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Any good news stories

dev9bov9dev9bov9 Posts: 4
edited 12. Oct 2019, 15:31 in Say hello
Hi been diagnosed RA and fybromyalgia,im56 had symptoms for 10years,had to put on hold my work ,as photography such I love!!,as my conditions have robbed me of my life ,everyday a battle to try to give into being bed ridden, pain ,depression low grade fever felling unwell everyday 😐my bed is HQ,I'm on meth 2 months on 10mg week,first 2weeks of hell ,sickness diareah,I think the treatment turns up fibro myalgia by couple of notches,,as does any pain killer except naproxen,any mentle health meds ,I know this because when I stop them myalgia calms down ,doesn't to away,any good news story regarding meth would b comforting ,I find tramadol helps with mentle state ,doesn't kill pain,I'm having to break the the law by using cannabis bought off street ,which helps me relax,sleep ,eat ,😕thank you

Comments

  • moderatormoderator Posts: 4,095 mod
    edited 30. Nov -1, 00:00
    Hello and welcome dev9bov9 to Versus Arthritis Community Forum

    Sorry to read of your problems with RA and Fybro, we have many forum users with the same illness, that said, there are many of our forum users who will be in a position to offer help, support and advice.

    I have found these links which may be of help to you:
    https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/
    also
    https://www.versusarthritis.org/about-arthritis/conditions/fibromyalgia/

    Please feel free to phone the Versus Arthritis Helpline for more support, the telephone number is at the head of the page.

    Enjoy the forum

    John
  • dreamdaisydreamdaisy Posts: 31,556 ✭✭✭
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you and I am sorry you have had to find us. I have psoriatic and osteoarthritis plus fibromyalgia and have been dealing with the malarkey for over twenty years: I began aged 37 and am now 60.

    I am not sure what you mean by success stories: if you are asking whether there are people out there who are doing so well on the meds that they are living a slightly altered normal life then I presume there are, but we never hear from them because they don't need a forum, rightly assuming that their version of arthritis is the same as others'.

    If you want to know whether some people have their disease activity under control by the meds then yes, there are (me for one) but my life is not what it could be. There again it rarely has been so no great change there, I was born with auto-immune nonsense so it's just more of the same. I inject methotrexate and humira for the psoriatic arthritis, take pain dullers for the osteo and rest to deal with the fibro (which doesn't kick off often so I am fortunate on that front). I plunged into depression when my OA was diagnosed in 2011 so to this day take a small daily dose of an anti-depressant because if I am stronger mentally and I can cope better physically.

    Over the years I have tried many meds, none have been truly effective but I soon learned to manage my expectations. I was used to taking meds that made a positive difference I could feel, allowing me to live life a little more fully, so to find there were many that didn't - or rather worked in a different way - necessitated learning new lessons. I have had side=effects but they have either lessened or I have stopped the medication to try another one.

    I must go now, we have friends coming to dinner so I am doing a little, resting a little, to ensure I last beyond 9pm. No matter if I don't, they can fend for themselves as they have seen me wilt before and know what's what. It's the seeing them that matters, in a controlled and not too uncomfortable environment. It is what it is, it will do what it will do but I am more than my disease, I always have been and always will be. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • wazz42wazz42 Posts: 80
    edited 30. Nov -1, 00:00
    Hi,

    There are lots of success stories, we do need powerful meds, and boy do they have side effects and our consultants use experience, trial and error to find the combination that will work just right for each patient.

    The majority of patients manage very well with few adjustments.
    Some carry on as though they aren’t ill.
    Some struggle with symptoms even though they are good from the point of view of disease activity others struggle with their condition not being well controlled and symptoms being bad too.

    It’s important to work with your health team, reporting how it’s going and take on board it may be a combination of meds to get your disease under control.

    Keeping positive is the trick, let us know what works for you and ask if you need support.

    Keep enjoying the photography - how lovely to turn a passion into a job! What type of photos do you like best? Maybe still life just now :?

    Xx
  • dev9bov9dev9bov9 Posts: 4
    edited 30. Nov -1, 00:00
    wazz42 wrote:
    Hi,

    There are lots of success stories, we do need powerful meds, and boy do they have side effects and our consultants use experience, trial and error to find the combination that will work just right for each patient.

    The majority of patients manage very well with few adjustments.
    Some carry on as though they aren’t ill.
    Some struggle with symptoms even though they are good from the point of view of disease activity others struggle with their condition not being well controlled and symptoms being bad too.

    It’s important to work with your health team, reporting how it’s going and take on board it may be a combination of meds to get your disease under control.

    Keeping positive is the trick, let us know what works for you and ask if you need support.

    Keep enjoying the photography - how lovely to turn a passion into a job! What type of photos do you like best? Maybe still life just now :?

    Xx thank u for your lovely reply helped me a lot ,landscape photography, but alas I can't walk at mo, the meth ramps up fibro symptoms,although I feel it knocking back RA alittle,these must be side effects which worry me as I can't take mentle health meds for same reason ,I doesn't get better with time ,I am an optimist like you ,and want to give positive advice and when life gives u lemons make lemonade ,thanks xx
  • stickywicketstickywicket Posts: 25,871
    edited 30. Nov -1, 00:00
    Hi. I'm a methotrexate success story. I was diagnosed at 15 when no modern DMARDS, such as meth, were available and, as a result, soon had OA as well as RA. Since finally getting on meth my life changed dramatically. Admittedly, I already had new knees and, I think, one new hip by then but it really has made a big difference to my life.

    Of course the OA rumbles on...and on :wink: as it does but my RA is now under good control.

    Do try to avoid lack of exercise. Exercise is so important for keeping our muscles strong and supportive. I've always been taught to do strengthening ones only when feeling reasonable but to do the range of movement even when flaring. They are essential as far as I'm concerned.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • wazz42wazz42 Posts: 80
    edited 30. Nov -1, 00:00
    Hi,

    Landscapes are lovely, I went on a photography course as I live in a beautiful part of Wales and have learnt the basics of taking photos, I admire you for putting the masses of work to get the just right picture.

    As with lots of meds once your body gets used to them you can tolerate them much better, this can take weeks I’m afraid. I think of it being sea sick. I go over the Channel and feel proper sick but if I were stuck on a boat/ship I know eventually I would get used to the feel of the sea and be ok. Your health team will be making sure the meds are ok via your blood tests.

    Why not pop into Living with Arthritis or the other topic areas and post xx
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