Raynaud’s– (Raynaud’s disease is a vascular disorder that causes intermittent interruption of blood flow to the extremities. The affected body part may turn white or blue and feel cold and numb until circulation improves.) In March of 2008 my daughter Allie and I planned a cruise to the Bahamas during her spring break. She was going to college to be a nurse. One of our excursion days we planned on snorkeling. Unfortunately, it was unseasonably cold that day. After being in the water for only 10 minutes I noticed my toes and fingers were feeling numb. I was starting to get very alarmed because I had never experienced this before. I had a hard time climbing back on to the boat because I could not feel my fingers and they were quite painful. I looked at them and they were snow white. I showed my daughter and she immediately replied, “mom, you have Raynaud’s!” I had never heard of this. She suggested I go and have a physical right away when I returned home. For the next several months I had so many Raynaud’s’ attacks it was a struggle to go into a grocery store or restaurant with air conditioning. I was having trouble golfing and going out in the weather below 60 degrees. Learning to live with Raynaud’s was a must. I will dedicate a whole post to this in the future. Warning signs, that I now know were all part of the autoimmune puzzle that was being put together. The list I will give you may not be totally in the correct order, but all were part of the pieces of my illness that at the time I did not realize were all signs to my soon to be health struggle.
Sausage fingers– (Dactylitis is swelling of the fingers and toes that can cause them to have a sausage-like appearance. Sometimes called sausage digit, dactylitis can be a symptom of several different medical conditions.) One day while walking down the 3rd fairway carrying my golf clubs, my fingers suddenly swelled up and became painful. This was almost instant. I stopped and showed my friends and we could not believe what was happening. Later that day I had to have 1 of my Dr friends help remove my rings. Later I found out that “sausage fingers and mechanic hands” are very common with my condition. I had to have all my rings resized larger. (5 years later my rings were so loose they had to be resized smaller)
Having trouble holding my urine– one day not realizing I could not make it to the bathroom, again on the golf course, I had to “go” and never having an issue holding it before, I did not make it on time. This was devastating and very embarrassed. This also came on suddenly. It would happen so often I started to panic. I was having an issue traveling with friends, I could not go on long walks without a bathroom nearby. My husband would have to pull over so often it was becoming a big problem. I had no idea what was happening to me. Later my Nurse Practitioner said I needed bio feedback. I now know she thought it was all in my head. It was not in my head; my muscles were weak, and I was not strong enough to hold it.
Trouble swallowing– (Esophageal dysphagia refers to the sensation of food sticking or getting hung up in the base of your throat or in your chest after you’ve started to swallow.) One of the most frightening things that happened next was my difficulty swallowing food. This also came on so quickly. Food would get stuck, and I felt a such panic that I was going to choke. This continued to get worse, and my NP never took it serious. Later on, on my own I discovered this was another common piece of the puzzle.
Trouble walking– In 2011 things were getting worse. I was having trouble keeping up with my friends on the golf course. I was use to walking 18 holes while carrying my golf bag. I was lagging behind, and was not sure what was happening to me. I would try to exercise more feeling maybe I was just out of shape, but I continued to get slower and more out of breath. I was feeling very fatigued and started to feel burning in my muscles.
Losing strength– (The muscles weakness associated with polymyositis involves the muscles closest to the trunk, such as those in your hips, thighs, shoulders, upper arms and neck. The weakness affects both the left and right sides of your body and tends to gradually worsen.) I was a very strong woman physically. I could hit a golf ball off the tee 200 yards. Suddenly my distance was changing and changing fast. It was very concerning to now only be able to hit the ball just over 100 yards. What was happening to me? I also started to have trouble climbing the stairs, especially carrying a laundry basket. I could not pick up a gallon of milk. I had trouble taking my shirts off over my head and washing my hair in the shower. I even fell a few times. It seems my legs did not move when my brain wanted them to. It was usually when I wanted to move quickly. I was having difficulty standing up from a chair. I could not pull myself up from the floor or get up from doing a squat. In time I needed help getting out of the bathtub. I had to lift my legs with my arms to get in and out of a car. I was so worn out by 5:00 in the afternoon I usually had to sit in my chair and worry about cleaning up the dinner dishes until the next morning.
This all was happening, and therefore I started researching what in the world could be wrong with me while my Nurse Practitioner was telling me nothing was wrong and to trust her and stop searching the internet. My advice to you is to listen to your body. For over 5 years I knew something was not right, and my NP would not listen to my concerns. My husband and daughter also were researching and Allie being a nurse, was an awesome resource. We all concluded that I had polymyositis with possible overlapping Lupus or Scleroderma. Of course, my NP disagreed and refused to do the proper testing. Later pain and weakness took over my days, so much I was no longer able to travel alone. Thank God for family and friends. More on this story in future posts. Also, there is hope! You will eventually learn about my healing journey.