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First Name: Sharon
Male or Female? Female
When were you diagnosed ? April 2008
How long did it take to get a diagnosis ? Six years of testing with the doctors stumped, had to see a ‘fill in doctor’ who was helping at out clinic. He was the one who told me that by looking at my records and my exam he was 99% sure I had fibromyalgia, but sent me to the specialist to make sure. The rheumatologist said I have ‘severe fibromyalgis,,,17/18 points showed up.
Your age at the onset of symptoms, apox? 42 years old.
What were your first symptoms? Swelling of feet and hands, achy feeling I could not shake, and exhaustion.
What are your current symptoms? Can’t sleep, pain all over, knots in my feet make it hard to walk, allergy to the medications that are ‘approved’ for fibromyalgia. Memory loss; very blurry vision that gets worse every four to eight weeks; (my glasses prescription changes). Sinus dryness that sprays do not help; extreme dry mouth; Irritable bowel; urinary incontinence; depressed due to unrelenting pain. If I ride or drive more then 20 miles or so I flare for 2-3 days afterwards.
Other clinically diagnosed conditions ? IBS; RLS; GERD; Migraines; Tinnitus; Sensitive to light, sound and smell; blurry vision; Hypothyroidism; Insomnia; Urinary incontinence; depression; eczema; Osteoarthritis; high cholesterol scoliosis and weight gain.
Are you still working? No had to stop working December of 2010
What line of work? Convenience store clerk
Are you disabled from Fibromyalgia? Yes
Have you filed for disability? Yes
What results from the filing ? Denied, I am on my final appeal.
Any prior injuries or trauma? Fell off a ladder in 2004 and was unconscious; concussion and a few small broken bones (My little toe, small fracture of right hip, small “hairline” fracture on the back of my skull), Several car accidents while riding with others, (All minor, no major injuries, whiplash, bruised shoulder, etc,); hyper extended my right knee when my dog walked behind me and then came back on the opposite side of where the leash was.
Major illnesses ? Pneumonia four times, (three times I had 30% or less, chance of surviving. The last severe bout had me in the hospital for 32 days. They told my Mom they were “waiting to wheel her out to the morgue, because the chances of her living are very slim”.
Does exercise help? and if so, what kind ? Exercise does not help; I do light stretches every day, just to ‘flex’ my joints. It eases the arthritis in my knees, ankles, and my lower spine.
Have you ever have a long lasting virus? no
How has FM affected your life? I can no longer do the things I used to love doing. I use to go square dancing 2-3 nights a week, but I have not been able to since 2008. I have to reserve my energy if I am going to be able to cook supper. Some days I hurt so bad I can’t even shower or get dressed by myself. I don’t get out much, to socialize, by the time my friends are off work, I am exhausted from what little I get done around the house. I can’t ride or drive more than 20 miles without it setting off a two to three day flare.
What makes symptoms worse? Riding in a vehicle, grocery shopping with my husband. Anything where I am on my feet much or if I have to sit for very long at a time. Certain strong odors like cologne or perfume set off a flare of my symptoms.
What makes you feel better? A hot shower or bath, a massage (too bad I can’t afford a monthly massage. It gave me about 75% relief for about 2 weeks and then the pain slowly came back.)
Been admitted to a hospital for pain? Not yet, but some days it is tempting to go to the ER, because of the intensity of the pain.
What remedies or medications have you tried? Lyrica, (tongue and face swelled) Cymbalta and Savella (both elevated blood pressure to dangerous levels ie: 286/163) flexeril for the spasms, gabapentin for the nerve pain, tramadol (stopped working at all after 3 years.)
What results did the remedies have? With the Gabapentin, and flexeril, I get about 25-30% pain relief. Except when I am in a flare and then it does not seem to help at all. All of the others I had to stop taking.
Comments: It is depressing to be in constant pain. It drives me crazy that I can no longer just ‘do’ what I used to take for granted. If I wanted to go somewhere I got in the vehicle and went. Now with my vision going blurry all the time, and the pain it puts me in, it isn’t safe for me to drive. I can’t push the vacuum, or stretch to reach something in the cabinet without it causing pain and muscle spasms. It is like having the flu24/7/365! And that is on a “good” day! There have been days the pain was so intense that I have prayed for death, just to make the pain stop.
I cannot take steroids; they cause me to feel like I am bruised all over. Literally from the top of my head to the soles of my feet. That is another reason they have trouble finding something that works on me to relieve the pain. I have trouble walking now, my right leg will just give out and I fall. Feel dizzy a lot and seem unbalanced. The frequency of my migraines has gone from having four to six a year, to having one almost every week. My hands are in constant pain from the osteoarthritis. It has taken me over two hours to answer these questions, because I can’t sit for long, and I would have to get up and walk around a little.
You have my permission to use the contents of my questionnaire any way you think is appropriate. Thank you for making the website. It has wonderful information, and is very user friendly! You are a miracle worker. Most sites that deal with Fibromyalgia are so hard to get good information from. I had never even heard of fibro when I was first diagnosed. But the past 8 years I have been doing a lot of research. ~gentle hugs~ Hope you are having a low pain week!