Monday, May 12, 2014

Fibromyalgia - ALL IN YOUR HEAD?

I actually had a medical doctor tell me that once we were able to get my depression under control, the Fibromyalgia would go away.   I told him that he had the dynamic backwards.  I explained that I NEVER struggled with clinical depression until AFTER I was diagnosed with Fibromyalgia. 

I have heard about every sort of homeopathic, alleopathic, naturopathic "cure" for it.  One woman said that taking baths with Epsom salts 15 minutes a day for two weeks would cure Fibromyalgia.  It did help with the generalized overall pain, but it did NOT cure the overall symptoms and causes of the disease.

I have lived with Fibromyalgia since 1991.  I received a double diagnosis.  I was 34 and I was diagnosed with Breast Cancer, AND Fibromyaliga.  Two lumpectomies, and 25 radiation treatments, and I have been in remission from Breast Cancer for 22 years plus.   I am ever so grateful that my Breast Cancer has been in remission for all this time.

I wish that my Fibromyalgia would go into remission and stay there!  One of the first things that I learned about Fibromyalgia is that there is no cure.  Once you have this disease, you will battle with it for the rest of your life.

I am still very grateful for one of my sister-in laws who sent me a wonderful resource book shortly after my diagnosis.  She, unfortunately, was diagnosed with this disease before me.  Bright, and studious she had done research to find this wonderful book written by two medical doctor's who both have Fibromyalgia.  I would love to share it with you...but that was over two decades ago, and I don't know where that book is any more.  (I could probably find it if I was given a week to look). 

Even better than having the book was the knowledge that I didn't just have to give up living, and let this disease be in charge of me.  I have done years worth of research.  Some of the things that I initially learned about Fibromyalgia have later shown to be false. 

Still there are even pain specialists who do not understand this disease, what triggers it, if there are hereditary factors involved, do exercise and diet play a role, etc. etc.  I actually had a pain specialist tell me, (less than 5 years ago), that Fibromyalgia was a "Throw away diagnosis."  That means that he didn't even think it was a valid condition.  Forgive me but I secretly wished him a temporary case of Fibromyalgia.  I would love to have seen his response when he had this "Throw Away" condition.


1.  YOU MUST be your own advocate.  Many people are able to continue working while they manage their medical condition with the help of a combination of western medicine, exercise, and alternative medicine such as acupuncture, massage therapy, etc.  If a well meaning clinician tells you that you aren't feeling what you know you ARE...don't believe them...believe yourself!  Do research, find sources that can back up your needs.

2.   Learn everything that you can about this condition.  Knowledge IS power.

3.  If you have done all in your power and your condition simply makes working impossible, apply for disability.  I was told that nobody ever is accepted for disability with the diagnosis of Fibromyalgia.  I received approval the very first time I applied.  I was very clear in listing the details of my job description, and then one by one I listed the physical challenges that made those details impossible.  If you are not able to wage the battle on your own for whatever reason, get an attorney.  Legal clinics will often take a case pro bono (free) to give their students valuable experience.

4.  Find a support group, or create your own.  It's critical to have someone that you can call to say, "I feel really lousy!"  Or someone that YOU can lift and help teach meaningful ways to face this disease.  Being able to help others cope with Fibromyalgia helps me to affirm that there is a purpose for living with this syndrome.  Being ill can make you feel extremely isolated.  Don't quit living, just find new ways of doing things.

This sounds weird, and I am NOT a masochist, but this miserable condition has given me some powerful gifts.  I have learned lots about empathy, and about what really matters in life.  I have learned that it IS possible to find joy even when you may be stuck in bed for a while.  I have also learned that "chair aerobics" are better than no movement at all.  I have made many friends that I wouldn't have met otherwise.  It's remarkable to me how many amazing people that I've met that do not let this disease define them, but neither are they ashamed that it IS a part of who they are.

If anyone reads my post and has questions or comments I would be very happy to answer them.  Fibromyalgia is NOT curable, but it is also not terminal.  You CAN have a positive quality of life, even when faced with a "New normal."

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