Fibro flare or normal fibro?

Will things get better or is this just a flare? Looking back have had fibro coming on for about 3 years, had an operation and never fully recovered from that. Things have just been progressively getting worse. Got diagnosed last November by a rheumatologist along with diagnosis of osteoarthritis in both knees and right hip. Finding it increasingly difficult to get things done and pains getting worse not better. I am on Celebrex 200mg, 30-40mg amitriptyline, 900mg gapapentin and omeprezole. Take paracetamol sometimes too. The amitriptyline is helping with sleep but when I push myself too far I really suffer. Does it get better or worse? I know everyone is different but wanted a general opinion on what others have been through. Are there any other meds that would help? I know I have had some great advice on here before and going back to GP next week. Many thanks in advance Julie

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  • Hi there Julie,

    You ask a hard question when asking whether it gets better or worse, because I think it effects each person differently. Personally I know I have times when I don't suffer as much and then times when everything seems to hurt horrendously and I'm a complete wreck. If you are asking whether you can be "cured" then I fear my reaction would be to say no, as I have had mine for well over thirty years, not properly diagnosed, but looking back the symptoms were all there. My view is that one has to learn to live with it and try to manage your life around it to the best of your ability. Having arthritis, like many of us here do, just adds another nasty into the equation, I ended up having a shoulder replacement back in 2011 which made a considerable difference to my overall pain levels at the time, so that all has to be taken into consideration both when trying to create a lifestyle that you can life with and also with medication.

    Again medications and how their efficacy relates to a person is also very different, there are quite a few combinations, some of which you are already on, which are seen as good forms of treatment, but what works for one doesn't necessarily work for another. Perhaps you could ask your GP for a referral to a pain management team and see if that helps.

    I'm sure others will come along with good advice too, so I will leave it for them to comment, but I'm sending lots of positive healing vibes your way 😀😀

    Foggy x

  • Good response {{{{{{{{Foggy}}}}}}}}}}

    We're all different.

    NHS choices says its incurable.

    So it's now to see how controllable it is for you. Some suffer like Foggy, others to varying degrees. I've just finished a flare. My longest so far is 2 weeks, short ones can fade into just aches and pains. I'm sure exercises work. It's tempting to think they don't, but the level of pain and stiffness may be much worse without. I wont bombard you with treatments. You'll get plenty of ideas, but GENTLE exercise, just to keep the muscles and joints moving, we're not training for a marathon, so anything like yoga, tai chi.

    Mindfulness gets a good press, and all these work for "normal" folk too.

    We all react differently to medication and with fibro some of the traditional "strong" ones just don't work. It's a matter of finding what works for you.

  • I'm in the same position, had fybro for years after R arthritis and I have osteoarthritis too like you, And to top it all was told lately that. Have osteoporosis, thinning of the bones, 😟. I. am in pain most of the time, I take dihydracodine but even those do not stop the pain so much now and I'm thinking of asking my Dr what else I can take, do you take any pain killers beside paracetamol? Like Foggy says I think you have to learn to live with it as there is no cure as yet, the same as arthritis which we have both to contend with, a double whammy, as said there are lots of medication it's just trial and error which will suit you, I'm sure that you will find it soon , My best wishes. 😃

  • Hi Julie, it might be worth getting your GP to check your vitamin levels, particularly vitamin d and also maybe your magnesium levels. Being magnesium deficient can cause pain very similar to fibro pain so a supplement may help. Hopefully your GP will be happy to discuss things with you fully. Good luck and gentle hugs. Steph

  • Unfortunately it rarely seems to go away entirely but I do think we all learn to live with it as the others have said and you build another kind of life around it.

    medication is so difficult to advise on as what suits one does not suit another. I have tried to different types of antidepressant lately in the hope of getting some sleep and helping the pain and found the side effects too horrendous so have had 5 weeks of hell so I am taking a break ffrom them for the time being.

    I like yourself and many others have osteo as well, as well as other health issues and it is sometimes very difficult to decide what illness is causing what symptom. The one med I would not be without is Pregablin as it has really helped the burning, shooting neurapathic pain but again that does not suit everyone.

    I do think we have to learn to pace ourselves as it is so tempting (and I often give into temptation) on a better day to try and cram everything in and then we suffer for it. I am now trying to put a timer on when I am doing a long task and it reminds me to take a 10 minute recuperation break instead of keep on pushing in order to finish a task in one go.

    Hope you find something that suits you.x

  • I am so genuinely sorry to read that you are suffering and struggling so much. I have to say that Fibro affects everybody differently so it is not easy to answers your question, sorry. I would discuss what else can be afforded to you from your GP as there are many different medications out there. I want to sincerely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hello I do get better times as fibro for me is agrevated by the cold weather. I am worse in the morning. Keep an eye of food and see if anything triggers a response. I am sensitive to food colouring which can put me in agony the next day ie birthday cake and coloured drinks - especially the blue ones I discovered.

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