Poll: Changes to smell and taste?

[urbantravels]

I'm asking on behalf of an interested scientific observer: Has your sense of smell and taste changed since you became ill with ME/CFS, and if so, how?

 

[ukxmrv]

My sense of smell and taste has always been strong and it didn't change when I got ill

 

[Enid]

It has changed over time - initially over acute stage taste and smell seemed heightened (and reflecting so much as disgusting) in the later and current stages both senses are much less acute than before ME. It's "clobbered" both senses and I have difficulty positioning sounds now.

 

[Boule de feu]

Smell - Pretty strong MCS.

At some point, I lost completely my sense of taste.

 

[August59]

Taste wise it was a lot of things that use to taste good starting tasting bad and vice versa. Smell wise it seemed to more sensitive and I was also smelling things that were not there or was so low that others could not smell it. The phantom odors were usually indoors and would be a musky or mildew type odor which would be very strong to me, but no one else could smell it. When this occured the severity of it almost always coincided with the amount of stress that my body was experiencing.

 

[SilverbladeTE]

Lost most of my sense of smell, in fact, it varies by how bad I am, so when I was at my worst, pre-testosterone injections, I had lost almost all my sense of smell!

 

[SaveMe]

my smell has improved from cfs!! i can pick up scents from a mile away

however ive noticed im more sensitives to smells, to the point of feeling nauseous. weird, eh?

 

[urbantravels]

Hmmm... only a small number of responses, but I'm not seeing much of a trend here in any direction.

I selected "no significant change" because I had a very acute sense of smell before becoming ill, and that doesn't seem to have changed. It can contribute to sensory overload in some situations, but that also isn't completely different from how I was pre-ME/CFS.

 

[urbantravels]

Bumping in the hope of getting a few more answers. Please answer even if it's "no change". Thanks!

 

[caledonia]

My sense of smell and taste became very acute due to MCS. Since my MCS has improved greatly with methylation protocol, they've gone almost back to normal.

 

[urbantravels]

Did the acute taste and smell apply mainly to things you were negatively reactive to, or to everything?

 

[Mya Symons]

It all depends on the day for me. Sometimes I will wake up and on that day I will notice smells more (what my neighbor down the hall and upstairs is cooking, for example). On other days things with preservatives in them will taste horrible (like pop in cans and salad dressing). And then on other days I will be constantly telling my husband to turn down the television because it is too loud or the lights will be bright and I will have to wear sunglasses at night.

This is not a constant thing for me. The heightened senses come and go and it is usually one at a time. The sense of taste might be one that stays for the most part. I can always tell when some food thing has expired, even for just a few days. For example, my husband bought expired peanut butter from the store (by a week). I didn't look, but the minute I tasted it, I knew it was old. I told him and we got into a stupid argument about it until he checked the date.

 

[CBS]

Way back when I first got sick (1994), my sense of smell became highly sensitive for just a few items. I was overwhelmed by the smell of bananas gassing off (to the point of having to avoid the produce section all together or sometimes even being forced to leave the store).

This last about six months. Since then, my sense of smell has been greatly reduced. Put me down as "other."

 

[taniaaust1]

The MCS gives me a super sensitive nose to chemical smells. At one point I could even smell when my neighbour had hung clothes out on her line from inside my own house even thou my windows were shut.

On top of that, the CFS/ME in the past used to mess up my sense of taste and smell at times eg I'd be eatting something and be tasting a completely different kind of food (like my brain taste/smell messages were all mixed up) eg bread may taste like pineapples, I'd also suddenly smell things which werent present (like an epileptic may before a seizure). This happened to me occassionally when the CFS/ME was very bad.

 

[Rufous McKinney]

the CFS/ME in the past used to mess up my sense of taste and smell at times eg I'd be eatting something and be tasting a completely different kind of food (like my brain taste/smell messages were all mixed up) eg bread may taste like pineapples, I'd also suddenly smell things which werent present (like an epileptic may before a seizure). This happened to me occassionally when the CFS/ME was very bad.

here is a VERY old thread. I just voted!

I experience a generally dried out condition (sinuses tongue lungs throat) from yin deficiency, the ME. So I have experienced the entire gamut.

1) smell hallucinations- the downstairs dinner smells like benzene (its not benzene)

2) can't smell things others smell- my daughter is forever pointing this out

3) good smelling things smell horrible

4) smells park in my membranes and sinus, and don't leave. (cumin, neem, BCAAS)

 

[Jadzhia]

Yes, I've noticed quite a noticeable change in both. It started with fish. I've been a big fish eater for years but suddenly a couple of years ago I noticed fish tasting 'off'. I'd mention it to my partner and he'd say it tasted fine. This happened on numerous occasions and in the end I stopped eating the fish that tasted that way. I figured maybe I can taste fish going off before anyone else can? Who knows!

Then later, I noticed some other foods tasting weird. Cucumbers smell and taste weird to me. The only exception was one I grew recently, it tasted OK! Some things just taste or smell cardboardy or musty, yet other foods are fine, e.g. tomatoes.

I've no idea what is causing it, unless it's a result of various deficiencies. It's annoying because it puts me off eating food I know I need to eat. Sometimes I'll just force down my food because I need it, not because it tastes good. Sigh.

 

[Rufous McKinney]

This happened on numerous occasions and in the end I stopped eating the fish that tasted that way. I figured maybe I can taste fish going off before anyone else can? Who knows!

I think this is a combination of issues, mostly neurological- the data is being reported wrong. No my neighbors dinner is not benzene.

My daughter tells me I can't smell things. and this may be true but the opposite is also true- I smell acutely.

So I can smell "peas" in the protein drink, or those lentil chips, using pea powder, and I don' t like that so I don't eat it.

I smell "what that tilapia" was eating, and I don't want any more.

Smells also park, stick around and don't leave. Hence I hate cumin.