Showers are very bad for me

[xrayspex]

Also Nano, can a mainstream doc order them and be open to those tests?

 

[Seven7]

My shower issues have practically resolved, it was OI, I am on florinef 0.15mg. I am advice to avoid heat, so I just make shower temp a little more than room temperature.

 

[xrayspex]

These symptoms are consistent with some form of mast cell activation disorder. In my opinion, it would be appropriate to have the following tests done:

• 24-hour urinary 5-HIAA (to rule out carcinoid syndrome)
• 24-hour urinary N-methylhistamine (to look for mast cell issues)
• Tryptase (to potentially differentiate between mastocytosis and mast cell activation syndrome)

More info at ME/CFS is a mast cell disorder (hypothesis).


Good luck!

also, if any of those tests are positive what treatment would you recommend ?

 

[Nielk]

Also Nano, can a mainstream doc order them and be open to those tests?

Yes, I would like to know too - what type of Doctor would be willing to test these?

 

[nanonug]

where did you hear about those tests?

Just follow the "more info" link I provided!

 

[nanonug]

also, if any of those tests are positive what treatment would you recommend ?

Treatment usually consists of mast cell stabilizers together with mast cell mediators blockers, such as anti-histamines, for example.

 

[nanonug]

what type of Doctor would be willing to test these?

An allergist/immunologist should be able to order these.

 

[nanonug]

Also Nano, can a mainstream doc order them and be open to those tests?

Yes. In the US, all these tests are available from Quest Diagnostics, for example.

 

[biophile]

biophile: "Showering at night or before bed may also help to make it easier to ride out the effects." Why?. Its weird, i use to fell better when showers are at night, exactly when i feel with less energy.

Although it may have something to do with circadian rhythms, I was thinking more along the lines that if showering wasted us at night, it is easier to ride out the effects because bed time is soon and we will not have to suffer the effects for the rest of the day (which seems to happen to me if I shower properly in the morning).

 

[GhostGum]

Although it may have something to do with circadian rhythms, I was thinking more along the lines that if showering wasted us at night, it is easier to ride out the effects because bed time is soon and we will not have to suffer the effects for the rest of the day (which seems to happen to me if I shower properly in the morning).

I have showed nightly right before bed for years now for pretty much this exact reason, like others have mentioned I also flush badly and have heat pour out of my joints and especially my face which I basically have to lay down for; its almost as if I have to rest to readjust the balance of my biology or something, just so much more convenient before bed.

Crus if your still reading this and have the heat issues where you live have a look at an ice vest, can be a total game changer in dealing with intolerable hot weather, especially when trying to sleep; can even get two of things and tag team them out the freezer when it is really bad.

 

[jeffrez]

I had similar symptoms that were really getting annoying, often pretty bad after a really hot shower (tough getting out of a nice hot shower in the winter ;-)).

So I bought one of those medical shower stools for like $20 on Amazon, I have to say it really is a big help. At first I felt kind of like an old invalid using it (well, often feel that way anyway, lol) but then I wondered why I didn't think of it sooner, even if just to get that little bit of extra rest vs. standing. Sometimes l take it out if I'm just taking a quick shower, but it's actually so relaxing and nice to sit in the water as it rains down on you that I started wondering why showers don't come standard with some kind of flip down seat or portable seating accessory. Seems crazy to stand up now.

You still have to be careful not to have the water too hot or stay in too long, but it's definitely a big improvement over standing. The thing with the stool is that even if you're sitting directly under the shower with scalding hot water pouring down on you (guilty ), you can still keep your legs almost totally out of the water. That acts somewhat as a coolant for the blood as it circulates through your colder legs, and seems to prevent your body from overheating as quickly. I would say the stool has roughly doubled the time I can stay in the shower, or more, if I wanted to stay in that long.

One word of caution: on the stool I got, at least (think it was this one: http://www.amazon.com/Ez2care-Adjustable-Lightweight-Shower-Stool/dp/B007HCCS7C/ref=sr_1_2?ie=UTF8&qid=1348928205&sr=8-2&keywords=shower stool ) the feet are that really noxious mercaptany rubber. I had to leave them outside for a week or two before using them, which got rid of a lot of the fumes, but not all of them. After another couple weeks the majority of smell was gone, so even if you're not especially chemical sensitive, you might want to take that into account if you decide to try one. I think most of them probably have those to prevent slippage.

 

[sickboy]

http://news.bbc.co.uk/1/hi/health/8254206.stm
"Showering may be bad for your health, say US scientists, who have shown that dirty shower heads can deliver a face full of harmful bacteria.
Tests revealed nearly a third of devices harbour significant levels of a bug that causes lung disease.
Levels of Mycobacterium avium were 100 times higher than those found in typical household water supplies.
M. avium forms a biofilm that clings to the inside of the shower head, reports the National Academy of Science."


http://www.newscientist.com/article/dn17786-shower-heads-make-a-perfect-home-for-bugs.html

 

[Nielk]

Hi sickboy,

Welcome to the forum.

Nielk