Tag Archive | pain

The BIG Fibromyalgia Diagnosis

So, you went to the doctor and she/he said you have fibromyalgia.  I’m sure your heart sunk.  You probably, like me, thought what now.  My life is over.  I’ll never be the same again.  There goes my quality of life.  You probably did your research online before being diagnosed.  Everyone does.  We usually go in to our doctor’s office with the information and present the disease to them.  I hope that you were given a battery of tests, before slapping a diagnosis on you.  This is a disease of exclusion (the ONE thing I WANT EVERYONE to know and learn).  The doctor should run a battery of tests to exclude anything and everything.  They should be looking for several things like (but not limited too) Lyme’s disease, thyroid issues, arthritis, candida, hormonal issues, etc.  There’s so much that should be ruled out.

So now that diagnosis is made.  For some, it’s relief and some it’s depressing.  Let me assure you that your life is not over because of this diagnosis.  This is just a new way of life.  You are not going to die from this disease.  It is just a shift in the way your going to be living the rest of your life.  It will change how you plan your life from here on out.  Your daily, weekly and monthly activities will change.  You will learn to manage your time and energy.  Some days you will have a ton of energy and pain.  Other days, it will be less.  Please do not use all your energy in one day.  You will pay for it the next.  Spread out activities, like household chores.  Instead of doing all of your housework in one day spread the chores throughout the week.  When planning a family activity, don’t do anything the day before.  Save your energy for friends and family.  It’s a matter of learning to manage energy levels.  Managing energy can help manage the amount of pain you will be in and vice versa.

 

 

My Life’s Story, Part 1

So many times I look at my life and wonder where I would be now if I had never gotten sick?  I am 40 years old now and just never thought my life would have turned out this way.  I’m living with my parents.  I’m single and have no children.  But I have a loyal dog!  I really thought I would make a great mother.  I love kids.  I was never asked to be anyone’s godmother, which really hurt.  I often wondered why no one wanted me to be their child’s godmother.  And I’ve never been a maid of honor.  Why?  I’m not sure.  The closest I ever got was to be a wedding coordinator for my roommates wedding.  That was such an honor.  I got to make sure things went smooth on her wedding day.  It was really fun.  After that, I had thought about becoming a wedding planner.

But after college, I sought out jobs in the counseling industry and took a job where the atmosphere was hostile between staffers and no one was on the same page with the kids in the group home.  It was a hostile work environment because the kids would ask me to do something against the rules and I’d say no.  Then the other staffers would say yes.  It was crazy.  From there, I took a job in the office as a customer service rep.  Then the nightmare started.  I started with my migraines all over again (just like in high school).  I was exhausted and in pain.  I ended up quitting that job because my boss was making it a very difficult place for me to work.  I was being bullied and now a days, that would probably be punishable.  I just didn’t know what to do at the time.  From there I took a few other jobs in the office.  I lost my jobs to my illness. I would work for 2 years and they would end up firing me because I would miss too much work.  It was a repetitive cycle.  Then I decided I would work on my Master’s to find something that I loved to do.  Perhaps that would make life easier.  So I got my Master’s in Human Resources and in Counseling.  I couldn’t do anything with them either.  I found my dream job at a DUI facility.  I was running group sessions for clients who were convicted with DUI’s.  I loved the job and I was being groomed for bigger and better things.

My life took a turn for the worse when I started having stomach pains. It got worse and worse, I went into the ER.  After the third night in a row of me being in the ER, they finally took it seriously. I think the fact that I looked like I was 6 months pregnant made things a little alarming for them.  Come to find out I had a bowel obstruction.  I went in for the surgery.  When I came out of it, my oxygen levels dropped below 50% and my heart rate shot up to 180-200 bpm.  They knew something was wrong and took me back into the operating room.  Come to find out I contracted something in my lungs, in the OR.  It was so serious that they ended up putting me in a medically induced coma.  I was in a coma for 3 days.  The doctors told my mom that chances are I wasn’t going to make it.  THEN, my mom was in the waiting room of the ICU and a Spanish lady came up to her to ask if she could pray with her.  My mom said yes.  She asked if she could come in my room and pray over me.  My mom agreed.  We are believers and would welcome any help at that point.  My mom said she prayed over me.  After that, I began improving and the doctors had no explanation.  My mom, dad and I do!  We know the Lord had a hand in healing me.  I was taken out of the coma and began healing after that.  The lady asked if she could meet me.  We said of course.  She came in and prayed over me again.  And I could feel her energy come right through my body.  It was a warming sensation.  I really started healing after that.  I don’t know how to explain it.  That was almost 3 years ago.

There’s more the story.

TO BE CONTINUED………..

Physical Therapy & Pain

We have been hit by a HUGE snow storm here and it’s wreaking havoc on my body.  My upper thighs are killing me and my hip joints hurt so bad.  I haven’t felt that in a while.  Schools are closed tomorrow and they have been telling us all day to stay off the roads.  I have the start of physical therapy tomorrow afternoon.  So I am going to call to see if they are open.  I really don’t want to drive in this mess.  It’s been snowing for over 24 hours.  My poor dog has no where to go potty.  And it’s just awful walking him outside in this weather.  The cold just goes right through me!!  I am hoping to get some help with the pain in my body via physical therapy.  I’ve wanted to try it for a while.  We shall see.

Has anyone tried physical therapy for their pain?  What did you have done and how did it work?

Chapter 2-Three Things We Know About Fibromyalgia

There is a lot of good content in this chapter, so bear with me as I share it.  Let me know what you think!  The information in this chapter discussion are not meant to diagnose or treat fibromyalgia.  Always, check with your doctor before beginning any treatment.

Despite being the second most prevalent rheumatologic disease, there has been relatively little research undertaken to understand Fibromyalgia.

1. Fibromyalgia is Associated with Disordered Pain Processing

The evidence in the medical literature is strongly supportive of abnormal processing of pain information in the central nervous system to physically induced pain such as pressure, heat, cold, or electrical stimulation resulting from generalized lowered pain thresholds in fibromyalgia.  The evidence is strongly supportive of an abnormality in the central nervous system pain processing known as central nervous system sensitization or central sensitization for short.  People with fibromyalgia feel pain more readily and with a much higher sensitivity, than those without fibromyalgia.  There is clear evidence for increased sensitivity to external painful stimuli in patients with fibromyalgia.

There are, also, neurotransmitter abnormalities which can be associated with serotonin level issues.  Not source or cause of pain has been identified in all of the studies.  Studies have not identified the sources or cause of the seemingly spontaneous pain reported in fibromyalgia.

2.  The Treatment of Fibromyalgia is Profoundly Disappointing.

Patients are being told they have a chronic painful disease that may impair their ability to function with no known cause, cure, or highly effective treatment and that they must learn to live with it.

Medications do not seem to help much.  Nonsteroidal anti-inflammatory drugs (NSAIDS) are frequently prescribed despite the evidence indicating that they are no better than the placebo.  Prednisone has not been show to be of benefit, either.  Analgesics are also frequently used in managing fibromyalgia symptoms despite little data regards their effectiveness.  Acetaminophen has shown less benefit.  Tramadol (Ultram) is a weak opioid medication.  There is some benefit using it alone or in combination with acetaminophen.  Antidepressant and other psychoactive medications are used frequently to manage the symptoms of fibromyalgia.  The most used and studied is Elavil and the muscle relaxant Flexeril.  In low doses (10-50 mg daily) Elavil has shown improved pain.  Flexeril in studies (given 10-40 mg daily) have reported improvement in pain, sleep, global well-being, and fatigue.  Long term use of either Elavil or Flexeril is unknown.  Selective serotonin reuptake inhibitors (SSRIs) (like Prozac, Celexa, and Zoloft) are a class of drugs that have been highly successful in treating psychiatric conditions such as depression, anxiety, and phobias.  When given to treat fibromyalgia in studies, they are not consistently showing improvement in pain.  But one study using Prozac and Elavil showed they were more effective in reducing pain and symptoms than either drug alone.  When studies were conducted using Effexor the results were mixed and inconsistent.  Cymbalta (used in studies) showed some improvement in some but not all pain measures, reduction in tender point counts, and some improved quality of life measures in women with fibromyalgia, but not in men.  S-adenosyl-L-methionine (SAMe) is a compound that has antidepressant, anti-inflammatory, and analgesic properties.  One trial showed improved mood and tender points, another showed improvement in mood, pain, overall disease activity and fatigue, and a third study showed no benefit.  Studies using Neurontin and/or Lyrica demonstrated improvements in pain, sleep, fatigue, and global symptom severity in higher doses. A placebo controlled trial to assess the benefit of Lyrica in patients with fibromyalgia showed that 63% of patients achieved significant reduction of pain initially, and after 26 weeks of treatment, 32% of those patients lost the therapeutic response achieved at onset but significantly more patients sustained a defined improvement compared to placebo treatment.  The expectorant guaifenesin has been used to treat fibromyalgia on the assumed, but unproved, theory that there is an excess accumulation of phosphate in the muscles and that this can be excreted by the action of guaifenesin.   A one year double blind controlled trial failed to demonstrate any improvement in global functioning or tender point counts.

The medication trial data do show that Flexeril and Elavil appear to be the most helpful drugs in managing fibromyalgia for reasons to be yet determined.

Study programs providing exercise about 1-3 times weekly for a range of about 6 weeks to 6 months and involved either walking, bicycling, dancing, or swimming with or without accompanying education, showed improvement in pain, pain threshold, tender point counts, fatigue, quality of life, and psychological distress.  But improvement is not uniformly noted.  Maximal exercise has been shown to increase pain sensitivity in patients with fibromyalgia.  The degree of improvement is not dramatic.  Tender point pain threshold improves by 28% and pain is reduced by 11%.  Some patients receive nominal benefit from aerobic cardiovascular fitness training while others cannot tolerate such programs.

Cognitive behavioral therapy (CBT) programs include education, coping skills training, cognitive and behavioral training, and relapse prevention.  All programs are centered around fibromyalgia.  Additional components may include relaxation training, stress management, biofeedback, meditation, exercise, physical therapy, or occupational therapy.  Studies are showing benefits from CBT.  There is improvement in pain, tender point counts, stiffness, stress when stress management is incorporated, distress, functional ability, sleep mood including depression and anxiety, and general healthy assessment.  And it sustained up to 30 months following completion of the program.

It is virtually impossible to perform blinded studies with regard to the patient and the treatment provider for non-medication interventions.  Hands-on type treatments are subjective in their application and difficult to standardize.  Some of those treatments are Electromyography (EMG) biofeedback, hypnosis and relaxation training, meditation, neck support, acupuncture, nutritional interventions and dietary supplements, whirlpool baths with valerian, dietary modifications, static magnet therapy, chiropractic intervention, massage therapy.  As with all the other treatments reviewed, the treatment trial data clearly tell us that fibromyalgia is not a homogeneous disease or process and that we have no clue as to what to target any treatment against nor how to measure its benefit.

3.  Patients with Fibromyalgia Do Not Do Well In the Long-Term

Patients with fibromyalgia in general do not do well in the long term, although those with milder symptoms may do better because inherently they have less severe symptoms and involvement.

2 Bad Days in a Row & Warm Water Therapy

Well, yesterday was a REALLY bad day.  The pain has been building up.  The pain is in my thighs and arms.  It would not go away with any of the medications I have.  I have tried the Flexeril, Ibuprofen, Tramadol, and Vicodin.  Nothing is touching the pain.  It escalated to the point that I couldn’t even walk.

As a precaution I have all of my meds and a glass of water on my nightstand.  I have basket of all of my meds.  It’s kind of crazy, but I have to prepare for the worst.  And the worst happened yesterday.  The meds worked well enough to get me out of bed and up the stairs to eat breakfast and then up again at dinner time.  But I just had my breakfast and dinner held until I could get out of bed.

I am very fortunate to be living with my parents, who help me out a lot.  I try not to ask much of them.  But they are kind enough to take my dog out and feed him in the morning.  He’s an early riser and grandma takes him potty when she gets up for work.  Then he likes to go in with Papa and have his cuddle time in the morning.  It really helps me out.  I can’t get out of bed before ten on most days.  It’s not because I’m lazy, it’s because I am so very exhausted.

My mom and I are taking a class through a local medical facility.  It’s a warm water arthritis class.  It had to be okayed by our doctors.  I’m hoping it helps both of us out.  She had fibromyalgia too.  I am looking forward to it.  It starts tomorrow.  Then I got a script from my doctor to go for warm water physical therapy.  I found a place in town to go too.

All in all, these past 2 days have been really rough.  I am still in pain, but I was able to get out of bed and shower today.  That’s a huge thing, sometimes!  It takes a lot out of me to shower on bad days.

Chapter 1-Pain From Nowhere: Fibromyalgia is A Failure of Medical Science

Who would want a disease or a diagnosis of a disease that has been described for almost two hundred years, that correlates with widespread pain and causes widespread tenderness, is associated with a significantly disrupted sleep pattern, has no identified known causes, has no known treatment, is chronic, and will persist for the rest of one’s life?

Over 6 million Americans diagnosed with fibromyalgia have pain that apparently nobody knows the cause of or how it even develops.  It is noted as far back as 1816.  Fibromyalgia is one of the most prevalent rheumatic diseases encountered.  Fibromyalgia is characterized as a medically unexplained disease.

When patients with chronic widespread pain are examined for tender fibromyalgia points about 1 out of 5 individuals had 11 or more tender points.  The tenderness had little relationship to the pain itself and was better correlated with depression, fatigue, and poor sleep.  The painful tenderness is found in at least 11/18 fibromyalgia points.

The mean patient age, at time of the diagnosis, is forties to fifties.  It is more common in females.

The core symptom of fibromyalgia is chronic widespread pain.  It is mostly located in the soft tissues, especially in muscle areas.  The pain can vary over the course of a day as well as over days and weeks.  The pain is greater than that reported by rheumatoid arthritis patients.

Another problem associated with fibromyalgia is fatigue.  Sleep disruption is a significantly prominent and frequent feature of fibromyalgia.  Patients awake unrefreshed.  Patients show, in EEGs, that there is an intrusion on the stage 3 and 4 Non-Rapid Eye Movement (NREM) deep sleep delta wave pattern.  It is worth noting that the experimental disruption of slow wave, stage 3 and 4 NREM sleep in healthy, normal individuals produces muscle aching, stiffness, and increased tenderness.

Cognitive impairments are also reported by many fibromyalgia patients.  They describe difficulty with short-term memory, concentration, and logical thinking.

Fibromyalgia patients have a greater number of lifetime psychiatric diagnoses compared to controls, especially mood disorders such as depression and anxiety disorders.  Major depression in 20-30% and anxiety disorder in 10-20% at the time of assessment were reported.  Psychiatric disorders including depression, anxiety, stress disorders like post traumatic stress disorder, and sexual and physical abuses are identified in 75% of dysfunctional fibromyalgia patients.

Other symptoms reported by individuals with fibromyalgia includes headaches, restless leg syndrome, irritable bowel syndrome, irritable bladder or female urethral syndrome, cold sensitivity along with cold hands and feet, sensitivity to chemicals, weather medications, loud noises, and bright lights, dry eyes and mouth, dizziness, paresthesia and dysesthesias (needles, pins, numbness, tingling, or unusual skin sensations) without obvious neurologic abnormality, skin photosensitivities, skin rashes and mouth ulcers.

There are no identified laboratory abnormalities that help diagnose, treat, or define prognosis of fibromyalgia.  The role of laboratory investigation in fibromyalgia is to assess for the presence of other conditions that co-exist with fibromyalgia or conditions producing fibromyalgia like syndromes.

Once a diagnosis of fibromyalgia is made, all other and subsequent complaints and findings that cannot be otherwise explained are attributed to fibromyalgia.  Forever.

Patients and doctors are in dire need of something new, different and more effective than the current thinking and treatment related to fibromyalgia.

Bad Fibro Day & Baclofen

I had a very rough day today.  The pain started at 3 AM.  I tried not taking anything because I needed to be some where today.  But when I rolled over at 6:30 AM, I couldn’t take the pain and needed to take my meds.  It was a pain like I haven’t had in quite some time!  It was widespread pain.  My arms, legs, back, and neck were killing me.  It was awful!

My doctor gave me a new medicine called Baclofen.  It’s another muscle relaxant.  It is stronger than Flexeril.  My insurance company said they were not going to insure the Flexeril any longer.  I was very nervous because it was helping with my pain.  But my doctor gave me some samples of Baclofen to try.  It works. It does appear to be stronger.  So I can now begin using it for my pain, along with my other basket full of meds by my bed.

Something to do today & Friends

Well, I had an errand to run today and had to do it no matter how I felt.  My aunt was counting on me and I already rescheduled.  We were supposed to do it on Tuesday.  So I felt obligated to do it.  I hate having to cancel on people when I am not feeling well.  It’s so inconvenient for the other person.  They get up and get ready and then I call and cancel their plans.  I hate it.  I feel like such a loser.  But the pain and exhaustion gets the best of me and I can’t function.

A few weeks ago I had plans with a friend that I just reconnected with after not talking for years.  I felt completely awful and couldn’t function.  I woke up at 4 am in horrible pain.  So I took my meds and knew I had to be up at 8 am.  So I set my alarm and when I woke up, I still felt awful.  My entire body was in pain and the medication, Flexeril, wasn’t working at all.  But it makes me extremely loopy.  So I sent her a text message at 8 am to let her know that I wasn’t going to be able to make it.  I didn’t want to call because I didn’t want to wake her up.  WELLLLL, that wasn’t the case at all.  I woke up at noon too missed phone calls and tones of texts.  In my loopy state, I sent my aunt the text that I couldn’t make it for coffee (to which she replied to me that she had no clue what I was talking about).  And texts, phone calls, and voice mail from my friend wondering where the heck I was.  I would have been so upset with me if I were her.  And that’s the life of a Fibromyalgia Sufferer!  My life is one big mixed up mess.

I feel awful that my life consists of constantly cancelling on people.  And I don’t know if they really understand what I am going through or not.  But I have to look at it from their perspective thinking how annoying I must be to have in the family or be friends with.

The Missing Pieces of the Fibromyalgia Puzzle by Jeff Sarkozi, MD, FRCPC, FACR

I will be venturing into this book.  I am looking forward to sharing it and educating you more about this disease/ailment.  Please follow me as I dive into this book that was so graciously gifted to me by my parents at Christmas!

www.missingpiecesfibromyalgia.com