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...

Saturday, January 16, 2016

Happy New Year!

Happy New Year!  Hope everyone had Happy Holiday's and has a game plan laid out for the new year.  I personally don't believe in resolutions because every year that I sat down and wrote something up I failed...  Yep a total failure!  Worthless and useless...  That really doesn't describe me so I decided to quit doing that to myself and making myself feel bad.  I do what I can on an unscheduled basis and I feel better about myself.  Doesn't mean I don't have plans I just don't do resolutions!

My year was rather uneventful last year...for the most part.  Health wise I had ups and downs but don't we all with fibromyalgia, chronic fatigue/Myalgic Encephalomyelitis (FM, CFS/ME), etc.  I had a little more issues with CFS and subsequently a little more apathy.  I think you what I mean... its when you don't feel bad but feel so tired that to just get out of the chair to go lay down is a major issue.  It takes too much effort to do art, too much effort to blog on your page, too much effort to order take out much less cook a meal...  I talked my feelings of inadequacies over with my the lady, if you don't have a talk therapist I strongly suggest you get one!..and she asked me if I was trying to be someone else?  Someone who is younger, healthier, and able to do what they want?  Am I setting the bar way too high and every time I try to jump and make the bar do I fail?  Do I beat myself up every time I don't succeed?  YES I DO!  Sometimes it is hard with our disorders to determine what is "normal," what is "abnormal," and when we are just reacting to what the society around us is dictating what they think we should be like.  My talk therapist helps me determine what is me and what is the ubiquitous them!

Back to the issues of this year...  I made several long distance car trips this year going to events and camping with my daughter, her husband, and friends.  I love to travel to see and do new things.  Despite my 'issues' I keep pushing myself to do more!  Sound familiar!  It takes me a good two weeks of down time after a road trip to bounce back and be my 'normal' again.  Was it worth it?  I think so.  I have learned that the pushing is the only way I will ever get anything done anymore but it is tough for me to know when it is a gentle push and when I am really over pushing.  I have had to learn to put limits on what I can and can't do...things that are already limited by my physical disabilities!  One thing I have learned that works for me is frequent short naps, going to bed earlier and getting up later and not apologizing when I do it.  I sleep in the car with feet kicked up and eye mask on when possible.   You do what you have to do!
A picture from one of the trips!  We went to Pennsic Wars in about it here!
Julie, me, and Heather my daughter
We had loads of fun but it was two weeks long and took its toll on all of us not just me.  Julie has lymphoma and like me was in the tent resting frequently.  Why the strange clothing?  Go read the linked post!

I was seen in the ER twice this year!  Not by choice but because my doctor was out of his office and not working at the time.  Both times I encountered this brick wall called FM, CFS/ME that is documented in my chart!  I get so tired of the looks that say, "okay, I know you are here for pain meds!" or the head nodding while you are telling them your issues...of course their thought are off to Aruba or what they are having for lunch not really what it going on with you!  Anyone know the look and attitude.   Okay back to the story!  The first visit was in September...I was have excruciating left flank pain and pain on urinating with blood!!!  I went in and after all the BS above was take care of and labs came back they were very solicitous and told me that they thought I had passed a kidney stone and it caused an infection....OKAY asshats!  Score one for me!  sorry but it feels good for something to show up and not have a single thing in lab or CT that proves anything wait...
Does that make me mentally ill to be happy I had proof I had something physically wrong with me?

The second visit was on Christmas day and I fell hurting my left knee.  Talk about pain!  I woke up really happy and feeling pretty good because my son and his family was in town with their children for the first time in six years.  They are military and get about a lot and with young children it is just a problem to travel anyway...  They were staying at my daughters house and we were leaving to go there when I fell and hurt my left knee...well you know Grandma can't disappoint the grand babies so we went on and watched them open gifts, ate breakfast etc and my knee kept hurting and swelling so my daughter hauled me off to the ER.  We actually got to the back to the exam rooms fairly quickly, got the Xray done and was told it was just a soft tissue issue...poet...and they didn't see any broken bones but I should follow up with a orthopedic doctor to make sure. 

Fast forward 2 weeks...yes two whole weeks before I could get in to see an orthopedic doctor...but I was actually seen by his PA Mike not the doctor!  Anyway 2 weeks later I am seen by Mike who tells me he has looked at the xray but seeing the swelling in my knee that I should probably have an MRI to make sure it was just a soft tissue issue...I like the rhyme!  I got in to the MRI about 2 hours later but had to wait another week to go back to the office to get the results.  Okay refresher  December 25 fell, January 7 office visit and MRI, January 14 back to the office to get results... seems really wrong some how to me to let an old lady sit in pain with a horribly swollen knee and leg.  I have to hobble around on a walker or a cane and still have loads of issues with balance.  I digress again...FM with foggy brain and random thought patterns.  ANYWAY!  I have a broken knee...not just fractured in one place but multiple fractures going different directions!  Great news after walking around on it 21 days!  Mike was very apologetic and told me that he wished they had known sooner but that there wasn't much they could do about it now.  I must have looked really pissy cause he started asking me what I was doing for pain, walking etc and gave me a few more hints of things I could do!  I am to make an appointment for 5 weeks and go back and also make an appointment with a bone clinic specialist to find out why a short distance fall broke the bone.

I also had an appointment with the rheumatologist/FM doctor this week.  No lab work, no xrays, no nothing.  Told me to keep doing what I am doing and come back in a year.  WAIT!  Does this mean I am no longer disabled?  no longer need a doctor?  WHAT the hell does this mean?  I actually asked her that I was so po'd about doctors and visits etc at this point.  No viable response.

I am still participating in the drug trial for the FM drug.  I don't think I am on any drug because I am not feeling any different fibro pain wise.  If I am on the drug then it is at a lower dose and not enough to affect my pain levels but I think it is effecting my sleep.  The first screen capture is from my FitBit sleep record before I started the study.  It shows how much I am sleeping and how well I am sleeping.  As you can see 9 hours in bed netted me 6 hr and 21 minutes of sleep.

This one is one take from yesterday and it shows I am sleeping a lot better.  Now I have to weigh in that I did take some ibuprofen prior to going to bed.  Another thing I have found is the later that I go to bed the better I seem to sleep in the long run! 
I wear a FitBit Flex and I can monitor how many steps I walk a day and how well I sleep etc.  There are more expensive ones out there that tell time, keep track of your heart rate, blood pressure etc.  I just want the basic they others take learning to operate. 

Well I think that this is enough for one post...maybe a little more then enough but I had to get caught up!  Have a great month!