migrating pain on scalp as well as in ears, throat, eyes associated with blisters in mouth

[antares4141]

This has been a hallmark symptom over the years for me. It doesn't happen often, maybe 2 or 3 times a year. Different levels of severity, sometimes associated with higher levels of fatigue sometimes not. I haven't been as diligent at keeping notes as I should but pretty sure I can associated it with blisters on the roof of my mouth and on my gums. But had it since the beginning.

Pain would be similar to sciatica, and as mentioned it migrates around my head the same way sciatica might start on your but cheeks but at some point end up in your feet.

I've heard people talk about facial palsy and lyme, but from the reading I have done that is more to do with paralysis. Which I don't think is an issue with me.

I also got to thinking couldn't researchers take a swab of a blister and figure out which virus is driving it. I presume there are a few like hpv and herpes that might be associated with this? Than you have canker sores associated with immune disorders.

I remember reading you can get hpv in your throat and it puts you at a higher risk of throat cancer.
If it could do this is it much of a stretch to assume it might damage a vital nerve in your head somewhere?

Has anyone ever did any serious research to rule this out?

Might there be a way to focus antiviral treatments in this area? Say an injection?

 

[Moof]

I don't know about the pain, but the ulcers sound like aphthous stomatitis? I had it in my teens; I think it appeared a couple of years after I developed ME (I can't remember exactly), and it then disappeared some years later and has never recurred. I remember my dentist saying it was fairly common, and giving me something to put on the ulcers that didn't actually help much!

 

[joanierav]

hi antares. i get the blisters in my mouth, and they were cultured by infectious disease doctor. came back oral herpes simplex. ent can also culture them. the painful sores drove me crazy for years. i finally was put on antivirals for suppressive therapy years ago. and that keeps them at bey.

i have even gotten shingles in my moouth. yes you can get them in your mouth. dentist sent me to an oral surgeon and he lasered them out. then i double up on the antivirals for few wks.

i do not get many outbreaks at all , now that i am on suppressive therapy.

good luck, joanie

 

[antares4141]

hi antares. i get the blisters in my mouth, and they were cultured by infectious disease doctor. came back oral herpes simplex. ent can also culture them. the painful sores drove me crazy for years. i finally was put on antivirals for suppressive therapy years ago. and that keeps them at bey.

i have even gotten shingles in my moouth. yes you can get them in your mouth. dentist sent me to an oral surgeon and he lasered them out. then i double up on the antivirals for few wks.

i do not get many outbreaks at all , now that i am on suppressive therapy.

good luck, joanie

Thanks for the reply Joanie! You don't have any of the neurological symptoms I mentioned? I've heard it hypothesized the outbreaks are so close to vital nerves that this might be a driving force behind the symptoms of cfs.

That's cool they can culture them. I bet something like this isn't cheap. Can any dr do this? Just order the test's?

 

[antares4141]

I've read that people with lyme get facial palsy type symptoms? Anyone here experience this?

 

[Tammy]

Sounds like Shingles virus to me.

 

[antares4141]

People usually only get shingles once, sometimes twice, can be anywhere from what I understand. I've gotten this for the last 20 years. Both the mouth sores and the weird migrating sciatica like pain but in my head as stated above. This last episode knocked me on my ass. It started on the 14th, and this is the first day I've felt my normal or baseline. All my other symptoms escalated, IBS, food sensitivities, fatigue particularly. Although I haven't felt well since I got back into the desert. I think it's the airborne dust. Really bad this time of year. And I have been trying to make it without air condition which doesn't help.

 

[lafarfelue]

Shingles is also known as Herpes Zoster. Herpes stays in the body forever, and it seems many PwME experience ongoing active symptoms of different types of herpes virus. Might be worth searching the forums for examples and see how they test for and deal with it?

Example of a recent publication about herpes Zoster (behind a paywall): https://emedicine.medscape.com/article/1132465-overview

Reactivation of varicella-zoster virus (VZV) that has remained dormant within dorsal root ganglia, often for decades after the patient’s initial exposure to the virus in the form of varicella (chickenpox), results in herpes zoster (shingles). [1] Although it is usually a self-limited dermatomal rash with pain, herpes zoster can be far more serious; in addition, acute cases often lead to postherpetic neuralgia (PHN)​

 

[Judee]

Have you tried something like lysine or red marine algae to see if that alleviates the symptoms at all?

 

[Wolfcub]

I had shingles twice in the year 2000 and 2001. (Had chickenpox as a 3 year old)
It was painful under my ribs. I used a herbal medicine I mixed myself, using Echinacea tincture, Myrrh, Golden Seal and Camomile. I drank this 4 times a day and used it as a lotion also. There was no post-herpetic pain at all, and the rash cleared in half the time it was supposed to.
I wonder if that combination would help you?

If ever I get mouth ulcers (very rare) I use Myrrh tincture directly applied regularly and it clears them quickly. Usually within 4-5 days.
N.B. if you buy Myrrh tincture, apply vaseline around the screw thread. The resin will soon make the cap stick tight, and the vaseline will loosen it and keep it able to open and close.

 

[antares4141]

Have you tried something like lysine or red marine algae to see if that alleviates the symptoms at all?

Nope. Symptoms do resolve over the course of a few days to a week anyways. I was thinking antiviral like valcyte or famvir. I did take the valcyte for a couple of weeks a few years back and it didn't seem to help. That was for general CFS symptoms though.

 

[percyval577]

I've read that people with lyme get facial palsy type symptoms? Anyone here experience this?

I experienced it before my mecfs. But it was "idiopathic" half a year after an antibiotic cure for borrelia. The docotor only said then: "Such palsy happens sometimes." What should he have said otherwise, well a bit later then, starting with EBV, I had this mecfs, it would have been at least interesting ... The palsy lasted for about one month and was a bit funny, not too uncomfortable.

People usually only get shingles once, sometimes twice, can be anywhere from what I understand. I've gotten this for the last 20 years.

I rather play being Kopernikus and think that me/cfs is the reason for the persisiting viruses. Maybe a first, small hint could be:
"Even more intriguing, however, is recent evidence suggesting that pretreatment with Mn increased the susceptibility of mice to a subsequent viral infection (viruses that infect the brain) ... (Seth et al. 2003)" cited after Filipov, Seegal et al. 2004 ("Manganese Potentiates In Vitro Production of Proinflammatory ..."), p 146.

 

[antares4141]

I expe


I rather play being Kopernikus and think that me/cfs is the reason for the persisiting viruses. "), p 146.

I like that hypothesis.

I think there may be multiple paths to me/cfs. Lyme, Chemicals, pesticides, maybe some type of std that has managed to fly under the radar.

But once you have the condition the symptoms are very similar.

 

[antares4141]

I experienced it before my mecfs. But it was "idiopathic" half a year after an antibiotic cure for borrelia.

So was it more like I described "a migrating sciatica like pain"? Or more the traditional facial paralysis?

 

[antares4141]

I had shingles twice in the year 2000 and 2001. (Had chickenpox as a 3 year old)
It was painful under my ribs..

That's another hallmark symptom for me (pain under right rib cadge). Although it's transient and I think mostly disappeared since I went off gluten.

 

[antares4141]

Shingles is also known as Herpes Zoster. Herpes stays in the body forever, and it seems many PwME experience ongoing active symptoms of different types of herpes virus. Might be worth searching the forums for examples and see how they test for and deal with it?

Good point. I really don't care for the scientific papers, too many details I don't need to know and too much jargon. My goto place for information is wiki. And I put it on my bucket list.

 

[percyval577]

So was it more like I described "a migrating sciatica like pain"? Or more the traditional facial paralysis?

No, it was not migrating. It came at once (over night) and stayed pretty the same during the time. It was only halfsided, and therefore it may have been possible to be a bit funny. There was no pain, it was only [kind of] deaf. It vanished then within a few days, and all over the same, without any preference.
So, it was the traditional paralysis.

Pain would be similar to sciatica, and as mentioned it migrates around my head the same way sciatica might start on your but cheeks but at some point end up in your feet.

I find it difficult to describe how my brain feelings feel like (so rather more inside the skull). But for some time when I was better some flickering around my head came up, it could also feel like water. Sometimes a cord could fasten around the low edge of my brain, pretty strong, but leaving the forehead free. (The last one is even a commonly known headache I´ve heard.)
As a nervedamage like a tumour is known I guess to cause pain, also only disproportions on neurotransmitters should do something similar, and should be responsible for all my flickering and cords, short simultanious stiches in the right eye and ear once every day, and so on. But I don´t know if this could be an explanation for your sciatica-like pain.

I also cannot say anything about nervedamage and virus as I don´t know anything. But onions are helping me sometimes, it seems including reactive EBV. If I remember right they work against viruses and even fungi. Maybe it´s a help to find out how strong the disturbance might be. Sausages and a lot of onion(s).

 

[percyval577]

@antares4141, it is probably unimortant, but I corrected "deaf" to "kind of deaf".
It was not as strong as having been by the dentist. Maybe it was only the missing feedback from the ability to move. This deafness sticked not so much out (it´s 19 years ago and then my mecfs brain).