Recently diagnosed , eventually !

I was really frustrated as I had pretty much self diagnosed and I saw 4 different doctors before I heard those wonderful words " I believe you have FM" , fantastic I thought , now I will get some help. I know have the occasional ok day and night but still mostly really bad . I am now on the maximum dose of Gabapentin and am also supplementing with naproxen and ibuprofen. It is making very little difference. Severe shooting leg pains and burning , very sensitive pain are my main problems. Trouble is it is inscessant most of the time.

Any advice would be welcome.

11 Replies

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  • Hi Jimbo....I think you will find lots of advice, support and information on here plus lots of friends who are willing to share their experiences of fibro. You will get a proper welcome from one of our wonderful Admin team (who also have fibro plus other health issues!!). Have a look at our Mother site and click on various posts on the right of your screen. It will take a while to find the meds that suit you as we all react differently....Wishing you a slightly belated Happy New Year and hope you find relief very soon....Gentle hug x

  • Gabapentin doesn't work for everyone. For me it made all my symptoms worse & it took me a year to recover from the side effects.

    With Fibromyalgia it's a case of trial & error. What works for one person won't work for another and even if it worked for you before doesn't mean it always will.

    Sometimes my pain meds don't work at all & other times they will. It's just something you learn to deal with when it comes to fibromyalgia. I've had it 10 years & I am still learning!

  • I am sorry you are suffering so and not finding much relief. I was wondering if you have tried any stretching, diet changes/juicing , minerals &/or vitamins, exercises?

    I do not take medications, but have found relief from natural remedies.

  • Hi , thanks for your reply. I'd be interested to know more detail of what you are doing and what the affect has been for you.

  • Well, I have found relief from different things.

    The most important things to me right now, is juicing at least once a day, stretching and foam rolling my body through out the day, trying to walk or exercise some every day throughout the day or every other day, resting when I feel I need to,while not resting too much. Getting in the sun as much as possible, having a bed time and a set time to wake up, I try to stay away from sugary foods and eat mostly whole foods. I am currently trying to cut back on coffee, so I have started drinking a lovely green tea with blueberry bits with raw honey and lemon.

    I try to focus on positive things and keeping my mood up.

    I recently started Apple cider vinegar drink in the morning.

    I'm trying to think of there is anything else I am currently doing. :)

    I rub magnesium chloride oil at night, it loosens my muscles and helps me fall asleep

  • The juicing benefits me on a global level. I sleep better, I have more energy, my body feels better, my muscles loosen which makes stretching/foam rolling and exercising easier and more effective.

    My issues are very muscle related.

    Massage/foam rolling is very good for the muscles, it helps them loosen and brings oxygen to the muscles and some websites say it helps muscles release toxins. Magnesium chloride oil relaxes the muscles I also feel it helps me fall asleep a little easier but it might just be the relaxed muscles.

    Range of motion exercises and injury prevention exercises are really great. It keeps things moving and strengthens the right muscles to prevent further injury and pains.

    Finding and practicing proper posture: standing, sitting, walking, sleeping, etc. It helps my body balance itself.

    I go to the chiropractor monthly as well.

    My pains increase when I indulge my sweet tooth, so though it is hard, I try to watch my diet closely and eat whole foods, mostly fruits and veggies.

    I'm not sure if I covered them all.

    Anyways I hope some of that helped.

  • I found acupuncture helpful, so you may want to ask about that.

  • Lol

  • Hi Jimbo9046

    Welcome to the forum 😊

    Take a look at our website. It is full of useful information about Fibromyalgia fmauk.org

    It can take an agonisingly long time to get diagnosed with Fibromyalgia. It can take years, for some of our members decades.

    People seem to think that once they've been diagnosed almost that their troubles are over. Sadly it is just the start of the Fibro journey.

    I have suffered with Fibro and ME for 36 years and am on a cocktail of different meds and I can honestly not remember a time when I wasn't in severe pain. It is unrelenting.

    Everyone suffers with Fibro to vary different degrees. Some have mild Fibro where they are able to continue a normal life, to the other end of the scale where people like me struggle to get through every day.

    It may be that it would be an idea for you to change from Gabapentin to its sister drug Pregablin?

    You can also ask your GP to refer you to a Pain Management Clinic to help you deal with your pain.

    You can also be referred for physio and CBT Cognitive Behaviour Therapy which is a talking Therapy.

    I think it is quite sad that in 2017 we are still coming across doctors and consultants who don't believe in Fibromyalgia.

    I wish I had better news for you, but I don't want to lie to you.

    Wishing you less pain and more peace

    Lu x

    Administrator

  • Hi Jimbo9046 welcome to our wonderful forum ☺ I'm sure you will come to find the forum invaluable in chatting to others who are going through the same experience as you, talking to others at different stages of their lives with Fibro and learning from their experiences.

    It does help with the whole process and I wish I had found the site years ago. I have had Fibro for nearly 30 yrs and I'm still learning about it, like we all are. I see you already have some great advise from Lu that I can't add to, just saying hi & I look forward to chatting to you on the forum.

    Peace, luv n light

    Jan ☺

  • Hi Jimbo9046

    I sincerely hope that you are feeling as well as you possibly can be today? Welcome to the forum and it is wonderful to make your acquaintance. I am so genuinely sorry to read of how you are suffering and struggling, and I sincerely hope that you can find some resolution to these issues.

    It may be worth discussing additional medication with your doctor to ascertain if there is anything that is suitable for you? I am aware that many members also take Amitriptyline alongside Gabapentin. I want to sincerely wish you all the best of luck, and please take care of yourself.

    All my hopes and dreams for you

    Ken

    PS. I also forgot to add that both Naproxen and Ibuprofen are classed as NSAID's and should not be taken at the same time my friend. Please take care.

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