Hi new here i have fibromyalgia and EDS among others

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Hi new here i have fibromyalgia and EDS among others

Postby cavailia » Fri Jul 29, 2016 11:44 am

Hi I am a 42 year old lady and have suffered with joint pain aching legs etc since i was 11 years old but i was only diagnosed with Ehlers-danlos syndrome and fibromyalgia in june 2016.
I went through the usual its growing pains, then in my teenage years its just hormones. things got worse i was then diagnosed with arthritis at 35 even though all my joints are always clear on xrays and treated for that told lack of sleep memory loss was depression .
I only got diagnosed by accident i suppose . My youngest son (i have 5 children) was diagnosed with severe ADHD, autistic spectrum condition, dyspraxia and hypermobility. my daughter also has dyspraxia and hypermobility and my eldest son dyspraxia. Anyway it was my sons doctor that when taking family history said are you sure its arthritis as I would say its more likely EDS.
So i went to the doctors and asked for a referral on her advice.
Took 3 months to get an appointment but i saw the rheumatologist and he said you have to score at least 5 points to be diagnosed with EDS and that fibromyalgia often runs along side it. I scored 8 out of 9 points for eds and he diagnosed me with both EDS and Firomyalgia and sent me on my way with a list of things to ask my gp to refer me too.
so here I am after 31 years in pain at least i have an explanation as to why i have the problems i do i am now waiting for an echo cardiogram, physiotherapy, occupational therapy, podiatrist, and ibs clinic among other things. I am at the beginning of my journey after diagnosis and hoping that i will get some help and relief and no longer be housebound.
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Re: Hi new here i have fibromyalgia and EDS among others

Postby *Lisa* » Sat Jul 30, 2016 11:58 am

Hi & :welcome: to the forum.

I hope you manage to now find some help after all this time!
As a Public Moderator & Admin of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia...Lisa
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Re: Hi new here i have fibromyalgia and EDS among others

Postby LindyM66 » Sun Jul 31, 2016 5:16 pm

Hi Cavailia,

The good thing about having a diagnosis, is that you can access treatment. Without a diagnosis, I felt my GP palmed me off.
Fingers crossed you get sorted with a treatment plan to help you soon.

Much Love
Lindy x
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Re: Hi new here i have fibromyalgia and EDS among others

Postby Nancypop » Wed Aug 10, 2016 9:54 am

Hi to all of my fellow fibro sufferers, I'm 44 and have been diagnosed since 2014, the usual story, back and forth to the docs thinking I'm mad, every couple of weeks for months with endless aches pains, stabbing burning you name it. Was so relieved to get a diagnosis. But then where does it leave you? It seems nobody else believe this chronic life debilitating sndrome exists.

So you leave the rheumatologist with a leaflet in your hand.....what good is that? So back to the Dr's to try the endless medications, to the pain clinic to see a physio who said "it's all in your head, you need to exercise more " Then off to the head doctor who sits and listens to how your not coping. Counselling has never worked for me.

Then on to the best part, your claim for Pip, usual story, filled in forms, had an assessment with Atos, refused Pip, manditory recon still refused. Reports asked for from Atos.......oh my God what a bunch of crap. Liar liar liar. So went to CAB brilliant organisation took it to tribunal and won!! But now it runs out this October, so having yet another assessment thus Thursday 11th. I am going to ask if l can sit next to assessor so l can see what he /she writes about me, l should be allowed. Anyway sorry for long intro. I will let you know how l get on.
P's. Has anybody else re-applied for Pip and been successful after taking first claim to court. Soft hugs to all my fellow fibro friends. :-)
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Re: Hi new here i have fibromyalgia and EDS among others

Postby LindyM66 » Wed Aug 17, 2016 6:34 am

Hi Nancy,

I had a PiP assessment yesterday. The person was very nice, or at least, presented that way :-) I was sitting where I could see what she was typing into the form, but who knows if she added anything when I left. What a suscipicious mind I have eh :-)
Anyway, 6-8 weeks for a response apparently. I have no expectations at all. But my "parting comment" was, " Can I access a copy of your report, should I require it?".
Her parting comment was " I love your crutch, it's amazing". ( I blinged it up).
I hope someone can share their experience of appeals with you, as I might be asking you for info haha! Oh, you have to laugh huh.

Much Love
Lindy x
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