Posted by TENA/ DIAMOND on 1/2/2009, 4:34 pm, in reply to "Re: Letter to NY Times #9"
To whom it may concern; Fibromyalgia is very, very real. Believe me! I am a 59 yr. old grandmother who, in my earlier years, had the stamina to attend to my house, my husband, my children, & to gentle, train & ride horses. All without missing a beat. And, I'm not stupid. I graduated from High School at the age of 17 yrs., going on to earn a degree in Commercial Art alongside the late, great Norman Rockwell before marrying my first husband. Always athletic. Would swim, hike, camp,herd cattle from the back of a good horse....... .......& more! Then, about 20 yrs. ago I started HURTING.
And, I felt PAIN all over me....most of the time! I thot I had the flu. I didn't. I'll leave alot of boring story out & just say I was FINALLY diagnosed with Fibromyalgia, Chronic Fatigue, hypertension & arthritis. I went from having perfect vision to cataracts & seeing flashes of light in both of my eyes. Mostly, I see out of eyes that don't focus & looks like they're coverd in wax paper. Now, I use a magnifying glass to see decently. I no longer ride my horses because I'm too tired & there's too much pain. I miss it so much I cry....alot! I feel I have been robbed of my LIFE as I once knew it. I usually don't have the energy to be a decent wife to my husband. I can't keep my home as clean as I'd like. Some nites I do not sleep.....which just makes my condition worse. It effects my hearing, my sense of touch. My hands & feet go numb,alot & there's no control over this. It comes & goes like it isn't even part of me. I can't pick things up. A glass of
water can & will fly right out of my hand! I have been known to stop watches & start computers just by walking close to them. I have migraine headaches! I forget where I live or what I was saying. Or, a friends name. But, you say it's all in my head?????? Well, IF it is.....I don't want it anymore. YOU TAKE IT FOR AWHILE & SEE WHAT IT'S LIKE. Try it. You won't like it. It ruins your life. I have a friend with Fibromyalgia who is,now, in a wheel chair & sucking oxygen day & nite!!! Another friend has Fibro. & it morphed into M.S.!!! Yes! It did!!! Another friend has BOTH FIbromyalgia & Lupus. Try living with THAT for awhile?!!!!! Just try it!!! And, I could go on & on....but, I won't. My time is precious & limited & I have a husband & 2 dogs & 2 horses who love &, so far-so good, NEED ME! You, dear sir, can go fly a kite!!!! You don't know what you're talking about. Thank you for your time. Dusty Williams R.R.#2 Box 87 Columbia Cross Roads, Pa. 16914
Phone: 570-297-4337 ************ ********* ********* ********* ********* ********* ********* ***** I have had fibromyalgia for over 25 years. I had been having muscle tenderness and pain and was finding myself getting so exhausted, I would start getting weak and then could only lay on the floor and could not even lift my arms to make a phone call. My children had to fend for themselves when they got home from school. I finally got a Dr. to listen to me and he ordered gallbladder tests. I had the gallbladder removed and could not get my strength back, and had pretty severe pain and more severe fatique. My own Dr. would not listen to me when I told him I was so weak. I finally, after fighting with him, got him to take a hypoglycemia test. He called immediately, and put me on a diet, as my blood sugar had gone down to 36 during the test. After that the fatique was not as severe, but the tendernesss and pain continued. I had been to many DR's and told me
that there was nothing they could find to be causing my symptoms. A friend told me the Arthritis Assoc. had a brochure that described the fibromyalgia, that she had gotten from her Dr., as she had some of the same conditions, i.e., the tenderness and pain. I went to a rheumatologist, because of the tenderness and pain in so many areas of my body. The pain was not severe, but did affect my life as I was unable to do many things that I had done before. I was diagnosed with fibromyalgia, and was told is was a secondary condition to another physical condition and then told it was from stress and would go away in a few months. It was suggested that I should go back to my Dr. have more blood work done -- to rule out any other conditions. I decided if it was stress, I would go to a psychiatrist and find an answer for it. After two meetings with him, he indicated there was nothing mentally wrong with me to cause this condition. But to help with stress, if it
was causing the problems, he recommended I go to a biofeedback psychologist, which I did. It did not help my condition, and finally the physcologist recommended I get to a DR as there was a medical condition causing my symptoms. He recommended his own internist, A Dr. John Harsany, I went to him and he took the tests suggested, and then diagnosed me with Lupus, as the underlying problem. My greatest symptom beside the tenderness and pain was fatique ( I call it exhaustion ) I lost so many days from weakness, that my quality of life was changed. I also have IBS, which gets progressively worse.
Since then it has been debated by other DR's whether I have Lupus or Just Fibro. My nuero-opthamologist found damage to the optic nerve, and indicated it was caused from Lupus. This was also debated by different DR's, but found to be the case. Then I found I had degenerative disk disease also. A disk was pressing on my spinal cord and Ihad to have surgery to keep from being paralyzed. That was three years ago. It took over two years to get relief from that pain. Gentle pool therapy and physical therapy and massage helped a lot. My internist, Dr. John Harsany has been treating me for many years. He gets frustrated because drugs do not work for me. My symptoms continue to spread and get worse. My prednisone for my lupus in my eyes, has now caused diabetes. Something, has started to affect my kidneys -- pain and bladder pain. Dr. Harsany sent me to Loma Linda University, where I found a rheumatologist who does not dismiss my symptoms, acknowledges my
fibromyalgia, debates the Lupus, and has now diagnosed me also with Osteoarthritis, and is checking for Rheumatoid arthritis. The arthritis symptoms could be from Lupus. Because most drugs do not help, I was sent to a pain specialist. She could do no more for me, as the drugs she gave me did not work. She sent me to a nuero physcologist.
Now I thought, Here I am again being told there is nothing wrong with me, its all in my head. What a refreshing and encouraging visit I had with the nuero psychologist, Dr. Michael Gilweski at Loma Linda University. He was a Fibromyalgia specialist when he was working at Cedars Sinai Hospital. He has shown me that Fibromyalgia is a recognized condition -- and that it causes (IT IS) the stress all over the body, and has affected the kidneys, bladder, etc. He knows that drugs are not easily tolerated by fibro patients, and he will use new biofeedback training to help ease the pain. I have only had one visit with him so far. And I am looking forward to finding some relief for my pains, without the physically addictive drugs I have been on for so long. It is bad enough to suffer for so long from debilitating symptoms, and then be told basically "it's all in your head." That in itself gives you cause to wonder if it is worth it to continue to live. It gives
people around you reason to doubt you and your problems. If I did not have a husband who has had to deal with my physical disabilities, and support me in my quest for an answer, I would have given up -- because of DR's who continue to say -- there is no reason for your miserable life. It's only when you find someone who understands, and believes, that gives you reason to hope for a more productive life without pain and fatique, and other physical ailments. We have come to a conclusion in our family, it is: ask a dozen different ************ ********* ********* ********* ********* ********* ********* *****
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