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Saturday, May 24, 2014

The do's and don'ts of living with Fibromyalgia


One morning in 2003 I woke up in so much pain that breathing was difficult and turning my head impossible.  The doctor diagnosed me with Fibromyalgia...gave me anti inflamatory and pain injections...and sent me home with a prescription for Trepilene and Azor.  At the time he told me that there is no known cause and no known cure.  It was something to live with.  Lekker ne!!

For many years I just "lived with it".  Using the whole mind over matter method.  If I didn't mind it didn't matter.  I got up each day, ignored the constant aches and chronic head aches and just continued with my life as usual.  I believe I have a high pain threshold.  Ever so often there would be a major flare up and I would experience "flu like" symptoms.  My muscles spasms would then be so bad that the inflamation would make me feverish and I would have to go for injections and stay in bed for a few days.  Those were the days when I wanted to just curl up and die. It is a chronic pain syndrome that eats away at your joy and steals days out of your life.

I tried everything.  Food supplements, special diets.  I visited chat rooms for fibromyalgia sufferers.  You name it...I did it.  Then three years ago I was just plain fed up.  I have had enough of constant pain and I wanted it resolved...NOW!  So I made an appointment with a Rheumatologist and had to wait for nearly six months to get an appointment. (Seemed that my NOW wasn't going to happen and that I am in the wrong business :-)

She first put me on Lyrica (an anti seizure medication with pain blocking properties)and I had awful side affects, so three months later she had me try Cymbalta (an anti depressant with pain blocking properties).  After 5 months on Cymbalta I could still feel no improvement in my pain levels.  So I stopped.  Cold turkey!  The withdrawal symptoms were awful , I was argumentative and not easy to live with.  That my husband didn't divorce me is simply a miracle.  It was fibromyalgia 2:  Lynette 0.

My next move was to see a neurologist.  I insisted that there must be something wrong with the discs in my neck as it felt as if most of my pain and head aches were radiating from my neck.  A MRI and electromyogram later the Neuro sat me down and told me that "it is what it is".   Making peace with it is what I need to do and he needs to find me the pain blocker that would work best for me.  He then prescribed a schedule 5 pain medication (Tramacet) that I needed to take every night with the Trepiline and Azor, as it would also act as a pain blocker.  It worked.  Six months later I was relatively pain free.

I want to share with you what I learned during my journey.  What worked and what didn't.
  1.  DO see a specialist i.e.  a rheumatologist or neurologist as soon as you can after being diagnosed.  There is a pain blocker out there...they just need to find the one that works for you.
  2. DO NOT...I repeat...DO NOT...go into chat rooms or forums with other fibromyalgia sufferers.  If the pain doesn't make you depressed, the chat rooms sure will.
  3. DO NOT spend a fortune on supplements.  They don't work.  The only supplement that I found helpful was Magnesium.  It helped with muscles repair and when taken before bed time, will help you sleep. A vitamin B and B12 injection will help with the energy levels.
  4. DO get serious about quality sleep.  The pain tends to affect your sleep patterns.  The medication (like Trepiline, Azor and Tramacet) will help you fall asleep.  If you are a light sleeper get some wax earplugs and cut them to a size that feels comfortable in your ears.  That way your partner's snoring or other noises will not disturb your sleep.
  5. DO NOT stop exercising. If you aren't exercising... start slow. I have found immense benefits from a brisk walk each morning.  It cancels out the lethargy brought on by the medication and the endorphins makes you feel good and acts as a pain reliever.  You will also strengthen your muscles and the spasms would be less painful.
  6. DO laugh more and have fun.  I met a woman a while back that have gone into mourning about her health...that just makes me depressed hearing it.  DON'T stop living. 
  7. DO NOT use fibromyalgia as a way of getting out of activities.  That makes you a victim.  Rather do as much as you can when you feel good.  You often underestimate your capability.
  8. DO NOT stop taking your medication as soon as you feel better.  I learned this the hard way.  You are not cured...the pain is simply blocked.  If you stop taking your medication you WILL wake up with an elephant sitting on your chest and it will take you many months to gain the ground you have lost.
  9. DO take up a hobby.  All work and no play...and all that.  We live in a stressful world and stress worsens your condition.  Be creative, play a musical instrument, play a sport, sing, dance...do something that makes you happy and reduces your stress levels.
  10. DO not overdo things when you feel well.  You will pay the price for it the next day.
  11. DO NOT allow negativity into your life. That includes unsupportive doctors.There’s no room in your life for a physician, friend or co-worker who thinks fibromyalgia syndrome is all in your head. That just makes you feel foolish and guilty for being sick and increases stress, which is a pain trigger.
  12. DO listen to your body.  Take time out when you need it.
  13. DO NOT forget to always take a jacket or sweater with you where ever you go.  Cold makes your muscles tense up and can send you into a downward spiral.
  14. DO NOT underestimate the value of a good massage.  I will do wonders to your body and your soul.
I hope that this blog post will mean something to somebody out there.  Remember you are not alone.

xoxo

24 comments:

  1. Great post, Lynette. And I LOVE your header:-)

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  2. Would you believe I don't think I've actually heard of fibromyalgia .... Sounds NOT fun......the only bit that sounded good was the massages::))) glad you've got it (mostly) under control though...& that this helps someone out there:):)

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  3. Hey Lynette sounds like really good advise for life too.
    Glad you are so positive & pro active.

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    1. In the early days I was flying by the seat of my pants and positive attitude.

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  4. I have several friends who suffer from this .. thanks for the information -- I am going to send them to this post :)

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    1. If sharing my journey is helpful to somebody else I would be blessed.

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  5. Thanks for sharing this my friend!! Once when I was in hospital with pneumonia there was another patient with fibromyalgia.
    She explained it to me as 'constant pain' which made me sad! I hope you can stay relatively pai free! Hugs!

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  6. oh my gosh, I LOVE your header - it is so darn cute!!!

    Loved reading about fibromyalgia and your tips (esp to stay out of the chatrooms). I'll never forget when I was finally pregnant and I happened to go into an infertility chatroom where everyone was talking about all the horror stories. I actually decided there and then it's not for me! I need to guard my heart and mind.

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    1. PS also love your new profile pic!

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    2. Thank you Marcia. Chat rooms are the most negative thing I ever experienced. I felt so despondent after hearing all the moaning and groaning in there. Not one positive attitude anywhere in sight.

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  7. Looks like one set of baby toes is missing from the profile picture:) :)


    Oh dear, so sorry to read you were going through so much pain! Must be a real pain (pun intended) LOL. Sorry wasn't trying to make light of the situation. It's just a relief that you are better. I didn't know tramacet was such a strong pain killer.

    The dreaded chat room. I read a few while pregnant and I could have sworn from certain symptoms I read about I was in labour at week 34!!!!

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    1. It is a real pain. I have learned never to take feeling good for granted...but I do enjoy having pain free days.

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  8. Sorry for the pain you are going through and thanks for sharing such great information!

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  9. Hi Lynette - what a difficult ride its been for you, my friend!
    I'm so glad you have found a way that works for you -
    Thank you for sharing tried and tested advice with others.
    I have a young friend who really battles with this awful illness and have sent her the link.
    I know she will benefit from it.
    XX

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    1. It has been a journey. Without the Lord I would have probably fallen into depression in those early years. I think the Lord has a sense of humour. There was nobody that could do my work at the Mission...so I just had to go on whether it was a good day or a bad day. Maybe that was also my saving grace.

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  10. Thanks, Lynette. I have also recently been diagnosed with fibromyalgia, after many years of pain and many different specialists. I have recently seen a neuro and she has referred me to a rheumatologist. I agree with so much that you said and I too have chosen to walk victoriously through life. I have decided not to live a life determined by my condition, but rather determined by my position (in Christ)! God is good and life is too amazing to spend in the pit of despair. Keep doing what you're doing and keep warm :)

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    1. Angie, you are most welcome. I pray that you will find the right pain blocker and that your pain levels will be manageable. If you have questions I would love to help.

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  11. So sad that chat room are that way instead of uplifting. Love that tackle this with such a great attitude.

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    1. Louisa...what I learned from chat rooms. They are not for support. They do not build into your life. They don't give advice towards getting better. What I found is that it appears to be a competition about who has the most pain, how awful life is and who takes the most drugs. Depressing to say the least.

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  12. Thanks for sharing.. When I was 26 I was told I had lupus.. auto immune disease, no cure just treatments.. I can relate to what you are saying.. I am careful about chat rooms... it almost appears as a contest to see who is the sickest and how many drugs you are on.. Your mind is a powerful tool.. so is prayer and getting prayer from those who have the gift of healing from God.. and perseverance.. and stubbornness!! hehe!! and yes this is life.. not a dress rehearsal.. and then, the thought of Heaven.. pain free for ever is pretty good too!! take care of yourself!!

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    1. Yes...totally agree with what happens in the chat rooms :-P

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  13. Blessings to you everyday Lynette and you certainly are still doing amazing things with your life! You go girl! xx

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  14. Wonderful advice for those of us who live with pain every day! Having a hobby you love is definitely one of the best things for any and every one as that place to escape to helps so very much.

    I am so happy that you found the right medication and agree that once you feel good doesn't mean it is time to go off the medication.

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  15. Yahooo Lynette! Congrats! Another fabulous layout! So well deserved!

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