I’m here to tell you that there is hope for fibromyalgia, and the reason I know that, is because I have been living with fibromyalgia for over 36 years now, which is all of my adult life, making me 56 years of age.

What causes Fibromyalgia?  Virus ‘infection’, severe shock ‘physical or emotional’.

It all began 36 years ago when I contracted Mononucleosis.   I was 20 years old.  I remember it vividly because I had to drop out of my first year of college during the second semester as I was ill for over a three-month period.  “Mono”, as it was referred to back in the 70’s, is a common, acute, usually self-limited infectious disease caused by the Epstein-Barr virus, characterized by fever, membranous pharyngitis, lymph node and splenic enlargement, lymphocyte proliferation, and the presence of atypical lymphocytes, and of a transient heterophile and a persistent Epstein-Barr virus antibody response.  Potential complications include hepatitis and encephalomeningitis.  It affects primarily adolescents and young adults, being spread by saliva transfer and possibly other modes; in children the infection is largely subclinical.  Called also glandular fever, Filatov’s disease, kissing disease, and Pfeiffer’s disease.  Chronic mononucleosis, which is chronic fatigue syndrome, or CFS, often coexists’ with Fibromyalgia (FM), and these illnesses affect millions of Americans. 

The only information I could get my hands on back in the early 1970’s was from the Arthritis Foundation and that was very little, at best.  The symptoms can vary amongst men, women and children, and commonly include severe fatigue, disturbance in sleep, aching of the muscles, cognitive problems (’brain fog’), and recurrent infections.  I believe when I was in my early 20’s that I had Chronic Fatigue Syndrome due to the fatigue, sore throat, low-grade fever, and muscle aches that I would experience about once a month. 

Later on in my life, I gradually stopped having the sore throats and low-grade fevers, but continued with the body aches, fatigue, depression and irritable bowel syndrome.  Through all of my adult years though I have had problems with sleep as well as depression.  I always felt like a cat, sleeping with one eye open, waking up to a body that felt like it had just gone to bed, and then having to perform my daily activities with a night of non-refreshing sleep and a full day of activities without any energy to perform them.  Meanwhile, I had a family, husband, and two daughters to take care of, as well as a full-time transcription business, that I had to maintain.  Life was not at its best for me, to say the least, and the depression, which I felt surrounded by, was about to take a toll on my well being.  This is the time in my life where I decided to seek help from a General Practitioner. 

 My General Practitioner, who was thought to be a very good, well-known family doctor, had to process all the information I gave him, the list of symptoms that I had gathered over the years, and he came to the conclusion that I had “Depression”.  He gave me a pamphlet on Depression and told me to read it and prescribed an antidepressant, called Ludiomil, as well as Prozac, and told me to followup with him.  I could not, for the life of me, fathom that all those symptoms that I had was all from depression.  I just couldn’t believe it.  It couldn’t be true.  There had to be some other name for it, some other diagnosis.  I knew I was depressed, and had been for years, but I just could not believe that depression was the answer for all those symptoms.  Thus, the beginning of a long road of antidepressants/pharmaceuticals and guinea pig time. 

I stayed on the Ludiomil for quite a few years, but couldn’t take the Prozac, I had an adverse reaction to it.  Along with the Ludiomil, I was prescribed Xanax, which helped me to sleep, but the sleep I got was not the refreshing kind.  With the combination of Ludiomil and Prozac, I experienced what is known as a “Feeling of  Impending Doom”.  It’s an anxiety attack but with the feeling that something horrible was going to happen but I just didn’t know what that horrible thing was.  I felt like I couldn’t go anywhere or do anything.  If you have never experienced anuthing like this, then you are fortunate, because it is a feeling like no other in my entire life.  I wouldn’t wish it on my own worst enemy.  The chemicals in my brain, altered by the antidepressants, made me have such horrible side effects.  I even had one antidepressant, that every time the phone rang, made me jump out of my skin.  While on these different medications, I continued to work and tried to maintain some normalcy with my life, but being a wife and mother, and running a business, it was a day-to-day battle.  I tried many different supplements for energy, sleep, body aches, etc. and there was one that I was on for quite sometime.  It was called Ultra ATP+.  

Ultra ATP+ is a nutrient that supports the muscles and helps you maintain stamina as well as endurance.  It’s highly effective synergistic combination brings together malic acid, which helps convert fats and sugars into energy, and magnesium hydroxide, which helps promote over 300 reactions in the body for proper muscle function.  Ultra ATP+ provides:  (1).  Vital components for the cells to produce energy.  (2).  Essential minerals for healthy muscle function (including the heart) and (3). Minerals for increased stamina and endurance, while minimizing muscle damage during physical activity.  In other words, when the body burns food it creates ATP molecules, which transport chemical energy within cells for metabolism.  That energy is then used by a multitude of cellular processes throughout your body.  This really helped me, especially when I tried to exercise.  Exercising with fibromyalgia is very difficult to do.  You generally don’t feel like exercising because you’re tired and don’t have the energy, but you won’t get the energy you need if you don’t exercise.  The Ultra ATP+ helped give me stamina so that I could perform my daily activities as well as provide the endurance I needed to exercise.  This supplement can also be found at ProHealth (1-800-366-6056), Monday through Friday, 7:00 A.M. to 5:00 P.M. (PST).  You can also reach them at their website ImmuneSupport.com anytime, day or night.

The antidepressant that was tried next was Zoloft.  In order to wean off of one antidepressant and start taking another required an Endocrinologist.  My Endocrinologist started me on Zoloft, a SSRI (selective serotonin reuptake inhibitor) which helps a person suffering from fibromyalgia to sleep better as well as help with the depression.  The brain of a FM patient doesn’t secrete enough serotonin to allow the proper sleep that one needs to feel refreshed the next morning.  I was slowly weaned off of Ludiomil, while gradually taking the Zoloft to a dose that was good for me, until I was totally weaned from the Ludiomil.  Ludiomil is a tetracyclic antidepressant, which was good at the time, but it was considered one of the older antidepressants and the pharmaceutical companies had come along way with newer antidepressants, like Prozac, Zoloft and Paxil.  I remember starting the Zoloft, it was back in 1987, and feeling a “sense of well being” (after just a couple of days, usually it takes up to 3 weeks before you notice a difference), a feeling that I had not felt for a long time and gradually, without my realizing it, my neck pain began to slowly disappear.  I thought my neck pain was due to my job as a transcriptionist, sitting in the same position in front of a computer all day, typing for 8 to 10 hours a day.  I really didn’t realize that the Zoloft had helped me with my neck pain until years later when a co-worker of mine told me her neck started hurting again after she was taken off of Zoloft and put on one of the newer antidepressants, Wellbutrin.  It dawned on me that that was why my neck had started to feel better.  I hadn’t put the pieces of the puzzle together regarding that because of my “fibro fog.”  Many people with Chronic Fatigue Syndrome and Fibromyalgia experience episodes of unclear thinking or cognitive dysfunction.  They can become forgetful, lose their train of thought, forget words or mix them up.  This is what is popularly called “brain fog” or “fibro fog.”  I did want to mention that Zoloft is also used when treating obsessive-compulsive disorder (OCD), panic disorder, post-traumatic stress disorder, premenstrual dysmorphic disorder (PMDD), and social anxiety disorder.  Zoloft does come in a generic form called sertraline HCI.   

Muscle relaxants were added to the mix.  The first muscle relaxant that I was tried on was Flexeril; this is a muscle relaxant that also reduces pain by increasing CNS levels of two pain-fighting transmitters:  serotonin and norepinephrine.  The major side effects are sedation and dry mouth.  Different doses of Flexeril, or cyclobenzaprine, were evaluated for the treatment of acute muscle spasm in the low back or neck regions to see if a lower dose might be equally beneficial while producing fewer side effects.  5 mg three times daily was just as effective as 10 mg three times a day, and produced a much lower incidence of interolerable daytime sedation.  Cyclobenzaprine was, at the time, commonly prescribed for FMS patients in low doses at bedtime, so it is plausible that small doses could be taken throughout the day to effectively treat severe muscle spasm flare-ups in the back or neck.  I have to say that this worked in the beginning for me, I was able to relax my muscles, especially the ones in my neck, and the Flexeril helped me to fall asleep but after awhile it didn’t seem to be helping much.  I took this muscle relaxant for many years, but was switched to another muscle relaxant called, Soma.  This drug worked for awhile as well but then the newness began to wear off and I was put back on Flexeril.  As I said, I took Flexeril for many years up until my Pain Management Specialist decided that I didn’t need it anymore.  That was just about 2 years ago.  The effects of getting off of Flexeril were little, if any.  It wasn’t a drug that had to be weaned slowly, it was just stopped.  That was one less drug that I had to take and believe me, I didn’t miss it at all. 

Through the process of trying to adjust to my symptoms, I began to realize that I was having neck pain so badly that I would sit and cry just trying to get my job done during the day.  I attributed the pain to the job, as I stated above, and it felt like my head was too heavy for my neck, in that I mean it felt like my neck was incapable of holding my head up.  I didn’t realize until later, many years later, what I was up against.  I tried many different things, using heat on my neck every night after working all day, Motrin or Advil in high doses, which wasn’t good for my stomach, massaging the neck to try to alleviate some of the pain, and anything else I could think of.  I would have taken opioids if I could have, but back in the late 80’s and early 90’s that wasn’t heard of.  I worked full time and I could hardly get through my work week without excruciating pain.  Then after many years of this, a coworker asked if I had ever slept on a contoured pillow.  I had never tried this before but decided it couldn’t make it any worse.  So I bought a Temperpedic contour pillow and made sure I slept on it every night, and I started to see a decrease in my neck pain.  I was able to work at least 3 days a week without pain and then by Thursday I started to realize the pain again, and by Friday, I was back with total neck pain.  I tried to rest as much as possible over the weekend, and that really helped, but if you’re a working wife and mom you know there isn’t much resting on the weekend. 

I remembered reading, in a quarterly Fibromyalgia Network magazine, that 5% of patients with fibromyalgia have what is called Arnold Chiari malformation.  I knew that if this could be the reason for my neck pain, that I would have to be seen by a Neurosurgeon, so I began the long, arduous process of finding a Neurosurgeon, one that specializes in Arnold Chiari malformations. 

Arnold Chiari malformation is a congenital (present at birth) defect in the area of the back of the head where the brain and spinal cord connect.  There are four types of Chiari malformations, including the following: 

Type I:  Commonly goes unnoticed until problems arise in the adolescent or adult years of life.  In this condition, the base of the skull and the upper spinal area are not formed properly. 

Type II:  This is the most common type of Chiari malformation.  In this condition, part of the back of the brain shifts downward through the bottom of the skull area.  Type II Chiari malformations are typically seen in infants who are born with spina bifida, a neurological condition that causes a portion of the spinal cord and the surrounding structures to develop outside, instead of inside, the body.  Type II Chiari malformations can also be associated with a condition known as hydrocephalus.  Hydrocephalus is a condition in which there is an overproduction or lack of absorption of the cerebrospinal fluid (CSF) that is found inside of the ventricles (fluid-filled areas) inside of the brain.  The increased fluid causes the pressure inside of the head to increase and the skull bones to expand to a larger-than-normal appearance. 

Type III:  The back of the brain protrudes out of an opening in the back of the skull area.

Type IV:  The back of the brain fails to develop normally.

Please see ManagingFms.com for continuation of Arnold Chiari Malformation (at the top of my blog in upper righthand corner). 

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