This is the second installment of Fibro Warrior Wednesday, where I interview others who have been diagnosed with Fibro. Vicky J is another friend of mine from my local support group. She’s been dealing with Fibro for most of her life, and handles it beautifully. Let me just say that Vicky is one of those people that always has a smile for others, no matter how she may be feeling.
When were you diagnosed?
I’ve been having symptoms since childhood, but wasn’t diagnosed until I was 33-34 years old (appx 1991).
What lead up to your diagnosis?
I’d been to doctors as a child. My Mother thought I had polio because I cried with my legs hurting every time I played outdoors. Although I was athletic as a youth, my peers could always keep going when I ran out of energy.
I always knew something was wrong with me, but didn’t know what. My family doctor told my Mother that my leg pains were growing pains. As an adult, it was the same as my childhood, my peers could always keeping going when I couldn’t. I finally decided I just had a weaker constitution. However, in my 20’s, I began having spells of shortness of breath, extreme fatigue, etc. The doctors ran tests but could never pin point anything to diagnose me with. Finally I began having stiffness and pain along with the weakness (which I had dubbed “this incredible weakness”).
In my 30’s, I began asking my family doctor to check me for arthritis because I couldn’t sit or stand for long periods without feeling like I was 90 years old –pain and stiffness galore!!! My family doc checked me and ran lab & finally sent me to Dr. Macon Phillips (Rheumatology). At the first appt, Dr. Phillips diagnosed me right off the bat. I do not ever remember hearing of fibromyalgia before that day.
What was your family/ work life like at this time?
During the time I was diagnosed, I and my husband, Jimmy, were raising 5 children…The age range at the time from oldest to youngest was, 10, 7, 6, 6, and 4. (the 6’s are twins). 🙂 I wasn’t working outside the home full time, but did hold down part time work and also babysat my niece during summers and would later do some homeschooling of some of our children. One of the jobs I had was working part time in a nursery at Aerobics Unlimited (as a favor to my niece who taught aerobics). I worked there for over a year and finally had to quit due to increasing and recurring and intolerable symptoms. I tried working at Crestwood Medical Center in Medical Records and did okay for months until I had to work lifting heavy boxes of stored records. This threw me into a fibro-flare and it was so bad, I was running into the side of doors as my balance was off and I was literally exhausted. I found I couldn’t manage even part time work and take care of the house and five children.
How did your family initially handle your illness?
Before Jimmy and I married in 1989, I told him that I had something wrong with me. I explained that I could go for sometimes weeks to months and cope with life demands but there were times that something would happen with my health and I wouldn’t be able to function. He listened to me and still wanted to marry me regardless. Jimmy had two children and I had three and we joined forces in Sept. 1989 and have been together since. When we’d vacation, I’d sometimes have to stay in bed one of the days. Jimmy and the kids would find constructive ways to have fun while I rested. Once we were in Florida at a condo and had planned to go to a nice restaurant for dinner. I couldn’t do it and I cried because I didn’t want to disappoint my family. They said it was okay and we ordered pizza and the kids played inside and looked out at the ocean view and watched TV. The next day, I felt much better and we did all the fun things I couldn’t do the night before. It’s always so unpredictable though, I never know how long it will take to get up and get going again. Still, my family loved me and adapted to the pauses in our lives. They knew when I was able, I’d be up and at it and try my best to make up for lost time.
How has your family/ work situation changed since Fibromyalgia entered your life?
Fibromyalgia has robbed me of decades of my life and lessened the quality of my life substantially. I still grieve for the loss and wish that I could do more. I have 4 grandsons that I want to spend time with and some days I don’t feel like walking to the mailbox, much less driving and spending time and then having to come back home and do the things needed to do here. I just don’t seem to have the amount of spoons I need or want and it’s very frustrating and heartbreaking. Not for myself alone, but it’s emotionally painful to feel I let my loved ones down. They are good about it and love me and never blame me so I have to say they are great at supporting me. Still, I would love to feel better so I could be more and do more for the ones I love.
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What do you feel is the most challenging aspect of Fibro?
The most challenging aspect of Fibro in my life is the fatigue followed by the pain, stiffness and Fibro-fog. My body doesn’t refresh itself fully during times of rest and sleep. Some days are worse than others; occasionally I will wake up and feel unusually good. I count my blessings on these days and try to do the things I wasn’t able to do on the bad days. These days I tend to overdo because I try to make up for the missed days. I’m trying to be good though and pace like Dawn (the leader of our local Fibro Support Group) has instructed and encouraged those of us in the group to do.
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Do you have any other co-existing conditions? If so, what are they and how do they impact your Fibromyalgia?
The co-existing conditions I have are Sjogren’s Syndrome and Hypothyroidism, HBP, peripheral Neuropathy and at times doc lists me as having hyperglycemia. It seems the autoimmune factor is working in my body. Before I had any of the added conditions, I had Fibromyalgia and felt awful; now with the added conditions, I have the dry eyes and dry mouth of Sjogren’s which forces me to see eye doc and dentist more often. With HBP, twice I’ve had blood pressure out of control and had to go to ER to get it down. My family doc’s nurse practitioner believes I’m salt sensitive which makes my BP go higher so I have to limit the salt and the sugar because of the HBP and the hyperglycemia. I sometimes feel life is a juggling act to try to tend to this and that illness and sometimes I just try to forget it and forge on with my life as much as possible. It can be very depressing if I allow it to go there. I have to fight depression and hopelessness and I try my best to laugh and to enjoy what quality of life I have to the fullest. It’s a real challenge at times but there’s so much good in life that I just have to remember to seize the day. 🙂
I also have arthritis and Dr. Phillips is watching me for Rheumatoid Arthritis because of my labs. He can see nothing in the physical exam to show RA, but because of the lab work he’s keeping an eye on me. I have had a positive ANA profile several times over the past 3 years or so. I also have carpel tunnel in both wrists and plantar fasciitis in my left foot. Does toenail fungus on left foot count? ha. I have about given up on trying to figure out all that is wrong. I also have Diverticulosis, but so far I haven’t felt any symptoms with it. I only know it because my GI doc told me after a colonoscopy. I’ve suffered with migraines over the years but they seem to be better since menopause began. Oh, that’s another thing… Also, have swollen/inflamed salivary gland on right side which ENT says he can do nothing about because he would suggest steroids, but steroids raise BP so he basically told me I’d have to deal with it….Good grief!!! The more I think about it, the more things I remember that is wrong with me!
What (if anything) have you found/ done that has improved your symptoms?
The things that have improved my symptoms are times of peace in my life where I am not stressed over someone or something; times there are no deadlines, no time pressures, etc., so that there’s more time to relax and heal. Some of the most relaxing things for me are watching a favorite movie or favorite TV program, reading a good book just for enjoyment, or going out to lunch or dinner with my family, or to the park to walk the dogs. I find that when I am feeling well enough to get out, exercise like walking improves my feeling of well being (health and mood).
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What is the best advice you’ve received regarding Fibromyalgia?
The best advice I’ve received regarding Fibromyalgia is “Do it, Delegate it, or Dump it”. The 3 D’s are an easy way to remember that if something is necessary to be done, it doesn’t mean that it’s necessary for me to do it or that it necessarily has to be done right away. For Fibro patients, it’s a reality check for us, as well as, a good formula for coping and pacing.
[Tweet “The best advice I’ve received regarding Fibromyalgia is “Do it, Delegate it, or Dump it””]
What was the worst advice, that you followed?
If the question was for Fibro-patients in general, I’d say it’s the promise of certain medicines helping with Fibromyalgia when, in fact, some medicines make Fibro-patients deathly ill. In other words, Fibromyalgia patients cannot be lumped into one category to say that one particular medicine will help all. As for me personally, I think the worst advice I’ve been given has been by ignorant doctors who thought my symptoms were all in my head. For example, one doctor began questioning what was going on at home (as though some stressor at home was causing my symptoms). Although I cannot remember his exact advice, I know his suggestion/advice was not good. Also, his refusal to validate my illness was very hurtful. When a person is physically sick, the worst thing a doctor can do is to act and speak as though it’s all in the patient’s head.
elephantbev.blogspot.com says
Vicky, we are a lot alike — I too had “growing pains” so bad my dad would massage my legs at night. I too enjoy a good movie to more strenuous frenetic activity. Thanks for sharing your experience — hang in there, fellow fibro sister! Beverly P