Health Update 2015

It has been my intention to write a blog post for almost a year now.  I have learned so many new things about my health in the past two years and I want to share it with you!  I’ve missed you!  So for those of you still reading…

In March of 2013, my normal fibro/CFS cycles seem to take a turn for the worse.  I was spending more time in bed.  My anxiety was out of control.  I was so achy and tired.  Much more than usual.  My legs felt very weak and it hurt to walk.  This was all very intense and different than my normal cfs/fibro routine of 18 years.  Coincidentally, (Divinely appointed) I was scheduled to see a new doctor about this same time.  I finally found a doctor who practices integrative medicine in my area. On my first visit with her, I explained my story.  She looked at me and said, “I can’t believe no one has sent you to see me before this.  You are the type of person I can help!”   And that started our journey together.  I have seen her almost every month since then.  She has tested me for lots of different things.  She thinks outside of the box and her main goal is to help me figure out why I feel so bad.  She is a puzzle solver and she takes pride in her patience and knowledge to find root causes of symptoms.  And together we found out a lot of things that I never knew before.  Let me list them here.  It’s a big list.

Celiac Disease
Hashimoto’s Hypothyroidism
MTHFR Genetic Defect
Vitamin deficiencies
Mineral deficiencies
Intestinal Permeability (Leaky Gut)
Food intolerances
Elevated Epstein Barr Virus counts
Possible Lyme’s Disease

My cousin sent me this article to look at a few years ago.  All the things on this list, are the exact things that my new doctor was addressing.  This is a great reference for you to keep and a great place to start looking for root causes!!!!

10 Causes of Fibromyalgia Your Doctor May Not Know About

I wish I had the room to tell you in detail everything that I have learned.  I have spent hours researching and reading about all these new discoveries we have made about my body.  But the biggest lesson I have learned is that functional/integrative/naturalistic medicine is the only place we should be looking for answers.  A doctor who practices integrative medicine looks at the whole body.  All they bodily systems and tries to figure out why some systems are out of balance.

The gut plays a much bigger role in disease than we ever thought.  Addressing gut issues is bound to have you feeling better in some way.  My suggestions?

Google Leaky Gut Syndrome and learn about it
Take a strong, quality probiotic daily
Take Digestive Enzymes
Get tested for Celiac Disease
Do a trial of gluten free – after being tested for Celiac
Do a trial elimination diet – for food intolerances
Do a trial AIP diet – autoimmune protocol
Some of my favorite functional medicine resources are:

Dr. Mark Hyman
Dr. Mercola
Dr. Tom O’Bryan

No doctor had ever thought to test me for Celiac Disease.  I never thought of it either.  I didn’t have gastrointestinal symptoms!! But I had autoimmune symptoms! Who knew that Celiac Disease could present with autoimmune symptoms without digestive symptoms?  Celiac Disease awareness as well as gluten sensitivity/intolerance is making it’s way into the headlines.  And I am so thankful.  Dr. Tom O’Bryan says that if you are experiencing a chronic health problem or an autoimmune disease – you should be tested for Celiac Disease.  And if you are negative, you should still do a trial of gluten free to see if helps you feel better.  I always told myself that the food I was eating had nothing to do with how I felt. Some of you even wrote to me saying I should try a gluten free diet.   I ate pretty healthy, I thought that was all that mattered.  I was convinced that an elimination diet or a gluten free diet would do nothing.  Boy, was I wrong.  Very wrong.

 And because I tested positive for Celiac Disease, I had all of my kids tested too.  My oldest daughter tested positive.  She was 11 at the time.  It broke my heart, but at least we know and maybe an early Celiac diagnosis can save her years of pain and testing.

I also thought that I didn’t have thyroid issues because my lab tests always came back “normal”.  Until Dr. V tested me for thyroid antibodies and I learned that I had Hashimoto’s Disease.  Find a doctor who knows what they are doing!!!  It’s so important!

We still don’t know why my Epstein Barr counts are so high.  And we have extensively tested for Lyme Disease and are still unsure if that is part of the problem.  One test is positive, but several others are negative.  Still trying to put the puzzle pieces together on that one.

 I have come a long way.  I have many days of relief, but I am still not well.  I know all these new things about myself, but it has not brought about much physical relief YET!  Having answers is a good thing and I will not stop trying!!  We are on the right track!  One step at a time…

Now, in closing I want to share with you a new passion I have developed over the past two years. If you have read my blog in the past, you know that I have always been interested in natural remedies and alternative medicine.  A dear friend introduced me to the world of essential oils two years ago and my life has not been the same since then.  I tiptoed into the world of essential oils trying to help with the pain of fibromyalgia and I am now a huge advocate and educator with Young Living Essential Oils.  My entire family uses them for everyday health and wellness.  They are more potent and powerful than the supplements I have tried in the past.  And they work for our family.  We use them for so many different things from general headaches and stomachaches to the extreme pain and fatigue of fibro and cfs.

Essential Oils have become my passion.  And in sharing that passion, it has also become my business. I thought I would never work again.  But I am working from home, teaching, helping, sharing, and loving all of it.  God has blessed it.  And I am working hard.  If you are at all curious about essential oils and how they have made a difference in my life, then I would love for you to view this video that I personally made.  I even talk about fibromyalgia a bit.

 Introduction to Essential Oils – an online video presentation

I am passionate about essential oils.  And I believe in them!  Let me know if I can teach you even more about these wonderful God given treasures!

Email me at annferguson.yl@gmail.com

Thank you for listening to me.  Thank you for taking this journey with me.  I hope and pray that each one of you is encouraged by the community we have shared here together.  Be blessed.  And never give up.  Keep seeking answers and striving for better health.

Love and hugs!

Ann

P.S.  Ironically, out of nowhere and completely unrelated to any of my other physical ailments, I have been suffering from debilitating vertigo for 5 months.  It has literally stopped my life in it’s tracks.  After much testing and seeing many doctors, I found an awesome vertigo doctor in New Orleans that diagnosed me with having a tear in the membrane of my left inner ear.  Thank God for a diagnosis!  I thought I was dying – it’s been very scary!  With a diagnosis, I am on my way to healing and recovery.  I kept saying to my family, I wish this vertigo would leave and I could just get back to my normal chronic illnesses!  (Never thought I would say that!) 🙂  Life is a journey!

Comfort and Compassion

My Inspiration:

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.
II Corinthians 1:3-4 

My Thoughts:

Comfort and Compassion. Father of Compassion. God of all Comfort.

God understands the human need for comfort and compassion. Not only is He omniscient, but we were made in His image.  He is the author of comfort and compassion.  So many times in my life, I have seen Him as the giver of these things. To me and to others. And in turn because we understand this human need and are the blessed recipients, we are then able to share these gifts with others.

I have experienced the comfort of my Lord countless times throughout the 16 year journey of fibromyalgia and cfs. In times of discouragement and despair. In times of emotional hurt and physical pain. In times of depression. In times of overwhelming fatigue. Knowing He is there, listening and caring for me, brings peace.

The words of God comfort me. I love to surround myself with His words of promise. For even though He has chosen me to walk through the hardship of chronic illness, His promise to be with me brings comfort. The New Testament is filled with examples where Jesus offers comfort to hurting people. From healing the sick to feeding the hungry, Jesus set a wonderful example for us. He knew how to comfort people. And meditating on His words of comfort for others offers comfort to me. He is a loving and compassionate Saviour!

Matthew 14:13-14
When Jesus heard what had happened, he withdrew by boat privately to a solitary place. Hearing of this, the crowds followed him on foot from the towns. When Jesus landed and saw a large crowd, he had compassion on them and healed their sick.
And then He went on to feed them because they were hungry. Compassion for the hungry. Comfort for the sick and hurting.

I have been blessed to receive comfort from family and friends through difficult times. Sometimes, God uses people to comfort us. Comfort from God, through friends. Love that. It’s like a double hug! Not to say there aren’t times when we feel lonely and afraid, but in those times if we will cling to His Words and trust, His comfort will abound.

My dad had quadruple bypass surgery last week. It was sudden and surprising. It was a time full of anxiety and fear, for all of us. I was blessed to be the recipient of comfort last week. So many people outpouring their love, thoughts and prayers to my dad and to us, his family. It is a wonderful thing to be a part of the body of Christ. Jesus set the example and so many have followed with compassion. By offering comfort to the hurting.

Dad is on the road to recovery. It will be slow and long. We are praying for no complications. Thank you to those who have asked about him and have been praying for him. Keep it up!  And many thanks to those who have lived out the mission of comfort and compassion to our family.

Many Blessings,
Ann 🙂

Is there a specific moment where you remember you felt the comfort of God? or were overwhelmed by the compassion of a friend? Share your encouraging stories with us!

Tuesday Tip – Vacation!!!!

Last week we went on vacation. To be honest, every year, I dread vacation. I don’t obsessively worry about it, but the thoughts are always there. How will my body handle the traveling? sleeping in a different bed? keeping up with the schedule? eating different foods? stress of the kids out of their routine? UGH. I try really hard to keep a positive attitude and think, “Yay, my parents want to take all of us on a wonderful vacation, how can I refuse! Woo-hoo!” But fibromyalgia and cfs always throw a damper on it and I always wonder ahead of time if it is even worth it. But after it is all over, I am always glad I made the effort and we have wonderful pictures and memories of family time.

So, because of my recent vacation, I started thinking about the things that I do to prepare my body for the trip. I’ve been doing this for so long that I don’t actually THINK about doing these things, they are just essentials for my survival. So, here are my fibromyalgia vacation tips.

Sleeping.
On any kind of trip, vacation or otherwise, we are in a different bed. If you don’t remember, I wrote a post about how much I love my bed at home. Hotel beds, family member’s spare beds, air mattresses, wherever we sleep, we have got to make sleeping a priority. It is no secret that bad sleep will put you in a flare. In my situation, I believe the poor sleep is what got me into this mess in the first place. To the best of my ability, I do whatever I can to ensure a good night’s sleep.
~I bring my own pillow from home.
~I wear earplugs to block out any unfamiliar noises.
~I take my sleeping herbs like I usually do.
~I bring a fan to help regulate temperature. I sleep better when I am cool/cold.
~Fans are also great for “white noise”.
~I do what I can to make the room dark. I love to sleep in.

Eating.
I do well with eating six times a day. I always eat protein at every snack and meal and try to keep my blood sugars balanced. Vacation always brings eating at odd time and different foods. One of my key fibro symptoms centers around my digestive system and vacation can throw things way out of whack. So, I plan and eat smart. These little plans are things that keep me in a routine and hopefully will prevent a flare.
~I always have a snack in my purse.
~I try to stick with eating foods at restaurants that are not too different than what I would eat at home.
~I always carry a bottle of water with me to ensure I stay hydrated.

Riding in a car.
I was always embarrassed when my mom was standing on the side of the road stretching her muscles after sitting in the car for several hours. Now, I totally get it. 🙂 I think it is a combo of getting older and the fibro. Sitting in a car for hours leaves me stiff and hurting.
~I take a pillow in the car to support my neck, back, glutes or whatever is hurting from being still for so long.
~I take a blanket because I love air conditioning, but I always get too cold.
~I will often take preventative pain relievers.
~If I am the driver (which is rare), I’ll stop often to move and stretch.

Pacing.
Vacation can bring on some crazy schedules. Early mornings, late nights, constant activity during the day. It is exhausting even for the healthy!
~I schedule breaks for just being still and having down time. Quiet time. (Fortunately I still have one child who naps in the afternoon, so my break comes with her nap.)
~I take a nap when I can.  (Isn’t that kind of what vacation is about?)
~ I pick an activity that the others are doing, that maybe I can skip, so I can rest.
~If I know I’m going to be walking a lot, I wear comfortable shoes. My feet always hurt at the end of the day. Even just from walking around my house.
~I pace myself. Overdoing it today, means I may be doing nothing tomorrow!

Hot showers.
A good, high pressured hot shower is hard to come by, but when it happens it is like heaven to me! This past vacation, we stayed in a hotel that had an awesome shower! It justs melts all the pain and stiffness away if I can stand in a hot shower that massages my neck and shoulders.

Deep Breathing.
Read my blog posts about deep breathing to learn more about this. But I instinctively put this into practice while traveling. It helps me let go of travel stress.

Let’s just admit, vacations are almost always stressful in one way or another. But the memories made and times spent with family and friends make it all worth it! But if you are in a season of fibro or cfs where the effort may just send you over the edge, then stay home!!! I have done this before and looking back I am glad I did. Times are pretty good for me right now and this particular vacation did not send me crashing when I got home. I was pleasantly surprised!

I hope some of these tips help you to have a fabulous summer vacation! If you have a great tip or vacation experience, please share! I love reading your comments!

Blessings,
Ann

Tuesday Tip – Being a Mommy

How do you be a mommy and have fibromyalgia and/or chronic fatigue syndrome? Well, that is a big question! And one I am going to try and answer in this blog post. My answers will stem from my personal experience which may be very different than yours, but hopefully you will be able to relate to my tips for today.

First of all, I got sick BEFORE I became a mom. I could barely take care of myself in the first two years of illness. I never would have been able to care for little ones during that time. I am so thankful that it happened in this order. I can see how devastating a fibromyalgia diagnosis would be in the middle of trying to raise a family. It would change everything, including relationships with your kids. There was a time when I didn’t know if I could ever handle being a mother because I was so sick, but God has blessed us more than I ever imagined. When we decided to have children, we knew full well that fibro/cfs would be a big part of parenthood and we felt prepared to handle things in spite of the illness.

Family is Priority.
I choose to “save” my energy for my family by saying no to other things in my life. I want my kids to have the best of me, not the leftovers. I guess this could apply to anyone, but illness forces me to make a conscious decision. I choose to spend my limited energy and try to focus on the people that matter most to me. I was telling a friend the other day, that I am constantly calculating my schedule. I am rationing my energy and trying to save some for the busy times. I try to schedule a “rest” time in my day, sometime after lunch, while kids are napping or reading, so that I can get refueled for the dinner, bath, and bedtime hours because those are the most hectic parts of the day. I don’t want to be so spent that I can’t participate in these routines. I only have these little people at home with me for a short season of life and I am doing my best to make the most of it.

Plan, Plan, Plan.
You all know how I am a little addicted to lists! I love them! I take some time at the beginning of each day and write myself a list of things that need to be done. I prioritize and start with the most pressing thing first. You can’t count on having energy later in the day to get things done. You never know when the energy will give out and a crash will come so, making a list and planning allows me some freedom to choose where my energy is most needed. Dinner hour is always a challenge for any mother. So, I have a little tip for you. I had a seasoned mother tell me that when your head hits the pillow at night, you should already know what you are having for dinner the next day. Dinner time is not a surprise – it happens every single day, so don’t let it sneak up on you. If you aren’t prepared then this can be the most stressful part of the day. And we all know what stress does to our bodies! Little ones are cranky when they are hungry. So, be prepared and get ahead of the game. This makes it easier on everyone in the whole family.

Ask for help or hire help.
I have extremely helpful parents and a husband who also is willing to jump in when I need him. They don’t know when I am in a flare. I have to tell them. Yes, at times it seems ridiculous (it’s not), but I have to just spell it out. “I am not doing well today. I need your help. Here is how you can help me the most. Is that something you can do for me?” Don’t beat around the bush. Nothing is more frustrating than assuming your loved ones know how you are feeling. They don’t. Most of the time my husband and parents are more than willing and able to assist me when all I can do is lay on the couch. When they aren’t able to help, well then, nothing gets done and that is just gonna be OK for today. If you can afford to hire some help, my opinion is that it is money wisely spent. Cleaning is the one thing that zaps every last piece of energy out of me. When Christmas, birthday, mother’s day, etc… rolls around I will often ask for the funds or gift certificates for someone to help me clean house. It’s not that I don’t like to clean, I think I am quite good at it, it just robs me of my day and then I have nothing left to give my family. Keeping up with the day to day clutter and everyday dishes/laundry/food prep for seven people is a fulltime job by itself. Hiring assistance for the deep weekly or monthly cleaning gives me a whole day’s worth of energy back. Totally worth it.

Sleep and rest.
Make sleep a priority. Not getting enough sleep not only affects my symptoms, but it makes me grouchy. Have you heard the expression, “if mama ain’t happy, ain’t nobody happy”? 🙂 Well, I believe it is so true that the mom often sets the tone for the whole house. When I don’t get enough sleep, I am grouchy and don’t feel well and then my whole family is affected. I know we all have sleep issues, but I am saying that what we are able to control, should be made a priority.

Prioritize Good Health.
As moms, we often put our own health on the back burner because we are so focused on taking care of everyone else. With chronic illness, we cannot afford to do that! I know there is little about fibro that we can control, but there are some things we can do in pursuit of wellness. We need to make sure we are taking our meds, supplements, and vitamins to keep us the best we can possibly be in spite of the illness. Also, eating right and exercising when we are able are ways we can take care of our bodies. We need to get yearly physical exams and follow ups with our physician concerning medications and blood work. We have some important people depending on us and making our health a priority will only help us be better for our kids!

Letting go of ideals.
Ah, this is a tough one. It’s hard for me. I want so badly to give mothering everything I’ve got. To do it well. To do it right! But I can’t do it the way I want to do it, so I have to let go of the ideal. This is actually a good thing, another blessing in disguise. Having to surrender my mothering because of illness has taught me a valuable lesson. I can’t do it all on my own. Healthy or sick, I shouldn’t be striving to do it all in my own strength anyway. Trusting God daily to show me how to be the best mother that I can be. Asking for practical wisdom and being sensitive to the Holy Spirit’s leading as I guide these little people into adulthood. It’s a privilege. And I am stubborn enough to try to do this in my own power – to be the perfect mom and have all the answers. But being sick keeps me from this self righteous attitude. And in hindsight, I am grateful for it.

Prayer.
My list wouldn’t be complete without mentioning that God is control of it all. He sees our struggles. He knows how often we feel like failures, how hard we are trying, how it hurts us to not be the mother we desire to be, and how lonely it can feel when we don’t have the support that we want and some days we feel like we just can’t do it. Bring it all to God and lay it at His feet. He hears us, He loves us, He knows our pain. He doesn’t promise to take it away, but He does promise grace that is sufficient to get us through the tough times. Take it all to Him it prayer.

I know our day to day lives are unpredictable and I also know that between all of us who are reading this blog there are great differences along the spectrum of these syndromes. This illness shows up differently in each individual person that it attacks, but I hope that if you are a struggling fibromyalgia mom that you found something useful here today. If you have any other tips or stories you want to share with us about motherhood and illness, please do!

Thanks for reading! Blessings!
~Ann

Tuesday Tip – Self Pity

Do you ever want to have a pity party for yourself? You know, sit and sulk about how awful you feel? Of course, you do! Or at least I do! I don’t think we would be human if we didn’t. We all have experiences in our lives that make us want to feel sorry for ourselves. You don’t need fibro or cfs for that to happen. Life is hard!

Dictionary.com defines “self pity” as, “pity for oneself, especially a self-indulgent attitude concerning one’s own difficulties, hardships.”

I am a big believer in acknowledging feelings. I think it is healthy to analyze how I am feeling emotionally and give it a voice. Call it what it is. Self pity, sadness, anger, anxiety, jealousy, etc…. To deny that those feelings exist is just pretending or suppressing. We all have these feelings from time to time. It’s human!!! And self pity is definitely a struggle for those of us who live with chronic pain and fatigue.

I think we run into problems when those feelings become who we are. When we allow them to control how we think and feel by dwelling on them. When we look within ourselves or feed the self indulgence by NOT talking with God about it. By choosing the feeling over what we know is right.

One of my friends will frequently say, “I think God can take it.” Meaning God knows human emotion. When we come to Him and say, God I am just feeling so ______ right now. He is able to hear those words from His children. He is able to “take it”. He can take the doubt, fear, anger, bitterness, self pity, etc… It is how we choose to deal with that emotion that defines if we are sinning or not. Admitting whatever emotion and then asking God to help you overcome it is a great place to start. You will never be able to hide your feelings from the Lord, so you may as well just admit it and deal with it! 🙂

The quickest way to overcome self pity in my opinion is by being grateful. Everyone has something to be grateful for. When I am tempted to indulge in selfish pity, I start naming things that I am grateful for. God is the giver of all things, so I start thanking Him for everything. Sometimes on a particularly rough day, I start thanking Him simply because it is the right thing to do, but it isn’t long before my words meet my feelings and I truly embrace a spirit of praise and gratefulness.

Taking the focus off of yourself and finding ways to help others is also a great remedy to the self pity monster. Sometimes our ability to help is greatly limited because of our health. But even sending an encouraging note or email can go a long way to helping you out of your own self indulgence. Life is more than our illness. Sooooo much more. Try to find someone else who may be struggling in this life and go out of your way to encourage them.

What about you? Do you struggle with feelings of self pity? How do you choose to deal with it? It’s been pretty quiet on this blog lately. So, share your thoughts with us! It may help someone else!

Thanks for reading!
Blessings,

Ann

Tuesday Tip – The Good Days

When I first became ill, over 16 years ago, I rarely had “good days”. I’m not sure if that pattern is the same for everyone, but CFS hit me like a brick wall and was unrelenting for about 18 months. As time went by, I learned more about my body and how to handle the exhaustive list of symptoms. I learned little tricks and helps along the way that has allowed me to live a full (not symptom free) life. I am ever so grateful for that! I can’t control this illness, but I do know that stress makes it worse. So, I am constantly in a state of stress prevention and energy preservation. Anyone else live like this? It’s kind of a necessity and mentally exhausting. Although this can be helpful in preventing flares, sometimes it just takes away all the fun.

The Good Days. Ah, the good days. They come few and far between, but do you ever have them? These are the glorious days where you actually feel “normal”. No pain, no fatigue, no digestive trouble or aching muscles. No headaches, muscle weakness, ears ringing, brain fog, or insomnia. No dizziness, light headedness, nausea, depression or anxiety. Just normal. Just like everyone else, normal. When these days come, instead of fully appreciating them, I sometimes allow them to make me mad. Crazy, right? Why would I waste energy on being upset? Well, because it is these days that make me realize how sick I really am. When I get a taste of the energy levels that most normal people have everyday, I become envious. I can’t even imagine feeling like this everyday!!!! Oh, the things I could do! Still working on these feelings….

Anyway, this tip is about how to handle those good days. I used to live in such a state of stress prevention that I was afraid to expend energy on the good days, because I was scared that if I overdid it, I would pay dearly for it. I am a very cautious person by nature. This strategy of living is necessary when living with cfs and fibro, BUT I have also found that when the rare good day comes, I should TAKE ADVANTAGE!!! Get up and go and do and enjoy! You can’t predict when the bad days will come, maybe they will come because you overdid it, but maybe they’ll come just because. When you have some energy, my advice is to go and do. Don’t be as freakishly cautious as I have been. I am learning. Always learning. And this is one thing that I recently have come to enjoy. Not worrying so much about tomorrow’s consequences and enjoying my life today. Any kind of energy when dealing with these syndromes is pure BLESSING! 🙂

When the really good day strikes, and hopefully you occasionally get those days, go get that room painted, or shop all day, or bake dozens of cookies, or socialize with loved ones, or spring clean, or work on a project, or stay up late, or do whatever it is that you dream of having the energy to do! Enjoy it and then when the bad days come you can remind yourself that a good day just might be right around the corner. And that just may be the only thing that can get you through your day!

Blessings, friends!

-Ann

Just a note…

No Tuesday Tip today! It’s spring break here in Florida and my kids and I spent the morning at the beach and I am looking forward to a dinner date with my husband tonight. I’m having good energy this week, so I am taking the time to invest in my family!  I hope you’ll understand!

II Thessalonians 3:16 Now may the Lord of peace Himself give you peace always in every way. The Lord be with you all.

Love, prayers, and hugs to you all! – Ann

P.S.  If you need a fun, pick me up type song that will bring a smile to your face, listen to this. My daughter and I have fun singing this in the car together! 🙂
Hold Me by Jamie Grace

Tuesday Tip – Finding Support

This is my precious family – all of them!  What a blessing to have this many people in my life who love and support me!  I am blessed! (and exhausted!) Someone commented to me that we look like “the perfect” family.  Well, let me just tell you that we stood there and took 55 photos in this same spot and only ONE of them turned out! 🙂  Does that tell you anything?  And if you need any more assurance that we are not the perfect family you can go read my husband’s humorous blog stuffboysdo.com.

But as imperfect as we are, I love them all so much and I am so thankful! I don’t take for granted that I have people in my life that will love and support me through all the valleys of life.  It is a gift that I treasure.  I cannot leave out my parents who are a HUGE support system for me as I raise five children and struggle with my health.  I am so thankful for all their love and support.  I often wonder what people with cfs or fibromyalgia do when they don’t have that support system in their lives.  Maybe some of you fit in that category.

I don’t believe I have any great words of wisdom on the subject, I just want to make a point that a support system is necessary.  If you have cfs or fibromyalgia, you need or will need people in your life to support you through the very tough times.  We know that God’s grace is all sufficient through all of life’s trials, but I believe that He uses others to help us along the way.  You may ask, how do I find support if I don’t have any?  or I’ve tried, but no one really understands.  Here’s just a few things that come to mind.  I hope it is useful to you today.

1.  Pray about it.   I once spent years praying that God would bring me a friend that could understand me just the way I am.  Illness and all.  I said YEARS!  And in His time, He brought me just the person I needed.

2.  Seek it.  Investing in relationships is hard.  It takes a lot of energy and sometimes it just doesn’t work out and that can be discouraging.  A man who has friends must himself be friendly…(Prov. 18:24)  I think the best support comes from people who can relate to what you are going through – someone who perhaps has an illness as well, a compassionate friend from church, a person from a support group, an online friend that has fibro, a family member who loves you unconditionally and wants to help.  You have to proactively seek these people out.

3.  You need the outlet.  Having someone who can help you physically is a huge blessing, but more than that, I think most of us just need a place of understanding.  A safe, soft relationship where you can vent, cry, pray, and be understood.  I believe that having that outlet helps with the stress which ultimately helps with wellness.

4.  Fight discouragement.  I’ve read on numerous social networking sites that so many of you struggle with family members not being supportive and just down right not believing you.  WOW!  That has got to be so hard and so discouraging!  Fear not, for I am with you; be not dismayed, for I am your God. I will strengthen you, yes, I will help you, I will uphold you with My righteous right hand.’ ( Isaiah 41:10)

5.  Lean on the Lord.  …But there is a friend who sticks closer than a brother.
(Prov. 18:24)
  God has promised to always be there for us.  We can always call on Him in our hour of need.  Even when we don’t feel His presence, He is there, and we need to cling to His promise.  Be strong and of good courage, do not fear nor be afraid of them; for the Lord your God, He is the One who goes with you. He will not leave you nor forsake you.
(Deuteronomy 31:6)


I pray you have found a support person(s) for your journey of illness.  If not, keep asking the Lord to bring that special person to you.  With or without earthly support, our greatest help comes from our Lord.  I will lift up my eyes to the hills, From whence comes my help? My help comes from the Lord, Who made heaven and earth. (Psalm 121:1-2)

Tuesday Tip – What Have You Tried?

Given that both fibromyalgia and chronic fatigue syndrome do not yet have a known cause or standard treatment, there have been a variety of so called “cures” and “no fail treatments” that have emerged over the years.  I am a believer in staying up to date on the latest research and trying new things to help alleviate symptoms, but if each of us tried all the latest fads and ideas for treatment that is ALL we would be doing.  It would be exhausting.  So, this post is not necessarily a tip, but a way to share with you what I have tried or thought about trying.  I’m not talking about certain meds or supplements, but actual treatment plans that claim healing.  I would love for you to share with me what theories you have bought into over the years that promised relief.  Some of you may have even tried some CRAZY stuff, that you can laugh about now! 🙂  Or perhaps you’ve found something that works!  I’d love to hear it!

1. Something I tried.
Have any of you heard of the guaifenesin protocol by Dr. St. Amand?  It is a pretty convincing sounding treatment.  There are hundreds of testimonies of people who have used the treatment and have found what they call a “reversal of symptoms”.  If you’ve never heard of it or would like to read more about it you can visit their website. fibromyalgiatreatment.com/GuaiProtocol Dr. St. Amand theorizes that fibromyalgia bodies cannot rid itself of phosphates, so they build up in body tissue and cause pain, fatigue, and all our other symptoms.  Taking guaifenesin supposedly helps our kidneys get rid of these phosphates and reverses the damaging effects of fibromyalgia.

Anyway, my mom and I tried this treatment for over 2 years back in the 1990’s.  We were very diligent in following the guidelines and rules (there are many!), but never found the “cure” that so many have claimed.  I’m not calling it a hoax by any means.  If it has helped hundreds maybe thousands of people with fibro and cfs, then I am all for it.  It just didn’t work for me.  It is not an expensive treatment and they are in process of trying to get some published studies done to prove their theory.  If that happens, I will be tempted to try it again.  Any of my readers have any experience with this protocol?

2. Something I strongly considered trying.
There are so many claims out there to cure fibro.  Of course, you have to be skeptical and wary of those who are seeking to take your money, but what about those that don’t want your money, they just want to help?  A few years ago I visited this website, fibromyalgiafullresolution.com and was fascinated with what I read.  This man is a massage therapist who uses a systematized protocol of frequent, neuromuscular massage to cure fibro.  Claiming something about the spine and soft tissues and the connections to our brain and our muscles.  It’s all pretty scientific sounding, but made sense when I read about it.  He is working with a retired Doctor who has agreed to be his credibility and sounding board for this treatment.

I was so intrigued by his ideas and website that I sent him some emails and inquired about his treatments.  I ended up paying him for one hour of his time and we chatted over the phone.  (He is in Ohio and I am in Florida.)  He was easy to talk to and answered my exhaustive list of questions.   Could he be on to something here?  He has many testimonies that claim they are “cured”.  His per hour treatment cost was very reasonable, but I would have to travel to see him for an extended period of time.  He’s clearly not in it for the money, so he just wants to help people.  I strongly considered leaving my family for two weeks to go see him, but ultimately decided against it.  I concluded that if his theory carries any weight, his plan for a published study and a book would eventually emerge.  If and when that happens, then I’ll buy into it.   It was worth looking into and I’ll keep my eyes out for that study!

3.  Something I would like to try.
My latest interest is in the Fibromyalgia and Fatigue Treatment Centers that are popping up all over the country.  Have you heard of these?  Here’s a link in case you are interested in reading about them. www.fibroandfatigue.com  (Dr. Teitelbaum is one of my favorite resources for fibro and he is involved with this organization. His website is endfatigue.com.) They claim that by doing all kinds of blood work, surveys and testing that they can tailor a treatment just for you that will reduce your symptoms, and maybe even eliminate them.  They believe that every case of fibro and cfs is different and can be caused by different things, so you need an individualized plan.  Again, hundreds of testimonials claiming that this works.  If I had the money and a center near me, I believe I would give this a try.  Closest one to me is in Atlanta and that is a five hour drive and raising five kids is not cheap – I don’t happen to have an extra $5000 laying around! 🙂  This is definitely one I am keeping on my radar though.  Maybe someday…

When you’ve been ill for as long as I have, you wake up everyday hoping that sometime in my life span they will discover the cause and cure.  In the mean time, I let myself daydream that one of these claims for improvement in quality of life will actually work.  Which ones should I try? or invest in?

I’m curious to know, if any of you have tried or read about these and other treatments that claim to “cure” you of fibromyalgia.  There is a ton of stuff out there if you dig around long enough.  Anyone want to share their experience?

Tuesday Tip – Deep Breathing, Part 2

For those of you who don’t know me, I am a classical singer. I have a Bachelor’s Degree in Music Education and Master’s Degree in Vocal Performance. I enjoy singing professionally from time to time, but mostly I sing because it is what I love and have been called to do. It is a big part of who I am. My symptoms of cfs showed up very abruptly during my senior year of college. I was a voice major and a large part of my graduation requirements involved a lot of singing. Classical singing requires a tremendous amount of energy and is a delicate balance between relaxation and energy. For the non-singer it is very difficult to understand how someone could possibly study breath for years, but trust me it is the foundation of all good singing and I spent ten years studying it!

Last week I shared with you in Deep Breathing, Part 1 how deep, slow abdominal breathing has helped me control my cfs and fibro symptoms. This week I want to share with you how I made that discovery. During my last semester of college, the one where I was sooooooo sick, I was required to participate in a college wide competition for classical voice. I had been sick for about 4 months and was barley able to make it to my classes, but I pressed on because I just wanted to make it to graduation. I made it through the first rounds of competition and moved on to the finals which was a concert that was open to the public. I can remember that day so vividly. I was so sick. I had nothing to give. I went to the college practice room to “warm-up” and I laid down on the floor and just cried. I did not have one ounce of energy to give to this competition. For me, it was not even about winning, I just wanted to go back to bed. I was so exhausted and ill. I forced my body to go through the motions of “warming up” which included several breathing exercises. Between crying, laying on the floor, and squeaking out a few vocal warm-ups, I managed to sing my aria. All I wanted to do was get it over with. I went back stage and ran into the Dean of Communicative Arts. He took one look at me and said, “What’s wrong?” All I could muster was an “I don’t fell well” and a bunch of tears. I was miserable physically. I just wanted to go home.

Over the years as I have become physically better, and as more opportunities became available to sing, I started to discover a phenomenon kind of by accident. As I would practice voice, which included many breathing exercises, I would come away from rehearsals feeling better. I couldn’t quite figure it out because singing takes so much of my energy, I expected to walk out of rehearsals exhausted, but instead I felt energized. I guess you could argue that I was doing something I love so that created some adrenaline and positive energy, but the phenomenon kept happening. If I committed to a singing engagement, then I committed to rehearsal regardless of how I felt physically and many times I felt AWFUL, but pushed past it to rehearse. And when I did, I almost always felt better. One day, I sat down and analyzed it. My conclusion was that the deep abdominal breathing over and over through the course of a rehearsal was what was fueling my energy. What a great discovery! So, I put it to the test and started deep abdominal or diaphragmatic (what we call it in singing) breathing exercises in times of distress without the actual singing and it worked!

I have been using diaphragmatic breathing for years. It helps relieve stress, both physical and emotional. It helps me through anxiety and vertigo issues. When I am at my breaking point in the day, I use it to refocus my energy – it’s great when used in combination with prayer and meditation! As I said in my last post, it will not cure you or fix your pain, but it is another tool to add to the arsenal when you battle your daily symptoms. Here is the link again for a video on how to accomplish deep breathing form a yoga perspective. I hope you find it to be a useful tool for you too!

And by the way…I WON that competition! 🙂

*Trying these exercises for too long or without proper technique could result in hyperventiilation.  Please proceed cautiously! And read my policy page!

Tuesday Tip – Deep Breathing, Part 1

I use deep, abdominal breathing as part of my routine to help control my fibromyalgia and cfs symptoms. I wasn’t quite sure how to explain it in a blog post so, I googled deep breathing and discovered an abundance of information floating out there in cyberspace. The majority of the articles I found, explain how beneficial deep breathing is for overall health and wellness, not just for the ill, but for everyone.

Breathing techniques can be used for stress relief, anxiety reduction, pain reduction, relaxation, clearer thinking, and general health improvement. Breathing is a natural thing we all do everyday without thinking about, but learning to utilize deep breathing can bring many health benefits. It is a very easy thing to learn that doesn’t take much time to actually do and it has tremendous benefits for both physical and emotional health. It is especially good for controlling pain and anxiety, something people with fibro and cfs often struggle with.

Whenever I feel the downward spiral, you know that feeling that invades your body when you’ve overdone it or are about to head into a flare. Or when you’ve hit the wall for the day, but you still have things left to do. In these moments, I instinctively lay down and start deep, abdominal breathing. It is something I have done for years, not because I researched it, but just because I know it works. I have a personal story to share with you, but you’ll have to wait until next Tuesday to hear it. (I didn’t want to make this post too long!) Next week, I’ll share my personal experiences with deep breathing and how I discovered “by accident” that it really helps me! Stay tuned! 🙂

Here are a few links that I found to help educate you on abdominal or belly breathing. If this interests you, these links would be a good place to start. I am not a fan of yoga, it moves too slowly for me, but I have found that these two yoga videos explain the deep abdominal breath very simply. This is basically what I do. Lie down. Close my eyes. Consciously relax every muscle in the body. And do long, slow abdominal breathing. It is calming. It will often bring energy and allow my body to move past “crisis mode”.
Belly Breathing Technique
Belly Breath

If you want to read about the health benefits of deep breathing, these two articles are good.
http://www.onepowerfulword.com/2010/10/18-benefits-of-deep-breathing-and-how.html

http://www.womentowomen.com/fatigueandstress/deepbreathing.aspx

Deep breathing is not a cure, it’s not going to make you better, but it is another tool that you can use for symptom relief. Blessings to all of you as you continue this journey! – Ann

*Trying these exercises for too long or without proper education could result in hyperventiilation.  Please proceed cautiously! And read my policy page!

Update: If you want to read Deep Breathing, Part 2 go here.

Tuesday Tip – Staying Warm

I like to be warm. I am “cold blooded” by nature and I hate the shivery, cold feeling. It ties my muscles all up in knots.  I am fortunate to live in Florida where cold weather is for a very short season and it rarely gets miserably cold. Many people with fibromyalgia have said that weather affects their pain. Humidity, barometric pressure, rain, storm fronts, COLD, etc… I can’t say that I have seen a weather pattern with my pain, except for the cold weather. When it is bitter cold outside, my aches and pains are worse. I just don’t like to be cold.

Some things that I do to stay warm:

1. I’ve told you this before, but I love long, HOT showers. There has to be a lot of water pressure or it’s kind of pointless for me. I use the water pressure and the hot water to loosen up tight, painful muscles in my neck, shoulders, and back. (I am not a bath type person, but I hear that warm or hot baths with some Epsom salt is really nice! 🙂 Sheds toxins and lessens pain.)

2. A rice heat pack – you can read my thoughts about that from another blog post. I am sure a heating pad works very similar to a rice pack, but I have not tried it.

3. My feet are always cold. I love cozy, colorful, warm, fuzzy socks to wear around the house and keep my feet toasty warm in the winter. And some super soft slippers! I also keep lots of throw blankets laying around the house to use when I’m watching TV or cuddling with the kiddos.

4.  I love to drink hot tea!  (Maybe for you, it’s coffee.)

5. I recently read a very interesting article that Dr. Teitelbaum wrote about a study among fibro patients. They used wool clothing and bedding to keep fibromyalgia pain levels down during the winter. You can read that article here. I find it fascinating, although I have not tried it – wool and Florida probably don’t mix well. 🙂 But perhaps some of you northerners would benefit. It’s worth a read.

It’s winter!!! Time to keep your body warm and see if it reduces your pain levels during the cold season! Anyone else have any great ideas to lessen pain during bad weather?

Tuesday Tip – Massage at Home

I like massage. My fibromyalgia pain often feels like my muscles are being compressed in a vice or pulled so tight that touching them will snap them in half. Massage brings GREAT relief to me when I am in pain. The relief doesn’t last, it’s only temporary. I have not found any long term benefits to massage, but in the painful moments, massage brings me relief. Many people with fibromyalgia do not enjoy massage because it hurts. Completely understandable. If that is you, then perhaps this tip is not for you. Although massage does hurt in the moment, I feel like it is a good hurt. It is releasing some of the tension, knots, and pain by increasing blood flow, relaxation, and flexibility. I always feel better after a massage by a massage therapist. I am a mother to five kids, so if nothing else, it brings relaxation! 🙂 But it truly does bring pain relief too. Continue reading

Tuesday Tip – The Spoon Theory

“The Spoon Theory” was written by Christine Miserandino and is a wonderful tool to help healthy people better understand what it is like to have a chronic illness. Christine suffers from Lupus, but her explanation could very well be used for Fibromyalgia or Chronic Fatigue Syndrome.

I first read the spoon theory years ago and had forgotten about it until recently and went back to re-read it. I just love how she paints a simple, understandable picture of what we go through on a daily basis. It has become a favorite story for people all over the world suffering from chronic illness. If you haven’t read it, PLEASE take the time to read it. It is a little long, but the really great parts are at the end. It is worth your time! You will be nodding your head in agreement!

I am making this my Tuesday Tip because this is a great explanation for those in your life that don’t understand what you are going through. Hopefully, you’ll be able to use this story with your friends and loved ones to help find understanding and support.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

Enjoy the read – then come back and tell me what you think!

 

Tuesday Tip – Vitamins and Natural Supplements

I am very sensitive to most prescription medications, so I prefer to seek out answers that involve vitamins, natural supplements, or lifestyle choices. I often find the meds to have worse side effects than the original ailment. Have you read the warnings that come with those things? 🙂 I am not against prescription meds and I know that there is a need for them – they serve a great purpose, but if I can avoid them, I will. I am fortunate that over the counter pain relievers work for me. I know that is not the case for everyone and stronger pain relief is needed. Like I’ve said before, everyone’s journey is different.

I am not going to write about all the suggested vitamins and natural supplements that have potential to help fibro and/or cfs – that’s what search engines are for! 🙂 There is a ton of info out there! This blog post is simply to encourage you by sharing that I HAVE found success with vitamins and natural supplements and I want to encourage Continue reading