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Do my symptoms indicate CFS?

Messages
25
Hi,

I'm new to this forum and just wrote an introduction post for those who want to have some more background information (http://forums.phoenixrising.me/index.php?threads/hi-im-casper-and-im-tired.58366/).

I’ve been dealing with fatigue and brain fog since January 2017 and I’m wondering about your opinions on whether it might be CFS or not. These are my symptoms:
- Unrefreshing sleep (I wake up tired), even though I usually get 8 hours of sleep.
- Fatigue.
- Brain fog. My brain still functions well enough for me to recently have started studying parttime again (a few hours a day), but when I have to focus on difficult topics I notice how it’s really difficult for me and how my thinking level is not the same as it was before this started. It’s worse on days that I’m more tired.
- Heavy legs. My legs often feel heavy, even though I don’t do sports anymore since this started.
- Inability to exercise. When I try biking for 15 minutes on a high tempo I just notice how my legs have no power.
- Tired eyes. My eyes often feel so tired. Now I do have to add to this that I do spend a lot of time staring into my laptop or tv.

I’ve read quite a bit on this forum, and I see that a lot of people have a lot more physical symptoms. I don’t, and I’m also not sure whether I have PEM. For me it feels when I exercise (for example walking for 30 mins) that I do feel more tired directly afterwards and that my mental fatigue/brain fog has increased. However, I’ve never experienced crashing in the sense that I felt ill or something after exercise. But to be fair I also haven’t pushed myself to my limits in a long time.

I’m not sure if it’s immediately relevant, but I also have a good tolerance for alcohol. With New Years Eve I decided to once not let the fatigue determine my actions, so I went out with friends and drank a lot. We started drinking at 6 pm, and were in bars from 11pm to 5am in the morning, dancing a lot as well. I drank 2 redbulls over the night and a lot of alcohol and was feeling great during the night. I did get a bit sick 2 days later, but considering the fact that I had drank a lot for the first time in 9 months this wasn’t so surprising and personally I don’t think it really was PEM.

I have been tested on a lot, but to be honest I don’t know what exactly has been tested. But when this started I’ve been to the hospital multiple times, they’ve checked my blood, my urine and my stool for anything related to tiredness and everything came back normal. I’ve also had a sleep study done, also no results. Finally, I went to a centre for chronic fatigue in the Netherlands (https://www.cvsmemc.nl/), where they did some neurological tests and a physical test. On the neurological test I scored around the baseline (so according to that test I was fine neurologically), but I don’t feel fine neurologically, and I clearly notice decreased mental capabilities. The exercise test had me bike on a hometrainer with increasing resistance until I couldn’t do it anymore. I performed at 80% of what an average person of my weight, height, age and sex should do, so that showed that something was not right. It also showed that my VO2-max was significantly lower than it should be and that I had high lactate values after the exercise.

I also did the Visual Sensitivy Contrast test (vcstest.com) which was positive, indicating that I have a condition which might affect my eyes. One example of that (which is how I got to it) is mold, which to me seems unlikely but it is something I’m considering. What is also important to note is that the flu that started this and the resulting fatigue started the day after I moved places, and since then I haven’t been away from my new place for more than 10 days.

Now I’m basically wondering what people here think about my situation:
- Do I have CFS?

And does anybody have, keeping in mind my symptoms, suggestions for treatments? Some ideas I have:
- Resting more than I need (say rest 15 minutes every hour).
- Isosorbide dinitrate. I read it helped somebody who was also tolerant to alcohol, which is basically my line of reasoning why it could help for me.
- Other supplements like l-carnitine (already taking this for 3 weeks with no effect so far), D-Ribose, CoQ10, Melatonin.

This post became longer than I intended, thanks for those of you that took the time to read it :)
 

pattismith

Senior Member
Messages
3,926
@casino_4 ,

so sory you are suffering with such bad fatigue.

Do you think mold could come from this new place you are in?

Is it a place that may have been cleaned with some chimical solvents before you came into?

Was it an unused place?
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I’m also not sure whether I have PEM. For me it feels when I exercise (for example walking for 30 mins) that I do feel more tired directly afterwards and that my mental fatigue/brain fog has increased.

That does sound like PEM. Many people with CFS experience their worst PEM 2 days after they exercise. So you might want to keep that in mind the next time you exercise and look for PEM.

The exercise test had me bike on a hometrainer with increasing resistance until I couldn’t do it anymore. I performed at 80% of what an average person of my weight, height, age and sex should do, so that showed that something was not right. It also showed that my VO2-max was significantly lower than it should be and that I had high lactate values after the exercise.

This sounds like you might have mitochondrial dysfunction, which is a big area of interest in CFS research rate now. There have been a few studies that have come out in the last 3-4 years, that have found dysfunction in the mitochondria of people with CFS.
https://www.google.com/search?ei=S4uxWpOJMc2zggeZl4K4Bw&q=mitochondrial dysfunction and high lactate in cfs&oq=mitochondrial dysfunction and high lactate in cfs&gs_l=psy-ab.3...12122.17556.0.18246.17.17.0.0.0.0.110.1662.10j7.17.0....0...1.1.64.psy-ab..0.3.296...0i13i30k1.0.MRsmB3RbQp4

Jim
 

Runner5

Senior Member
Messages
323
Location
PNW
You said you had medical tests, you probably will want to get copies and see what was tested. Thyroid malfunction being a common culprit as well as blood sugar issues.

Your age and hormones will have a baring, any hidden infections or auto-immune issues.

Fatigue is a super common symptom of many illnesses from simple to serious and it can be more than one thing at a time.

Try to find underlying causes and try to find simple answers first I guess would be my advice. I think my issue is either my kidneys or my IBD for example, so maybe not true CFS but I sure am tired. :)
 

Murph

:)
Messages
1,792
cant rule it out from what you've posted. because it can be delayed, pem is not always glaringly obvious. takes time to learn the patterns.

of the strategies you've listed, resting more than you need is a good one.
 

Dechi

Senior Member
Messages
1,454
It does sound like ME/CFS to me. Your story is similar to mine. It started after a viral infection (I had 2 different ones and one of my first symptoms was weak legs).

Continue testing and make sure you rule out everything else, including MG, cardiac and thyroid problems and so forth.
 

HowToEscape?

Senior Member
Messages
626
Keep trying to find something else. If you have something else, there is probably a treatment. If you have MECFS, sorry you’re out of luck.

Fatigue is a symptom of almost any severe illness, and should not be part of the name of our condition. Yes we’re tired, but that is not even close to enough to define it.
 
Messages
25
First of all, I want to thank everybody for the replies. It's amazing how many of you take the time to reply, even in such a short timeframe. It means a lot to me :)

Do you think mold could come from this new place you are in?

Is it a place that may have been cleaned with some chimical solvents before you came into?

Was it an unused place?

There is a little bit of mold in my bathroom, but it's not a lot and I'm not even sure whether it was there when I moved in. The flu and resulting fatigue also started immediately after moving, and I wonder if mold could even have an effect that quick. But still.. There was somebody living in the place before me as well who was fine. I don't know about the cleaning, but I don't think so.

I don't have an answer to your question but I do have a thread in which I deal with the issue of brain fog: From brain fog to clarity in 30 minutes.

Thanks, I will check that out and might give it a try.

@ljimbo423 Hmm I was kind of hoping it wouldn't sound like PEM :p
Thanks for the links. From this I also saw the website of Dr Myhill (this page: http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure) who also wrote a paper about mitochondrial dysfunction. Is she a respected and well known doctor in the field of CFS? I'm asking because she gives some advice to restore the mitochondria (including supplements) and I'm wondering whether I should follow this advice.

You said you had medical tests, you probably will want to get copies and see what was tested. Thyroid malfunction being a common culprit as well as blood sugar issues.

I think (and hope) that thyroid malfunction and blood sugar has been tested already because I went to the GP last year with these complaints and I assume they would at least test this. Unfortunately I don't have the results anymore, but I have an appointment with my GP next week and I will then ask for a copy of all my results, so I can double check. But I kind of just assumed that doctors know what they're doing, so that when I say I'm tired they will check everything they can which might cause it.. But maybe I'm naive, I don't know..

of the strategies you've listed, resting more than you need is a good one.

One problem with this is that it affects my sleep. If I lie down on the couch (I purposely don't lie down on the bed so that I try to associate the bed with sleeping) during the day, it's harder for me to fall asleep at night and it then seems counterproductive. Any tips/ideas about this?

It does sound like ME/CFS to me. Your story is similar to mine. It started after a viral infection (I had 2 different ones and one of my first symptoms was weak legs).

How are you now? And have you found any succesful strategies/treatments that improved your condition?

@IThinkImTurningJapanese Thanks for that video. It's a really moving video.


I have another question regarding vasolidation. I have the results from the cvs/me centre in Amsterdam here, and it says that my blood pressure was within normal boundaries, which means that I most probably don't have a vascular problem. Does that mean that taking for example Isosorbide dinitrate is not very useful since, if I understand correctly, it opens blood vessels and allows for more blood to flow to the brain?
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
@ljimbo423 Hmm I was kind of hoping it wouldn't sound like PEM :p

I don't blame you.:D

From this I also saw the website of Dr Myhill (this page: http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure) who also wrote a paper about mitochondrial dysfunction. Is she a respected and well known doctor in the field of CFS? I'm asking because she gives some advice to restore the mitochondria (including supplements) and I'm wondering whether I should follow this advice.

I have read her info on mitochondrial dysfunction treatment and think she is very knowledgeable on the subject of CFS and mitochondrial treatment. She also has a youtube video out where she talks about treating the "upper fermenting gut".

Which is another term for SIBO. She also says that she spends 50-60% of her time with patients treating the "upper fermenting gut", that's how important she believes it is. Here is a video where Dr. Myhill talks about the importance of treating the gut at 31 minutes in-


Jim
 
Messages
25
Some other thoughts I've been having:
  • Usually when I take a warm shower I feel better and more energetic while I'm in the shower. Does this have any implications/meaning?
  • In January I had my wisdom teeth removed and I got Ibuprofen as painkiller. In the couple of days of taking that I felt a bit better, any ideas about this?
Something else I've been thinking about is resting or not every hour. I tried resting 15 minutes every hour for the past two days, but aside from affecting my sleep negatively I didn't feel much effect. And what I was wondering is the following: say I'm behind my laptop for 45 minutes, only being mentally active, and then lying down for 15 minutes it seems that when lying down I'm still using my brain somewhat (unless I would sleep but that doesn't happen). So wouldn't it then be better to do some light physical activity which basically downregulates the activity of the brain so that the brain can rest while my body does some work? Wondering if anybody has any theories about this..
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Usually when I take a warm shower I feel better and more energetic while I'm in the shower. Does this have any implications/meaning?

I don't know why but I also feel better taking a shower. Often I feel better when I am up and moving around. Of course I try not do to too much or PEM starts to creep in and I feel worse.

In January I had my wisdom teeth removed and I got Ibuprofen as painkiller. In the couple of days of taking that I felt a bit better, any ideas about this?

My guess would be it's pain killing or it's anti-inflammatory effects or both. Pain and inflammation are often a big part of CFS.

And what I was wondering is the following: say I'm behind my laptop for 45 minutes, only being mentally active, and then lying down for 15 minutes it seems that when lying down I'm still using my brain somewhat (unless I would sleep but that doesn't happen). So wouldn't it then be better to do some light physical activity which basically downregulates the activity of the brain so that the brain can rest while my body does some work? Wondering if anybody has any theories about this..

I just listen to my body and if I feel like a need a nap I take one but usually not more that about 20 minutes or I have trouble getting to sleep at night.

So that would be my suggestion- if you feel tired either lay down for a short while or take a short nap. It will take some trial and error to find what works best for you.

Jim
 
Messages
25
So that would be my suggestion- if you feel tired either lay down for a short while or take a short nap. It will take some trial and error to find what works best for you.

Taking naps during the day is just impossible for me, I've never in my life been able to sleep during the day. But lying down does help sometimes, but I do think that doing it often during the day impairs my sleep at night, so I will experiment a bit with that.

Something else just popped into my head, and that is that I tend to eat more since this started. I didn't gain any weight though (it remained pretty stable, I weigh around 78 kg and am 1.87m). It seems odd to me because obviously I move less so I also use less calories.
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Something else just popped into my head, and that is that I tend to eat more since this started. I didn't gain any weight though (it remained pretty stable, I weigh around 78 kg and am 1.87m). It seems odd to me because obviously I move less so I also use less calories.

I'm not sure what would be causing this but immune system up-regulation could be part of what's causing it. I can eat A LOT- 2,500 calories or more, every day and never go over 75 kg.

If the immune system is consistently being activated, like I think it is, it would burn a lot of calories I think.

Jim
 

Dechi

Senior Member
Messages
1,454
@casino_4

I wish I could say I was better but I am not. My health has been slowly but steadily deteriorating over the last few years, even though I am not working and fully resting.

I take Nimotop and I had great hopes with it but it’s merely helping a little wth cognitive problems.

Which doesn’t mean that you will follow the same course. Everyone is different. For all I know, you could even make a full recovery within a few years. It happens.
 

Wishful

Senior Member
Messages
5,655
Location
Alberta
There doesn't seem to be a clear way of determining if one has PEM. For me, it's a fairly consistent 24-hr delay after physical exertion. I might be sitting and reading, and all of a sudden my attention wanders (increased brainfog) and I realize that I'm feeling lousier (lethargy, malaise, aches) than normal. Those elevated symptoms will remain for many hours, and possibly for days in extreme cases. It's the consistency of the delay and the symptoms that makes it recognizable. It just takes a while to be able to recognize it.

I get a similar increase in symptoms following mental stimulation, such as driving of socializing. However, that increase has a shorter and less consistent delay. Those symptoms generally last most of the way through the next day.

One thing that is useful is keeping a food/activity/symptoms journal with times noted. Then if you suddenly feel worse, you can look back and see that you washed windows, rode your bike, or whatever x hrs before that. If that happens several times consistently, you have PEM!
 
Messages
25
I wish I could say I was better but I am not. My health has been slowly but steadily deteriorating over the last few years, even though I am not working and fully resting.

I take Nimotop and I had great hopes with it but it’s merely helping a little wth cognitive problems.

Which doesn’t mean that you will follow the same course. Everyone is different. For all I know, you could even make a full recovery within a few years. It happens.

I'm really sorry to hear that :( Hopefully one day they'll find a cure which can help everybody suffering from this..

I haven't tried much in terms of supplements/medicines yet, so I am still hopeful that either this will still go away on its own (because I've only had it for a little over a year and I read a few times that chances of recovery are highest in the beginning) or that there is some medicine/supplement that helps me a lot. On my list to try right now are:
  • Ubiquinol taken with grapefruit juice
  • LDN (possibly, not sure about this one yet)
  • Melatonin
  • Vitamin B12
  • Selenium
  • D-Ribose
  • Thiamin (Vitamin B1)
  • Nitroglycerin
  • NO2 Black
Any thoughts by anyone on these?

One thing that is useful is keeping a food/activity/symptoms journal with times noted. Then if you suddenly feel worse, you can look back and see that you washed windows, rode your bike, or whatever x hrs before that. If that happens several times consistently, you have PEM!

That's a good tip, I've considered doing that before. The only thing with this is that it puts a really big emphasis on my health situation, which is something I'm trying to actually not do (because focusing on other things does make me feel better mentally).. But then on the other hand if I want to recover it might be good to have as much info as possible..
 

Wishful

Senior Member
Messages
5,655
Location
Alberta
Sadly, ME/CFS and PEM don't go away if you pretend they're not there. I can reasonably claim that keeping my health journal saved my life. I kept having strong suicidal moods, and it was the journal that allowed me to see that those moods followed niacin tablets, multivitamins (with niacin), and niacin-rich foods. Without a record to look back at, I wouldn't have remembered whether I'd had that response other times. Our memories are terrible for that sort of data. Once I had verified the link to niacin, I could accept that the moods were caused by that and a few other supplements (tryptophan and B12) and avoid them. Otherwise, I might have taken some vitamins (They're good for you!!!!) and decided to end my life.

My journal has also allowed me to avoid foods and activities that consistently make me feel worse, even if there's a day or more delay between trigger and symptoms. It's provided far more benefits for my well-being than negative feelings by accepting that I have a health problem.