Fibromyalgia and Weight Loss

If you suffer from fibromyalgia, there is a good possibility you’ve noticed managing your weight is more difficult than it once was.   Well, for me, I’ve never really managed my weight.  I’ve been overweight since I was 3 or 4, however, in my adult years I have lost and gained the same weight over and over again.

This has been especially difficult in the past 15 years I have had fibromyalgia.  Today I read an article on everydayhealth.com which stated,“Fibromyalgia patients have a 25% lower metabolism, on average, than someone without fibromyalgia of the same age and body weight.”  That is aprox 500 calories a day on average we are not burning off.

In addition to the lowered metabolism, the article states, “When you have fibromyalgia, the appetite-signaling hormone leptin may be out of sync. That sends inaccurate hunger messages to the brain, making you eat more”.

Then there is the medication we are prescribed, many of which list increased appetite and weight gain as side effects.

So, we hurt all over ALL of the time, sometimes to the point we cannot function at all, we have lower metabolisms, and are more prone to have severe food cravings.  What is a person to do?

This is where I am, right now, today.  My husband and I started a weight loss journey at the first of the month, both of us with some success.  Then I started having severe symptoms I don’t recall having before.

1. Headaches.  I rarely have headaches, typically it is my neck and jaws that hurt worse, but now severe headaches that would not allow me to sleep, and made me sick.
2. Fatigue.  With fibro comes fatigue often so severe you cannot get out of bed.  This is a norm for me, however, the fatigue became much wore and more frequent.
3. Feeling dizzy.  Fibro can make us unsteady, and the medications we often take do as well, but this was a new dizzy, like I am about to pass out dizzy.
4. Low blood sugar.  I started taking my blood sugar and noticed it would dip down into the 60’s (possibly causing the headaches, and dizziness) – but when I was dizzy or light headed I would take my blood sugar and it would be normal.
5. Severe cravings for carbs – bread – pizza – noodles, etc.

These prompted me to start researching what to do.  A few years ago I lost 100 lbs. by doing a low carb diet with exercise.  While I did have fibro I also was taking Norco (Hydrocodone/Tylenol).  The Norco gave me a lot of energy, eased my pain, and as a bonus it killed my appetite.  So why did I stop taking it?  Well, I felt a lot of pressure from my family and friends that it was too strong, too addictive, and dangerous.  The news and internet concurred, so I stopped taking the Norco.

So now, I’ve gained back half the weight, and want to lose it again.  For the past four weeks I have reduced calories, carbs, cut out sugar, only ate out a few times, and sadly the weight is not moving as well as I would like.  I have lost 10 lbs, but that is not how quickly I lost it before (only a few years ago).  I know the difference is the exercise I was doing.  Without the medication my bad pain days have skyrocketed, and with the reduction in calories my energy is even lower than normal.

So what is the answer?  I am trying to find out.  So, for now, I have cut out processed foods, added back some complex carbs, and am following a mostly vegetarian diet minus the bread.

Unexpected Therapy

Living with fibromyalgia can rob you of your hobbies, friendships, connections, and can leave you feeling a big disconnect from the rest of the world.  There are days, even weeks, that I do not leave the house.

One of the joys of my life has been reading, and as odd as it may sound, sometimes the pain of fibro makes it difficult to hold a book, hold my attention, or my vision too blurry to see the words.    Audiobooks to the rescue!   I have used audiobooks to help distract me from pain, anxiety, depression, and still be able to enjoy one of the great loves of my life – books.

Uncommon Type, by Tom Hanks, is one audiobook I just finished, and played over and over again.  I loved the book so much it inspired me to buy my own typewriter.  (The chapter titled, “These are the meditations of my heart” in particular).

I had some concerns.  With fibromyalgia I have a lot of pain in my arms, elbows, hands, wrists, neck, and shoulders.  The first thing my husband said was, “That thing is gonna wear you out.”  A good point, I thought.  After some research I found one that seemed to fit my needs, and when it arrived it was magic.  It had been decades since I touched a typewriter, and the beauty of the instrument itself impressed me.

In preparation for the arrival of the typewriter, my husband took me to purchase some good paper.  I settled on a linen that is often used for old fashioned resumes.  It’s off white color seemed to fit perfectly.

The first time I rolled two pieces of that linen paper into the machine I was hooked.  Everything about the typewriter was made to please.  The touch of the keys, the sounds, the minimalism of it.  No flashing advertisements would “pop-up” to annoy me, no loud unwanted videos would distract.  Paper and thoughts are all that are necessary.  There is something very cathartic about it that is difficult to explain.

The concerns about being able to use it due to my pain were lessened because I use it when I am able to, and even just a few minutes,  produces such a sense of peace, as though all is right with the world.  I have written notes to family, and friends that I haven’t seen in a long time due to my illness.  Just a few lines takes only minutes, and the connections I had lost due to illness and the chaos of social media are once again alive.

Each keystroke gives a sense of hope, and a tool that allows me to express myself while the symptoms of the chronic illness loom.  I gave my husband his first ever typed love letter, a typed birthday wish, a thank you, and just because notes.  Sure, I still have days that I cannot function at all.  The pain and fatigue rob me of hours every day.  Just seeing the typewriter on the desk makes me happy knowing it is there when I am ready and able to reconnect.

Cecilia Grimes

 

Insomnia and Fibromyalgia

Listening to the gentle sounds of my husband and doggies snoring is the best part of insomnia.  I’ve suffered with insomnia for most of my life, and have found a few things that help me deal with it.

1.  Podcasts/Audiobooks – most experts would probably say that using electronic devices at bedtime is wrong, however, when you have a chronic illness like fibromyalgia podcasts or audiobooks have helped my mind settle, and provides distraction from pain and discomfort.
2. Dr. Jeffery Thompson – I absolutely swear by Dr. Jeffery Thompson’s Sleep & Rejuvenation Sounds for Sleep.  This is my favorite, but there are dozens to choose from.
3. Get up – If it’s been an hour it helps me to get up and do something enjoyable and relaxing for a while.  YouTube, Pinterest, loving on a pet, writing.  Laying hurts, anxiety looms, my mind runs, just doing something small for 30 minutes or so can help.
4. Aromatherapy – I love essential oils.  There are some great blends that help sleep.   Lavender is my favorite for night-time.
5. Meditation – There are several apps I use for meditation.  My favorites right now are Calm, and Stop, Breathe, and Think.
6. Listening to my body – This one is difficult for me, especially when I have worked for years to try to ignore the pain and other symptoms of Fibro.  When I truly focus on where I am holding tension, and try to relax those areas it helps.  When I was a little girl I had a Cricket doll who talked through cassette tapes.  On the night-time cassette she taught me to relax each part of my body, from head to toes, going through each area and it still helps.
7. Medication – Not a fan of sleeping meds, so what I mean by medication is to have a night-time routine for your meds.  When I do not take mine, I don’t sleep.

I hope these help anyone suffering from insomnia, or chronic illness.  Let me know what works for you!

-Cecilia Grimes

Fibro Flare Faves

When symptoms flare up, or just dealing with the day to day pain, it’s a good idea to have a plan of attack!  These are some of my tried and true staples for dealing with chronic fibromyalgia symptoms.  I am not sponsored by anyone, these are truly items I use.  Let me know what your favorites are!

This neck wrap is great if you are close to an outlet, and has a magnetic closure to keep it wrapped around your neck.  It is also super soft.

Sunbeam Renue Heat Therapy Neck and Shoulder Wrap Heating Pad with Moist/Dry Heat

I’ve owned several of this type of neck wrap.  It’s been sold under different brands.  What I love about it is that you microwave it, and wear it anywhere.  I use this absolutely every day.  It is super soft, and sits on my shoulders without sliding around.  When other trigger points are flaring I will place this on those areas for comfort as well.  It works really well if you are laying on your side and place it on your hip.

Heated Microwaveable Neck and Shoulder Wrap

 

I’ve used this lotion for years.  It smells better, and is lighter than other pain relief lotions and creams, and it is all natural.

Two Old Goats lotion

We’ve owned Temperpedic, Sleep Number, and traditional mattresses.  None compare to our Purple mattress.   We did not care for the pillows (too heavy and floppy), or the sheets (felt like a pair of old tights), but the mattress is exceptional.  It helps with those pressure points, and just feels amazing.  You also get 100 nights free.  Really not too bad priced, and worth every penny.

The Purple Mattress

This one may look strange, but it is AWESOME for massaging knots and trigger points.  You control the pressure, and it is easier to use than it looks (comes with a book).  I found mine in a heath food store years ago, and absolutely love it.

Body Back Buddy Trigger Point Therapy

This is my favorite bath soak for all over pain.  The Eucalyptus & Spearmint is my favorite, but there are others.  It’s very inexpensive as well!

Dr Teal’s Epsom Salt Soaking Solution

I’ve gone through a LOT of heated throws and blankets through the years.  This one is my favorite because of the texture, and we have 4 or 5 of them.   I wish it lasted longer, but to be honest as much as I use it one season is reasonable for the price.  Like most heated blankets once your wash them they never seem to work as well, so I try to keep it clean and put away when not in use.

Microplush Electric Extra Long Heated Throw

I’ve tried a LOT of different pillows to help with my severe neck and shoulder pain.  This one is the best I’ve tried.  It is expensive, but when you hurt you do what you gotta do.  The support this one offers is much better than others of the same shape.  It’s that Temperpedic material that makes the difference.

Tempur-Pedic Medium Neck Pillow

This is my favorite B12 to help fight fatigue.  It’s inexpensive and effective.

Spring Valley Vitamin B12

My Bose noise cancelling headphones are about 6 years old, but work just like the day I bought them.  When that hypersensitivity to sound kicks in, or you need to listen to something soothing these are amazing.

Bose QuietComfort 25 Acoustic Noise Cancelling Headphones Wired

I get asked about these shoes all the time.  Mine are a few years old – this is the newer version.  It’s hard to find the comfort, durability, and ease of use without looking like great-grandma’s orthotics.  These are outstanding for taking the pressure off your joints, while still looking cute.

Lotus Mary Jane J-41

 

Another shoe that I wore for years is the Merrell Encore.  What I love about them is the ease of use, the grips on the sole, the comfort, and the shock absorption.  When I worked, it was on concrete for 10+ hours a day.  These were the only ones that helped me stay upright.

Merrell Encore

 

In the beginning there was pain.

Those of us with Fibromyalgia often note the beginning as our date of diagnosis (for me this would be 2003).  This is not the beginning, however, as getting to the actual diagnosis can take years.  Looking back I now understand that symptoms of Fibromyalgia began in my childhood.

The first symptom I recall is hypersensitivity to sound.  I was raised in a quiet family.    There were rarely any other children around to prepare me for the assault of noise in school.  The anticipation of school was nearly too much for me, and it was my favorite game to play.  They bought me a school desk, and book bag at a garage sale.  My favorite toy was a speak and spell.  Educational programming on the television was constantly on, typically in the form of either Sesame Street or Pinwheel.  (If you aren’t an 80’s child, you may not remember Pinwheel, but my grandfather insists that as a Neilson ratings family I single-handedly kept the show on Nickelodeon).  When the first day of kindergarten finally came I was beyond excited.  Everything was great except when we were sent to recess, or I would ride the bus home.  The noise was nauseating.

We went to church every Sunday, and as a toddler I would stand in the pew and tell the minister to “stop hollering”!  When the organist would start playing hymns I would cover my ears, lay my head in someones lap, or have to leave the sanctuary.  The sound was too much to bear.   This continued into my teenage years, well except for telling the minister to be quiet.  Today if I enter a church with an organ I literally pray it will not be played.  This is unfortunate because I love music.

Hypersensitivity to sound continued to elevate through the years.  This proved to be difficult in my job of 18 years as it could be a very noisy environment.  It also affected a relationship that I was in with a musically oriented individual who told me that the sound would not bother me if I enjoyed the music.  Of course that is not the case.  Hypersensitivity to sound also affects my anxiety, pain, and fatigue.

Hypersensitivity to sound can wax and wane with fibromyalgia.  During a flare up, this can be very difficult to manage.  For me I find being in a quiet house with my noise cancelling headphones helps.

The next symptoms I recall are anxiety and depression.   At age 9 my parents were called to the school because I cried every day, but would never tell the teacher why.  I didn’t know why.  I knew that it felt like there was a constant knot in my stomach, an overwhelming sadness hovering over me, and the feeling of being isolated.  At the age of 15 I had my first serious thoughts of suicide, but I did not tell anyone.  I had gathered all the pills I could find around the house, and sat them on the dining room table.  It was time to make the pain, sadness, anxiety, depression, isolation go away.  Thoughts of my family waved through my mind.  I sobbed, and put the pills away.  It wasn’t until 20 years later that I would actually take those steps.

In my early 20’s I saw several doctors about my anxiety and depression progressing, and began the trial and error of antidepressants.  This trial and error went on for 15 years, and during that time I worked 50+ hours a week at a stressful job and rarely told my supervisors what I was going through.  I was afraid they would see it as a weakness or liability and my job would be in jeopardy.

–Lexapro was first.  Lexapro made me sweat, irritable, eliminated libido, and I began having night terrors for the first time of my life.  I would literally sit straight up in bed screaming.

–Effexor was next.  Effexor also made me sweat, eliminated libido, and made me very tired.

–Zoloft was added to the Effexor.  If you think this is unusual, I’ve been told that many times.  However, the combination of Zoloft and Effexor did help for a while, at least with the depression.  I still had side effects.

–Savella – A supposed new miracle for Fibromyalgia that several people I knew swore by. With Savella I had sweating, palpitations, insomnia, and increased depression.

–Lyrica – While Lyrica seemed to help with some of the fibro issues, I began to gain weight really quickly, and continued to have palpitations (even after seeing a cardiologist who said it was either medicinal or stress related).

–Cymbalta – This is what I am currently taking 120mg/day.  (2 doses at 60mg each).  Side effects:  dry mouth, fatigue, diarrhea (could be the IBS), and increased urination.

–Xanax – What none of these drugs addressed was my crippling anxiety.  Several of them are supposed to help, the suffering continued.  Finally in 2015 I was prescribed Xanax.  I now take 2mg a day.   Originally I was prescribed .25mg when necessary.  Then .50mg twice a day.  This kept me on a roller coaster.  Now I’m on a delayed released dose of 2mg, and it is much better.  I still have anxiety, agoraphobia, panic attacks, social anxiety, but Xanax helps me cope with them.

In addition to medication I have seen therapists, psychologists, psychiatrists, and am currently doing cognitive behavioral therapy.

Sleep problems started around the same time.  I would swear to my parents the crickets were keeping me awake, but it wasn’t the crickets.  I had insomnia, and sleep disturbance.  This I would later learn played into the pain and fatigue to come.

Pain and fatigue began to elevate at age 11.  I remember feeling sore all over even though I had not done anything taxing.  Family would comment that I had a “tender head”, and that everything was “ow” with me.   The pain was especially bad on the sides of my knees, base of the head, hands, wrists, elbows, my neck, and shoulders.  Soon, I developed TMJ, and had to be fitted with a guard that I used in school and at night.  Grinding and clenching my teeth has caused tooth loss, headaches, and damage to my jaw.  It was also at age 11 that I started menstruating, and had heavy painful periods until my 30’s.

It always seemed that everything took so much effort.  Most forms of exercise were just too much.  I spent most of my childhood indoors reading.  My parents encouraged me to exercise, and attempts were made.  I would ride my bike, but quickly tire and hurt and have to come in.  We would walk together as a family, and I would lag behind.  Everything seemed exhausting, even as a young child.  Everything hurt, but I didn’t understand why, or how to relay what I was going through to my family.

As the years progressed, so did the pain and fatigue.  For my entire 20’s all I did was work and sleep.  When I finally had a diagnosis the trial and error of pain meds began.  

It is important to understand.  I am in constant pain.  Every minute of every day.  The level of pain differs moment to moment.  All of these medications I have taken only help minimize it, nothing takes it away.

Flexeril – great for relaxing muscles, making you sleepy, and helping with muscle spasms.  What it does not do is help my pain.  I have taken flexeril for about 15 years as needed, usually at bedtime.

Neurontin – helps with nerve pain, but overall it did not provide much relief for me.

Tramadol – by far the best with the least side effects for me.  It does make me drowsy so it is my go to for night-time pain.

Hydrocodone – good and bad.  It gave me energy, alleviated my pain, helped me lose weight, but it is short lived, and extremely addictive.  This drug helped me more than any other, but the dangers and current climate of people abusing the drug made me decide to take myself off it.

Ibuprofen/tylenol – my daytime combo – 2 Advil, 2 Tylenol.  Depending on the level of pain I am in, I may take this combination 2-4 times a day.  Yes, I know that is a lot, but we are talking about functioning at all, or not at all.  Sometimes even all of this together doesn’t allow me to function, but you do what you can.

Chronic Anemia is another symptom that I was actually born with.  I have had it my entire life, and have had to get iron infusions, and take medication.  This also causes pain , fatigue, and issues with cognitive function.

IBS In my early 20’s I began having severe gastrointestinal issues.  I saw several doctors who would tell me to change my diet, eat more fiber, keep a journal, etc.  There were times it was so bad I would go the hospital.  It wasn’t until 10 years after my initial fibromyalgia diagnosis that my doctor said it was most likely IBS, which often coincides with fibro.  Basically, another symptom to deal with the best I could.

Finally in 2003 my fight to just deal with all the symptoms became too much, and was affecting my work.  I saw yet another doctor, and laid everything out for him.  After more tests that all came back normal (except anemia, and slightly elevated white blood count) he diagnosed me with Fibromyalgia.

So, just like so many others with Fibromyalgia I have had dozens of tests, prescriptions, doctors, lack of understanding from coworkers, family, significant others, friends.  This is just the tip of the iceberg, my friends.  God is GOOD!  It could be worse, and I am thankful for every day.  – Cecilia Grimes