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May 12, CFS/ME and Fibromyalgia Awareness Day- What's It Like to Survive With ME/CFS and FM


Health & Wellness  (tags: may 12, ME/CFS, FM, Myalgic Encephalomyelitis, chronic fatigue syndrome, doctors, antidepressants, pdfs, mefmactinnetwork, fibromyalgia, neurological, healthcare, medicine, research, health, society, risks, illness, humans, government, drugs, ethics )

Cheryl
- 3721 days ago - cherylspeaksout.blogspot.com
`So what's it like to live, or exist for many of us with CFS/ME and FM. I have since 1991, I was diagnosed by an Infectious Disease Specialist, Dr. Irving Salit, and had to under go, a battery of tests to rule everything else out. ME/CFS and FM varies fro



   

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Cheryl B (373)
Wednesday May 13, 2009, 3:21 pm

May 12, CFS/ME and Fibromyalgia Awareness Day



So what’s it like to live, or exist for many of us with CFS/ME and FM. I have since 1991, I was diagnosed by an Infectious Disease Specialist, Dr. Irving Salit, and had to under go, a battery of tests to rule everything else out. ME/CFS and FM varies from person to person. For years most of the medical community said it was psychiatric. Many have been damaged by psychiatric drugs, many forcibly committed by the psychiatric community to force their drugs on them. There is a subgroup that is dose sensitive or intolerant to antidepressants and other medications, of course this was ignored. Millions didn’t believe in it, you were just ‘tired” and “lazy”, and then of course was “you look well”. So do alot of cancer patients that are undergoing Chemo. You are left behind by your friends, even family in most cases, husbands and lovers leave often, as you can not keep up and they do not want to become caregivers. Increased isolation occurs and financial problems. Many are still faced with fighting for their ME/CFS and FM to be acknowledged for disability whether Government or Insurance.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ( ME/CFS ) by WHO is Neurological Diagnostic Code encourage the classification of CFS/ME as a 'Nervous System Disease,' as worded in the ICD-10 G93.3 and From the August 2005 meeting of the CFSAC at the DHHS (Department of Health and Human Services, USA).and; CFS/ME should be classed alongside other diseases such as multiple sclerosis and motor neuron disease. Ontario CFS is Neurological Illness Diagnostic code 795 and 'Fibromyalgia/Chronic Fatigue Syndrome care' has now the OHIP time-based billing Code number K037 in 2005. But stigma, discrimination persists, due to lack of education to the public, doctors, research, and Governments.

There are Seven genomic subtypes of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME): that combine different variations in symptoms and severity. For those who are affected the worst, it can be a living nightmare. Many left bed and housebound unable to take care of themselves. Often unable to bath themselves or change their clothes, change your bed, or lift a brush to brush your hair, or your teeth. Many become wheelchair bound, some totally bed confined.

One of the best videos I have seen to try to explain to others is the Sleepy Dust video, which I will post again here:




I have done a few posts regarding ME/CFS, it is frequently mentioned as I endure it every day. Mine has always been severe and started with a flu, that hit my brain, central nervous system, my lungs, the muscles around my lungs, and the flu like symptoms, lead like fatigue. It was like no flu I had every had, and in some ways felt abit like polio, the way it affected my lungs and the muscles and ligaments around my chest squeezed so tight, breathing was extremely difficult, so was the pain. The fatigue and the weakness were extreme, and the severe cognitive problems, and continued after upon the littlest of exertion, worsening your symptoms and returning you to bed once again. The severity of mine fluctuated; however, it increasingly worsened over the years. Your brain get’s switched around and you often sleep all day and are awake all night. Or you hyper sleep with no REM sleep. You never wake up feeling refreshed and well. The smallest amount of physical or mental activity can cause flu-like symptoms, severe fatigue, and worsening of other symptoms. Cognitive difficulties become more pronounced – your responses are slower, less coherent, more confused, and you have difficulty recalling information and words. Recovery from reactive symptoms can take a day, weeks, or more. Light often hurts; sound becomes noise, and touch painful. This occurs for me during a ‘crash” when all your symptoms worsen at the same time, for many it is all the time and they have to live in darkened rooms. For me it was often months having severe set backs. Now it is severe all the time, especially since the repeated brain and body damage and dystonia that is spreading through my body. It can affect every functioning system of your brain and body.

I didn’t think I would live through ME/CFS and FM, many don’t. Suicide is the highest cause of death, then heart attacks and strokes as your blood volume and oxygen levels are low which affects the values of the heart having to pump harder. The mitochondria in your cells aren’t producing energy. The ‘disease” has been found in the cells around the spinal cord now during a forced autopsy on Sophia Mirza, which the medical community tried to cover in the UK. If it hadn’t been for a persistent MS specialist and Sophia’s mother Criona, they never would have found it. You can visit her site her mom and her sister have set up here http://www.sophiaandme.org.uk/ .

How is ME/CFS Diagnosed? -The patient must meet all 7 criteria.

Clinical Definition of ME/CFS

1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period – usually 24 hours or longer.

3. Sleep Dysfunction: There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.

4. Pain: There is a significant degree of myalgia. Pain can be experienced in the muscles and/or joints, and is often widespread and migratory in nature. The pain may also have neuralgic qualities. Often there are significant headaches of new type, pattern or severity

5. Neurological / Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances – e.g. spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload phenomena: cognitive, sensory- e.g. photophobia and hypersensitivity to noise – and/or emotional overload, which may lead to “crash” periods and/or anxiety.

6. At Least One Symptom from Two of the Following Categories:
a) Autonomic Manifestations: orthostatic intolerance – neurally mediated hypotension, postural orthostatic tachycardia syndrome, delayed postural hypotension; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea.

b) Neuroendocrine Manifestations: loss of thermostatic stability – subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change – anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress.

c) Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flu-like symptoms, general malaise, new sensitivities to food, medications and/or chemicals.

7. The illness must persist for at least 6 months although a preliminary diagnosis may be made earlier.

Other illnesses will be excluded.

What are Some Areas of Research?

 Neuropathy and brain imaging: There is disruption in the communication between the brain and the other body systems. Abnormal levels of some of the body’s chemical messengers have been found. There is significantly less blood flow and metabolism in parts of the brain. Small lesions have been found in the brain.

 Neurocognitive dysfunction: Research indicates brain dysfunction in many cognitive and verbal tasks.

 Memory: There is dysfunction in the part of the brain that regulates new memory production, so events may erroneously be thought to be new.

 Sensory information is mismanaged.

 Autonomic nervous system: There is dysfunction of the body’s regulating and stabilizing systems.
 Cardiac abnormalities: A number of abnormalities have been found in the heart. There is also a marked reduction in the circulating blood volume. Many patients have neurally mediated hypotension or tachycardia.

 Abnormalities in the immune system: There is often significant activation of parts of the immune system. Poor cellular function with significant abnormal activity of the natural killer cells, that form part of the body’s antiviral defense system, has been established.

 Antiviral defense pathway: There is dysfunction in an antiviral defense pathway. Some of the molecules are being abnormally cleaved. A test measuring the ratio between the normal weight molecules and the cleaved molecules can distinguish ME/CFS patients from healthy controls and FMS patients.

 Infectious agents: ME/CFS patients likely have many active infections but it has not been determined if they are a cause or a result of the immune dysfunction

The support systems for ME/CFS survivors are very poor. A study by the Canadian Government was released, and forwarded by Lydia Nelson of the ME/FM National Network, if you or a love one, or a friend you know has ME/CFS and FM, I strongly advise you to spend a lot of time on the site, and forward it to everyone you know.

There are PDF’s on site at http://www.mefmaction.net/, and I hope you become a member for $25.00 a year, get quarterly newsletters and support this cause and non-profit agency that has changed the laws in Canada and created the Clinical Definition of ME/CFS. More research, support systems, public and government education and a CURE are needed. Currently Amplegin may be the most promising which has been held up by the FDA and Canada for several decades that also is used for HepC, HIV and oddly enough Cancer. It is available on a cost recovery program in Canada and some other countries and is expensive, you have to pay for the cost of the infusions and the doctor and nurse admistering them, unless of course, you can get into a trial study. Most have showed improvment, some have totally recoved, some replase but not as badly and go another round. Two infusions are requried a week, so finding veins can become a problem. I belong to several groups that are in the trials, they frequently say the first thing to go away is the dementia like problems, many are gleeful they have their lives back, or enough to fuction and enjoy it not just exist.

From some of the leading experts in the ME/CFS field, this about sum’s it up for those of us living with severe ME/CFS:

“Like all illnesses, the severity varies from patient to patient. Dr. Paul Cheney stated he had evaluated over 2,500 ME/CFS cases and it can be a nightmare of increasing disability with both physical and cognitive components. Severe cases can have both an MS-like and AIDS-like clinical appearance. Dr. Dan Peterson, found that, “ME/CFS patients experienced greater functional severity than the studied patients with heart disease, virtually all types of cancer and all other chronic illnesses”. 20 years after the epidemic, Dr. Peterson said he has never had a patient that recovered from ME/CFS. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy, haemodialysis, as well as those with HIV (until the late terminal stage), liver transplants, coronary artery disease, and other ailments, and again found ME/CFS patients had the lowest quality of life. Dr. Leonard Jason stated in a radio interview that ME/CFS “is actually more debilitating than just about any other medical problem in the world”.

For detailed PDF's on ME/CFS and FM click here. Please download for yourself, your friends, and especially your doctors and specialists.

Much more information is available on http://www.mefmaction.net, spend several days there if you have ME/CFS or FM and also www.prohealth.com, especially their research and natural alternative healh products, which originally was www.immunesupport.com.

This is also located on Care2 News: Here C2NN

 

Elainna Crowell (174)
Thursday May 14, 2009, 2:51 am
My heart goes out to you dear Cheryl. I know how terrible it is to suffer unceasing pain while being labelled a psychiatric case. I wish I could do more than offer prayers for you, but I'm pretty limited myself.

Sincerely,
Your friend
Elainna
 

Marty H (119)
Thursday May 14, 2009, 3:33 am
Thanks for sharing Cheryl. I understand the tiredness and Fibro. I have narcolepsy, sleep apnea, arthritis, gout and my doctor thinks some fibro also. I tested positive for hep c but my body threw the virus out and I believe that is due to long term vitamin/herb use. You are in my prayers.
 

Cheryl B (373)
Thursday May 14, 2009, 8:05 am
you will be able to help, when the website is done, and with letter campaigns and petitions, i think the petitions will take too long, typing when able is very difficult, the ME/CFS and FM, I didn't think I would live through sorta have notthing on the brain body damage which is extensive and movement dysorders, and dystonia now spreading through my body very fast since last year its' getting quite gruesoem, if I was well undernealth all the damaage it certainly would be alot easier, yes it would make a huge difference

Prayers are alwasy apprecited all-ways

Namaste
 

Genna B (5)
Thursday May 14, 2009, 10:50 am
I have a dear friend that has tried to explain to me what he is going through with this, and I have to thank you, Cheryl, for posting this here, and for your wonderful sharing heart. I can really better understand how much he has been going through and although I have always felt deep compassion for his pain I have never as fully been able to clearly understand what it is about as I feel I do now. Thank you, sincerely, from the depths of my heart. In peace and gratitude, Genna Barrett
 

Mandi T (367)
Thursday May 14, 2009, 10:54 am
Docs really need to address this issue with more sincerity.
Tx for posting
 

Linda H (199)
Thursday May 14, 2009, 1:31 pm
Right now I am going though alot I don't even seem to think because I hurt so I do. Cymbalta helps and I can not be online to much now. Thanks,Cheryl
 

Winefred M (88)
Friday May 15, 2009, 5:01 am
Thank you for speaking up. Read the article.
 

. (1)
Friday May 15, 2009, 7:20 am
These illnesses are determined to be like Lupus, they stem from an autoimmune disorder. It took many years for professionals and doctors to find out these are true and very real diseases, not something we make up in our heads. I have noticed a great deal in the news about Fibromyalgia and CFS. I am thrilled to know there is some progress to help in research, find out why some get these illnesses, and hopefully find a cure someday. I was put through the gamut of the medications for both CFS and Fibro. Cymbalta was frightening. Within less than a month of taking it, I developed a "movement disorder", where my body actually sways back and forth, or gyrates and I have no control over it. It did not help any of the symptoms, and I will always have issues with the movement disorder. They also put me on the latest one..Lyrica, which did nothing for me either. But, I have other autoimmune issues, plus migraines, and chronic pain... so my situation is complex due to so many other health issues I suffer from. Some medications that others can take, I am not able to due to my stomach, my heart, and so forth. Thanks for this information. I try and keep up with the latest research, possible new diagnosis and treatments...

 

Cheryl B (373)
Friday May 15, 2009, 8:46 am
I need to get more information on the blog typing and cognitive are very difficult for me and a FIRST post that stays as one, that will explain more instead of the side bar where more info is, if you read it, and some of the other posts, they not only mnake mention of the extensive damage done there are videos to show it that are not on my medical records, and left here, including movment disorders from their drugs, watch out for their drugs, SSRI's cause alot of damage for alot of people the list is long and they incluce movement disorders, that many think are only anti-pshycotics.

And Marty, I am taking naturals for my hepC which are costly, I wouldn't take pegasus.interferon, everyone I know it did more damage or worsened them that i have heard of or the virus just returned worse after, it's for big pharma big bucks. And Chronic Fatigue Syndrome/ myalgic encephalomyelitis having NOTHING TO DO WITH BEING 'TIRED". Extreme fatigue, that is often lead like and from the littlest exertion that confines you to bed with all the symptoms worsenign IS NOT BEING TIRED. There is no comparison.

For fibromyalgia they say there are 18 tenderpoints although some of use insist there are more, you have to have 11 of them to be diagnosed with FM.

Glad your body ejected the HepC, I know of others that are clear but only from NATURAL Alternatives. I don't hang around the interferon groups much.

However the Ampligen, for ME/CFS HAS PROVEN effective, and yet the government if farting around with it and big pharma for well over 20 years, not enough money in it prior for them so it kept being sold to other companies and trials and to start again. the FDA has been holding it up for ages and Canada Health.

I have several movement disorders FROM THERI DRUGS, and every muscle and liagment is damaged in my body shortened and stiff from tthem as well.

Research what you take BEFORE you take it, and get a doctor that listens IF YOU CAN.

healing blessings to everyone,
namaste
cheryl/sunshine
 
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