So many people wrongfully diagnosed! - Fibromyalgia Acti...

Fibromyalgia Action UK

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So many people wrongfully diagnosed!

14 Replies

Hi I just want to make a point of saying so many people are wrongfully diagnosed because they have a muscle strain in there leg or a head ache fibromyalgia does affect people differently but it's a chronic condition it effects moods skin bowels sleep muscles stomach light sensitivity insomnia rib pain chest pain heart palpitations feeling like u have the flu it's awful I spoke to a lady the other day from my daughters school we got in to conversation she was like u lost weight I said yes I'm not well I have fibromyalgia she said oh yes I've got that in my hip I said oh no what other symptoms do u get she said just a pain in my hip I said what do u take she said nothing 🙄xxx any way my point is u get pain all over above waist and below its not a twinge in an area x

14 Replies
Alizah profile image
Alizah

Fibromyalgia is a debilitating condition. Us fibro sufferers r grieving the life and abilities we once had. We put brave faces on to try our utmost best to carry on with life with widespread chronic pain. Every day is a struggle.

I totally feel the frustration that brings on when people don't understand it at all!!

Tc Xxx

in reply toAlizah

So true alizah I used to be so glam now I'm like a shell of the old me I'm hopping I will gain my joy again one day soon I feel like a failure to my kids just mopping about I do get them out everyday I cook and clean to but I'm just constantly in pain x

in reply to

I don't sleep in same bed as hubby cos I keep him up all night and he works full time xx no matter wat I don't have energy x

Alizah profile image
Alizah in reply to

Same Lola, i can't do much finally physiotherapist called told me to aim 5 min walk target. I can do 3min. With no face to face consultation getting no where😳 feel letting my family down X

in reply toAlizah

Well we have to keep fighting xxxx that's the only thing we can do x

in reply to

❤️

Carlt profile image
Carlt

It works the other way round too. I spent two years in agony with a rotator cuff injury I dismissed as my fibro.

Once my GP spotted it as unrelated to the fibro I got the proper treatment and was better after a couple of weeks.

Still got the fibro though.

MaggieSylvie profile image
MaggieSylvie in reply toCarlt

That's the danger. Once you're diagnosed with FM and you get something else, you don't know what's what. I've got OA in my knee but the pain at one point was unbearable; I wonder if FM magnifies anything else you've got. Now I've got non-specific lower back pain (having MRI scan today) and I can't do anything on my feet for more than about 5 minutes. It started out as a "slipped disc" (the last of three in just over a year) but I honestly feel that if I had broken something, it would be less painful by now. At least no-one has actually pointed the finger at FM. When they ask and I say I have it, they don't seem terribly interested.

My fibro isn't so bad these days, but that may be because of other pain taking my attention off it. At least I no longer get migraines, which is a great relief.

Annmarie09 profile image
Annmarie09

Yes I know it used to drive me mad even my manager once told me when I said I’m feeing too unwell to stay in work today , she said my mother has it too she just shakes it off and gets on with it can’t you !!! I think Gp’s sometimes mention it and that’s it !!thanks for sharing.

Xx

in reply toAnnmarie09

So true yet frustrating as well u get a twinge in your leg muscle its fibro if only it was that simple grrrrr xxxxx

MaggieSylvie profile image
MaggieSylvie

How could she be diagnosed when the pain is only in one place?

Did you put her in her place and tell her about "the real fibro myalgia" hope so, on the other hand you'd still be talking to her now😂Take good care xx

in reply to

Along with the many symptoms of pain exhaustion etc comes the feeling of uselessness. Then the inability to explain and make 'normal'? people understand what this condition does to us even if they want to xx

Maud-ie profile image
Maud-ie

It just makes me sad that no-one without Fibromyalgia including my family really 'get it'. It is a very lonely place once you are diagnosed and just left to get on with it.

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