Frustrated

MollyMai
MollyMai Member Posts: 2
edited 30. Jun 2014, 05:52 in Living with Arthritis archive
I have suffered with my symptoms for around 7 years now. I have been to my doctor many many times with this and have had multiple tests - all coming back negative/normal apart from my inflammation markers. Today I finally got to see a rheumatologist (I know - seven years right) The rheumatologist examined me and told me that I do indeed have the tender points and the symptoms or fibromyalgia and that I should talk to my GP about the types of medication I can go on. However, she said she will not give me a diagnosis on paper as I am very overweight and she feels my fibromyalgia will go away if I lose the weight :roll: *sighs*

Admittedly, I have gained a lot of weight since dealing with my symptoms and try my very best to get as much exercise as I can manage but I struggle, even with normal everyday things. If I cant get a diagnosis then I cant get any help or support to deal with this. I really don't know where to turn to next.

Any advice would be so greatly appreciated.

Comments

  • brandy192
    brandy192 Member Posts: 73
    edited 30. Nov -1, 00:00
    Hi Dont really have any advice as such but would like to offer you support as I have the same problem of being overweight. I have confirmed severe OA in both knees and other stuff like high BP and type 2 diabetes which I know are classic things associated with weight. Its a struggle to lose the weight when you feel pain every time you move I am at the moment seeing a Physio who is advising me on how to be as mobile as possible and is also encouraging me to lose weight I find him a lot more useful than my GP because he has more time to listen. So I would ask to be referred to Physio when you see your GP.
  • stickywicket
    stickywicket Member Posts: 26,271
    edited 30. Nov -1, 00:00
    Hello mollymai and welcome from me too. Some good advice there from Brandy,

    So, after seven years of symptoms you finally got referred to a rheumatologist who thinks you probably have fibro but isn't sufficiently sure to make a firm diagnosis? I'm afraid the arthritic world is full of such delays and uncertainties. It can, indeed, be very frustrating but probably that's better than a quick, wrong diagnosis and incorrect treatment.

    I don't have fibro just RA (and OA) and I am lucky as my diagnosis was clear-cut from the start but many on here can get stuck in a no-man's-land of Maybe/Maybe Not.

    Whatever the final outcome, exercise and a healthy diet will improve things for you. I doubt I'd still be walking if I didn't do my daily exercises. As for food, I just don't buy things like sweets, chocolate, crisps and biscuits except for special occasions. I find what I don't have I can't eat :) Arthritis Care has some info on diet and exercise which you might find useful. http://www.arthritiscare.org.uk/PublicationsandResources/Selfmanagement/Healthylifestyle

    Don't worry about not getting help and support without the firm diagnosis. We will be here :)
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    On reading your account I am shocked that your GP didn't refer you much earlier to a rheumatologist because, to my mind, the raised inflammatory markers indicate some form of inflammatory arthritis rather than fibro. (I had a similar type of GP when I began my troubles back in 1997.) I have an auto-immune inflammatory arthritis (psoriatic, PsA) which in turn has led to OA and now fibro but that feels very different to me compared to the other pains. I went five years without treatment, then lost another year being bounced between orthopaedics and rheumatology; it was 2002 before I began my first med by which time it was too little, too late.

    I tend to regard my fibro as a muscle pain, it's certainly different in nature to the OA and PsA pain. Common to all three is on-going fatigue (I'm going back to bed in a moment, doing some ironing has wiped me out) and that is often the most frustrating aspect of the whole malarkey. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • elnafinn
    elnafinn Member Posts: 8,043
    edited 30. Nov -1, 00:00
    It sees to me, MollyMai that this rheumatologist thinks that what she said will spur you on to lose weight. She should not have been so dismissive and should have given you some pointers as to where/what you could do.

    Seeing a physio may well be a good idea as you can discuss it all there and hopefully be given some contacts/phone numbers of where exercising is going on that may well help you. Being with others in the same/similar boat does help rather than trying to take it on alone. In some areas GP's can refer you to a gym where groups of people similar to yourself are helped.

    I hope you get something worked out soon.

    Elna
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • barbara12
    barbara12 Member Posts: 21,104
    edited 30. Nov -1, 00:00
    Hello MollyMai
    And welcome to the forum
    Sorry you are having an hard time,there are many on here that have had to wait many years due to there GPs not taking Arthritis seriously.
    It is hard to keep your weight down when you are not has mobile, you could ask to be referred to a gym and they will give you one to one, but I would keep on at them to get a proper diagnosis.
    Love
    Barbara
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi Mollymai, Firstly welcome to Arthritis Care Forum, I suffered with being over weight when everything started to go downhill with my pain. I did as much as I could exercise wise. To be honest I enjoyed Tia Chi the most it was movement easy and enjoyable. I also went to weight watchers and as a package it did help me loss weight. It's all about finding something that suits you so you enjoy it and it's not just a slog. Did it help my Arthritis? It helped my joints yes because they didn't have such heavy weight to carry round. The consultant I saw put it bluntly about my weight pretty much said your fat and need to loss weight! But that in away spurred me on! I hope the advice helps you make a decision on what to do next and remember we are all here in the same boat to help and advise each other.