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Tongue Symptoms

Messages
9
Just a quick question, if there is such a thing with ME/CFS/FIBRO
Does anyone else suffer with pain and heaviness in their tongue?
I have recently had a virus which wakes every little symptom up but I ve noticed a very painful aching in my tongue and it feels swollen and heavy? I m not slurring words or anything but it just feels so strange.
Thanks in advance friends
 

lauluce

as long as you manage to stay alive, there's hope
Messages
591
Location
argentina
I don't have the symptoms you describe, but my FIRST me/cfs symptom was "pins and needles" in the tongue. Such paresthesias the spread to the rest of my body, specially hands, feet, and the side of my head
 

caledonia

Senior Member
I haven't had that from ME, but I did have a weird tongue thing from antibiotics taken for oral surgery. My tongue felt very large in my mouth. I couldn't tell by looking in the mirror if my tongue was actually bigger or not.

When I discontinued the antibiotics after the 10 days, it went away. I think it might have been amoxicillin, not totally sure.

Have you started any new medications or supplements coinciding with the tongue issues?
 
Messages
89
Location
Ontario, Canada
when my sore throat is the worst, it extends into the tongue, absolutely. it's more a flaming pain than a swelling heaviness but quite nasty. b12 + iron anemia were ruled out so I do the same things for it as for the throat: salt gargle (with spoonfuls of salsa or sorbet, lemon in water to buy a few minutes of somewhat numbed comfort in between gargles...). zinc lozenges a few times a day seemed to reduce the frequency of the soreness extending into the tongue but gastrically, those aren't always tolerable.
 

Patrick*

Formerly PWCalvin
Messages
245
Location
California
Yes, I have had that (worse in the past) and I currently have it right now. I believe that it is a form of peripheral neuropathy for me. When it comes on for me, it often comes with pain in my fingertips and toes, and to a lesser extent, pain in my hands and feet---all signs of PN. It could be due to problems with the vagus nerve too.
 

Dmitri

Senior Member
Messages
219
Location
NYC
I have geographic tongue, which doesn't sound quite the same. Do you have pictures of how your tongue looks during these episodes?

While my tongue always hurts in the "peeled" areas, the degree of pain doesn't perfectly correlate to the visible damage. My tongue can look red and skinned with mild pain, but when I get burning pain in my gut, the red areas begin to sting badly, even when the peeled areas don't look that bad.
 
Messages
69
@Belle72 I get the tongue numbness and stinging. It is related to the neck. When I start poking around on certain parts of the back of my neck it causes it. I back of quickly as I'm afraid to cause damage and have it last.

I also have face numbness and stinging below the eyes that comes and goes. I have face muscle pain as well.

More recently I heard about craniocervical instability relating to ME/CFS. I'm looking into that now.

I know my earliest symptom was neck pain/stiffness and it wasn't later until I got fatigue and many other symptoms and pain other places.
 
Messages
8
@scisolver Can you tell me more about the craniocervical instability? What does it feel like? What symptoms do you deal with as a result of this? I’m wondering if this is what I have with my CFS. Thank you in advance!
 
Messages
69
@Charcey97 I'm not sure I have craniocervical instability. I've been learning about it though. I think there is something going on with the neck. I was going to get a dynamic (flexion, extension, rotation) standing MRI scan, but I'm not sure now.

I think the neck could be part of it. However, I just learned something else now I can share with you.

The craniocervical instability led me to learn about intracranial hypertension, then I came across a post on health rising mentioning this in an article. This: https://www.healthrising.org/blog/2...igh-pressure-brain-intracranial-hypertension/

Then I looked up one of the practitioners mentioned in the article, Perrin. I watched his video and I think he makes a lot of sense. He talks about the lymphatic system.

Once you watch those videos and understand feel around your chest for any lumps. I feel lumps in mine. I thought they were trigger points all this time, but I think they may actually by clogged/varicose etc. lymphatics.

I'm already doing the carnivore diet, which is a diet that is plant, dairy and eggs free. But, if I can somehow get these lymphatics moving again perhaps that may fix things. I'm very surprised that people don't know about this. I spent many hours looking up the names referenced in that first article. There have been some good recent discoveries.

Watch the videos about this you can find on YouTube:
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
My husband says the lumps on my body, especially when I am a lot of pain feel like knots; then spaces right beside them. When he massages those spaces, I have a little less pain. for up to an hour! When I have gotten trigger point massage, I get super sick with everything, especially fatigue, light and sound sensitivity, insomnia.

Really though, I did not have bad posture or have lymph pain before I had Epstein Barr in the first place.
Then why all the fevers and infections?

What came first the chicken or the egg?