bath/shower=blurry vision couple days, flare up

[xrayspex]

Do any of you get vision problems from bath/shower? I get it right afterwards where vision much blurrier and then the next couple days, can be worse actually the 2nd day after. Usually get fatigue/pain flare as well; so I try to sponge bath most of time and then take the plunge every week or 2. Miss it tho love baths and showers in past....have had cfs/fm for over 20 years and its just the last 10 and most noticeable the last 5 that batheing did this.

I was googling this and there is something called Uthoff's sign in MS and optical neuritis. I know sometimes we overlap with MS symptoms. Would an MRI be valuable and if it was negative then what to do to figure out cause? If it was just my b/p lowering I wouldnt expect it to last a few days, the vision issue, would it? I would think it would just be after/during shower bath.

I am looking at cooling products like MS folks use for summer as am dreading the hot weather, become a/c bound

 

[xrayspex]

http://www.glaciertek.com/RPCM_Cooling_Vest/Therapy.aspx

looking at this site and others, any recommendations on best and affordable products for this?

 

[ukxmrv]

The cool vest thing looks blissful Xrayspex, thank you. I overheat badly and don't sweat so need to keep cool in the summer.

With the showers, I gave these up earlier in the illness as I was fainting even in a tepid shower. I thinks it's a POTs type thing with me. I was also fainting if I got out of bed too quickly in the mornings. This started straight away with the acute viral onset symptoms.

When I take baths it needs to be in cool water only. If the water is hot I get an attack of the "hot wobblies" when I get out of the bath or in the hours after. Then PEM reactions for the next days. After a bath I need to drink quickly as much very cold water as I can comfortably and then lie down in a cool room if possible. Lying down with either air con on or a fan over me helps.

I've not noticed what happens to my vision but blurred vision usually goes with the PEM for me. I'll pay more attention to that now and post again.

 

[HowToEscape?]

I get quite reliably knocked out from a hot shower, often though less severely from a warm shower. Then at times a near body temperature water gives me trouble; just warm enough to rinse off the soap is still too warm.

I hate this disease.

 

[HowToEscape?]

Might be interesting to pop an instant read thermometer in the bath water prior and fiddle until it's about 98F, and determine if a bath in that avoids the subsequent crash.

btw (xrayspecs) who is that in the photo?

 

[xrayspex]

hey thanks you guys, helps to know it could just be part of the m.e. symptoms and not necessarily ms or something else, I do wonder about that uthoff's sign.....

yea I ordered a cooling vest today but from a cheaper website, the vest I ordered (and hat and scarf and wrist things kit) cool down from being put in water, will see how well they work its some chemical reaction, some come with ice packs and some are more elaborate systems....

I know I should take cooler baths or showers but man I so love a warm one now and then, it was cool out last nite and the bath was so delicious.....but not worth it in the long run i guess.....I don't usually give in, but so many pleasures get taken away with this crud!

the photo is Deborah Harry from Blondie, I love doing portraits of myself and others doing that sunglass maneuver.....so risky business 80's-ish

 

[taniaaust1]

If you have MS signs (which most of us do) best to make sure MS is ruled out.

POTS can give blurred vision and showers can set off POTS, but my blurred vision from POTS dont last anywhere as long as that. (my blurred vision from the ME thou can).

 

[xrayspex]

tania
what sets off yr blurry vision? baths/showers do for me and certain meds/supps
do have sjogrens dx

I do have an mri on order I could go take, asked for it earlier this year with bad headaches and vision stuff and doc reluctantly ordered but gave me a stern lecture about futility of it so I have been reluctant to get it but thinkI might just to rule out ms altho I guess its not fer sure way to rule out but I do not want spinal tap

 

[taniaaust1]

tania
what sets off yr blurry vision? baths/showers do for me and certain meds/supps
do have sjogrens dx

For me the more common things which set off my blurred vision are the orthostatic intollerance/POTS (so I guess less blood to the brain at time), a ME crash or (I dont know the whys of the following one) .. waking up and finding my vision is extremely blurred and in this case I can have it before Ive even gone upright. (maybe glucose or something dropped over night? too low BP??)

If its morning blurred vision there on waking.. it has at times taken hours for my vision to come in even if Im feeling fully awake, I wish I understood why it has been be so severely blurred then.