8 Ways Alternative Medicine Hurts Those of Us With Chronic Illnesses

Since the moment I first got sick the suggestions people gave me were unreal. The suggestions began with “just needing to pray harder” and gradually made their way to biofeedback, grounding, crystals, supplements, and more. I honestly am not sure which was worse, but I do know that suggestions and trying alternative medicine have only made a hard life with chronic illness harder.

1. The Patient Gets Blamed When a Treatment Doesn’t Work

When a doctor gives me a medication and it doesn’t work I don’t get blamed for the failure. However, when I try an alternate medicine I nearly always do get blamed for the failure. When it was biofeedback, I wasn’t trying hard enough or practicing enough. When it was acupuncture, I wasn’t trying to relax hard enough. Even with supplements, I just hadn’t waited long enough for the benefits (no matter how long I waited).

It is hard enough to be blamed for a treatment not working when you are trying your best. It is even worse when this attitude gets perpetuated beyond your treatment and into the rest of your life. Sometimes when I tell people the conditions I have I get the response “Well are you trying _____” (Insert any alternative medical treatment). Sometimes it is implied and sometimes it is explicit but the underlying question is always there- why aren’t you trying everything you can? The reality is that people with chronic illnesses don’t owe it to anyone to try treatments not verified by science. The attitude that we aren’t trying hard enough when we don’t try whatever alternative treatment is hurting people. It has kept me from getting the support I need from my friends and family- I was never trying hard enough to get better so in their eyes I didn’t deserve their support.

2. Alternative Medicine Is Dangerous

There are many reasons using treatments only verified by science is so important. One reason is safety of a treatment is verified. The treatments benefits must outway the risks for it to go to market. However, alternative medicine doesn’t need to go through the same thorough screening. People with pre-existing conditions can be the most endangered by this lack of safety.

For example, supplements often aren’t what they say they are. This can cause medications interactions and other problems- especially in people who already aren’t healthy. Chiropracty and acupuncture have their own dangers too. Chiropracty has been linked to strokes and acupuncture to puncturing organs.

I often hear “But it is natural so it is safe” or “I don’t want to put all those drugs in my body- I prefer natural treatment.” What so many people fail to realize is that natural does not mean safe. So many natural things in this world are dangerous- berries, mushrooms, and poison ivy for start. The thing is so many of the medications on the market come from nature and have been improved upon so they are safer and more effective. One example is aspirin, which initially comes from willow bark. There are dangers from the completely natural willow bark and aspirin the same. The difference is aspirin has been tested and put into the safe, same dose in every bottle with dosing specifications included. The risks are assessed and addressed whereas natural products usually only claim they are natural and the public assumes that means safe and doesn’t question the risks of the treatment further.

3. Costs

Alternative medicine profits off people with chronic illnesses. I’m not going to try and argue that “big pharma” doesn’t profit off us being sick as well. However, when we pay for medication we are paying for something that has been proven to be effective at least some of the time. With good insurance, these treatments are likely to be at least partially covered. With alternative med people pay, and they pay big, for something that has not been proven to help with their condition- or any condition at all.

People with chronic illnesses already have to deal with crippling medical debt and are just desperate enough to try anything- any crazy alternative medicine no matter how small the chance there it has of actually helping them. People know this and they benefit off of it. They take advantage of the desperate.

4. It Assumes Laymen Know More Than Doctors

There is a reason we should only trust medical professionals to treat medical conditions. The human body is infinitely complex and so many things can go wrong. Doctors and pharmacists spend a large chunk of their lives in school learning how to treat patients better and minimize risks. But alternative medicine professionals? Anyone can become one. They don’t have to know much about the human body or even anything about the condition they claim they can help with.

5. Patients End up Constantly Chasing Hope All The Time

Having a hope certainly isn’t a bad thing. Having false hope in a treatment that will cost you hundreds, if not thousands, and let you down is a bad thing. A lot of people with incurable, chronic illnesses, if not all, go through a time similar to the bargaining stage of grief. They try anything- no matter how slim of a chance it has of working. Alternative medicine con men know this and they take advantage of it. They promise cures to our chronic conditions. They are in the business of selling false hope.

False hope hurts. Putting 50+ hours into biofeedback that claimed to cure (or hugely improve) my POTS and getting so little out of it. I was crushed by letting myself hope I could get better and then continuing to be sick no matter how hard I tried. The biofeedback technician blamed me; I blamed me. Even worse, my loved ones bought the false claims the biofeedback technician made. And when I wasn’t cured? They blamed me too. It was one of the darkest times of my life. The disappointment consumed me.

6. It Claims To Fix You, Not To Manage Symptoms

Trumped up claims of efficacy are a hallmark of alternative medicine. All the medications from a true doctor I took only claimed to possibly manage the symptoms of my conditions. However, alternative medicine practitioners claimed that they could cure my incurable illness or basically make all the symptoms disappear.

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My conditions are incurable. Cutting out gluten, doing biofeedback nonstop, becoming vegan, yoga, walking, crystals, needles, etc. is not going to make an incurable illness curable. If the cure was truly found actual scientists and medical professionals would be all over it. Alternative medicine conmen making these outlandish claims produces false hope, keeps people from learning to live with their conditions, and makes conditions harder to understand. That leads me to our next point.

7. Pseudo-experts Make Understanding Conditions Harder

Education on conditions is important to people being supportive. When alternative medicine conmen enter the conversation they dilute the available information with false claims rather than facts. This makes the condition more difficult to understand for the patient, medical professionals, and loved ones. Pseudoscience, therefore, makes the lives of patients much more difficult.

For example, I have had doctors tell me that my conditions would be cured by cutting out inflammatory foods. This diet has no evidence to back it up but somehow made it into my doctor’s education on my conditions. Getting suggestions that indicate a fundamental misunderstanding of my condition (that it is incurable) is frustrating and disheartening.

For other examples, you only have to look as far as support groups. There is so much pseudoscience and misinformation that many patients don’t even understand the basics of their condition.

8. Alternative Medicine Simply Does Not Work

There have been many studies into alternative medicine and the results are conclusive- alternative medicine simply does not work. There is a common joke in the science community: What do you call alternative medicine that works? Real medicine.

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So before you consider the next random treatment suggested to you- check it out first. Is there any good evidence that it helps people with your condition? Is it worth the money, the false hope, the risk, or the blame you will likely receive when it fails?

You Don’t Owe It To Anyone To Try Every Treatment

Two weeks ago I went in for an injection in my back. The doctor, instead of being focused on my pain and comfort, decided to use me seeing him as a platform to push alternative medicine on me. By the end of my time with him I was sobbing because I was so frustrated from not being heard. Since then I’ve come to the realization that I don’t owe it to anyone to try a treatment especially one that has not been backed up by science. I will no longer accept health care “professionals” who are judgmental about me not trying hard enough to cure myself.

In the beginning, 8 long years ago, when I first got really sick I tried everything. Every possibility of improvement I jumped on. Every time I got my hopes up and had them crushed again and again. As if that disappointment wasn’t enough, when these things didn’t make me feel all the way better it was always my fault. I must have not been following the diet close enough. I wasn’t practicing hard enough. No one considered the possibility that the treatment, one that hadn’t been verified as successful, just didn’t work.

When alternative medicine gets pushed on patients it is the patients that get hurt. Dealing with having your hopes crushed over and over is hard enough. Dealing both with that and with feelings of inadequacy when you are trying your best is even worse. In real medicine, if someone takes their meds and they don’t work they don’t get blamed for not trying hard enough. When one blood thinner doesn’t work me don’t blame the patient for not trying hard enough to thin their blood; instead the dosage is adjusted or a different medication is used. Real medical professions realize that medications and treatments work differently for different people.

You can bet I will be writing more on the subject, but here are some ridiculous highlights that came from my surgeon:

“Just try an anti inflammatory diet. I did and I feel like I’m 21 again!”

Talking to someone who has been in a ridiculous amount of pain since they were 18 about how you felt 21 is insensitive. Youth does not always mean health.

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“You’ll lose 21 pounds in 21 days.”

What are you an infomercial?!

 

“Inflammation is the cause of all your problems; you just need to cut it out.”

Actually, my genes cause all my problems. No diet will change that. Also, inflammation is not always a bad thing. It helps us heal, it lets us know when there is a problem. Saying an anti-inflammatory diet will fix everything is oversimplifying things. Didn’t you go to medical school?! Or we using “doctor” in a looser sense?

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“Do you eat gluten? You haven’t cut it out. That is your problem.”

I have cut it out. I tried that. Do you think you’re the first person to tell you that? Cutting out gluten is not the solution to everything.

 

“People drive from Kansas just to get this list, but I’m going to give it to you for free.”

Great a list of potentially dangerous supplements and unwarranted “medical” advice. My favorite.

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“Actually there is an entire edition of a journal dedicated to this.”

Yes, there are articles in academic journals about anti-inflammatory diets. They are written by chiropractors and nurses who monetarily profit from people trying anti-inflammatory diets. There is almost no information on any actual science behind it from credible sources. Just because the article is in an academic journal doesn’t mean it is reliable.

 

“You need to get off opiates.”

He said this one to me as I was sobbing in pain in front of him. He is not the doctor that manages them, it was not his business. He also said this after telling me that the nerve in my back was pinched and asking if I had surgery scheduled. When someone dislocates their shoulder they are given opiates. EDSers deal with that pain daily all of their body, but then are judged for needing pain relief. I haven’t slept a good nights sleep in four months due to pain, but yes I’ll stop opiates right away.

 

“You need to try biofeedback.”

I have. I even use some techniques for relaxation, but it didn’t cure me.

 

“You just didn’t see a good one.”

I saw one who is an expert to my condition.

 

“You have to practice more.”

I was practicing even more than they recommended. I tried at it. I really did, but when alternative medicine fails it is always the fault of the patient- not the alternative medicine.

 

“I treat people with EDS all the time.”

He had no understanding of EDS, prescribed me muscle relaxers (contraindicated to EDS), and obviously had no grasp of the condition. I really hope he was lying here and that no one with my condition has had to deal with his ignorance.

 

“Just try what the doctor is recommending.”

This one came from the judgmental nurse on staff. She said this after the doctor was done spewing his pseudoscience and after I had already said that I had done the research and there wasn’t science to back it up AND that I couldn’t eat most of what is in their proposed diet. Chronically ill people don’t deserve to be shamed for not trying things that are not backed by science.
Life with a chronic illness is hard enough. We don’t deserve to be harassed by people for not trying a treatment. I’m not saying that all alternative medicine is evil. For example, massage has helped me wonderfully. What I am saying is that people with chronic illnesses do not deserve to be harassed or judged for not trying hard enough for not trying every treatment under the sun. 

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.

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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/