I am 62 years old and have had fibromyalgia for the last 20 years. Fibromyalgia is an autoimmune disease. When I was first diagnosed, I was told it wasn’t lupus and no other information except to see a rheumatologist. That was the beginning of a life I didn’t want. Then it was test after test and so many different medicines that it made my head spin. One day, about 15 years ago, I was out walking on my lunch break in New York and as I was walking, both of my feet started hurting. I mean, they hurt like I was walking on glass. I struggled to get back to my job. I went to see the rheumatologist and my pain was given a name: fibromyalgia. I was somewhat relieved because now maybe I could get a medicine that would help me. I was wrong. I now know that I was having a flareup, which made diagnosing it much easier. It was tired of being a medical experiment. The years went on. Sometimes I could take the 90 minute ride to work, but there were plenty of times that I couldn’t motivate myself to get out of bed. It was a daily struggle. I got married and there were many times we would have to cancel plans because I just couldn’t go. I stopped making plans. It was better to be spontaneous. Fibromyalgia doesn’t just affect you; it takes a toll on each person that is close to you. My spouse is understanding, but I still feel bad because she didn’t sign up for this, being in the house most of the time. It got to the point that I just didn’t have the energy to go commute any longer, so I retired. She retired two years later and we moved to Florida. I thought Florida would be better because the temperature stays constantly hot. I would have a flareup every time the seasons changed in New York, so Florida seemed like a good idea. Wrong move. I forgot about the humidity, so I’m still in the house most of the time. I can’t take the heat. She tells me it’s okay, but I feel even worse now because we are both retired and we can’t do the traveling we wanted to do when we retired. There is no cure for this disease, so the most I can hope for is what I have right now. I take things one day at a time. When I feel good, we get out and just enjoy being out. It’s wonderful.
Fibromyalgia is an autoimmune disease that causes widespread muscle pain and tenderness. There are other symptoms that are also associated with it such as fatigue, low energy, trouble sleeping, headaches, and tingling in your hands and feet. Fibromyalgia usually affects both sides of your body, such as both of your arms or feet. This is one of the ways I know it’s not lupus, which I was diagnosed with later.
Treatment for fibromyalgia once it is diagnosed is hit and miss. There are drugs for the pain, such as hydrocodone. There is medical marijuana, which I now use. The doctors here in Florida try to wean you off of pain medicine, with the marijuana taking the place of dosages of the pain medicine. My problem with medical marijuana is sometimes the marijuana is good and sometimes it seems like I’m just throwing money away. Tai Chi is supposed to help because of the gentle movement on the body. I tried yoga once and was in bed for two weeks from all of the poses that I put my body in. I have tried going to the gym many times and each time I end up in bed with a bad flareup. A flareup is when the disease gets ahold of my body and beats it up. I still try to exercise though, but very slowly and I time myself so I can gradually work myself up to at least 30 minutes of cardio. I prefer exercising at home so I can shower and lay down right after without driving anyplace. The plus about exercising at home is that I don’t have to get dressed, so I can look any way I want.
Relationships are hard. I know how I feel when I can’t do something. It’s very frustrating. But for my spouse I feel worse. We haven’t been to any support groups, but now I feel we should. We both need support to understand the feelings we have when a flareup occurs, which as I’ve gotten older, is more frequent. It’s important that you and your partner sit down and talk about everything about this disease. It takes a lot of understanding and patience. Thankfully, she has shown both. It might not always be this way, but for now, I’m just happy that she loves me and takes up the slack when I can’t do my part. I sometimes get mad and lash out at her for no reason whatsoever except I mad at this disease and she’s here. She’s learned to just let me be and I calm down after a while.
You know how your body feels and never let a doctor tell you it’s nothing. Fibromyalgia is hard to diagnose, and after seeing doctor after doctor, you might start to think that what you are feeling is not real. I went through that in the beginning, with doctor after doctor and trying this medicine and that medicine. I started to wonder if I was losing my mind. There is a doctor out there that can help you. You can only do what you can do. Don’t push yourself because that only makes things worse. Be good to yourself.