So not only did you teach me about writing memoir, you also taught me about reading and thinking about how others write memoir. Thank you so much!

p.s. my mom now refers to me as the family "chronicler" - getting down all the family stories. How I love that title!! :)

Saturday, June 8, 2019

Fibromyalgia or Polymyalgia? What do the doctors say?

Although I spent about five hours Wednesday at my part time job, NCWN-West Program Coordinator, I could not drag myself to physical therapy on Thursday. I had a fibromyalgia flare-up. If you know anything about this health issue, you know it drains you of energy, causes aches and pains in all your joints and makes muscles weak. It also affects balance.

I was diagnosed with fibro in 1991 after going to doctor after doctor looking for someone to tell me what was wrong with me. I had begun to think I had a rare illness that was terminal since none of the doctors I saw in Albany, GA had a clue. All the blood tests results were "normal" but no one knew why I suffered with the symptoms mentioned above. 

Finally, after months of seeking help, a rheumatologist said he thought I had fibromyalgia. At this time, the AMA did not recognize fibromyalgia as a legitimate health problem. But this young doctor knew that with the pressure points on my body, the fatigue and aches and pains plus insomnia, I fit the picture of a person with this illness.

Years later, another rheumatologist said he thought I had polymyalgia instead of fibro. Both fibromyalgia and polymyalgia are characterized by muscle pain, but many other aspects of the two conditions differ. Polymyalgia, or polymyalgia rheumatica, is an inflammatory disease of muscle. ... Fibromyalgia is not an inflammatory condition. This article gives a more diffinitive difference between the two.

I have learned to live with it after all these years and I have been fortunate to continue with my life, pacing myself, getting help from my friends when I need it, and always reading new treatments and trying things that have worked for others. 

After my diagnosis in 1991, I continued to work part time in an office although there were days when I thought I would have to lie down on the floor and sleep. Exhausted and in pain, it was almost impossible to make it until I could go home.

In 1995, Barry and I moved to the mountains and I did not go back to work. But the stress of moving set me back physically. For three years I struggled, taking medicine prescribed to me by a local primary care doctor. The side effects of the drugs caused me to gain 20 pounds and I could not tell they helped the fibro pain. Stress is one of the worst things for me.

When the Internet became easily accessible I found there were many people with fibromyalgia and most doctors were recognizing it as a real health problem although they don't call it a disease. One local woman, much younger than I, said she barely made it from her bed to her sofa everyday. She had no quality of life and had become extremely depressed. 

I was determined I would not give in and let my life suffer as she did.
I sought other means of healing myself. Massage was one and also acupuncture and chiropractic have helped me over the years. I don't eat processed food if I can help it and I eat fresh fruits and vegetables. I eat very little red meat. My diet is pretty good for someone who lives alone and hates to take time to cook just for me.

My family has always been believers in healing yourself with natural remedies when possible. My mother read widely about self-healing, and we seldom went to doctors when we were kids. Some of her methods she found in books and newspaper articles. She took two or three drops of iodine in a glass of water every day to keep her thyroid working well. She worked hard, cooking for seven kids and her husband and keeping house and doing laundry. She seemed to never tire, but I know it must have been hard for her. She was the strongest person in our family.

She gave me brewers yeast when I was a child because I was anxious and she felt I needed B vitamins. To help me with energy, she made me a milkshake every day with raw milk from our cow, raw eggs, brewers yeast, chocolate and sugar. It was quite good.

Although our medical profession has made great strides in critical conditions, it seems the answer for most of us, especially those of us with poor immune systems, has been sadly neglected. Diabetes is considered an immune system condition. We are told there is no cure. Many health issues are not critical nor life threatening, but they play havoc with quality of life. We are told to change our lifestyle, eat certain foods, take certain supplements, and get plenty of rest. As a last resort, when we can't stand the pain or other symptoms, our doctors tell us we need steroid shots. And we know what happens to us when we depend on those drugs.

But no matter what we do, we can't always find the solution for ourselves. We pay lots of money for insurance, but when we need a special medicine, the price is too high for us to afford. The pharmaceutical companies pay for hundreds of lobbyists in Washington D.C. and, as a result, they keep charging their exorbitant prices. 

I learned today that Medicare is not allowed to negotiate for lower prices for drugs. At this time, Congress is looking at bills that will correct this practice. I hope all who know about this will contact their representatives.

My latest new effort to help pain is taking curcumin. But it must be the best kind, the right blend, and the right dose. Now how do I find that? I start my search tomorrow. If you have taken this product, what were your results?

Tomorrow is another day, a day to be thankful for all I have, for the wonderful friends and family who never let me down and for the chance to enjoy the life I have here in these beautiful mountains of North Carolina. One of the best methods of healing ourselves is being grateful. 

Thanks for checking in with me, readers. I appreciate you. Let me hear from you.


Elephant's Child said...

Good luck.
I was actually relieved (though it wasn't on my wish list) when I got my diagnosis. There was something wrong, I wasn't a hypochondriac, and I wasn't going nuts.
Mostly it is liveable, but flare-ups of anything are foul. I hope yours settles quickly.

DJan said...

I have been taking turmeric for years, which is curcumin in a natural form. It comes in several doses at my health food store. Good luck and I do hope it helps you. :-)

Vagabonde said...

I don’t know much about this disease but it must not be easy. Being in pain and with no energy is frustrating. After my constant trips between Nashville and Marietta I get quite tired, my energy is low (my only pain is in my ankle where the ligament is gone,) and I don’t have an illness so I sympathize with you. It does not sound like there is much research on your ailment. I read that big pharma spends more on lobbying, ads, magazine and TV than on research. I heard that yoga and Tai Chi can help – have you tried that? Please take good care of yourself.

Glenda Beall said...

EC, you know how I felt when I got my diagnosis of fibro. I didn't want to have it, but was so glad to know what was wrong. I did think I was going nuts, as you say. When you look healthy and your lab work is fine, doctors tend to think it is all in your head.
I am still having some problems this week,but went o PT today and was told I am stronger than I was a couple of weeks ago. That didn't help the pain in my right leg and hip, but, heck, I will take any positive news I get.

Glenda Beall said...

DJan, I am going to look for Tumeric when I can get to the health food store. I think I will start with the highest dose available.
I wish CBD oil helped me like it seems to help others. I am still using it, but can't tell much difference in the nerve pain.
Thanks for your comment.

Glenda Beall said...

Hi Vagabonde, Thanks for your comment. I am glad you don't have an ailment that slows you down. You do so much, travel and post wonderful articles on your blog.
Traveling, driving long distances are hard for most of us. My drive down to Roswell, GA to see my sister is only 2 1/2 hours, but by the time I get my car packed and make the trip, I have to go straight to bed and rest. I have taken Tai Chi and Yoga, but with my chemical (fragrance) sensitivity, I have trouble taking classes where I can't control the air in the room. I do some Yoga poses at home to stretch my muscles and once I had a teacher who came to my house and we did chair yoga. That was good for me.
Take care of yourself. I know that you are still in mourning and that takes so much out of us physically and mentally.