Please - advice needed

SOOO exhausted and in pain at the moment and with an ATOS assessment looming my depression is having a field day. I have had fibro since I was 17 (diagnosed as fibrositis then), which I thought was just muscle pain that would go away, or more naturally that it was all my head. In 2005 my lovely GP eventually got a proper dx for me and I have been on MST etc..etc...etc.. ad nauseum ever since. Can anyone else relate to or give advice as to how to ride this flare, cos its one of the worst i've had for ages. I wonder whether its a combination of stress (due to ATOS) and the weather......has anyone else been feeling particularly low and pain levels high at the moment ? I have other health probs too, anorexia since 11 and now reaping the rewards of that now with osteoporosis and several spinalcompression fractures. Arrrgghhh just wish it would all go away. Sorry for my ramble, please forgive me. Dottii x

11 Replies

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  • hello dottii x if you look i was screaming myself the other day i definately am in the worst flare ever too and i agree with you in it being maybe the weather and stress as i have alot on at the moment being turned down also for dla and worrying for the future, i dont know how to ride it as im a newby with all this but i know you will get genuine and warm answers as i did from the other peeps on here , i just wanted to say i can only send wishes that you feel a little better soon i too also mucked about and starved myself ( i used to be a fitness instructor and to keep slim used to starve and do amphetamines to keep slim:( now i look back how stupid was i all for image paying for it now bigtime!!!) keep warm and i send you hugs alexandra xxx

  • Thank you sooo much for your kind reply and am so sorry that you've been turned sown on your dla - i am "lucky" in that respect as I had it awarded some time back, but with the ATOS, i am sure they will find me "fit for work" ha ha. I am reassured by the number of replies here that I am not the only one wondering if the weather has had an effect Hmmmm

    Plse plse don't add to your problems by starving and using drugs to keep slim, it all just mucks your system up and the long term effects are devastating. I would not wish osteoporosis along with the fractures, particularly of the spine, to anyone , especially not nice ppl like you - you need all your strength to cope with the fibro - gentle hugs, dottii x

  • Hello Dotti, so sorry you are having a bad time of it at the moment. I think most of us can empathise with how awful a bad flare can be, I know I can. It can feel never ending can't it.

    There are some comments and personal experiences of flare ups on many blogs here. If you click on the link below it will take you to where they are listed. Lindsey (Admin) has written her flare blog at the top which is really worth reading. Hopefully there will be some pointers here on how to tackle your flare and that it will help you. I hope you feel better really soon.

    It might be a good idea to have a word with your GP to update them and tell them how you are at the moment. Your meds might need reappraising or you might be given advice on how to manage your symptoms better during a flare up. Your GP will have your medical records so will be aware of your history, hopefully you could get some support offered for that too. Take care. :)

    fibroaction.healthunlocked....

  • Hi Dotti sorry to hear you are having a bad time at the moment pain is so wearing so no wonder you are depressed. I am in a similar situation but my depression is worse than my pain the doctors seem keener to get me help for depression I am seeing the psychiatrist tomorrow Do hope you feel better soon sue x

  • Hello Dotti, sorry to hear that thinga are not good for you at the momment. Flares are horrid, I try to be positive and pace and rest, but I have M.E. too so most of the time I am so exhausted I sleep a lot. Hope things improve for you. x x

  • Hi Dotti, I've been having more bad days than usual recently too since the weather has become so damp and gloomy but I don't know if there is any clinical evidence that this relates to FMS. However, many of us feel that way.

    There are great deal of blogs on here about the stress that ATOS examinations etc put on us. There are a lot of tips on the main FibroAction website. In particular this statement "The training for ATOS Healthcare Professionals is to emphasise that Fibromyalgia is a real and potentially significantly disabling condition. Where a clinical diagnosis of fibromyalgia has been made, full account will be made of it's disabling effects." Which came from Chris Grayling the Minister for Employment. They key in my own experience is that a 'clinical diagnosis' has been made. If your GP is happy to say you have fibromyalgia, that has been enough for some forum members but if you are able to obtain a clinical diagnosis from a Consultant Specialist from either Rheumatology, Pain Clinic or Neurology for example, you have a more solid case.

    As for flares, my own experience might not suit you because I am single with no children, I just rest until it passes - sofa or bed and not much in between!.

    Whippet Christine

  • Whippet Christine, thank you, you are so kind to give me these pointers, which I willl follow up.

    Just wanted to say like you I am single with no children so I do do the same as you, but I am getting rather down as its going on for so long now. I have two terriers who keep me vaguely sane, but they are so sweet and don't want to go out much when I am like this - its weird how they know, but they seem to think they are on a winner cos they get to snuggle up with me on the bed for most of the day, I am lucky that I can open my front door and they go straight out into fields and are safe, they just dash, do what they need to and then race back in for gravy bones and bed !! muchly Dottii x

  • Dogs do know. When I had my two whippets with me, they would just squeeze onto the sofa with me. I could usually get a lovely neighbour to take them out if they really needed it. Sadly Rowan died and his brother is living with my Dad but I get to see him for a cuddle almost every day x

  • Thank you all so much for your kind advice, I have appraised my GP of how things are at the moment but he is inclined when things get bad like this to just tell me to up my MST and go on from there! I don't do that for very long as I am not really happy being on it anyway, but it helped until for three years up to last year when I had a shoulder replacement - the pain from which was incredible, but the op was a great success and now I don't have that to cope with I would like to see my pain management team again to get on to something else (I also think my body may have become used to the MST and I definately don't want to become totally dependant on it )

    Having more than one condition clouds the picture methinks, but I will take your kind advices and have another word with him (tho I spoke to him on Friday last) and see what he says as I can't go on like this for much longer.

    Thank you also for the things abouat ATOS I will go and take a look. I went into such a tailspin when the form arrived that I couldn't face it and didn't do anything about it until nearly the time it was due back in, then I couldn't get an appt with the CAB to help, but even when I did thelady who "helped me" didn't really take any notice of the notes I had made to explain about fibro etc and I sent it off feeling physically sick, knowing that it hadn't been properly explained.

    I won't carry on whingeing about all this - I am sure there are many many people with worse things to deal with, but I am so so grateful for all your very kind and sympathetic encouragement. muchly Dottii x

  • Hi Dotti, I've posted this before and it applies to you too.

    I was put in the back to work group for ESA and lost my DLA. I joined at this site -

    benefitsandwork.co.uk

    and got my dla back due to the advice here. I can now concentrate on the esa appeal info. it costs £20 to join but is invaluable. the CAB will help. good luck.

    regards, sandra99b

  • Thank you so much Sandra, but I have already joined that site and am a paid up member - they do give good advice, but it all makes my head spin. I had help from the CAB with filling in the form and am still in a right old tizz about the whole thing. As I have mulitple health problems beside the fibro it's hard to explain the whole picture to anyone. But thank you again for your very kind response, muchly Dottii

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