwhelming feeling of tiredness sometimes. Even a slight chilliness is potentially painful and unpleasant. Perhaps our ancestors got it right with the saying 'don't cast a clout (clothing) till May is out.' Yeah! Frosts done by then. Just because we have central heating or radiators doesn't change the historical agony of cold and the message it gives us. Perhaps our bodies are too confused by the flow and change between cold and warmth... I don't think we were well designed at all by our evolution. - Hope there is someone around you to give you a warm hug now and then. Enjoy the bed rest if you can.

PenelopeClearwater profile image
PenelopeClearwater in reply to KimiJay

Thank you - you’ve given me some really interesting things to look into. I definitely struggle to sleep with the brightness of a full moon, didn’t realise anything else might play into that!

I’m currently snuggled with the pup, but he gets naughty when bedtime rolls around, so wish me luck with that 🤣

💙

KimiJay profile image
KimiJay in reply to PenelopeClearwater

How lovely to have a cuddly puppy. He will be the head in your lap staring up at you with loving eyes when you feel down and also such great fun. It will be interesting to hear about the difference he makes to your life with fibro.

PenelopeClearwater profile image
PenelopeClearwater in reply to KimiJay

He really is adorable and so much fun. I moved back in with my parents when I got too unwell to work and he’s their pup really. They were away this weekend and it was such hard work - I really struggled to keep him entertained and take care of myself at the same time…x

KimiJay profile image
KimiJay in reply to PenelopeClearwater

I must say found it quite hard helping look after our last, ageing cat years ago. Puppy will suss out your needs in time I reckon. (Not a cocker spaniel by any chance? They are hard work but very bright.) My son who also lives with us is desperate for another cat. Hubs and me too but not sure our local birds would like it and I worry it would stop me sleeping (as that may have precipitated the fibro). He's trying to make friends with our local squirrel that visits the lawn. He can throw nuts to it now and it doesn't run away too far. He also takes nuts to the park in Leamington when he drives me to a my acupuncturist. He was so surprised the first time he offered one a nut and loads more suddenly crowded round him. Ideally we would make a squirrel gym which might be therapeutic but not sure any of us feel like the effort right now - my hubs just tested positive for covid on an Lf test. - He's the one who had the vax! - Meanwhile I've just started a massive declutter because I don't want my fam to have to clear everything when I go. Helpfully, with the decluttering, the cortisol is obviously coming to my aid during the day and that strange energy also seems to helping me strengthen up, despite not brilliant sleep scores, so that experiment is ongoing. I switched from cherry juice last night back to valerian, which I can take because I don't have any regular prescribed medications. Overnight it has done wonders for the strong palpitation of my heart which I have had for months now.- Don't know if that will be of any help to anyone!

PenelopeClearwater profile image
PenelopeClearwater in reply to KimiJay

He’s a schnoodle - three quarters miniature schnauzer and a quarter poodle. He’s so clever and so naughty - I love him to bits, but he is ever so demanding. He is also very jealous of the cats (one is my parents’ and one is my cat - I brought her with me when I moved back in!) I grew up with dogs, but I think I can relate more to the aloof nature of cats 🤣

He was taking care of me when I got upset with pains and exhaustion - at one point, I was just surrounded by all of his toys, as he kept bringing them over to cheer me up - my heart just melts. I do think I would be in a worse place with my health if not for the pets - they give me a reason to get out of bed and get into gear. I didn’t want children, so my pets are my equivalent!

I hope your husband doesn’t suffer too much - at least with the vax, he shouldn’t have as bad symptoms 🤞🤞🤞

Lack of sleep is just horrible - I really think if it wasn’t for the extreme fatigue I get, I would be able to handle the pains.

I’m pleased the palpitations are under control - I’ve struggled with panic attacks and ptsd over the years, so I can relate to that palpitation feeling and it is horrible.

I totally understand being in two minds about having a new cat - they can take a toll, but I find them so calming and loving. I’d adopt all of the Cats Protection ones if I could 😆

KimiJay profile image
KimiJay in reply to PenelopeClearwater

I know what you mean. They always give them names and you think, I would love to have a cat with that name. - Look at his little face! - Picture immediately under your reply.

PenelopeClearwater profile image
PenelopeClearwater in reply to KimiJay

Here he is - 6 months old 💙

Little gremlin
KimiJay profile image
KimiJay in reply to PenelopeClearwater

Awwwwwwwwwwwwwwwwwh! What a gorgeous little soul! Beautiful!

Midori profile image
Midori

Unfortunately, yes, it is horribly familiar to me.

A sunny day will make me feel better just because the sun is shining, but a windy, wet and thoroughly miserable day, and URRRGGGHHHH!

Cold weather also does it to me, and the increase in the pain from cold muscles is horrible.

It's very tempting to hide in bed, but it is not good for us, for several reasons.

If we stay in bed we lose muscle tone, which will make moving harder over time, also, our muscles can contract, which in extreme cases can end up with someone curled up like a dead spider. If you have ever seen someone who has had a stroke, but not had much physio, that is the result you can get. Exercise, even if just a few minutes walking around the house, or walking the dog can keep the muscles from contracting.

Vitamin D, which you can get by being outside in daylight, keeps up the calcium levels, which keep the bones healthy and exercise ties into this too. If you are not exercising and get short of Vit D, your body will look for another source of calcium, and there is this handy source, not being used if you're in bed, your bones.

Your Hormones also help with bone strength, so as you approach the menopause, or you have had a radical hysterectomy, you will probably need supplements. (I was a nurse before I retired).

Hope this is of some help.

Cheers, Midori

PenelopeClearwater profile image
PenelopeClearwater in reply to Midori

Thank you - this is really helpful. 💙

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