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Connective Tissue and/or Nerve Pain

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Posted 4/27/2019 12:30 PM (GMT 0)
Hi, folks.

I have been sick with Lyme and co-infections for more than three years, and I thought I had connective tissue and nerve pain before, but the past few months have taught me that I had no idea what that could mean! People have recommended pain meds, but I am hoping for other types of support as well. I want to figure out what is causing the pain - a specific infection, breakdown of collagen that could be dangerous, nerve misfiring, inflammation related t MCAS, or something else...? I'm hoping that someone who has similar symptoms has figured them out.

My main symptoms are pains in the front of my abdomen, in multiple locations between my navel and the underside of my rib cage. Care practitioners have told me this is nerve entrapment, inflamed tendons and ligaments, and muscle cramping. The sensations are burning, buzzing, cramping, stabbing, gnawing, and aching. Digestion does not affect them, nor does time of day. Posture does affect them - they feel better when I am lying down or standing, but they don't go away entirely, and they get worse if I am hunched over at all. I would conclude that I have deconditioning mixed with awful posture, but other areas also are sore - my wrists and ankles (sore deep inside, soft areas tender to the touch), shin splints, and the round and inguinal ligaments in my pelvic area. No swelling that I can discern.

So! Does this sound familiar to anyone? How do you explain it, soothe it, fix it? Should I look into Ehlers-Danlos or some other connective tissue disorder, or do people feel widespread pain like this just from Lyme? (I know it's possible, but want some reassurance.) Does this sound like connective tissue or nerve issues, or both?

It's so unsettling when new and limiting symptoms arise.
Posted 4/27/2019 3:08 PM (GMT 0)
"Does this sound familiar to anyone? I want to figure out what is causing the pain - a specific infection, breakdown of collagen that could be dangerous, nerve misfiring, inflammation related t MCAS, or something else...? I'm hoping that someone who has similar symptoms has figured them out"..................................

"Does this sound familiar to anyone?"

Yes, very familiar. No Dr could figure this out for me. Not even a good LLMD. Since I have a few autoimmune things.....it easy for them to blame that. Or of course just call it "fibromyalgia" LOL. Dont get me wrong, fibro is real, just that they dont bother to figure out everyone's cause, as its prob many.

I even got a hospital grant (very helpful disease/patient advocate/councilor) to cover gene testing many rare (but recognized) muscle disorders. tested negative.

I always dove deep into various form physical muscle and nerve entrapment release,(parts and whole body) which is forced circulation.. I wrote many posts on this, but newer people here would have never seen them.This started to work better after one year of ABX. I still do some of this daily depending what part needs work. Pain from messed up muscle and tendons are one huge time consuming onion to peel away. I have a whole collection of various fitness rollers, sports balls, "thera cane" thingies ect.

If I did not do this in the past, I would have been much worse, almost wheelchair bound. I also learned what not to do from Physical Therapists "failures" tried on me. Unbalanced muscle also gave me slight scoliosis, which I am trying to correct on my own. The PT and Dr "system" fail tremendously here. Zero thinking out of the "box". Zero. I met one PT who had lyme and he just confirmed that what I was doing was great and keep doing it.
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note: a good part of my nerve pain was entrapment from tight muscles- sometimes far away from the pain felt area. Might have been a high adrenal connection / anxiety doing some of that too. Hand tingling was from forearm to shoulder issues.

My tight neck can make my lower back tight, which in turn can bother the leg nerves exiting the pelvis, tightening my foot. Its all chain reaction- connected. My left leg was "on fire" for years when standing. Now just stiff some days- working on that. Neck almost stuck a couple years, then "gravily" five more(better), then post ABX: temporarily tight and crunchy, now just sometimes temporarily tight in the AM which I can fix in 5 min, but cant workout that day.
Posted 4/27/2019 3:24 PM (GMT 0)
saraeli - when you mention "buzzing," is it like in a certain small area that feels like s small, mild electric shock?
Posted 4/27/2019 6:33 PM (GMT 0)
Astroman - yes, it's maddening how dismissive and unhelpful all the specialists I see are. My PCP told me to put some CBD cream on it and "don't do anything." Everyone shrugs and says it must be related to my whole mess of inflammatory conditions, and it's getting tough to function is some ways. I'll look for your posts on nerve entrapment release.

Running Wild - Yes, if pressed it feels like a tiny area of electrified tenderness the size of my fingertip, and it occasionally can feel sort of burn-like at rest. This is the point right on the midline above my navel. I first felt it a few months ago during a snake yoga pose, and then I made it worse by resting a heavy book corner there six weeks ago, and though it does seem like an injury, I cannot figure out how to heal it. And no one I ask will even investigate to see if anything is wrong. My partner half-seriously wants us to buy our own ultrasound machine to save me ER trips!
Posted 4/27/2019 6:49 PM (GMT 0)
Also, Astroman, did you have any testing or imaging done to rule out issues with internal organs? That is one of my biggest worries. The sensations are all on the surface of my abdomen, but because of referred pain, I'd like to know how to rule out issues with organs. I guess because I'm having issues elsewhere (lower abdomen, shins, wrists, etc.) maybe I should assume it's all the same phenomenon.
Posted 4/27/2019 8:48 PM (GMT 0)
i did ever test known to man and bartonella or mycoplasma with borrelia was the cause of all my nerve and connective tissue damage , eds is a syndrome named from the doc who noticed it but the symptoms dont explain the cause . bartonella and borrelia intercellularly does!
after treatment the pk protocol helped my nerves a lot
Posted 4/27/2019 9:24 PM (GMT 0)
Saraeli, I feel your frustration. I don’t have any answers and do wonder some of the same things. Hope you get better answers than I have. We just ran an autoimmune test for dysautonomia through the Mayo Clinic labs. Any dr can order it and send it out. My gut is still to treat the infections hard but when that doesn’t help, what next? Makes sense to look everywhere. Have you done that test? I know you’ve talked a lot about your dysautonomia. Bluelyme, what is the pk protocol?
Posted 4/27/2019 9:50 PM (GMT 0)
Is the PK protocol the Patricia Kane IV phosphytidal choline and...?

Edit - googled it

“The administration of Phosphatidylcholine, Leucovorin/Folinic acid, Glutathione and Phenylbutyrate may offer a new therapeutic strategy for neurological disorders involving neurotoxic exposure.”
Posted 4/27/2019 10:01 PM (GMT 0)
Ok thanks for searching that Girlie. Makes sense.
Posted 4/27/2019 10:49 PM (GMT 0)
saraeli-

Ive had my abdominal cavity x-ray'd and CT'd looking at organs, not MRI'd though. Hips and complete spine got both image types. In my case, a slight "S" curve makes anything possible, none of my vertebra line up perfect.

I think the reason my muscles didnt recover normally on there own is because of the years spent in the "diseased" state and I kept abusing my body in a certain sport, not letting it heal. An old garden hose left coiled for years does not exactly straighten when uncoiled.

A good myofacial release therapist from the John Barnes website can find tight spots in your body that traditional PT's cant find.

Post Edited (astroman) : 4/28/2019 8:40:53 AM (GMT-6)

Posted 4/28/2019 4:49 AM (GMT 0)

Girlie said...
Is the PK protocol the Patricia Kane IV phosphytidal choline and...?

Edit - googled it

“The administration of Phosphatidylcholine, Leucovorin/Folinic acid, Glutathione and Phenylbutyrate may offer a new therapeutic strategy for neurological disorders involving neurotoxic exposure.”

thanks for always getting my back girlie ya it's administered via iv , looks like mountain dew.
Posted 4/28/2019 5:29 AM (GMT 0)
Mmmmm Mountain Dew - I guess it doesn’t taste like it tho. 😬
Posted 4/28/2019 2:40 PM (GMT 0)
Phosphatidylcholine can be purchased in tablets too, which you rarely here about it on this forum.

https://www.webmd.com/vitamins/ai/ingredientmono-501/phosphatidylcholine

"Because the body uses phosphatidylcholine to make a brain chemical called acetylcholine, there is also some interest in using it for treating "brain-centered" conditions such as memory loss, Alzheimer’s disease, anxiety, manic-depressive disorders, and a movement disorder called tardive dyskinesia. But there is limited scientific evidence to support these uses."

The chemicals above are part of and in the Krebs methalation cycle. This seems to get stuck in some people, even if they are not low in choline.

Past Member "decarte" (MIA?) used choline (capsules) and some other stuff gathered from some people on Lyme Net I think it was? Maybe they got the idea from this PK Protocal? Oral pills are easy, not as effective though. Not everyone has Dr who will needle pump you with some protocol found on the net lol.
Posted 4/28/2019 2:43 PM (GMT 0)
PK protocal:

http://www.nourishbalancethrive.com/blog/2014/11/25/pk-protocol-chronic-lyme-disease/
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