Tag Archive | disease

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.

 

 

Great book to read

I highly recommend From Fatigued To Fantastic by Jacob Teitelbaum M.D. It was the first book I picked up after being diagnosed in 2007.  I can’t say enough about it.  I read it from cover to cover.  It explained the disease and gives great recommendations for supplements and medications.  Dr. Teitelbaum has been on shows like Dr Oz talking about Fibromyalgia.  He has his own website for supplements, too.  I recommend following him if you want to study the disease.

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.

Life with Fibromyalgia, wrote 4/22/10

Life with Fibromyalgia-Written on 4/22/10-So life with fibromyalgia is not an easy route. I have pain everyday of my life. But it’s to what extent I can handle the pain both mentally and physically. Today I can’t handle it either ways. The pain really gets me down. I have so many physical ailments that accompany my illness….mitrovalve prolapse, IBS, migraines, shingles, and a lowered immune system because of the syndrome. I am on some meds but mostly minerals, herbs and vitamins. I am trying to do this as naturally as I can. But when the pain is as bad as it is tonight there is nothing that I can do. I just have to suffer through it and hope that tomorrow is a better day. This syndrome really gets me down. I can’t have a normal day or life. The pain is always there and my nerves are always rapidly firing. So something always hurts. Some have occasional back aches, headaches and can take something for it to get rid of it. Perhaps a massage or a cold/heat pack can help. Not me. First, don’t touch me when I’m in pain…it sends me off into more pain….then some meds aren’t strong enough to settle the pain down. So I sometimes lay in bed in pain, crying and can’t sleep or anything. So the next day I’m tired, stressed and feeling like crud. And without sleep the body can’t heal or rejuvenate itself. I have to keep a reserve of energy on my good days by sleeping in on my days off. I catch up on my sleep from the work week on my days off. Sitting in my chair and trying to work and talk to customers, is often a very big task. The pain is horrible and trying to concentrate on something else in difficult. I often ask God what did I do in my life to deserve this. Well, I can think of a few things. But I know that God is an all loving God and wouldn’t punish me for my transgressions this way. But wow, the pain is so bad. I cry a lot about it. They say that suicide is high with Fibromyalgia patients because some can’t cope with the everyday pain and never getting relief. So much research can be done to help us, as patients. I just need to get the word out about this syndrome. So many people don’t understand it because as patients we don’t complain about the pain and put on our happy face when we are out in public so no one hears us complain. Or we stay home cooped up like a hibernating bear. It’s such a difficult syndrome. I’ve lost jobs, missed a Sox game, lost friends, and just plain disappoint myself. I can’t describe the feelings I have about this syndrome but there are days that I am so mad at it. I want to kick it out of my life. But I seem to kick people out of it instead. I just don’t think anyone can handle my syndrome or begin to understand what I go through as a patient with this syndrome. It scares me that I might never find someone who can take care of me the way I need to be cared for.

Supporting People with Fibromyalgia, wrote 6/12/10

My goal in life is to be there for people with Fibromyalgia.  It’s such a silent disease that no one knows you have it, until you tell them.  When you tell them, they look at you like you have an alien coming out of your stomach.  No one really knows about this disease and no one really asks when you tell them.  No one sees us in pain because when the pain is bad enough we stay at home in bed until we can bear it.  The public never sees our pain. 

I put a smile on my face and trot on.  When I tell people that I am always in pain, they take pity on me and don’t know if they should touch me, if they will make me crumble or hurt me. 
Gentle hugs is what we say in the Fibromyalgia community!