I first noticed that something was wrong with me, other than just normal fatigue, when one day it hurt to lift my arms and pain radiated from my elbows. For about a year my lower arms and elbows ached really bad. After that, I began to notice burning in both my shoulders and lower back areas. A burning sensation like I had pulled a muscle or injured something in those areas. The year was 1995 and in the area I was living in the doctors I was seeing had no clue what was wrong with me. Tests were run and concluded nothing. I was told to rest more and eat a better diet.
Years later at a doctor’s appointment for what I would later discover on my own was IC (interstitial cystitis), I was asked if I had ever been diagnosed with IBS (irritable bowel syndrome). Yes, I had been in 1986. Back then I think the doctor called both of the things I had complained of–overactive bladder, which would turn out to be IC, and a sluggish? lazy, I think? bowel, which would turn out to be IBS.
Fast forward to 2004 when symptoms of my fibromyalgia were in full swing. I suffered from burning pain in shoulders, buttocks, and hips, burning hot feet, sore elbows, upper back and neck, brain fog, fatigue so bad I could have fallen asleep standing up, and an all-around feeling of depression, and loss of appetite & ambition.
Some of this I attributed to the fact I had just quit smoking. But the level of pain I was experiencing was not from my not smoking anymore. At this point, I was also dealing with issues from IC, and some hormonal issues like hot flashes. So off to the doctors I went to see what was going on. After three blood draws I was escorted into a room to wait. When my physician arrived he concluded I did not have a UTI, and the one test he had done for hormones did not conclude any hormonal fluctuations. His feeling was that I go see a urologist. So I did. The urologist asked me a couple of questions–same ones the doctor did and informed me that what was wrong with me would go away on its own. I asked him what was wrong with me? He stated–“you have what we call little ulcers on your bladder wall, sometimes things like this happen, they will go away on their own.” Once home, of course, I went straight to my computer and googled ulcers on bladder wall and found out what I had was called IC, and I promptly joined a community of fellow sufferers at https://www.ic-network.com/
Had it not been for this network I wouldn’t have known what I had wrong with me, how to cope with it, or what things I could do that would help me live a normal life again.
I’ve probably had fibromyalgia since I was a teenager. Though there is no concrete reason as to why people get fibro, some think it may be due to an undiagnosed infection, injury, PTSD, traumatic childhood, and genes. All of which I am predisposed to or have suffered from for as long as I can remember. My nature is that of a worry wart. I hide my anxiety well, most would never believe I am a nervous person. I have always had what I call dark moods–dark days. I have suffered from PTSD for most of my life–learning this just recently, and had two undiagnosed infections (Strep, UTI) both when I was in my early twenties, and my first back injury at 18.
Add to that I started smoking at an early age, had a poor diet up until my forties, am a recovering alcoholic, and worked in healthcare twenty years. I’d also experienced two ectopic pregnancies, two premature births (24, 26 weeks) and a stillborn baby when I was between the ages of 18-24.
Now, in my fifties, I have suffered well over 25 years with fibromyalgia and have also been diagnosed with myofascial pain syndrome (pain from knots in muscle), arthritis in my back, and feet, and PTSD.
When I was in my forties I began a lifestyle change. First I quit smoking. Second I decided to eliminate all chemicals from my life. I started by–
- Changing my diet to a more whole food, organic, diet.
- Eliminating all chemicals, sprays, cleaners, lotions, deodorant’s, detergents, and make-up.
- I stopped using store bought feminine hygiene products and invested in mama pads.
- I started drinking water vs. pop, tea, coffee or alcohol.
- I started to be more active–daily walks, bike rides, hiking, and pelvic floor exercises along with daily stretches.
- I started taking naps and sleeping a minimum of eight hours a night.
- I did everything in my power to eliminate all unnecessary stress from my life-priorities.
- My health and my quality of life became an important priority in my life and my husband’s life.
I’ve lived in the same area for almost 22 years and dealt with, due to our insurance through work, the same inept doctors this entire period of time. For the most part, I have found that fibromyalgia is still not taken seriously by many doctors. The push seems to be to give the patient a ton of anti-depressants, and or, pain-relievers and bid them farewell. I’ve found that by my doing the aforementioned list of things my mood is better, thus I am more able to perform my household duties, and work. A healthy mind helps one to have a healthier body is my mantra. I have many days that my fatigue is nearly overwhelming, and my pain keeps me grounded in my chair a bit longer than I’d like. But somehow and someway I pull through it, and I am 100% certain it is because I changed my lifestyle so drastically almost 14 years ago. Everyone has a different story, experience, threshold, and life to live so my experience may not be yours. I definitely believe in removing chemicals from your life. I am a firm believer that if you smoke and drink and suffer from fibro that you are only making things worse–seek out a health provider and look at all your options for quitting. If there were three things I have done that have made a difference for me living with fibromyalgia I would say they are–
- Adequate Rest
- Balanced diet- whole foods vs. processed foods
- Less Stress- you’re always going to have stressful things in your life. Prioritize those things that are stressing you and work on one thing at a time. For the things you cannot control or change–let them go.
I’ve also found the Facebook group –Fibro Colors Fibromyalgia Awareness (@FibroColors) to be of great comfort to me, and also extremely informative.
I hope the new year brings you peace and good health!