What condition(s) do you have that have led you to living with chronic pain?
I have Fibromyalgia and Chronic Fatigue Syndrome, with some Osteoarthritis in my hands and various other joints. My list of symptoms include: Insomnia, fatigue, pain at being touched, joint pain, lower back pain, muscle cramps, unidentified belly pain, migraines, memory problems, and a host of others.
How long have you been living with this condition(s)?
I was diagnosed with Fibro about 2 1/2 years ago, but have struggled with the joint pain and fatigue since 2008 after two work related back injuries. I struggled with insomnia, migraines, memory problems, anxiety, and belly pains since I was a child.
What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it that no one is saying about life with chronic pain? )
One thing that I have learned is that I am not like other “normal” people, and nothing I have tried has made me that way. I have had to accept that I will never be, instead of grieving and raging at the unfairness I try to live each day as a victory.
Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?
I adapt to living with it, because waiting and wishing only wastes my energy and time. I treat each day, every moment as a step up a mountain. I focus on each step forward, regardless of how small, as a triumph or a success. If I have to rest more, or sleep more during the day, I try to envisioning a pep-talk to get me going again, reminding myself that I can do it, the pain isn’t at its worst, that I am stronger than my pain.
What do you miss the most that you feel you gave up/lost as a result of chronic pain?
I miss sleeping deeply, but it happens so rarely that feeling refreshed in the morning is a distant memory. I miss hiking, I live in a more rural, small town setting, but I lack the energy to explore the depths of my neighborhood, let alone the miles of paths, streams, parks, or other secrets that the land holds. When I was a teenager I could walk 2 miles to work and back every day, but now I struggle to walk the country road nearby. I miss not feeling pain when I get hugs, and flinching away from my kids when they touch me. I hate that most of all.
What do you do now to fill that void?
I nap when I can, and take small amounts of meds to help me sleep. I try to get time outside every day, even if it is only walking to our back yard and greeting our plants. I walk to pick up the mail, and on good days I take my girls out for playtime in the yard while I enjoy the fresh air.
What words of encouragement (or on the contrary what negative comments) have you heard from others that made you keep going despite the pain?
My husband is a wellspring of support during all of this. He reminds me that I am stronger than this illness, and that he loves me no matter what. He also does his best to avoid placing expectations on me of what I need to do each day, and lets me set the pace for myself. Just a gentle touch or a kiss is all he needs to give me to help bolster my strength at a difficult moment, and I am so grateful he is with me through all of this. My recent trip to set up a counselor jolted me when the clinician told me that after everything I had been through, I had every right to curl up and cry for the rest of my life. Someone telling me that made me see that even after suffering so much, I wanted to keep going, I refuse to give up.
Do you feel that people view/treat you differently? Yes
How so? For the most part, people outside my husband and children treat me as is nothing is wrong with me. Their expectations of me are huge, and any needs on my part seem to inconvenience them, or irritate their tolerance of my presence. I had a case manager who said I was making the choice to lay in bed all the time, she had Fibro too, and was able to function just fine with 2 kids and a demanding job. I just had to make myself get up and go, and I would be fine. She didn’t believe me that her advice wouldn’t work, at best it would cause more aches, at worst I would overdo it and end up in such pain I would end up in the ER.
What coping mechanisms have you tried that worked for you? I try meditating, especially in a hot shower, and do stretches while the hot water runs over my back. I also use different topical creams and ointments that offer some limited relief (muscle rub/icy hot, old goat’s cream, etc.), I also try to use some ibuprofen and tylenol pm to help with pain as well.
Which ones did not work for you? (Traditional and Non-traditional) Yoga is one that I cannot do without causing more pain and stiffness. I have tried warming up my muscles by doing gentle yoga or pilates, but unless it is in the shower, it only makes it worse. I have tried using Trazadone and Gabapentin for pain as well, but had to stop taking it when I became pregnant with my 3rd child, I am currently not on any meds aside from OTC anti-inflammatory or analgesics, but I hope to change that soon. Massage or PT might help, but the previous therapist did some form of “skin rolling” on my back that left me wracked with so much pain I couldn’t walk for days afterwards. I have a distrust of PT now because of it.