...DEFEAT Chronic Fatigue Syndrome: ...............................................................You don't have to live with it
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ME/CFS Treatment – Working with a Provider

7/9/2013

2 Comments

 
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By the time most of us received our ME/CFS diagnosis, we had seen several practitioners hoping to find answers as to why we couldn’t regain our strength and energy.  Batteries of tests later, we still had no answers.  So we were labeled with ME/CFS/Fibro or whatever it’s called in your region.  For most of us, this pronouncement was accompanied by a complete lack of a treatment plan.

 So we are struggling with a chronic condition whose symptoms include pain, complete fatigue, brain fog and the inability to get restful sleep.  From this place of low functioning, if at all, we have no answers and no solid treatment plan.  And I don’t consider ‘rest and you’ll feel better’ a treatment plan.

What to do?  I flailed around for quite awhile before I started keeping a daily record.  But once I started, I began to have specifics that I could document and discuss with my provider.  Instead of looking for him to provide me with answers to my illness, I provided him with solid data about my patterns and symptoms.  Full disclosure, he never seemed to care much about my energy patterns.  But he liked seeing symptoms that he could directly treat.  And he loved getting feedback via follow up data to determine if the treatment had any effect.  So I learned to work with him as a partner.  It was a completely different relationship than I was used to but it worked for ME/CFS.

Do you have a provider that you’re working with?  How do you successfully partner with him/her?  Please COMMENT on this blog or Send in your thoughts and I’ll post them with your permission.  You can use the Contact Form or send an email to Martha at DefeatCFS dot net.  And Guest Blogs are most welcome!

Look for a weekly posting on Tuesdays.  And consider being part of the conversation.

Be Well Again,

Martha

2 Comments
Tim Boland
7/13/2013 04:48:23 pm

My first testings were done by a naturopath who told me that she had been a medical doctor but found naturopathic medicine more rewarding. Part of her advice was that I change my diet, which was already a very healthy one, to one suited for my ‘blood type’. I asked at the time if it was wise to make a radical change in diet, wouldn’t it be better to do it gradually. She said not to worry. I wish I had listened to my intuition on this, as my body and sense was right, the big change caused digestive problems I’ve never had and which persisted for months.

She did do many tests which were helpful though in the end, as you say Martha, after eliminating many things, it was likely either fibro or CFS. My primary doctor is good in that there was no struggle convincing him of the validity of CFS, he feels CFS is the better diagnosis for my illness. He recommended some of the meds you suggest in your book. One in particular as a sleep aid has made a huge difference, as I was having trouble at one point sleeping more than two hours.

He isn’t the best listener but is aware of the illness and told me two things for which I’m very grateful. One, that he had a patient with CFS who recovered completely, and I appreciate his honesty when he said ‘it was nothing we did’, he body recovered over time through its own healing process. The other thing he said when I was last in was ‘you’re doing great’, his reassurance does carry extra weight as he sees so many in his practice.

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Martha
7/14/2013 04:52:12 am

Many of us have a similar diagnosis story to yours Tim. It's great that you have developed a good relationship with your provider that includes honesty. Glad that your restful sleep is markedly improved. Wonderful that you're getting better and it's being validated by your provider. Congrats and thanks!

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    Hello,  I'm
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    After struggling with CFS for four years I am fortunate now to be fully well and making choices about how I want to live my healthy life.  One choice is to be an active part of the CFS community and to offer one voice from the fully recoverd to the dialogue.  I'm glad you're here!   For more about me, here's my Bio.

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