Title: My partner has fibromyalgia at 39 - age discrimination
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EmmaC
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(Date Posted:26/07/2011 2:02 AM)
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Hello all,
my first post here, I found you via the wonderful benefits and work site, highly recommended if you are facing ESA, DLA, ATOS!

My biggest issue is that my partner is 39 and we keep facing 'but you are far too young to be disabled' even from GP's. My partner falls all the time and we asked about help from our GP and he again told us we were too young for any help. Not so, we contacted social services, he know has a walking stick, bath board, bed lift and when fitted a stair rail. 

Anybody else face this type of age/disability related discrimination?
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CrazyKim
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RE:My partner has fibromyalgia at 39 - age discrimination
(Date Posted:26/07/2011 2:41 AM)

Hi and

Unfortunately this is a very common problem, I'm only 20 and still fighting to even get a diagnosis.  I was told it was growing pains even for years after I had clearly stopped growing, and then dismissed as 'too young' to be in the amount of pain I was telling them I was in.  It has taken me till now to get a doctor who believes I am in pain, but still I have no diagnosis, and so little chance of getting any help apart from the constant pain killer prescriptions, which really aren't a great long term solution.

smiley81
I wish I could offer you some more helpful advice, but you have my sympathy, and I hope you can find an understanding doctor, you may have to go through a few
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jaimelicious
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RE:My partner has fibromyalgia at 39 - age discrimination
(Date Posted:26/07/2011 1:12 PM)

I was 25 when I was diagnosed with fibro last year. I get this a lot. been told by NHS physio that I'm 'too young' to need a walking stick and to stop using one - but that he won't record that as his official advice in case I fall and get hurt and he gets blamed.

its taken me coming up for 18 months to get any pain medication that vaguely works, and I had to change GP to get it. my old GP promised referrals to a fibro specialist, someone who could check for EDS, specialist physic, a neuro second opinion, and occupational therapy. I hot one, which was is the physio mentioned above. the rest she just lied about.

I often get abuse when using my blue badge, my housing association constantly refuse to make adjustments because they say I'm top young to be disabled, I get abuse in the street for being a fake and a benefit scrounger - and at the same time, I get disability-related abuse off all the local 'children', culminating in a brick through my bathroom window this weekend.

good news it's not just you... bad news it doesn't make it any better.
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EmmaC
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Re:My partner has fibromyalgia at 39 - age discrimination
(Date Posted:26/07/2011 3:29 PM)

 Hi thanks for the replies,

getting a 'proper' diagnosis can be very difficult. My partner, Robin, who is going to join ouch too also, had to see a few specialists's before, finally, the second rheumatologist gave the great news, but he said he'd just have to get on with it. This diagnosis was made after a process of elimination and Robin has had problems since childhood. It then took forever to get the proper medication and further referrals to neurology before a referral to the pain clinic. The GP kept on prescribing anti depressants. Whilst depression is certainly a part of fibromyalgia, it is not the cause. Anybody who is in constant, or near constant pain/agony,protracted insomnia, tiredness, falls, dropping of things like hot tea near children, IBS is bound to feel a little low on some days and seems quite a reasonable and sane reaction to the situation. In fact the anti depressants caused detrimental side-effects. 

The GP only referred him to the pain clinic when I told the GP I was leaving with the kids because I couldn't handle how the medications were making him behave, which was very verbally aggressive and Robin is NOT normally like that. This caused Robin great distress. thankfully the GP did then act and the referral was made and the bad medicine stopped. The pain clinic has a protocol to follow, which at times seems protracted, but they need to see what works or doesn't etc and also I think to believe what you say.

Things are not perfect but at least we have a 'proper' diagnosis and better medications. I believe you can request a referral by your GP and Guy's Hospital have a Fibromyalgia Clinic and this is an option we are considering. I hope I am allowed to add links as I am about to for the NHS clinic http://www.fmsclinic.co.uk/locationsNHS.html . If this is not allowed I apologise, but it is for NHS.

Sorry to go on so long, but it is such a !!!!!!!!!!!!!!!!!!!!!!!!!!!!
Much Love Emma
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devineDeb
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Re:My partner has fibromyalgia at 39 - age discrimination
(Date Posted:26/07/2011 4:33 PM)

just a quickie

if you are in the UK, feel free to remind people - especially in the NHS - that age discrimination is illegal - as of course if disability discrimination - both now covered by the Equality Act (2010).   Age discrimination can occur at any age, so it could be "you're too young" or "you're too old" for this.   

You might also want to remind them that some impairments are genetic - but don't show up til you are teenage or some other age....   I don't know if EDS is genetic, but just reminding them it is possible might help...

Next time the physio says you should manage without a stick: ask him / her if they would ever suggest that a young adult with a spinal injury causing total paraplegia should try to manage without a wheelchair..... how is you using a stick to meet your need any different?

regards, Deb



 
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jaimelicious
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RE:My partner has fibromyalgia at 39 - age discrimination
(Date Posted:27/07/2011 3:07 PM)

deb - I tried. the NHS inevitably dismisses me because of my mental health history.

I give up. the NHS are bloody useless and incredibly unpleasant for the most part, as far as I can see. compassion and healing my arse, they're as bad as everyone else - except it's worse because they have all the knowledge available to them to be better.
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jaimelicious
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RE:My partner has fibromyalgia at 39 - age discrimination
(Date Posted:27/07/2011 3:12 PM)

deb - I tried. the NHS inevitably dismisses me because of my mental health history.

I give up. the NHS are bloody useless and incredibly unpleasant for the most part, as far as I can see. compassion and healing my arse, they're as bad as everyone else - except it's worse because they have all the knowledge available to them to be better.
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devineDeb
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Re:My partner has fibromyalgia at 39 - age discrimination
(Date Posted:27/07/2011 6:04 PM)

 sorry to hear that jaimelicious!

by the way, is there some reason why your posts seem to be coming through twice?
regards, Deb


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devineDeb
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Re:My partner has fibromyalgia at 39 - age discrimination
(Date Posted:27/07/2011 6:07 PM)

 had a further thought: have you considered getting an advocate to speak for you and your partner in this?   Search "advocacy service" for possible ones in your area....
regards, deb
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EmmaC
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RE:My partner has fibromyalgia at 39 - age discrimination
(Date Posted:28/07/2011 5:24 AM)

We have had to get our local MP involved in our benefits claim as the DWP also do not seem to understand the limitations of this condition. Everything is an uphill battle. 
I am so sad to hear the levels of violence and hate being hurled at jamielicious. It is outrageous. I feel so frustrated. 


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jaimelicious
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RE:My partner has fibromyalgia at 39 - age discrimination
(Date Posted:28/07/2011 2:33 PM)

sorry, it's a problem when i post from my phone - i try and remember to fix it, but i don't always!

honestly, sad as it is, you can get used to almost anything, more or less, given enough time...
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Mabelcat
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Reply To EmmaC
(Date Posted:12/08/2011 11:47 AM)

Reply to EmmaC (28/07/2011 12:24 PM)

We have had to get our local MP involved in our benefits claim as the DWP also do not seem to understand the limitations of this condition. Everything is an uphill battle. 
I am so sad to hear the levels of violence and hate being hurled at jamielicious. It is outrageous. I feel so frustrated. 




Hi Emma,

I have fibromyalgia as well and it's a very frustrating condition.  Just a quick note - don't dismiss the anti-depressants out of hand.  A secondary use for some of them is for the management of chronic pain and some people find them really helpful.

Good luck with everything and welcome to Ouch too.

Kate

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auntieCtheM
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RE:My partner has fibromyalgia at 39 - age discrimination
(Date Posted:17/08/2011 8:25 PM)

Welcome to the fibromyalgia branch of Ouch Too.
There are quite a few of us on here, and we all sing from the same hymn-sheet.  Your story is the same as everyone, me included.

All the medication has side effects.  Some we learn to put up with.  Others when we need the pills the only way to manage is to take the pills and suffer the side effects, then for a few days stop taking them and have a few days relief from said side effects.  When the situation gets unbearable start taking the medication again.  Round and round.

Personally the thing that affects me most in term of life, is the extreme fatigue.  I start things but can never finish because I have to go back to bed again.  However, I do like being asleep, even if it is when I am in the daily bath.  Oh yes, the bath.  Wonderful pain relief.  Soak for half an hour in warm water with something that smells nice - bubble bath stuff I mean.
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