Excitment and Sun in CFS. Do you have this symptoms?

[Jeffy14]

Hello everyone,

1) I have had CFS for 2 years now and I'm wondering if some of you have this symptom. It's very strange but whenever I get excitement it's seems my brain wont shut down when it's time to go to bed. I will have lots of troubles falling asleep and sleeping well. I just want to precise that I never ever had all these symptoms before having CFS.
For example, let's say I'm watching a football game in TV with my parents at home. If I get excited over the game, I will have what I described above. It seems my brain is still excited when it used to shut down normally before.
Also, playing video games for 2 hours in the day will do the same effect. I'm not even talking about playing video games before going to bed. Even if I play 2 hours in the morning, it will prevent me to sleep correctly (it's even worse when I play in the evening). Thus, playing video games make me exhausted.
When I go to bed after having played video games in the day (only a few hours) I get sorts of flashes of the game when I close my eyes and try to fall asleep, it's like I'm still in the game.

Another example is when I met with friends that I have not seen in a long time, my body starts shaking a little bit, my hands etc... I tried to control it but it's very hard. The excitement of talking to them etc... makes me unable to sleep correctly afterward. it's like I cant relax and go back to a normal state.
When I try to sleep after this, my brain keeps thinking about the meeting, conversations etc... it's really annoying.

I noticed I can avoid this. If I am with my friends I avoid getting too involved in the conversations.
When I get involved, I feel my brain continues racing even after the event passed. Same thing with video games. I stay nervous and cant calm down.
Have you ever experienced this ? Do you know what is the cause of this?

2) I noticed some other strange thing. Sun makes me sleep like a baby. If I spend 20 min in the sun (during the summer), it's gonna make me super tired and I'll have to sleep within a few hours. But it's not "bad" tired as in CFS. I just feel super sleepy.
Does anyone have this too? I never had this before.

Thank you very much

 

[rlc]

Hi Jeffy14, extreame tiredness after sun exposure plus your other symptoms you have, strongly indicate that you may have lupus, if you have not had all the correct testing done for it, here's what should be done http://www.lupuscanada.org/english/living/1000faces_sle1.html

All the best

 

[leaves]

hi
this excitement at night could be because of the following:
if your neurotransmitters are depleted, you have low dopamine and serotonine
if you have an exciting experience then your dopamine increases
however your serotonine is still low
then you cannot sleep.

one solution would be to take 5 htp before bed.

 

[Jeffy14]

Hi Jeffy14, extreame tiredness after sun exposure plus your other symptoms you have, strongly indicate that you may have lupus, if you have not had all the correct testing done for it, here's what should be done http://www.lupuscanada.org/english/living/1000faces_sle1.html

All the best

Hello,

THank you for your help.
I check the website but I dont think I have lupus. Sun makes me tired but does not provok anyting more as it may be for lupus. Also, I dont have any of the other symptoms described
Thx though!

 

[Jeffy14]

hi
this excitement at night could be because of the following:
if your neurotransmitters are depleted, you have low dopamine and serotonine
if you have an exciting experience then your dopamine increases
however your serotonine is still low
then you cannot sleep.

one solution would be to take 5 htp before bed.

Hello and thx for yor answer.
Ok I did not know about all this.
I'll give it a try with 5htp
Thanks a lot

 

[wciarci]

Hi Jeffy, I can no longer tolerate the sun even for short amounts of time. It exhausts me and makes me ill. I am not sure if it is the sun or the heat it produces. I can't tolerate even moderate temperature changes. I used to love to ski and be outside in the winter but can't do that either. As far as the stimuation, it seems like wired but tired. If over stimulated strange things re-occur over and over. A song, sounds, flashing lights but definitely patterns of some sort. Before going to bed try to turn off all stimuli. Do something repeatedly banal but not stimulating. Knitting or crocheting for me helps me get into sleep mode. No t.v. or music. Others may practice breathing, yoga or meditating. Over stimulation to minor stimuli is a hallmark, especially visual, flashing lights, etc. Hope this helps

Wendy

 

[InChristAlone]

I can't really relate to the thing about the sun but...your first topic, yes I can relate.

Often times, if I get into a conversation and it gets really intense, my brain will end up moving faster than my mouth can form the words. I have no idea why really, but I assumed it was adrenaline pumping through me, though I would still experience the fatigue. It's an odd mixture but, I've found that if you focus on the conversation(s) and try to keep it slow and steady, you won't over work your mind.

As for the shaking, again, I think that's probably adrenaline. I know that when I met up with a long lost friend of mine, I was so excited to be talking with them that I couldn't sit still. My hands were shaking and then it ended up I was shivering like I was cold but wasn't. No matter how I tried to calm myself down, the excitement got the best of me and I just sat their shaking until it finally calmed down. Once my body did calm down though, I was more wiped out than anything else. It was like I had just gone outside and taken a ten mile run, when really I was just sitting in my living room.

You can ask your doctor about these symptoms, which I would recommend anyway because they may have the answer you're looking for. That is, if you're seeing a specialist for your CFS.

 

[justy]

Hi Jeffy, i dont have any advice for you but i have just had one of those "oh its not just me moments". I had no idea other people with cfs got this - i have had this for years. i have always complained that i cannot handle excitement and that my body doesnt seem to know the difference between excitment and fear.
If i am really happy to see someone i get very over animated and then can start shaking and racing mind etc. then i get really cold, shaking and shivering and have to go lie down somwhere very warm and do relaxation. I also start to sweat a lot. After the experience i will feel like i had 10 cups of coffee intravenously for hours unless i do a meditation which always calms it right down.

The more i meet others on here the more amazed i am to discover that i am not alone and not just a freak ( which i have always kind of secretely thought)
Thanks for your post - bit tearful now.
I dont know about the serotonin thing, but i do know that i cannot tolerate SSRI'S as they make me very very ill. The last itme i tried them i ended up severely ill for nearly a year with the reaction.

 

[Jeffy14]

Hello Wciarci, InChristAlone and Justy

Thanks for your answers! you described exactly what I feel too!
I tired to talk to my doctor about it (he specializes in CFS in Paris) but he did not seem to know anything that could help....
wciarci I checked for "tired and wired" and this the term I was looking for.
InChristALone, I noticed too that if I try to keep the conversation slow I can dramatically limit the bad effect that it provokes. I have the same problem with friends I have not seen for a while. It's very strange.
justy, I'm glad to see that you had a "revelation"

I'm gonna try meditation more seriously. I noticed that when I was more ill these effects were more intense. Now that I'm feeling better it diminished but it's still there!
Thanks all for your answers. I'll try 5htp.
I just found this forum where they talk about the "tired but wired" thing. http://forums.aboutmecfs.org/showthread.php?6943-Adrenaline-surges/page2

"Dr. Amy Yasko has suggested a list of supplements that can help to calm excitotoxicity. These include GABA, theanine, magnesium, taurine, grape seed extract, pycnogenol, progesterone, Valerian root, and jujube. She is also coming out with a Glutamate/GABA spray in the future, that will combine some of these supplements."

I'll let you know if I find other things!

 

[leaves]

Hello and thx for yor answer.
Ok I did not know about all this.
I'll give it a try with 5htp
Thanks a lot

ok please report back if it helps you!

 

[urbantravels]

Prescription medications can also help shut down the "wired but tired" feeling.

There is a thread somewhere on these boards about sun exposure where many people reported feeling a flare-up or some other exacerbation of symptoms after being in the sun. I had one of those "it's not just me" moments myself when I found this thread. It took me a while to realize that being out in the sun - even if it wasn't long enough to provoke sunburn - often gave me a PEM-like reaction the next day. (Doesn't help that I am descended from very Pale People and I live in Southern California.)

It's true that a reaction to sun exposure is found in lupus, but it seems some of us with ME/CFS get a reaction to sun as well, via some unknown mechanism. In lupus the reaction comes along with a visible rash, but I haven't ever had a rash like that. (I've been evaluated for lupus and had it ruled out.)

 

[Jeffy14]

Prescription medications can also help shut down the "wired but tired" feeling.

There is a thread somewhere on these boards about sun exposure where many people reported feeling a flare-up or some other exacerbation of symptoms after being in the sun. I had one of those "it's not just me" moments myself when I found this thread. It took me a while to realize that being out in the sun - even if it wasn't long enough to provoke sunburn - often gave me a PEM-like reaction the next day. (Doesn't help that I am descended from very Pale People and I live in Southern California.)

It's true that a reaction to sun exposure is found in lupus, but it seems some of us with ME/CFS get a reaction to sun as well, via some unknown mechanism. In lupus the reaction comes along with a visible rash, but I haven't ever had a rash like that. (I've been evaluated for lupus and had it ruled out.)

Hello and thank you urbantravels,

DO you know what kind of medication helps with "wired but tired"??
The sun does not make me feel anything else than feeling very tired (not bad/CFS tired) a need to sleep. Whats PEM please ?

 

[*GG*]

Hmm, I wonder if the sun is producing Vitamin D, and Vitamin D is supposed to do something to your immune system, therefore it could be the Vitamin D fighting our infections?

GG