A Day In The Life Of Chronic Pain
Good Morning Pain!
The alarm goes off on any given morning and my first thought is... I wish I could sleep more, my second is usually ...Ouch that hurts! In 2000 I was diagnosed with Fibromyalgia, and later in 2005 with Rheumatoid Arthritis. Fibromyalgia is defined by MayoClinic.com as a disorder with widespread musculoskeletal pain along with fatigue, sleep, memory and mood issues. The cause is still unknown. Rheumatoid Arthritis is defined as an autoimmune disorder where the immune system mistakenly attacks your own body's tissues. In addition to causing joint problems, RA can also affect your whole body with fevers and fatigue along with causing damage to your organs. So my pain is usually in more than one specific area, sometimes more in my joints and others in my muscles, other times in both. Unfortunately if I am not experiencing pain in my body and have good energy, this usually points to all the inflammation traveling to my stomach and wreaking havoc there.
When I was diagnosed with Fibromyalgia, some of the biggest symptoms for me were total exhaustion and achy arms. My children were small, and my first goal was just to get them on the school bus and head back to bed, my second was to shower before they came home. I was sure there was something seriously wrong, and shocked when it was determined by a Rheumatologist as Fibromyalgia, something not all Doctors even recognized as a "real" disorder in fact by some it was termed a "wastebasket diagnosis." It most definitely felt real to me, and to the people I met in my first education class for Fibromyalgia, in an Army medical facility, some of these people could no longer hold down a job due to pain, and depression from that pain. In later years while I worked as a Chiropractic Assistant, we saw many patients who suffered tremendously from this chronic condition. Before being diagnosed with RA, one of the biggest symptoms again was fatigue, I could not stay awake while doing something as simple as waiting in the drop off line at my child's school. I did not want to drive because I found myself falling asleep at stop lights!
Testing, Testing, 1,2,3...
The symptoms to these two conditions mimic many other diseases such as Lupus, MS, even Cancer. No blood test can determine Fibromyalgia, to be diagnosed, widespread pain must be present for 3 months, pain and tenderness has to be located in 11 out of 18 areas, to include; arms, shoulders, rib cage, lower back, buttocks and more, these are called tender points. Some other symptoms are Irritable Bowel syndrome, numbness in hands and feet, tension and migraine headaches.
RA is determined by various blood tests and x-rays, sometimes no medication is needed other than a pain reliever if this disease is not active, but regular visits to the Rheumatologist to make sure it is not causing joint destruction or damage to the organs is recommended, if it is very active, other medications may need to be prescribed. Anemia is also common in RA, in my case, it was the reason I could not stay awake. Anemia is basically a lowered number of red blood cells, some symptoms of Anemia include; fatigue, dizziness, fast heartbeat and headache.
So What Helps?
Let me preface this by saying... I am not a Doctor, nor do I play one on T.V. but this Hub was written in response to the question "Chronic Pain Sufferers, How do you get stuff done through pain spikes and mental fog?" Since at this time I am going through what is termed as a "flare," ( a flare is when your disease or disorder becomes more active, uncomfortable and intensifies) I was feeling inspired and qualified to answer.
- Have a good support system in place, for some this is a good friend, or family member. I have great support in my spouse, but have witnessed this is not always the case, so you may need to find support in a mental health professional. You may even find you need both, a good friend and good counselor, because it is not uncommon at all to become depressed when in pain, and discomfort every day, and with the loss of ability to do certain things. Most of us can not afford to hire help, but if you can, I highly encourage it, even if it is a one time event, a cleaning company if your house is out of hand, or a neighborhood teen to clean out your garage, or mow your grass. Perhaps this could be a gift you could ask for on a special occasion, such as your birthday.
- Do not over do it. Just because your best friend can rise at 5am, go to the gym for an hour, cook breakfast, work, come home, clean, and help with homework, does not mean we can. Do what is needed, don't be afraid to ask for help, it does not make you weak, just smart.
- Gentle exercise helps me, I attend Jazzercise, where they have low impact exercise and encourage you NOT to exercise through pain, but to listen to it and compensate with easier moves. Gentle walking is a good start, trust me, I know that some days getting out of bed feels like you have ran a marathon, but at times we have to push just a little to get going, and the movement helps. Swimming is a great exercise for these conditions as well.
- Take care of yourself. Take a good multi vitamin. I also find that sublingual B complex can help with low energy. For tummy troubles, a pro-biotic supplement can be a life changer, so you don't feel like you have to camp out in the bathroom on bad days, I like Digestive Advantage Intensive Bowel Support by Schiff. (Please make sure this is alright with your Doc.) Practice good nutrition, it's easy when you don't feel well to overeat, or not eat enough, be mindful of what goes in your system.
- The Brain Fog is a tough one, sometimes not recalling the name of something, or someone, even forgetting what you were doing. Lists help, other times I ask my husband or kids to text me, and remind me if they need me to run an errand while they are at work, or school. Keeping your brain engaged in activities such as Hub writing, helps, I have heard puzzle solving such as Sudoku, or Crosswords help. Sometimes, when I just stop trying to think so hard, the answer will come. I find if I am in a rush to get to a Doctors appointment, writing things down such as questions and the medications I am taking, helps me not to go totally blank, and I get better care that way. Try to remember to put what you need for appointments the night before in your wallet, purse, or car. Set out your clothes the night before so you don't have to stress over what to wear, or run around trying to find something.
- Set goals. On really bad days for me, the main goal is showering, and getting ready for the day. I find I feel better and rejuvenated if this occurs, and it may encourage me to move on to the next task.
- Learn to say no. Taking on to much because we don't want to appear sickly, or lazy just results in exhaustion, and bitterness.
- Learn to say yes.Yes to what you really want to be involved in, I know it's scary, but we can not cut ourselves out of a productive life just because of illness, so if there is something you really want to do...give it a try
- Listen to your body.There are times when all you will be able to do is rest, this is what your body needs to recoup. I realize for some this is difficult with work and family, do the best you can. Go to bed early, have some frozen meals readily available for dinner, let the house work go as much as possible.
- Don't forget to have fun. Okay, so you can't go hiking with your kids, maybe you can play a board game, or make cookies, watch a family movie together, take a drive and listen to some good music. Illness is not an excuse to separate yourself from family and friends, they need you too, everyone in this life has their own set of challenges.
- Attitude. It is so important to have a positive attitude. The Clinic I worked for had a Fibromyalgia support group that I helped facilitate, the difference for most on how healthy they felt, was their attitude and willingness to be active in their condition.
- Have hope. My personal faith plays a big part on how I am doing. Knowing I can pray and trust God is an essential part of this process for me.
I hope this is of some help to those people going through illness. It can be hard to tackle such a personal subject for me, I usually like to keep my writing fun and light hearted, but if we don't share tougher experiences, how can we learn from them? Take care of you, and take care of each other.