Ehlers-Danlos Syndrome (EDS) is an often-painful medical condition that may develop in those with seemingly superhuman physical abilities in their youth. EDS presents itself in incredibly varied ways and thus, is difficult to describe concisely.
Imagine if — while young, you had Gumby-like yogic abilities with which to amuse your friends. Then, as you grew older, strange, body-wide pain became a frequent occurrence, perhaps moving from place to place in your body. As many as half of those who possess this genetic defect don’t realize it and thus, aren’t prepared for some of the potentially life-threatening complications that can arise. This is particularly true of those with the vascular type of Ehlers-Danlos Syndrome.
It is hard to know how to approach this rare condition. Is it a subject for comedy? Sometimes, it is. Some EDS sufferers have developed a fine sense of humor to help them deal with the inexplicable, unpredictable behavior of their body. Other times it is the cause of major pain and the source of personal tragedy, even death. The importance of an early diagnosis can’t be over-stressed, especially for those with the vascular type of Ehlers-Danlos Syndrome.
Ehlers-Danlos Syndrome is an inherited defect in a person’s ability to produce collagen. What is collagen, you ask? Collagen constitutes 25-35% of the protein in your body. It holds you together. Bad things can happen, virtually anywhere in your body if collagen is to any degree absent and/or defective.
There are a number of related syndromes, which we don’t have time to go into here: Marfan Syndrome, Loeys-Dietz, Ectopia-Lentis Syndrome, and others.
Self-Medicating Ehlers-Danlos Syndrome with the botanical Kratom
Many of those who suffer these disease syndromes have found their way to kratom, an herb that gently produces relief for pain, anxiety, and the depression that trouble them. Kratom, they say is far preferable to the opioid drugs that their medical teams usually prescribe. One big plus for those who will be medicating for an increasing lifetime of pain and often related digestive disorders is the fact that kratom’s primary analgesic alkaloids are about one-tenth as constipative as morphine, for example.
In looking over the treatments for those with Ehlers-Danlos Syndrome — and particularly the vascular type, where blood pressure medications are frequently prescribed to lower the possibility of aortic or other vascular ruptures — kratom may offer a little-known benefit. Kratom contains an alkaloid called Raubasine, which has anti-hypertensive, anti-adrenergic, and vasodilator activities, which may be useful in lowering blood pressure. Raubasine was used as the starting point to create the anti-hypertensive medication, Ajmalicine.
It should be considered that the amount of Raubasine will vary in kratom, depending on the strain and where it was grown. A discussion of this can be found at the bottom of this list of kratom alkaloids. To sum it up, it appears that Raubasine/Ajmalicine occurs in most genotypes of Mitragyna speciosa. Thus, it is wise to figure this into any calculations of how much blood pressure medication and/or kratom those afflicted with the vascular complication of Ehlers-Danlos Syndrome may need.
We might surmise that many of those with this hereditary condition, caused by a defect in their production of collagen, have found employment in the circus in years past as “contortionists”.
As suspected, we found this to be true. As one Ehlers-Danlos-Syndrome sufferer in her mid-forties pointed out, the pain of EDS does not develop until later in life. Thus, most contortionists — blessed or cursed with the hypermobility type of EDS — are not much older than 30.
How common? EDS Foundations says there is one case in every 5-10,000 Americans. Other sources say one in 400,000. Still other estimates exist. It is no doubt hard to decide who has it, if they are even aware of it.
Standard treatment? Depends on the type one has. There are six major types and five or more minor variations. Prescription and OTC painkillers, muscle relaxants, antidepressants, and anti-hypertensives are frequently used to treat the symptoms and complications. Many EDS sufferers are increasingly trying Kratom.
Treatment from a wholistic perspective would include nutritional supplements known to build healthy collagen. Naturopaths teach that everyone needs supplements to support healthy growth, repair, and maintenance of all tissues in a typically nutrient-deficient diet. When Naturopathic Doctor Peter Glidden was asked if genetic diseases could be helped with scientific nutrition, he gave examples of benefits he has seen in the course of his 27 years of clinical experience.
Testimonies Gathered from EDS sufferers who use Kratom
Kathrynn: “Ehlers-Danlos Syndrome causes a lot of subluxations and dislocations of joints, increases the risk of falls and injury, and is painful and exhausting all by itself simply because of the sheer work that our muscles must do to maintain balance in the absence of adequate support from tendons and ligaments ***due to the collagen defect***. Kratom is such a godsend to give rest and relief from these symptoms.”
When asked if EDS runs in her family. She replied: “I am the first to be “officially” diagnosed but yes, we see the evidence of it. My son has it as well.”
Jen: “I’m a random mutant. First case in the family. #SwitchedAtBirth”
Jen: “As for EDS: I have brittle bones and severe hypermobility. The constant stretching of the connective tissue in and around my joints has made it very hard for me to gain muscle strength (stronger muscles would help keep the joints stable, although the muscle tissue is also not normal). Kratom helps me with the fatigue and the pain, without the “high” feeling that I get from opiates/opioids.
Amanda: “I have EDS and fibro(myalgia). This totally sucks.”
Jen: “Been told that I have fibro too, but the EDS is reason enough to cause ALL of the issues that they say are fibro.”
Amanda: “Yup — and they used to say that fibro doesn’t affect or damage your joints. But now they’re saying it does. I honestly think that tons of people are just misdiagnosed. I saw a geneticist last week who doesn’t know his (butt) from a hole in the wall. I posted about it in an Illinois EDS group, so I’m pretty much screwed on getting an actual diagnosis unless my GP does some learning, which normally he will. There’s only really two people in Illinois that know enough. One is Dr.Tinkle in Chicago, who’s waiting list is closed. The other one is in Urbana, and doesn’t take adults. So yeah, my doc already thinks it’s my answer though.”
Irene: “My husband and I, plus our youngest 2, have EDS. We are on our second week of using kratom. So far, it has eased my husband’s joint pain and my back pain. In fact, I haven’t taken my prescribed norco since starting kratom. One of my daughters reports pain considerable pain relief also. The youngest daughter chose to be our ‘control’. She still has constant pain.”
Amanda: “With EDS I get a lot of subluxations. My index finger on my right hand dislocates often, causing my hand to ache. Any time I pick up something with weight, it pulls outwards, and is kinda gross. My right shoulder subluxes often. My knees wiggle around A LOT. When I lift my leg to walk, the bones of my lower leg pull out and forward so when I step back down it slams back into place. I get a lot of tight muscles and muscle spasms from my muscles trying to keep things in place. And I also get a lot of migraines from my neck. My hips like to shift so they’re not even and that causes a lot of pain when I’m on my feet all day. And let’s not forget the loose bowels. (hahahahaha) Kratom helps the pain. The pain of the muscles, the nerves that get jolted and pinched when things are going in and out all the time. It keeps me at work most of the time. When my shoulder is pinching and I’m in tears, it calms it down to a tolerable level so I can get up, get out, and do my thing. It takes the pain down in my hand so at work I can jump on a register and help instead of saying it hurts too much. I feel more productive and helpful. And let’s not forget it helps those bowels too. When I’m exhausted from my body holding itself together, I add in some White Vein Kratom to keep my energy up. And being in less pain helps my moods. I’m not as grumpy or depressed. YAY KRATOM!
Jen: “There are so many things that make it complex, and so many types. Some people have gastroparesis, dysautonomia, vascular complications, and the list goes on. It would take a book to cover all the different issues and what natural remedies might help.”
Amanda: “Another tip to deal with EDS is to keep your muscles strong. Do muscle building exercises whether you feel like you need them or not. And my doctor told me not to dare take it easy on myself. Since I heeded that advice I’ve been doing a lot better. Things aren’t slipping out of place as much anymore.
“Just by being me and doing the things at work that other people get amazed that a girl does, keeps me stronger. Management wasn’t letting me do some of these things. Even the little things, like pushing the shopping carts in the door. They didn’t want me to get hurt. But when I finally put my foot down, started pushing carts and doing the carry outs and moving the heavy stuff, my shoulder stopped slipping out. And I’ve had fewer headaches. And I’ve ditched the knee braces.”
Author Paul Kemp has made a hobby of finding natural ways that wholistic physicians use to correct medical issues, mainly blood-sugar-related. He writes frequently about the results he and others have seen using kratom.
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