Finally after 2 years a diagnosis,,,y... - Fibromyalgia Acti...

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Finally after 2 years a diagnosis,,,yipppeeeee

Tinkywinky profile image
22 Replies

After numerous blood tests, and two 10 week sessions of physiotherapy, changes in medication, etc, the Rheumatologist today has finally diagnosed me with Fibromyalgia, my mom had Lupus and was diagnosed back in the late 1960's, and many relatives on moms side were diagnosed with RA. But it feels a relief to finally be told what she is confident it is that I have.

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Tinkywinky
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22 Replies
rosewine profile image
rosewine

It is such a relief isn't it to at last get a diagnosis so hopefully now you can get the correct treatment.😄

stumpedok profile image
stumpedok in reply torosewine

A diagnosis is a double edged sword in the case of Fibro. ...big name, cause unknown (just theories), confusion over how best to treat, what works for one doesn't work for another, etc.etc. As a long time sufferer and getting worse I am feeling somewhat jaded. It's a lottery over pain medication and who you believe. For those like me with significant fatigue issues I'm dammed if I know how to treat the fatigue aspect, along with the general ill feelings that come with it. Nothing seems to be shifting it. Any one any ideas?

rosewine profile image
rosewine in reply tostumpedok

It is awkward as as we know alot of the meds that are usually subscribed for fibro can cause a feeling of sleepiness and being out of it so sometimes you don.t know whether it is the fibro causing the fatigue or the meds.x

stumpedok profile image
stumpedok in reply torosewine

I know it's not meds as I'm not on any (stubborn sod)!! But I wonder if just the continual coping with various pains inevitably brings on a relentless fatigue? I'm feeling all out of answers at mo! All I want to do is sleeeeeeeeppppp!

rosewine profile image
rosewine in reply tostumpedok

I think the body and brain does get exhausted in trying to cope with the persistant pain it just wears us down in the end and of course if it keeps waking you up at night so you get no rest that adds to it.x

Tinkywinky profile image
Tinkywinky in reply tostumpedok

I'm sorry to hear about the long term issues you have, but thanks for the reply it is appreciated

Poppy-poppy profile image
Poppy-poppy in reply tostumpedok

Hi, I'm the same when I read that some people can go to work and walk dogs I feel that I'm not trying hard enough and that I should be able to do more than I do because I was so active before this horrible illness hit me like a two tonne truck I used to be on the go from morning till night and now if I just peel some veg for my husband and myself my hands are aching, my back is aching and I'm just whacked and have to sit down with feet up and hot water bottle, I really grieve for the person I was and the person that I have become is someone that I cannt really come to grips with, but I know that if I go beyond a certain point I will be poorly and I just cannt cope with the pain and complete exhaustion of it all . So it's all about pacing and knowing your limitation, best wishes

Tinkywinky profile image
Tinkywinky in reply torosewine

Thank you

mattoid-mags profile image
mattoid-mags

Wishing you well Tinkywinky x

Hurtingmom profile image
Hurtingmom

Wishing you the best. A diagnosis doesn't always mean a solution but at least it is something. When a dr wrote mine all off to anxiety, I thought if you felt like this- you'd be anxious too! Seeing that I have spine issues, nerve compressions and that my surgeon thinks it is fibro and sending me to another neurologist- I don't feel well but now there are other avenues to pursue

Tinkywinky profile image
Tinkywinky in reply toHurtingmom

I can see why you are anxious, I do hope you receive a correct diagnosis in the not to distant future.

Tinkywinky profile image
Tinkywinky

I have little in the way of Dr visits re the fibro, as I gave to go regularly for medication updates as I have CHD, I have been prescribed Amitryptiline, and Hydroxychloroquine 2 x 200 mg and Tramadol as and when required. Thanks for your reply.😄

Sorebones profile image
Sorebones

Hope you get some relief now that someone has put a name to your symptoms. I was so pleased it wasn't all in my head x🐸

stumpedok profile image
stumpedok in reply toSorebones

Am I unusual for never thinking it was 'all in my head'?

SDWSoo profile image
SDWSoo in reply tostumpedok

No, I knew it wasn't all in my head. The pain is very real.

Sorebones profile image
Sorebones in reply toSDWSoo

I was told it was all in my head by a Dr. So nice to know he was wrong. Needless to say I changed Drs 🐸

stumpedok profile image
stumpedok in reply toSorebones

Sensible woman!

Fibrofoggiest profile image
Fibrofoggiest in reply tostumpedok

Certainly not alone, I spent over 25 years thinking I was going mad, and that it was all in my head. The relief when I finally got the proper diagnosis was phenomenal!!

Sending lots of positive healing vibes your way 😀

Foggy x

stumpedok profile image
stumpedok in reply toFibrofoggiest

Wondering what it was that made you think it was 'all in your head'?

Wishing you the very best Tinkywinky :) xxx

TheAuthor profile image
TheAuthor

I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

Rainbow_Chaser profile image
Rainbow_Chaser

I know exactly how you feel! Especially when you've had no explanation for so long & suddenly your symptoms have a name! I was just relieved that it wasn't all in my imagination, as some doctors would have you believe!

I too have relatives with lots of Auto-immune Disorders like RA, Fibromyalgia, Arthritis, Rheumatism, Hashimoto's Disease, Thyroid Disorders & Asthma, Eczema, Allergies & MS.. others too but not in the same sort of category. I am still of the belief that there is a connection & a hereditary one too.

As you say, at least now you have a treatment path you can follow. Yours will be a personal journey, as everyone has different needs where Fibro is concerned!

I remember the joy I felt too, as I thought I had RA like my Mum & I really didn't want to have to follow the same treatment path as her! Having said that, I have found that as time goes on, my condition has got worse & I suffer just the same! I cannot have any treatment or pain relief because I have a serious Heart Arrhythmia & Asthma too, which prevent me from being able to have safe treatment.

So pleased for you though & make sure you access all the available treatments & support... that will really help with your journey.

Debs <3

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