First a little background.

Being diagnosed with fibromyalgia was one of the best things that ever happened to me. Don’t get me wrong, it’s not something I’d wish on anyone, but with this diagnosis everything about me suddenly made sense and fell into place.

I’ve literally had symptoms of fibromyalgia since high school. Some days were better than others some were worse. By college I’d get pain so bad it would make me nauseous. It was worse in my hands then because I was a fine arts major and I was constantly using my hands to take notes, paint, draw, and make pottery. There were many times when I had this foreboding sense that something was wrong, but I didn’t know what was wrong. Doctors dismissed the pain. I remember telling a dr. once that I thought I had arthritis only to be told I was too young to have arthritis. I was 25 then.  I suffered much of life with anxiety and depression. I often felt stiff and awkward. I would constantly bump into things and figured it was simply me being clumsy. PMS and menstrual cramps were both brutal for me. I had prolonged headaches for days and sometimes weeks. I either had trouble sleeping or I felt as if I was simply tired all the time regardless of how much sleep I got.

While there is medical documentation that fibromyalgia existed as far back as the 17th century, it wasn’t recognized as a real illness by the American Medical Association until 1987. Prior to 1990 there were no guidelines for treating fibro and many doctors had not heard of it or would not acknowledge it as a real illness. In 1992 the criteria for diagnosing fibromyalgia was expanded and refined. However, patients with this illness would go through an average of fifteen different doctors before they were properly diagnosed. 50% of fibro patients are misdiagnosed and many go years before receiving a correct diagnosis. Even with the new attention this illness has received, there are still many doctors who refuse to believe fibromyalgia is a real illness or they simply have no idea what to do with it or how to treat it. For me it took two decades for me to receive a correct diagnosis.

I was diagnosed with depression and anxiety and treated with SSRI’s off and on. Eventually I developed agoraphobia where I had multiple panic attacks in succession any time I left the house. Eventually I started having panic attacks in my own home as well – in every room in fact except for my bedroom. Luckily it my being stubborn that saved me and I sought a diagnosis to treat the panic attacks that I refused to believe were happening because of “something in my head.”

The medicine for the anxiety and depression – which were actually being caused because the effects of the fibro on my body – led to misdiagnoses. The drugs to treat the anxiety and depression did serve to mask much of the pain, but unfortunately, they also led to side effects of their own that the doctors treated as new or worsening symptoms of depression and anxiety which led to me being misdiagnosed over and over as the drugs stopped working.

When I lost my insurance as a result of my divorce I went off all of the drugs I had been on. Eventually the pain came back and it was worse than ever. I was tested for a number of causes and was also given an ANA ( Antinuclear Antibodies) test. The ANA test is used to help detect and diagnose auto-immune diseases such as lupus. My test was positive which meant testing for everything within that realm basically to see if it was a true positive or a false positive. In the end it was a false positive. I was told I’d always have a false positive test because my brother has lupus. This also means I should be tested on occasion as having a sibling with a lupus puts me at a 50% risk of developing the same disease. I still didn’t have answers. However, I was referred to a rheumatologist who in the end, was the doctor who diagnosed me with fibromyalgia.

I finally had my answers. I finally knew what was wrong with me and why I felt the way I did. Unfortunately I was still going to the free clinic – which incidentally isn’t free as you pay a co-pay based on your income – and was seeing an Nurse Practitioner who had doubts and also no clue how to treat fibro or what it really was.

Soon after I was able to start working full time at my job and acquire health insurance through the company which proved to be my second life saver. Since that point I have grown to be not only self sufficient but mentally healthy. I could see a doctor regularly which has greatly improved my quality of life which in turn has allowed me to do more and work more. I can now also recognize the signs my body gives me and treat them accordingly to stave off the depression and anxiety that used to follow due to my lack of information from feelings and pain I couldn’t explain.

Since being diagnosed with fibromyalgia last June, I have gone without any panic attacks or depression for over a year. And that is why being diagnosed with fibro was the best thing that ever happened to me.

What people say.

Unfortunately with a diagnosis of fibromyalgia there also comes a lot of unsolicited advice. Some is helpful and some is not. And some is just completely cruel. There are instances of messages I’ve received that blame the person with the illness for the illness. These type of comments you have to learn to brush off as simply ignorance. The other advice, you learn to take to eventually take with a grain of salt. One, no one really knows what truly causes fibromyalgia. It’s believed to be caused by the brain receiving the wrong signals whereas we feel pressure as pain. Two, no two people with fibromyalgia have exactly the same symptoms or respond the same to identical treatments. Trying to take everyone’s advice is not only impossible, but it could also leave you more frustrated and in turn lead to unnecessary stress.

What I believe is that when it comes to treating this illness, there is no right or wrong answer to treatment. Each individual person has to do what works best for them and that’s not the same for everyone. What works for me may not work for you.

However, if you do have fibromyalgia you may want to try things that have worked for others as it is possible it may work for you. Therefore, while this is a personal subject for me, I will share my experiences. Regardless, don’t let anyone judge you for your choices.

I highly recommend first figuring out what triggers your worst flare ups. It can be foods, stress, hormones or immobility. For me my worst triggers are stress – which I can control – and hormones – which I am able to control only to an extent. To help curb the debilitating headaches that came prior to and during menstruation, I went on birth control. Specifically I opted for an IUD as I’ve had a child and don’t plan to have more. This has helped immensely with the headaches and some of the worst pain that comes right before I start my period. Mostly it’s kept the headaches to a minimum. Secondly, I learned how to manage the stress. Learning how to manage stress goes a long way. I know I literally feel the pain start in one part of my body then extend all the way to my toes if I get overwhelmed or stressed. Therefore avoiding stress or learning how to not let things bother me have helped a whole lot.

Medication is another option. However, I can no longer take SSRI’s – which are shown to lessen the intensity of the pain – as they literally make me feel like I have constant morning sickness. They also changed my personality and would leave me with an “I don’t care” attitude. So they aren’t for me. I do know people with fibro who choose to not medicate at all. For me this isn’t an option as I could simply not manage as a productive member of society if I chose that route. Instead I choose to limit the medications I’m on. I avoid class c (meaning they are addictive) prescription pain killers as they a) leave me with migraines when they wear off, b) they are addictive and c) it’s been shown they can actually cause worsening pain over time with chronic use. Instead, I take a flexeril (a non-addictive muscle relaxer) in the morning and one in the evening or at bedtime. I take 1-2 tramodol (a non-addictive pain reliever for neurological pain) as needed only when the pain is not tolerable or I find my patience growing overly thin. These don’t make me pain free when I’m suffering from a particularly bad flare up, however, they do make it tolerable.

In addition, to help minimize flare ups, I try to walk every single day. Walking everyday – even on bad days – helps so much. I also choose to keep working. It’s been shown that those who work fair better than those who don’t, and personally I was able to go from working part time to working full time and doing the blog/soap almost full time as well. I take days off when things get really bad, but for the most part I work 70-80 hours a week. I never miss a regular work day unless I’m honest to goodness sick. I do take breaks from blogging and crafting if my body just doesn’t want to cooperate. And that is when I catch up on my favorite movies or tv series on Netflix and Hulu. I’ve really had to learn to listen to my body when it’s telling me to slow down, but the main thing is I don’t stop completely. Because not moving is how I ended up in the ER trying to get a diagnosis because I hurt so bad I was in tears. It can be a delicate balance.

Additionally, a good night’s sleep is a must, so if I have trouble sleeping I will take 2-3 melatonin about an hour before I want to go to sleep.

I’ve also recently started having acupuncture treatments. I’m hoping to find the time and motivation for yoga as well, but that one keeps eluding me. I can say that the two semesters I took yoga and walking (yes, walking, it satisfied a PE requirement) in college were the two semesters that I felt physically my best.

What is acupuncture?

 Acupuncture is a part of traditional Chinese medicine most commonly administered to treat pain. It involves inserting needles into specific points along the body to help balance the flow of energy, also called chi, that is believed to flow through pathways (or meridians) in a person’s body. Acupuncture practitioners believe that inserting these needles along these meridians will re-balance one’s energy flow.

My experience with acupuncture.

I am told that many insurance companies won’t cover acupuncture treatments. I personally don’t know if my insurance company will or not. The clinic I use does not file insurance claims and as my co-pay to see a specialist is $40 per visit, I simply pay out of pocket as it costs me less to do so. I am very lucky to live in an area that offers a community acupuncture clinic. Specifically I go to Roanoke Community Acupuncture which offers both private and community acupuncture sessions. Due to the higher cost of private acupuncture sessions, they also offer community sessions at a reduced cost on a sliding scale between $15-$45 which allows for sessions that are not only more affordable, but also allows for more frequent sessions which are often more beneficial.

I was nervous about my first visit as this was all new to me, however the nerves wore off very quickly. I actually fell asleep during my first session and in subsequent sessions I tend to be able to nap as well. The community room has a number of recliners around the room, all covered in sheets with a pillow and a bucket for each chair. The linens are changed after each session with each individual patient and there is soothing instrumental music that plays during the sessions.

When you enter the room, you simply choose an empty chair, then remove your socks, shoes and belongings and place them in the bucket. A licensed practitioner (you are scheduled with) then comes around and addressed your needs for the day. Generally mine is pain whether in a specific area or all over. She then takes notes and maps out where she will be placing the needles. During the first appointment as well as some of the subsequent appointments, she also checks your tongue and pulse. You then recline and the needles are placed in your body. As this is a community room the needles are primarily placed on extremities. For this reason I like to wear shorts and a short sleeve shirt when I go to avoid having to roll any clothing up. However my last visit I also had needles placed on either side of my upper chest and liniment applied to the top of my shoulders as they were particularly painful that session.

Keeping in mind that I feel pain differently than those without fibromyalgia, the needles – which are new sterilized needles in packaging – occasionally some of the needles hurt going in. This generally subsides within a few seconds. Occasionally a needle will bother a bit past that, in which case I ask to have it repositioned slightly. This generally fixes the issue, however, if you find a needle continues to cause pain, you should definitely ask to have it removed as this is not supposed to be a painful experience. I have personally never had to have a needle removed up to this point and several weeks of twice weekly sessions. Once all the needles are placed I simply lay back and relax with my eyes closed. There are pillows and blankets to make sure you are comfortable.

For some of my pain the acupuncture helps immediately. For other types of pain it succeeds in only dulling it a bit. I’ve had a headache disappear within seconds of having five needles placed in my ear, while other headaches simply did not. However, I always feel better coming out than I did going in and the treatment goes a long way towards also calming me overall and reducing any anxiety and stress I may have going in.

After an hour, the needles are removed – sometimes I feel a twinge of pain on removal but nothing more – and they are disposed of in a Sharps container.

The small, negligent amount of pain on the insertion and removal that I sometimes experience is worth the end effect to me. And I doubt that everyone feels the same discomfort since my pain is amplified. Therefore I am continuing to go twice weekly. If my budget allowed I would probably go three times of week every week, though I am scheduled for three days the first week of September since it coincides with the week before I start my period.

Overall, I find my personal acupuncture treatments calming and comforting. Once in there, I completely forget about everyone else around me. I find that the reduced anxiety and stress I get from a session is just as helpful as the amount of pain it dulls no matter how small. And it’s an hour I feel like I have all to myself with nothing to disturb me. At work I find I have more patience in stressful situations which in turn also leads to fewer painful flare ups since stress is one of my biggest triggers. And on the days it reduces my pain dramatically, well, that’s just icing on the cake.

If you have had acupuncture in the past or you are having acupuncture now, I’d love to hear about your own experiences since everyone has a different experience. However, as this topic is personal – both the acupuncture and the illness – any comments that make judgments or are simply aren’t kind will not be published.