Knee Woes

Hello, good folks of the forum!

I'm still trying to figure out some knee pain that has inhibited my mobility for six months now. Thanks in advance to anyone who reads through this and engages with me!

Knee pain onset: Feeling overall well, generally, July 2023. Normal hiking, swimming, gardening, yoga, and walking the dog activities. No injuries, illnesses, particular stressors, or known tick bites. One day both knees start to hurt in the same medial spot when I walk, during the "screw home" mechanism action. Three days later, I can hardly walk from the pain, and when I do, one knee seems to dislocate about every 20th step I take. Going down stairs is no longer safe for this reason. Zero swelling. Physical therapist says nothing feels swollen, tight, lax, or structurally unsound in any way. Pain always in the same very localized spot. Pain never goes away but varies considerably in severity, never getting as bad again as during that first week, but still significantly limiting my mobility. Flares at ovulation and right before menstruation, indicating an inflammatory component triggered by elevated hormone levels. (Many years ago now, for a few months at my sickest, I would have this same knee pain on one side only, for a single day, right before menstruation.)

Other issues: Wrists have become more sensitive over the past year, such that they will hurt while I grip things. This resolves when I do not do any weight-bearing on my hands (such as that which is common in yoga) and when I do not do any beading (a hobby I began last winter that requires lots of using pliers and pinching motions). Perimenopause is happening (the fun never ends) so hormone levels and relevant symptoms fluctuate from cycle to cycle. I broke my ankle (an avulsion fracture plus several torn ligaments) in October, which radically changed all ergonomics and effectively forced near-complete rest for my knees for two months. Retinal swelling issue (that developed when I first got sick in 2016 and flares with cortisol spikes) flared in December.

Things I have explored and tried:
- BioSil (collagen generator), Solomon's seal (joints), high-protein diet (collagen), black walnut extract (antimicrobial), no sugar (to combat inflammation and in case of candida overgrowth), Japanese knotweed extract (antioxidant resveratrol, anti-inflammatory, antimicrobial), religious adherence to physical therapy exercises for my knee issue and regular PT appointments (completely changed the shape of my glutes!), a vast network of bolster pillows and strange ergonomic adjustments, vitex extract (hormone modulation), loads of new shoes with varying degrees of arch support, intentional changes to my gait, heavily modified yoga to account for injury/ailments and prioritize strengthening over flexibility (important for those of us with hypermobility), curcumin (anti-inflammatory), magnesium (anti-inflammatory), licorice (DGL, antimicrobial, adrenal restoration), vitamin C (collagen).... Occasionally I will take CBD or ibuprofen to help with the pain.

Everything else is good. Digestion, energy, cognition, nervous system, sleep, other joints, etc. Ankle healed up great, which was a very pleasant surprise.

My current operating assumption is that I have hypermobility spectrum disorder - a cousin of Ehlers-Danlos syndrome that is characterized by hypermobile joints, MCAS, and dysautonomia - which is genetic but probably was triggered in my case by a combination of infections and now also perimenopause. (Ehlers-Danlos is actually the first diagnosis I got when I became severely ill in 2016 and sought out an infectious disease specialist to assess me for Lyme!) At some point I will haul myself back to an LLMD (I am so deeply done with doctors) and get tested for autoimmune markers, too. I will get acupuncture from two different well-regarded acupuncturists over the next month, so I will see what insights they have.

Any other thoughts? Other things to try? Does this fit the profile of autoimmune disease (I guess RA or lupus)? What could cause bilateral, focused knee pain all of a sudden, with no swelling, and no other issues (mostly)?

Thanks again if you read all of this. I know I asked basically this same question a few months ago, too, but wanted to offer an update since trying some of the suggestions.

my ex-partners father had knee pain issues

he had always been active and fit - and it just flared-up

he went for diagnosis - had scans and was told it was bone on bone - and he needed a knee replacement.
and he was all set to schedule that.
but, my father had 2 of those - so i relayed the details to him - it was basically extremely painful for 18montsh after each time - so bad he couldn't sleep more than a couple of hrs a night - and that was the start of his demise.

so the guy decided to try alternatives before going for surgery - he tried a lot of things - the thing that worked for him was what he called his daily dying flies
so twice a day for a few minutes each time he would lay on his back and just do cycling motions with his legs -

i think the idea was that this cycling of the joint without load on it would stimulate blood flow, joint lubrication, and healing - without any shock loading or weight bearing

he was having trouble walking more than 100 yards before that - after around 1 month he came on a all day walk with us.

hope its of some help

The obvious suspicion is that it's infected.

Does the knee pain flare up with herx?

saraeli said...

Garzie - I'm so suspicious when I hear about "bone one bone" joints, since plenty of people have that without pain, and plenty of people have pain with nice plump cartilage. ...

yep - that's exactly where i was coming from - just trying to avoid getting too wordy.
essentially the same outcomes from sham surgery and real knee surgery in many studies also
keep up the good work - there is reason to be hopeful

saraeli said...
Loski - I would look into FSM. Am I correct in thinking that FSM would address pain signals? Do you have any sense of how it compares to pulsed electromagnetic frequency, by any chance?

1. https://frequencyspecific.com/frequency-specific-microcurrent-practitioners/ everyone listed on here attended a minimum set criteria to be considered a "practitioner". Not all will be insurance friendly.

2. Yes and no. I recommend reading the book "The Resonance Effect" by Carolyn McMakin.

FSM uses two outputs. 1 is the "issue" 2 is the "tissue". Generally with a knee and case history taken into account, a practitioner will try different "tissues" that have to do with the knee(knee as a whole, tendons, nerve etc.., and try different "issues" on that tissue. Usually you start with like 20hz for irritation, 30 hz for pain, 40 hz for inflammation... scaring, toxins, viral etc.. The idea being (and the book goes way more into detail) that a cells voltage changes when dysfunction is present. Find the exact area effected and find the correct "issue" changes the resonance back into a healthy functioning cell, the body repairs etc.. Dr. Neil Nathan has a brief chapter in his book "toxic" on this too.

PEMF is a means to "give" a frequency. Generally PEMF treatments use 1 frequency (either on the low or high end) and theorize different approaches. However I bought a device from my FSM provider called an "ICARE PEMF" that plugs into my phone (app that practitioner uploads protocols too) and it uses PEMF to give FSM protocols.

Traditionally FSM uses towels and/or tens pads (although the current is at a far lower level than TENS).

Rife for another frequency example used a plasma coil in his studies. Modern adaptations went to a more direct electrical current.

This post is pretty long, and I did not read the whole thing.

So I dislocated my knee 10 months ago, while just kneeling, and pushing something rather heavy. It was discovered through an MRI that my ACL has been disconnected. Probably for a long long time. It was not swollen up. It was not a recent injury. I did her to 20 years ago but no MRI was done back then.

So my point bringing this up, you can have an injury years ago and even tear or rip an ACL and not be fully aware of it depending on what your pain threshold level is. Then you can continue with life without an ACL not knowing that your knee is a lot weaker than what it used to be which is what happened to me 20 years later.

When you don’t have a functioning ACL and don’t know it, it’s your other leg, muscles and tendons that are bearing the brunt. There are many people out there without a functioning ACL, and they are not aware of it. Because a lot of people have excruciating pain from it so it’s assumed we all do, which is not the case.

Another point I’m trying to make, if your knee is not the strongest- all of your other leg muscles do its best to hold it in place. If the nerve message to these other muscles is somehow distracted or changed, such as a low back injury, the result might be a weak And wobbly knee.

Just prior to my knee dislocation I had my third ever acupuncture, which resulted in my body feeling completely loosened. It’s hard to describe. My theory is my leg muscles that were holding my knee in place relaxed so much that my knee dislocated since it did not have an ACL holding it together.

I’ve been doing PT for that leg and knee for eight months now it’s better but not 100%.

Just for clarity, Girlie mentioned prolotherapy. The information I linked is for prolozone therapy. It seems the former is a subset of the latter.

"Prolozone is a technique that marries concepts from neural therapy, Prolotherapy, and ozone therapy. It involves injecting various combinations of procaine, anti-inflammatory medications/homeopathics, vitamins, minerals, proliferatives, and a mixture of ozone/oxygen gas into degenerated or injured joints, and into areas of pain."

Sara,

Since the initial onset of my symptoms from Lyme/co in 2009, most of my joint symptoms have been bilateral, but they have also been migrating and cyclical.

Sounds like you have had ongoing, consistent pain in the same area of both knees since last July. You also mentioned you experienced this exact same thing years ago around menstrual cycles. You also mentioned peri menopause.

I recall during the early years of my being on this forum, I found some veterinary scientific research on bartonella. Unfortunately, I don’t have the references. I remember the articles talked about the various effects bartonella had on the reproductive system, including barrenness, miscarriage, and birth defects. From that, I surmised that bartonella likely wreaks havoc in humans’ reproductive systems, especially females.

My last straw that broke the camel’s back was an acute upper respiratory illness in 2015. I was in my mid 40’s and went through peri menopause at that point. At the time, I still didn’t know about Lyme and thought hormones were causing my symptoms.

My thought is that peri menopause could be triggering a flare of symptoms from Lyme/co.

Dr Wayne Anderson wrote an article years ago describing what he believed about the symptom presentations of the various infections. He said, “ A dominant Babesia infection also can affect certain areas of the wrists, hands, ankles and feet. These areas can be painful, numb or experience temperature extremes.” I remember being surprised by that, as I had some wrist and ankle symptoms and never thought it could be related to Babesia. I found a link to that article - https://www.lymedisease.org/members/lyme-times/special-issues/lyme-book-reviews/strasheim-lyme-disease-treatment/.

Sara, how is/are your knee/s? Did you find any relief? I hope so.

Saraeli,

Despite of finding whatever is causing your knee pain, I found MSM cream very curative on joints. I lowers inflammation as well as can slowly restore the arquitecture of the joint in case something is injured.

I used this creams on horses and then later on I used on myself and many friends with great success.

Hope can help you.

prolozone injection is reasonably cheap and not much downside-cured my shoulder

I finally read this whole post.

The Frequency specific microcurrent , with the clinic locator are quite interesting. Looks like a more refined thus specific area use of the old rife machine.

Sara- i’m wondering if that bad smell that lasted for three weeks could have been some sort of a small dead animal that since dried up and the smell went away. I remember you had a different specific post on this mystery.

Have you tried a simple eight dollar Chinese Gau Sha Smooth friction massage tool? Of course Amazon has all kinds of them. The ones I have are surprisingly cheap considering they’re made of jade. These work great on tendons surrounding the painful area of a joint. When this helps this proves that the problem is actually the tendons and not the joint itself.

Post Edited (astroman) : 3/30/2024 10:10:55 AM (GMT-8)