Made the connection.

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Made the connection.

Postby mellabella » Sun May 01, 2011 10:56 am

Hi, As some might know, My eldest son has been unwell for about 4 years.

As a child diagnosed with ADHD and about 4 years ago he suffered a breakdown and has not been well since with numerous problems ranging from vestibular migraine to chronic tinnitus to pain fatigue and much more.. anyhow long story short.. for the past year since i got dx with fibro, i have noticed many illness similarities between us although he seems to have it constant and chronic with many more mental , emotional and physical symptoms whilst i have it from moderately to chronic flair up and back.

I've spoken to him about the possibility he has fibro but up until a few days ago he didn't want to know about having another " label" added to his list of diagnosed conditions however a few days ago we were together in front of the computer and he was talking about the latest set of symptoms to beset him - Chest pain around his breast bone which i suggested might be condro whatsit! and he agreed it did sound like that.... and so i told him to list what was most prevalent and i typed them into google... It came up with M.E. / CFS

We read quite a bit about it that night and watched peoples You tube experiences of it.. he was so shocked and so am I as he hit every criteria for the condition.. I also did the pressure point fibro thing on him and whilst most of the points hurt not all did. He was quite freaked by that as even after i stopped pressing the pain continued to slowly increase until it became really intense. He'd noticed this sort of pain before but as with everything else it just didn't register with him that it was not actually normal. and was shocked that it happened at these particular points on his body

I don't know why i didn't make the connection before.. sure, i thought he had fibro but i just though ( like all the other health professionals he has seen ) that everything else he was suffering was due to his mental state and stress and anxiety. Now i am more than convinced he has M.E and has had it undiagnosed for the last 4 years.. I feel so guilty for not making the connection sooner. As a child diagnosed with adhd he was always so dramatic and unable to explain himself properly and as an adult nothing has changed there, he is still very vulnerable in that respect and possibly is borderline autistic too.

Does anyone know of any clinics in this country that specialise in diagnosing M.E.. In wales preferably, I have no faith in the docs we have already seen. Why hasn't anyone made this connection before? he's seen neurologists and psychiatrists and many G.P's.. he's been under the care of a mental health team for 4 years and all their conventional ways of trying to help from therapies to support workers have not made any difference to his life at all.. they believe he is obstructive and uncooperative and simply afraid of getting better in case he looses his identity and has to face reality.... when all this time he's been incapable. He has always refused to take medications saying he can feel his body reacting to them and that they make his tinnitus go beserk.. and they say he is being un - cooperative. and now we read about how Meds can make M.E worse in some people.

I just want to side step them all now and get a referral to an M.E clinic even if i have to sell everything i own to pay for it privately. So if anyone knows of anything that can help us get a DX for him.. or even to see a specialist that can rule it out completely.. but it has to be someone who actually knows about M.E.... I feel so upset by this..

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Re: Made the connection.

Postby Ldyalb » Sun May 01, 2011 3:50 pm

Don't feel guilty, things creep up on us and we don't always realise.

I wasn't diagnosed with dyspraxia until I was 21 (am 22 now so not long ago). I saw numerous Drs, was in hospital for several years as a small child under the care of paediatricians, saw psychologists the lot. Was even investigated for stunted growth!! None of them noticed I had dyspraxia, or hypermobility. I have borderline ASD and Dyscalculia as well. I also suspect Dysgraphia and Hyperlexia. These were not picked up, unfortunately these things happen. As awareness grows hopefully it will happen less and less.

I think next step is to send your DS to your GP, I know you said you'd rather bypass them but they've been shockingly dismissive - your DS has a Autistic Spectrum Disorder, he doesn't communicate in an NT way and they need to accept that. I don't know of any ME clinics but I'm sure there will be posters who do know. Your GP should hopefully refer your DS when you explain why you think it's necessary. If not complain, and hopefully by then you'll have found a clinic. It might be worth posting on an ME specific board to find out more about avenues for help?

As a sidetrack - which part of Wales? My Mum was born in Bangor, raised in Holyhead :wave:
'Think of all the beauty still left around you and be happy' - Anne Frank

TMJ, RLS, HMS, Fibro, Dyspraxia - ASD + Dyscalculia overlap, Eczema + Rosacea + suspected Psoriatic Arthritis.

Being an Adult is nothing like it said in the brochure...!
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Re: Made the connection.

Postby denys » Sun May 01, 2011 9:27 pm

The tender point test should only be carried out by qualified practioner, but that said I think you ought to get your son seen be a doctor and referred from there. Unless going private most consultants dont take self referrals and I havent heard of a clinic specifically for ME/CFS If you arent happy with your docs, I'd look for another surgery.

If you arent sure about finding another then maybe ask your local support group or local hospital for a fibro/ME/CFS friendly doctor. :fingerscrossed: your son gets some answers soon and :goodluck1: with getting the crrect diagnosis

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