Prof Julia Newton talk to medical & health professionals on autonomic dysfunction &fatigue in ME/CFS

[SOC]

All this was years ago and I dropped the florinef and the salt loading once I got too sick to exercise. My BP is much higher now, but I still get the gray-outs and see stars. My biggest autonomic problem is not being able to take a bath or shower because of the intense fatigue and weakness that lasts for hours, and which seems to be connected to tachycardia. I'm just ignoring these problems for now. They are symptoms and not causes.

I relate to the showering thing! For years I couldn't shower without having to go straight to bed afterwards. Florinef and verapamil (for tachycardia) changed that.

Treating symptoms can make a huge difference in quality of life for PWME. I'm afraid we have a very, very long wait before we find a root cause and then (maybe) a treatment for the cause. I probably won't be alive by then. Even then, symptomatic treatments are still likely to be used. We know the cause of AIDS and there is antiretroviral treatment, but patients still take symptomatic treatments for some of the results of the infection.

 

[IreneF]

I relate to the showering thing! For years I couldn't shower without having to go straight to bed afterwards. Florinef and verapamil (for tachycardia) changed that.

Treating symptoms can make a huge difference in quality of life for PWME. I'm afraid we have a very, very long wait before we find a root cause and then (maybe) a treatment for the cause. I probably won't be alive by then. Even then, symptomatic treatments are still likely to be used. We know the cause of AIDS and there is antiretroviral treatment, but patients still take symptomatic treatments for some of the results of the infection.

I'm ok with sponge baths and washing my hair in the kitchen sink for the time being. I'm housebound and I don't have the energy to pursue all avenues. Several years ago I saw a cardiologist at the local Internationally Renowned Academic Medical Center, but he was dismissive, although he acknowledged that "there was something going on". I also don't want to take any more drugs. Currently on five prescriptions and a bunch of OTC meds & supplements.

 

[MeSci]

minirin is another med which can reduce urine output and used in diabetes insipidus.

Minirin is a brand name for desmopressin. It works for polyuria of a central/neurogenic type, in which the urine is usually very dilute. It tends not to work (as well) for solute diuresis, in which the sufferer also loses solutes such as glucose (in diabetes mellitus) or minerals, including sodium/salt. The latter would explain why saline helps so much.

I have done a blogpost on solute diuresis in ME here.

I'm awaiting delivery of a couple of natural anti-inflammatories (resveratrol and curcumin) which I hope will help to combat this, and reduce PEM.