My doctor has no sympathy for my illness even though the specialist has put the fibro as something I suffer with. I can't get a blue badge even though I am unable to walk very far. Since quitting smoking 5 weeks ago my legs have got better, but the pain in my hands and back has become increasingly worse . I'm desperate for some support but feel like it's hopeless. Nowadays you can't just change your doctor you have to be in the duristiction, and most surgeries are connected to the other. My normal life I had has disappeared and I can't remember the last day I was without pain.

18 Replies

  • Hi

    I'm so sorry to hear that you're suffering.

    I too cannot walk very far and thought of trying to get a blue badge, but after reading some others accounts of the things they ask et I decided not to try. Instead I have to plan where we are going and get dropped off.

    I know it's hard to make some Drs understand or even help, I just get the NHS wont do it as it's not life threatening. It is I think mostly to do with money, as usual. If you cannot change your surgery, can you you try another dr in the surgery? Go on a different day and time and if they offer you the same dr just say you can't make the appointment. Ask for another appt.

    You will find people on the site are very helpful and supportive. We try to research things and post helpful hints. We listen if you want a moan or we post pictures to lift your mood or jokes and funny pis to make you smile through the pain.

    Please don't give up and keep on going.

    I've been told that there's a lot of research going on and one day soon hopefully we will get a cure.

    Take care and keep posting.

    Good luck. 😊

  • Awe that is positive . Thankyou so much for your reply. I am determined now to raise awareness of the difficulties we are facing to gain the support that's needed for this crippling illness.. my doctor said my pain was all in my head.. so I ask myself does that make me crazy.. I think not other wise he would have sectioned me. I will definitely try another doctor within the surgery thankyou.

  • I should think so, how could he say that when so many of us all over the world are suffering?

    I cannot understand how we can all suffer the same symptoms and be suffering for years, then find out we're not alone and others to suffer. It doesn't make sense, do we all get a world wide club together and make it up?


    I have found it to be an illness that can effect anyone, tall, small, slim, overweight, any colour etc. One thing we do have in common usually is we have had serious Heath issues or trauma and we've led a very active life and want to continue to do so.

    It harps back to some not believing in MS and ME, some Drs are just plain ignorant and need to be re educated!

    I'm so sorry to rant, but we live in agony and want our lives back, why do some people not understand this?

    Although saying this, I've researched it and found a lot of soldiers, nurses, police peopl, firemen etc get it. I've actually been told by nurses treating me that they know a lot of nurses who have it.

    I am glad some professionals take it seriously enough to help us and there's lot of research around the world into it.

    Fingers crossed someone makes a break through soon.

    Change your quack, because that's what he is.

    Good luck and I look forward to hearing how you get on.

    Take care and best wishes.👍😊

  • I agree with you. Although my Doc's have diagnosed me, I get angry at all the stress people suffer because doctors are not listening to us. I've stopped going to my Doc's with any new symptom because all they say is "well your already on a lot of meds" no point. I self medicate and gain support from yourselves and other sufferers. There are millions of us out there. People need to get their heads out of their a**** and help us. WHO THE HELL WOULD MAKE THIS UP AND CHOOSE TO LIVE LIKE THIS xx

  • I feel all your frustrations.. I'm the same I don't go to my docs any more as they are just not listening. I'm feeling like I need to do something to make doctors and others listen. I am going back to uni on Monday after a stroke he wouldn't write me off the sick so I've had to go back to the doctor who operated on me to get a letter saying I'm ok to go back. I'm sick of it. I have to fight for everything. As if we don't have enough stuff do deal with with this crippling illness. Maybe the health psychology path is the way to make them listen ..

    Thankyou so much for your message


  • Welcome as I haven't seen you posts before. Yes it is so difficult when you can't pick the GP you would like to see we are just outside the practice that we attended for 35 years and were with doctors who knew us and whom we trusted. There is a choice of two practices without our area but the one is under special measures so we really have no choice but to attend the one we are signed up with. Fibro seems to be the forgotten illness as far as research and help is concerned. I used to have help from a Pain Mangement Clinic some miles away but since the specialist retired that has ceased and you feel as though you are up the creek without a panel so I can sympathise. I ahve started to pay privately for acupuncture but I can fully understand that many cannot afford that. I had 6 sessions of hydrotherapy which was fantastic but again that was the full NHS quota in this area.

    On the forum we try to help each other so if there is anything in particular we ccan try and help with you to post.x

  • Thankyou so much for you reply. It is so nice to know I am not on my own.

  • Insist that your GP refer you to a Pain Clinic....hopefully there's one in your area. It wasn't until I had advice from A Consultant there, that I began to change my lifestyle and drugs regime, and life became less of a struggle. They also have links to alternative therapies, like Acupuncture, etc, so can bypass the sometimes clueless GPs.

    Hopefully, you will find some relief soon.....stay with this Site, and you will not suffer alone!


    Lin 💐

  • Hi there

    Thank you for your reply.

    I will ask. I think your advice may work. Thank you .


  • Hay Happyandfeelinit99

    We live in a catch 22 situation, a good RheumyCon and poor GP, or the other way round. If there is more than one GP in your practice, you can see who ever you want. The senior GP in my practice has no people skills, either with patients or staff. We all know, even the staff quietly complain behind closed doors.

    I have found two other GPs within the practice, one who has managed me for the last eight years, and one as a backup. Both give you whatever time you want, no clock watching ! It makes me laugh that blood tests/referrals all have to be assigned to the one GP no one wants to see, because he is 'the named practitioner' !

    If no others available, changing practice should not be a problem. The GP's code of conduct would prevent derogatory remarks being put on your records, as you are at libity to request to see them any time, and challenge anything you consider not right or correct.

    We moved to where we live in 2001, and being more than 15miles from our old country practice, had to change, firstly to the only one in town. Our second appointment with our assigned GP, ended when part way through my OH explaining her problem, he stopped her and said "You have had your 8 minutes, time for my next patient" !. The next day, we registered with a practice 8miles away. Seems all GPs at this practice are similar, you have 5 minutes to make your bid, giving them 3minutes to respond.

    Although now with different practices for GP choice, an appointment takes as long as it takes, and no one ever complains about being kept waiting, unless longer than 40minutes. Usually, the reception staff will tell you how long the delay is. Appointments are available each day with the duty GPs, after 11am and after 4pm, phone at 8am or 2pm.

    Unfortunately, treatment is a post code lottery as we all know. My daughter 28miles away, has massive problems with her only near by practice insisting they manage her insulin dependant Diabetis not, as usual, the hospital. Don't just sit back and give in, there is a medical ombudsman you can go to if complaining to,the practice is not successful.

    Hope this gives you some ideas and strength to take your battle forward. Sorry for long post, but you needed help, and examples are often the way forward. Here for you anytime, just PM.

    Hayesider, fighter of the NHS. 🏹. ⛹🏻. 🕴

  • I can sympathise with you. The thing that is hard to swallow is that the GP's get paid a professional wage, but act most of the time like they don't know what they are talking about. It's shocking. It's true that they rush you out the door after 10 mins. Surely through paying our stamp means we are paying for a service we are not getting. Thankyou for your reply. ☺

  • Hi Happyandfeelinit99

    I really am so genuinely sorry to read this and I would do everything that I could to find a different surgery and / or GP if I were you. The service / practice simply does not sound good enough!

    I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you


  • Thankyou Ken that was comforting


  • :)

  • I feel extremely lucky. I go to a country practice and my doctor is wonderful. It really is a postcode lottery.

    As for your doctor saying it's all in your head , I'm having to bite my tongue as that sort of language isn't allowed.

  • Oh I know I'm still shocked at his response. They are supposed to be professionals. Thankyou for your response.


  • Hi so sorry you are in this predicament, is there another GP within your practice as you can request to transfer. I find the pain clinic so helpful , can you ask to be referred, there is usually a waiting list but worth the wait. Unfortunately no one can take our pain away so we have to learn to live with it which is what the pain clinic work on.

    I hope you can get the help you need very soon . Loraine x

  • I will look into being refered to the pain clinic. thankyou for your reply it has been helpful.


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