Fibromyalgia: Explaining and Understanding- 2 Tough Challenges

Explaining and Understanding Fibromyalgia are two tough challenges that I can understand through personal experience. These challenges are faced by the person that has the illness, the immediate family, relatives, friends, and believe it or not, the medical providers also.

It's hard to figure out a short way to answer when people ask : What is Fibromyalgia? Some people may think, we could get away with just saying, it is pain all over the body and chronic fatigue. Unfortunately, it's not that easy, and it's not just that! It feels like we have to go through a whole list of symptoms to explain what Fibromyalgia is, and most people don't even know what to say after hearing all that.

I found out about Fibromyalgia in 2008. However, one of the biggest ironies in my life is that I grew up in close contact with this illness without knowing it existed or what it was.

When I was growing up, my mom was constantly sick. She was in and out of pain attacks, unable to perform daily chores consistently, colds and infections seemed to put her through much more discomfort than the expected, medicines gave her strong reactions, changes in weather and temperature made her really sick, dizziness, fainting spells, sensitivity to light, sounds and smells, stomach problems, severe migraines, depression, concentration and cognitive difficulties, sleeping problems, complete lack of energy, and all the limitations that came with this combination of issues. To make matters worse, if she experienced other medical problems, surgeries or injuries, they all seemed to be more severe than the norm, lasted longer, and were accompanied by all the Fibromyalgia extra bonus symptoms.

She visited all kinds of doctors that could not explain what was wrong. She went through countless tests, and treatments that did nothing to improve her condition or prevent recurrences.

I remember the times when she was in bed unable to move. This is something that we, people that have Fibromyalgia, can compare to feeling like a big rock or block that cannot be moved, or to be unplugged from an energy source or socket.

My sister and I didn't know that my mom was awake and able to feel/hear everything. We were little, and we didn't understand what was happening. We tried to wake her up in all kinds of ways that I'm sure my mom did not enjoy at all. You can imagine a couple of little girls jumping on her bed, pulling, pinching, trying to keep her eyes open, making noises with things, making the alarm clock go off, asking for food, hungry, crying, frustrated, upset, sad, and finally giving up. It was even more frustrating when she could open her eyes, but she could not respond or get up. One day, we were very hungry, and could not make her get up. So, I opened a jar of jalapeño peppers because they looked colorful and juicy. Oh yeah! I guess I don't need to describe that… and my sister, watching my reaction, didn't dare to touch them.

We kept growing up, adjusting to her condition, hearing negative comments about her, and still no answers were found. She had periods of time when she was doing very well. During those times, she seemed healthy to us. Then all of a sudden, she would get really sick again without an apparent reason. This is what I like to call the roller coaster of Fibromyalgia, one day we are doing great, going up, up, up, but it's hard to tell when the downs are coming, how deep they will be, or how long they will last. The person that suffers the condition is on the front seat getting the worst of it, but all the other passengers feel the effects as well.

People used to say that she was just lazy, had no motivation, not being a good mother or wife, pretending, sick when it was convenient for her, hypochondriac or neurotic… blah,blah, blah. By the time I became a teenager, I had already started doubting about her condition. I was trying to keep up with the house chores, help with cooking meals and taking care of my sister. When, I started high school, I had finally formed an opinion. I adopted an attitude resembling the attitude of many other people around me, full of indifference and doubt towards her pain and continuos illness. I started rebelling against her, repeating all those awful things I had heard throughout my life, and that I had accepted as true. When she was sick, I treated her badly. I used to tell her things such as "You need to get over it." You just don't want to do anything, I have to do everything for you." "Stop pretending, I don't believe you." "You are exaggerating, it cannot hurt that bad." "The doctor said there is nothing wrong with you, so you are making it up." You are lying." "You don't love us." You don't care about us." "I will never be like you." Wow, if I only knew what I was saying back then. I really worked very hard to become a woman completely different than my mom. Nevertheless, in the end, I could not escape from "Fibromyalgia."

My symptoms started developing after my pregnancy. I really fought being sick. I pushed harder, tried more, told myself that I was fine, that I just had to think positive, relax, work out, eat better… No way I was going to be sick all the time just like my mom. I had to keep on going. The roller coaster effect was not too bad at the beginning because my periods of wellness were longer than my periods of sickness. Then, the periods of sickness started getting longer and deeper, until I became disabled. The first time I was completely drained out of energy, I was home with my little man. I fell on the floor. I could not move, and I could barely talk. It was hard to tell my son how to contact his dad, but he did it. Then, he sat right next to me the whole time until his dad got home.

Just like my mom, I went to so many doctors, had so many tests, spent long times in hospitals and clinics!!!! Some doctors treated me badly and even told me that I was pretending or that I had mental or emotional issues. Fortunately, some great doctors tried hard to find answers. I was diagnosed with many other conditions throughout this whole ordeal. It took years to figure out that I had Fibromyalgia. So, imagine how much money went to doctor's bills!!!!

One sweet lady, after listening to my story, asked me if I had ever heard about Fibromyalgia. She told me, her best friend had been suffering with Fibromyalgia for years, and that I was describing exactly the same thing. So, I mentioned it to my doctor. She went through my records, checked some other things, run some other tests, and after a while diagnosed Fibromyalgia.

The silly thing is that, I was diagnosed with this illness a year before my mom was diagnosed. How messed up is that? I told my mom all about it of course, but she never asked her doctor. I think she was afraid of asking. I was not surprised when she told me she had been diagnosed. What a relief to finally get an answer after all those years. I cannot help crying, when I think about all she went through without knowing what was wrong, and with such lack of support and compassion.

Then the guilt hit me!!!! It has taken me a long time to forgive myself for the way I treated her, for not understanding how much she was suffering with this illness, and for not having compassion and love for her. I felt ashamed that I had to suffer the same illness in order to see her pain. My dad passed away almost three years before my mom was diagnosed, so he left without knowing the truth about mom's illness.

There are studies that suggest that Fibromyalgia may be hereditary, but it has not been officially determined if it is. Two of my mom's cousins, and my dad's sister have been diagnosed with this illness. That makes 5 women in my family with this condition.

Yes, Fibromyalgia is tough to explain and understand. If you happen to have someone in your life with this complex illness. Please don't give up, please don't become indifferent or doubtful. I know it is overwhelming and frustrating to plan our lives around someone that is experiencing a complex illness with unpredictable downs.

When you feel like you cannot deal with it, please try to remember that compassion, caring and love can make a big difference for everyone involved. Enjoy the times of wellness, and prepare for the down times.

Here are some ideas on how to make things a little better:

1. Take advantage of the periods of wellness, but do not abuse, because doing too much will send you faster down the hill.

2. Learn to read the signs of your body, stop and rest when you feel symptoms emerging. Ignoring them will not help.

3. Plan your activities and days with some kind of flexibility, in case you need to modify something due to symptoms acting up.

4. Try to reduce stress levels as much as possible.

5. Read blogs and information, share your experience, crete awareness. If your family and friends are informed, they will be able to cope better with the situation, and help you out when you need it. They will understand more and judge less.

6. If you have children, train them so they know what to do if you cannot move or if you get dizzy. Some basics will help in a difficult situation.

7. If you have other medical conditions, surgeries, or injuries, remember you will need extra time to heal because Fibromyalgia symptoms tend to get very active when something else is going on.

8. Try to find natural supplements to help your body. In my case, I benefit from taking vitamin D in the morning and the evening, Vitamin B12 sublingual, StandardProcess Cataplex B, StandardProcess Drenamin, Magnesium, Calcium and Vitamin C.

9. For pain reduction, Doctor Comanor's Solution Dietary Supplement helped me decrease the pain levels dramatically, to the point that I completely stopped taking my daily double dosage of Alive, and I have barely used my Biofreeze. Biofreeze, by the way, is amazing for Fibromyalgia pain.

10. Keep in mind that regular dosages of medications can be too much for us sometimes. Some doctors are aware of that and some are not. So, I try to mention it if I remember. Some medicines will activate our symptoms, some will make us sleep for ever, some will cause insomnia, or serious stomach pain. After trying lots of different medications, I decided to try more natural organic options, and avoid the chemicals, because both my mom and I have had bad reactions to most medications with chemicals.

11. Antidepressants may not be a good option for some people, and some doctors try to treat Fibromyalgia with antidepressants. When I was treated with antidepressants, I started having extreme mood swings, and terrible emotional breakdowns. The antidepressants affected me in such a way that I ended up in the hospital.

12. Lyrica helped me a little for a while, but it is very expensive. I decided to stop using it because the help was minimal.

13. Massages are definitely worth the expense. One time, before I was even diagnosed, I was in so much pain that I could not lie down, sit or stand. I called the doctor's office, and they suggested a massage. The therapist knew what I was dealing with, and she helped me bring the pain levels down a lot. I had a much better day after that. I try to get a massage every chance I get. It always helps.

14. Swimming, light workouts in the water and slow yoga help a lot too.

Please feel free to share your experiences in the comment section.

Helpful Links:

Why am I always in Pain? Fibromyalgia explained. By Erin Elise