Being Diagnosed with Fibromyalgia

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edited January 2015 in Coping

Fibromyalgia article: Being Diagnosed with FibromyalgiaBeing Diagnosed with Fibromyalgia

Being diagnosed with fibromyalgia is a difficult thing to cope with. Dina shares her story and offers her tips for getting through.

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Comments

  • Useless
  • It's hard to deal with the pain. My youngest is my 7 year old son. He's a momma's boy. He likes to sit by me on the sofa and twist my hair. It actually relaxes me but when his elbow sits on my arm, it feels like his elbow is stabbing me! Any sudden move and I'm on alert hoping he doesn't touch my tender points. My husband can deeply rub my neck and upper back and other times he will have to do it lightly cause it kills me. It varies each time. I tire easily but when it comes time to go to bed I need help with ambien. Then there's Zoloft and buspar and Prilosec and blood pressure med-ziac then tramadol for pain. And here recently it's not been enough. I can take 2-3 tramadols at one time. And by the evening I could take another 2 at 50mg each. My mom has fibro and we both figured I had it too. Just took so long to get the diagnosis. Now I live day by day. I'm only 41 but feel much older.
  • I was diagnosed with Fibromyalgia 10 years ago. But back in the 80's I hurt my back while working as a nurse. I had to go on SS Disability in 2011 as I could no longer get out of bed in the mornings to go to work and I suffered all day in pain and could not concentrate any longer on my work. I also have bulging discs, others are degenerating, spinal stenosis and now I was told I have Spondylosis of the spine. Just trying to go grocery shopping anymore will put me down for 1-2 days to recup from the pain and how tired I feel. I am on pain medication I never thought I would have to take, and now the doctors are suggesting a pain pump because I am only 60 and my liver is already showing inflamation! They feel by having the pump, the medicine would be put directly into my spine. I will not lie, I am so scared! I do not even know how much if anything my insurance will pay for this and how much they will cover for the medication that will be used! I have few friends left, as most of them cannot understand what I am going through, and they are still very active and cannot understand why I cannot join them in doing things I use to be able to do! I get so down sometimes, but thank god for my faith, and I try to meditate everyday and do some yoga stretches to stay limber. I also did Ti-Chi years ago and am thinking of trying that again. Thank you for this group, so I can at least talk to people who are going through the same thing and know how I feel!!! God Bless You All!!!
  • I have had fibromyalgia for 56 years. After the birth of my daughter in my early thirties I became severely affected by the pain and the depression and wanted to kill myself almost every day for a decade. I've been through hell and back. I did follow Winston Churchill's advice however "When going through hell keep going". My allodynia/hyperalgesia was severe and some days a breeze caused me pain. Standing, sitting and lying down all were unbearable. My husband finally left and I was on my own with my daughter.

    I realized early on that no one was going to help me but myself so I studied and I became my own doctor, druggist and dietitian. Although travel was nearly impossible I did get on planes and went to fibromyalgia conferences in the nineties and learned from the featured speakers, doctors (all men) who were lecturing what they were doing for a protocol and I followed that protocol and I got better each and every year. I now am a Fibromyalgia Educator and teach sufferers how to recover and live there best lives. I do find Integrative care works best as traditional medicine doesn't get to the root causes of Fibromyalgia.

    When I look back at my healing journey I thank the powers that be that my persistence paid off. Everyone can reduce their symptoms once they understand the hypometabolism issues.

    The hallmark symptoms of chronic debilitating pain and unrefreshing sleep have a Central Nervous System evolution that can repatterned through supplementation, stretching, proper nutrition and mind/bodywork. Low Dose Naltrexone and a few other pharmaceuticals can supplement for the bodies shortcomings. All I know is that no one could g ave been morr compromised than me and if I got my life back anyone can.
  • It took me YEARS to get a diagnosis of Fibro. In fact it was me bringing an article into the doctors office about the 18 sensitive points of Fibro that got her to do the test. Several of the spots I about jumped off the examining table, it hurt so bad. Ever since then I have been diagnosed and treated with having Fibromyalgia. It was self study and reading that got help for me, as Fibro just wasn't something yet recognized by the medical field. I still haven't found the level of relief I feel we should have being its been over 20 years since they recognized the disease. I ache and hurt so bad some days that I just can't go out and do anything. I joined your group in hopes of finding more education that may help me, and now my 51 year old daughter.
  • Maybe I'm missing something, but it seems strange that your doctor would give you a diagnosis of fibromyalgia because of your extreme tiredness. Chronic fatigue is a factor for just about everyone with fibro, but not the other way around. I was diagnosed back in 1997 by a rheumatologist by the only method they pretty much had-the 18 pressure points. I had 16 out of the 18, and they were all extremely painful. I also have osteo and rheumatoid arthritis and chronic fatigue. I know that some things work for some people and not for others, and then not all the time. It's extremely frustrating, and it is a big help if you have people who support you. I've also finally learned to listen to my body and not fight it-if I need to rest or sleep I do it. When I am having a good day, I try to get in a bit of exercise or do something I like doing. I was on painkillers, came off of them, but realized I really needed them, so I went back on. I'm monitored by my doctored and get back shots 4 times a year.I use thermawraps, and pain gel from a compounding pharmacy. I have also started gentle yoga. Being in hot water, like a jacuzzi really helps me too. I still have pain everyday, but some days are better than others. I hope everyone can find something that makes them feel better too.
  • Hmm, I'm afraid that not all drs are trained to diagnose fibromyalgia mine certainly wasn't. At first they thought that i was depressed, not so, then they thought i had a virus, not so. It took months to have some form of diagnosis. Even then once i had a diagnosis the drs said that the pain was due again to depression, no it wasn't.
    I was finally diagnosed with multiple conditions and even now i am having doubts about my diagnosis. I have fibromyalgia , osteoarthritis , degeneration of the spine, plantis fascias and now hyper mobility.
    what is the to be happy about? depressing maybe but hey that's life and we have to deal with it. I have read a lot on the internet about my conditions, and even tho they say exercise helps it doesnt it just makes me feel more fatigued and more in pain.
    To put into consideration that i was an active female before all of this happened, yes i worked at a health club, so the pros cant say i wasn't active, i spent at least 3-4 months on my sofa not able to move due to the fatigue and pain.
    I have tried a lot of things and nothing helps at all not with the pain and not with anything else either.
    I have been trying to find a way to help myself a way to help cure myself but it cant be done , not by me anyway. I am not depressed and done have a negative outlook either.
    It happens and im just one of many that has to deal with having this problem. To look on the bright side Im still alive, still here and still breathing.
  • AMEN! I was diagnosed years ago by the hospital, I used to work in! Over 10 years ago!

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