How I Learned to Shove Fibro in the Background

GrammyG asked in another thread how I learned how to focus and keep fibro in the background. I thought I'd respond in a separate thread so anyone who wants to know can see it here.

I will start with Crohn's disease since it also had a bearing in my learning to deal with illnesses. I was hit with Crohn's when I was 30. I had just had my last child so my three children were...an infant, a 15 month old, and a daughter who had just turned 4 years old. I had a lot of pain and diarrhea with Crohn's but I didn't have any choice but to try to keep moving forward. After all, I had three very young children to take care of plus my home and my husband. I learned a few things to help me work around Crohn's but it was difficult because this illness made me anemic and extremely fatigued. Some days it took all my strength to put one foot in front of the other, but I did it.

Nine years into Crohn's, fibromyalgia decided to join the party. I was just watching TV and my toes on both feet started to really hurt. A minute or so later my ankles started hurting, too. This pain moved up my body in a 45 minute period and, when it hit my elbows, it was like I had banged my "funny bone" really hard and I got the extreme shooting pain down my arms and into my hands. AND, the pain stayed that way for over two weeks! I couldn't eat, sleep and all I did was cry from the pain. Since the pain was symmetrical, I thought for sure I had rheumatoid arthritis!

I headed to my Internist at the time, and he put me on ibuprofen. It was still a prescription drug back then. After tests, he diagnosed me with "fibrositis". (They used to think fibro was caused by an inflammation of the muscles, tendons, and ligaments but, when they discovered that wasn't so, the name of this illness was changed to fibromyalgia.)

I, like most of you, started searching. I couldn't believe this was what was happening to me. Thank God I didn't know how to use a computer. Personal computers had just come out. But I did have medical books and scoured through them. Many times I took on the symptoms of other illnesses because all of this searching was causing a lot of anxiety for me. It's amazing how powerful our minds can be!

The anxiety became another major issue and I was put on quite a bit of Valium which was affecting my personality. My mother was quite worried. She said I was not acting like the same person. (I eventually stopped the Valium on my own.)

Unfortunately, I picked up a copy of Reader's Digest in the doctor's office and there was an article about Lyme disease. They had just discovered this illness and it sounded so much like what was going on with me AND there was a treatment for it! So I talked to my doctor about it and he said there was no test at that time for Lyme. But they did put people on Tetracycline to kill the bacteria. Well, as luck would have it, I'm allergic to Tetracycline. I told him that and he actually whined and said, "But it's the drug of choice." He went on to say he thought I would be fine so I agreed to take it in hopes that this would make me pain-free.

I started bleeding from my bowels several days after starting this medication. This is what had happened years back and that's why I have an allergy to it. I called the doctor and he said I was to stay on this medication for two full weeks for it to work and I was desperate enough to have it work. The Crohn's was in a flare so I was running to the bathroom about 25 times a day and every time the water was a brilliant red. I was losing a lot of blood. I called my doctor a couple more times and he kept saying I NEEDED to stay on the medication. So I did.

Once I finished the Tetracycline, he did a sigmoidoscopy on me and sucked out a lot of blood from my colon and then sent me home. I could barely walk. I got home, managed to cook dinner for my family but I couldn't eat. I was terribly sick and had to hang on to the walls to get to the bathroom and back to bed.

Two days later my husband forced me to go to the hospital and I'm thankful for that. I was admitted and needed two blood transfusions plus my potassium was dangerously low and they were surprised I didn't have a heart attack. I was hospitalized for five weeks plus transferred to the Cleveland Clinic to have my colon removed. The Tetracycline had caused my colon to be cobblestoned with ulcers and it had to be removed because I was bleeding to death. I had two more transfusions before that surgery and needed another two units after surgery but instead they gave me a lot of iron to take. They didn't want to keep giving me transfusions since this was about the time they discovered that AIDS was being spread in the blood supply. Now I had another thing to worry about!

All of this happened because I couldn't accept the diagnosis of fibromyalgia! I'm a slow learner. LOL I had high anxiety because I was afraid of my future. I didn't want to live with chronic pain but it was becoming clear that I really didn't have a choice. Pain goes with the territory. I just couldn't believe this was happening to me.

I got back home and continued to search until one Sunday my minister gave a sermon on fear. He taught from the scripture that I have in my signature. This was a revelation for me! FEAR!!! Fear was causing me all of these problems that I went through...the anxiety, extra pain, and surgery. God didn't give me a spirit of fear. Instead He gave me power, love, and a sound mind! I definitely didn't have a sound mind. I was so confused and constantly searching and worrying. I started to focus on the fact that He gave me power and our minds are soooo powerful. We only use 1/10 of our brains in our lifetime. I experienced the power of my mind when I was taking on symptoms of illnesses I thought I might have a few years before. Amazing!

I decided to use this power in the right direction and it, in turn, would give me a sound mind. The first thing I did was totally accept my diagnosis. No more reading medical books. I put them in the garbage and, believe me, that was extremely difficult for me to do! This allowed me to realize that fibro was just a small part of me. I'm not fibro and fibro was not going to define who I was. I had talents, blessings, and things I wanted to do with my life and, by golly, I was not going to allow fibro to keep me from living my life to the best of my ability. It had already done a number on me but now I was going to be the one in control!

I just read an article by Michael J. Fox. He said that once he accepted his diagnosis of Parkinson's he could see the rest of the "room". Parkinson's had overtaken his life and he couldn't see anything but Parkinson's until he accepted his diagnosis. This is exactly what happened to me. Once I accepted the diagnosis of fibro and moved on with my life, fibromyalgia lost it's power over me.

Instead of thinking constantly about this illness, pain, and how I was going to live with this the rest of my life, I filled that space with looking at my blessings, taking each day at a time, looking forward with anticipation to the next day since it could be a good day, doing things I wanted and needed to do through pacing myself, and just enjoying the life I had. By doing this, I discovered that while busy, the pain faded somewhat in the background! I wasn't thinking about it because I was busy living my life. It was there all the time, and still is, but I'm the one in control. My strong, sound mind is the "elephant" in the room....not fibromyalgia!

I have been able to live successfully with this illness for decades and plan on living decades longer with it...if no cure is found. And, I know I can handle this and any other illnesses that come along because I now have a firm grip on how strong we are as humans. I will continue to count my blessings and look at the beauty all around me. This makes me a very happy person, too. It sure beats the negative thinking that caused me so much pain and problems.

I hope I didn't omit something and I also hope this will help all of you. We can do anything if we help ourselves and put our mind to it. I'm living proof of that.

Sherrine

Yes, how inspiring. I'm really sorry about what happened regarding your allergy and that destroying your colon. (Im surprised you didn't sue the dr.)

I thank you for helping me. Your attitude and suppport has given me hope in my life. Great testimony!

Thank you Sherrine!! What an awesome testimony!! You have encouraged me greatly and when something happens and I think I can't due to pain I will think of you and think oh yes I can!!

Thank you again for blessing us all!!😇

Sherrine, you're an inspiration as always! Thank you for taking the time to share this.

I am so thankful for this forum and its wonderful moderators and members. Always a good reminder to me to make the very best of each day and that we do the very best we can, with what we have. Bless you!

I am writing down the main points from the book I mentioned on Pain from Dr. Halla. I thought the following was perfect to support Sherrine's way of thinking concerning her pain and how it has affected it.

Chapter 2
The pain you are experiencing, what causes it, and how you respond to it are crucial to what you hope, wants, fear, expect or desire to happen.

Pain is felt or perceived.

The feeling of pain occurs in the body, first in that part of the body called the periphery (skin, muscle, tendon, ligament, bone, joint, soft tissue around the bone and joint). *The announcement of pain.

Picture the pain signal as a small object that is constantly in motion and needs a pathway/roadway on which to travel. The pain signal is picked up by a pain receptor (starting point) at the end of the nerve fiber (the road) that is connected to the spinal cord. The pain message enters the spinal cord which carries it up to the brain where it is evaluated and interpreted.

At the same time, the pain message may be inhibited by the brain. There are descending nerve fibers from the brain to the spinal toward the initial point of entry of the pain impulses. These fibers can reduce the transfer of pain signals to the brain through the release of various chemicals, thereby decreasing the number of pain signals that reach it.

The pain system is programmed as a 2 way system to regulate pain by increasing and decreasing pain signals that reach the brain. The body has its own pain killers and pain enhancers. Cells in the brain and spinal cord produce chemicals that are similar to morphine. These chemicals reduce pain in the same way that morphine does. The body produces them as a pain reliever. Two of them are called endorphin and enkephalin. They may be released in response to pain itself, exercise, acupuncture, and even a placebo.

In the brain, the impulses first arrive in the thalamus, which is a sorting and switching station for pain impulses which then send them to other parts of the brain (cerebral cortex which is involved in cognitive activities such as intelligence and thinking, Limbic system, etc.) for evaluation and interpretation. Nerve input from the cerebral cortex contributes to the pain perception in the way that a person’s attitude and thinking influence the perception of the pain signal. The limbic system provides motivational and emotional input so that the feeling states such as sadness, anger or bitterness can worsen pain.

So what a person thinks (Ex: about life in general) and consequently feels about pain, the condition itself and what he thinks is causing the pain, will have a significant influence on the intensity and severity of his pain. Example: focusing on pain and pain relief only intensifies the pain. Since his response to life, including pain and bodily problems, is related to his desires, thinking, and attitude, pain perception can be changed. Therefore, there is hope.

Thank you all so much! You all are a blessing to me, too. I care about all of you and that's why I wrote this. I really hope you will take these words to heart.

This really can help you. You see this from Michael's response in this thread. When he arrived, less than two years ago, he was a mess...a cute mess but still a mess. LOL. He was really suffering with a lot of pain and EXTREME anxiety. He emailed me and we had many discussions and just look at him now! He has developed a wonderful positive outlook, gotten his anxiety under control, and that helped get his pain under control along with things that were suggested on this forum. He works around 50 hours a week, too. He has gone through being unemployed to being a manager while dealing with fibro. He is amazing but he worked at this and it made a huge difference in his life and he's out enjoying life again. This is what I hope for all of you.

This doesn't make the pain disappear but it sure fades in the background as you start living again.

I know I've been promising a thread about how studies have proven that a positive attitude really helps. I'll try to get to that by this weekend. I've just been so busy with yard clean-up and doctors' appointments...fun, fun, fun! LOL. So be looking for this also.

Sherrine

Wow! I needed to read this! Thank you soooo much for sharing. I can truly relate on many levels. I've had fibro for almost 2 years now and still find it difficult to accept. I just can't believe this happened to me. I've always been a "worrier" and this happening to me has brought out extreme anxiety because I am constantly researching. Researching illnesses, diseases and of course there are so many scary things out there on the internet. It fuels my anxiety for sure.:( I have been tested for everything under the sun. I've had my brain looked at, my heart looked at, ultrasounds of my legs, ect... More trips to the doctor then I ever imagined. I think...how did I get here? How did this happen to me? I know that I need to let the fear go and accept it. I pray every night to be healed and for The Lord to take the fear from me. It's very scary going from healthy new mom (I had just had my 3rd child) to being in pain and having strange nerve issues constantly. It's been very traumatic.:( Anyway, your story helps. It helps me see a future with fibromyalgia.