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Welcome Readers!

Welcome to my Fibromyalgia Lifeline blog! I am so glad you are here. I thought I would start with telling you about my experience in getting a diagnosis. I was pretty lucky. It took less than six months to get a diagnosis. I have read it takes the average FMS sufferer up to seven years. I can’t imagine!

On the “About” page there is a little bit about me. Please, introduce yourself in the comments below. If you would, I would greatly appreciate you telling me what you want to read about, and what troubles you in having FMS or another chronic pain issue. Whether you have FMS or some other type of chronic pain, it is likely invisible to others, so it has many of the same characteristics and effects on your life. This blog is for you, too.

Here is the story of my diagnosis.

One day in the latter part of 2003, I woke up in horrifying pain that completely consumed my body and mind. I had no clue what to think! I felt that, at just 40 years old, my life was over. Part of me wished, in that moment, that it was. Similar things had happened to me since my 20s, but it was never as severe and debilitating. I was so fatigued that I couldn’t really move even if I weren’t in so much pain, and I had slept so long I missed a day. This was definitely different, and in the past ten and a half years it hasn’t gone away. But, I have learned what my body and mind needs to keep the pain and fatigue from overwhelming me like it did on that day in 2003.

From that day in 2003 to about April 2004, was a series of tests, along with extreme fear, and a cycle of uncertainty and elation. I had no idea what was going on with my body, I knew I wasn’t imagining it, and I knew the purpose of the blood tests. The blood tests were going to tell my doctor if I was going to die or not. All those test results were normal! Okay. So. I wasn’t going to die any time soon from any type of cancer, virus, or any of a host of other diseases. But I still didn’t know what the hell was wrong with me! I also wondered how many times I could get poked with a needle in a few weeks time and not have some kind of ill effect. Apparently, more than I had been poked. One benefit of $15,000 worth of tests, without the benefit of insurance, is that I don’t have to lie down to have blood drawn anymore.

All the while I had this terrible pain to contend with. My primary care doctor was on sabbatical, so I had to see someone else, a doctor who didn’t know me. She would not give me any pain medication because she didn’t know what was wrong with me and she was concerned I would become addicted. Neither of those concerned me! I was taking leftover narcotics from dentists for nearly a month and, while they weren’t helping all that much, they didn’t seem to be making anything worse. The narcotics soon ran out. Then I started drinking. That only helped for the time I was completely inebriated. I found that the next three days weren’t really worth it. The hangovers made me even more miserable, since hangovers are worse when you have FMS. Plus, I once got so drunk I did a face plant in the dirt and chipped a tooth. Grrrrr. I was at a complete loss. I was just so desperate for relief I didn’t know what to do.

Eventually, I was referred to a rheumatologist who diagnosed me with Fibromyalgia. Hot damn! I knew what was wrong! He helped me, through trial and error find the right traditional medication. I helped myself, through trial and error find the right diet, exercise, and alternative methods to help me the rest of the way. In the future, I will talk about the things I do, the things I’ve tried, and the things I believe to be helpful to all of us who suffer from FMS and other chronic pain syndromes (as long as they are okay with your doctor!!!).

It took several months to get the medical help I needed, and to get well enough to learn what I could do to heal my now completely screwed up body and life. Ten and a half years later I am still learning, but am happy that I feel well enough to live a happy life on my own terms.

Yes, I made some mistakes along the way to my diagnosis. Probably the worst was drinking like a fish because the pain and fear were unbearable. I should have gone to a different doctor to see if I could get some type of pain control. (The rheumatologist told me there was no reason I should have had to suffer like that without medical help.) I had, also, never learned to be an advocate for myself with regard to my healthcare because I never had to before, and I didn’t feel well enough to stick up for myself and ask the right questions. Between not being well and being so independent, I didn’t know how to ask for help from a friend or family member. I had yet to learn that being independent means knowing when to ask for help.

I now have an amazing support system, with my husband, friends, family members, and a great healthcare team. These are the things I want for you, and I will do what I can to help you get them. Please leave comments letting me know how I can help you. I look forward to getting to know you!

Sending you wishes for a bright future!
Julie

About Julie Hodges, RYT

I am a happily-married, 53-year-old woman living in a beautiful place with my husband and our three dogs/babies. I was diagnosed with Fibromyalgia (FMS) in 2004. While FMS affects every moment of my life, I have learned to live with it and be happy, not allowing it to destroy me. While I have FMS, it does NOT have ME! As a yoga and meditation teacher, and as a Reiki Master/Teacher, it is my passion to help people have a good, strong and healthy life and relationships. Fibromyalgia Lifeline will help me serve that passion. It is an honor to lead by example, as well as to continue to be a student on this path to freedom from the hold of FMS. Other than that, I like to knit, read, write, be outside, play with my dogs, be with family and friends, movies, some TV shows, ghosthunting, go places in our RV, travel, music, and so many other things, but mainly laugh and have a great time.

5 responses »

  1. GEORGE FERIEND

    Julie is my Inspiration!

    JILYS

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  2. Julie, I think it is awesome that you are starting this blog to help others with Fibro and other pain disorders! I do have a couple of questions:
    1) Is there a bloodtest for Fibro, or is a diagnosis of exclusion?
    2) Are you ever pain free?
    3) Do you think it is possible to live with Fibro without pain pills?

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    • Hi Pam,

      Thanks for your words of encouragement! So, in answer to your questions:

      1. Diagnosis: Traditionally, and to some extent there still is, there was a twofold process to diagnosing Fibromyalgia. The first part is exclusion of any other diagnosis. Second, there was a “tender point” exam, where 18 specific points on the body were pressed. If 11 of those points were tender and there was pain in all four quadrants of the body which had existed for more than three months with no other cause, the diagnosis of Fibromyalgia was made. That method of diagnosis is probably still used today. In 2010, the American College of Rheumatology decided on a different basis for diagnosis. The patient is still tested for exclusion of other diagnoses, but there is also a checklist for pain and other symptoms which could indicate Fibromyalgia. (In my experience, the list of symptoms is a little light, but that’s me.) Here is a link discussing the 2010 standards, at the bottom is a link to actually fill in a web form, taking the test yourself. http://www.fmnetnews.com/fibro-basics/diagnosis/new Have a pencil and paper ready. You will be writing down three numbers and will have to know them at the end.

      Different laboratory tests have been discussed, such as using a spinal tap for diagnosis, but the results have not been definitive. There is, however, a blood test in development in the UK that shows promise. If you would like to read about that, here is a link to an article. http://www.arthritisresearchuk.org/news/general-news/2013/july/finger-stick-blood-test-may-aid-fibromyalgia-diagnosis.aspx

      2. No, I am never pain free. With the medication I take, it definitely dials the pain down so I can deal with it, but the pain is constant. It does change from day to day, though. Some days are worse than others.

      I will answer #3 in another comment because I don’t have enough room in this one…

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    • Here is the continuation of my reply, which begins below. LOL I will plan better next time!

      3. For some people, it may be possible to live without some type of pain medication, and for others it may be possible to go for periods of time without medication. I have several reasons for that thought. Mainly, some people have more pain than others, or have a different tolerance. Also, some people are more willing to consistently use other/alternative methods of pain control. There are certain things that make pain better and make it worse. Those things vary from person to person. For me personally, no way, and I have a pretty healthy pain tolerance, and use many alternative methods of pain control. It also depends on what you think of as “pain pills.” Do you mean narcotics? If that is the case, you should know that narcotics are not routinely prescribed for Fibromyalgia, only to manage pain flares in some people. I manage Fibromyalgia with Lyrica (an anti-convulsant so the nerves don’t fire as often), Tramadol (same as Ultram-a non-narcotic analgesic/pain pill) and Zanaflex (a muscle relaxer because when I am in pain I tense up and get muscle spasma-normally taken only before bed, but can be taken during the day if necessary). If I am not in a flare, I have one dosage I use. When I am in a flare, I take a higher dosage of all my meds. I also have the option of taking Tylenol when I need an additional boost of pain medication. I have never, except before diagnosis, taken narcotics for Fibromyalgia. I have met people, though, whose pain is severe enough to take oxycontin (in time-release form so they can function, and which can be used over long periods of time) and methadone (not just for herion rehab-it is a bonafide pain management drug and is very strong). These are people who truly cannot stand up without falling over in severe pain and agony!

      So, you can see the answer is not really cut and dried. There are too many variables, both with the individual’s symptoms and tolerance and with an individual’s definition of “pain pills.”

      I hope I have answered your questions! If there is anything else you want to know, please do ask!

      As an aside, just because, I should say that nothing I say should be considered medical advice and people should always ask their doctors, particularly about medication and other treatment! 🙂

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  3. Writing posts is pain in the ass.I know how you can get unlimited articles for your blog, type in google:
    Anightund’s rewriter

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