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Tonya’s Story (Fibromyalgia)

Tonya's Personal Story Chronic PainMy name is Tonya, I am a 42 year old wife and mother of two grown daughters. I have been in pain since I was about 13, when I was diagnosed with Juvenile Rheumatoid Arthritis. At that time it only affected my knees. Then in my early twenties I was tested for lupus and rheumatoid arthritis, all tests were negative. I was told to get more sleep and to live with it. I have struggled with random pains ever since. Although while I was pregnant with my girls the pain did subside.

In 2003 my husband was diagnosed and treated for testicular cancer. After 12 weeks of treatment and lots of running around, he was cancer free, and still is. Also, in 2003 I took a hard fall down some slippery steps severely bruising my tail bone. After about three weeks my stomach started to flare and I was diagnosed with IBS which I was told was stress induced. I had to learn how and when to eat to make it thru the day, whether I was staying home or going somewhere. I went to see several more doctors and had more tests done, had my gall bladder removed, some endometriosis removed, and tried several meds that just didn’t work. I was then diagnosed with Ankylosing Spondylitis and was treated with prednisone and plaquenil, which made no difference.

In Nov. of 2010 I started treatments for fibromyalgia; weekly IVs, weekly viral shots, iron shots, and I was taking 62 pills/supplements/hormones a day. I changed my diet and did as the dr told me to do, nothing helped.

After 11 years and several drs later I am still looking for answers. I recently went to see a new Rheumatolgist and she confirmed the fibro diagnosis, told me that I have bursitis in my hips, and is testing me for the Ankylosing Spondylitis. She is referring me to see a neurologist for my migranes and prescribed me with amitryptiline to help me sleep. I am getting more and more frustrated as time goes by and the pain gets worse, I am tired of waking up in so much pain and not having the energy to do the things that I used to do. I try to walk 4 miles a day when possible and I am trying really hard to eat right. I do have a supportive husband and both daughters are too, but I just don’t think they understand how much pain I really have.

Tonya
Washington
Submitted 4-13-11

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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9 comments

  1. William Sifonte

    Nearly half of patients diagnosed with fibromyalgia relies on alternative therapy to try to improve the symptoms of his illness, and one in three sees success, at least in part. These therapies allow only 3 per cent of those affected leaves the conventional treatment. These treatments are best buy painkillers online as vicodin and lortab, so it should be used increasingly more.

    William Sifonte
    Findrxonline

  2. Sonya

    I so feel your pain literaly………

    • Dianne

      I do feel your pain…………..I only know too well the pain of fibromylagia. Mine started 11 years ago, and came with all the side affects you talk about. Pain (everywhere) fatigue, depression, insomnia-(a big one for me), we wait for the medication to work on our pain, and it never does quite the job we thought it would. We not only suffer, but our families also. My husband tells me he prays for God to take my pain away. I believe fibro. is both genetic and comes after a long time of grieving/stress. Mine came just a few years after my father passed-away, my cancer diagnosis, than the passing of my grand-mother.
      I do know for me, joining a gym has helped. Even though there are times I literally don’t even want to get out of bed, I force myself to go to the gym, go for that walk, spend time playing with the grandkids, when all of a sudden my pain is not #1 on my list! Its hard, but try to have a positive outlook on life, volunteer, visit senior centers, play with children, garden, anything you can do that will not bring on immediate pain. And if it helps you to talk, please find a group or others who, like you have the same diagnosis.

  3. Linda Hess Austin

    Tonya, I have known you forever. I am sorry for what you are going through. I love you and your husband and girls dearly. Living in pain is hard. I remember watching my mom, it hurt to walk, lay down even to sit. Even watching my dad was hard. Watching you and your husband go through hard knocks of life, I have realized how strong the both of you are. I take powder medicine every morning so that I can eat, it was like a miracle when I went to Olympia to a specialist that helped me with my stomach issues. The medication is called “Cholestryramine for oral suspension usp” I mix 1 scoop every morning in a small bottle of Sunny Delight. Believe me it works… I can take it and eat within an 1/2 hr and the food stays with me. They took my gallbladder thinking it was that but it didn’t help, but the medication did. Ask your dr about it. I can’t help with the other problems but hopefully this will help with your stomach. Love to you and your family. Take care and think of you often:)

    • Jodi Martinez

      Linda…I used to take that as well…but you might try going on a gluten free diet, or having your doc test you for Celiac Disease…it’s VERY VERY undiagnosed in the USA…I used to be on that medicine as well, it helped, but after a while it didn’t help…the first three days are kind of weird, but after that it’s a breeze…I do notice that my fibro doesn’t flare up as much when I stick to the diet…but when I do eat something with gluten in it on accident or because that’s all we have in the house, I about can’t move the next day…Just something to think about…Fibr and Celiac do go hand in hand as well….

  4. Anabel

    I really feel for you in my heart and understand some of your pain I only pray all get’s well soon and at least less pain or no pain if possible in Jesus name Amen, if you aren’t religious I’m sorry . What ever that keeps you focus may you get well , I admire your courage in Life!!! OX’S

  5. lyvonn

    i started having symptoms as a teen…..was told ” growing pains “…….in 1992 i noticed it more but didn’t tell the dr…till 2 years ago when i suddenly woke up & couldn’t bend at the waist…..i also have chronic fatigue syndrome…..i live alone & have to work full time…..even tho this is very hard considering i might sleep 2 hrs….before going in……i found that sitting or laying down for longer than that makes it harder to move……my dr. wants me exercising 3 times a week for 20 min……been trying but i find it wears me out…..so tired of people saying…….” you don’t look sick “…..or thinking that fibromyalgia is “just ” sore muscles…..they don’t have a clue……..

  6. Jodi Martinez

    Tonya…have they ever tested you for Celiac Disease instead of just saying IBS…Just wondering because I had the same symptoms and it’s actually the Celiac disease that started my fibro….I am allergic to gluten, which is found in most things…you might look it up as there are several websites to research it as well….It’s worth a shot…I was going to a gastroentologist and he never checked me for it either, just kep giving me more and more meds that didn’t help…Good Luck Honey..and TRUST me, you’re not alone….

  7. Cathy

    Tonya,
    I am 57 years old, was diagnosed with fibromyalgia in 1999 with symptoms beginning in 1982. It’s been a long hard battle but here I am. I can share some of the medications that seem to help me with you. I’m not pain free and don’t ever expect that but I may actually have as many good days as bad. I found it interisting that we both have broken tail bones! For sleep I am prescribed a medication called Trazodone, basic daytime meds are Celebrex , Robaxin and tylenol. Through pain management I take 3 10mg percocet (if needed) a day and am still working on having a more pain free active life. Many believe in exercise, I am very satisified with moving around with house work and getting 1 important task done a day. Feel free to Email me if you’d like more personal information.

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