my doctor is no help at all

i went to my gp today as my pain is getting worse, he is not willing to refer me to the hospital until i have tried every drug available, i told him that taking all the pills i have to take every day just to control the pain and to be able to sleep makes me feel like a zombie, it has been this way for a year now and i am getting worse, i am starting to feel low also as i am house bound some days , my muscles are wasting away and my joints are cracking , this time last year i stopped eating as i lost my appetite and i went down to 7 stone,i am normally 9 stone, i am feeling the same again my weight is starting to fall again, this only happens in the winter, in the summer i put weight back on and feel alot better,i seem to have lost my sensors , i have pins and needles in my hands and feet, cramp in my legs, stabbing pain in my elbows and bottoms of my feet, i feel like frail old lady, at 37 , people tell me all the time how good i look , which is great, but inside im dying, everything i do takes such an effort , i cant work, i cant get benefits, what am i supposed to do? i am not here to moan just to simply point out, how difficult it is to get some to listen, understand and help. yet still with all this going on, i am happy, and feel lucky to be alive and thankful for each day, i always have a smile and know this is not the end of my life, its just the beginning of a new chapter, and now i have had my eyes opened wide, i see what its all about, and its a wonderful life x, keep smiling xxxxx

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  • OH i was then going off but saw this . bless you how awful i was so lucky with my gp i wrote a list of all my symptons took them to her she 99% diagnosed me with fibro and referred me there and then to rheumatoligist who then confirmed she is fantastic i saw her few days ago fro catch up and all that you have said in your write up i have , can you change your gp or see a different one i can see 2/3 gp s if cant get to see mine so perhaps if you got an emergency appointment you would see another one who would refer you . i too was 8 half stone and now 7 or 7 half at most i never am big but i do look particularly thin at moment and some days like today i have 3 x cooked chicken drumsticks that my mum bought me and a cup a soup thats it just got no appetite today. i really do feel for you , the only other thing is can you go and see the practice manager and ask about seeing someone else. I dont know if you can self refer to a specialist but again worth a try .And dont be silly your not moaning your letting it allout its what this site is all about you should read the blog i jus wrote under yours now if thats not a moan or a rant what is lol. i too could not get a job at the min and if i am honest with myself prob never will which is frustrating i am only 46. i am on income support with few pound extra as a sickness top up i have not applied for dla ( well i did quite a while back and was refused) but to be fair i have gotten alot worse since then but they are so thorough now alot of people on here seem to get refused so think i will leave it for now. well you take care of yourself and try not to get too down with this awful fibro thing. Just come on here and let it all out there is always someone to answer you and help i have had alot of advice and comfort on here. take care love and soft hugs Diddle xxxxxx

  • thankyou diddle, it makes me feel better knowing someone understands, xxxxx

  • hi lizanna, it took ages for me to get my diagnosis so i know how u feel love. For years i too was sent from pillar to post, one set of tablets after another. i was made to feel i was lying about my condition, even my friends had doubts my pain wasn t genuine. I lost my job because of fms, was declined for qualifying for dla. It was hard, its hard for us all and reading your blog shows that we can all have a positive look on whatever we are going through. Keep smiling and we will all smile with you, Wishing u love and luck xxxx

  • saddly your story is common xx keep going sending hugs

  • I quite often get the comment about how I look well or even I would get better if I just did some exercise and stopped being lazy. Thankfully I've got accepting parents who always supported me, and this encouraged me to also have a positive outlook on life and to continue fighting no matter. And that's what we all are, fighters. And sometimes I don't think this helps, because to easily qualify for benefits etc. I think we have to look like we've give up and it's not in our personalities.

    I would majorly suggest changing gp, just go and register at a new practice, or see someone different at your current practice. I just changed who I was seeing at my current practice and they are brilliant and I didn't expect which was nice :)

  • Sadly, even if you get referred to the hospital there is very little they can do for someone with FMS with there being no cure. I was referred to a Pain Clinic at a large well known hospital and although the consultant was really nice and explained alot of the illnesses I had had since I was born were most likely due to FMS there was really nothing she could do for me. I was referred for accupuncture but it did nothing for me, infact I can worse pain from it.

    She said there were 3 different medications I could try but 2 of them would cause weight gain and I can well do without that so I decided to just carry on the medication I already take. Hydrotherapy is good, I couldn't do the exercises when I was referred for that about 4 yrs back but just being in the warm water was nice.

    Take care

  • Ist changed gp Ive had to , as in the 3yrs Ive been ill, she s been no help, I was refused dla because she s been treating me with the wrong meds, wouldnt support me claim, I ve seen my new practise and been treated alot better, this illness is hard enough to cope with , without having to fight to get help

  • First thing you need to do is get a empathetic GP, then get him/her to refer you straight away, take a list of all your symptoms. It shouldn't take long. It is getting generally harder to get referred these days, at the practice I'm with, all the GP's have a meeting once a week to discuss who wants to be referred and if they will get referred- CRAP.

    Unfortunately pain relief is a case of suck-it-and see, what suits one will not suit another been there, done that. When they do find one that suits it well be great, but it might not last forever, as your body gets used to the chemicals, the pain can creep back, this could take several years though.

    Complimentary Therapies are always wonderful, again, what suits one... Hydrotherapy is excellent, as the water lifts the body and cushions it whilst you move; if you cant get this locally, swimming is a cheaper alternative albeit not as warm.

    Acupuncture - awesome, I had acupuncture from a British guy who is so good, he taught it when he went to China for a sabbattical. Always go recommended, heard lots of bad press from 'Dr & Herbs'.

    Shiatsu - eeek, did not suit me at all, came out with bruises and more pain every time I went but lots of people swear by it.

    Reiki - loved it so much I studied it, I am now a Reiki Master, just need to train my daughter then she can give me Reiki :)

    Reflexology - wonderful but find the effects last about a week so if you have to pay it becomes costly.

    Relaxation - This is a MUST for everyone, either in a group, a cd, on a mountain top or beside a lake, take time out and relax.

    MOST SERIOUS STUFF - YOU DID NOT MENTION WHY YOU CAN'T CLAIM BENEFITS - GO TO YOUR NEAREST CAB. Apply for DLA, (they will help you with all the forms) Tell it like it is FM bloody hurts, it is debilitating and yes you might look well on the outside but inside you just want to crumple somewhaere soft, warm and nurturing. Fill the form out as if it was the WORST day you have ever had. Photocopy your application for future reference.

    Sorry to have waffled but I hope it helps, you are not on your own x

  • thankyou michelle for your help, i have applied for benefits and was turned down, the CAB did it for me, my doctor said he will not refer me anywhere until we have tried all the drugs, i have been a human guinea pig now for 1 year, its getting harder to get up each day and at night im not tired so i stay up all night, its like having dementia, in my area no one has heard of fybro im going to see if i can refer myself somehow, now even driving the car hurts my knees and feet,some days i cant cook a meal, so on those days i dont eat, unless the kids make me something, they have trouble understanding what is wrong with me, and i dont say much about it as i dont want them to worry, this site and being able to chat to people like you and listen to your advise, has really helped me, thankgod i now have this site x

  • hi lizanna how long have you had FM have you been diagnosed ???? i had a doctor like yours and i changed, My daughter looked on the web and found a doctor at the pain clinic at my closest hospital and also found a new GP who knew about FM since then i have been taking new meds so for theI last 3 years i have seen an improvement .I have had FM now for 12 years I have had to work very hard at knowing what i am capable of doing .I do not work but my local job centre has sent me a letter saying i must attend this meeting or lose some of my benefit money .I will go because i have to .That will stress me out and the pain gets worse .What kind of meds are you on ?????? I do hope you find some relief soon xxxxxxxxxxxxxxxx

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