I woke up this morning like I wake up pretty much every morning – feeling as if a truck had run me over. My lower back, neck and shoulders were in agony, my muscles were stiff and I had a hammering headache. I reached into my nightstand, grabbed my Cymbalta, took it and then schlepped out of bed; hunched over and walking like an old woman. I turned on the shower, started brushing my teeth and felt my elbow scream in agony at the light pressure I used to guide my toothbrush. I stepped in the shower and waited for the warm water to bring some kind of relief. Alas, all that happened was that my joints and muscles became fluid enough to move. I knew right then, today would be another one of those days where I needed to take some Advil to make the pain bearable enough to get to work. This is my life and this is what it feels like to have Fibromyalgia.
I was first diagnosed with FM back in 1994. I had been in the US for a mere year and a half. German doctors had treated my ongoing issues of muscle spasms, severe back pain, migraines, swelling joints, gastritis and hypersensitivity to light and other environmental influences with shots of muscle relaxers into my back, or shots of vitamin B. The visit with a rheumatologist over here was the first one I ever had. When he gave me his diagnosis, I didn’t even know how to pronounce the word; I felt he was full of it and had made up some kind of condition; you know, the kind they diagnose you with when they have no other explanation. The anti-depressants he prescribed I poured down the drain.
I went on to live my life and the symptoms would sometimes get better, sometimes worse. I had started to do martial arts and did a very heavy work out regime. But I injured myself, as seemed customary for me. I would bruise quickly and my bruises would take weeks to heal. I had lived with pain for so long that my pain tolerance had increased as well. Or maybe it didn’t increase, maybeI had just become great in ignoring it and working around it. This resulted in realizing that my left shoulder, which had become “frozen” and no longer worked at all, needed a MRI. I had tried at least 2 years of chiropractic, which, besides costing me thousands of dollars, hadn’t done a thing. Turns out, I had a torn rotator cuff and calcium build up around my bones. At 37 I had athroscopic shoulder surgery, which fixed this issue, but the “other stuff” remained.
But I am getting ahead of myself. By the time I reached my late 20s and early 30s I had additional, new “issues.” At this point I had forgotten about the FM diagnosis. I started having dizzy spells, tingling and numbness in my legs and itchy and burning skin. I also would lose my balance quite frequently. I was promptly tested for MS, which I didn’t have. Over the years, I had test after test after test, namely each time I would finally make it a point again to go to a doctor to have my various symptoms examined. I was tested for various cancers, Lupus, MS, lime disease, viral infections, adrenal fatigue and heart disease. I had blood tests, allergy tests, sleep tests, cardiovascular tests like stress and non-stress EKGs and was diagnosed with asthma. Who diagnosed me again with FM? My pulmonary disease doctor! He was the first one who looked at all of it and figured that these were all common symptoms for FM. He decided to do a trial with Cymbalta and within a week, I was almost pain free. The suffering was better, for the first time in a long time. In addition, I got a second opinion from “Best Doctors,” a service one of my companies offered, another year later. My entire medical history of almost 10 years was gathered, including all the tests and various diagnoses and a leading rheumatologist in the US confirmed the diagnosis. That was 2 years ago.
I have spent a lot of time within the past years on researching Fibromyalgia, its causes, treatments and management. I’ve changed my diet many times and found nothing made a difference. I am not allergic or sensitive to gluten, dairy or other foods. I do, however, find that increased sugar intake makes my symptoms worse. I’ve tried an all veggie and juicing diet, which had no effect on my FM. I’ve tried personal training. It was suggested that fitness would make a huge difference, but that was by people who didn’t know that my body is literally wired wrong and reacts the opposite of a normal body. Here is an excerpt from a study:
Pain levels started out much higher in the group of fibromyalgia patients (as expected). In addition, the spinal cord did not kick in to relieve post-exercise soreness in the shoulders. Worse yet, pain sensitivity increased significantly in the leg muscles that were relaxed throughout the study.
What does this mean? The system in the spinal cord that people rely upon to ease post-exercise discomfort seems to be responding to workouts by increasing the pain in fibro. So, if you are a fibro patient on your feet all day long, your activity can cause sore leg muscles and also make other muscles hurt, such as those in your arms.
Increasing physical function has to be done extraordinarily slow in fibromyalgia patients just to keep the pain levels stable. As your muscles get bigger and stronger, your body will be able to sustain more activity before the spinal cord decides to amplify your pain.
I didn’t know these things and the strenuous workouts with personal trainers that I subjected myself to for a couple of years made things worse. I never reached a point of feeling good. While my muscles got stronger, I only experienced severe vs. mild pain now. Once I turned 40, things got worse yet again. Workouts were so painful that I would sooner or later succumb and give up. I had tried any diet, any exercise program out there and nothing helped. Quite on the contrary, they seemed to make my symptoms worse. In addition, my eyes started going bad, which I first attributed to aging. They were so dry that they would burn and hurt. My optomaligist simply told me to get acupuncture, which I did. Another few thousand dollars for training and acupuncture, as well as different contact lenses didn’t do the trick either. I had no idea that the eye problems, as well as my supposed asthma are also part of FM!
So what did help? Well, after 3 years, Cymbalta is no longer working. I doubled my dose about 6 months ago and it’s not helping. Yoga on the other hand, DOES help a lot. However, the hard workout yoga, like heavy vinyasa flows cause pain. Handstands are impossible, but headstands work. Balance is still a bit of an issue, but yoga has strengthened my muscles and makes balancing easier. I struggle with weight gain – always – and I can’t do the exercises I’d need to do. Diets have no or minimal effect, including the extreme ones I did. I love hiking, because I love nature, but the max I can do right now are 3 or 4 miles, before my legs are in agony and my feet are on fire. I pay the price for at least 2 days after, but it is something I have to endure, so I can strengthen my muscles enough to lower my pain sensitivity.
I refer to FM as the devil disease. There is no cure, there are only ways to manage it and sometimes make it less of a hinderance to a normal life. I am always in pain; there isn’t a day when I am not. Mostly, it’s bearable, sometimes it is not and I’ll just take Advil throughout the day. The narcotics are not an option, as they are addictive and would render me useless. I have a hard time concentrating or remembering, which is known as “fibro-fog.” My eyes get so dry, my contacts fall out; my vision is blurry and my eyes burn a lot. I have a hard time seeing. My chest muscles get so tight, it feels as if I cannot breathe. Especially when I am stressed or do anything strenuous. I start coughing and gasp for air. My skin on my legs sometimes itches so bad that I scratch it raw; or it burns and then I put on cooling booties I have in the freezer. Migraines are my constant companion. My jaw is tight and I grind my teeth. My neck goes stiff and I can’t turn my head anymore. Sometimes, part of my leg goes completely numb. My elbows always hurt, especially when I wash my face or attempt to do vinyasa flows. So do my wrists. I struggle with acid reflux and irritable bowel syndrome, which I control with diet. I am tired and exhausted – A LOT. Without sleeping pills, which I have been on for the past 4 years, I would get no sleep at all. Luckily, I live in a warm climate, which makes things a little easier and being hyper sensitive to many things like light, smell, sound and substances, have kept me away from alcohol and drugs.
I have another rheumatologist appointment at the end of the month. I hope there are new drugs out there that take care of the pain better and don’t have a lot of the horrible side effects. I guess I’ll have to wait and see.
