FAQ: Is losing your voice a common EDS thing?

I have completely lost my voice for the fourth time is six year, and twice it didn’t come back for three months. Both were pre diagnosis and I think that people thought I was super strange that my cough would not get better. It was so bad that I couldn’t lie down without having a coughing fit which usually landed with me throwing up and on a few occasions I popped a rib.

Now that I know what I have and that I need to take extra good care of myself I have had two coughs and while both resulted in no voice, I knew what I was in for and put myself to bed for a week so that it never got as bad. My voice is now returning after three weeks, but it is still very weak. Anyway, so now that I appear to have had the same thing happen four times, interested people (thank you to them!) have been asking me if it is an EDS thing… So here is the answer:

The short answer is not specifically, however we all have a gazillion things go wrong as collagen tissues make up over 70% of our body, so basically anything can go at any time. What goes “wrong” very much depends mostly on what injuries we get in general in life, plus other harmless “weaknesses” exacerbate things.

Fo example the Epstein Barr Virus (EBV) has nothing to do with EDS, but the EDS is likely why many many years ago I didn’t combat the virus as 95% of the population does. It is such a common a virus, and most people experience it as really bad flu. Some people find it hard to fight and they then get Glandular Fever. We have no idea when I had the virus, but back when I was REALLY sick when we lived in Canada and we had no answers, my doctor tested me for everything and one of the things that they found was that I had the EBV in my system which was still active and I didn’t have enough antibodies to keep it in check. It didn’t cause my cough, that was just something that went around, but my specialists decided that when I get run down (which is all the time), I can’t fight hard enough and so when I got this terrible cough, the EBV attacked my throat hence the lost voice.

There is massive fatigue with EDS due to the amount of work our bodies use to function normally, but throw in a virus especially one like EBV and it’s not a good combo. I didn’t have a diagnosis yet but they knew at least that something was very wrong, and so I was put year of complete rest. It took me the whole year to recover my voice and to regain a level of normalcy and was able to rejoin society. I had given up a year of my life and got my head around the fact that I would only function on about 50% for the rest of my life and what that looks like. But still with new rest measures etc it wasn’t enough and now I’m down to about 30% function which is hard to measure, but yesterday I badly sprained my thumb opening a teabag sachet 😦 …and I either sprain or sublux a joint somewhere in my body at least half a dozen times a week.

So it doesn’t take much to wipe me out and when it comes to catching a cough, the EBV / EDS combo strikes hard. I am frustrated being without a voice again but thrilled that I listened to myself and that I am armed with the knowledge of how to do the best thing for my body. A week of bed rest is hard, but with writing, blogging and the online Spoonie network, it works…


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