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Kidney issues, anyone?

SDSue

Southeast
Messages
1,066
Yesterday I got blood work results and was hit with bad news about my kidneys. I am being scheduled at a nephrologist. I know that kidneys are not normally affected in ME/CFS, so it looks as if I might have won the health lottery twice.

If this turns out to be more than a scare, It will seriously limit my antiviral treatment options, not to mention what it could do to my already desperate health situation. Needless to say, I'm not happy.

Did anyone develop kidney issues while on antivirals or other meds? Does anyone else have co-existent kidney issues?

Thanks.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Sue.. my kidneys have been affected by ME/CFS. One of the times Ive ended up in hospital this year due to this dreaded disease and its complications...on my tests they found out my kidneys werent working right. The hospital doctor was so concerned he told me to put my Florinef up from 1 tablet to 4 to help protect my kidneys from getting damaged.

How my kidneys have been affected by ME/CFS is I have POTS due to it ..and with the POTS I can dehydrate easily as fluid just seems to go right throu me (hence why I was told to increase the florinef to help keep me out of a dehydrated state). I didnt even have any idea at all till they found that in my tests that I was getting so dehydrated to be able to cause my kidneys to be not working right.

So you may want to consider if you could have POTS too with this illness or just dehydrated with it (easy to maybe do if you are so fatigued or sick so not drinking enough).. which could be causing your kidney issues. Note- Some of us need to drink much more then normal people do due to how our ME bodies maintain a state of low blood volume etc You may need 3L per day (I got dehydrated and I'd drank over 4L that day but it was hot).

ME/CFS can and does damage different organs in some of us due to the various affects of it (its also damaged my bowel which ended up prolapsed due to coexisting IBS-C and a 2 week drug trial of a commonly used in ME/CFS drug for sleep). This illness can be quite nasty.

Your kidney issues may be directly related to the ME/CFS and not the drugs you are currently on.
 
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SDSue

Southeast
Messages
1,066
@taniaaust1 Thanks so much for your reply. I'm sorry to hear of your hospital "adventures".

I, too, have POTS. I have been drinking about 2 L per day, but it sounds like that's not enough. And yes, fluids seem to just run right thru me, too. Silly question, but how on earth do you manage 4 L every day? That's hard work.

My mother died in her early 60's from complications of kidney disease (started on dialysis at age 55 after suffering all her life with a CFS-like illness) Because of this, I've always been very conscious of my water consumption and kidney numbers. I was put on Florinef earlier this year for my POTS, but it gave me such horrid flank pain that I stopped it because I was worried that it was affecting my kidneys. Turns out to be just the opposite - who knew.

My GFR has always hovered around 55-60, but just dipped to 32 and my creatinine is elevated. Needless to say, I am eager to see the nephrologist.

Are you having any side effects from so much Florinef, or is it helping your POTS?

I, too, have bowel issues. My steep decline with ME/CFS began after emergency surgery for a volvulus (twisted colon). "They" say that a volvulus is often due to anxiety - sigh. I believe it's due to inflammation and/or connective tissue disorder. It will be a good day when medicine admits that anxiety is a symptom and not a cause.