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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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how to convince them it's not all in my head

notmyself

Senior Member
Messages
364
@notmyself, are you certain that your fatigue and other symptoms aren't being made worse by any supplements, herbs, or meds you are taking?

Apologies if you've already been there, done that, it's just I think I saw you say you take ashwagandha on another thread? Sorry if I've mistaken you for someone else (I blame the brain fog) but it's just that ashwagandha made me a whole lot worse.

I already had ME long before I tried it though. It was prescribed as a general tonic, but it definitely didn't agree with me. Once I stopped it, I went back to baseline. Phew. Had the same problem with valerian. I was told it couldn't cause daytime fatigue, so it took me months to realise that it does, in me.

I think the other posters advice to not over do it, is good. :)


You have very good memory it seems !! i did post soemwhere ,yes i take aswhaghanda,it fixed my sleep completelly, the fatigue was before taking it..so i don t think is to blame..I think about supplements i take, and the only one that i can corellate with my health getting bad is Vit D .. Spring and sunny days should come sun so i can stop taking the suplemment to see if i feel better..I have a big Vit D deficiency..
 

notmyself

Senior Member
Messages
364
@notmyself it is good to hear that you will get yourself a break ! I am relieved. It might be that your body has undergone a high level of stress and you simply need to be in tune with yourself more and rest. Be gentle and kind to yourself, you only have one you ! ;-)

I will be thinking of you and hoping it's not ME. Keep us informed and take good care of yourself.

Thanks, I'll keep updating..even if it will all comes out that i don t have ME ,i will still visit this forum..and keep in touch with the reasearch..i hope they will finally bring a solid treatment/cure for all..These disease need to be stopped..take care
 

antherder

Senior Member
Messages
456
@notmyself, Vit D made me worse... I have a severe deficiency too. There are quite a few threads here on vitamin d, and others have had bad reactions to it as well.

Good to know I remembered correctly, for once! I was planning to mention my ashwagandha experience on that thread, but forgot. But now I've remembered again...but probably not for long...
 

antherder

Senior Member
Messages
456
@notmyself, Re the vit d supplement, it might be a good idea to investigate further as it can cause some nasty symptoms/problems. It can cause your calcium levels to go too high, I think.

I don't know enough about it, but someone with more knowledge might be able to help.
 

notmyself

Senior Member
Messages
364
@notmyself, Re the vit d supplement, it might be a good idea to investigate further as it can cause some nasty symptoms/problems. It can cause your calcium levels to go too high, I think.

I don't know enough about it, but someone with more knowledge might be able to help.
YEp...i hope for the sun to come out ..to take it naturally and ditch the supplement..also the lack of vit D can cause many symptoms..for exemple my muscle twitches almost gone since i start taking it..but the other symptoms get worse..
 

caledonia

Senior Member
i made the saliva test,and also scan for my adrenals..both test come back fine..so unfortunatelly is not adrenal fatigue,wich is somehow treateable..I know fixing the anxiety will make my situation more clear..but is trully hard,knowing that there is a very big probability that i have a disease wich will change everything for me..also if you had anxiety you probably know how tricky it can be..I understand that you didin't develop cfs after a viral infection??

I was having issues starting about a year before I became disabled. It started with waking up around 5pm and not being able to get back to sleep. Then increasing feelings of unwellness - stressed, fatigue, etc. I used to work out - I became unable to work out and had to quit. Then I had issues with concentration.

Then about 4 months before I became disabled, I started getting a recurring flu-like illness, and started having to take a lot of time off from work which was very usual. Testing during that time showed and Epstein Barr virus reactivation, which doctors neglected to tell me about. I kept trying to push through, which knowing what I know now, was the worst thing to do.
 

Johnskip

Senior Member
Messages
141
YEp...i hope for the sun to come out ..to take it naturally and ditch the supplement..also the lack of vit D can cause many symptoms..for exemple my muscle twitches almost gone since i start taking it..but the other symptoms get worse..
Magnesium!
 

caledonia

Senior Member
I'm still looking at your case. I've had anxiety prior to ME/CFS. You're not exactly reporting symptoms of anxiety either, although I'm sure you're worried about what is wrong with you.

Anyway, here is what you reported:

fatigue
muscle weakness but still able to do 40 pushups
dizziness
brain fog
unrefreshing sleep helped by ashwaganda
very mild pain
muscle twitches
feel sicker after exercise (but not PEM)
lightheadedness

CFS diagnosis without PEM (you actually don't fit the Fukuda definition either, which is the one where PEM is optional - this is the most commonly used definition worldwide) http://www.cfids-me.org/cdcdefine.html

prior history of anxiety - not the same symptoms this time around (although some fatigue was present) no panic attacks, no palpitations, no hyperventilation

adrenal saliva test normal

vitamin D deficiency, supplementation helps muscle twitches, but you don't tolerate it.

=-=-==-=-

I looked at the symptoms of overtraining. There is some overlap, but that doesn't seem obvious either.

Muscle twitches are a symptom of electrolyte deficiency. Some magnesium may be helpful. You could be having muscle twitches during sleep which could be affecting sleep and causing unrefreshing sleep and fatigue. It could also make you feel not calm (anxious). Muscle weakness is another symptom. The brain fog/lightheadedness/dizziness could also be a symptom.

Ashwaganda helps sleep by lowering stress, increasing GABA, and stopping blood sugar crashes by helping your body burn fat. http://lifespa.com/5-reasons-use-ashwagandha-sleep/#

Low vitamin D can cause magnesium deficiency. Profuse sweating (as in working out a lot) can also cause it. A lot of stress can too.
http://universityhealthnews.com/dai...e-a-clue-to-the-cause-of-your-health-problem/

=-==-=-=-

Bottom line - you have many symptoms of magnesium deficiency, and it's easy enough to try a moderate amount without causing any harm. I suggest doing a trial and see if it helps any. Any form except magnesium oxide (which doesn't absorb well) should be ok. So mag citrate, mag glycinate, Epsom salts baths (mag sulfate), etc. Coconut water may also work.

A regular doctor is probably not going to be able to diagnose a mineral deficiency like this, which is another clue. Testing is tricky as mentioned in the article I linked to.

The best, cheapest thing is to just do a trial and see what happens.

If you decide to try it, let us know what happens.
 

notmyself

Senior Member
Messages
364
I'm still looking at your case. I've had anxiety prior to ME/CFS. You're not exactly reporting symptoms of anxiety either, although I'm sure you're worried about what is wrong with you.

Anyway, here is what you reported:

fatigue
muscle weakness but still able to do 40 pushups
dizziness
brain fog
unrefreshing sleep helped by ashwaganda
very mild pain
muscle twitches
feel sicker after exercise (but not PEM)
lightheadedness

CFS diagnosis without PEM (you actually don't fit the Fukuda definition either, which is the one where PEM is optional - this is the most commonly used definition worldwide) http://www.cfids-me.org/cdcdefine.html

prior history of anxiety - not the same symptoms this time around (although some fatigue was present) no panic attacks, no palpitations, no hyperventilation

adrenal saliva test normal

vitamin D deficiency, supplementation helps muscle twitches, but you don't tolerate it.

=-=-==-=-

I looked at the symptoms of overtraining. There is some overlap, but that doesn't seem obvious either.

Muscle twitches are a symptom of electrolyte deficiency. Some magnesium may be helpful. You could be having muscle twitches during sleep which could be affecting sleep and causing unrefreshing sleep and fatigue. It could also make you feel not calm (anxious). Muscle weakness is another symptom. The brain fog/lightheadedness/dizziness could also be a symptom.

Ashwaganda helps sleep by lowering stress, increasing GABA, and stopping blood sugar crashes by helping your body burn fat. http://lifespa.com/5-reasons-use-ashwagandha-sleep/#

Low vitamin D can cause magnesium deficiency. Profuse sweating (as in working out a lot) can also cause it. A lot of stress can too.
http://universityhealthnews.com/dai...e-a-clue-to-the-cause-of-your-health-problem/

=-==-=-=-

Bottom line - you have many symptoms of magnesium deficiency, and it's easy enough to try a moderate amount without causing any harm. I suggest doing a trial and see if it helps any. Any form except magnesium oxide (which doesn't absorb well) should be ok. So mag citrate, mag glycinate, Epsom salts baths (mag sulfate), etc. Coconut water may also work.

A regular doctor is probably not going to be able to diagnose a mineral deficiency like this, which is another clue. Testing is tricky as mentioned in the article I linked to.

The best, cheapest thing is to just do a trial and see what happens.

If you decide to try it, let us know what happens.


WOW...i've never think to take magnesium,cause my serum levels were normal..i didin't know that doesn't necessarily mean my magnesium is fine..thanks for the info
 
Messages
2
@notmyself, Re the vit d supplement, it might be a good idea to investigate further as it can cause some nasty symptoms/problems. It can cause your calcium levels to go too high, I think.

I don't know enough about it, but someone with more knowledge might be able to help.
Hi Antherder,

I am new here, so I am still discovering this page, but I noticed that you have quite similar symptoms as I do.
It would be great if you could share with me if you found out what is the cause of these problems and if you found any solution.
My main problem is that I can’t dtand almost any supplemet and this is limiting me on every step.
Thank you!
Ayam
 

Davsey27

Senior Member
Messages
514
Hi Antherder,

I am new here, so I am still discovering this page, but I noticed that you have quite similar symptoms as I do.
It would be great if you could share with me if you found out what is the cause of these problems and if you found any solution.
My main problem is that I can’t dtand almost any supplemet and this is limiting me on every step.
Thank you!
Ayam

Welcome

And it seems there are many who have had sensitivity to supplemetns,food,medications,chemicals etc

With supplements starting low and going slow may help