Millions of Americans live in pain each day. I am one of those people. I have outlined my neurological disorder, Benign Fasciculation Syndrome, in previous posts. In a nutshell, my muscles involuntarily fasciculate or twitch (primarily in the lower legs – 24/7, but it happens randomly all over my body). Chronic fasciculations lead to muscle pain, fatigue, weakness, stiffness, and cramping. My symptoms also include 24/7 paraesthesia (coldness, numbness, pins and needles, stiffness, and pain) type symptoms in my hands and feet. BFS affects your balance, can make you dizzy, and often I get painful vibration type symptoms shooting up and down my arms and legs. Many of my symptoms overlap other neurological disorders such as fibromyalgia. Here is how I deal with my pain:
1. You do not get an award for being in pain. So advocate for yourself and find a doctor who will advocate for you. They are hard to find. Most doctors could care less about you, but there are good doctors out there.
2. Control what you can control. Live a healthy life. Eat healthy foods. Exercise daily. If you are healthy, this will control any pain caused by self-inflicted illnesses such as being overweight or unhealthy. This will also help keep stress levels low. Stress is one of the biggest triggers to exasperate pain symptoms. I do not feel like exercising and my body is somewhat exercise intolerant, but I am not in any more pain after exercise than if I laid in bed. In fact, a stronger body is better equipped to fight pain than a body atrophying from lack of use.
3. Understand as bad as you have pain there are millions of more people who have it worse. I consider myself lucky because my legs are in constant pain, but I still have my legs. Thousands of military men have lost their legs and other limbs in battle.
4. Talk about your issues with others. This is not only a good way to help relieve stress; it is also a good way to advocate for yourself. Other people may have information that is helpful.
5. Join a support group online, it is always good to find people who have similar issues and understand what you are going through. My rock climbing partner has Parkinson’s Disease. – this is very humbling and motivating to me because he is so positive about everything.
6. Live! 80/29000/700000 – This is how many years/days/hours the average person alive today will live. We are not here very long and we need to take advantage of the short amount of time we have. Make a difference in something. Set and achieve goals. Each day I try to achieve something that people who suffer chronically from BFS would not be able to do. In fact, I am 50 and I am doing things 99.9% of 50 years could not accomplish. Get outside of your comfort zone.
7. When you have chronic pain every day is a bad day – make that day better for you and or someone else. Work each day to be a better person. Be a leader, not a follower or victim. Do not be content to be a burden on your family or neighbors.
8. Fight – do not quit and never give up hope. Stay positive. Minimize your depressed levels.