Sudden onset of leg and tooth pain - advice needed

[adamf1985]

Hey Guys and girls Ive had cfs/Me for the past 13 years. It started with EBV and my symptoms have been pretty constant the past decade. Namely lots of fatigue - needing to lay down most the day / finding it hard to sit up for too long, head pressure, POTS, achiness....

6 weeks ago I got sore nerve/gum pain. Immediately went to see my dentist and she said nothing wrong with your teeth and gums. 2 weeks later I got really bad leg pain (which has stayed for the last 4 weeks) Ive gone from doing 3,000 steps a day to 30 steps a day.

Ive taken magnesium, bicarbonate of soda, probiotics, panodol, CBD oil, neurofen, naproxen all to no avail.

Im not used to this really bad constant pain in my legs and also teeth. Does anyone have any ideas?

 

[Wishful]

Do you feel that the leg pain is physical (something wrong with the muscles or tissues), or more likely a perception of pain due to misinterpretation of neural signals? I used to have the latter, focused primarily in my front thigh muscles. It didn't change with exercise or rest, and didn't respond to NSAIDs, so I'm pretty sure that it was my brain perceiving pain that wasn't physically caused.

LDN was very effective at blocking that perception of pain. The day after the first 4.5 mg dose, I went from painfully trudging a few hundred meters, to hiking up a steep hill and continuing for a couple of hours, with no perception of aches (Normal healthy fatigue was a wonderful change!). After some experimentation, I dropped my dosage to 2.25 mg sublingually, taken every 36 hrs. After a year or two, I no longer needed it.

I tried acupuncture once (needles in the foot), and that was also very effective at blocking those perceived aches. I assume it was triggering endorphins in the right cells. I didn't continue with acupuncture, since LDN was cheaper for the same effect, but it could be worth trying if you're truly desperate.

Not sure what to suggest about the tooth pain. Maybe something has increased your sensitivity to ordinarily-ignored signals from sensors. Did you change something in your diet before this occurred? Some other change in your environment?

 

[ljimbo423]

Im not used to this really bad constant pain in my legs and also teeth. Does anyone have any ideas?

I also think it could be a neurological cause. There is a CFS researcher named Jarred Younger that thinks most of the symptoms of CFS are caused by immune activation in the brain causing low grade inflammation.

Which can cause almost any symptom in the body. When I get CFS flares, I often get significant tooth and face pain. Which I think is caused by low grade brain inflammation like Jarred says.

Jarred mentioned herbs that are anti-inflammatory for the brain. Like Resveratrol, curcumin, nettle leaf and boswellia. LDN or accupucture also might be helpful as Wishful mentioned.

 

[percyval577]

I got the leg pain even before the typical throat issues in mono. Very uncomfortable. Later I got the same pain in my arms, it came on day within 1-2 seconds from the fingertips creeping up.
Heavy legs, or squeezed, sometimes somehow cold (not to be mixed up with the measurable cold legs I have). Finally it felt like there was water in my legs when I moved.

I know a first impact 26 years earlier: borrelia.
There is a pathway iNOS in the brain: manganese + arginine + LPS = nitric oxide.
Borrelia contain huge huge manganese (and no iron), Herpes viruses need arginine.
So I am improving slowly by avoiding high manganese foods, downregulating this pathway.

In addition I just figured out to take citrate acid and later or earlier milk chocolate, both together with vitB12.
Citrate acid will chelate metals, chocolate will give certain metals. I think nerve actions take place where these metals are, so I do reconfigurate them, it holds the success since three weeks now.
Citrate acid in lemons (one lemon in say 1l water), not so nice for theeth nevertheless, I bought straw, or even use a syringe.


Recently I got tooth ache, it started when I did the first manganese food mistake since long.
The dentist found a dead tooth and a jaw inflammation.
Maybe it´s a sideeffect from my occasionally very low manganese diet, when I thought to be directly affected by borrelia.
(Hopefully not the whole side is affected! Maybe three teeth.)
Yesterday I made a second mistake since long, toothache came today 24 h later, what does it say? hopefully it´s only the one tooth that now is already dead.

I have linked to literature in the Depression/CFS thread a few messages ago. Also in the before last message.

 

[Rufous McKinney]

6 weeks ago I got sore nerve/gum pain. Immediately went to see my dentist and she said nothing wrong with your teeth and gums.

I experience 24 hour cycles with extreme inflammation of the mouth tissue and sinus (and likely brainstem). It maybe an angiodeama-type reaction. I think histamine related/mast cells. (My current hypothesis from dwelling around here)

So the pulp and palette swell. So does the lips and tongue. The tongue alot, because its also reflecting my internal organ unhappiness (heart, liver spleen qi). When I was in the ER last summer, my tongue could not fit inside my mouth. Oh, maybe I made that up for fun.

My teeth are feeling like they are being squeezed out of my mouth. It can hurt alot, and eating is quite difficult. When this was quite bad, I ceased salads.

So my dentist SAW this. then the dental implant surgeon told me: I'd have to PROVE THAT to him. (so, I never went back to that dentist). Interesting, he "saw" the allergic part of it, suggested it was an allergy. So the immunogist/allergist refuses to make an appointment with me. Nice.

Specific teeth will then ache and hurt badly. And then its some other tooth later, or the next day. Its floating around. And I'd get panic attack, bite down, tooth hurts PANIC. If I had allowed this to win, I likely would have pulled all my teeth out.

So that symptom is improving. Most of my symptoms are on a bit of an improvement upswing for which I am so GRATEFUL. Its from really doing MAJOR consistent work.

The Chinese Traditional herbs I take, for Yin Deficiency, plus the gut fixes, plus MASSIVE resting and MASSIVE not doing: is how I am feeling better. Immense ammounts of not doing required.

 

[adamf1985]

hey guys I had a full set of bloods taken

results that came back was slightly high white blood cells -> 11.8
and raised b12 levels -> 1,580

any ideas what to read from this on why I'm getting bad leg and teeth pain?

any feedback much appreciated
adam

 

[Wishful]

My guess is that you won't find any direct correlation. ME is complex, so those slightly abnormal results might be due to changes many levels down from the changes that actually cause the pain. They might even be totally unrelated to ME.

I think you're more likely to find a link to the symptoms by altering your diet (avoiding foods, trying new foods, supplements and remedies) or your activities (more or less strain or endurance activities, different sleep times) or your environment (sleep in a different bed, spend a day elsewhere). It could be something as simple as a chemical in your laundry detergent. If the symptoms started 5 days after your first use of a new jug of detergent (same jug, new unannounced ingredient), it's really unlikely that you'll be able to make that link via memory.

None of my medical tests were actually useful in dealing with my ME. All my benefits--knowing what to avoid, and what actually helps--were accidental discoveries. I did or tried something new, noticed that it had an effect (positive or negative) on my symptoms, then experimented to identify the active factor.