How to manage

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I have tried everything to avoid medication, didn’t excellent, supplements coming out of my ears. How do people manage this, I know no cure but is there any reprieve with anything? Thanks 

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  • Posted

    Should say diet excellent. 
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  • Posted

    I've 'personally' found a combination of the following works for me;

    Codeine

    Magnesium

    Morphine

    Paracetamol

    Pregabalin

    Oh and FINALLY, like I said, it WORKs for me but it might not work for you!

    FINALLY

    Leaving Work and going on BENEFITS.

    Best of luck for whatever might help for you, and anybody else who reads this post/reply.

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    • Posted

      Hi Louise,

      My career has started as a Degree qualified Electronics and Telecommunications Engineer, but unfortunately my Fibromyalgia and Fibro-Fog has affected me, my memory, and my technical memory that I now find difficulty in even such basics as Microwaving a Micro-Meal, Changing a Light Bulb, even remembering how to work my TV and TV Recorder thing.

      Like I said IT ONLY WORKS FOR ME but I appreciate it's not for everybody.

      P.S. I wasn't shouting above with capitalisation, just gets to me why my career is over. During the last 8 years I've gone down hill but my employer DID EVERYTHING they could but eventually enough was enough.

      Best of luck to you all....

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    • Posted

      Thankfully my job is not physical, I do accounts and payroll, I don’t have fibro fog thank goodness and can still produce a set of accounts ok.  Mine is just pain in lower back and right shoulder,fatigue and the anxious/nervous feel I can’t cope with. Rest of me seems ok, I can walk 10k steps everyday although through a pained body! Sorry for your career that’s tough! 
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  • Posted

    Well Cudos for trying a more holistic approach Louise. I have found that our pain gets worse in times of severe stress and worry, and weather conditions involving barometric change. So Reflexology and gentle massage helps with my pain. A Magnesium supplement such as organic Cacoa added to a smoothie has also made a difference. I try not to take tablet supplements but mostly food type or powdered ones. It is an ongoing battle sweetie, but you are certainly not alone in the struggle. And You will have better days. Never despair. Maggie x
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    • Posted

      I am trying the rcp which is all

      About magnesium and minerals. Early days and I do seem

      Much more relaxed but feel worse think I am not used to relaxing, have to give everything I have to get through the day! It’s all a vicious cycle. 

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    • Posted

      You sound like you have been perhaps quite demanding on yourself Louise. Many of us sufferers I think, were a bit perfectionists. Thinking we had to do it all and not recognising our personal limitations. Perhaps there were high expectations from other people in our lives as well. Well meaning people, but the expectations were likely way too high. Low self worth can also cause us to be People Pleasers and we wear ourselves out trying to attain approval in some way. I have had to reevaluate myself over the years and do some real soul searching. I think we often lose touch with ourselves and our own merit. I really believe we need to value ourselves before we can truly value others. I am certain you are a fantastic person Louise. It’s time for you to take better care of your needs and health and to learn to be more gentle and kind to yourself. One day at a time sweetie. X
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  • Posted

    You will have up times and down times,  when you are feeling rough just remember it wont last 

    i find i can reduce meds pregablin and amitriptylene when feeling better

    magnesium oil spray is good at night

    i swim once a week and it has never made me feel worse only better 

    and i try to walk every day, even if its painful as it lifts my mood

    give yourself a break and time to pick up if you feel ill, you may  need to cancel things!

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  • Posted

    Hi Louise,

    I have been exactly the same as you, however I started to learn to embrace this illness because you change.

    You will learn to pace yourself and you’ll know when you need to rest. You’ve  just got to listen to your body.. why not try chair yoga I found that also helpful. I personally don’t plan a head because I don’t know how I’m going to be.. however Im grateful because ive learned a lot from this illness and now realise that I have burnt myself out.

    Hope this helps.

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  • Posted

    I take lots of supplements-double the dosage, I take magnesium in a glass of water every morning also mag supplements. Vitamin d, glucosamine-stopped them and realised they were actually working, Osteo  Panadol 2 x 3 times  a day..the only prescribed med I take and I’ve been taking it over 20 years and never had it increased is called Endep, it depends who makes it and where you live as to what it’scalled. The ingredient is  Amithriplyne

    ...Amithriptilyne is  the only med I take for Fibro...gives me a great pain free sleep..- no pain..still feel a tad drowsy waking up...but that sleep is what makes this Fibro manageable for me..only get flare ups now..once  it was just constant  pain almost everywhere and sleepless nights..I take it 7pm before bed..it really does work wonders ( for me..that is,) we are all very different..I take 25 mg...never had it increased either ...started on 50mg but I was like a zombie...all the next day..dropped to 10mg for a while-still not too good but 25 mg is perfect for me..it is actually an antidepressant that works excellent for pain..it numbs the nerve ends and stops the pain from jumping on to the next nerve..hence a very painful body...the antidepressant is probably a lil bonus as most of get depressed from time to time..yes it does knock me out to give me that great sleep which is just sooo needed, to be able to deal with the pain etc the next day..but once I'm up and dressed..I'm fine.....Its great...22 years down the track..have to be woken up in the morning..but once up and about I'm just fine.....it's like a miracle med for me... it takes a while to settle in. ..also, please remember that less stress is the key to Fibro....be blessed..have a lovely day..:-) xxx🐻🐻

     

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    • Posted

      Hi thank you, I have just started the root cause protocol which is all about magnesium. It takes the symptoms away for a while, it’s onky been a week so I am hopeful it will build up. My diet is clean and to be honest all my pain seems to only be the right side, it’s very strange, maybe just because I use that side for everything you feel it more! I will look into amitriptoline, I am trying my hardest to do this naturally but like you say I think sleep is the key. Thank you for your message it has really given me hope x
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    • Posted

      SNAP ! I am just having a good wine and a whine on here as it is my 22nd anniversary of having Fibro this month. I gave up looking for cures years ago, but decided I would check on here today to see if a miracle cure has been found. I can't quite believe it has been 22 years of pain. I have been on an antidepressant for years too....I guess it has worked for me as well.

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    • Posted

      Oh dear! Such a long time to be feeling c**p! Which antidepressant are you on? I was on Fluoxetine for years, now they are trying me on Escitalopram, which does seem to be helping a bit.
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    • Posted

      I take Fluoxetine as a painkiller and this works for me.  If I forget to take it (80mg daily), within 24 hours the electrical pulses through my head take a hold and ruin my day.  I also take vitamin d, which controls the pins and needles.  A friend has suggested I try magnesium too, which I will when I've done a little more research.

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