Poll Do You Have Progressive Chronic Fatigue Syndrome (ME/CFS)?

[kevin Feldman]

First let me point out that inevitably the people who don't recover tend to be on these forums while those who do move on. This is not a representative survey of people who develop problems. Adolescents tend to do better.

Secondly I have a vibration machine, unfortunately I had to stop using it as it was making me ill. I recommend free weights to maintain muscle tone but you need to be very careful of aerobic exercise. Your daughter needs to be careful with diet but when bedbound its difficult to eat little enough to maintain weight without also missing out on important nutrients.

Thirdly there are more promising developments in ME than there has ever been. An article you may wish to read http://www.psychiatryadvisor.com/op...-in-chronic-fatigue-treatment/article/405424/

Why does the articlle say ot works with "high Igg" My igg is low with cvid and I am trying to get the levels up

 

[Tina]

I remember the month (May 2007) I got sick the first time. It was a slow recovery, but over about three months everything was back to normal except that my energy was lower. However, by adjusting my life I was able to get by without anyone noticing. Almost 12 months after that illness I can tell you the moment I became ill. 3:30 a.m. on June 8, 2008. I would say mostly I have had a slow downward progression the whole time. The only time I had a slowing of progression was really due to editing my life to include more rest. Gabapentin has helped with neurological symptoms.

 

[kevin Feldman]

Mine was just too wild and crazy,,,4 years ago at the peak strength of my life I had triple bypass but also got a post -op sternal infectuon , (not that common only 1.5% of men get it) went home 5 days after surgery, back in hospital 4 days later with vanilla yogurt pouring out of chest, stayed 3 bad weeks, opened up again wound vac icu all that crap. Left hospital wearing picc line next with anti-biotcs every 8 hrs 24/7, as itt came back had final surgery ( again) opened chest took out sternal wires.....I never regained all my strength, the whole hospital thing did a trrip on my head, Dec 2013 under stressful condition with no sleep for days had shingles and did niyt treat fr over 7 days ( bad) , 3 weeks later most noxious virulent viral flu of my life coughing up the green gook and sinusitos the worst, never had a cold of fku in my life ( Ok maybe 2-3) ,never sick, along with that my ankles fill up with fluid edema, gain 31 lbs in short period of time, legs below knews numb, went to see cardiologist april 1, all fine blood all fine except super high non fast glucose (222) , got edena down wearing medical boots as soon as they came offf april 5, all hell nroke loose, first thumb toe, then foot then feet then hands, wrists elows monster neuralgia, panful seizures for hours so bad I was rolling on garage floor (first time I asked man upstaors to take me he had no interest), could not waalk for 4 weeks, plantar, hyperalgesia , alloydnina , ankles, achilles and soles felt lke someone took a skedge hammer and smashed them, anyway tmi i spring 2014 I had fatigue just monderate and was overshadowed by the nueralgia and joint pain mixed, On July 3, 2014 the pedominence opf neuruopathy changed ti arthralgia like joiny pain ( all bilateral and symmentric), on july 7 my head and necjk bent down and to the right and has never straugthened up ( I limp aroing playing ygor to my wife), I had already been to over dozen Drs and johns hopkins twicve, all they could come up with is idipathic neuropathy. I knew in April there was not going to be any Dr t give me a DX, I didn't know it at the time but I had brain fog, I knew nothing about medicne except some basic excercse phisiology, I had insomnie snce december I did not sleep more that 2 hurs a night and most none, I started reading and reading aand reading every other word in wiki read something 5 tiimes get nothing finally enough critical mass glossary got in and I slowly leared all the major domain systems, I reall picked u steam by september , I had a 2 day uptick mid august as I spent weeks getting Iv Nutrient cocktaisl every day, still had afternoon nalaise, finally octobetr had psoriais flare in ankles by nv i provisionaly DX myself with psoriatc arthritis and I knew I hjad hpa issues but each time i started to get DX I still felt like it didn't cover the multitide symptoms I had all these drs and I went to 14 specialsis at least takes time to test and get results and get offoce appts ipressed as hatd as I could because I knew whatever hit me in april 2014 was turning acute tyo chronic and ihad yto know wtf waas going on, I jhad hypogammaglob in nov 2014 and dec 15 official psA dx, march 1 official CVID and then it started to become clea, ffirst the fatigue turned to killler pem worse and worse, then the ataxia worse and worse while tracng down anemia and b12 deficiencies i somehow linked into CFS and as soon as I read the forst few lines I knew I found my new home ...the I started to peal away that onion and you know how invlolved that is. I filled in all the boxes, went back and checled pcp bidy temp readongs going back 18 months sure enugh all 97.3-97.8 and then all the rest just last 5 weeks the earache and tinnitus so yes my path was a slam down with me cfs april 5 2014, subsequent steady decline wity existing symptoms intensifying and new omes added along the way..culminating in my not being ablle to climb my stairs last sat nite...have I followed the adivice to rest and not exert ...no way, only stop when my bidy slams me down into coma like place, then get up and grind it out I am 16 months from Onset, I justt told my me cfs drs I only pass the 2 year mark one time. I read all you guys,I read bell, hyde the founding fathers and I read lipkin/hornig and all I know I have to make a stand now or its gonna titall suck for a long time. My tests hit all the buzzers, viruses galiore, EV, CMV,HHs-6 CoxB , Varicella, my heart rate just tied 1st place the guinness worlld book of records during sleep (26) , bradychardi, tchychardia, brady/tachy ( 125 to 26 in and instant), sleep apnea, the , autoimmune, just like some of you have written...endlless list I think Im up tp 53 now...so thats the story my plan, build up immune with kpax and bucnh of supps i never take, swallow some ldn when i can remember to a, increase my ivig dose from 22.5 up nd tale it bi weekly for autoimmune and then strt modulating and virus killing when immune syetem better, I dont want to wait I want to kill viruses now..we shall see I don't think I fit intro a promising prognostic group stay well all

 

[kevin Feldman]

sorry for all the typos , im multi tasking ( yeah right) , I don't know whats worse getting the affliction starting at mid-moderate and moving to mild-severe, or dealing with treating it ( drs, appts,tests, results, pharmacies, infusions, treatments-) It sucks up all my time and energy .
Im convinced this terrible disease and all that comes with it stems from one of 2 forces:
1. Darwinian waves at work
2. Biblical, mythical
There can be no other explanation of a plague of this magnitude being unrecognized. I ve never been a very religous person but ..I say its Biblical. Has to be ...I must have been a bad sinner

 

[Tonto]

My body was not right far back as I can remember as a child. Had trouble with knees, lived under a great deal of stress due to an emotionally abusive mother. Always had problems with my monthlys. Had severe cramps due to endometriosis starting at age 14. Have increasing problems with being cold, allergies, food sensitivities and fatigue. Handle stress at this point very badly. I'm age 63. My normal temp runs 97.?. Spend more time at home and have less energy than a year ago. Have Idiopathic Peripheral Neuropathy and all my joints and muscles, etc. respond negatively to below freezing temps or high heat temps. The least whatever that is on my food such as lettuce that is not properly washed in a restaurant reeks havoc with me. I can have vomiting and diarrhea from eating something and out of everyone that eats the same thing as me, I'm the only one that gets sick. I can't walk as much as I used to due to pain and fatigue. Eyes are blurry every day. In short, every day is a struggle and I'm not getting any better.

I experienced most of the things you describe but I HAVE had periods of 'getting better'. When 'ME/CFS first struck around 1990, I instinctively paced myself back to 90% health - then forgot to 'pace' and had a full-blown relapse which has stuck around for most of the last 10 years but I STILL have remissions. I'm having a really long one at the moment. More than one full month so far! I live in a very deprived (UK euphamysm for plain poor) with petrochemical plant emitting toxins including ?levels of benzene on my doorstep. I regularly give up and consider suicide but my life force (damn it) burns too brightly and I am forced to keep going and trying something new. I've had years of psychotherapy for my childhood trauma. Interesting what you say. I have low basal temperature to the point that when I have an infection, my GP won't take me seriously until I start hallucinating and behaving strangely. I'm usually packed of to the psych ward with a diagnosis of psychosis and although my doctors will never admit to being wrong - I am handed a small pot of pills regularly laced with antibacterials! I don't think I do get psychotic, I think it's late stage infections but because I don't have a temperature much higher than normal, I get THAT ill before I am diagnosed!!!!!

 

[Puti]

If you, whoever, have persistent, flu-like muscle pains, have your creatine kinase (not to be confused with creatinine or creatine) measured from your blood. Elevated creatine kinase level suggests that your muscle tissues (especially skeletal muscles) are bothered by something, for example an atrophying autoimmune reaction. Severe muscle injury (as in an accident) can raise the creatine kinase level to astronomic figures.

If you suspect a heart ailment, have troponin level measured, too.

 

[Cort]

I suffered from horrible migraines which I first fainted with at 5, I often lost my vision n needed polaroid sunglasses. Then had bad swollen n painful knees at 9-10 then glandular fever at 11, which lead to depression n GF recurring.

Ever since I remember trying my hardest to cope with pain, tiredness, depression n just feeling ill. Drs would say, cos u smoke, ur over weight etc n treat me like a hypochondriac. Family too. But then I didn't go til couldn't bare it which often meant I was in really bad need of antibiotics of even ambulance. Had bad widom teeth but reality was TMJ, bad periods, eyes blurring, straining to hear clearly, trigger fingers n other joints needing injections into them etc til finally diagnosed with Fibro at 37 ( later, ME n SAD) by then couldn't walk from one lamppost to another without stopping, pain levels high so started buprenorphine patch on top of other meds.

Things just cont to go down hill all my life, now find it hard to get out much at all, can't stand or walk more than few mins at pigeon pace, that's if I not swaying or shaking too much. Wheelchair been God sent but often find the paths to uneven n painful n buses are agony. Wake most nights doesn't help.

I empathise with u all n life events, history, relationships, struggles, poor health n over working all seem to have played big parts. I whole heartedly recommend u cut right down contact with friends nfamily that don't wanna truly try to understand cos life is hard enough n any negative emotions or abuse has bad physical consequences.

It's not all in our head who seriously would make up they had difficulty to see, hear, speak, eat, sit, walk, wash, write, think, sleep, let alone how difficult chores are n thats before u factor in the pain which allows no other thoughts at times n always there just incase u wanna try again.That would be unreasonable to believe, but that's what we cope with everyday.

Hope u all find someone to share experiences with, to support each other n have a good laugh over ourselves cos it is by far the best medicine. X

People with just migraine are often in the same boat...Check out this blog - http://www.cortjohnson.org/blog/201...omyalgia-and-migraine-the-legitimacy-problem/

 

[dee]

ME EVERYDAY NOW!

 

[Justarose123]

Can't get out of bed without my Meds so yeas I believe I most certainly have some kind of burning fatigue desease. Sometimes I get exhausted from thinking to much?

 

[Seeksassy]

It is common practice for doctors to at least double what patients report to drinking. In fact, it’s a joke at many CME conference lectures, with a nod and a wink and laughter all around.

I can’t help but think that attitude extends to all areas of the history taking portion of an exam. Discount this symptom by 90%, elevate that reported behavior by 75%, etc etc etc ...… all of which makes one wonder what they do with our escalating symptoms! Thus the need for patient polls rather than doctor reports!

I find this shocking! I guess someone might like to their dr, but I sure don't and certainly expect to be believed. I hope this is exaggerated, because my docs seem to believe me and I really want to believe it's sincere.

 

[katvil]

The Progressive Form of ME/CFS

Different forms of disease abound. There are different types of breast cancer, there's the relapsing-remitting form of MS and the progressive form and different types of depression.[fright]

View attachment 568 [/fright]hey are slowly being uncovered in ME/CFS. Health Rising recently highlighted a "relapsing-remitting" form of chronic fatigue syndrome. Now Ellen Goudsmit and S. Howes ask whether a "progressive form of ME (or ME/CFS) should be differentiated from a non-progressive form.

Howes S and Goudsmit EM. Progressive Myalgic Encephalomyelitis (ME) or A New Disease? A Case Report. Phys Med Rehabil Int - Volume 2 Issue 6 - 2015

Surveys suggest that most people with ME/CFS or FM do get a bit better over time. A small subset - probably early in the disease - get well, and a subset of patients get worse over time. Few long term studies have, however, been done. (The Simmaron Research Foundation is engaged in a study of the long term effects of ME/CFS. )

A Case of Progressive ME/CFS

First Howes and Goudsmit illustrate one case of progressive ME/CFS. The women they describe appears to have never been completely well. She experienced periods of weakness in her legs, nausea and dizzinness throughout her childhood. She was tested for rheumatic fever and took prophylactic penicillin for 6 years. Her dizziness and muscle fatiguability got worse as a teenager. At 18 she was diagnosed with infectious mononucleosis (glandular fever). Diazepam helped with her dizziness but after developing a tolerance to it she stopped.

She was able to get through college and do postgraduate work. Around this time she was diagnosed with myalgic encephalomyelitis. A cold at age 40 triggered dizziness so severe that she became housebound. She also developed multiple chemical sensitivity. Betahistine, prochlorperazine, antihistamines and rehabilitation exercises were little help but a gluten free, low sugar diet helped her to be able to get out of the house and complete her University degree from home. CBT helped with her nightmares but nothing else.

Her major deterioration, however, began in her fifties with a seemingly innocuous gut problem. She experienced fecal and urinary incontinence, low blood pressure (89/55 mmHg), loss of fine motor co-ordination, tremor, tingling in her hands and feet, difficulty breathing at rest (muscle weakness), clumsiness, episodes of sweating and dry eyes and mouth. Blood tests for Sjogren's Syndrome (not always accurate) and other disorders were negative. She was also diagnosed with osteoporosis and cervical spondylosis.

Her neurological symptoms sent her to a neurology clinic where an MRI found cerebral white matter issues in the posterior frontal regions and parietal and temporal lobes (but not the brainstem, basal ganglia or cerebellum.) The neuroradiologist concluded she had "progressive white matter" changes that were not indicative of any known diseases such as MS, small vessel disease or CADASIL. She, like so many others with ME/CFS slipped through the cracks. She is an enigma.

The Progressive Form of ME/CFS

The authors propose she has the progressive form of myalgic encephalomyelitis (referred to as ME/CFS in this blog.). They assert that the post-exertional malaise she has experienced for years, the central nervous system involvement (dizziness and vertigo), the circulation problems (heat intolerance, symptoms worsening after a hot bath) are all part of one disease process.

They note that progressive form of ME/CFS is poorly documented and rarely covered in the literature. Few studies of the long term effects of ME/CFS have been done. In general most people with ME/CFS are presumed to get a bit better over time but it seems clear that a significant percentage of patients get worse.

A Heterogeneous Group[fleft]

View attachment 569 [/fleft]

This woman is just one example of progressive ME/CFS. Scratch the surface and variety of different patterns show up.

• Short Term Progressive - Whitney Dafoe. Before ME/CFS Whitney was healthy. He appears to have had a mostly gradual onset with his health shifting downward over time. After a trip to India, however, his health dramatically worsened over a relatively short period of time. Six or seven years after disease onset he has one of the most severe cases on record.
• Long Term Progressive - Unlike Whitney the person referenced in the paper had periods of ME/CFS-like symptoms throughout her life. She was healthiest when she was a child but even then experienced symptoms severe enough for her to be tested for rheumatic fever. Three events, two of them infectious, triggered a worsening of her illness: infectious mononucleosis/glandular fever during adolescence, a cold when she was forty and then a gut problem when she was fifty. She appears to been disabled but relatively functional until her fifties when her neurological problems skyrocketed after an apparently a gut problem. She's now described as being "severely disabled" but stable. It's seems likely that whatever caused her initial dizziness problems expanded and expanded over time.
• Mildly Progressive/Regressive - I had no significant health issues as a child. I came down with a "gradual" (on the range of a month) non-flu-like onset of ME/CFS while in college. My ME/CFS symptoms were worse in the beginning and got better over time. I developed several comorbid conditions (severe multiple chemical sensitivities) and mild IBS, neither of which impacted my ME/CFS symptoms (fatigue, PEM, etc.) at all. You could put me in a group with progressive development of comorbid disorders but somewhat regressive ME/CFS.

ME/CFS (and FM) patients are clearly going to show a great deal of variety in how their diseases progress. Understanding the stages of progression - what proceeded them and how they occurred - could provide insights. Different subsets of progression might be uncovered that help us understand the subsets present in the broad disorder. These kinds of inquiries are common in other illnesses. They have hardly been explored in ME/CFS.

What forms of progressive ME/CFS do you think are present?

Characteristics of Progressive ME/CFS

The authors proposed that the key characteristics of progressive ME/CFS are

1. A worsening of existing neurological symptoms or new symptoms, e.g. blurred vision in one eye, weakness in one leg, incontinence.
2. A sudden increase in sensitivities and gastro-intestinal symptoms.
3. Any improvements are limited and the disability tends to show a downwards trend.
4. The patient has to spend more time at home or in bed.
5. The development of new auto-immune diseases or symptoms suggestive of the latter, particularly Sjӧgren’s syndrome.

(I altered the characteristics a bit for the poll. I added the development of co-mordid diagnoses such as irritable bowel syndrome, interstitial cystitits, temporal mandibular joint syndrome, migraine, MCS, fibromyalgia, anxiety and depression. I also added tingling, burning, numbness sensations to the neurological symptoms. I joined a downward trend in disability with spending more time at home or in bed and added gynecological disorders.)

I realize I'm replying to this nearly a year after the original poll, but as I get older and get worse, I am terrified by the thought of my future and wonder what others plan to do.

If I continue on the path I am on, I will soon have no money, no transportation, nowhere to live and homeless. I have no one to help me, no one. I have tried to communicate this to organizations in my area that supposedly "help" the disabled as well as my doctors, not one of whom gives a damn. These organizations that "help" give me information on who or what group I can pay to help me since apparently I must need to be entirely penniless, homeless and without any form of communication before I can qualify for free help, if that's offered anywhere.

I don't want this future for myself, but all the money and time I spent on various treatments to get well have failed. I just continue to get worse.

Does anyone know what becomes of those with progressive ME who have no family or friends to help them? What should I expect or plan for? I can't do basic math anymore or even walk to the mailbox. My mom, who I live with now, will not be around forever or be able to live for very long independently and I come from a family who thinks I'm lazy and am not sick and have never been. I am barely online anymore because I have no memory of what to do and how to do it. How are others coping? Cause I just have no idea and nowhere to turn. Can anyone help me?

 

[katvil]

I had to clear the tears before I could respond to this. Like Whistle Blower and Telula, I have felt very alone in this aspect. It's been overwhelming to me lately that I seemed like the only one who, no matter what I do, continues to get worse, but apparently, I'm not. So thank you Cort for bringing it to light and helping us feel not quite so alone.

I continue to get worse too.

 

[tearydawn]

What forms of progressive ME/CFS do you think are present?

Is it possible that this is just a different form of MS? How many of us have brain lesions? I'm being monitored for MS at the moment. I've had symptoms for 16 years starting in the military post vaccinations. I do have small lesions in my frontal and occipital deep white matter. (periventricular) There are supposed to be 5% of MS sufferers who have 0 lesion load. Could this be the group or a form of MS without the lesions and PEM being the hallmark symptoms? I was finally diagnosed with CFS in 2016 after so much testing and negative results. My fibro flared first in Nov 2014 then in Feb 2015 I had my classic flare (MS?) with blurry vision and dizziness, vertigo, and balance issues followed by a numb lower right leg which stayed that way for almost a year. Finally had an MRI in July 2016 which showed the lesions but did not get a diagnosis for MS as they are taking a wait and see approach. I'd have to check my med records (brain fog) to see when my CFS flared up but I believe it started showing gradually after my fibro flare but not fibro as more consistent with my flu like illness, body aches, chills, muscle pain. These symptoms have consistently gotten worse. I've had these symptoms as well over the last 16 years but not at the level I see now. So Relapsing till finally primary progressive course just like MS. Just my thoughts.