My ME/CFS Story

May 12, 2016

By: Nita


Mine is a story of gradual onset MECFS.  I was in my late twenties when my life began to 'not make sense'.   This was in 1976.

I had always been active in sports and was fully engaged in being a wife and mother of two young preschool children.  My sports at the time were tennis, softball, and indoor volleyball.  Having been a Girl Scout myself, I became a Brownie Girl Scout leader when my daughter became of an age to join.  I loved doing things with my troop, camping, h/iking, working on badges, interacting with the parents, and going on trips with the troop.
 
My life began to change.  Every day began with a struggle to get out of bed and take care of my family.  Simple things like cooking breakfast became fatiguing.  I kept pushing myself to live as I was accustomed to living.  Hiding the struggle I was having.  Wondering why I was so tired all the time.  Why I ached as though I had the flu when clearly I did not.  I did not have a fever, in fact, my temperature was running well below normal.  So, obviously I wasn't sick.  Just tired and achy.  Why?  I pressed on, thinking it would pass.
 
My family doctor, Dr. Ray, and his wife often played against my husband and I in tennis tournaments held in our small community.  Their daughter was also a member of my Brownie troop and we were members of the same church.   Dr. Ray took me aside after a tennis match and asked me what was wrong.  He had noticed that I just wasn't up to my game and was struggling.  He had also observed me with my troop on a recent parent/daughter weekend campout and had noticed I my struggle then as well.
 
I told Dr. Ray of my fatigue and aching muscles.  Quickly explaining that I had no fever and didn't think I was sick, just extremely tired for some reason.  He ordered me to be in his office the next morning at 7:30 for some tests.
 
Tests, tests, and more tests.  With no answers.  Everything was within normal range.  I was very healthy!
 
Specialist, specialist, and more specialists.  With no answers.  Everything was within normal range.  I was very healthy!
 
Meanwhile, I was getting sicker and sicker.
 
This was the pattern for the next few years.  I was gradually getting worse.  Worse fatigue, worse pain, cognitive problems began to arise, if I pushed myself, I felt horribly worse the next day.  The decline in my health was very slow, but very steady.
 
One specialist suggested that since I was a bit underweight, I should try to gain a few pounds.  I did.  Later another specialist suggested that since I was a bit overweight, I should try to lose a few pounds.  I did.  One specialist suggested that I was too sedentary and should get out and exercise more.  I did. I got much worse.  One specialist suggested that I needed to take vitamin and mineral supplements.  I did.  I started to have gut issues.  One specialist suggested I should stop taking so many vitamins and supplements because the only deficiency showing up in test was vitamin D and that was the only vitamin I needed to supplement.  I stopped all the other vitamins and supplements and gradually the gut issues disappeared.   But the fatigue continued to worsen, the pain was still present, and the cognitive issues continued to bedevil me.
 
Then in the mid 1980s a doctor diagnosed me with CFS.  Great!  Give me the pill!  Give me the shot!  Give me the surgery!  Whatever it takes, let's do it and I'll be back on my feet and getting on with my life!  Thank you doctor!  Let's "Git 'er done!!"
 
Sorry ... no cure ... no treatment ... don't even know what causes it ... don't even know for sure what part of the body is affected ... all we can do is try to manage the symptoms.  We have hope that maybe in a year or two a cure will be found.
 
That was forty (40!) years ago.
 
Today, my doctor tells me:  "Sorry ... no cure ... no treatment ... don't even know what causes it ... don't even know for sure what parts of the body are affected ... all we can do is try to manage the symptoms.  We have hope that maybe in several more years a cure will be found."   
 
Several MORE years?  I am now 67.  
 
The disease has progressed to where I am housebound, mostly bedfast.  My heart is now affected, the shortness of breath so severe I can take only a few steps.  The pain is worse. The cognitive disfunction is so disabling that sometimes I can barely talk and my memory is affected.  I am so weak from the fatigue.  If I stand for more than a very few minutes, I pass out due to Orthostatic Hypotension. 
 
I don't have several more years......
 

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16 comments
6

I'm so sorry.  Your story is scary.  My story began similarly...I'm almost 60 and feel I'm doing everything I can but continue to get worse.  I agree...we don't have time.  It's been 15 years for me.  Please people stop treating us badly, as if we're too sensitive, faking, lazy or a hypochondriac.  This is real, we didn't do anything to cause it, we're  existing the best we can and need attention and money for research to figure this out.  My best to you to find some joy in your day even though it feels  impossible. 

Commented 7 years ago Kathy 16
3

Thanks for Sharing your story...mine is similar. 

Howeever for the last 10 years there's been improvement w using SSRI's, sleep meds, Yoga, and low dose naltrexone to help cognitive function. ( several other supplements as well)...I still operate at 1/4 of 'normal ' but grateful to be participating in life part time because I know it can be, and has been a lot worse. I've recently been introduced to the 5 minute journal and try to focus and be grateful for what I can do rather than what I can't. It helps. Most of the time. This is a nightmare of a disease. So similar to MS but without the treatment understanding or recognition.....

i wish all suffering with this love and peace....

 

 

 

Commented 7 years ago Loriann 13
1

Thank you for sharing.  I urge you to research Lyme disease.  You do not have to be bit by a tick to get it..It can be passed from mother to child, flies, mosquitos, and passed sexually.  Many are being misdiagnosed with fibromyalgia, MS, ALS when in fact it is actually Lyme.  Testing for this bacteria is extremely unreliable.  It affects the heart, joints, nervous system etc.  Please visit ILADS website and also Google the horowitz Lyme questionnaire.  The most trusted lab for this testing is Igenex.  I was missing diagnosed with fibromyalgia for 11 years.  The only reliable doctors that can help are LLMD or LLNDs which you can request from the ILADS website.  please also consider watching the documentary under our skin.  Lyme is an epidemic and it is being swept under the rug.  I hope this helps someone!

Stephanie A.

Commented 7 years ago Steph 11
-1

But there's no treatment for Lymes either, right?

Commented 7 years ago Patti 60
1

There is hope, but more results will come with more awareness, getting more diagnosed, getting more publicity for politicians, neighbors, friends, researhers, philanthropists, ,then will get more funds, more R&D, diagnostics, treatments and cures.  MEAction.Net is pushing for awareness, and SolveCFS.org and End-MECFS.org are pushing for more research.  Just like Pink ribbons are for breast cancer awareness, blue ribbons are for M.E., Myalgic Encephalomyelitis awareness.  If you are willing and able, can you display blue ribbon on door or mailbox 24/7/365 and tell neighbors, family, friends about M.E.?  I did print several thousand feet of Blue ribbon and can send anyone in US 12 feet in envelope if you provide address.  Send address to me at [email protected]  I am well and in San Ramon CA, but son is 22 years old and bedbound, cannot talk, chew food, stand, tolerate any light or sound, so I am strong advocate for Federal and philanthropic funding.  Those ill have little energy, but for advocates, hope we can work to Cure M.E. soon, for Nita, my son Tom and 17,000,000 others worldwide.  If you can ask for a proclamation for ME awareness from your mayor, governor etc, this will alone raise awareness with people sworn to represent you (or M.E. in this case!).  Typical proclamations are listed at Mepedia.org, see link  http://me-pedia.org/wiki/United_States_proclamations  I like Los Angeles proclamation.  Hope we can get 50 Governors, most major mayors, to support M.E. by May 2017 ME Awareness day.

3

I am also 67 reading this  is exactly my life story to a T!  Bless your heart I know how hard it can be.  The only difference is my  illness started with a flu virus and I have never recovered. I have been bullied at work because of my memory problems I too was sporty and a hard working Project Manager. I have given up trying to get someone to listen to me. Call it what you like Post Viral Fatigue,M.E Yuppie Flu, Chronic Fatigue Syndrome or Fibromyalgia..it stole my life. My diagnosis at the moment is M.E and Fibromyalgia. I am on strong opiate patches and a host of other drugs that treat symptoms not the discease. It almost 1 am I can't sleep if I finally get to sleep it will be an utter waste as I am never refreshed by sleep...God bless us all x 

Commented 7 years ago Jayne 13
1

I urge you to research Morley Robbins and magnesium. Do not supplement with vitamin D!!! I am healing myself and my son. It takes time and research but it works. 

Commented 7 years ago Bec 11
0

I can really feel all your pain. I have felt like I am close to death almost my whole life. I have staved off that deathly feeling for my whole life by finding the cause of things. Heck feeling deathly is like a way of life.

Your 67. WOW. I thought I would be dead at age 19, 24, 25, 28, 29, 31, 33, 34, 43 45, 50, 51 ...

I worked as an engineer until age 49. It was devastating to work with this disease especially the cognitive dysfunction and neuralgia.

I think I know where you are at now. Heart disease has overtaken you. This advice may be too late but

Take nattokinase, serrapeptase on empty stomach 3 times a day.

Also take Ubiqinol, PQQ, Grape seed extract, Krill Oil, Astaxanthin

There are other things to add like maybe NAC.

I know the feeling that when things get so bad you just want to die.

If one is under a care from a doctor then ones chances plummet in turning things around.

 

MY STATUS

I am 61 year old male. My ME/CFIDS/CFS started sometimes before age 6 so have had it 55+ yeats. I saw my first CFIDS doctor in 1991. Cognitive dysfunction and fatique was severe from the get go. I had over 120+ symptoms by age 22. I am my own doctor for last 20+ years. I use all natural medicine. I also had FMS until i cured it 15+ years ago. I had periheral artery disease 11+ years ago which I cured. I also have Occipital neura;gia and Atypical Trigeminal neuralgia but have found a way to manage those conditions ok. I have cured a lot of other things. I am trying to figure out how to deal with methylation problem. It screws up my neurotransmitters and and can affect my neuralgia. I am on autoimmune diet which I am alway modifying over time. I have never been home bound since I approached things from an unorthodox way since I was young.

The best thing for cognitive dysfunction has been magtein. Due to methylation, i can't tolerate b12 and methylfolate.

Vitamin D3 is ok.

My strong advice to anybody who has ME/CFIDS

1) adopt an autoimmune diet. Keep food diary. There are food substitutes for grain like sourdough bread and other categories.

2) Avoid pharmaceutical medications

3) Use natural medicines like supplements

4) Educate yourself and become your own doctor.

5) Boot conventional medicine out of your life including those pharmaceutical doctors

6) Avoid vaccination, fluoridation, GMO foods, processed (most are toxic) foods, mercury fillings etc

The reason there has been no cure for this disease is because the powers that be (New World Order)have implemented a global depopulation program which is death and disablement. They are targeting between 50 to 90 percent of the population. They created this and many other chronic diseases thru vaccinations etc. This planet has been controlled by a group of one or more extraterrestrials for hundreds of thousands of years. They own the politicians.  They ETs will be successful.

 

Commented 7 years ago Darryl 83
2

Until I cured my FMS 16+ years ago, I couldn't get any restless sleep. I think the cause of it could be high cortisol. I started having insomnia problem getting worse the last couple years until I came upon a solution. I take Primaforce Cissus Quadrangularis. It is a glucocorticoid blocker. It works quickly. It may work for you. I sleep very well. You need to get off those drugs. They will destroy you over time. It has no side effects. It also has many other health benefits.

Commented 7 years ago Darryl 83
1

Well, My story seems a lot like yours but I'm thankfully not bedbound.  I just wanted to ask you if you've tried Low Dose Naltrexone (LDN).  The cost is generally not prohibitive.  There's a great Facebook site called GOT ENDORPHINS?  LDN (Low Dose Naltrexone).  When you search, use the all caps as above.  It's an immunomodulator and some people are having excellent results with a variety of autoimmune disorders and ME/FM.  I'm on it and have found it helped my fibro pain.  Other friends have noticed it really helps their energy.  Just thought it might be worth a try

Commented 7 years ago Candace Way 11
1

I'm 42 , struggling with ME/CFS since i was 24 after a terrible mononucleosis. I see some people are well on LDN. My experience is that i have excellent results with provigil (Modafinil) which is also used in MS for neurological fatigue. I'd give it a try if i were you . 

Commented 7 years ago Fabio 92
1

Hugs my dear friend Nita.  No advice from me on how to treat.  We need ligitemit research funding education and support to break down this disease because there are subsets and no one responds to one single tx.  I think our mascot should be an elephant as it is like three blind men trying to discribe an elephant by his ear tail and hoof.  We have to keep sharing our story until people listen believe and support.  Until then we will support each other.  Much love 

Commented 7 years ago Donna 11
1

The two most popular pharmaceutical medicines that have been useful for ME/CFIDS are Low Dose Naltrexone and Neurontin. I tried Neurontin over 20 years ago. Also experimented with LDN. 

Neurontin can be replaced by Taurine, PharmaGABA and Magtein to reduce glutamate exposure. About 18% of the population has glutamate toxicity to varying degrees. People who have Restless Leg Syndrome will have glutamate toxicity problem. See rlscure.com.

For many chronic diseases, the original Lederle minocin patented in 1973 works for many people. It's main way of working is by modulating the immune system andnt as an antibacterial. it did cure my FMS within 10 days. I took it for two years as an experiment. My gut bacteria was fine. Just teeth plaque as a side effect. On the other hand, antibiotics can cause damaging side effects in people so they are a double edged sword. The cost for that minocin was $60 for 60 tablets 20 years ago. The same tablets cost over $2000. The pharmaceutical company that now owns it knows it works so they created another version called Embid at same price. It's appalling they allow such price gouging where it is beyond accessibe for most people financially. Replacements people are using are the Teva and Ranbaxy minocin last I heard. Minocin name has been licensed so minocin doesn't mean original minocin anymore.

 

 

Commented 7 years ago Darryl 83
0

As far as research into this disease, none is needed. The powers that be already know the cause. They would also have the knowledge to cure it. Their plan has always been to give you false hope that a cure is on the horizon. Virtually all the patient organizations are run covertly by the the military intelligence agencies. Many well known CfiDS doctors work for the intel agencies also. Their plan has always been to let you twist in the win.  The reason the disease has the F word is because it s a psyops against the people with this disease aimed to trivalize the disease to the public. Most research is black hole research in that it is meant to lead nowhere. The only silver lining is that as medical scientific tools increase, it will help elucidate things that are broken in us and how to fix them. The last place this information will reach is most doctors hence you will never hear about them. 

In the end, we are casualties of their global depopulation plan.

Commented 7 years ago Darryl 83
1

Dear Nita, I'm 65 now. I've got ME after a viral infection of Rubella at the age of 30. Like you, I never cured, and growing older (since about 50) I got COPD (short of breath) and heart rythm disturbances. I can scarcely step on a staircase. Doctors say at the time you have smoked, so ther's the origin. Did you ever smoke? It seems to me you developed the same symptoms growing older also.

Commented 7 years ago MrZonderland 11
2

I have been having problems with double vision and reading and responding is quite difficult right now.  Thank you all for your comments! Visual problems in ME/CFS are not uncommon and most don't seem to have an answer, but I am have having tests and seeing doctors to see if something can be done. I hope to read all your comments if my vision clears a bit.  

Commented 7 years ago Nita 49

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