Feeling hot and exhausted.

[JuliaMaple]

Hey everyone,
I was wondering if anyone recognizes these symptoms, and if there is some advice or information that might be helpful.

I have other symptoms too but feeling feverishly hot all the time is a big one for me. I constantly feel very very very hot. So hot that I feel really ill.
I have no fever, maybe a slightly raised temperature but no fever.
And its all the time, it does not stop. During the nights its worst, it makes my whole body feel like its radiating heat. I feel so exhausted from it, with blurry vision and a blurry mind.
My back feels most hot, my neck and back. Sometimes I lie down on the floor, because its made of tiles which are cold. It gives some relief sometimes.

What could the reason be? What kind of causes should I consider?
Thank you very much in advance for thoughts and ideas. Its very welcome.

Julia.

(for the ones that do not know me: I take fludrocortisone ,lots of water and extra salt for POTS like troubles. I am 32 years old and take no other medications.)

 

[taniaaust1]

Hi Julie, Im assuming you are in the first years of dealing with this illness? That's a symptom i had a lot more of in my early ME years where I felt like I was constantly hot (sometimes I was running a very high fever with that feeling while other times I wasnt). I used to actually take cold baths, one time I stayed in there till the water actually felt like my body had warmed it up. Its like heating up from within and then warming everything around.

I too at times lay on the floor when Im like this to try to cool down (if I dont have my mat below) though I rarely get that symptom now.

Ive no idea what caused this though I did have it worst at the time I had more viral symptoms.

There are a type of gel pads phase change material (PCM) you can get to put onto bed or pillow ones...cooling mats. (fever mat). They actually absorb the heat out of the body. If that isnt enough one can put them into the fridge for a minute before laying on. I find one of these very helpful

this one is like the one i have https://www.google.com.au/search?q=phase change mat cooling&espv=2&biw=1517&bih=714&tbm=isch&tbo=u&source=univ&sa=X&ved=0ahUKEwiVrOn2m4LPAhVIi5QKHaalCY4Q7AkIPA&dpr=0.9#imgrc=K5IoaY5jak7m1M:

 

[JuliaMaple]

Not the first years of illness
It started when I was about 16, after having the cytomegalovirus. It never left. I am 32 years old now.
The POTS 'sort of' diagnosis is new though, only a couple of months ago. I have no other diagnosis so far.
And the horrible feeling of being too warm/hot all the time is relatively new. This started about a year ago I think. I sort of suspect that it started after taking Ashwagandha for a while, which was something adviced by a homeopath. It worked wonders for me and gave me energy, but after some months I started feeling really warm. I stopped taking it.
I do not know if it is connected or not, it can be a coincidence as well.

Cooling mats sound like heaven I will definitely see if I can find one. It sounds like it could be a 'huge' help. Especially during the night.

Its good that you mention viral symptoms. I have been, and am, very prone to herpes kind of trouble. I have cold sores often, especially inside my nose (sorry for the grossness). I had the cytomegalovirus which is, if I understand it correct, also a herpes family member. I had chicken-pocks several times, again herpes family. And my mother had shingles when she was pregnant of me, which is also herpes family.
Right now, as my symptoms (heat, exhaustion, weakness) have returned, I have a nose that is constantly sore and I suspect herpes to be the reason. (not sure though).
Maybe I should be taking lycine for a while, to see if it does anything. And maybe something that helps my immune system a bit.
I already started with lycine for a bit, but I keep forgetting it. Like I forget absolutely everything during the day.
Thanks for your reply

 

[Hutan]

Hi @JuliaMaple
After getting ME I started getting relentless cold sores - always had one. Valtrex stopped them. I took Valtrex for 18 months. Initially, if I didn't take the Valtrex for a day or two, I would get the tingling prodrome of a cold sore on its way or an actual sore. After 18 months, when I ran out of tablets, nothing happened and I remained free of cold sores for a year. I have just now got another sore at a time when I am sicker than usual with ME and an ear infection.

I did try lycine and it had no noticeable effect.

The latest comments from Davis and Naviaux about anti-virals give me pause for thought. But my feeling is that it is a strain on the body to continually have a cold sore, as well as it's a bit more pain to deal with and it doesn't help morale to have to face the world with a sore on your face.

So, sorry, I have no idea about your continual feeling of fever. (I get feelings of feverishness and feelings of chills, but not all of the time). But my experience is that Valtrex is very effective at getting rid of cold sores.

 

[actup]

@JuliaMaple, I copied my response to another member from this thread: http://forums.phoenixrising.me/inde...mber-anyone-trying-valtrex.46687/#post-761407

CFS hit me in 2001 after a viral infection which I suspect was mono (ebv or HHV4). No testing was done. In addition I'vehad problems with HHV 1 and 2 ( tested ) most of my adult life but symptoms and outbreaks are much more frequent and severe since diagnosis of CFS. Symptoms include urinary tract burning, internal and external nose sores, mouth ulcers and a flu syndrome. As soon as the nose pain begins I start the Valtrex which has become my BFF. I have not been tested for chronic active HHV 4(ebv),5(cmv) which respond to Valtrex or 6( which responds to Valcyte).

My biggest mistake was low dosing. I was on 500mg x2 per day initially( did nothing)and then 1000mg twice per day for six years continuously and now use 1500mg twice per day and at times need 1500mg x3 per day ( Rx is still 1000mg twice per day but with intermittent use it works ). Not unusual for HIV patients to be given 1500mg x3 per day and I've only recently learned that many naturopaths do prescribe this dosage for CFS patients. My point is I wish I'd used the higher dose regimen of 1500mg from the beginning but none of my doctors would or will prescribe it at a higher than 2000 mg per day dosage.

Consider finding a good naturopath or CFS md to prescribe at least 1500 mg twice per day. I have had no problems with this dosage and my liver and kidney function are good. 500mg twice/day is sub therapeutic. See dosing recommendations here:
https://www.drugs.com/pro/valtrex.html


What I love about this forum is I can so often avoid reinventing the wheel. Best of luck and hope you feel better.

@JuliaMarple, your symptoms sound a lot like mine. Awful,awful, awful without adequate dose of Valtrex. Even worse than the crippling fatigue.The above symptoms occurred daily for six years and have decreased to approx 50% of the time now. Without Valtrex I would be in a very bad place. I would love to know what percentage of pwme/cfs suffer with this constant or frequent flu syndrome. This drug has been a savior for me and stops symptoms if caught early within 2-3 hours. Quite dramatic.

 

[kangaSue]

What could the reason be? What kind of causes should I consider?

Do you have a normal sweat response in general? It could be sudomotor dysfunction which can be a common feature of autonomic neuropathy.
QSART and TST are the autonomic function tests done to check for this.

 

[wastwater]

I get the intense heat feeling especially through stomach,thighs and upper body although I don't have a temperature,mine started with lab confirmed EBV,the EBV cleared quickly enough,maybe took 10 days,but it feels like the reaction to it lingers on after 22 years

 

[taniaaust1]

Its good that you mention viral symptoms. I have been, and am, very prone to herpes kind of trouble.

It looks to be the case for me too. I was breaking out with sores on the roof of my mouth, a dr suggested they could be herpes outbreak (either that or it could be something to do with mast cell disorder). Sadly he wouldnt treat me unless its happening more then 6 times a year and I only had 4 outbreaks in a year. I really wanted to be treated for that.

I suspect I have CMV involvement too as I carry it and they never ruled out that if its active or not. I had my eyes all swell shut like bullfrog in the first year of my illness and on thinking about things I could only think about how Ive read that CMV can affect babies eyes

Anyway I seem to have possibly herpes, CMV and EBV involvement.

 

[JuliaMaple]

You guys (@Hutan @taniaaust1 @wastwater @kangaSue @actup ) are awesome, your replies have so much value!
I really consider this to be a possible cause. Now that I read all of this, it seems obvious that it really 'can' be one of the problems that is seriously pestering me.
I once asked my GP to consider the idea that the herpes family could be dragging me downhill all the time and she sent me to an internist. I never met the internist though, I got his student internist and she simply said 'we cannot do anything about herpes and its not likely to be a problem'. She was clueless about herpes being a bigger problem then the tiny sore on your lips occasionally.
She never considered investigating it, so that was the end of the line.

I can again go to my GP and ask her if she wants to prescribe me an anti-viral kind of medication, to test if it has a positive effect or not. Or, if she wants to send me to a specialist that can determine if there is a virus problem. I am actually pretty sure there is, my cold sores, tiredness and all the problems are always connected to each other. It actually started with a virus 16 years ago. If that is not a major clue I do not know what else could be.
I do not know if it causes 'all' my problems, but I suspect that it is very likely that it adds to it at the least.

Did anyone ever have a herpes outbreak on a weird place? I once had sores on my leg, above my ankle. They looked, felt and behaved like cold sores and I had one on my lip too. I was quite ill, had a fever, a sore throat, and extreme exhaustion. I did not go to my GP because I could not imagine that it actually where cold sores, but later in life I have always wondered about it. I still have the scars.

@kangaSue
I do not think I have a normal sweat response at all. I barely sweat.
When I am stressed out though, or stand for a long time, I do sweat a lot suddenly. I think (suspect) that I have the hyperadrenergic POTS type, which causes high stress hormones. In those moments I sweat.
When I was in the hospital for the Tilt table test, I was also put on a device that measures the sweat on the hands and under the feet. I was very sweaty at that time. Stressed from being in the hospital, and the journey to the hospital had already caused a lot of 'upright' time. My body was already wired.
So the result was 'normal'.
And the doctor did not look into it any further.
But at home, when I am feeling so hot, I do not sweat. My skin is just dry everywhere. It does add to the hot feeling. I often spray my skin with water, which helps.

When I see the neurologist again, I could maybe ask him if he wants to prescribe an antiviral, or send me to a doctor that can do that. It would be a really good thread to follow.

 

[actup]

@JuliaMaple, prepare a solid case for your primary. Take a copy of the drugs.com Valtrex dosing guidelines I linked to in prev post to your next visit. If you have enough Valtrex try higher dose on your own before next visit so you can report results. Valtrex is generic but still expensive so usually requires pre-authorization from insurance company for chronic use. You can shorten the ladder insurance cos make you climb for expensive drugs by being able to report that higher doses are much more effective and that your symptoms are frequent enough to be considered a chronic issue.

 

[kangaSue]

I do not think I have a normal sweat response at all. I barely sweat.

You might want to look into Sjogren's Syndrome too. It has a large overlap of symptoms with ME/CFS and sudomotor dysfunction is a prominent symptom with that but it can take ten years for antibodies to turn up in blood tests.

Anyone who has autoimmune disease is at higher risk for infections and the immune system and the autoimmune response are very highly integrated and can have some overlap so Herpes virus or cold sores and many other viruses are more apt to show up in people with autoimmune disease.