Written History Series: Who Was Your First (Doctor)?

[Cort]

I'd like to collect a series of stories of peoples experiences seeing their first doctor with what turned out to be ME/CFS. Then I'd like to arrange it by year - and see if people's experiences have gotten better over time. [fright]

[/fright]The questions I'd like answered at this point are below. Suggestions are welcome.

• Year
• How long you'd been ill
• Your age at the time
• Your situation
• Type of Doctor you saw
• His/her diagnosis
• Your eventual diagnosis
• Your experience

If someone would like to help fashioning these stories into an organized section that would be great. We might be able to get Stavya to create something...

I'll start it off in post below

 

[Cort]

• Year - approximately 1979.
• How long you'd been ill - a couple of months
• Your age at the time - about 20
• Your situation - I was at college at the University of California at Santa Cruz
• Type of Doctor you saw - primary care doctor at the University
• His/her diagnosis - nothing was wrong with me
• Your eventual diagnosis - first ME/CFS then FM
• Your experience - he was a younger guy, blond hair, seemed pretty cheerful as I remember but his face fell when I started describing my symptoms. I was experiencing extreme fatigue, it feel like the blood was pooling in my legs and I remember that my thighs in particular ached and ached. Outside the office we went - he pointed up at the stairs - and said walk up the stairs. I protested - of course I can walk up the stairs, that's not the problem... - he insisted - I walked up the stairs - he said the fact I could do that meant there was nothing wrong with me as I remember. My first introduction to the medical profession with ME/CFS was not a good one. In fact I only had one other really bad one - that one happened to be with a school doctor as well. This was well before ME/CFS was known.

 

[JennyJenny]

Fibromyalgia:

74

Pain for several months.

13

Junior High

Family Doctor with a Referral to an Orthopedic

Myofacial Pain

FM

It took 25 years to get a Fibro diagnosis and I read about it and realized this is what I had. A homeopath diagnosed me after I sent him the paperwork before reading about Fibro and let him diagnose me. HR recommened I see a Rheumatologist and he also diagnosed me with Fibro. But it was too late as in about 6 months I had to leave my corporate job even after pulling back to part time. Little did I know I also had ME/CFS.

ME/CFS:

1979

White spots on the back of my throat. Somewhat tired.

17

Senior Year

Family doctor who referred me to another, possibly infectious disease specialist. Family doctor said I had Mono and had the specialist confirm that was what I had and all I had.

Specialist who read my blood tests told me I had the worst case of Mono he ever saw. Leave school immediately. Back to my family doctor who said no school or work for months and not to return to work until after the school year was over. Family doctor did say to me, "You will never have the energy you once had."

CFS diagnosed at age 42 after years and years of progressively getting worse. Did work all this time, had a social life, sometimes went to gym and so on but always compromised. If I had not been compromised I would not have had to live at home, I knew "something" was always wrong but could not define it. Around age 32 my new Family doctor sent me for a table tilt test and I fainted but was told to eat salt. Finally around age 40-42 a Rheumatologist and Psychiatrist diagnosed me with CDC definitions. If I was 40, whatever definition then (2000/2001 or so) and definitely when Psychiatrist also diagnosed me it was 2002/3 so I believe that was Fukuda. Through the years my initial family doctor, prior to his retirement, would keep saying you need to get rest you need to get rest. I think he knew I was hit with "something" and he was a former army doctor who could treat anything but they had no real proof of anything back then. I had tried to work after leaving corporate job at 38 only being diagnosed with Fibro not knowing I had ME/CFS and a Rheumatologist told me that whatever I do, keep walking. I decided to do dog walking and pet sitting and was able to do so for about 4 years until I had a nervous breakdown which I believe was the only way I could understand to STOP, that I had just done the wrong thing and was now permanently disabled at 42.

 

[JennyJenny]

Under CFS:

Sick a few days when I had the white spots and tired when I saw family doctor.

With my onset dates for both I lived 1/2 hr. West of Philly, PA. Pollution, rapid changes in air pressure, mold in air, humidity, rains and cold snowy winters.

 

[Cort]

Fibromyalgia:

74

Pain for several months.

13

Junior High

Family Doctor with a Referral to an Orthopedic

Myofacial Pain

FM

It took 25 years to get a Fibro diagnosis and I read about it and realized this is what I had. A homeopath diagnosed me after I sent him the paperwork before reading about Fibro and let him diagnose me. HR recommened I see a Rheumatologist and he also diagnosed me with Fibro. But it was too late as in about 6 months I had to leave my corporate job even after pulling back to part time. Little did I know I also had ME/CFS.

ME/CFS:

1979

White spots on the back of my throat. Somewhat tired.

17

Senior Year

Family doctor who referred me to another, possibly infectious disease specialist. Family doctor said I had Mono and had the specialist confirm that was what I had and all I had.

Specialist who read my blood tests told me I had the worst case of Mono he ever saw. Leave school immediately. Back to my family doctor who said no school or work for months and not to return to work until after the school year was over. Family doctor did say to me, "You will never have the energy you once had."

CFS diagnosed at age 42 after years and years of progressively getting worse. Did work all this time, had a social life, sometimes went to gym and so on but always compromised. If I had not been compromised I would not have had to live at home, I knew "something" was always wrong but could not define it. Around age 32 my new Family doctor sent me for a table tilt test and I fainted but was told to eat salt. Finally around age 40-42 a Rheumatologist and Psychiatrist diagnosed me with CDC definitions. If I was 40, whatever definition then (2000/2001 or so) and definitely when Psychiatrist also diagnosed me it was 2002/3 so I believe that was Fukuda. Through the years my initial family doctor, prior to his retirement, would keep saying you need to get rest you need to get rest. I think he knew I was hit with "something" and he was a former army doctor who could treat anything but they had no real proof of anything back then. I had tried to work after leaving corporate job at 38 only being diagnosed with Fibro not knowing I had ME/CFS and a Rheumatologist told me that whatever I do, keep walking. I decided to do dog walking and pet sitting and was able to do so for about 4 years until I had a nervous breakdown which I believe was the only way I could understand to STOP, that I had just done the wrong thing and was now permanently disabled at 42.

Keep walking - that didn't turn out to be good advice

Your old primary care doctor had seen it before - isn't that something......

 

[San Diego]

Your old primary care doctor had seen it before - isn't that something......

That was back when hometown doctors knew their patients and actually looked at and listened to those patients rather than tests and computer screens. I’ll bet most of those old-time doctors were very familiar with these illnesses.

1988 - Wicked “flu” with 106+ fever and encephalitis:

*Treated supportively only, with no antiviral therapy.
*After this I required much more sleep, without which I would get what I now know to be PEM
*Otherwise functioned at a very high level and did not report to doctors.

2007 - High life demands and repeated URI’s; classic ME/CFS symptoms dramatically increase:

*Saw many doctors (GP, Neurologist, Gastroenterologist, Endocrinologist, Psychiatrist, Gynocologist, Otologist, Pulmonologist, Geneticist, Nephrologist, etc)
*Despite history of very high function, was repeatedly told nothing was wrong; or, if an abnormality was found I was labeled “uncooperative” or abnormalities were pigeon-holed and ignored.
*Repeatedly prescribed antidepressants and anxiety meds (which I refused).
*Given hormone creams and told to “smear these on your boobs until you feel better, and stop coming back here.”
*Kept pushing hard at work and exercise, as recommended by doctors

*Remained moderate with increasing frequency and duration of down spells until …..

2012 - Total collapse:

*Finally diagnosed with ME/CFS, but had to fly across country to get diagnosis.
*The physiological stress of flying (due to what I now know to be dysautonomia) and IV glutathione caused me to crash to severe, from which I’ve yet to recover.
*Wasted $ thousands on said "CFS specialist’s” private label supplements.

2014 - Accepted at INIM.
*Began treatment with ME appropriate drugs - Inosine, Famvir, dysautonomia meds, sleep meds, etc.
*Remain severe - housebound / bed bound

 

[JennyJenny]

That was back when hometown doctors knew their patients and actually looked at and listened to those patients rather than tests and computer screens. I’ll bet most of those old-time doctors were very familiar with these illnesses.

Our appointments were always 45 minutes to an hour and a half. And when he went to see my mom in the hospital the woman in the bed next to her said she was amazed that he stayed so long. It was like a cross between a medical visit and a circus show.

 

[JennyJenny]

Keep walking - that didn't turn out to be good advice

I was only diagnosed with Fibro at the time but I don't think heavy exercise is good for Fibro either so it was still not good advice. But it was disastrous that they did not stop me once they knew I had ME/CFS.

My friend's daughter was told by an alternative doctor (she had no insurance and whatever doctor she is seeing does not charge her much) you cannot keep going at the pace you are and when you feel better do not push yourself. So, to some extent I think they are catching on and the word is getting out, we have PEM and it can put us into a bed bound or wheelchair situation.

 

[San Diego]

It was like a cross between a medical visit and a circus show.

The good old day, indeed!

 

[weyland]

• Year - 2014
• How long you'd been ill - A few weeks
• Your age at the time - 32
• Your situation - Previously fit and healthy, came down with a severe respiratory/gastrointestinal infection, progressed into vestibulitis and then ME
• Type of Doctor you saw - Family physician
• His/her diagnosis - Stress
• Your eventual diagnosis - ME triggered by enterovirus infection
• Your experience - Not a good one, despite my doctor having a great deal of experience and being in one of the top rated health systems in my state. None of the doctors that I saw in this system could make a diagnosis. After months of symptoms with no relief and many office visits, my doctor finally decided I was just stressed and encouraged me to take an SSRI. I fired him, diagnosed myself with the help of the Internet, found a new doctor and begged for referrals to Stanford CFS clinic and Dr. Chia who both confirmed the diagnosis.

 

[Folk]

• Year: +-2008
• How long you'd been ill: Just started having some pain 1 year before in the shoulders. It became to spread through the neck area and my back and it wouldn't go away.
• Your age at the time: 19
• Your situation: Student at the University.
• Type of Doctor you saw: Rheumatologist
• His/her diagnosis: No diganosis that I can remember (perhaps chronic pain). He suggested Neurontin or Hydrotherapy though.
• Your eventual diagnosis: Miofascial Syndrome then later FMS then later ME/CFS.
• Your experience: He litteraly point the finger at me and said "Go fuck yourself" cause he gave me 2 options "Nuerontion or hydrotherapy" and said if I took Neurotntin I would have to quit drinking (I was a teenager not an alcoholic). I said I would go home and think about it and he said "No you should decide it right now" and completed by saying that my way of reacting was just a proof that I was an arrogant stressed teenager. My mother was on the appt, she agreed with every single word and quoted him for years to come (never saw such a big smile on her face). Needles to say I walk out and didn't take the neurontin, neither did the hydrotherapy.