Doctors/specialist- DLA

[Oceandeep]

After suffering from bad doctor syndrome for years! ( oops! sorry, that was meant to read bad Fybro for years!) I was trying out for DLA ( to no avail, I may add *sigh*) and I'm very lucky that one of my neighbours works for DLA and the appeals system. She told me that - "You need 2 major things on your side when going for DLA" You need your partner/hubby/wife on your side and more importantly, you NEED your doctor on your side. She then said something that never really occurred to me. In her words. "why are you loyal to your doctor? He's not loyal to you!" Wow! it was a wonderful moment! I, like most people in the UK..don't like change. So I went to my doctor and asked him 'OFF the record' what his PERSONAL thoughts were on Fybromyalgia Syndrome (FMS)..His reply summed what most 'older' doctors actually think of us hypochondriacs! he said. " Pain in the head, is pain non-the-less"....Hmm? Really? From that very moment, I knew, there and then, he had to go. I found a wonderful doctor. He's Spanish. If you're lucky enough to have a surgery near you with a Spanish Doctor..I'd highly recommend changing to him/her. He's compassionate, caring and 'hears' what I have to say..and treats me like the adult I am. Did you know that in Spain, Fybro is taken seriously and they even have clinics for the disease. Also, I have a wonderful pain specialist. he'll sit and listen to me ramble on ( as you can see..lol) and I'm always in there about 2 hours. He's another one who knows that I research all the new papers on it..and that 'I' know more about MY pain than he does. After-all all pain is unique, no? So it's not so much a question, but I'm a newbie here and wanted to give a little advice. I'm still in pain..but always open to what they both have to say, mainly because they don't treat me like I'm an idiot who's just making it all up! So, who also has a good doctor? ..any tips for those out there who suffer at ignorant and uncaring doctors? *gentle smile*

[MissKittycat]

Funnily enough, I am seeing a new doctor for a double appointment today. I wanted to see someone re coming of some meds, and couldn't see my regular doctor so got to see him and he wants to see what he can do to help instead of just throwing pain killers at me. He is from Greece - don't know what the situation with fibro is there, but he seems interested...

Sometimes it helps to see someone different to see what they can do to help!

Gentle hugs xx

[Hidden]

Ive just changed my gp after being with the same surgury all my life, Ive had my meds changed, seen the new gp and also had a phone call from her, I took my forms for claiming dla which were refused, I took old med notes, my social worker has spoken to her and given her my assessment, so Ill wait and see to see if she s any good

[AmandaJane43]

I was diagnosed in January 2011 after months of terrible pain in my arms and legs . At first my gp was great , i think she just thinks i am a burden now . Despite 150mg of amitryptiline and 400mg of tramodol a day i still seem to be getting worse. I feel like giving up . I have 2 boys aged 10 and 9 and they help me with things bless them . I have lost my appeal for esa and been refused dla so really don't know where to turn next . Am sure the worry is making me worse !

[Oceandeep]

Amanda ( and everyone) Thanks for the replies. I'm not claiming DLA...as I once tried and was humiliated to the point that I...well....let's just leave it at that shall we? lol. My doctor is SO good he'll even come out to visit me, if need be. I had to call him the other day..as I was at my wits ends. he kindly 'told me of' for not calling sooner..and I told him, that I only come-in or call as a last resort..he was shocked and told me that he should be my first port of call. Now he's not so hot in prescribing meds and has told me ( as well as my specialist) that amitryptiline isn't so good with treating FMS...and Amanda, 150mg..is a very high dose..careful with them hun..they make you gain A LOT of weight. and are hard to come off. Also, Tramadol will constipate you. I ended up in hospital and nearly died because of a blocked bowl. ( I threw-up for over 10 hours because nothing was moving and they just kept pumping the stuff in to me. The trick with any doctor..regarding FM...is to show them, and have the attitude that YOU know yourself and what works and what doesn't..and NEVER feel a burden...after-all, they get paid to be there for you. Good luck everyone. *gentle hugs all round*

[jazher]

Hi oceandeep,

So pleased for you with having a good gp, they are hard to come by.

I think my gp is ok with me as she did mention that i was welcome to come and see her anytime, but i am not sure yet.

I seen an immunologist called dr spickett couple of weeks ago and he was lovely and knew everything what was wrong with me, He listened and gave me answers to everything he could.

He has sent me a letter and everything i said is in the letter to my gp, so wayhay he did listen.

I am now getting refferd to a cfs clinic as i have that aswell as fibro and i am hoping they are going to be nice and help me with dla, fingers crossed.

Pleased to meet you take care kel xxx

[rubywhiplash]

Hi oceandeep wow what a lovely Dr you have really pleased for you,Must admit my Dr is lovely but not 100% where he stands re fibro I need to ask but forget when I go in!!! Good luck in getting DLA

Hugs Ruby xx

[Oceandeep]

Thanks Ruby. But I'm not getting DLA..tried years ago..and was humiliated to the point of wanting to die. Just wanted to share with everyone that your doctor is very important and if he's/she's not - then time to change! xx

[secretldy]

my doctor is terrible, i had a octor come out for the DLA and he has told me i have FMS, so i went to my doctor as the other one said i need to be referred to a Rheumatologist, when i asked my doctor i got told that it will cost too much money, so he has not sent me.

[Oceandeep]

The there really is only one thing left to you...change your doctor! ( and me, being me..I'd write to the local newspaper and tell them...they'd love a story like this. ( but if you wanna stay with your doctor..ask to speak to the medical or surgery manager. Or HEAD of the prctice. Explain what's been said and tell them you were told my another doctor to be referred. Good luck...so sorry to hear this terrible tale. *gentle hugs* x

[shetlandlass]

HI i am so lucky i have a great doctor she as taken the bother to find out as much as she can through her i got DLA also she got in touch with Ot who got me a wet room also a chair to get me up the stairs i couldnt get out of bed the other day and she came out and gave me an ijection of voltra that helped i cant take them by mouth as i suffer with acid reflux she as surgested surpositries i am going to try them monday i will let you know if it helps love to you all carolxx