The World According to Pat

September Update

2005-09-16T08:43:00.000-04:00

Wanted to let you know that I saw Dr. Meek (Internal Medicine) yesterday. She has added Topamaz (25 mg) to my daily regimen (1 a day for the first week, then 2 a day) for my headaches. She will see me in 6 weeks to see if there is any progress from this.

The World According to Pat

2005-09-16T08:42:00.000-04:00

Summer Days of Fibro

2005-08-23T08:43:00.000-04:00

Hi Everyone,

Have experienced several Fibro Flares this summer, usually from stress or just plain fatigue. These managed to knock me out for a day or two, then I am able to bounce back. I missed seeing my daughter when she was in just because of this. Just knocks me for a loop.

Now I have a sinus infection (went to the dr yesterday) and am taking Amoxicillin (875 mg) twice a day. This just adds to the already present physical condition of my body. Am trying to take it easy but still go out daily and try to get into the water.

I am trying to pick up my water visits again. Seems to take everything out of me when I go. Yet I know this is good for Fibro.

At the YMCA we have what they call St. Joe Wellness Center. This is where they provide classes for members/nonmembers with a charge. These classes are centered around certain disabilities, i.e., Fibro, arthritis, etc. I have talked to them about getting into a class, since I have had to quit doing some of my exercises because of bad shoulders and now my wrists. My PT consultant told me to sleep in wrist splints (the ones with support) to keep my wrists from wiggling around. Though I am trying to do this, they continue to hurt. I can register for this particular class beginning October (12 weeks), so hopefully I will remember to call today to put my name down. They will call me when the class is ready to begin. Am hoping this will hit some of the trigger points that need attention.

I hope my share has touched someone's area of pain. Although I intended to post more than I have, sometimes my days have other intentions!

Medical Update

2005-07-13T09:27:00.000-04:00

Went to Dr. Egan (Rheumotologist) yesterday. She was concerned about my wrist and the pain I have been having the last month. Suggested I let PT know this week and wear wrist wraps at night to keep wrist straight while sleeping. Am going for a massage today and am ready for it. My whole body is hurting. Hopefully I will be able to swim afterwards. Since the water in the pool is cooler, I find that my body reacts negatively to it. Will continue to go to the YMCA and Cardinal Hill Hospital.

Fibro Update

2005-06-28T09:53:00.000-04:00

Hi Everyone,

Went for my "annual" visit with my Internal Med dr recently. We had a 2-hr visit. She asked me if I would like to try Mirapex (used for Parkinson's disease but has been tried on Fibro patients). I agreed to try it. She will get samples for me to try then, if it agrees with me, I can continue to take it. Here is a simplified explanation of Mirapex:

MIRAPEX is a drug that is used to treat the signs and symptoms of Parkinson's disease. In clinical studies, patients recently diagnosed with Parkinson's disease had improvement in their activities of daily living in as early as week 2 of treatment. MIRAPEX can be used alone, or in combination with other therapies, and is effective in treating both early and advanced stages of the disease.

Fibromyalgia

2005-05-16T09:39:00.000-04:00

The last month of 1999 I began experiencing symptoms of what seemed like the flu. I was achy, tired, didn't feel like doing anything. I was trying to work to what seemed like no avail. When I went to my regular doctor, he at first thought I had the flu. Then, after returning to him several times, he finally realized there was something else going on. Since FMS doesn't show up on bloodwork or any "normal" tests, some of the medical force can't "relate" to something "foreign". A woman in Lexington who had Chronic Fatigue Syndrome (very similar symptoms to FMS) contacted me. She really helped me know I wasn't crazy and it wasn't all in my head. She had heard a rheumotologist speak at a seminar and was really impressed. I called this doctor and went for my first visit, discovering that my disease (FMS) was very real. I am still seeing her and continue to refer others to her.

I applied for Social Security Disability, only to be turned down several times. Fortunately, I was a member of an on-line support group who pushed me to appeal each time. Finally about 1 1/2 years ago, I was granted SSD. Thank goodness I have Medicare today. Struggling without insurance all that time can take a financial/physical/mental toll on anyone who is trying to get through each day.

I was encouraged to do water exercises and have done them for the last 3 years or so. This relieves the pain temporarily besides making my body feel better. I also know there is a difference between sleep and rest.

Today I have a "crew" of doctors, but it has taken me 5 years to get to this point. Unfortunately, there are professionals in this world who don't believe CFS/FMS are real diseases. It took going to different ones in order to accomplish my goal--finding a doctor who believed in me.

I hope this has helped those of you who "think you are crazy" just because others won't listen to you.