Wondering if I have CFS?

[LittlePhoenix]

Hey! So I wanted to make a post here since I'm really unsure about what I'm doing right now and I think I might have CFS, and I wanted to get an opinion on whether I should see a doctor or not.

I'm 16 years old, male, and I've been having troubles with sleeping for a few years now, its gotten to the point where I'm almost completely housebound unless I drink a large amount of energy drink and only go out for a few hours. I have this problem where no matter how much I sleep, whether its a normal or abnormal amount I always end up fainting and falling asleep all day every day, it gets to the point where I've been investigated for anaemia and a bunch of other issues, but not this one. I also have hypermobility, and a lot of joint pain, as well as digestive issues and an irregular heartbeat that skips beats every once in a while, which leaves me gasping for air and unable to get oxygen into my blood for a few seconds.

Its gotten to the point where I get ridiculed constantly for something that I can't help, and something I have no idea the origin of, so I get told that I'm lazy and just sleep all the time, when if I don't I only have an hour or two of being semi awake until I go back to fainting and having awful brainfog. I wanted to see whether this is something I should get looked at, thank you for reading.

 

[vision blue]

Hi. I do think you would benefit From medical attention and am wondering what the best way is to approach it so that you dont end up having to see a dozen doctors and be told all sorts of crap that will just waste time, make a person cynical, and worst lead one down wrong path.
So if one were to emphasize objective symptoms, lets see (im thinking out loud)

16 year old male with
joint hypermobility
Joint pain
Syncope
Unrefreshing sleep
Heart arrythmia (maybe just PAC and PVC but with the syncope who knows)
GiI disturbances
Inset approx age 13

Note
how you dont even have To mention fatigue. This sounds like a list that should be able to get you streamlined help

since care these days is fractionated, one possibility is to go directky to both a rheumatologist and a cardiologidt. The rheum will eval mostly thru blood work for various AI things and approach from rhematic angle. Blood tests, antinuclear antibodies, Sed rate etc. Do you have EDS? Is that the forte of rheums? Gut stuff too joints and gut often go together

The cardio will give you a 24-48 hour portable heart moniter to see what those arrtyhmias are- see if theyre causing you to faint (and have unrefreshing sleep)

A better approach is to go straight to the nayo clinic in US. They will do it all quickly. Plus has the advantage of access to folks who deal with genetic Disorders. Its not that mayo olis perfect but for a 16year old doing it this way gas advantages snd you will be taken seriously from outset (If you can test your exome id be happy to anslyze it for you)

any chance of sleep apnea? (Unlikely- just covering assorted bases of unrefreshing sleep

do you remember what lead up to this? Were younin retrospect 100 percent healthy and normal from birth to age 13? Anone in family have anything similar? Or did start with an infection? Any different when eating different foods?? (To ruke out inherited netabolic deficits)

although im a fan of DIY medicine, im not for a 16 year old who has the chance to nip this in the bud.

 

[Pyrrhus]

I always end up fainting and falling asleep all day every day

One possibility to examine might be narcolepsy?

 

[Rebeccare]

I think I might have CFS, and I wanted to get an opinion on whether I should see a doctor or not.

Whether or not you have CFS, if your symptoms are having such a big impact on your life, then I think it would be a good idea to see a doctor. I think that symptoms that impact your quality of life are worth investigating, whether or not they're ME/CFS, because it's possible the doctor may be able to suggest treatments.

This is a very good article about ME/CFS in children and adolescents, which it might be helpful to read and/or share with your doctor if you're trying to figure out whether or not you have ME/CFS.

Sometimes it's helpful to ask a general practitioner whether it would make sense for you to see a specialist, such as a cardiologist or a neurologist, who might be more familiar with some of the issues you're having.Hearing about your symptoms, especially fainting, makes me wonder about the possibility of POTS (postural orthostatic tachycardia syndrome), which is why I mentioned a cardiologist. Or it is possible there could be a sleep disorder such as narcolepsy or Kleine-Levin Syndrome at play, which is why I mentioned a neurologist.

No matter what, it's worthwhile to try to figure out what the problem is because then you'll be able to do something about it, whether it's a medication or lifestyle changes. More knowledge is always better than less!

 

[Martial]

I would investigate Chiari/CCI, EDS syndrome, and lyme disease and co infections with a Lyme disease specialist doctor. Someone mentioned narcolepsy but what you're describing sounds more like hypersomnia which can be idiopathic or from an underlying cause like CCI, Lyme disease, chronic stealth infections, etc. You mentioning joint pain and other symptoms besides the fatigue and excessive sleeping makes it more likely that you could be going through those above conditions rather than an idiopathic problem with wakefulness chemicals in your brain. You could have other things causing your symptoms too so I would just make sure to keep following up with docs and try and get a proper diagnosis and treatment. Cut out the energy drinks by the way because that stuff is going to only excebrarate your problems in the long run. Not good for you. sublingual b12 can give energy without crashes

 

[gbells]

Its gotten to the point where I get ridiculed constantly for something that I can't help, and something I have no idea the origin of, so I get told that I'm lazy and just sleep all the time, when if I don't I only have an hour or two of being semi awake until I go back to fainting and having awful brainfog. I wanted to see whether this is something I should get looked at, thank you for reading.

I'm sorry for your illness and the bullying.

Review the criteria for ME and see if your symptom profile and history match the diagnostic requirements. ME is common after a viral infection (i.e Epstein Bar Virus), gives unrefreshing sleep, inability to recover from exercise normally, reduced exercise capacity, sensitivity to light and sound and often also has mood changes (depression, irritability). If the problems last longer than 6 months and everything else has been ruled out then it's ME.

 

[vision blue]

@Pyrrhus Nice idea on the narcolepsy. Not sure why that didnt occur to me- i thinkni was thinking of the reported “fsinting” as true syncope rather than Realizing it could just be falling asleep!

theres even discussion of association between EDS (which he coukd have given the hypermobility) and sleep disorders tho dont know if narcolepsy is one
https://www.researchgate.net/public...ome_and_Narcolepsy_An_Incidental_Relationship

So maybe go right to an expert on EDS and ask to be evaluated for ir?

 

[Judee]

http://www.dysautonomiainternational.org/page.php?ID=34

https://www.dysautonomiasupport.org/dysautonomia

 

[livinglighter]

Also look into autonomic dysfunction/dysautonomia illnesses like @Judee is suggesting.

POTS is a common one people with ME/CFS can have, but unfortunately it tends to go largely unrecognised. Many people with POTS say they were misdiagnosed with ME/CFS before being diagnosed with POTS. The main thing to recognise here is that there is treatment for POTS and several other neurological diseases but none for CFS.

Extreme tiredness is a common symptom of nervous system disorders, so unless you have the hallmark symptoms of ME/CFS you could be suffering from something else more easier to treat.

As you are young accessing treatment is the main focus. So I would focus on conditions that are treatable if you fit the category. There is nothing to say you can’t have more then one either.

I am sure you are aware that CFS is still viewed as a controversial diagnosis in neurology and most doctors who would want to help you will look into what illnesses you could have that they can treat you for.

 

[Hip]

Its gotten to the point where I get ridiculed constantly for something that I can't help, and something I have no idea the origin of, so I get told that I'm lazy and just sleep all the time,

Sadly even adults who are hit with chronic fatigue syndrome get told that they are lazy, or are blamed for their condition. Parents or other family members may think you are being lazy or don't have the right attitude. But if you are ill, it's not your fault.

Hopefully you can find a doctor who is more understanding and helpful. Some doctors are also a little skeptical about ME/CFS, so do try to find a doctor who is sympathetic and tries to help.

There are lots of conditions which can cause fatigue and brain fog, and so you can ask your doctor to test you for these. Anemia is one of them, but you have already been tested for that.

Another one is celiac disease, which is where the intestines react badly to the gluten in your diet (gluten is found in wheat, and any foods made from wheat). Celiac rapidly improves as soon as you remove all gluten from you diet.

Hypothyroidism (too little thyroid hormone) can also cause similar symptoms to ME/CFS. A doctor can give you a blood test for this, if you have not had one already.


One good way to help diagnose ME/CFS is to check if your symptoms match the Canadian consensus criteria. The CCC are a standard way of diagnosing ME/CFS by looking at the symptoms you have. If the symptoms match, then you may have ME/CFS.

I go back to fainting and having awful brainfog

When you faint, does this happen just after you stand up from a sitting down or lying down position? Or does it just occur a random times?

If the fainting typically occurs when you stand up, it could be caused by POTS (postural orthostatic tachycardia syndrome), which is actually an illness in its own right, but is also common in ME/CFS patients.

Experiencing symptoms soon after you stand up is called orthostatic intolerance, and POTS is one type of orthostatic intolerance.

The symptoms of POTS are listed here.