Not a happy bunny

Got copied in on the letter from the hospital consultant to my GP. This is the guy that promised he could cure my FMS. His version of a cure is CBT and pain rehab. WTF!!! My degree is in psychology & social sciences and CBT is retraining the brain to handle a given situation differently. This is not in my brain!! If FmS was in my head I would have cured myself ages ago.

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  • Oh Suzy I am so sorry I remember your excitement in your blog light at the end of the tunnel and I remember thinking at the time if this person can cure fibro he would be a billionaire by now and not working for the NHS.... I have had fibro 23 years and have tried so many meds private physios and osteopaths and nothing helps really except finding meds that suit.... Try not to let it get you down .. Maybe you won't get your old life back totally but you can have a Good different life. I met my OH when I had fibro and 20 years later we are still together and have had a child together ... Yes it's not the life I had planned but I love it.

    Hugs VG x

  • Hi Suzy,

    Please don't be upset by being offered CBT. I had this and it helped me immensely.

    I think you've got hold of the wrong end of the stick - being referred for CBT does not mean that fibro is in your head!

    What it did for me was teach me how to manage my condition, how not to give myself a hard time, how not to be upset by other people's thoughtlessness, and how to relax and enjoy what pain-free time I managed with good medication. It also helped me to come to terms with worries and anxieties I'd had since childhood, and as my therapist said, I felt as tho' I had put down a sack of stones which I had been carrying for years.

    It was quite hard work, and there was no evidence of my brain being retrained!

    I do urge you to give it a try. Don't feel that you're being patronised, either. I also have a degree, and I know several doctors who have benefited by a course of CBT, tho' as you would expect they were the most sceptical of all!

    I haven't had a pain management course, but I have heard that they are good for helping you to get your medication sorted, and that is vitally important, so that's worth a try.

    At the moment there is no cure for fibro, but there is absolutely no doubt that sufferers who manage their condition aggressively have a much better quality of life.

    Like VG, I have had this illness for many years and it's difficult to fight it - you really do have to train yourself to master the 'beastie'.

    Don't be uset and disappointed - look on this as an opportunity to learn more, and also to add your knowledge to the skills base which we all draw upon.

    Very best wishes ... Moffy x

  • I have had fibro for 14 years. I used to live in Bristol and I was referred by a rheumatologist for a nerve conduction test of my legs. I attended the appointment only to be told that the rheumatologist had written a letter to the specialist stating that my condition was all in my head !!!! How utterly demoralising that was for me. They don't know the pain we are going through every day (I have never had a pain free day). I was eventually diagnosed with fibro last year after moving to Nottingham. I cried for a whole day after the diagnosis. I was so relieved that finally I had a diagnosis and that it was a recognised condition and not "all in my head". I also cried because I now knew I would have to deal with this horrible condition for the rest of my life.

  • As Moffy said, CBT and pain management techniques can be extremely helpful. But there is no cure for Fibro. The best prognosis is for it to be so well managed that it doesn't impact on your quality of life, or for it to go into remission. But management strategies on their own are unlikely to be sufficient if you have moderate or severe Fibro.

  • Thank you all. I think it's just because I'm pretty low at the moment as well. I'm now in my 3rd week of having back pain & sciatica so badly that anything other than laying on my bed is painful. I had so acupuncture this morning so hope that helps some. On top of that my hubbie is away with work and we've been rowing lots anyway. Well I say rowing we haven't been rowing as such just not communicating. I've explained to him that I feel so rough I don't know how much longer I can carry on in my current job and he just ignores it and basically says tough. We don't need the money from my wages to survive he has a great job that pays well but he refuses to let me give up a job that causes stress & involves a long commute. He says its really annoying him that I never go out yet he still goes out & when I've tried to explain to him how much pain it causes me to walk he just gets stroppy and goes out. I'm looking at getting a wheelchair so that at least I can get out of the house with friends as walking more than 200 yards is agony and exhausting. Maybe he needs the CBT.

  • Hello Suzy, I understand all you say, I am sure we all do.

    Have you considered perhaps trying to gently educate your hubby into the 'whys and wherefores' of having Fibromyalgia? Sometimes when we have the condition ourselves, we tend to forget that it's actually pretty darn hard for our loved ones to come to terms with too. They don't understand how we can look ok, seem ok, and then become a completely different person when our Fibro is really bad. It's all a mystery to them. They actually need a certain degree of help, support and understanding too.

    If you click on the link below, it will take you to our main site at FibroAction* where virtually everything about Fibro is explained. It might be worth showing hubby this info, it might help him to understand the nature of this illness and the problems, symptoms etc faced.

    The reason I am saying this is because for the first year I had Fibro, my hubby didn't understand at all, we seemed at constant loggerheads over it all, the change in me, how I went from being a cyclone to someone who frankly couldn't cope with anything by comparison. I managed to sit him down and have a chat and "teach" him about it all, explain and show him all about it. Of course I had to learn about it myself first. It worked a treat for me, he is an absolute gem about it now, he even spots a flare coming on before I do now! It actually brought us closer together too which is wonderful.

    It might help you too, I really hope it does, here's the link* -

    fibroaction.org/Pages/About...

    Please don't be afraid to ask us about this, we are always only too happy to help where we are able to.

    (((hug))) xxx

    Libs

  • Thank you so much. I have sent him links in the past but he seems to prefer to be an ostrich

  • So did my hubby, persevere, catch him on a good day. That's what I did, it worked a treat! He loves you and is worried sick about you and that can lead to hot air situations, he really only wants to help you and make you better, same as my hubby did. Now my hubby understands all about it, he doesn't worry so much, he knows all about it, deals with it and is incredibly supportive. Persevere Suzy, slowly teach him all about it. xxxx

  • Fingers crossed.

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