Sunday, January 17, 2016

how about this piece of info...

Did you know that on Feb. 10, 2015, the Institute of Medicine released a landmark report that contained a series of recommendations for ME/CFS, one of which called for the name to be changed to Systemic Exertion Intolerance Disease (SEID). The name has not yet been formally adopted by world and federal health agencies and I personally think that is because they are still arguing over what ME/CFS is.  In the USA the doctors seem reluctant to embrace the thought that CFS is something more then someone being lazy...

Chronic fatigue syndrome (CFS) is a complex medical condition, characterized by long-term fatigue and other symptoms. These symptoms are to such a degree that they limit a person's ability to carry out ordinary daily activities.

myalgic encephalomyelitis (ME) means brain and spinal cord inflammation with muscle pain.  
Doctors have argued for years that there is no "itis" with this infection present but "most patients develop the syndrome after contracting a cold, flu or other viral illness, but other environmental or toxic exposures may act as triggers. Although no cause has been identified, people with the illness may suffer neurological, hormonal and immunological impairments."

One of the biggest problems with the names is the CDC's definition of CFS/ME from back in the late 1980's.  The criteria identify many patients who are more likely suffering from depression and other conditions that can cause prolonged fatigue and not actually a person with CFS/ME.  In other words they have been labeling us as being is all in our heads.  

The SEID diagnostic criteria from the Institute of Medicine ME/CFS Guide include six months of profound and
  • unexplained fatigue  
  • postexertional malaise
  • unrefreshing sleep
  • exhibit cognitive problems 
  • orthostatic intolerance, an inability to stand upright for more than a short period.
I think that it is about time that they are finally starting to believe their patients complaints and concerns and investigating what is going on.  I was devastated when I was diagnosed with FM and ME/CFS because I knew it was a label that would have profound effects on my health care forever more.  Remember that part about a post infectious syndrome or a trigger?  I was bitten by a lyme tick in 1990 on a vacation with my family to an endemic area in South Dakota.  I went through a lot but not all the early "symptoms" of the tick bite!  I didn't have a noticeable rash at any time during my infection...  I was told by my doctor if I didn't have a rash I didn't have it!!!

a list of signs/symptoms (s/s) from the Center of Disease Control (CDC)

Early Signs and Symptoms (3 to 30 days after tick bite)

  • Fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes
  • Erythema migrans (EM) rash:
    • Occurs in approximately 70 to 80 percent of infected persons
    • Begins at the site of a tick bite after a delay of 3 to 30 days (average is about 7 days)
    • Expands gradually over a period of days reaching up to 12 inches or more (30 cm) across
    • May feel warm to the touch but is rarely itchy or painful
    • Sometimes clears as it enlarges, resulting in a target or “bull's-eye” appearance
    • May appear on any area of the body
    • See examples of EM rashes
Later Signs and Symptoms (days to months after tick bite)
  • Severe headaches and neck stiffness
  • Additional EM rashes on other areas of the body
  • Arthritis with severe joint pain and swelling, particularly the knees and other large joints.
  • Facial or Bell's palsy (loss of muscle tone or droop on one or both sides of the face)
  • Intermittent pain in tendons, muscles, joints, and bones
  • Heart palpitations or an irregular heart beat (Lyme carditis)
  • Episodes of dizziness or shortness of breath
  • Inflammation of the brain and spinal cord
  • Nerve pain
  • Shooting pains, numbness, or tingling in the hands or feet
  • Problems with short-term memory
  • Fever and other general symptoms may occur in the absence of rash.
  • A small bump or redness at the site of a tick bite that occurs immediately and resembles a mosquito bite, is common. This irritation generally goes away in 1-2 days and is not a sign of Lyme disease.
  • A rash with a very similar appearance to EM occurs with Southern Tick-associated Rash Illness (STARI), but is not Lyme disease
  • Ticks can spread other organisms that may cause a different type of rash.
I even with all the early signs of the disease but since there was no rash I told by the doctors that I had some kind of a virus that was going around.  I lived with it cause we all know doctors know best!!
In 1992 after dealing with "issues" for two years I developed heart palpatations, dizziness, shortness of breath, nerve pain issues, the shooting pains, numbness, or tingling in the hands and feet and memory issues.  My doctor told me I had anxiety and depression and put me on drugs...I didn't do well with the drugs and became 'mean'!  I started doing research and demanded tests to be done...which she told me I would have to pay for if nothing showed up...I didn't care I knew something was wrong and it was.  I was positive for Lyme's disease on a blood test but not a strong positive since I had been infected such a long time past.  My doctor still wasn't convinced and ran another test...still low positive so she gave in and gave me the antibiotics needed to treat the disease.  I went to two courses of drugs before I tested negative on a new test...a different test then the first ones we had done...she was convinced I never had the disease...I was convinced I needed a different doctor.   I suffered...yes I have suffered with CFS/ME/SEID all this time...most of the time it was tolerable and I could work and had control of my life except for small relapses. 

Fast forward almost 20 years to the summer of 2010...I had a lot of stressors in my life that year and was working too many hours, not getting enough rest etc and I collapsed at work one night.  I was tested, retested, and tested again and not much of anything showed up on all the lab and xrays they did.  Most significant was verrrrrry low Vit D and Magnesium.  My doctor finally decided I had FM and CFS/ME/SEID and tried to bribe his nurse to come tell me cause being a critical care/emergency dept nurse he knew I wouldn't believe in the diagnosis.  Everyone knows there is no such thing as FM CFS/ME/SEID!  Those people are just drug seeking neurotics....yes my belief at the time...better watch what you believe to be truth cause if it isn't it might just come back and bite you in the end.

I have been on disability since 2011 because of the disorders.  IF you want more information on the past issues I have had you can read previous posts.  I had decided just before Christmas I was going to try and push limits and try to walk more and do more but that hasn't happened and probably won't for a while!  Christmas day I fell and fractured my left knee!  What did I do?  Nothing!  Was was walking out to my car and down I went.  I didn't trip over anything, didn't twist an ankle, step off a curb, nothing.   I went to the emergency room on Christmas day but was told they didn't see a break on xray and was sent home with orders to follow up with an orthopedic doctor.  I did...took two weeks to get in to see his PA and he ordered an MRI.  I wasn't diagnosed with it fractured until 3 weeks after the fact.  I had to go in to get the MRI results a week after the test and it showed multidirectional fractures in the proximal tibia...  What am I suppose to do about this broken knee I have been walking on for 3 weeks...I was told to just keep doing what I have been doing, don't fall, don't exercise, use a walker or a cane...casting and brace won't help right now.  I wonder how they (doctors/PA) would have dealt with it and only be given 15 Percocet to handle the pain!  I feel I have been screwed over by this new healthcare system dictated by the rules and regulations of the big business pharma and insurance companies.  I was told that they couldn't do an MRI at the ER because I didn't show a break on xray and it was a specialists field now!! 

I am flaring with the FM and CFS/ME/SEID and that is what is driving this post.  I have pain in the knee, back, and hips from the fall and then the all over achiness/I don't feel good from the chronic disorders.  Life is a bitch and then some right now.  I need to take down Christmas decorations, clean house for a visitor that is coming from England and all I can think about is where my next cup of coffee is coming from cause I hurt or I am so tired I don't want to get up to go to get it or even go to the toilet.  So there is my story!  I think I will go back to bed and watch some TV...brain rot but my brain is foggy and it is hurting to just finish this post.

more later...

1 comment:

fibromyalgiapatient education said...

Interesting and valuable Post.
It is helpful information for everyone.
Thanks for sharing ! Fibromyalgia Conference