Thursday, September 15, 2011

Positive outlook on Fibromyalgia

I am writing this blog post to get the word out about Fibromyalgia in a POSITIVE way.  I have looked everywhere online and am yet to find a POSITIVE group for fibromyalgia support.  Positive as in I am going to learn to control this beast.  I will get it under control.  Not I am doomed for life and all I can do is sleep all day.  A lot of people will probably have a problem with me saying that but it is the truth.  YES I am in flare up mode right now (if you have fibro or know about it you know what flare up is). 

A little bit of my history:
I have had fibromyalgia for two years now. Maybe 4 years total but 2 years very bad. I think the epidural they MADE me get during birthing my twins triggered it.  I wanted to birth them without pain medicines but the doctors were afraid Twin B (Nathan) would turn after I delivered Twin a (Natalie) even though both were heads down before labor and delivery began. I have had depression problems as well as Chronic Fatigue Syndrome since their birth.  The fibro kicked in after changing Depression Meds.  That is a whole other blog post!! 

I do not like to tell others that I have fibromyalgia.  People always look at you so strange when you say you have that and feel so sorry for you.  Society has made fibromyalgia such a negative, nasty disease to have.  3% of the general population have this disease.

Yes I have pain every day,  take tons of pills, have depression problems, anxiety, tension and migraine headaches, dizziness, nauceous, trouble breathing, weight gain, neck pain, muscle aches, eye twitching, muscle spasms, leg cramps, decreased energy, insomnia, fatigued, fibro fog (but this could just be ADHD I had growing up), numbness in hands and feet (yes i have dropped quite a few things including a laptop which shattered),  Menstral periods that last for 6 weeks at a time, extremely dry skin,and the list goes on.

Most days it takes every bit of what I have to get through the day which includes taking care of my four children, two of which have special needs.

But I do know several things :
1. Love your down time.  EVERY blog and facebook group I see talks so bad about this horrible fibromyalgia that keeps them down all the time.  I use this time to read my bible, pray, sit in the silence of the HOLY SPIRIT.  It is amazing.  Or I will get some craft work finished.  It is amazing what crafty items I have made in the last year during my "down time".

2. Create your NEW self ASAP.  If you are living in your past life and dwell on it daily, then you will HATE fibromyalgia.  You will always hate fibro as long as you are living in what you used to be.  Example is "I didn't need any sleep, I never felt bad, I could do anything." 

3.  Life is still GOOD!!!!  There are still good parts of life like worship, passions, family, social activities that still exist.  If we look at these we will still see the family that loves us, the things we still enjoy doing, and the accomplishments we have made.

4. Keep hope!!!!!! Even though there is not a cure or special drug to take to cure or make fibro better we do know the important roles of exercise, medication, stretching, pacing.  There is medical research being done currently on fibro and there will be better therapies as the years pass.

5. You have to respect and care for those around you!! Yes you need someone to lean on when the fibro is at its worst but you are not always at your worst.  You still need to love and respect those around you.  You still need to be good friends to those you care about.  You still have lots to give them.  You need to be open with family members but at the same time you need to be supportive of their needs. 

6. Think Positive Fibromyalgia does not kill you. It is frustrating and painful, but not life threatening.  Its important that you practice positive thinking and affirmations on a daily basis.  Our thoughts are connected to our bodies and health so if you constantly think negative thoughts about yourself and your illness then you will experience a surge of negative symptoms and your condition won't improve.  Humor therapy has been proven to increase the positive outlook for patients with fibromyalgia.  Laughing also boosts the immune system as it increases the antibodies. When you laugh, you improve your lung capacity and this helps in increasing the levels of oxygen in the blood. Most people do not even know I have fibromyalgia because I do not dwell on this horrible disease. 

7.  You have to put forth effort towards controlling this disease.  If your doctor says to not eat certain foods, then dont eat them.  If you are told to exercise when you have good days then do it.  If you are told to appreciate the simple things in life then do so. If you just are lazy about it and sit around and do not push yourself then it will NEVER be under control.  You will NEVER accomplish anything.  It will not happen magically.  You must put forth effort.

8. Pace yourself. You have to pace yourself to avoid fatigue and eliminate as much stress from your life as you can.  You can't do everything and some days will be better than others. Don't cram too much into your day.  Save energy for the things you want to do and you'll feel better.  I have to take care of my 4 kids but if I have church that night I make sure I rest when my husband gets home so I am able to go to church. If you are feeling strong and energetic that day, DO NOT overdo it.  You will pay later. So pace yourself so you will not crash. 

9.  Have adequate sleep.   No I am not saying sleep 15 hours a day.  That is wasting your time on earth.  I am saying set a routine or schedule for yourself.  This will help your internal rhythm as well.  This will take some time and effort to establish but it is a must. 

10.  Exercise.   Yes there are some days it is all I can do to keep my kids fed and out of the street but on the good or okay days it is important to get some aerobic exercise in.  It provides symptom reduction in fibromyalgia because it strengthens the muscles and eliminates muscle weakness over time.  Aerobic exercise also provides a good supply of oxygen to muscles and help them to become less stiff.  Other proven benefits of aerobics include: reduction of injuries to the muscle, reduction of pain due to the release of endorphins, and reduction of other cardiovascular diseases.

11. Massage therapy. Massage offers fibromyalgia patients a lot of benefits. Massage increases flexibility, blood circulation, range of motion, and muscle repair. The natural pain killers that are released (endorphins) during massage decreases pain associated in fibromyalgia. Massage additionally reduces stiffness and improves sleep. In fact, massage should be included in the physical therapy for fibromyalgia patients.

12. Learn to relax This is still one I am struggling with.  I am learning about Christian Meditation.  It is unlike the meditation most are accustomed to. Instead of letting it all out, you let Christ all IN.  Prayer also helps me relax.  Enjoy nature walks or sitting in the sunshine in your yard.

1 comment:

  1. Wow Mary, I have never heard you open up like this before. I never knew the story behind how you were diagnosed. I can tell a lot of thought, love and bravery went into writing this blog and I am moved by your strength and your faith in the Lord. Love you sis!