Getting Dr's/specialists to recognise Fibromyalgia

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Getting Dr's/specialists to recognise Fibromyalgia

Postby mummy2427 » Sat Mar 10, 2012 11:15 pm

Hello

Im new to this. For the past 3 years i have suffered from chronic pain in my hip and back. Ive had MRI scans, X-Rays you name it done but nothing has ever shown up. My GP referred to me a specialist who was a arrogant prick (that is me speaking nicely) of him and has told me that he thought i was faking all my conditions and wants me to see a shrink.

I went back to see my GP who has told me i have this illness but i was wondering did anyone else have to go through all of this before they got the answers they wanted as I am hopin to go on DLA.

I feel the specialist thinks i am puttin it on when it couldnt be further from the truth i would love to return back to work but i simply do not feel :cry: well enough.

I would love it if someone can help me out


Thanks xx :-P
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby no1phil » Sun Mar 11, 2012 12:09 am

I have just been told i do not qualify for ESA after a medical by ATOS and although the social found it enough that they had to send me to ATOS for a medical even though they never contacted my doctor for her opinion.

When I was seen by ATOS it was not by a doctor but a nurse, and all she was interested in was if i had seen any specialists about my fybro and i.b.s, and not interested that my GP had already diagnosed these conditions herself by process of elimination. Not only that this nurse also said that there was no examination that could prove my symptoms which is completely untrue as i have official documentation that is sent to ATOS by the DWP telling them how to diagnose fybro.

When i went back to my GP and told her about them only wanting to know if i had seen any specialists she was annoyed. She also advised that going to a specialist when it comes to ESA/DLA assessments it can actually go against you. If your GP is certain you have fybro and they have diagnosed it, then you get sent to a specialist and they say different then they will only listen to the specialist and not your GP.

So i would recommend that you stick only with your GP if going to apply for DLA as if one specialist already says you haven't got it they will listen only to him and not your GP.

I am now going to have to claim income support but my doctor has no issues with just continuing to write me a sick line as she knows i am not faking and like yourself i want to get back into work but can't at the moment because of the effects i am having. I am also lucky to have such a supportive GP and one who is well trained in her profession (very few are these days).
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby mummy2427 » Sun Mar 11, 2012 2:50 pm

Thanks for replying back to me :-P its soo frustrating as i to was thinking about going on ESA. I was told y a few family members who has seen this specialist that he was arrogant etc but i told my GP that i wasn't going to give up as i know my body and i know its not right. Yes, like you my GP is good and will write me sick notes. Its very frustrating :-x as i know several people who are scamming DLA and making it harder for people like me and you.

I was thinking of asking my dr to send me to another specialist for a second opinion. What do you think?
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby shazq » Sun Mar 11, 2012 6:54 pm

Hi

As long as you have got your diagnoses than there is no point in asking your GP to send you for a second opinion, lots of Gp`s do dx fibro now.
like most of us fibro has affected our everyday living and if this has happened to you and you have your docs backing then apply for DLA. They will ask you to write down the doctors name who you would like them to contact so you dont have to mention that specialist in that part just put your GP`s name down.

We have lots of info on the DWP, works & benefits thread which might help you, any questions just start a new post in there. :goodluck1:
As a Public Moderator 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.
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby joey40 » Sun Mar 11, 2012 7:03 pm

UNBELEIVABLE!!!! who on earth do these ppl think they are saying that ppl fake it or its all in there heads. altho its not me who has fms (my partner is) iv seen 1st hand what its like for her day to day and its deffo real. it makes me sooooooooooooooo mad with others scamming the dla making it harder for the genuine ones gggggggggggrrrrrrrrrrrrrrrrr. im not nasty by any means but id love to see these so called proffesionals live even 1 hour in the life of fms rant over
all i can say is keep going guys
wish you all well today
joey x
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby shazq » Sun Mar 11, 2012 7:30 pm

It makes me so :evil: :evil: :evil: when the so called "specialists" say fibro is all in your head but what makes me laugh is there is a NHS web site on fibroymalgia so how come the docs who work for them dont agree with them :dunno: :crazy: :crazy:
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby mummy2427 » Sun Mar 11, 2012 9:41 pm

Thanks everyone ur comments have really helped me out alot :lol: .

It is soo frustrating as i know its not in my head. When i went to see the specialist i knew he was gonna be a prick :swear1: as soon as i walked through the door as even the nurse was rude. He asked me to walk up and down the room then asked why i was limping and when i said it was because i couldnt put a lot of weight on my left leg, i then lost my balance and grabbed the chair to stop myself falling to the floor because i have a lebral tear in my hip as well as Fibromyalgia. He then asked me to do the same thing again but this time the miserable cow of a nurse took the chair away (think she is in the wrong job) :twisted:


I am goona go to the shrink just so it cant get turned back at me saying i wouldnt help myself and i will go for DLA as i didnt ask for this illness :dunno:

Thanks to u guys on here u have given me the strength to keep fighting this so thank you all sooo much xxx :-D

Joey it also winds me up especially when i see them walking around braggin how they have got a car off the DLA, get so much every week etc but do you the best thing i challenged them about this and do u know the only thing the dr will give them is paracetomal for a pain relief so how they high risk DLA really does make my blood boil grrrrr :evil: :evil:
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby joey40 » Sun Mar 11, 2012 10:02 pm

hey mummy, yes i know what you mean. my partner lost her dla in 2009 and went for an appeal. had to go to sit front of 3 so called professionals for her to be assesed and they turned her appeal down there and then. i was in tears lol but she was so strong that day she was comforting me :oops: . she said she wuld nevr go for another appeal ever and waited 3 months bfore claiming again and low and behold got top rate on both. how they come to these decisions i have no idea when they dont even know what the illness is lt alone how it affects ppl
joey
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby mummy2427 » Mon Mar 12, 2012 10:41 pm

Its a joke eh Joey? I think people would have to be pretty sick in the head to make up this illness as its such a cruel illness. Besides i had never heard of it before my dr told me i had it hence why i have joined this page and it is proving to be very helpful and helping me come to terms with it.

Oh dont be embarrassed talking to u has made me realise even more so the impact this is havin on my husband so thank you :-P

Can i ask u a question though pls if you don't answer no problem what pain relief does your wife take and how old was she when she got diagnosed.


Thanks :-)
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby joey40 » Wed Mar 14, 2012 2:50 pm

.hi mummy sorry for the delay in getting back to you. she was 42 when dx in 2003.she takes cocodomol, amitriptaline gabapentine as well as stuff for migrain , ibs, indigestion etc etc. she not good atm, the break through pain is tremendous has beed like that for bout 3 weeks now. she trid lanacaine infusions last year but it didnt work. she very low atm. im struggling to keep her spirits up and im myself having hard time at a loss what to do really. she feels her independance is gone.she doesnt say much but i see with me own eyes whats its doing to her. shes no longr in control, its contoling her and i think she sinking and cant gt back up does that make sence????how dos your husband deal wth it all??? i do hope hs a big help to you . the docters dnt rally do much to help her anymore jusrt ssay the same thing when we visit specialist each year theres nothing more they can offer her as she on th rite meds for the condition. she hasnt much faith in the medical proffesion really i do try and sugest things she colud try but i supose i can cme across as patronising but its not intentional just trying to do sumat to help her u see???after all she the expert on fms isnt she

hope you are well today

joey
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby joey40 » Wed Mar 14, 2012 3:03 pm

and just to say no need to thank me. your right since joining on here its opned my eyes also. i look forward to reading posts and seeing what ppl want to share and unload best thing i done was join this forum its fab. lots of lovely and welcoming ppl on here with brill advice even for the partners off fms sufferers. awareness of this illness needs to be top of the agenda where medicals and gps are concerned. not enuf is known about it

xx
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby mummy2427 » Wed Mar 14, 2012 10:42 pm

Hello Joey

So sorry to hear your wife is so low at the moment, i can completely understand how she feels. I feel quite blessed that I haven't got time to be down in the dumps as i have 2 young children to keep my spirits up but its very hard when the pain gets soo bad.

I am doin ok apart from the new pills my GP has put me on don't seem to be working very well and i have to see him in a couple of weeks and im too scared to tell him as he has already said he doesn't know what else he can give me which i know is a lod of bull. I tried gadapentin when i was first taken ill with this awful illness and had to come off it as it made me hallucinate and even my GP calls it the devils drug as its such a horrible drug.

My husband sounds very much like you, tries to keep strong but sometimes i catch him looking at me with such pity in his eyes as he knows there is nothing he can do or there is no cure for this illness.

Im hopin my GP will send me to a specialist again as the last one had no interest in knowing about Fibromyalgia and basically told me it was all in my head and that i have to see a shrink :( .

I understand that it is hard for you but if your wife is anything like me when im in alot of pain i take it out on my husband which i know i shouldnt do and always feel guilty straight afterwards but they say when your in pain or upset you upset the people who love youthe most.


Keep strong Joey and i know you said i dont have to thank you but you are really helping me through this xxx :-P
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby joey40 » Thu Mar 15, 2012 12:55 pm

hey im gla to know im helping you thats nice to hear, yes she does take it out of me but i have to realise it not personal.im so glad for you that you have your hubby its a tough situation for all involved. i hope you get some luck with the new specialist useless comes to my mmind. even they dont know what to do half of the time. how old are your children? do they help out much? i will be busy all today but i will speak to you real soon

wishing u well today

joey
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby weegranny » Thu Mar 15, 2012 3:47 pm

hello to all ,i dont know whether to laff or cry on here ,im now not so alone ,i see what you are all about ,its one of the most lonely illnesses that i know ,i dont know anyone else with the fibro so somtimes thats why i feel so isolated from reality . trying to explain how your senses are at an abnormal level is shty there is no way thay can or could understand this .try to tell someone that you taste or smell things that are not even there ,and they will tell you to get a grip .only thing id grip is their neck .p.s i coudnt slap them as it would only hurt my hands more .lol :evil:
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Re: Getting Dr's/specialists to recognise Fibromyalgia

Postby FluppyPuffy » Thu Mar 15, 2012 4:23 pm

mummy2427 wrote:I am doin ok apart from the new pills my GP has put me on don't seem to be working very well and i have to see him in a couple of weeks and im too scared to tell him as he has already said he doesn't know what else he can give me which i know is a lod of bull. I tried gadapentin when i was first taken ill with this awful illness and had to come off it as it made me hallucinate and even my GP calls it the devils drug as its such a horrible drug.


Which new meds have you been put on and how long have you been on them?? Just wondering as some of the things we're prescribed can take a while to get into our systems and take effect, from about a month for the anti~d meds like amitriptyline to 3~4 months for something like pregabalin. If you haven't been on them for very long, it could be that you need to give them a bit longer to see what happens.

Don't feel scared about telling your GP that your meds don't seem to be working for you. If you don't say anything, they won't know what is happening to make changes for you to try and find something that helps.
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