Do I have ME/CFS?

Want some insight from people who do have it so I can figure out which direction to go:

3 years ago I suffered a bad reaction from a drug OD which led to palpitations, anxiety, and fatigue. The palpitations and anxiety have rounded out over the past three years and can be managed. My fatigue however has gradually gotten worse over the last three years and has stabilized to where I am constantly tired. I can exercise, and do very vigorously 4-6 times per week. I lift weights, run, and train for a competitive Rugby team. I do not suffer worse fatigue the next day after exercise, it is the same as when I don't. I do not experience muscle weakness or pain. However I am dead tired almost all day every day. My fatigue is more mental and feels like I didn't sleep well. I also seem to get sick often and have lots of sore throats, ear aches, etc.

I have been evaluated by many doctors, endos, neurologists, sleep specialists and usually they either tell me nothing is wrong or they say they don't know. The only "wrong" thing I had was mildly low testosterone levels, so I am on TRT to boost those to high-normal levels, which helps slightly. I tried thyroid supplementation for a TSH slightly over 3 and that just made me worse. The sleep specialist says I have hypersomnia (you are tired and we don't know why) and put me on Ritalin which doesn't seem to be helping. I also have brain fog and my memory is shot. I also have gotten to the point where alcohol hangovers are completely debilitating for me which they never have been before.

I have been tested for lyme disease and that came back negative. I also ran a ~6 month course of antibiotics for prostatitis (which is now gone) and felt no better/worse on that, so I can conclude that I definitely do not have lyme disease.

At this point either I have a form of PTSD / HPAA dysfunction or CFS. Which do you folks think? Any advice?

Thanks a lot.

 

based only on what you've posted IMO you probably meet the CDC defintion of CFS but you dont meet the CCC defintion of M.E. (which has post exertional malaise as a primary symptom) as I understand it.

However PEM isnt always physical - have you tried laying off the exercise etc for a week or two and see if your cognative issues improve? If it did it still wouldnt be more than suggestive - ie it doesnt prove anything - eg. adrenal issues could cause your symptoms and respond postively to rest

I cant really offer suggestions as to whats wrong with you as a lot of conditions could cause the symptoms you mention but I'd advise further investigation as something is clearly wrong which needs sorting - but M.E. is a diagnosis you dont want

 

I just seem to be functioning at a very high level for someone with REAL CFS.

I mean I work a full time job, am in graduate school, play a sport, and exercise often. I am just really, really, really, tired and foggy. When I take the "Do I have CFS test" on the CFS website it says I don't, because it has not made me majorly change my life. Is there anyone here with CFS that is like me?

 

I would have to say that you don't have CFS, but there is definitely something wrong. A couple of things come to mind, such as mercury poisoning (from mercury fillings), or gluten intolerance/celiac disease. Adrenal fatigue is also a possibility.

A naturopath or holistic doc would most likely be your best bet. Look for somebody who uses electrodermal screening to determine which body systems are not functioning and which supplements would jive best with your system.

Also, take a look at Sherry Rogers' book "Tired or Toxic" and see if that rings any bells.

 

Sorry but I don't buy any of the diagnosis' you've mentioned. "Adrenal fatigue" = HPA disfunction, maybe, but I don't buy the fatigued adrenal glands stuff. Thanks for the response though.

 

A whole host of conditions could cause your symptoms - anything from an allergy/intolerance to cancer - I would rule out M.E. as the number of people with M.E. that can hold down a job, run, lift weights and play on a rugby team for 3 years is probably zero. This isnt the same thing as ruling out CDC CFS as apparently you can work 80 hours a week with that

I have no idea why you are dismissing an adrenal issue (overtrainign syndrome) so rapidly - it causes fatigue, one of the first symptoms is sleep issues, the fatigue caused by that causes some further cognative, hormonal and immune issues etc. and even with total rest it can take many months for improvement - and it doesnt have PEM as a symptom - based on what you've posted it seems a possibilty

but as I said before I cant diagnose your problem/condition, IMO it's highly unlikely its M.E. but what do I know - I'm not a psychiatrist

 

You don't have to post it here but what drug you overdosed on and what happened during the overdose might have an effect on how you feel. Also, if you are still taking that or other drugs, some drugs have both short-term and long-term effects. For example, people who have used cocaine chronically can have mini-strokes or heart failure. I'm not here to debate this but my friend who has used marijuana in the past and still has peripheral contacts with people who use/ used it chronically have told me that she sees chronic health effects from it despite others saying it is safe.

I'm also assuming that you are now drug-free.

 

Hope123, Good point. I am not judging by any means, trust me. But on another board I belong to, which is strictly for dysautonomia, there is another person who overdosed on some recreational drug(s) (not sure which ones(s)) and developed dysautonomia as a result.

 

I have been studying AF for years - literally since this started. I have seen many different theories on it, and even more treatments. They are all RADICALLY different. That is why I can't put any faith in it. I even tried AF supplements for 3 months - no improvement. The most forward thinking AF folks (Mariano, Crisler, etc.) now believe that AF is a bad term and should be called Secondary Adrenal Insufficiency, and is caused by a malfunction of the HPA axis. Crisler advocates cortisol, and Mariano says there are other, better ways to treat. I can buy the HPAA dysfunction theory, but I just can't buy the idea that the gland is simply tired theory - it just doesn't make medical sense. You guys around here seem to bash Teitelbaum and guys like him - guys like him are big AF promoters.

The drug I OD'd on was cocaine, but I really didn't do very much during my OD. Either it was cut with something or I just freaked out. It was really an OD/anxiety attack.

Medically, I check out perfect (heart, brain, etc.).

So the consensus seems to be that this cannot be ME/CFS because I am too functional. Anyone disagree with that? I am very interested in this disease, and hope that the XRMV stuff pans out.

Thanks everyone for your insight. I am not trying to be combative if I am coming off that way, just sharing some of my opinions as well.

 

i agree with wonko, you need to look into over training syndrome, low testosterone is a sign also a higher then normal resting pulse when first awake in the morning. Im an x league player/weight lifting(olympic style) etc and if someone trains as much as you say u are and not tired or actually making gains in training then your probably on the juice. As a natural trainer with that sort of volume of training u need to look at taking regular breaks or deload training weeks or sometimes they call it active rest where all u do for the week is walk. Some guys suggest an active rest week every 4 weeks. But if u have your self in the over training syndrome state now all u can do is rest like about 6 weeks and then evaluate. training hard and trying to overcome fatigue with supplements wont work, u need a break. Also i would suggest getting your dhea levels checked and if low treat with dhea supplements, dhea has a knock on effect with other hormones and may increase your low testosterone levels. Some people are so addicted to training that they wont take time off and think they will lose all their gains, but if u keep pushing u will lose your gains. Muscle memory i beliebe is true, anything u do lose when u get back to training u will soon get back to where u left off

 

in my early days of cfs where i wasnt sure what was going on, i was trying to do alot of olympic style lifting, hoping to go into comps. But i think all the pushing i did got me to the stage where i was knackered and at a state where i had to consider what i was going to do work wise as i couldnt keep up the pace. In saying all this i use to take regular breaks from training etc before cfs and my cfs started from 2 viral infections close together, so my fatigue was more of a classic post viral cfs, not an over training syndrome problem, although trying to train with cfs made me alot worse.

cheers!!!

 

Welcome to the board

Medically, I check out perfect (heart, brain, etc.).

So the consensus seems to be that this cannot be ME/CFS because I am too functional. Anyone disagree with that? I am very interested in this disease, and hope that the XRMV stuff pans out.

Thanks everyone for your insight. I am not trying to be combative if I am coming off that way, just sharing some of my opinions as well.[/QUOTE]

I hate to say it, but, I think you belong here!! Welcome!!

I think that there will eventually be factors showing relapsing, remitting, and progressive "disease" with us.

I think that you need to get other stuff ruled out, and more testing with your heart, including getting your own monitor which may help you identify any dysautonomia. I can identify with you although have never taken any illicit drugs. I am now 60 and believe that if I had known many years ago might have been able to hamper the progression.

glen

 

Heart has been worked up ad nauseam with holter monitors, echos, stress echos, etc. etc.

I have no structural issue.

Overtraining is NOT the issue. This came about with very moderate to no training. I have gotten more and more physically active in SPITE of my fatigue.

The problem is that anything else remaining is really a clinical diagnosis and CANNOT be ruled out.

I either have:
CFS
PTSD (what psychiatrists think I have)
HPAA dysfunction (what my neuroendocrinologist is leaning towards)
hypersomnia/narcolepsy (what my sleep doctor thinks I have)

If I saw a lyme disease doctor I guarantee he would tell me I had lyme disease.

It really depends on what specialist you are seeing, and what they deal with. That is what you will get diagnosed with. Which one is correct however?

I personally am leaning towards the HPAA/hypersomnia/narcolepsy combo. I have a hard time buying the fact that I had a dormant virus lying in my system that was suddenly set off with an acute stress reaction. If these doctors would finally identify XMRV as the source of CFS then I could get tested for that at least, and check something off.

 

Adrenal fatigue (or whatever you want to call it) does exist, because I have it. My 24 hour cortisol curve is almost a flat line, way below a normal curve, and then it rises a bit at night. This is common in those with CFS. A normal curve would be highest in the morning.

In any case, if you took glandulars you should have noticed something in about a month, so that doesn't sound like you.

Now that I think about it, overtraining does sound like a good possibility. Especially getting sick often, always fatigued, etc. I'm not sure about the brain fog part though, if that fits in with overtraining.

It might be worthwhile to take a break from the vigorous exercise and see if anything improves.

Oops, just saw that you don't think it's overtraining (we must have been posting at the same time).

I still think it would be worthwhile seeing a naturopath. They have a different approach than regular doctors. A lot of us end up there, because Western medicine has nothing to offer us.

Also check out that Sherry Rogers book. You sound like you may have some liver/detox problems.

 

Or mold illness. You could try reading "Surviving Toxic Black Mold Syndrome" by Dr. Mary Beth Short-Ray to see if that rings any bells.

Mold illness in some people can eventually turn into ME/CFS. So if you are being exposed to mold, it would be best to address it now, before it gets worse. Otherwise, unfortunately, it might be too late.

Best, Lisa

 

Hi there..

I too think its likely that you havent got CFS/ME and would like to label you with that based on those symptoms as in your case it is likely it could be something completely different. With many its easy to tell they do have CFS/ME.

Im basing my thought on the fact you dont have post excertional fatigue and the fact that you are able to do certain things that those with CFS usually cant do at all. Vigorous exercise in CFS/ME dont really happen. (so its not just not having post excertional fatigue im basing my thoughts on). Working and still able to do vigorous exercise most nights of the week.... that isnt CFS. Also those with CFS/ME do get pain... headaches, body aches, stomach cramps or whatever.. pain will feature in it somewhere.

Im not at all saying thou that you arent sick. You sound like something certainly is wrong with your health, its a matter of finding out what.
.........

Does heat affect you and make your condition worst?? How are you if you need to stand quite a while in a queue?? is standing worst for you then walking? Im thinking it could be possible POTS (postural orthostatic tachycardia syndrome) rather then CFS/ME, drug overdose could cause autonomic dysfunction and would give many symptoms including "tiredness" and also give a lot of mental fatigue.

Maybe POTS with also having some kind of sleep issue eg sleep apnea? suspect it esp if you snore.. hence why you feel like you didnt sleep well and want to over sleep.

Get POTS ruled out in your case, POTS causes palpitations http://www.dinet.org/symptoms.htm

Also has your B12 levels been tested??? it could be a vitamin deficiency of some kind making you tired.. brain symptoms, brain fatigue, tiredness.. can be symptoms of B12 issue. Any amount less then 500 thou that is still in range, cause some people symptoms.. (I assume your iron and the normal tests would of been done.. but B12 often is missed)

That just isnt possible with CFS... it truely makes us much worst. Unfortunately most dont realise the depth of this issue unless they have been there themselves.
If you had CFS, you'd probably really know you had CFS esp on finding this site and reading others posts etc. Half of us... maybe more cant even work at all (not even part time) and are on disability, that's the kind of severity with this illness.. those who do work.. manage to do NOTHING else... the rest of their lives are completely on hold.

Its a case of if you work, you then cant have any social life or do anything else at all...most come home from work and will crash... to the point where even cooking dinner may or may not happen due to the degree of tiredness involved.

 

Hi, thatboy.

Another thing you might consider is that the drug killed some of your neurons. You mentioned that your brain checks out O.K. What tests have been run on your brain? EEG? Scans of some type?

Best regards,

Rich

 

MRI & CT. No EEG.

Apnea has been ruled out. B12 is possible but why the onset right after my traumatic event?