Fibro Warrior Wednesday – Beverly P

This is the first in the Fibro Warrior series; I will be sharing the story of a different Fibro Warrior each week. We each have our own unique journey through life, and sharing our stories can help us all. This first Fibromyalgia interview is with a good friend of mine, Beverly P.

Beverly P is a local Fibro Friend of mine that I met through an event our local Fibromyalgia Support Group sponsored for Fibromyalgia Awareness. She was diagnosed with Fibromyalgia in 1992.

What lead up to your diagnosis (symptoms, dr visits, etc)?
I contracted chicken pox at age 28 followed by mononucleosis a year or so later. Unlike most people with mono I did not sleep; in fact sleep decreased in quantity and quality. Also had a lot of weird pain in weird places. Doctor had me keep a calendar for a month or so of all my symptoms; based on that and continuing widespread pain, he diagnosed fibromyalgia.

Where you working at the time?
Yes at the Department of Human Services in Texas as a caseworker for Foodstamps/AFDC/Medicaid programs; we were each told that most caseworkers last about eight years. That proved to be correct for me.

What was your family life like (married? kids? etc?)
I was single, with no kids and lived alone. My Mother was in the same town, but I had a minimal support system.

How did your family initially handle your illness?
My Mother was supportive, but smothering. My friends didn’t understand and work certainly didn’t.

How has your family/ work situation changed since Fibromyalgia entered your life?
I got married in 1997 to a wonderful and supportive man who’s stayed with me in spite of fibro and how it has affected us. I worked four more years full-time then transitioned to part-time as a biology tutor for a small community college. We moved from Texas to Alabama in 2007; the plan at that time was to settle for a bit then I would try to find part-time work as a tutor, like in Texas. However, eight months later, we moved my mother (I’m an only child) nearby and her health quickly deteriorated. I became a full-time caregiver at that time. Needless to say, fibro went through the roof and we really never recovered. My mother passed away in January of 2012. Then in July of 2013, we lost my mother-in-law. I applied for and received disability while my mother was alive. I went from being able to work, cook and clean my own home to having to have a housecleaner, barely able to think about food each day, and barely keeping up with essentials like laundry each week. Each day is too short and too long at the same time. One thing that does keep my going is my Princess (see pic). Playing with her gives me much joy and takes my mind off my pain. It also gives me a commitment for each day which is important; I’m not one to stay in bed every day for days on end but it does help to have something I have to do, like feeding her.

What do you feel is the most challenging aspect of Fibro?
My quality of life has changed exponentially; each day’s question is “what has to get done today” and “am I going to get to do something fun or will I just do what has to be done”. The loss has been tough; the loss of freedom of time, the loss of ability and some mobility, the loss of dreams, the hard realization that life is permanently changed and not for the better. It’s like giving a child a box, telling him to put all his toys in it, then taking away the box and giving him progressively smaller boxes but telling him all the toys still have to fit — it no longer works. I miss my life and I’m sad for the impact fibro has had on both my life and my husband’s life as well.
[Tweet “”With #Fibro I focus on what HAS to get done today. “”]

Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
Yes! My other conditions include: irritable bowel syndrome (only recently diagnosed); central sensitivity in all respects — I cut tags out of my clothing; I can’t listen to music a lot; I can’t be in the sun too long; I can’t be around screaming high-pitched children’s voices for very long; hot/cold temperature and humidity sensitivity; plantar fasciitis in both feet; poor sleep/insomnia; widespread pain; morning stiffness; vaginismus; fibro fog and inability to concentrate; thyroid issues; separated S-I joint in my back; arthritis.

My IBS is definitely affected by fibro and stress; when dealing with both my mom’s health issues and my mother-in-law’s sudden passing it flared such that I had to be extremely careful with food. That was difficult, particularly with my mother-in-law’s death since I wasn’t in control of what was available all the time. I reverse-hibernate during summer because of the heat issues; we have spent a lot of money on multiple mattresses trying to find one that would be comfortable for me only to discover that the memory foam is too soft for my husband. My sleep issues have greatly affected him.

Plantar fasciitis has affected my ability to exercise; the pain and stiffness mean that it takes me a very long time to get ready every day. This impacts what I do, where I go, how much my husband and I can travel, and as stress increases, these all increase which further decreases my ability to do anything. I basically have four to six good hours to do things; I get very little done. I chose, after trying all the recommended meds for fibro, not to take any of them while I was a caregiver. I had to be able to function mentally, and the side effects were severely impairing. The S-I joint keeps me up or wakes me up sometimes; it’s becoming increasingly difficult to bend over or lift heavy items. Vaginismus was something we did not know about until after we were married; because of it, we were unable to have children. I almost forgot thefibro fog, which completely messes with my concentration most days. I’m a multi-tasker and very efficient; these days I can’t seem to complete even one task without distraction or forgetfulness.

What (if anything) have you found/ done that has improved your symptoms?
Stress management is key for me. That means not working, for now, at least not punching somebody else’s time clock, and having the freedom to sleep in when needed. Many mornings I go back to sleep after my husband goes to work; some days it’s the only sleep I get. I’m also trying Tai Chi (actually a version called Tai Cheung) and that seems to help with the stiffness when I can do those exercises. I actually take very few meds; I do take a pain medication for arthritis and a sleep medication. I’m also beginning to explore changing my diet; I recently realized the connection between the nightshade family and my pain levels so I’m careful about tomatoes and potatoes in particular. Side effects from the recommended meds like Lyrica, Cymbalta, and Savella were all too much.
[Tweet “Stress management is key for me.”]

What was the worst advice that you followed?
I haven’t really gotten a lot of bad advice because I’m very careful with what I try and who I trust. I have a great FP who actually does better for my fibro than the rheumatologist I’m currently using. It also helps that I was diagnosed very early in the process so I didn’t go to several doctors and get several different diagnoses/meds before fibro was mentioned.

What is the best advice you’ve received regarding Fibromyalgia?
I have several pieces of advice, probably the best being “if it sounds too good to be true or if the cost seems unreasonably high, think twice before trying it”. This was said to me by a previous rheumatologist in Texas; it’s proven to be very good advice. The other advice I follow is that I’ve learned to be my own best advocate. I learned, the hard way, when my mother was so ill, that the medical establishment is not in the patient’s favor and does not always have the patient’s best interest at heart. I do my own research and feel comfortable doing so because of my background in biology; I’ve learned to be comfortable with terminology and medical situations. I’m not afraid to ask questions, to second-guess the doctors. It pays to educate oneself from every standpoint possible. No one else is going to do it for you. Learn about and research the syndrome, the treatments, alternative therapies, nutrition, anything that’s going to be helpful. That has been the most helpful over twenty years of dealing with fibro. I also try to educate people when I can about my condition; many times I find they know someone themselves who has it but they don’t know a lot about it.

Thank You Beverly for sharing your story! Beverly has now started her own blog, be sure to check it out and give her some positive reinforcement to keep it going.

Are you a Fibro Warrior? I’d love to share your story here. If you are willing to share your story, please email me.