An Introduction to the Hypermobility Type of Ehler’s Danlos

Ehler’s Danlos is a group of inheritable connective tissue disorders related to the formation of collagen. EDS was named by two physicians, Edvards Ehlers and Henri-Alexandre Danlos, in the 1900’s. Hypermobile Ehler’s Danlos (hEDS) is the least severe type of Ehler’s Danlos, but it can still be a debilitating and cause a lot of serious problems. HEDS used to be referred to as Ehler’s Danlos III or type 3, but that terminology is being phased out. Most of the problems that arise from hEDS are skeletomuscular in nature, but because collagen is incredibly important throughout the body other serious problems may arise.

Collagen is a connective tissue that acts as the “glue” keeping our bodies together. Genetic alteration of EDS at the molecular level also leads to weakened defective connective tissue within the hEDS.

Hypermobile Ehler’s Danlos ranges in how it affects people. Sometimes it can cause small problems or it can be debilitating and completely disabling. HEDS is an invisible illness; you usually cannot tell someone has hEDS simply by looking at them.

Prevalence
HEDS causes more problems in women because they are typically already more flexible than men. Female hormones may also worsen joint laxity. Between 1 in 5,000 and 1 in 20,000 people have hEDS and experts think that it is largely under-diagnosed. hEDS may be the most prevalent inheritable connective tissue disorder.

Diagnosis
Unlike other types of Ehler’s Danlos, there is not yet a genetic test that can effectively diagnose Ehler’s Danlos III. Usually, the Beighton score is used along with a family and patient history to diagnose hEDS. Anything above a five out of nine on the scale is usually considered a positive result. Minor Diagnostic Criteria, as follows, are also important in the diagnosis of hEDS.

“Minor Diagnostic Criteria for the Hypermobility Type of EDS^[1]

• Family history of similar features without significant skin or soft tissue fragility in a pattern consistent with autosomal dominant inheritance
• Recurrent joint dislocations or subluxations
• Chronic joint or limb pain
• Easy bruising
• Functional bowel disorders (functional gastritis, irritable bowel syndrome)
• Neurally mediated hypotension or postural orthostatic tachycardia
• High, narrow palate
• Dental crowding “

Before seeing a geneticist, Classical EDS and hEDS may be hard to differentiate. More temperate cases of classical EDS may be misdiagnosed as hEDS initially. Because the two conditions have different common complications receiving a correct diagnosis is crucial for treatment.

Genetics

It is generally agreed upon that hEDS is passed on in an autosomal dominant manner. This means that the passing of hEDS is not linked to one gender or the other and that only one parent must have hEDS for their children to as well. It also means that those with hEDS have a 50% of passing it on to their children.

People with hEDS almost always have one parent with EDS as well. In some cases, Ehler’s Danlos can be well-managed in one generation and a disaster in the next. For example, my maternal grandmother and mother both get a high score on the Beighton test and meet the diagnostic criteria for hEDS but have never been diagnosed with hEDS.

In more rare cases a de novo mutation (basically a brand new mutation) may arise; patients may have hEDS without biological ancestor’s having the condition. Some cases of hEDS have had a genetic factor linked to their condition, TNXB, but not all patients with hEDS have “haploinsufficiency of tenascin-X (encoded by TNXB) associated with EDS.”^[2]

The Ehler’s Danlos Network claims that Ehler’s Danlos can also be passed on in an autosomal recessive pattern. It is also suggested that carriers of this autosomal recessive hEDS may have symptoms of hEDS but without “skin hyperextensibility, easy bruising, or other hematologic manifestations.” ^[3]

The genetics behind EDS can be complicated, but usually hEDS is passed along in an autosomal dominant fashion with these few exceptions. When these exceptions happen we may see hEDS without a family history or some strange cases of recessive carriers having symptoms.

Symptoms
Psychological

• Anxiety and depression are common in hEDS and are exacerbated by poor sleep and pain.

Neurological

• Migraines are prevalent with hEDS patients.
• There seems to be a higher occurrence of terrible vision in hEDS. HEDS sufferers are more likely to have an eye prescription of worse than -6.0.
• Postural Orthostatic Tachycardia Syndrome (POTS) is a type of Dysautonomia (dysfunction of the autonomic nervous system) commonly seen in hEDS sufferers. There is speculation that hEDS is one of the important causes of POTS.
• Inner ear problems in hEDS patients lead to balance problems and potential hearing problems.
• Neuropathic pain, pain caused by damaged nerve fibers, also occurs in hEDS patients.

Skeletomuscular

• HEDS patients routinely suffer through subluxations and dislocations. These joints that “pop out of place” may be large joints of small joints.
• Tendonitis and bursitis are also common in hEDS.
• Degenerative joint disease (DJD) is more likely to occur at a younger age in hEDS.
• Temporomandibular joint disorders (TMJ) are also more likely to occur.
• Iliotibial band syndrome or “snapping hip syndrome” is commonplace in hEDS patients.
• Osteoporosis, especially at a younger age than expected, is also a frequent manifestation of hEDS.
• HEDS patients are more likely to walk slowly and to have a shorter gait than their peers due to joint pain and problems.

Gastrointestinal

• Bowel and digestive problems are often seen in Ehler’s Danlos. A few prevalent comorbid (conditions occurring together) conditions are IBS, gastroparesis, acid reflux.

Dermatological

• HEDS patients often have veiny skin that is velvety, stretchy, thin, and soft without moisturizer.
• Slowed healing and scarring is also often seen with hEDS.
• HEDS patients are more likely to have molluscoid pseudotumors, fleshy lesions associated with scars.

General

• Ehler’s Danlos patients are at a higher risk of prolapse, especially uterine prolapse, and in general.
• Dental crowding and periodontal disease are common in hEDS patients.
• Sleep impairment, usually caused by joint pain, is a common symptom of hEDS.
• Hernias are more likely to occur in hEDS populations.

Hematological & Cardiovascular

• Easy bruising or bruising with no obvious cause is common in Ehler’s Danlos.
• Aneurysms are more frequent in EDS populations compared to the general population.
• Hematological manifestations of hEDS mimic von Willebrand disease and can lead to hypocoagulability (blood that takes longer to clot).
• Raynaud syndrome and acrocyanosis, the fingers, face, or toes turning blue or white due to poor blood flow, is accepted as a usual occurrence.
• Mitral Valve Prolapse (MVP) is more common in hEDS patients.
• Aortic dilation is also commonly seen in hEDS patients.

Treatment
To be frank, I find treatment options for hEDS pathetic. The best options we have are physical therapy and low-impact exercises such as swimming or pilates. However, there are very few physical therapists who actually know of hEDS and can help without worsening symptoms. Many physical therapists incorporate stretching, some of which is a terrible idea if you have hEDS. It is important to have a physical therapist who won’t make you worse. There is a book for physical therapists, but the tiny thing is $70- inaccessible for many people bombarded by medical bills.

Managing pain is one of the primary goals in treating hEDS. However, pain treatment is controversial. Experts and patients argue over the effectiveness and safety of using opiates, marijuana, and even anti- inflammatory medicine for long-term use in hEDS. More research needs to be done on what helps hEDS patients most.

Mobility assistance devices and braces can also help some patients. Everyone knows about ankle, wrist, and knee braces. With hEDS, you learn about the strange braces and splints- like ring splints for finger joints or hip braces. These devices are incredibly helpful for many but incredibly expensive. A single ring splint for a single joint on the fingers averages $50 and thumb splints can be hundreds of dollars.

Occupational therapists are sometimes recommended for hEDS. They can help teach how to conserve energy, fight fatigue, and think of solutions for problems caused by your chronic illness. Even with treatment many hEDS patients have trouble working. Therapy is also suggested to learn how to live with and deal with this condition and the depression that often accompanies chronic pain.

Prognosis
It is common for people to degenerate as they get older; aches and pains get worse with passing years. The good news is that hEDS patient’s joints get less loose as they age. The bad news is that in every other way you get worse with age with hEDS. HEDS is a lifelong disease.

Arthritis and degenerative joint disease are seen much earlier in life and, therefore, are given the opportunity to get much much worse. For example, I was diagnosed with DJD in my hip at 18; at 24 my DJD is even worse. I’ve been told to expect it to become harder to manage as I age.

All the literature suggests that hEDS does not affect life span. However, a life-threatening complication, aneurysms, are more commonly found in hEDS than the population. I am not sure what to make of this contradicting evidence so interpret its meaning as you like.

Quality of Life & My Experience
If you have read the symptoms for this condition it may not take a detective to figure out that hEDS can lead to a worsened quality of life. Joint pain is the most common complaint among hEDS sufferers. Pain is severe enough to hugely lessen our quality of life. Constant pain in multiple joints, dislocations, and easy injury is exhausting to cope through.

My experience with hEDS has been terrible and incredibly painful. In the past 72 hours I have dislocated/ subluxated/ hurt somehow my left hip, my right shoulder, my right thumb, my right wrist, and my left ankle. Popping joints in and out leads to a lot of inflammation and pain, but I have regular pain even on top of those joints that won’t stay in place. Discs in my lower back, SI joint problems, and a constant rib pain also plague me daily. The only time the pain recedes is when I swim- which is hard to do when your body is literally falling apart. That long list of problems is common with other hEDS sufferers. Collagen is widespread so our problems are as well.

Many others with hEDS have it even worse than I do. Some people are unable to work in any way and are completely disabled. HEDS has effectively hit the pause button on their life. Because hEDS isn’t common we don’t get much understanding or really effort from medical professionals.

Since I was diagnosed three years ago I have watched about three dozen people in my various support groups commit suicide. No one would take their severe pain seriously and they couldn’t handle it anymore. HEDS pain needs to be recognized, acknowledged, and treated effectively. Whichever side of the marijuana and opiate debate (whether they should be used to treat hEDS pain) you are on, it is important to at the very least acknowledge what these people are struggling through and how their quality of life is affected.

I contemplated whether I should add this paragraph because it is very personal. However, I think it will enhance understanding of how much hEDS has touched all aspects of my life and does so to many others. It is common for women with hEDS to have complications with pregnancy, fear to passing on their bad genes and suffering, or simply cannot have children due to their health. For me, the genetic component of hEDS is a primary reason I made the decision never to have biological children. I do not like 50% odds and have no way of knowing if a biological child would have a severe case or not. I don’t want to pass pain on; there is enough suffering in the world. It was not an easy decision, but a tough one that hEDS women are forced to make.

Learn More
Here are some great resources on hEDS:
http://www.ncbi.nlm.nih.gov/books/NBK1279/
http://www.ednf.org/hypermobility-type
I recommend using EDNF resources only on this page. Some of their other information is potentially harmful to patients.
My book will also have an extended section of EDS.
[1] http://www.ehlersdanlosnetwork.org/hypermobility.html
[2] http://www.ncbi.nlm.nih.gov/pubmed/23284009

[3] http://www.ncbi.nlm.nih.gov/books/NBK1279/

The Problem With Ehler’s Danlos National Foundation (EDNF)

I usually talk and write about POTS and Dysautonomia. Like many people with POTS I also have hEDS (Ehler’s Danlos). The Ehler’s Danlos National Foundation (EDNF) had a conference this weekend. One doctor, Dr. Lavallee, managed to outrage most of the EDS community with just one slide.

Dr. Lavallee put up this slide. If you cannot read it says:

“Just Do It!
Do not feel sorry for yourself
or I will introduce you to:
-US Veteran
-baby with retinoblastoma
GET OFF YOUR NARCOTICS”

Understandably people are upset. I have talked about it before and I will say it again. Stop comparing illnesses. Stop comparing pain! It is even worse coming from a doctor. In telling you he will introduce you to someone with it worse he invalidates your suffering. I also have no idea why being introduced to a US Veteran would make me “stop feeling sorry for myself.” My partner is a veteran and I think he would agree with me that EDS sucks. Ehler’s Danlos isn’t a joke and should be taken seriously. Plenty of Ehler’s Danlos patients have ended their life to get away from the pain, which brings me to Dr. Lavallee’s second point.

I understand wanting to avoid narcotics when you can, but sometimes they are the only thing keeping some of us alive. There comes a time in a lot of painful chronic conditions where you cannot and don’t want to live in that much pain. At that point isn’t it better to give patients narcotics so their quality of life is decent enough to not want tot kill themselves? I’ve heard a lot of stories of people at this crossroads. After a certain point of being in that much pain everyday narcotics ae the only alternative to suicide. Dr. Lavallee making a blanket statement of stopping all narcotics is just ignorant.

After this, and a lot of outrage, the EDNF posted this:

“I am not even home yet. I’m still in a hotel room, watching outrage unfold at Dr. Lavallee’s presentation of less than 24 hours ago, while now trying to form a response on a cell phone.

Conference materials include: “The presentations and materials remain the intellectual property of the presenters, and all rights are reserved to them. EDNF does
not control and is not responsible for the content of presentations.”

This is for two reasons. EDS knowledge changes quickly and views on treatment are radically different. EDSers are not best served, in my view, by having their access to these differing perspectives restricted to a narrow window of what is accepted this year, but by seeing the wide range of approaches and deciding which are valid for themselves. We are very different zebras. We are not all the same. What works for one may not, perhaps will not, work for another.

Second, speakers volunteer: time, thoughts, expenses. They come to talk to us because they want to, not because they’re paid to or told what to talk about or how to think.

Last in all this, I’d ask you to remember you are ripping apart a fellow EDSer, and one who helped EDNF survive and thrive. Dr. Lavallee has EDS, what he talks about he talks about from experience, both his own personal experience and that of his many EDS patients over decades. His perspectives may infuriate you, but they work for him and those he treats. Are those EDS experiences simply wrong because they’re not the way some of us manage our own EDS? Are some with EDS better than others? We’re a large, complex community and we’re never going to agree completely on how we each cope with having our own particular version of EDS.

Anyway: I am about to be gone on travel to get home, so I ask you please to be a little easier on us until we are all back to
our loved ones and can actually think. We can discuss this more over coming days; nothing that happened will be changed, and while outrage is fast, careful thought is not. It hasn’t been a full day yet since conference ended and typing on my phone is not easy on my EDS (and aging) fingers. Thanks for your patience.”

The EDNF should screen what is in presentations and presenters. The whole “intellectual property” excuse sounds like them trying to distance themselves and take away blame pointed their direction. It was still their conference; they are supposed to be helping those with EDS and supporting us. Instead they let it another doctor to tell us it is in our heads and we are being hyperbolic. Haven’t we had enough of that? Wasn’t the EDNF formed so we could raise awareness and education about EDS and stop this very thing from happening? If we can’t even get our own experts to show an ounce of compassion what hope do we have for the rest of the medical community and even society in general?

The EDNF points out that Dr. Lavallee is a volunteer and volunteered his time, energy, expertise. Well he ended up hurting this community more than he helped. That is like volunteering at an animal hospital to kick puppies, but we will let him kick puppies because volunteered, right?

This part is even more infuriating. Dr. Lavallee has EDS?! Yes, he has EDS and still can’t muster any sort of compassion or empathy for other’s with EDS?! I don’t understand why him having EDS means that we can’t disagree with his methods or dislike him. Knowing he has EDS basically just confirms my thought that he isn’t the greatest human being.

The EDNF talks like Dr. Lavallee just suggested a controversial treatment. No, he compared illnesses in an unhealthy, unprofessional, and unacceptable matter. He implied that we all “feel sorry for ourselves” which is not true. EDS sucks but the community doesn’t throw many pity parties. I see a community full of strong people doing the best they can through a really difficult illness.

In addition, the EDNF claims that his perspectives work for him and those he treats. After reading comments about Dr. Lavallee, I don’t think it sounds like he is so terrible one on one, but I suspect he just doesn’t make his backwards views known. The reviews are mixed but no one mentions him comparing illnesses or being a jerk. I hope he doesn’t say these things to people on an individual basis. Maybe we are now seeing his true colors? One patient in their review said that Dr. Lavallee claimed he could make her symptoms basically go away through exercise. A lot of us have tried exercise but it isn’t a cure-all for most. So no, EDNF Dr. Lavallee’s “perspective” doesn’t always work for his patients.

The EDNF’s mission statement states that “Ehlers-Danlos National Foundation creates resources for those affected by the connective tissue disorder, Ehlers-Danlos syndrome…[by] Providing a network of support and communication.” Well the only support I see from the EDNF on this issue is of Dr. Lavallee.

Dr. Lavallee is a large supporter of the EDNF and has been involved with them for a very long time. I suspect this is part of the reason they sided with Dr. Lavallee rather than supporting us like they should be. It is just disgusting.

(I’m not actually going to make my own EDNF with blackjack and hookers)

Cake is Infuriating: Chronic Pain in the Movies

For those of you who don’t know what I’m talking about, Cake is a movie with a Jennifer Anniston about a woman in chronic pain. When my partner first downloaded the film I was really excited to watch it. Chronic pain is a real struggle for so many people. Our story will finally be told!

I got my hopes up, but Cake was absolutely infuriating. They had such a great opportunity to share our story and fell entirely short. Not only is Cake a terrible representation of what it is like to live with chronic pain, the film seems to go out of its way to make us look bad. This is a common issue. People with chronic pain are commonly treated like criminals for being in pain. Our entire struggle is diminished as “drug seeking” and society basically shames us for the pain we have no control over. Cake is making these misconceptions worse.

Chronic pain does not equal addiction!

Claire, the main character of the film, falls short in so many ways. Claire is an abrasive addict. She is obviously addicted to opiates. She likely is actually in severe pain, but she is not responding in a healthy manner. There are people who take opiates for chronic pain and get help the correct way. Claire does not. She lies to her doctor to get medication. She drives to Mexico to get medication. She steals from her dead acquaintance to get medication. She drinks in excess while on medication. She takes an incorrect dose of her medication. She even overdoses as a response to stress!

For these reasons, Claire is an ideal character to represent addiction. The problem is that, for many, she represents someone with chronic pain. She fails us.

Pain isn’t Passing

In Cake, Claire’s pain begins as a part of a car accident in which she lost her son. Claire is in physical rehabilitation to make improvements over her condition. We are shown an aqua therapy session in which Claire gives up quickly due to pain and the therapist complains about her lack of improvement. Eventually, when Claire begins to try harder; things begin to magically go her way. This upsets me greatly. The most frustrating misunderstandings people with chronic pain endure are perpetuated by this horrible movie.

For example, chronic pain is not on a timer. Chronic pain isn’t usually pain from an accident that should continue to improve in time. For a lot of us our problems will get worse with age or stay the same. That “you aren’t better yet?” mentality is so frustrating! Explaining that this is the state of your health and it isn’t going away anytime soon is incredibly taxing.

Hard Work… Impossible Work

You just need to “work harder and you will be better!” This mentality, encouraged by Cake, is also harming those of us with chronic pain. In my condition, (Ehler’s Danlos III) hard work and physical therapy are often required to heal from injuries. However, no amount of determination or hard work is ever going to magically fix the collagen in my joints. I will continue to have problems. My control over my recovery is limited by my underlying condition. Just like many other chronic pain sufferers.

At one point in the movie Claire decides she is done with drugs. She even dramatically tears out her IV. I seriously can’t roll my eyes at this enough. In Cake, Claire’s determination was enough to stop the meds and deal with her pain drug-free! This is far from reality.

For me, pain meds are the last thing I try. If I am on pain medication for an extended time it is because I would not be able to function, survive, and/or live in the amount of pain I am in off of medication. There are too many side effects for me to be on them unless it’s a necessity. Opiates aren’t some nice crutch you start and stop on a whim!

You would never praise a diabetic for suddenly forgoing insulin. If Claire needed the amount of opiates she was consuming, suddenly stopping is unrealistic. Stopping opiates suddenly after an extended amount of time is simply a bad idea. That should have been a decision she made with her doctor. Cake continues this belief that opiates are only for those who aren’t mentally strong enough to handle pain. Taking medication for severe chronic pain is not a sign of weakness. Stop stigmatizing treatment for chronic pain!

Chronic Pain and Suicide

The single thing that I appreciated was that Cake approached topics of depression and suicide ideation. Physical pain can have a huge impact on mental health. It is under-addressed that a lot of people in chronic, severe pain think about suicide and self-harm. It is actually quite natural for these thoughts to come up in chronic pain patients.

What about it wouldn’t be natural? If you were in pain constantly would you too not wonder about escape? Patients who feel this way should be offered support and therapy; under no circumstances should someone in severe long-term pain be shamed. Whether patients disclose depression, suicide ideation, worries of dependency, or ask for a pain medicine there is no reason they should ever be treated as a criminal. Any open and honest communication should be encouraged.

If the pain is severe enough that suicidal thoughts are occurring then coping mechanisms need to be enhanced. Often chronic pain patients do not ask for help with these coping strategies despite medical professionals being equipped to help. Both the act of admitting depression or suicidal thoughts as well as requesting additional pain relief are extremely stigmatized. Therefore, patients aren’t talking to their doctor and getting the help they need before suicide becomes the only viable option left. This is a topic that needs to be talked about more and I appreciate Cake addressing it. Addressing depression and suicide ideation really is the only thing that movie did correctly!

I also believe that it is necessary for patients to be able to be honest about worries of dependency, tolerance, and addiction to opiates. By criminalizing opiate addiction, we have made it so that these patients, like Claire, cannot get the help they need. If Claire wasn’t worried about being judged or treated like a criminal she may have been able to get the treatment she needed for her opiate addiction.

Cake is Just Wrong

This movie genuinely had me in tears, and definitely not because it was a truly moving. So many people who were in my life have treated me like I’m Claire. They treated me like a drug addict for being in pain. This is how a big part of the world sees us. It already is terrible to be in pain every waking moment. Those around you seeing you in pain and still treating you like a drug addict due to the stigma behind opiates is even worse. I know for a fact that a portion of my family would rather see me screaming, crying, and writhing on the floor in pain rather than have me take opiates. For me, that is the most heartbreaking part.

So to Cake with all its misconceptions: Not all of us are in pain due to an accident. Not all of us are in pain because we aren’t working hard enough at rehabilitation. Not all of us will get any better. Some of us will get worse. It will not be because we weren’t trying hard enough.

We are nothing like Claire. We want to get better. We want it more than anything. We hate taking the drugs. We avoid them when we can. We don’t lie or manipulate doctors. We are not weak because we take medication. We are strong from the pain we have fought all these years.

Most importantly, we are in pain and every day is a battle. So give us your support, not your judgement.

Medical Marijuana

Medical marijuana is a hugely controversial topic, but it doesn’t need to be! Much of the current research is biased towards finding the dangers of marijuana instead of looking at possible medical use. Researchers who have studied cannabis have found many uses for marijuana (in adults).

Where is it Legal?

Recreational and medical use is legal in Alaska, Oregon, Washington, Colorado, and Washington DC. In these places you can get marijuana without a red card, or medical card. However, if you have a chronic illness I strongly recommend getting a medical card. You don’t have to pay as much in taxes and the people who work in medical clinics are even more helpful.

Medical marijuana is largely separated from the medical world. I have never even had it suggested for pain by a doctor. I had to seek it out information on medical marijuana on my own. Some medications have made it through trials and are prescribed, primarily by oncologists, for severe diseases such as cancer. If you are interested I recommend speaking to your medical doctor about it.

One reason medical marijuana is so separated from the medical community is because marijuana is still a scheduled 1 drug. This means it has been found that cannabis “has no medical use”, “high potential of abuse”, and “cannot be safely used under medical care”.

To give you a better idea of what this means, both meth and cocaine are Schedule II. That means these dangerous drugs have been determined to have medical use as well as being highly addictive. I think this is a huge misclassification and agree with John Gettman who pointed out, “Cannabis is a natural source of dronabinol (THC), the ingredient of Marinol, a Schedule III drug. There are no grounds to schedule cannabis in a more restrictive schedule than Marinol”. If we are making medicines from cannabis then how can we say it has no medical purpose?

 

Is it Safe?

Marijuana has no recorded incident of overdose. Not only does marijuana have fewer deaths than alcohol, but health costs for alcohol outweigh the costs for marijuana by eight times. Both alcohol and tobacco are legal but are considered far more dangerous than marijuana. A study was done on the link between marijuana and hospital visits. They found that marijuana did not increase the chance of going to the hospital.

Alcohol, and many other drugs, are neurodegenerative. This means drinking alcohol kills brain cells. Research suggests that marijuana may have the opposite effect.

To reach the lethal threshold of marijuana someone would have to consume 1500 pounds of marijuana in fifteen minutes. Therefore, marijuana users don’t have to be worried about overdose. That isn’t to say that all marijuana use is safe.

Possible side effects of marijuana use include dry mouth, paranoia, increased heart rate, tiredness, confusion, or memory problems. Because cannabis can raise your heart rate, I recommend being under care of a doctor if you have POTS and want to try marijuana. These side effects may be worse in people with mental illness.

There haven’t been many studies about medical marijuana and how it relates to driving safety. We do know that people should avoid consuming marijuana and operating any machinery. Driving accidents are a real problem with any drug usage and are potentially the most dangerous threat widespread marijuana usage holds.

As of now, evidence suggests marijuana as relatively safe for adults. However, when used regularly prior to turning 18 marijuana can cause problems. Research has shown that there is a drop in IQ associated with teen marijuana use. There have also been studies that suggest teen marijuana use may lead to memory problems.

Pain Management

Doctors are cracking down on drug seekers and those of us with chronic pain are taking the worst hit of all. It is true, many people abuse these drugs. Opiates have the potential for addiction and tolerance is a real problem. Despite these problems, researchers are taking their sweet time looking at marijuana as an alternative pain relief method. Instead of looking into a drug that has been proven beneficial (enough to make medical marijuana legal) politics is getting in the way of researching marijuana more and potentially helping many people.

Surprisingly, I have found that medical marijuana has less of a stigma than opiates (at least in Colorado). I have been to too many doctors with kidney stones only to have them tell me I’m drug seeking and turn me away with no relief in any form. The pain relief you get from marijuana is extremely helpful, but they won’t treat you like a criminal (unless you want to get into the whole federal crime issue). People who work at dispensaries are generally very caring and knowledgeable about their product. They have treated those of us with chronic illnesses with more kindness that most doctors have. They can make great recommendations as to tinctures, concentrates, edibles, and flower. Don’t worry if you don’t know what these words mean; they will be happy to explain them to you.

Cannabis has a lot less of a chance of addiction than opiates. There is a chance for addiction, but not due to physical dependency. Addiction occurs due to psychological dependence. More research needs to be done into the relationship between marijuana and addiction.

 

Medical Purpose

Medical marijuana comes in many forms. There are edibles, smoking, capsules, vaporizing, and now even juicing the plant. What works best medically depends on the type of symptoms or just personal preference. Different strains are better for different things. The two primary types of cannabis are Sativa and Indica. Sativa is more energizing while Indica is more relaxing. Indica is best used for sleep problems and pain. Sativa works best for depression and fatigue. Depending on the strain, both Indica and Sativa can stimulate appetite.

After a study on cannabis from the Institute of Health concluded that marijuana should not be used to treat any disease. However, the study concluded that marijuana can be valuable at controlling symptoms of these diseases. One such symptom is paresthesia. Marijuana is especially good for this “pins and needles” pain where opiates commonly fail. Marijuana also works as a muscle relaxer, and can help with multiple sclerosis, HIV, Tourette’s, and cancer.

While Marijuana may cause respiratory symptoms and side effects, the research that has been done indicates that smoking marijuana doesn’t cause lung cancer. In fact, the opposite is thought to be true. Research in its infancy suggests that marijuana may have cancer-fighting properties. While only anecdotal evidence in humans is available, this could have huge implications on marijuana’s scheduled status. Harvard researchers found that when mice with lung tumors were given cannabis cancer growth was cut in half. Nearly one in four of the mice were completely cured and the remaining saw a decrease in tumor size.

 

Cannabidiol (CBD)

It is possible to get marijuana’s health benefits without getting high. THC is psychoactive, but CBD (Cannabidiol) is not and has more medical uses. Cannabis with high CBD causes less memory impairment due to competition for the CB1 receptor. Strains with high CBD have significantly more medical value than the typical strains used for recreation. CBD is also completely legal in all 50 states without a medical license.

Despite the fact that marijuana may have negative effects on a child’s brain, some parents choose to give their severely ill children cannabis. Charlotte Figi, a young girl with Dravet syndrome (a severe seizure disorder), went from having hundreds of seizures a week to a single seizure a week. Charlotte used a strain of cannabis with high CBD content. There is now a similar strain named after her called Charlotte’s Web. Using strains that have a high amount of CBD and not THC may keep the negative memory and intelligent side effects at bay. Therefore, we may see research suggesting medical marijuana is useful to children and teens.

In addition to helping with seizures, CBD has also shown to have antimicrobial properties. One study found that cannabis may even help with acne. Studies have also found that cannabis may reduce the spread of HIV as well as decrease the risk of developing diabetes.

While cannabis may be dangerous in mental illness, CBD has potential use in mental illness as well. Cannabidiol (CBD) has been shown to work as well as traditional antipsychotics used in schizophrenics. Additionally, there are far fewer side effects in patients who were taking CBD than these antipsychotics. Cannabis also is helpful in anxiety and depression.

 

 

Any drug that has the potential to improve someone’s quality of life should certainly be researched more. Keeping marijuana as a schedule I drug is preventing us from seeing all the potential medical use marijuana has. While many of these studies are small and new, there is definitely hope that medical marijuana will be helpful to treating a variety of ailments.

 

Let’s Have a Little Talk About a Thing Called Science

When you have an illness that isn’t understood well by doctors it is common for you to have to learn from the internet. Now for those people who haven’t been to medical school (um like all of us) it can be hard to find good, reliable, and clear information. So many times people end up getting their “science” from a wholly unscientific sources. I see patients get caught up in pseudoscience and taken advantage of through these channels.

 

Four Tips to Determine if Something is Scientific and Worth Listening To:

1. Check the source

Most of the time checking the source is the only step I have to take to determine if an article is reliable. Is it from Scientific American or is it from Naturenews.com. Scientific American is much more likely to be based on science than Naturenews.com. Doing a quick search of the source can tell you whether to even consider the information.

2. If it sounds too good to be true- it is.

I see this all the time. “Essential oils will cure you!” Anything claiming to cure your incurable disorder should be approached with caution. I don’t deny that certain strange things help some people, but claiming to cure it is ridiculous.

3. Become an expert on your disorder

If you go out of your way to learn everything you can about your disorder you are going to be able to see what makes sense and what doesn’t. Remember knowledge is power, and it’s especially powerful in this game.

4. Ask someone who knows more

I wish I saw more of this. People will supply information to the rest of their peers without really considering whether it is valuable. This perpetuates the popularity of these pseudoscience myths. Simply asking others, who may know more than you, if something is “real” is incredibly valuable.

If you use more scientific sources and learn about your disorder you will be better able to contribute to your care. You are going to lose respect from your doctor if you suggest you should try essential oils and they will be less likely to listen to your suggestions. Approach this with caution. Doctors also don’t like when you know more than them. Egotistical jerks.

Lifestyle Changes: Which ones are worth it?

A lot of my experience with POTS specialist has been telling me things I can’t do. So which ones (for me) actually are worth a try and which ones just lower quality of life for not much payoff? These are just what have been my personal experiences over the past 5 years.

Carbs and Sugar: Try it. One of our fellow POTSies, Ella (Deliciously Ella), changed her diet and saw a huge change in her symptoms. That is great but not everyone does. I have found that if I cut out most carbs and simple sugars I feel a bit better, but it really is just a bit. So try it. See if it is worth it and support another POTSie. It is worth it to mention that a lot of her recipes are not Gastroparesis friendly. If you have a broken stomach beware.

Stop Drinking Alcohol: Hell no! If I make sure to remain hydrated then I am going to drink. I was diagnosed with POTS when I was 19 and I have been drinking since I was 21. I love red wine and if I want to drink and be social the one time a week I can actually have a social life I am going to. I am in my young 20’s and POTS already feels like it has murdered my social life. I drink extra water, have extra salt, and say do it. I am not going to let POTS stomp out my entire social life. Just use moderation people. POTS + a hangover can set you back days.

Stop Singing: What? NO. I had a doctor tell me to stop singing. It is supposed to help. Um are we trying to get rid of any fun I could possibly have? I sing in the car and that’s not going to stop.

Working Out: HahaHaha. The fact that working out is supposed to help in a condition where we have exercise intolerance is the universe’s cosmic joke on us. For me personally this doesn’t go to well. I try and work out and end up passed out later that day and even worse the next day. It seems to be worth a try for most people but be careful if your POTS is severe.

Eat a Ton of Salt: Do it. I have at least half a dozen kidney stones a year. They think it is both genetic and from my salt intake but I keep having salt. Because as much as kidney stones are terrible increased salt consumption helps me so much on a day to day basis.

Drink a lot of water: Try it. Don’t go and drown yourself because that is possible. However, if you can drink a lot of water and can keep it down then why wouldn’t you try this?

Raise the head of your bed: Why not? I have seen no benefit to this personally but raising the head of your bed is so easy it is kind of like why not try it?

Wear Compression Stockings: Why not? I wear these all the time during the winter. During the summer it becomes a tradeoff between how much warmer they will make me and how much they will help with blood pooling. So usually I wear them but if it is 90+ I am probably going to leave them at home.

Don’t stand a lot: Duh. My POTS is severe enough my body doesn’t leave me a choice in this one, but I think for a lot of people I is important to point out it helps.

Get 9 hours of sleep: DO IT. This helps my POTS almost as much as water and salt. It is completely worth it to make sleep a priority for you.

Which ones do you feel like are worth it? Agree/ disagree?