Anyone with Ehlers Danlos and chronic pain flare ups find a solution?

skywxlker

I've long suspected EDS in myself after seeing some links between EDS and ME/CFS.

Some casual tests on myself show I am mild on the EDS scale. However I also have mild tissue deformities like a crooked rib, slight underbite, semi-flat feet, difficult to gain muscle, Osgood-Schlatter's in both knees growing up...

I suspect a glycine, vitamin A and K deficiencies along with any number of B vitamin deficiencies. Zinc, copper, manganese, possibly iron and cholesterol.

High estrogen, low androgens.

Idk if Weston A. Price ever talks about this specifically, but he emphasizes the importance of these nutrients coming from animal foods and organs.

And in my casual observations, it seems quite clear that deficiencies in these nutrients, create for a weak, feeble, dysgenic body as opposed to the strong archetypical high androgenized bodies.

Growing up I played sports and I was the runt of the pack while on the other hand I had some friends were absolute beasts. My body was flimsy, theirs were sturdy and built. Thick skinned as well. Never lifted weights but strong and powerful. And I noticed those friends ate beef and butter, home cooked meals. While the runts like myself ate processed foods and grains.

Personally I've getting success eating 5-6 eggs yolks, beef liver, cheese and supplementing with vitamin K, A, E, zinc picolinate, selenium, manganese, coq10, shilahit, raw honey and ghee.

cleaning up your environment, avoiding zeno-estrogens, soy, plastics, pesticides. living a more wild lifestyle, ie nature/hiking.

EDS people simply appear low T, low androgens. while the opposite are usually the strong among us... faster wound repairs, can take on more damage, not flexible, more gravitas in their physique.

LinDaiyu

This post lowkey been popping off

Ecstatic_Hamster

@mostlylurking said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

@Ecstatic_Hamster I was taking a higher dose of pregnenolone (around 200-225mg/day). However, my cholesterol spiked up and my normally sane endocrinologist threatened me with statins. So I cut my dose of pregnenolone in half and my cholesterol normalized within 6 months.

You may have to up it to a gram a day for this condition.
I can’t see why high cholesterol is a problem, frankly.

@Ecstatic_Hamster said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

You may have to up it to a gram a day for this condition.
I can’t see why high cholesterol is a problem, frankly.

Well, I didn't understand why my 250mg of pregnenolone would spike my cholesterol level either. But it made sense to me that it might be the cause of my higher cholesterol (total 236). I've never had that issue before and I take 135mg of prescription desiccated thyroid daily (NP Thyroid by Accella, great stuff). Increasing my thyroid prescription dose was clearly off the table as a solution.

My higher cholesterol really didn't bother me but it really got both of my doctors' attention and threats of statin drugs to lower it got my attention as statins are really dangerous. I had doubled my pregnenolone dose when I got so sick in 2020 from taking Bactrim antibiotic which blocked my thiamine function. My cholesterol was around 203-208 for a long time and the jump to 236 that got the doctors' attention happened in 2022. By then I had recovered my health (re. the thiamine functional blockage/deficiency). I didn't notice any negative symptoms when I lowered my pregnenolone dose back down. Maybe I simply didn't need the higher dose of it anymore.

The body converts cholesterol into pregnenolone as the first step on the way to other beneficial things like progesterone, etc. I reasoned that if my body felt that I had plenty of pregnenolone (from supplementation) that it wouldn't bother converting more cholesterol into pregnenolone. So I cut the dose of pregnenolone and my body resumed converting cholesterol into pregnenolone which normalized my cholesterol level.

Ray Peat on pregnenolone, written work
Ray Peat on pregnenolone, interviews

notmcas

@mostlylurking I'm surprised that they'd give you such trouble at a total of 236. Mine was 300 and my doctor wouldn't even consider thyroid despite my tsh being ~3 and I'm still young. I was able to game tests by upping selenium, vitamin A, and taurine pretty high but they still just call it a fluke and won't consider any kind of thyroid which I bet would lower it. My dad has the same issue of high cholesterol and temps around 95-96 and doc is constantly threatening statins and yelling at him, his tsh is about 3.8. Did you have to have an over range tsh to get thyroid? My temps are okay if I eat often but drop otherwise so I suspect low sustaining t4.

Ecstatic_Hamster

@mostlylurking i suppose it depends on your relationship with the health “professionals.” I wouldn’t have budged and that isn’t high at all. I know a physician who has dealt with Ehlers Danlos in his patients and he and I have talked for hours about it, and high dose pregnenolone is very helpful.

Also low dose naltrexone is something I would be all over:
https://www.ldnscience.org/research/low-dose-naltrexone-in-the-management-of-ehlers-danlos-syndrome-associated-pain

This is a case of a 35 year old female with history of Ehlers Danlos syndrome, small fiber neuropathy in her left lower extremity, and lumbar radiculopathy who presented to our pain clinic suffering from chronic widespread muscular and joint pain along with persistent neuropathic pain in the lower extremity. Her pain regimen included anticonvulsants, narcotics, and NSAIDS. Over time, her pain regimen as described was inadequately controlling her pain. She was weaned off her narcotics and started on the low dose naltrexone therapy (4.5mg per day). The patient had excellent response with reduction in her pain severity and increase in her daily functionality. At 12 months follow up, she continues to report excellent symptom control without any escalation in adjuvant medications and has resumed her occupation. The patient has tolerated the therapy without any adverse side effects.

Ecstatic_Hamster

@Ecstatic_Hamster I would also be probably using cannabis, CBD + THC. Rectal suppositories are easy to make and don’t make you high.
https://projectcbd.org/health/ehlers-danlos/

notmcas

@Ecstatic_Hamster Couldn't you dissolve the cbd+thc in tocopherols and avoid the whole suppository? My girlfriend does say it helps quite a bit during a flare up. Pregnenolone seems useful, I assume dosed a few times a day. I'm a bit more nervous about naltrexone, she is reliant on barbiturates for bad flare ups but doesn't seem to experience serious withdrawl since she's careful. And naltrexone isn't really solving the underlying issues?

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

I'm surprised that they'd give you such trouble at a total of 236. Mine was 300 and my doctor wouldn't even consider thyroid despite my tsh being ~3 and I'm still young. I was able to game tests by upping selenium, vitamin A, and taurine pretty high but they still just call it a fluke and won't consider any kind of thyroid which I bet would lower it. My dad has the same issue of high cholesterol and temps around 95-96 and doc is constantly threatening statins and yelling at him, his tsh is about 3.8. Did you have to have an over range tsh to get thyroid?

I suspect that they were just itching to find justification to put me on something; I'm 74 and all I take that is prescription is my NP Thyroid by Acella.

"Mine was 300 and my doctor wouldn't even consider thyroid despite my tsh being ~3 and I'm still young."
This clearly points to a problem with hypothyroidism. If your doctor won't consider prescribing a good desiccated thyroid product like NP Thyroid, you probably should be looking for a better doctor. Asking your local pharmacists which doctors are prescribing NP Thyroid by Accella would shorten your search. Your father probably has the same problem so would also benefit from your effort to find a competent doctor.

Ray Peat on hypothyroidism
Read this one first.

"Did you have to have an over range tsh to get thyroid?
No, I don't. My tsh has always been around .01-.001. TSH really isn't a helpful test. The range is way to broad on the test. TSH is short for "thyroid stimulating hormone" which is released by the pituitary. My current endocrinologist said he had seen that almost zero TSH before and said he would ignore that part of the test and rely more on my symptoms.

Read this one by Ray Peat for better understanding.

I added 200mcg of selenium last summer and the numbers on my blood tests noticeably improved. Selenium is needed to convert T4 into T3 via the diodinases.
"Selenium plays a crucial role in TH metabolism due to its location in the catalytic site of the three deiodinases [76]. Since the thyroid gland, with its capacity to store selenium, maintains a high concentration of this element, it is not easy to evaluate the immediate benefits of dietary selenium supplementation on selenium-containing enzymes [77]. Nonetheless, clinical data suggest that selenium deficiency is associated with an increased risk of a high anti-thyroid antibody titer, whereas selenium supplementation decreases thyroid peroxidase antibody titer, which could allow routine selenium supplementation as an additive tool to permit a reduction in the levothyroxine dose required for hypothyroidism therapy or to prevent progression of subclinical hypothyroidism [78–80]."

I was very low in selenium because of my mercury toxicity. Mercury causes problems with selenium.

notmcas

@mostlylurking That's interesting, I'd like to see her do a selenium test too. She reacts very bad to shots so maybe it's a consideration of heavy metals. For me I wanted to get something like NP Thyroid or even just levothyroxine since I actually think I convert pretty good I just cannot tolerate fasting without my temp bottoming. My doctor will not even consider it unless tsh goes above 5 though so I'd basically have to game it by fasting a while or consuming too much iodine or whatever trick to get it over the threshold for a test...

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

My girlfriend does say it helps quite a bit during a flare up. Pregnenolone seems useful, I assume dosed a few times a day. I'm a bit more nervous about naltrexone, she is reliant on barbiturates for bad flare ups but doesn't seem to experience serious withdrawl since she's careful. And naltrexone isn't really solving the underlying issues?

Vitamin E and progesterone work in similar ways.
Ray Peat on vitamin E and progesterone, interviews

Has your girlfriend removed all polyunsaturated fats (PUFA) from her diet? The body stores PUFA in the fat cells for years. Taking some niacinamide (smaller doses, several times/day) help with the PUFA problem.
Ray Peat on Niacinamide, written work
Ray Peat on niacinamide and free fatty acids, interviews

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

That's interesting, I'd like to see her do a selenium test too. She reacts very bad to shots so maybe it's a consideration of heavy metals. For me I wanted to get something like NP Thyroid or even just levothyroxine since I actually think I convert pretty good I just cannot tolerate fasting without my temp bottoming. My doctor will not even consider it unless tsh goes above 5 though so I'd basically have to game it by fasting a while or consuming too much iodine or whatever trick to get it over the threshold for a test...

Does your girlfriend have any silver fillings?

NP thyroid (a prescription natural desiccated thyroid product) would work better for anyone, I think. Synthetic T4 is really lousy stuff. Personal opinion. Your doctor sounds clueless. Trying to "game the test" really is a terrible idea. If you are not happy with the doctor, (I wouldn't be from what you've said here) you should find a better one. Think of doctors as shade tree mechanics (that's probably an insult to shade tree mechanics).
See this Ray Peat article

notmcas

@mostlylurking She has not removed all PUFA but doesn't have silver fillings. I think mold might have been a big contributor since she's lived in moldy homes and has flare ups before rain or after snow melt. I'm not sure what to do for mold toxicity at this point though. It was why I was considering the flowers of sulfur as per ray's suggestion for candida or fungal infections.

For the doctor issue, I mean I've tried another and a few online doctors. They basically say if tsh is not above say 4.5 or 5 they will not consider any treatment. Even when I asked my primary care if I could pay out of pocket for a thyroid test he got angry with me and said I didn't need that and prescribed me statins that I refused. I guess I could try an endo?

@notmcas Ask your local pharmacists which doctors prescribe NP Thyroid by Acella. It is a very common medication. It is the one pharmacists use to fill prescriptions for desiccated thyroid that do not specify the brand; it is used for the "generic" catagory.

You need to find a reasonable doctor. Read the Ray Peat Thyroid article. Take it to heart. Understand that there really are doctors who understand hypothyroidism, you just have to find one. You need a good doctor that is willing to test you every 6-8 weeks for several months in order to optimize your medication amount (my own took 9 months).

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

She has not removed all PUFA but doesn't have silver fillings.

PUFA is estrogenic and toxic. It is making her sicker. She needs to understand this and banish all of it from her diet. Taking small doses of niacinamide throughout the day would be helpful.
Ray Peat on PUFA written work
Ray Peat on PUFA audio

Has she EVER had silver fillings? Did she have any when she was a child? Was she ever around when a mercury thermometer was broken or in the building where it happened? Was she ever around when a fluorescent light tube or bulb was broken?

I lived through many years of being super sensitive to mold. It would make me almost catatonic. I'm not that way anymore. Removing all toxins from her environment (including pufa) will be helpful. Getting her high estrognen down and under control will be helpful. These things will take some of the burden off of her immune system so that it will be better able to function more normally.

Is she vaccinated? For covid?

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

For the doctor issue, I mean I've tried another and a few online doctors. They basically say if tsh is not above say 4.5 or 5 they will not consider any treatment.

This is the mind set of doctors in the United States who cow-tow to the American Thyroid Association. They have hijacked the industry. I believe it's criminal what they are doing. Their policies massively increase the number of lucrative (really sick) customers for the American Medical Industrial Complex.

Which country are you located in? If in the US, which state?

Have you considered a Functional Doctor? Or a doctor that practices Orthomolecular medicine?

Find a Doctor via the NP Thyroid/Acella website

Have you asked your local pharmacists which doctors in your area prescribe NP Thyroid by Acella? I still contend that this is the fastest way to find a doctor that has some clue about treating hypothyroidism.

notmcas

@mostlylurking she’s gotten the first vaccine, and I’ll just say it did not go well. I didn’t get it but schools were forcing it and all that. She’s never gotten silver fillings as far as she knows.

I’m in MA. I will try that approach, hopefully they’ll at least let me try some. I tried with thyroid online doctors and they refused under 5tsh too. I’ve actually felt pretty good on some NDT I ordered but I just don’t trust those non prescription products to be good.

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

@mostlylurking she’s gotten the first vaccine, and I’ll just say it did not go well. I didn’t get it but schools were forcing it and all that. She’s never gotten silver fillings as far as she knows.

I’m in MA. I will try that approach, hopefully they’ll at least let me try some. I tried with thyroid online doctors and they refused under 5tsh too. I’ve actually felt pretty good on some NDT I ordered but I just don’t trust those non prescription products to be good.

OK. The "vax" may well be exacerbating her problem. The FLCCC has protocol that may be helpful.

The pharmacists aren't going to let you "try some". But they will be happy to tell you which doctors are ordering prescriptions of NP Thyroid for their patients that practice medicine in your area.

@notmcas said in Anyone with Ehlers Danlos and chronic pain flare ups find a solution?:

she’s gotten the first vaccine, and I’ll just say it did not go well. I didn’t get it but schools were forcing it and all that.

Here is a link to Dr. Peter McCullough's protocol:
Dr Peter McCullough: How to Detox Spike Protein from Body (November 2023)

I am not a doctor and this is not medical advice.

notmcas

@notmcas Thank you, I can't say that the vaccine has made her any worse really since before it. But someone else was very affected.

I more meant that maybe a doctor could give a trial dose. But I think you have to be an MD to prescribe both NDT and synthroid. I will try through the Acella doctors or pharmacy though, maybe my dad get get it at least since his temps and pulse are so obviously low.

@notmcas Do you want to get well? A trial dose is not going to be helpful. It takes months of titrating the dose up to your optimum dose. You need a doctor who is familiar with treating people with desiccated thyroid who understands the procedure. It would be very helpful if you understood the procedure. So please read the Ray Peat articles that I posted earlier. The Broda Barnes book would also be helpful reading.