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    LINDAF49    
 
 
My Fibromyalgia Journey

Tuesday, January 10, 2012

I wrote most of this a year ago for a friend seeking encouragement with firbo. I was diagnosed January 2000. At that point I was in severe pain ALL the time and in bed much of the time. Soon after first diagnosis, one of the doctors for other issues said to me: " I don't treat fibro, but if you have it,
then study it daily,
choose a course of treatment
aggressively care for your own health needs
and move forward"
I still study it weekly looking for encouragements, confirmations and things to add or eleminate from my efforts to maintain health. The following is just a tiny portion of what I am doing today, 12 years into this disease. I agree with much of the theories of Dr St. Amand and protcul for treatment with Guaifenesen. Get on the internet and read, read, read; order books through the local library; then talk, laugh, cry with others who have this disease but keep the pity parties to a minimum.
I space my supplements and meds out in four doses through the day:
6 am 12 noon 6 pm 12 midnoc
Fish oil 1200mg x4 doses
Centrum Silver ½ 6am 6pm
Vit C 500 x4 doses
½MagMalate 825 x4doses
Calcuim 333mg 4 doses
½ B Comp 50 12 noon 12 midn
Yogart or Kefir 12 noon and midn Adding another probiotic with it
Vit D 2000 12 noon 12midn

Guaifenesin ... if on Dr. St.Amand portocul in divided doses
Other supplements for family Hx of heart disease and Parkinson's

Minimum pint of water, tea, clear liquid per 6 hours -space it over the day -not all at once! Caffeine one and ONLY one serving in the mornings

Get sleep or at least time in the bed with lots of pillows and support to body. I do much better with head of bed elevated slightly and air humidified --- most of my pain is in control if rest and energy expenditures are maintained at gentle even paces. I sleep 2-3 hours, then up to potty + yogart and midnight meds; Sleep 3-4 hours Up to potty and stretches... might go back to bed for another couple hours or be up for correspondence, study and meditation/prayer Then nap 40 minutes to two hours during mid-day.

Surround self with warmth and softness - pillows and blankets go with me everywhere! Especially traveling, support arms with pillows and move often - never sit more than an hour in one position, get out and walk, stretch, move gently.

Set limits – Only you know your body's limits on any given day. Yes, there will be days when you feel you must push beyond those limitations to meet family or work obligations. But at what price? You must decide. Learn to say "today I can only do this much…don’t push me beyond that or I suffer for three days”

Organize/Plan – Pacing yourself is very important. You will have days with limited energy reserves. Organization and planning reduces mental stressors. But do not become compulsive with planning ...Think PREVENTATIVE Care

Set priorities – What are YOUR priorities? Not everyone else's!

Educate yourself – Make a commitment right now to ongoing education about your condition. As one who has Fibromyalgia and/or Chronic Fatigue, you should commit to becoming an expert on the condition. Visit a different website each week. Read or re-read a new book each Month.

Eat healthy …and make extra and save a serving for another day and save yourself a lot of work! I must avoid much sugar and this year am learning general low carb eating.

6/2010 The Three Ts to heal and persevere through a chronic illness are TEARS , TALK and TIME. These 3T's help me cope with life with Fibro.

1/2011 Removal of gluten from diet has been shown to reduce inflammation and alleviate aches and pains, and this symptom-reducing quality is a possible help for fibromyalgia patients. The changes to your diet won't be painless, but the relief to your physical pain just might be worth it.

You will notice, not a single perscription med here - I have in the past but gradually got off all them - but my Dr has the list of supplements and approves it - we talk about different aspects of the meds and results on routine basis and "tweek dosages" . My only pain med is advil or aleve in flare ups --and if I need it and I know it is a flare, I just take them routinely every 4 hours round the clock times 3 days to stop the pain cycle - Only other thing that is real significant is the horrendous leg cramps, I take a naturopth quinine tablet and also drink 4 oz tonic water in warm gator aid or orange juice if available and always keep my feet and legs warm. 1 notice a definite increase in cramps with beef, sugar in diet, if dehydrated or have just overdone that day.

I pray that this summary will be of help and encouragement to others with this diagnosis or find yourself the support person to one suffering from fiybromyalgia.
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  Member Comments About This Blog Post:

EMILYD1952 2/24/2012 2:33AM

    Thanks Linda!

I am also on this journey with you.
I appreciate all the info.

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GRAMMACATHY 1/12/2012 6:16PM

    Avoid processed food and refined and artificial sugars as much as possible. I also drink green tea and Braggs organic vinegar. We have a similar vitamin regimen too. I think my problems were caused by a tick bite, but after three months of being off work, I lost my health insurance, so was motivated to research natural healing. I am a huge believer in natural remedies. They worked so much better than what the doctors prescribed. In fact the gabapentin was what was causing my tremors. As soon as I weaned myself from that for the muscle pain, I was tremor free. Wheat and corn both seem to aggravate my symptoms, so have pretty much eliminated both except for special treats. Your blog means a lot to me. It is nice that we share this success too besides the Great NW and a desire to minister to those grieving. Glad we met on SP.

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RAINBOWFALLS 1/12/2012 4:38PM

    It is great that you have put so much into your treatment. emoticon

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2MILESADAY 1/11/2012 5:26PM

    Thank you Linda! This is so help and so encouraging!! Makes me feel sane and gives me things to research! I lived so long without answers as to what was going on! I was so mad when told I had Fibromyalsia, but it is a blessing to know what I am struggling with after years and years of not knowing just having all this pain and wondering if anyone really believed me! Thanks for the info! Nick work listening to your body and finding what works for you! That is the road I am starting on!
Kara

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SWIMLOVER 1/11/2012 4:19PM

  Linda, I don't have fibro but I will be praying for you. Sounds like you have given some really Gread Advice. Thank You for helping others!

GOD BLESS!
Louise

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