Fibromyalgia

[craftinglass]

I have recently been recently by a Rheumatoidologist been diagnosed with Fibromyalgia, although i have known for quite some time that i had it.
Fibro is a VERY painfull condition that effects all the joints and muscles in the body and is horrible to live with. It also causes extreem fatigue and confusion.
Is there anybody else in Caithness been Diagnosed with this terrible condition?? Or is there a support group out there already that i just dont know about ??
If you can help Thanks x :)

[Shabbychic]

If you click on the Community button at the top, and go into, Social Groups, you'll find a group there of folks with Fibro/Me.

I notice this is your first post, so welcome to the Org. May your posts be many. :)

[porshiepoo]

I have recently been recently by a Rheumatoidologist been diagnosed with Fibromyalgia, although i have known for quite some time that i had it.
Fibro is a VERY painfull condition that effects all the joints and muscles in the body and is horrible to live with. It also causes extreem fatigue and confusion.
Is there anybody else in Caithness been Diagnosed with this terrible condition?? Or is there a support group out there already that i just dont know about ??
If you can help Thanks x :)


You have my sympathy. I was diagnosed with Fibro approx 7 years ago (probably a secondary condition as I also have Narcolepsy).
It's an extremely debilitating condition that can leave a person unable to even get out of bed sometimes and the pain can be excruciating.

There is a social group on here for Fibro/CFS etc but to be honest I don't think many people use it. I started it so I drop in regular but no one ever seems to go in there.

[craftinglass]

You have my sympathy. I was diagnosed with Fibro approx 7 years ago (probably a secondary condition as I also have Narcolepsy).
It's an extremely debilitating condition that can leave a person unable to even get out of bed sometimes and the pain can be excruciating.

There is a social group on here for Fibro/CFS etc but to be honest I don't think many people use it. I started it so I drop in regular but no one ever seems to go in there.

thats a shame.... were there many people in the group ??:)

[porshiepoo]

Only about 9. If you click on community and then social groups you'll find it in there.

[Angela]

I also have fibromyalgia, and I agree that it's a very painful and debilitating condition. Must admit I'd forgotten all about the group....it's that fibro brain fog!;)

I'll take another look at it. Recently I've found out quite a bit more about fibro via my son -his M Sc research has taken him into that area quite by chance.

The medical professionals I've seen have been unable to help me, but some complementary therapies are proving useful. By learning to accept the fibro and finding ways of living with it, my life is much, much better than it was even a year ago. :)

[catran]

I also have fibromyalgia, and I agree that it's a very painful and debilitating condition. Must admit I'd forgotten all about the group....it's that fibro brain fog!;)

I'll take another look at it. Recently I've found out quite a bit more about fibro via my son -his M Sc research has taken him into that area quite by chance.

The medical professionals I've seen have been unable to help me, but some complementary therapies are proving useful. By learning to accept the fibro and finding ways of living with it, my life is much, much better than it was even a year ago. :)

I personally lknow three people with this problem. Doctors appear to be reluctant to acknowledge this illness for some reason, does anyone know why?

[Angela]

I personally lknow three people with this problem. Doctors appear to be reluctant to acknowledge this illness for some reason, does anyone know why?

That would include my own GP, catran, who initially told me fibromyalgia was 'just a fashionable word'. :roll: I wish!!! Hard to get a diagnosis when someone believes you can't have an illness, even when you have all the symptoms, because that illness just doesn't exist!

My mother, aunt and grandmother all suffered from what was then known as 'fibrositis' but the focus then was on treating the pain and the other symptoms were not really recognised.

I think some doctors find it hard to deal with as there is no cure and in many ways the best way to deal with it is to find what helps you as an individual.

I've found that younger doctors know more about fibro and are less inclined to dismiss it, but it's taking a while for it to be accepted as a 'real' illness:( There's a lot more research into fibro now however, especially in the US, where it has been widely recognised and researched for some time.

[Sandra_B]

I was diagnosed about 15 years ago. I think the worst bit is looking perfectly healthy but being unable to do a lot of stuff without pain.

[porshiepoo]

My doc was also reluctant to diagnose Fibromyalgia. Instead he tried to just lump all the extra symptoms onto my Narcolepsy as they're very similar but the doc here got me to see a Rheumatologist and he diagnosed Fibro. It's probably a secondary condition to the narcolepsy.

Over the years I've managed to learn to cope with it. I've learned what I can and cannot do and I've learned what to avoid so that I don't end up too fatigued to move for a few days.
I still get 'bad' days but the pain is the hardest thing for me. I get no restorative sleep because of the Narcolepsy which means that my body doesn't get time to repair as it should hence extremely painful joints.
Exercise has helped no end with a lot of the symptoms especially IBS and Depression but it's taken me years to figure it all out and I still get it wrong sometimes.

A local support group would be great. I think there are many people in Caithness that suffer with this silent disease and I honestly believe that it takes another sufferer to understand it.

[craftinglass]

[quote=Angela;710816]That would include my own GP, catran, who initially told me fibromyalgia was 'just a fashionable word'. :roll: I wish!!! Hard to get a diagnosis when someone believes you can't have an illness, even when you have all the symptoms, because that illness just doesn't exist!

The doctors and consultants now HAVE to recognise Fibromyalgia, as it is now by medical law a definatate condition, and there is now a specific criteria and medical guidleines they have to follow.There are also specific drugs made now to treat this condition.
A lot of the time it was igrorance, or plain just not knowing that made the Dr's not bother their arses to try and help patients who were suffering.
I can remember as a wee girl my grandad being bed ridden and all he could do was walk to the bathroom, some of the family said he was just lazy but i bet the poor soul had ME or CFS we just don't know.
I think i would be a brilliant idea if a Fibro support group was set up in Caithness, to many people are suffering in silence....

[Beat Bug]

For some years now I've had problems with neck, shoulder and upper arm pain. Moving about, and especially getting out of bed, was difficult and painful. My sister said it was Fibromyalgia, so I mentioned it to my doctor, who confirmed the condition. Knowing that you have a known condition, and that you're not alone, makes it easier to manage. And you can have a laugh at the fibro fog!

I think a support group in Caithness is a great idea!

[onecalledk]

my late mother was diagnosed with this condition and suffered with it for many years. Her doctor recognised the condition and she had no problems with it getting diagnosed. She was advised that it was probably hereditory and thinking back my gran (mothers' mother) suffered with it also.

It can be difficult to have a condition that is not "obvious" to those looking at you, mum found that a little exercise daily helped her and she was an avid gardener.

She joined a support group which I think was a national group not just a local one as I remember her getting regular newsletter and updates posted to her.

K