Misunderstood and Overlooked: hEDS, FND & Autism | Office Hours (Ep 150)

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Dr. Linda Bluestein: [00:00:00] I really find it interesting when the mom is answering the questions over and over and over again, and the child is not really talking very much, and I think it's really, really important that we let the children speak as much as possible and advocate for themselves.

Welcome back every bendy body to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility md. Before we jump into today's episode, I want to let you know about the bendy bulletin available on Substack. I really think you're going to find this a great resource, so please follow me on Substack and leave a comment and let me know what type of articles and newsletters you would like to see there.

Today we're going to be doing another episode where you guys are my guest. I'll be periodically doing these solo episodes, so be sure to submit [00:01:00] your questions on the bendy bodies website, bendy bodies podcast.com. In this episode, I will be covering how to handle suspected Ehlers damo syndromes in young children, low-dose naltrexone, when it is useful, and pros and cons, functional neurologic disorders, and why these are often misdiagnosed in people with EDS and related conditions.

What to do if your diagnosis changes and so much more. As always, this information is for educational purposes only, and it's not a substitute for personalized medical advice. Here we go.

Okay, so the first question is from Sabrina. Sabrina says, hi, Dr. Bluestein. I've been listening for a couple of years now. I came across one of your videos and I've pretty much listened to all of your episodes. I was kind of wanting to make a request being active on online communities. I have noticed that a lot of us with neurologic symptoms and disorders.

Have been diagnosed with functional neurological disorder. I would love to hear [00:02:00] more on the neurological stuff as it is very intriguing to me. I do also want to thank you as you have helped me so much personally and with so many of my doctors. I appreciate what you do and will always recommend your podcast to others.

Zebras. So I love this question because I feel like there's a lot of misunderstanding around functional neurologic disorders. I actually had a patient once who, she actually was in physical therapy school and was studying to become a physical therapist and actually was diagnosed with functional neurologic disorder.

And I will share with you what ended up happening and helping her, um, in just a little bit. So functional neurologic disorder. Let's start with what that is. It is a medical condition in which a person experiences neurologic symptoms such as weakness, movement disorders, sensory issues, or seizures that are real and disabling, but not caused by structural damage or disease in the nervous system.

Key findings of functional neurologic disorder. [00:03:00] The symptoms are real and they arise from problems with how the brain and the body send and receive signals not from visible damage on scans or tests. This is very important because I think there's a lot of misunderstandings both in the medical community and amongst patients that functional neurologic disorders are not real conditions and that people don't experience real symptoms, but they are.

Common symptoms include limb weakness or paralysis, tremors or abnormal movements, non-epileptic seizures, also called dissociative or functional seizures, speech or vision disturbances and numbness or sensory changes. What can cause functional neurologic disorder, physical injury or illness, psychological stress or trauma, and sometimes no clear trigger is found.

Functional neurologic disorder is based on positive clinical signs, not just ruling out other diseases such as inconsistencies in movement or strength that suggest a functional origin. Remember, again, [00:04:00] these are real conditions. I've had so many patients that have been diagnosed with functional neurologic disorders and then kind of were just abandoned, and we still need to treat people that have functional neurologic disorders, but it's important that they get pointed to the right resources.

What we really need with these conditions are a multidisciplinary approach, which often includes neurologists, psychologists, and psychotherapists. Cognitive behavioral therapy and physical therapy can be extremely important. So in short, functional neurologic disorders are genuine disorders of the nervous system function, not structure, and it is important to treat these with the same seriousness and care as any other medical condition regarding that patient.

I mentioned earlier, I want to share a little bit more of her story. So when I was looking through her records before seeing her as a patient, I noticed that there were. Many notes commenting on the fact how she was becoming progressively more weak, so they were sending her for more and more scans, and then there was a big [00:05:00] gap in the notes before I saw her.

I didn't have any records from the past couple of months, so I had a bunch of information that was a few months old and that I didn't have any more information. And I thought based on the fact that I was seeing in the notes that she was getting progressively weaker, I expected her to come into her first appointment in a wheelchair.

She actually came into her first appointment walking, which was very surprising and exciting to me, and I asked her what happened, and she said that she was diagnosed with functional neurologic disorder and was referred to a physical therapist that specializes in functional neurologic disorder. This physical therapist knew precisely how to work with her in a way that was really, really helpful and helped her regain strength quite dramatically.

That physical therapist then went on maternity leave and she was switched to a different physical therapist. The patient told me that when she was switched to the different physical therapist, she actually started to experience a regression of her [00:06:00] symptoms. Fortunately, her original physical therapist came back from maternity leave not too much later, and she was able to make progress again.

So this story really illustrates some very, very important things. Number one, again, functional neurologic disorders are real conditions, and we're gonna into how. People with EDS are often diagnosed incorrectly with functional neurologic disorders. When it's really EDS that's going on and how you can tell the difference.

The other really important point is that it's important if you do have a diagnosis of FND, that you get the proper treatment. Physical therapy is extremely important, but it's also important to work with a physical therapist who has knowledge about FND and knows how to work with these conditions. I. In this person's case, they were very fortunate that they had access to someone like that, and, um, that their treatment was so incredibly successful.

Okay, so let's talk about why EDS, especially the hypermobile type of EDS, is often misdiagnosed as FND. There can be some [00:07:00] overlap of symptoms and so that's why it can be confusing and healthcare professionals often misunderstand. All of these conditions. So first of all, EDS can cause a wide range of symptoms that can include chronic pain, fatigue, dizziness, gastrointestinal issues, and neurologic symptoms such as numbness, tingling, migraines, and even temporary weakness.

I think what can confuse a lot of doctors is the numbness and tingling and weakness that can happen in people with EDS is often, uh, transient and moving in different places of the body. And we're used to thinking of things in dermatomes, so like coming from nerve roots and we're used to thinking of.

Very specific nerve roots, not symptoms that travel from different places, but the same things that predispose somebody to numbness and tangling in one part of the body with EDS are going to predispose you towards numbness and tingling in other parts of the body. So it is very possible to have symptoms that travel like that.

So some of the symptoms that can mimic or [00:08:00] overlap with FND include functional seizures, weakness or paralysis, sensory disturbances and gait abnormalities. Another reason why these are sometimes confused for each other is people with EDS often have normal imaging. So for example, CT scans, MRIs, ultrasounds, et cetera.

And also, we often have normal lab tests. So this is also typical in FND. People with FND usually have normal lab tests and imaging as well. When tests don't show clear structural causes, some clinicians assume that the symptoms are psychological or functional. There's also a huge lack of awareness. Many clinicians, especially those not specializing in connective tissue disorders, are unfamiliar with EDS, or its more subtle signs like joint hypermobility or stretchy skin.

This can lead to a misattribution of symptoms to functional or psychiatric origins. We also know that there's a huge problem with gender bias. EDS predominantly affects [00:09:00] women, and studies show that women are more likely to have their symptoms dismissed or misdiagnosed as psychological, including being labeled as FND Conversion Disorder or Somatic Symptom Disorder.

If you have heard me talk about my story, you may have heard me talk about when I was suffering from very severe sciatica related to a tarlo cyst, and I was seeing a physical medicine and rehabilitation doctor at that time, and my symptoms were getting worse and worse. And I know part of that in hindsight was related to the extreme stress that I was under in my workplace.

I was being basically kind of threatened if I didn't. Recover quickly, I would lose my job. And so this was of course very, very stressful. And I remember going in for one particular appointment and she said, okay, well we'll order one more imaging study. She then put her hand on my knee and she said, we have to accept if this next MRI comes back unchanged that this is all a [00:10:00] somatic functional disorder.

And it was so patronizing and. So embarrassing. I mean, I walked outta that appointment in tears. So upsetting, and I know that so many of you can relate to this. This has happened to so many of us, right? Where people basically tell us that it's all in our head. So as frustrating as that is, I really think that it's so important for all of us to understand that FND, again, getting back to the FND side of things, um, is a real condition.

So don't let doctors or other people try to tell you that it's not a real condition. What else do we see with both of these conditions with both HSD and FND and EDS? So all of these conditions are also associated with anxiety and depression and trauma. So oftentimes when clinicians see these mental health symptoms, they may prematurely conclude that the neurologic or pain symptoms are purely functional or psychosomatic.

[00:11:00] So I know I was experiencing a lot of anxiety at that time when my doctor repeated the scan, so I'm sure that was part of why she was thinking, well, this is just psychosomatic. But I also did have that tarlo cyst on my scans and it kept showing up every time on my scans. But she thought that tarlo cysts were always.

Asymptomatic. I actually ended up going to another doctor, a neurosurgeon in my town who said, no Tarlo cyst might be symptomatic. And that's when I started that whole journey. But up until that time, I was pretty much led to believe that my symptoms were all psychosomatic. I. Which was of course psychologically devastating, made me feel even more anxious, even more depressed, even more traumatized, which of course then made my pain worse.

So that's where we get into these vicious cycles that, uh, so many of us experience and they can be so harmful. I. We also know that EDS often coexist with autonomic dysfunction or conditions like pots, postural orthostatic tachycardia syndrome. POTS can cause fainting, [00:12:00] palpitations, and brain fog symptoms that can be misinterpreted as being part of FND if the clinician is unaware of the autonomic link to connective tissue disorders.

So in summary, FND is a real condition. Oftentimes, people with EDS or HSD can be misdiagnosed with FND, but FND can also occur alongside EDS or HSD. If someone is diagnosed with FND, it's extremely important that they get the proper treatment, which may include CBT may include physical therapy. A a multidisciplinary strategy is really, really important.

I've had patients diagnosed with conversion disorder. I had a patient who was in a wheelchair and had been diagnosed with conversion disorder, and she was basically just left with no resources. They didn't offer her any kind of help whatsoever, and that's really what we need to avoid. We need to make sure that we are evaluating people appropriately, and if we do [00:13:00] suspect that a person does have FND as part of their picture, we need to make sure that we are connecting them with the right resources so that they can improve.

Resolve their symptoms. Okay, so the next question is from Sally. Sally says, hello. I am a family doc, bendy body, and longtime listener to your podcast. I recommend listening to your podcast for all my hypermobile patients, of which I have quite a collection. At this point, I'm reaching out to see if you have any direction to look or if you have done any episodes on EDS in the very young population, my almost 3-year-old had a developmental pediatrics evaluation.

'cause there was some degree of concern for autism and they said that it was highly likely that she has EDS. Not surprising, given my genes. They recommended pursuing aid for her general hypotonia from an EDS perspective, but didn't really have any good direction to go. The geneticist they recommended does not do EDS evaluations.

I have tried many times to refer patients to him, [00:14:00] which is a problem in and of itself, of course. I am one of the more knowledgeable docs on EDS in adults in my rural area, so I suppose I'm going to be needing to lead her care. Her primary care is a much loved family doc colleague who is EDS aware, but not particularly knowledgeable in this area.

We have struggled with finding her PT with minimal success as pediatric PTs are very underserved in our area. Do you have any suggestions of where to take a three-year-old for possible diagnosis and care or any episodes directed towards young pediatrics? I would love to hear your thoughts on care for the pediatric Ed Ser on one of your office hour episodes and thank you for all you do.

Dr. Sally, thank you so much for your question. I will link in the show notes an episode that I think you might find valuable where we talk about autism with uh, one of the pediatric specialists who's been on the podcast diagnosing. Danlos in very young children does involve unique challenges, particularly for hypermobile EDS, the most common subtype because as you know, we [00:15:00] don't have the genetic marker or markers.

So what are some things that we want to be thinking about? Uh, number one, the adult criteria limitations. The 2017 Hypermobile EDS diagnostic criteria were designed for adults and are not suitable for children due to developmental differences in joint mobility symptom pro. Progression and comorbidities.

There is a biologic maturity requirement that prepubescent children cannot be diagnosed with. Hypermobile EDS under the 2023 Pediatric framework developed by the Consortium on EDS and HSD diagnosis is deferred until biologic maturity post puberty or age 18. In terms of the 2023 Pediatric Diagnostic Framework, what's important to know is that children with generalized joint hypermobility are categorized into eight different subtypes.

So first we wanna be looking at musculoskeletal complications. Do they have dislocations, subluxations, chronic pain, tendinopathies. Bursitis, like what kind [00:16:00] of musculoskeletal problems are they having? The second question is, do they have skin or tissue abnormalities? Do they have fragile skin, slow wound healing, abnormal scarring, um, if they had skin breakdown, um, things like that.

Do they have abnormal bleeding and bruising? Also, do they have any comorbidities? Do they have autonomic dysfunction? Do they have gastrointestinal problems? Um, what other symptoms are we seeing? Subtypes under the 2023 criteria range from asymptomatic generalized joint hypermobility to pediatric generalized hypermobility spectrum disorder, which is abbreviated as P-G-H-S-D, which includes systemic symptoms.

But when it comes to hypermobile EDS and HSD, what are some signs that we want to be aware of in young children? So one joint hypermobility. Children might be able to perform unusual party tricks with their joints, such as bending their fingers or elbows backwards, or be described as double jointed. They might have loose [00:17:00] and unstable joints that can dislocate or sublux, especially in the shoulders, hips, and knees.

It's very, very important not to perform these party tricks because even though they might not hurt now, they might hurt in the future. So oftentimes what I will do is I will videotape a child doing their party tricks and then I ask them not to do it anymore unless someone is actually in the circus. We should not be doing circus or party tricks.

Um, we also can see. Chronic pain, persistent pain in joints and muscles. And unfortunately this is sometimes misdiagnosed as quote unquote growing pains. Um, and we know that this pain can affect daily activities, it can affect social interactions, it can affect, confidence can become a huge problem. I. When it comes to delayed motor milestones, we know that some children can take longer to crawl, walk, or stand due to joint instability or muscle weakness.

It's very, very important for the pediatrician to do a proper exam and consider the degree of muscle weakness [00:18:00] because it's very possible that something else is causing that muscle weakness. If they do have one of the subtypes of the alos Danlos syndromes, it's possible that they could have some muscle weakness, but it's of course very important to make sure that we're not overlooking a myopathy or something like that.

Um, again, we can see systemic problems like autonomic dysfunction or gastrointestinal problems. Fatigue is very, very common when I do coaching and seeing patients. I find a lot of children are very, very fatigued. And unfortunately, a lot of doctors are not doing orthostatic or standup vital signs.

Sometimes people call it the NASA lean test. So something that you can do at home that I think might be really beneficial if your child is complaining of dizziness or fatigue, um, is to do a standup test or the NASA lean test. So the equipment you'll need for that is a blood pressure cuff and a pulse oximeter, and something to write down.

The information on. So you're gonna have your child lay down [00:19:00] for at least 10 minutes, and after they've been laying down for 10 minutes, you're gonna check their heart rate and their pulse, and then you're going to write down the time and set a stopwatch. When you have them stand up, then you're gonna keep checking their blood pressure and their pulse every minute or two for the next 10 minutes.

It's very normal for the heart rate to go up initially, but then in most people it will come right back down. Now, if someone does have postural orthostatic Tachycardia syndrome and they're 19 or under, the criteria for diagnosis is an increase of 40 beats per minute. So if your child starts out with a heart rate of let's say 70, and their heart rate goes up to 110 and it stays there consistently for the period of 10 minutes, that would meet the criteria for pots.

Now a lot of doctors. Probably won't diagnose POTS based on your NASA lien test that you did at home. However, if you document all of this data and you bring it into the doctor, you can ask them to please repeat the test in their [00:20:00] office. I would hope that they would be willing to do that. Um, and also another important thing to consider is that being deconditioned can affect this information also.

So say you have a child who's very, very healthy and gets the flu and they've been in bed for like a week because they've been really, really sick with the flu. If you were to do this test at the end of the week when they've been in bed, their heart rate will go up and probably stay up and it will look like they have pots.

But in order to meet the criteria for pots, you have to have these types of symptoms for at least three months. So it needs to be like your baseline state, not your state, after you've had something like the flu and you've been deconditioned. So that's a really, really important um, finding. Okay. Getting back to children and EDS, sorry for the digression.

So, skin abnormalities, we see stretchy, soft, velvety, or fragile skin that may stretch more than normal and bruise easily. We can also see poor wound healing with, um, slow healing and thick stretched out scars. We also see easy bruising and [00:21:00] sometimes frequent nose bleeds. Other things that we can see include flat feet, high narrow palate with dental crowding or dental issues.

Fatigue and poor endurance, often tiring quickly during activities. Difficulty with fine motor skills such as riding or tying shoe laces, poor balancing coordination, sometimes leading to clumsiness or frequent falls, scoliosis or curvature in the spine, abnormal scarring after minor injury and or a family history of EDS or connective tissue disorders.

A very important thing to consider is whether or not genetic testing should be performed. We know that it's very, very useful for the other subtypes of EDS except for the hypermobile type. It can of course help rule out the other subtypes, but if you think that a person has some of the red flags and definitely visit the bendy bodies podcast.com website to see the red flags document, um, that was shared generously by Dr.

Claire Fran Amano. Uh, definitely check out that document for some of the red flags for genetic testing. This is so [00:22:00] important because if a child does have genetic testing and it comes back positive for one of the other subtypes of EDS, we definitely can diagnose that child at any age with any of the other subtypes.

It's just the hypermobile subtype of EDS that we are not supposed to diagnose in prepubescent children. In terms of the clinical evaluation, we wanna perform a physical exam, looking to see if the person does have generalized joint hypermobility. Do they have any swelling in any of their joints, any redness, any warmth.

Um, do we have any concern about like an autoimmune type condition? We also want to review the family history and see, like I said, if there are any red flags. Was there any sudden death in a family member younger than age 40? Um, was there any organ rupture in a relative? Um, things like that. Also, we wanna do imaging as indicated for x-rays and echocardiograms to assess the connective tissue.

And we also want to be thinking about a multidisciplinary approach. It's very possible that you're going to need a rheumatologist, [00:23:00] geneticist, physical therapist, et cetera, and also make sure you're considering all the differential diagnoses. Like I said, is there a primary muscle problem going on? Is that why the person is weak?

Um, do they have one of the more rare subtypes of EDS? Do they have juvenile, rheumatoid arthritis? Like what could be some of the other possibilities? Diagnoses like HSD in children are fluid and reclassification is totally appropriate as symptoms evolve or resolve. Children who have generalized joint hypermobility but don't have any symptoms should be monitored for emerging issues.

What are some concerns and considerations for caregivers? We want to be sure to avoid Overmedicalization if a child is doing relatively well. I don't start them on a bunch of supplements and medications and things like that. I make sure that they understand some of the considerations and limitations.

For example, we wanna be very careful with collision sports. I had a patient the other day who does karate, and I said, I'm really worried about karate [00:24:00] because they do a lot of sparring. So this is something where the person would be at increased risk. Of an injury. So while we don't want to over medicalize, we also want to make sure that we are making very conscious choices about things like skiing or playing soccer, um, other activities that where you might be at increased risk of injury.

On the flip side, it's important not to completely avoid activity and perceive ourselves as being really weak. We wanna focus on our wellbeing, on our strengths, on our goals, and make really good smart choices. We wanna focus on symptom management, physical therapy, joint stabilization. Um, we also wanna focus on things like working on psychologic aspects of EDS and HSD.

We want to optimize any anxiety or depression, and if someone has experienced some trauma, we wanna be sure that we're working on that. I would like to refer you also to the episode with Ashok Gupta. And he has an amazing program called the Gupta Program. I have heard from a lot of people that they have found this program to be very, very helpful [00:25:00] in adults, and it probably would be great for teens as well.

If you have an infant that is showing signs like easy bruising, hypermobility, muscle weakness, et cetera. It's very important to have an early evaluation because you want to make sure that you minimize any risk of developmental delay or organ fragility. We're gonna take a quick break, and when we come back, we're going to talk about how a parent can support a child with EDS at home.

This episode of the Bendy Bodies Podcast is brought to you by EDS guardians, paying it forward in the Aler Danlos syndromes community patient to patient for the common good. I am proud to serve on the inaugural board of Directors for EDS Guardians, a small charity with a big mission and a big heart.

Now seeking donors, volunteers, and partners, patient advocacy and support programs available now. Travel Grants launching in 2025. Learn more Shop for a cause at their swag store and join the revolution at EDS guardians.org. [00:26:00] Thank you so much for listening to Bendy Bodies. We really appreciate your support.

It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms. This helps us reach so many more people and spread the information to everyone. Thank you so much again, and enjoy the rest of the episode.

Welcome back. So, how can parents support a child with EDS at home? So number one, they can help create a safe environment. They can remove tripping hazards such as scatter rugs, frayed carpet edges, and wires, and things like that to prevent falls and injuries. Some children might benefit from having handrails on stairs and in bathrooms for additional support and safety.

You also might wanna consider adaptable chairs and footrests so they can sit with their knees and elbows at a 90 degree angle, which can provide more stability and comfort when they're sitting at a table. A lot of children with EDS and adults as well, we sit with our legs twisted [00:27:00] and contorted, and we like to sit with our legs underneath us and all kinds of other, um, funky positions.

But it can also be helpful to do things like these adaptive chairs and foot wrists. Also sensory tools like Chew or Safe chewing tools. Sensory bins for calming play and sensory regulation can be helpful. You wanna modify activities to meet your child's needs, allowing for breaks and adapting expectations based on their energy and pain levels.

You want your child to maintain as much of a normal life as they possibly can. You want to encourage safe physical activities whenever possible. Choose low impact activities like swimming, which support the joints and allow movement. You wanna make sure to let your child participate in as many sports and age appropriate activities as they can to explore different skills without overexertion.

Prioritize fun and safety over strict adherence to practice schedules and make sure that they can rest as needed. It's extremely important [00:28:00] to support their emotional wellbeing. Make sure you maintain open, honest communication. Listen to your child's experiences and validate their feelings about pain, fatigue, or other symptoms.

At the same time, it's really important to encourage independence and problem solving, but also be ready to step in and provide help as needed. You want to balance conversations about EDS with time spent focusing on your child's interests, personalities, and life outside their diagnosis. It's extremely important that your child have as diverse an identity as possible.

So if they're good at painting, um, if they like to do math, whatever other things that they like to do, you want to make sure that they are incorporating as much fun and normalcy as possible. You want to treat your child as normally as possible. Encouraging participation in family and social activities with appropriate adaptations.

Allow your child to express their feelings about EDS and involve them in decisions about their care and activities. Encourage your child to communicate directly with their [00:29:00] healthcare professionals. I really find it interesting when the mom is answering the questions over and over and over again, and the child is really, you know, as they're getting older, oftentimes the child is not really talking very much, and I think it's really, really important that we let the children speak as much as possible and advocate for themselves.

We also wanna connect with support and resources. Seek out support groups for parents and children with EDS for community advice and advocacy skills. It's really, really important when you're looking at support groups to find ones that are solution focused and not the Misery Olympics. You can also find some really great resources from organizations like the AORs, Dan Los Society, and AORs, Dan Los Support uk.

You also want to monitor and adjust with your child. Keep a journal of your child's sensory and physical needs to help to adapt strategies as they grow and as their symptoms change. You also want to regularly reassess home adaptations and activity choices as your child's abilities and needs evolve.[00:30:00] 

Supporting a child with EDS involves a combination of practical home adaptations, emotional support, fostering independence, and connecting with community resources to help your child thrive. Help your child be as independent as possible while making sure that you are being totally supportive. Next I wanna talk about low-dose naltrexone.

I get lots and lots of questions about low-dose naltrexone. So first of all, what is naltrexone? Naltrexone is an opioid antagonist, so it is an opioid blocker. Naltrexone was originally developed to treat opioid use disorder and alcohol use disorder. Low dose Naltrexone refers to the daily doses of Naltrexone that are approximately one 10th.

The standard dose used for opioid addiction, this is usually around 1.5 to six milligrams per day compared to 50 to a hundred milligrams that is used for addiction treatment. Low-dose Naltrexone is used off-label in this way to manage a variety of conditions, [00:31:00] including chronic pain syndromes like fibromyalgia and complex regional pain syndrome, autoimmune diseases like multiple sclerosis, Crohn's disease, rheumatoid arthritis, and lupus, chronic fatigue syndrome, dysautonomia or postural orthostatic tachycardia syndrome, some cancers, mast cell activation syndrome, and pain associated with the Ehlers Danlos syndromes.

While we don't entirely understand the mechanism of action of low-dose naltrexone, it is thought that part of it is briefly blocking the opioid receptor, which triggers the body to increase production of our own endogenous opioids. These are the opioids that we make inside of our own body, and by making more of our own opioids, we get more pain relief and more of a sense of wellbeing.

We also know that at low dose, instead of binding to the mu opioid receptor, naltrexone favors the toll-like receptor four, which can lead to decreased production of pro-inflammatory cytokines. Through [00:32:00] this way, it modulates the immune system and reduces inflammation. Low-dose naltrexone also modulates the immune system by reducing inflammation, possibly through effects on microglial cells, and the toll-like receptor four, leading to the decreased production of pro-inflammatory cytokines.

We know at higher doses, naltrexone binds to the mu receptor, but at lower doses it favors this toll-like receptor four. Clinical evidence is limited, but is very promising. There have been small studies that have shown benefit in reducing pain and improving symptoms in fibromyalgia, Crohn's disease, and multiple sclerosis.

There's other research that consists of small trials and case series. We definitely need large scale definitive studies. Low-dose Naltrexone at this point remains off-label. One of the advantages of low dose naltrexone is that it is generally very well tolerated. Side effects are uncommon and usually mild, including insomnia, vivid dreams, nausea, diarrhea, and [00:33:00] headache.

Weight loss can also occur with naltrexone, so that's just something to be mindful of. Naltrexone is actually combined with a drug called Bupropion or Wellbutrin in a weight loss drug called contrave. And in that medication, it's a fixed ratio between Bupropion 90 milligrams and Naltrexone eight milligrams.

So for people who are prescribed contrave, this is a higher dose than most people take if they're taking low dose Naltrexone from a compounding pharmacy. I just like to point this out to people that this is used in a weight loss drug, so we want to be mindful of that. Starting at a low dose and gradually increasing can help minimize side effects.

Low-dose Naltrexone is considered safe, non-toxic, and inexpensive with minimal risk of adverse effects. You do have to get low-dose naltrexone from a compounding pharmacy. So what that means is that the compounding pharmacy actually gets the powder and then they make their own tablets or capsules. The advantage of that is you can let the compounding pharmacy know if you have any [00:34:00] reactions to excipients or the quote unquote inactive ingredients in medications.

So if you have a problem with a particular type of capsule, whether it's a gelatin capsule or micro cellulose or something like that, or if you're a reaction to certain fillers, the compounding pharmacy can adjust that for you for something that you're less likely to react to. Cost is also a factor and most people's insurance policies do not cover compounded medications.

Some compounding pharmacies don't deal with insurance at all. So if it's possible that your insurance plan might cover compounded medications, check with your insurance plan before getting your prescription filled because you may need to change to a different pharmacy in order to get that insurance accepted.

I have also had some patients for cost reasons, want to take a quarter of a 50 milligram. Naltrexone tablet. Now, if you do that, you're getting 12.5 milligrams of naltrexone, which is, you know, quite a bit higher than we normally use for low-dose naltrexone. But this is something that I have had [00:35:00] some patients request in order to save money.

What are some of the cautions that we have to exercise with low-dose naltrexone? Low-dose Naltrexone should not be used concurrently with opioid medications because it can block their effects and reduce pain relief from those drugs. We don't know the long-term safety of low-dose naltrexone. However, naltrexone has a long history of safety, and in these low doses, we should not really expect to see very many problems.

Low-dose naltrexone is not FDA approved for these off-label uses and patients who discuss the risks and benefits with their healthcare provider before starting therapy. I did discuss what off-label means and also some more information about compounding pharmacies in more detail in both episodes, 1 24 and 1 38.

Another one of the cons is that you must take it every day. This is not a medication that you take and then you notice an effect right away. I have had some patients that I've prescribed low-dose naltrexone, and they felt better within several days, but sometimes it takes months. I do ask [00:36:00] patients to give it at least a six month trial, and in most cases people do notice at least some benefit.

1. If you are having surgery, you do need to stop the low-dose Naltrexone for at least seven days before your scheduled surgery and resume taking it. Seven days after you are no longer taking opioid pain medication. You do not need to taper off the Naltrexone when you go to restart naltrexone. At least seven days after you stop taking opioids, you may want to restart with the same way you started in the first place, starting with a low dose and then tapering up as tolerated.

Examples of opioid pain medications include Vicodin, hydrocodone, Ultram, or Tramadol, morphine, Percocet, oxycodone, DGES Patch. Well, what about with acute pain? I know some people are very worried about, well, what happens if I'm taking low dose naltrexone, which is an opioid antagonist and I have acute pain?

Opioid pain medication can be used sparingly if needed for severe pain flares. If a pain flare occurs and someone takes an opioid pain medication, [00:37:00] I usually recommend that they do not take their low-dose Naltrexone until that flare has subsided. Some people report taking an isolated single dose of opioid pain medication in the same day as low-dose naltrexone without any problems.

However, low-dose naltrexone may cause withdrawal symptoms if taken when opioid pain medication is still present in the body. I. To minimize the risk of withdrawal symptoms, I usually recommend that my patients do not take Naltrexone until the pain flare has subsided, and they are no longer taking opioid pain medications for acute pain while taking low-dose naltrexone.

It is important to prioritize non-opioid analgesics. Off-label LDN regimens usually do not require increased opioid dosages and mostly depend on patient specific tolerance. Close monitoring and follow-up are essential. I will provide some links where you get more information about low-dose naltrexone and also low-dose naltrexone and taking opioids.

It is highly recommended that people wear a medical information bracelet and complete any medical information that can be accessed from their [00:38:00] phone in an emergency setting if they are taking low-dose naltrexone. This way, the medical team knows that you are on this medication and can act accordingly.

It is also very important to include on your medical information bracelet or in your phone app that you have a diagnosis of EDS or HSD. This way people know to take some precautions when it comes to managing your airway in an emergency, and especially if you have something like upper cervical instability.

I would definitely make sure to list that separately. Our last question is from Jamie. My husband and I are looking at it moving to Colorado, but every time we go I get horrible altitude sickness. I've tried quote the medication and it doesn't help, although steroids seem to help some and I had a very rough time.

I hoped you might have some tips for high altitude. So EDS HSD pots and MCAS all can increase sensitivity to altitude. And some people are just more sensitive than others. I am much more sensitive than my husband, even though I tend to hydrate more than he does. Sometimes I will take acetazolamide or diamox, which is I'm sure the [00:39:00] medication that Jamie was referring to.

And also I sometimes take dexamethasone, which is the steroid most commonly used for high altitude sickness. What are some practical tips for managing high altitude travel? What can you do in preparation? You can ascent gradually in order to allow your body to acclimate. You can consider spending time at an intermediate altitude before ascending higher, or take day trips to higher elevation and return to lower altitudes to sleep.

It's very important to consult with a doctor who is familiar with high altitude before you have any travel, especially if you have preexisting medical conditions during the trip. It's very important to stay hydrated. You wanna make sure that you include electrolytes. In your fluids. You also want to eat smaller, more frequent meals and avoid excessive carbohydrates, which can worsen symptoms of altitude sickness.

You want to avoid alcohol and heavy exercise for at least the first 48 hours. At high altitude. You want to watch for signs of acute mountain sickness, such as headache, nausea, [00:40:00] tiredness, and loss of appetite. Be aware of severe conditions like high altitude, cerebral edema, or hace or high altitude pulmonary edema, hape, which require immediate descent and possibly oxygen therapy.

The most common medication options are acetazolamide or diamox, which is used mostly to prevent altitude sickness. Dexamethasone, which is a steroid, may be prescribed to prevent altitude sickness, but also can be used as a treatment. I've taken both of these. There's another option, which is nonsteroidal anti-inflammatory medications like ibuprofen.

Ibuprofen has been shown in some studies to increase the incidence of altitude sickness by 26%. It works by reducing inflammation and swelling in the brain, which can contribute to altitude sickness symptoms like headache and nausea. It's particularly useful for preventing high altitude headache, which is a common symptom of altitude sickness.

Some of the advantages of ibuprofen are it's readily [00:41:00] accessible, it's widely available over the counter. It's inexpensive and usually well tolerated In terms of the safety profile, ibuprofen has fewer side effects compared to dexamethasone, which is linked to high blood sugar, adrenal suppression, mood changes, and insomnia, or acetazolamide, which can cause nausea, dizziness, fatigue, and frequent urination.

Some of the limitations of ibuprofen are number one, it is inferior to acetazolamide, and number two, symptom masking Ibuprofen may primarily reduce headache and inflammation rather than addressing the underlying acclimatization issues, raising concerns about whether or not it truly prevents altitude sickness or simply mitigates symptoms.

Typical dosing involves 600 milligrams three times a day, always with food, starting a few days or hours before ascent and continuing during the climb. High doses may provide better prevention, but could increase the risk of gastrointestinal or kidney issues. It's very important to make sure to always take [00:42:00] ibuprofen with food and make sure that you are very well hydrated.

Ibuprofen might be a good option for individuals who prefer over the counter solutions or experience mild symptoms like headache at high altitudes. For rapid ascent or individuals at higher risk of severe altitude sickness, acetazolamide or dexamethasone may be more appropriate. So to conclude, ibuprofen is a viable option for mild altitude sickness prevention and treatment, but should not replace acetazolamide.

For those requiring more robust protection against rapid ascent. Make sure that you consult with your doctor, of course, for any medication regarding altitude sickness. I also wanted to share this information because my clinic in Colorado is at altitude. So I have had a number of patients when they come to visit me for appointments who are experiencing a worsening of their symptoms.

Number one, related to the travel. But number two, if they're used to living at sea level and they're now at 5,500 feet or so. Um, also wanna consider using a pulse oximeter when you travel to monitor oxygen levels if [00:43:00] you're at risk for hypoxia due to your medical conditions. Other special considerations for people with EDS or pots high altitude can exacerbate the symptoms of denomi or pots.

People can get worsening of their dizziness, fatigue, pres syncope, orthostatic intolerance, et cetera. Um, very important to maintain your hydration as much as possible and your electrolyte intake. Heat and altitude changes can also trigger flares in people with hypermobile EDS and HSD, so it's important to pace yourself and avoid overexertion, especially in the early phases of going to higher altitude.

Also, make sure that you are prepared for emergencies by knowing the location of nearby medical facilities. Make sure that you carry your necessary medications and a detailed medical history if you have chronic illnesses like EDS or other conditions that could complicate altitude preparation. If symptoms worsen despite these precautions, descend immediately and seek medical care.

High altitude travel can be safe [00:44:00] for people with EDS HSD pots or MCA, but it's important to be well prepared and know the potential risks. And last but not least, I have a quick hypermobility hack for you. So you may or may not be aware that there is a project by the EDS society called the Road to 2026.

So with the road to 2026, they are looking at revising the 2017 Hypermobile EDS diagnostic criteria, which as you may know. Is currently a clinical diagnosis when the 2017 diagnostic criteria were introduced. Of course, there were a lot of questions and a lot of people concerned that this might impact their diagnosis.

Well, we have the same issue coming up with the road to 2026. It is very possible that a lot of us, myself included, may have a change in diagnosis after the road to 2026 is released. So I would really urge you to be thinking about yourself and your diagnoses in [00:45:00] terms of your symptoms. It is very important for all of us not to over identify with our diagnosis and think of ourselves primarily by our diagnosis.

If we do, then we are even more risk of being really, really devastated if the diagnostic criteria change and our diagnosis changes. A diagnosis does not change what you feel in your body. Your symptoms are valid. Your symptoms are real. Diagnostic categories and diagnostic criteria are things that are developed by humans, and these are always changing over time.

And as we develop new information and new studies in medicine, all we really are doing is pattern recognition. But again, your symptoms are real and your symptoms are valid. If you focus on your symptoms and your quality of life and other aspects of yourself, if you focus on your strengths and what you have to give to the world and what you're good at, then if the diagnosis changes, it's [00:46:00] less likely to be really devastating to you.

We'll talk about this more in an upcoming episode because I know that a lot of people are really concerned about this, so I hope you found today's episode helpful. Thank you so much for listening to this week's episode of the Bendy Bodies. With the Hypermobility MD Podcast, you can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast.

This really helps raise awareness about these complex conditions. If you would like to dig deeper, you can meet with me one-on-one. Check out the available options on the services page in my. website@hypermobilitymd.com. You can also find me Dr. Linda Bluestein on Instagram, Facebook, TikTok, Twitter, or LinkedIn At Hypermobility MD you can find human content, my producing team at Human Content Pods on TikTok and Instagram.

You can find full video episodes of every week on YouTube at Bendy Bodies Podcast. To learn about the Bendy Bodies program, disclaimer and ethics policy submission verification, and licensing terms and HIPAA release terms, or to reach out with any questions, please visit [00:47:00] bendy bodies podcast.com. Bodies Podcast is a human content production.

Thank you for being a part of our community, and we'll catch you next time on the Bendy Bodies Podcast.

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