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Fibromyalgia Action UK

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Just come across this ...

Tommygurl profile image
33 Replies

Am afraid to say this is us x

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Tommygurl profile image
Tommygurl
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33 Replies
Blue-52 profile image
Blue-52

Allodynia, is y I am constantly in a sarong, even clothes hurt, aren’t we the lucky ones grrr.

Tommygurl profile image
Tommygurl in reply toBlue-52

I could never understand why I couldn't stand anything around my waist unless it's loose fitting or my ribs being touched since being a kid it's all coming together now x

Blue-52 profile image
Blue-52 in reply toTommygurl

Yeah, it’s all trial and error, every one is different, I have so many different elements, it’s ridiculous what fm can cause

MaggieSylvie profile image
MaggieSylvie in reply toTommygurl

OH! My aunt was like that, but never complained of anything suggesting FM (although that was years ago). I have never had that problem but I do have FM, except that I have other things now that are mainly unconnected. Strange.

Tisme72 profile image
Tisme72 in reply toTommygurl

I understand that completely, it’s really hard to find something that works, I’ve found that bamboo underwear helps me a lot, it’s soft and thin material and it’s very absorbent, it can be a bit expensive but if you shop around you can get it at a reasonable price. Most of mine come from “the great river” and I always get a size up from my true size. With jeans I wear stretch ones, a size bigger and use a buckleless belt (they hook around the loops nearest the fly), this also helps. The tops I wear are usually as soft as I can find, brushed cotton is good. I hope that this gives others ideas that maybe they haven’t tried.

Tommygurl profile image
Tommygurl in reply toTisme72

Thank you for the information xI've never heard of bamboo underwear

Smilesalot profile image
Smilesalot in reply toTommygurl

Oh gosh😯 I always thought I couldn't wear right things was because I m fat.I can't have anything tight on me I feel like I'm suffocating I panic and with polo necks I've cut ✂ them off in a mega panic. It's difficult finding the right things to buy.

The waist part I thought was in my head but I have panic attacks if anything touches it.

Wow!!! Thank you people for clearing that up!

I hugs🤗🤗🤗 you all 😀Dawn

Tommygurl profile image
Tommygurl in reply toSmilesalot

Omg I have panick attacks in polo necks or anything tight around my neck .just thought it was me being weird..Ever since being a kid I've never liked bottom of my ribs touched .I've always kicked up a fuss if a doctor tries to examine me anywhere near my ribs/waist x

Smilesalot profile image
Smilesalot in reply toTommygurl

Hi Tommy gurl,I can't have any one press on my tummy ribs or chest. I hate things over my face.

I do understand , my real freak out area is my neck !

I'm always trying to find something for keeping my neck and shoulders warm. Nope lol.

I hope you find something manageable for ur tummy.

Hugs sweetie Dawn 🤗

Tommygurl profile image
Tommygurl in reply toSmilesalot

I've gone through life with so many symptoms thinking it was just me and now to find other ppl are the same 🤷‍♀️ it's crazy .I couldn't understand why tomato ketchup and salad cream made me 🤢 kids have all left home now my son came yesterday made a bacon butty ran to shop for tomato ketchup as I never buy it, it all starts again 🤢🤢🤢🤢

Smilesalot profile image
Smilesalot in reply toTommygurl

Hi Tommy gurl🤓.I liked Tom sauce until a few years ago.

Just makes me feel sick meh.

I like mayo tho lol.

I used to hate it🙄

Hope you're ok sweetie hugs 🤗

Dizzytwo profile image
Dizzytwo

Fortunately not everyone with fibro gets all those symptoms.

Tommygurl profile image
Tommygurl in reply toDizzytwo

It was just an example of the symptoms. I have recently been diagnosed with fibromyalgia I have most of them by 2 . Trying to come to terms with it all and putting it all together like a jigsaw 🙂

Dizzytwo profile image
Dizzytwo in reply toTommygurl

HI, I hear what your saying. I have had fibro for over 40yrs. I am now a wheel chair user. But that does not mean everyone with fibro will need that kind of aid. I hope you have a good weekend xx

Tommygurl profile image
Tommygurl in reply toDizzytwo

Sending you lots of love have a good weekend xx

Dizzytwo profile image
Dizzytwo in reply toTommygurl

Thank you and you too xx

Suffering2021 profile image
Suffering2021 in reply toTommygurl

I have it all , plus more . I feel sometimes I’m going mad , the chronic pain is just excruciating & insomnia is awful

Tommygurl profile image
Tommygurl in reply toSuffering2021

Sending you hugs xx

Smilesalot profile image
Smilesalot in reply toSuffering2021

Hugs and love sweetie 🤗🤗Dawn

Blue-52 profile image
Blue-52 in reply toDizzytwo

I wish I didn’t Momoxx

Dizzytwo profile image
Dizzytwo in reply toBlue-52

Hi Blue, I know many people do have all of the symptoms. Just saying it's not a given everyone with a diagnosis of fibro will have all those symptoms.

I hope your doing ok. Sorry not been around so much lately due to health issues . But keeping my eye in lol 😘

Blue-52 profile image
Blue-52 in reply toDizzytwo

Yeah I know, so now we are both in a chair, it’s not fun is it 😔.

Sorry you have been having a rough time, I hope it eases soon, gentle hugs 🤗

Welshcatlady profile image
Welshcatlady

I have all of them, thankfully they don't all present at the same time!🙂

Toby14 profile image
Toby14

Exactly. I've got the lot.

Loobielu profile image
Loobielu

Yep I think that is pretty accurate all be it in a cute illustration. Quite sobering really. No wonder we leave doctors scratching their heads! X

Seascapes31 profile image
Seascapes31

🤩

Tisme72 profile image
Tisme72

Unfortunately that’s Fibro life, some get most, some of the lucky ones only get a few! I’m sort of mid field, nearer the top in a flare up, usually in the colder weather for me so it’s a bit rough currently.

I think that it’s more difficult for males because we feel useless when we can’t do the things that we should be doing in the household, I often push myself way too hard!

Fortunately for me despite my age I’m still quite active, I have enough attitude to manage to get on with my life, mostly through accepting things and understanding my limitations. It’s a bitter pill to swallow but if you can it helps. If there’s one thing that helped me a lot recently it a song by a lyrical genius - Ren, the song is Hi Ren; if you’ve never heard it, it’s well worth looking it up, it’s a story about his life, he’s currently in Canada having specialist treatment.

Tisme72 profile image
Tisme72 in reply toTisme72

I just want to clarify part of what I said, I am in no way trying to slight the majority, I know I’m a minority! This for me is what makes it the way I perceive it, I often get rude remarks from people who don’t know me when they see my wife working hard in the garden. It hurts, and I make up for it by doing all of the cooking, washing up, making bread (I have to eat sourdough and it’s way too expensive in the shops so I learned how), and cleaning the house. I can’t do ironing - I have tried but it ended up worse than it was before I started 😆. I really do sympathise with those of you who feel like I do, I do the best I can and sometimes overdo it. I am just beginning to try to do some of the heavier work, it’s hard but I am at least trying!

desquinn profile image
desquinnPartnerVolunteerFMAUK Trustee in reply toTisme72

I am sure there are plenty of males that feel their worth is defined as less through what fibro has taken away. Their ability to earn, support the family, be the strong role model and the one that does DIY, and also the ability to be intimate with their partner.

This is echoed with a lot of frequency within fibro groups that are just for males and also that they feel isolated within female dominated online and in person groups.

Equally, females are defined by similar driven roles that are expected by society, culture and upbringing. Supporting the household, caring for family and specifically children, and many others that are shared in this group.

This is often shared by both genders, that they feel guilty at what they are not able to do and letting their family down. This is people being self critical and often pushing themselves harder when they should be pacing better.

So please be kind to yourself and others within our community.

Smilesalot profile image
Smilesalot in reply toTisme72

You should be proud of yourself sweetie.I'm lucky. My neighbours know I'm ill and one of them saved me after a fall in floor for 3 days.

And all you can do is try. Hugs sweetie Dawn 🤗

Al10 profile image
Al10 in reply toTisme72

I know nothing about Ren but the video was powerful stuff. He has lived it huh? Ought to relisten but, need to be in the mood I think?

Emaych61 profile image
Emaych61

There are other conditions that can result in some of those symptoms. I don’t get quite a lot of those listed, and of those I do get the majority I can pin on other medical conditions I have. Anyone who, like me, has EDS/HSD (and fibromyalgia is common in that group) may get a number of them; the same will be true of anyone with thyroid issues (and I wasn’t aware that I was possibly in that group until a blood test very unexpectedly flagged it up last year).

Debsdelight72 profile image
Debsdelight72

Tick,Tick,Tick,Tick☹️

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