In process of diagnosis, advice please? - Fibromyalgia Acti...

Fibromyalgia Action UK

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In process of diagnosis, advice please?

Daisy- profile image
24 Replies

Hi there. Am very new to the board but hoping I'm in the right place for a bit of advice. A specialist thinks I have this, but I don't think I have 'widespread pain', as seems to be the way it's described in much of the info I'm reading about symptoms.

For a number of years I've been having pain in my feet when walking (can't last a more than 1/2 hour on my feet without hurting and a day on my feet at work leaves me in lots of pain); my knees collapse and give way due to weakness/ some reason I can't explain (I've noticed this is worse when I have anxiety/lots on at work), ; pain in my arm and wrist and hand - no strength to turn the steering wheel, or carry things. So tired I worry about not being fit enough to have children one day.

It's getting to the point where I know if I'm on my feet for a while I have to take co-codamol and im exhausted all the time.

I've had an MRI scan and nothing shows up. My worry is that it might be a muscle problem, or an impingement that isn't seen. But that doesn't explain everything.

I was wondering if anyone else recognises any of what I'm experiencing, if it sounds like I'm researching/looking at the right diagnosis, place?

Any insight would be really appreciated.

Thanks very much

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Daisy-
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24 Replies
Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff

Hi daisy and a warm welcome to the forums.

Please take a moment to read through our rules and guidelines if you have not already done so.

Your symptoms do sound as if they could be fibromyalgia but as we are not medically trained obviously cannot say for definite. You mention pain in a couple different areas ... some people with fibro find their pain is in specific areas. If both feet and both hands are painful ... that meets the criteria of pain in 4 quadrants of the body which is classed as widespread pain.

A suggestion would be to order a patient booklet at fmauk.org/resources ... where you can highlight anything which you feel applies to yourself ...and it may give you a better idea xxx

Daisy- profile image
Daisy- in reply toHazel_Angelstar

Thank you for the welcome and the link. Will defo get a booklet now. Interesting about the pain in 4 quadrants, yes I have that as it switches between one arm to the other. Could never really explain that.

Thanks for responding x :)

Hazel_Angelstar profile image
Hazel_AngelstarAdministratorFMA UK Staff in reply toDaisy-

Pain that moves about the body is typical of fibro. This is because the pain is not caused by a physical injury to the body ...but by the pain signals being overactive and wonky ... but the booklet explains it all xxx

Daisy- profile image
Daisy- in reply toHazel_Angelstar

Thank you, I think that's the bit I'm trying to get my head around. I automatically think the pain is something I've 'done'. Looking forward to the booklet...just ordered it xx

Dizzytwo profile image
Dizzytwo

Hi Daisy- I would like to wish you a very warm and happy welcome to the group. xx Mo

Daisy- profile image
Daisy- in reply toDizzytwo

Thanks very much, that's really kind. Glad I found it! looking forward to being on here xx

Daisy- profile image
Daisy-

Thanks Soo, I think this will be a useful place for me.

I never linked my fatigue and the pain together - but the more I read the more I'm starting to see how it's all connected.

Learning lots and trying to understand it. Thanks for your reply.

Dxx

mysmugcat profile image
mysmugcat

Hello Daisy :)

Daisy- profile image
Daisy- in reply tomysmugcat

Hi Mysmugcat 😊 Happy Saturday!

Daisy- profile image
Daisy-

That's really nice of you, and reassuring to know - as this is all so new. Thanks ever so much Soo. xx

Flyby7 profile image
Flyby7

Hi and welcome it sounds like fibromyalgia that can make you fell tired and joints painfull have you been checked for signs of arthritis ask your doctor he will help you we all get these symptoms you are not alone we all help each other nice to have you on there fourm all the best

Daisy- profile image
Daisy- in reply toFlyby7

Thank you for the lovely welcome. I'll ask the doctor about arthritis. Think they are a bit stumped with what it could be after the MRI scan didn't show anything up. Would be good to get to the bottom of it, as feels like it's only getting worse. Thanks for your suggestion 😊

Sueculver profile image
Sueculver

Hi daisy I'm new to the site too however had diagnosis 5 years or so x my problems started with my feet too x but if your not happy with diagnosis seek a 2nd opinion x

Daisy- profile image
Daisy- in reply toSueculver

Thanks very much, good to know about your feet too :) I've another appt at the specialist - think they've tried everything else - fingers crossed they can diagnose this time, and then I can move on x

milo4 profile image
milo4

Hi

Welcome to our lovely forum.

Trace xxx

Daisy- profile image
Daisy- in reply tomilo4

Thank you, such a welcoming place xx

Hi, when I read about your knees collapsing and give way, I thought it could be Ehlers Danlos/ hypermobility syndrome. But it's possible to have that and Fibro together. Just read up about it on google and see if you recognise yourself into the symptoms. I hope you find out what you have and get the right diagnosis soon. Take care 😊.

Daisy- profile image
Daisy- in reply to

Thank you 😊 I'll look that up and have a read. The knee thing is really unpredictable....and a bit worrying when it happens unexpectedly. Appreciate your suggestion, going to have a Google now 😊 x

in reply toDaisy-

Yes it's horrible when your joints give way. My knees don't do that but it happens to my ankles and hip a lot. Physio therapy might be the best solution for your knees, or otherwise taping or a brace could help.

Take care 😊

Daisy- profile image
Daisy- in reply to

Oh gosh, that sounds painful in your ankles and hip! I read it can happen more when tired or under stress, but I never made that connection before as I always thought it was muscular or an injury. Interesting reading, and thanks for the tip- I'll ask the doc about Physio. You take care too :)

in reply toDaisy-

I have never heard about the connection with stress before, I do know that there is definitely a connection for me with my hormone levels

"The study suggests the risk of injury is linked to fluctuating hormone levels which affect the muscles and ligaments. Both tissues appear to be vulnerable midway through the menstrual cycle, while the ligaments are at greater risk at the end"

Hope the doctor will be helpful for you

Jaqs2017 profile image
Jaqs2017

Hi Daisy- the symptoms you describe mirror some of mine, knees, feet, etc....amongst others...I wish you well on your journey and welcome you to our lovely and very informative forum. Hugs ☆

Daisy- profile image
Daisy- in reply toJaqs2017

Hi Jaqs, ahh it sounds as though I'm in the right place (and I'm not imagining what I'm experiencing). Thank you for your warm hugs and welcome. I think I'll be on here a fair bit! Really insightful and reassuring people here, thank you 😊 x

Susat80 profile image
Susat80

I have the same with both feet and hands, lower back but haven't had any injuries to each place causing pain. I have no redness or swelling in any joints and soft tissue pain. Still waiting for diagnosis. Just wish it would go. As it's the time I plan and want so much to sell flat and move abroad

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