I have frequent headaches and widespread pain. While pain varies in intensity, it never completely goes away. I have days where I literally cannot get up or move. But I also have days where I can do everything I need to without much complaint. The vast majority of my days are somewhere in the middle. My pain has been in every joint and every muscle.
The things that bother me the most are my: neck, jaw, shoulders, elbows, arms, hands/wrists, low back, hips, knees, ankles and feet.
I also have restless leg syndrome, irritable bowel syndrome, insomnia, poly cystic ovarian syndrome, tendonitis in both ankles, migrains and arthritis in several joints.
I also struggle with anxiety and depression. Some would blame my pains on that itself. But I believe my anxiety and depression are caused by my pain. I’ve been in constant pain (of varying levels) for over 20 years. Wouldn’t you be pretty upset about it too?
I rarely get quality sleep. On a good night I might get 4-5 hours of extremely restless and interrupted sleep. I usually wake up every 30-60 minutes or so. On a bad night I can literally just not ever fall asleep. It’s not uncommon for me to be awake for 24-48 hour stretches.
I also have experienced what is reffered to as “fibro fog.” My mental symptoms include: confusion, forgetfulness, stumbling over my words, stuttering and slurred speach. These symptoms worsen the more pain I’m in and the more tired I am. I also have dizzy spells and struggle with balance.
I’ve tried many medications in the past for various aspects of this illness with no real betterment. In many ways, medication made things worse. I manage my symptoms with diet, movement, essential oils, herbs, heat/ice, baths and natural remedies. These things can help take the edge off and get me through the day. When those things have no effect, I take asprin, excedrin, ibuprofen or something similar to take the edge off. If I’m being completely honest, at one point I tried managing my pain with canabis. The results were inconsistant.
My arthritis is sensitive to humidity. Rain, humid days (hot or cold), sleet/snow…all make my pain worse. Restless leg syndrome mostly affects my ability to sleep and is just plain annoying. The PCOS causes cysts on my ovaries that give me unexpected sharp, shooting pains in my low abdomin. The IBS is extremely embarrassing and inconvenient. I have almost no ability to hold in my bowels. Meaning, if I have to go, I have to go NOW! I have had “accidents” and it’s very common for me to make pit stops while driving or plan my life around bathrooms. The tendonitis in my ankles makes putting weight on my ankles almost unbearable at times.
Frequently, my pain is also accompanied by a general feeling of “nerve overload.” When this happens, the feeling of the shirt on my back, my kids hugging me or an animal rubbing up against me can put me over the edge. As if all this weren’t enough, I frequently get migraines. I’ve had ringing in my ears, “stars” in my vision, extreme sensitivity to light and sound, nausea, vomiting, etc.
It took about 10 years, 7 different doctors, multiple specialists, dozens of medications and accusations of drug addictions, mental illness and "making things up, " before I finally found a doctor who believed me and gave me this diagnosis. I’ve lost friends, been made fun of by family and coworkers and been called a liar more times than I can count.
My pain and other “issues” have kept me from going places and doing things that I would have wanted to do. It also makes doing things that I have to do extremely uncomfortable. When I do have to change/cancel plans or just sit down when I should be doing something more productive, my internal dialog can be extremely demeaning.
I’ve spent countless hours of my life giving myself pep-talks, “pulling it together,” crying and getting extremely angry, all in the privacy of my solitude. On a daily basis, I put on a smile and answer the question “How are you?” with a “good, you?” Every minute of every day I fight an invisible, silent, untestable nightmare. I pull more than my fair end of the deal at work, home and in my personal life, mostly with a smile. Many would argue that if I can function enough to work and keep my house together, then there’s nothing “wrong” with me. Truthfully, I keep it together because I have to, not because it physically feels doable. I put on a smile for my kids and my man and my friends and co-workers and total strangers, not because I feel good and everything is “fine,” but because there really aren’t any other options. What I suffer through isn’t considered a disability, therefore not working isn’t an option in my household. Nobody else will be here to raise my kids and keep the house clean, so I do.
On the outside, I might look like I have no problems, but internally, I’m chalk full of them. It takes a lot of mental will power to push through each and every day as if I have slept in the last 2 days, or like I have been able to stay out of the bathroom half the day. Doing my job causes me great pain, but none of my clients would know it. When I can’t think of words to say or things don’t come out right, I blame it on “a case of the (insert day of the week here).” If I just got done crying, I blame it on allergies.
By the end of the work day, I’m ready to completely collapse, but I can’t. I get my kids, get home, occasionally stop at a store, let the dogs out, feed them, help with homework, cook dinner, clean up the house, get kids ready for bed, etc, etc. Typically by the time I get in bed, it is a giant task coupled with moaning and groaning. Usually, only to not really sleep, then get up and do it over again.
It’s getting harder and harder to fake it guys 
My goodness, Tmama, you have a lot to deal with. And day after painful day. Many of us with chronic painful conditions know what a struggle it is to make it through our days in that condition. And like you, we have found Ben’s Friends a good place to unload, let off steam, vent and rant.