Have I missed something?

Hi I was diagnosed with Fibromyalgia in November 2011 after having various tests that ruled out a lot of things. I saw the Consultant who explained what it is and then ...nothing. I saw my GP just after that and I am on 40mg Amitryptiline daily. Am I meant to be doing something? I've just got on with stuff, albeit slower than before and with more effort. I see my GP if I need to but not often.

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  • Hello how was you diagnosed, by a Rheumatologist or your G.P ?

    Some Hospitals run courses on Living with Fibromyalgia, and there are things like local support groups, perhaps you could "google" and see if there are any in the area that you live in.

    Soft Hugs

    Sue x x x x

  • snap i was told beginning of april that i had fibro by the rheumy , he didnt even explain it to me, just said i will see you again in 6 months and that was that!! everything i know about it now is because i have been permanently on the internet learning all i could, i dont feel like i have any support from the medical people !!! xx

  • Hilly I think that's a common problem, I am sure we have all felt a bit left out in the cold at some point or another. Presumably you have medication to help with your pain or fatigue etc?! If you are at all worried about anything then please go to your GP and mention your concerns. If your pain isn't managed well or you are exhausted etc., there is help out there but you'd need to go through your GP to be referred for this - pain clinics, CFS clinics etc. Also there may be a support group locally that you could go along to, to meet other people with Fibro, that's a great way to compare notes and learn about how others manage etc. I learnt a lot about Fibro from the internet, reading in books, also about Chronic Fatigue/ME which I also have. I hope this helps a bit, always happy to help and listen! :) :)

  • Hi Deebee! I am in a similar position to you. I saw a Rheumatologist, got my diagnosis and new medications, then only see my GP if I need my prescription altering. I also am able to see my Consultant if I am worried about anything or my situation changes. I assume you have the same arrangement. It isn't necessary to keep going back to the hospital if your Fibro is being managed satisfactorily. Also if your meds are stable and helping you, there isn't really any reason for regular appointments. I take 75mg Amitriptyline and painkillers but that's it for me too. As long as you aren't worried about anything keep going as you are for now and then if you do have concerns or your condition changes in any way by all means get in touch with either the hospital or your GP. You will adjust to life being a bit slower, but you will learn what you can still do as opposed to the things that you find a bit more difficult or not possible to do these days. By all means if you are worried about anything mention it here and hopefully we can advise you what to do. It sounds like you are managing well, so I wouldn't personally be worried. Well done and it's great to have you here with us! :) :)

  • Thanks for the suggestions.

    My GP suspected Fibro and referred me to the Rheumatologist who confirmed it. She was very nice and told me a lot but to be honest my head was just whirling because of the diagnosis. She gave me a leaflet which was really helpful

    I've done a bit of research on the Internet but there seems to be a lot of conflicting things.

    One of the things that has surprised me is how many people say to me that "when I get over it" I will be able to do things normally again.

  • Deebee, I don't know who told you "when you get over it", but that is bound to confuse you. I think it's more of a question of coming to terms with it and finding ways round the condition and how best to cope with it. There is no doubt about it, it does take time from being diagnosed to accepting that you do have Fibromyalgia and then understanding how it affects you personally. It can affect others differently which can make it confusing. It takes time to see the full range of your symptoms and also time to address these things - I know for the first year after I was diagnosed I felt I was in a daze, I refused to accept that my life was going to change, that I might not be able to do the work I had loved for so many years. It's not possible to pinpoint a time when we can accept these things, it tends to just happen, some people take longer to accept it than others. It also helps having family and friends who understand and can help and support you. How you are feeling Deebee is perfectly natural and completely understandable, I am sure the majority of us have felt that way at some time or other. A lot of articles on Fibro tend to generalise, it's not always like they describe, it can differ from person to person, whilst other things they describe you will be able to relate to. Don't take everything you read as cast in stone, it varies. Also some people deal with things better than others. Some need more support than others. I don't tend to look too far ahead, I concentrate on the day in hand, do my best and set myself little targets. Then when I actually achieve something I feel really pleased with myself. We will have good days and not so good days, take it a day at a time and remember a problem shared is a problem halved! We are here for each other and happy to help! :) :)

  • Thanks Libby. My boss and other people (not medical) have said about "when I get over it". I gave my boss the leaflet to read and to be honest she has been fine on the whole.

    From things I have seen on this site, I don't thnk my Fibro is as severe/complicated as others. I can see that there are several variations.

    I get frustrated with myself because I used to work for hours. I can't do it now. I guess I need to stop beating myself up about what I can't do and take each day as it comes as you suggested.

    Thanks for your support Libby x

  • My pleasure Deebee, happy to help and support you any time! :) I suspected it was probably a boss, I had the same experience three years ago! He told me to "get over it!" There are varying degrees of Fibro, some people are affected more than others, also we all tend to experience good days and not so good days and bad days. I too get so frustrated Deebee, I used to work long 12hr+ shifts, on my feet, charging around the whole time, working my socks off, and adapting to being at home all day every day and being very inactive by comparison, is still tough for me to get my head round after a few years of Fibro! I am a bit of a rebel by nature and convince myself I will work again, when I know that I won't be able to race around like I did. I am also too hard on myself and I feel guilty with my family too because I was so active, they used to call me "cyclone". I consciously try to tell myself to take a "chill pill", slow down a bit and stop being so hard on myself and that I'm actually doing well these days in accepting all the changes in my life. Try to focus on all the things you can still do Deebee as opposed to the things you either find difficult or can't do these days, that philosophy helps me no end! Oh yes, and take a day at a time, don't look too far ahead, that works well for me too! Gentle hugs! :) :)

  • hi i am so very lucky to have a wonderfull gp who i see every month and sits and explains everything , she also spoke with my hubby to explain to him as well , bless her shes a star xxx

  • That's brilliant rosehip! Having a GP who is supportive is a great help and her speaking to your hubby is wonderful! That's great to hear! I am lucky too, my GP has been lovely to me, it helps a lot doesn't it. So pleased for you! :) :)

  • There is almost certainly more that you and your GP could be doing. Being proactive is very important.

    Have you been referred to physiotherapy or hydrotherapy? There is FibroAction blog on here with what a physio should really be doing with a Fibro patient.

    If your meds are not giving you good symptom control, talk to your GP about changing them. Research does not support the use of Ami long-term for Fibro or at high doses - it is typical that people find that effectiveness decreases, higher doses are needed and side effects increase as time goes on. One important question to ask yourself is do you wake up refreshed? That's the goal. Ami may be helping you to get to sleep but it may not be helping improve sleep quality or may even be worsening it (multiple vivid dreams are a common side effect).

    Unfortunately, Fibro is often diagnosed by rheumies as they have traditionally dealt with Fibro patients (it was used to be thought to be a form of rheumatism) but as Fibro isn't like any other condition they treat, most rheumies don't have much knowledge of how to treat Fibro. A neuro might have more knowledge, but most don't realize Fibro is their kind of condition.

  • Hi

    I was diagnosed by my GP. She said there was no point referring me to a Rhumatologist as there wasn't much could be done. I was put out and sorry for myself for a bit, but realising the relief I felt when I knew it was something and wasnt going to kill me.

    I just get on with it and try to manage it myself. If you can do that it is probably better for you mentally, as you are in control yourself.

    Best wishes with it all. Everyone seems to be different. x

  • I got diagnosed and discharged in the same sentence!! woop de woop!! oh but i did get a pretty leaflet though!! xx

  • All you poor people, my specialist is not good either

    only seen him once, but my doctor although not very

    up on fibro does look up the various things that he

    hopes works for fibro.and is very understanding

  • Hi everyone. I was diagnosed with Fibro by a Rheumy in 1996, but no one told me!! It was only after a friend saw a magazine article about it, I read it and realised those were my symptoms. So I saw my GP (not the one I've got now, who is brilliant) and asked if the word Fibromyalgia was in my notes from the Rheumy. Yes, it was. Well cheers then, it would have been nice for someone to tell ME!! I've seen no one but my GP(s) since, connected to my Fibro. But I have a really sympathetic and understanding GP now, which Im grateful for. I only see him when I need to. I just get on with things as best I can, but that's just me. I've had to learn what I can/can't do and how to pace myself and to not "over-do" things because I know I'll only pay for it later. You just learn as you go along.

  • I got tonnes of blood tests and xrays. Referrred to rheumy who did more xrays and blood tests almost a year ago now. He told me that he was 90% certain it was fibro. Was referred to physio - My pelvis was out of alignment and have now got an open discharge after 7months. Have not seen anyone but my gp with regards to the fibro. There was mention of going to occupational health and a few others but nothing else has happened

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