Lower Your EDS Pain | Office Hours (EP 138)

[00:00:00] I think if you have some quick facts, like up to 3 percent of the population may be affected by hypermobile EDS and HSD, which amounts to 225 million people, and that a very large percentage of the people with hypermobile EDS and HSD have gastrointestinal symptoms, fatigue and comorbidities like POTS and mass cell activation syndrome.

If you're armed with information, then you're much more likely to be able to call someone out when either they say something derogatory or offensive. Or something very unkind about these conditions.

Back every bendy body to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility md. Today we are doing another episode where [00:01:00] you are my guest. I'm going to periodically do these episodes, so be sure to submit your questions. You can visit bendybodiespodcast. com and submit your questions there.

In this episode, I'm going to answer questions about whether or not a diagnosis is important, some devices to help with your posture, the quote unquote best pain medications for HSD and HEDS, and some other topics as well. Stick around until the very end so you don't miss any of our special hypermobility hacks.

As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Here we go!

So, first of all, I want to thank everyone who completed the survey we conducted recently. The feedback was extremely helpful, and I'm working to incorporate as many of your suggestions as possible. And I want to congratulate Jennifer Bizarre, who won the free EduCoaching session. Okay, today I'm going to start with A listener question.[00:02:00] 

Hi, I have been listening to the podcast since early 2023 and it has been life changing for me. I am constantly learning about new connections between my hypermobile EDS, mass cell activation syndrome, and neurocardiogenic syncope. Neurocardiogenic syncope, just a little side note, is one of the forms of dysautonomia where people will suddenly lose consciousness.

People often say neurocardiogenic syncope is where people faint and POTS people feel faint. Um, okay. Continuing on with the question, I am able to take the information and word it in a way that my provider or providers can understand with references to evidence that points to why I may need to be worked up.

This is how I was diagnosed with MCAS. The hacks have been off the charts as well. So many aha moments I can't even tell you. I had surgery for nephroptosis in 2003 and again in 2004 and I'm in a urology journal somewhere and no one knew why it was happening because I didn't know I had hypermobile EDS at that time.

Anyway, just [00:03:00] wanted to say a big thank you for all your work you have done and continue to do. This is why you were put here and I know that you are making a huge difference. Okay, so first of all, As I read this, I realized it's not a question. It's, it's more of a comment, but I did want to lead this into a question about what is ptosis in the abdomen.

So nephroptosis is when the kidney drops down into the pelvis when you stand up, but other organs can do this as well. So for example, this can happen with the stomach. The small intestine, the large intestine, or as I just mentioned, the kidneys. So collectively, this is referred to as visceroptosis. Ptosis means sagging, so you can have ptosis of your eyelids.

That's where it's often used, that term, and it's spelled P T O S I S. But people who have EDS or one of the Ehlers Danlos syndromes are probably at increased risk of having ptosis of abdominal organs as well. This has been reported in the literature and is probably vastly under recognized. [00:04:00] Working up something like visceroptosis is very challenging because most imaging studies are done supine, or laying flat, and therefore the organs are going to look like they're in a more normal position.

Also, the symptoms of visceroptosis overlap with other problems, many of which are really, really common with EDS. So some of the symptoms we see with visceroptosis include nausea, vomiting, bloating, abdominal pain, and constipation. This organ prolapse may actually cause visible changes to the abdomen, but of course we can get bloating for other reasons, and it can be difficult to distinguish more regular bloating versus when the organs are actually sagging.

In addition to this, Uh, listener who submitted this comment, I also had a bendy bodies client who had to have surgery for her visceroptosis because it was so severe. So anyway, I wanted to just share a little bit about visceroptosis because I thought that was really interesting and I really appreciated this listener's very kind words.[00:05:00] 

Another piece of feedback was from a male listener. who wanted to point out something that one of my guests recently stated that he felt was untrue. And I totally agree with him. He said that the guest said males are always taken at their word, and he wanted to point out that that's not true. As a male, he has often not been taken at his word.

And I know from many of my male patients that that is common with them as well. And unfortunately, no one is really exempt from being gaslit. He also pointed out that he thinks a really big issue that males face is the whole societal programming and conditioning that tells you, you need to keep going regardless of anything.

Pain makes you stronger, you know, narratives like that. And he says that it was quite a barrier to even himself to realizing how much he was physically hurting and just commanding his body forward. And it wasn't normal. So, I really want to thank this listener for sharing that. It's important to recognize that both sexes have tons of challenges with hypermobile EDS and [00:06:00] HSD, and I will be diving more in future episodes into some of the specific concerns that males tend to face.

Okay, next topic. This is from another listener. Hello, Dr. Blustein. I love the podcast and get so much out of each episode. I especially liked your recent going to college with EDS. Yes, my son has HSD, speaking of males with HSD and HEDS. My son has HSD as well and I appreciated hearing how he can successfully transition into adulthood with his symptoms.

Separately, I'm working on chronic neck and upper back pain. I have decent posture when I'm focusing on my posture, but as soon as I get busy, I lose track. Can you recommend posture devices or braces that give constant feedback when my posture slouches? Do you think something like that can help reset a body's learned positioning?

Yours Wendy. So, first of all, Wendy, thank you so much for submitting this question and for your kind words. I'm going to first point out that none of us can [00:07:00] maintain perfect posture all the time. So it's really important that we get up and move around periodically. You might see recommendations that we should get up every 45 minutes or so and walk around for 15 minutes.

I don't know about other people listening to this, but I personally don't normally do that. I think it's a really good idea. It's really hard to do. Once you kind of get into flow, if you're like me and you have ADHD, you can end up getting into these deep, deep. holes of research. And once you get into it, you can totally lose track of time.

So setting a timer can be really helpful. And even if you just get up for a minute or two minutes, I think that can really make a difference. Get up, walk around, kind of use your muscles a little bit, kind of shake it off. Um, so that's my first tip is to really try to incorporate little bits of movement all throughout your day, because otherwise your postural muscles definitely do fatigue and it benefits them if you get up and move around.

The second thing I would [00:08:00] point out is there are some really great brands out there that have, uh, posture garments that you can wear. Um, a brand that I really like is called Align Med and that's spelled A L I G N and then M E D and it's all one word. Align Med has some really great Posture, uh, bras that have like a crisscross in the back that really helps kind of keep your shoulders back and helps you remember, gives you those tactile cues for your posture.

And they also have posture shirts and they even have some more heavy duty things for people who really need more support for their spine. So please check out the products. We love Paige because I have a link to a line med with a discount code. So I definitely recommend that you check that out. There's also a product.

called back embrace. And this is more like a set of straps that you wear like a backpack. So it can be a little tricky to put it on at first. Um, you put it on literally like you're putting on a backpack and then you reach around and you grab the [00:09:00] straps and you, and you put them underneath, um, your, where your bra would go if you're a woman or in the front of your chest.

And that can really help with your, with your shoulders. Now, what you want. To avoid doing though is having your shoulders pulled back and your neck pulled forward. If you're watching on YouTube, you can see that I'm jutting my head forward as my shoulders are going back. I feel like that's a really common thing that people do is they get their shoulders back and then they stick their neck forward.

You want to avoid that because that's not helpful. You want your head stacked on top of your cervical spine and thoracic spine because that's when it's going to be easiest to support your heavy head. Our heads are very heavy. Um, another product that a lot of people have found helpful is called the body braid.

Um, so you can check that out as well. And there's another product called the upright go. As I mentioned earlier, our postural muscles have to work a lot and they can get fatigued. So definitely getting up and moving around is very [00:10:00] helpful. And I would say that's probably the most important thing. Also important to know that tight muscles.

Can sometimes be because they are weak, so sometimes if you have really, really tight muscles in a certain part of your body, it might seem like those muscles are actually strong, but in reality, those muscles are weak, so they're kind of like always tense, so they're not relaxing and contracting, they're just always maintaining a certain level of tension, so it's important to keep that in mind.

Train those muscles to work on relaxing those muscles and doing some different exercises to relax. For example, like your upper trapezius muscle, because that tends to get really, really tight. If you're watching on YouTube, you can see I'm bringing up my shoulders for those of you who are just listening right now.

So training our core muscles, um, can be really, really helpful as can our pelvic floor. Um, the pelvic floor is really important for maintaining a proper alignment of our whole body. And I recently interviewed my own physical therapist, Dr. Emily [00:11:00] Bohan for bendy bodies. And we will link that episode in the show notes.

So you can check that out as well. If you have Things that you have found helpful for your posture, please let me know in the comments because I'm always looking for other ideas as well. Okay, so on to the next listener question. I am part of a Silicon Valley EDS Facebook group. Fellow EDSers are reporting that a local university medical center is turning them away, saying they are not equipped to take EDS patients.

I have seen this post come up again and again in the last week, people being denied care. This is super scary. Is this legal? Can a medical center turn away patients just because they have EDS? So first of all, I want to point out that it is common practice for especially big medical centers to review charts ahead of time.

Now you can take the optimistic view and say they're looking at charts to determine if they have something to offer and they want to make sure that it's a good fit. I think in the case of [00:12:00] surgical type situations, whether it's Potentially visiting an orthopedic surgeon or a neurosurgeon, they do usually review images and things like that.

And so I think in those cases, that's probably pretty accurate that they are looking to make sure they have something to offer. You could also take a pessimistic view and. think that they're looking to see do you have enough money to pay? Are you going to be able to pay for all of the things they're going to recommend?

Some of these universities do what's called balanced billing. So even if your insurance covers the services, you're responsible for the difference. So I'm not a lawyer, but I do want to point out that this is a very common practice in a clinic setting. Um, and just like a restaurant is not required to serve you in a clinic setting, they are not required to treat you regardless of ability to pay.

Or if they think that they can help. This is different from an emergency room. An emergency room has to treat you because it is an emergency type setting. So they have to treat you [00:13:00] regardless of your ability to pay or if they think that they can help. So back to the clinic setting. Once you have that first encounter, You and the doctor now have a patient doctor relationship and they have certain obligations to you.

You have certain legal rights. This is something that people often are not aware of. So that's why before you're ever seen in the first place, they do screening for certain things to make sure that what you're looking for is something that they can potentially offer. Because once you've established that patient doctor relationship, if they decide that they want to part ways with you, the doctor actually has to fire you.

But they can do that. A doctor can fire you. Um, but they have to follow specific guidelines in order to avoid legal issues such as patient abandonment. Some of the reasons why physicians might terminate a patient relationship include if patients are not compliant with treatment plans. And I would want to point out here that it's really important if you're not able to follow through with your doctor's [00:14:00] recommendations that you explain why.

So if people are not compliant and they explain why, so they didn't have enough money to Pay for the medications or something happened in their life where they weren't able to follow through with the recommendations. I think most all of us are understanding about that. So I think when we talk about patient noncompliance with treatment plans, we're talking about people who over and over and over again do not follow up on the recommendations.

The next thing would be repeated missed appointments, and I think now in some cases it might even be repeated late appointments, um, rude or abusive behavior towards staff. You might have noticed, like I have, that now there are signs in doctors offices that often say, you know, Uh, rude or abusive behavior will not be tolerated, unfortunately, as medical care has declined and become a very production based model.

So appointments have gotten shorter and shorter. There has become more and more [00:15:00] hostility, unfortunately, and it's understandable on the one hand because people are often not getting their needs met. But at the same time, just keep in mind that depending on how badly things turn out, um, yeah. They could fire you.

The doctor could fire you. Um, also non payment for services. They could fire, those are kind of four of the top reasons why a doctor might fire a patient. There are certain things though that a doctor has to take into consideration if they are going to fire you. So first of all, they have to give you written notice.

Um, and they typically have to give you 30 days notice. They have to offer emergency care during that transition period. And they also have to make sure that you have access to your medical records. Physicians also should not terminate patients in high risk situations, such as acute phases of treatment, when no other physician is available, or if the patient belongs to a protected class.

Terminating a patient is always considered a last resort, and both the patient and the doctor should always try to [00:16:00] resolve things before taking that step. Okay, next question is from Susan. Is it worth pursuing an official diagnosis? I saw an orthopedist who did the bite and score with me and told me that I'm hypermobile.

He was somewhat entertained, honestly. He said I could talk to a geneticist if I would like to. I was wondering if that would be worthwhile or not. So, Susan, first of all, I highly recommend that people see a hypermobility physician specialist whenever possible. It is very important to see someone who has the training and time to perform a proper, thorough evaluation.

And in my opinion, that evaluation really is ideally performed in person. There's certain things that you just cannot do over video, such as feeling skin, and it's even hard to see things like scars. Even if you have really good video equipment, I have addressed this topic on a past episode, but I wanted to address it again because my opinion has changed a bit.

We always want to consider the benefits of a [00:17:00] diagnosis versus the potential risks of a diagnosis. And Now, though, I think the benefits very often outweigh the risks. So what are the potential benefits? You might be able to get more referrals to specialists. It's often very validating. I would say probably the validation is probably the biggest benefit of getting a diagnosis.

And it's also possible that you might be able to get more care. For example, you might be able to get more physical therapy visits or something like that. Potential risks. Include the flip side of that, denied care. So unfortunately, I have heard many, many times of patients being refused visits with, for example, a surgeon because they have an EDS diagnosis.

So if it were me and I was calling to schedule an appointment with a new orthopedic surgeon, for example. Personally, I would, if they asked, you know, why do you want to see the surgeon, I would say because I have hip pain. I wouldn't say EDS on the [00:18:00] phone before I even have that first appointment because I know that there are some surgeons who do not want to see patients with EDS because we are higher risk.

I mean, it is true. We are higher risk for post op complications. So while having the diagnosis on the one hand can help you get more referrals and more care, on the other hand, I have been hearing more and more about these situations in which people with an EDS diagnosis are being refused care. Like I was mentioning about the, uh, local, uh, university hospital where they were refusing to see EDS patients.

There's also the stigma, so I'm going to address that more in just a little bit, but unfortunately, as more and more information is being shared about these conditions, there's also more misinformation, so we're getting more and more stigma associated with hypermobile EDS and HSD, unfortunately. The other important consideration is life insurance.

So although [00:19:00] hypermobile EDS is not directly life limiting. It greatly limits health span in many cases, but it does not normally shorten lifespan. A lot of life insurance companies are declining to cover people because of a hypermobile EDS diagnosis. This happened to me a number of years ago. My husband and I were trying to get life insurance and through the normal routes, they would not cover me even though my diagnosis was hypermobile EDS.

So, those are some important things to be aware of. It's also important to know that a common misconception is that geneticists and rheumatologists are the best doctors to assess for hypermobile, EDS, and HSD. Rheumatologists specialize in autoimmune conditions and HSD and HEDS are not autoimmune conditions.

There are some rheumatologists who are very knowledgeable about joint hypermobility and They're more knowledgeable about acquired connective tissue disorders like [00:20:00] lupus. But it's important to realize that just because they're a rheumatologist does not mean that they're going to be knowledgeable about genetic connective tissue disorders.

There are some other good choices to consider like physical medicine and rehabilitation doctors, pain medicine doctors, and sometimes it might be your PCP. There are some internists and family medicine doctors who are becoming very knowledgeable about EDS and related disorders. Ideally, you would even talk to your internist or family medicine doctor about this.

Any physician can make the diagnosis, and many of us order genetic testing when we feel it's indicated. If you have some of the red flags for a more genetically defined type of EDS, or if you have a really complex family history, um, then I recommend seeing a geneticist, because you want to make sure you're getting the correct genetic testing ordered and Interpreting the results is a lot more complicated than most people realize.[00:21:00] 

So I want you to go back and listen to the episode with Dr. Paldeep Atwell, which was episode 112, and the episode with another geneticist, um, Dr. Frank Amano, which was episode 118. I also suggest that you visit bendybodiespodcast. com to see the red flag list that Dr. Frank Amano kindly shared with us. We will also link that in the show notes.

Okay, next listener question. I was diagnosed with hypermobile EDS recently after having symptoms for a very long time. I am a psychiatric nurse practitioner and work with many psychiatrists, two of which were recently talking about EDS. They were saying how it's a diagnosis people are asking to get a lot more frequently since they see it online.

They say they've seen multiple young women saying they have it and actually they have fictitious disorder. They went on to say it's mostly just affecting joints and pain, but these girls had wheelchairs and g tubes for no reason when it's all psychosomatic. Honestly, it [00:22:00] was upsetting to hear that people might think my diagnosis is something I wanted in order to quote, play the sick role.

People hear AGDS. POTS and MCAS and roll their eyes. How do you conceptualize the EDS videos on TikTok going around, the increased number of EDS diagnoses, and physicians attitudes towards these diagnoses? Have you noticed increased stigma around these diagnoses? I would love to know your thoughts. Okay, right now we're going to take a quick break.

I'm going to address this question when we come back. This is a very important question. I've gotten this question from more than one person. I also want to remind you that if you need to take a break, feel free to hit pause, take a break, go lay down, do whatever you need to do, and then listen to the rest whenever it's a good time for you.

We're going to take a break and we'll be right back.

This episode of the Bendy Bodies podcast is brought to you by EDS guardians, paying it forward in the Ehlers Danlos syndromes [00:23:00] 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@edsguardians.org. 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.

Okay. We're back with the Bendy Bodies podcast, and now we're going to address this question about stigma related to diagnosis. Unfortunately, I do see a lot of stigma related to the EDS or HSD [00:24:00] diagnosis. In fact, quite a few years ago, I saw. a post on a physician forum online, and they were referring to fibromyalgia as the F word and EDS as the quote E word.

Um, obviously they were referring to this derogatorily and it's really unfortunate. As I've discussed previously on this podcast as information spreads so does misinformation. Definitely go back and check out episode 68 where I spoke with Dr. Courtney Gensimer and Victoria Daylor. Check out episode 68.

Number 82 where I spoke with Dr. Colin Halverson and episode 86 where I spoke with Dr. Amanda Casile. It is really important to learn as much information as you can so that you can spot information and distinguish it from misinformation. A thought I have for this particular listener is, next time you hear a conversation like that, maybe you can say something like, Did you know that connective tissue disorders can impact every system in the body?[00:25:00] 

And it makes sense if you think about it, since connective tissue is everywhere in the body. You can point them to resources like this podcast and the EDS Society. I think if you have some quick facts, like up to 3 percent of the population may be affected by hypermobile EDS and HSD, which amounts to 225 million people, and that a very large percentage of the people with hypermobile EDS and HSD have gastrointestinal symptoms, fatigue, and comorbidities like POTS and mass cell activation syndrome.

If you're armed with information, then you're much more likely to be able to call someone out when either they say something derogatory or something, um, very unkind about these conditions. Of course, it's easier said than done, saying something like that is really hard, especially if they're your superior at work, but I think if you say it with a more curious way that that can be helpful.

In the case of these psychiatrists, of [00:26:00] course, they have medical training, so they should have learned about connective tissue back in their training, and they should realize that connective tissue is present everywhere in the body and has roles in most everything, not just in Joints and in pain. So I think maybe having that kind of information might be helpful if something like that comes up in the future.

If you support this podcast by sharing it with others, leaving reviews and following the podcast, that also helps spread credible information. I also recently started a newsletter on Substack, so I recommend that you check that out and Potentially print that and share it with people who are talking about things that are just simply not true.

I also highly recommend that you take every opportunity to learn at places like the EDS Society conferences. They offer in person options, but they also offer affordable Online options. I know it's not affordable for everyone, but they do offer scholarships. So definitely check [00:27:00] that out and apply for a scholarship if you can't afford the online option.

I also would love to hear from you. If you have been in a similar situation and you have suggestions for what to say when you hear people saying unkind and cruel things like this, please let me know in the comments. Another question that came up recently, what are the normal levels of testosterone needed to assist these ailments and they're referring to hypermobile EDS and HSD.

So, first of all, we talked about testosterone recently in an episode with Dr. Casperson, an episode with Dr. Goldstein, and also a different solo episode, so we'll link those in the show notes. I want to point out that testosterone therapy is definitely not for everyone, even if you have a hypermobile EDS or HSD diagnosis.

I also want to point out that it's important to check the level at least twice and to check it in the morning before deciding whether or not to try testosterone therapy. In many cases, once you start testosterone therapy, you're kind of committing to it [00:28:00] lifelong, so it is a big decision. There are some potential contraindications that include prostate or breast cancer, obstructive sleep apnea.

If you have a high red blood count, if you've had a history of a myocardial infarction or heart attack, if you've had a history of stroke, if you've had a history of congestive heart failure, or if you have a desire for fertility. Some of the risks include acne, liver damage, enlarged prostates, or need for an increased dose.

Okay, the next question was what are the most helpful pain medications for EDS? So first of all, I want to point out that there are no medications that are FDA approved for hypermobile EDS or HSD. So all treatments are off label. Off label means that the treatment is FDA approved, but it is approved for a different indication or condition.

Doctors are allowed to use medications for conditions other than the ones that they are FDA approved for. And if you think about it, it makes [00:29:00] sense. Once a drug company has gone through the process of getting the drug approved, they're usually not going to go back and get it approved for multiple other conditions, because that's a very expensive and time consuming process.

I wanted to be sure to explain about off label treatments because I think I was a little bit misleading in episode 136 with Dr. Kaufman. So hopefully that clears that up. So there are lots of different things that we can try with hypermobile EDS and HSD, whether we're dealing with pain or other symptoms.

And I often find that if I prescribe a medication, or often supplements, that When the symptoms of pain get better, oftentimes the other symptoms get better as well. And the reverse is also true. If I can treat some of their multisystemic symptoms, oftentimes the pain gets better. So let's talk a little bit about categories of quote unquote pain medications.

I think oftentimes when people say pain medications, they're thinking of just opioids, but there are other [00:30:00] medications that of course for me, I consider for pain as well. The first one is acetaminophen or paracetamol. And in the U. S. we would call that Tylenol if we're going to use the brand name. So that can be helpful for.

pain in some circumstances, and it can be especially helpful if you combine it with an opioid. They can potentiate each other, but for a lot of people, they need something more than just acetaminophen. There are NSAIDs or non steroidal anti inflammatory drugs like ibuprofen or prescription drugs like meloxicam or Mobic or celecoxib, which is Celebrex.

These are helpful for some people, and for certain circumstances, um, they are anti inflammatory, so they can be beneficial, but oftentimes people find that they're not helpful long term. An important consideration with both acetaminophen and non steroidal anti inflammatory drugs, or NSAIDs, is that they can cause medication overuse headache.

So while, ironically, these medications can be [00:31:00] used to treat head pain, if we use them too much, they can actually contribute to head pain. So, sometimes stopping these medications actually can help head pain get better. Antidepressant medications are also sometimes prescribed for persistent pain, and sometimes they can be helpful, but not always.

Opioids have significant side effects and are rarely helpful long term. What I have found most helpful is MCAS directed therapies. If we can work on stabilizing the mast cell, oftentimes we can reduce inflammation and other symptoms. I also discussed this in episode 121, so I recommend that you check that out as well.

I'm going to mention some of the medications here, but I'll go into more of these in a future episode. So the first medication that I find quite effective for treating persistent pain and mass cell activation syndrome is low dose naltrexone. Naltrexone is an opioid antagonist. The lowest dose of naltrexone that we can get from the pharmaceutical company is 50 milligrams.

So when [00:32:00] we use low dose naltrexone, it has to be compounded. And what that means is that the compounding pharmacy gets the medication in powder form and they make their own tablets or capsules. I usually start low dose naltrexone at either 0. 5 milligrams or 1. 5 milligrams. So that's of course much lower than the 50 milligrams that the pharmaceutical company makes.

Low dose naltrexone can be very effective for neuroinflammation or inflammation in the nervous system. It can help with mast cell stabilization, and it can also help with glial cell activation, which is something that happens in the brain and contributes to persistent pain. I started taking low dose naltrexone about eight years ago, and I think that has probably been the most helpful thing for me, and it also seems to be the most helpful thing for most of my patients.

I prescribe low dose naltrexone quite a bit, and very commonly, the dose of LDN tends to be, once it's stabilized, around 4. 5 to 6 milligrams per [00:33:00] day, although some people find it effective at 1. 5 milligrams, and other people are taking 12. 5 milligrams. So there's quite a bit of variability there. The next medication that I often find helpful is ketodafin.

So ketodafin is a first generation antihistamine. So that means that it's an antihistamine that crosses the blood brain barrier. So it can cause sedation. Oftentimes though, once we slowly increase the dose, like we do with low dose naltrexone, people can get used to the medication and the sedation effect does wear off.

It's very interesting, as I prescribe this medication more and more, to see the highly individual nature with Ketotifin. I have patients that are taking four milligrams twice a day or four milligrams three times a day and experiencing no sedation at all, and other people can't get beyond one milligram twice a day without feeling really, really sleepy.

Ketotifin is one of the more anti inflammatory [00:34:00] antihistamines, so it can be really, really effective for persistent pain. The next medication that I find effective for persistent pain, especially abdominal pain, is cromalin. Cromalin is a very old drug. I was prescribed cromalin back when I was a teenager, so obviously that was a long time ago.

Cromalin can be taken orally and possibly can be obtained from a local pharmacy, although lately people are having difficulty getting cromalin. You can get it from a compounding pharmacy. It can be available as a nebulizer where it's inhaled into the lungs. It can be used as a nasal spray, and it can also be used topically.

In general, it tends to work where it's applied, so people who take it For, uh, topical reasons, usually don't notice too many systemic effects, for example. Chromalin is an extremely effective mast cell stabilizer, so it can really help with symptoms of mast cell activation syndrome. Chromalin is generally very safe and [00:35:00] usually well tolerated, although sometimes people need to start low and slowly work up, like I mentioned with ketataphin and low dose naltrexone.

The last medication I want to mention is ketamine. Ketamine is a controlled substance, but I do find ketamine to be quite helpful in patients for emergency type cases. So, you may have been hearing more and more about ketamine. It is a dissociative anesthetic. So, In higher doses, it actually is used intravenously during anesthesia because it's such an effective medication for pain.

So oftentimes, during an anesthetic, we will use ketamine intravenously in order to minimize the amount of opioids that we use for post operative pain. There can be cognitive side effects and those can be quite limiting, but as I mentioned with the other drugs, There's a huge amount of variability in how people respond to ketamine.

Sometimes I prescribe a low dose tablet and somebody says, wow, this is super effective. I [00:36:00] have very few cognitive side effects. They use it sparingly and it works really, really well. Other times people find that the cognitive side effects are Limiting, and so they are really not able to get any benefit from the drug.

You may have heard about ketamine IV therapies or ketamine being used as a nasal spray. So there are other uses of ketamine. It can be used for a lot of things, including persistent pain. It's often used for trauma. It's used for substance use disorder. It's used for depression. And, um, can be quite effective for those indications.

Intravenous ketamine can be quite effective for complex regional pain syndrome. CRPS or complex regional pain syndrome does seem to be more common in people with EDS and mast cell activation syndrome. And we do believe that the mast cell likely plays a role in CRPS. So I hope that's helpful. Those are some of my favorite medications to prescribe for persistent pain.

Okay. [00:37:00] One more quick topic and then I want to quickly go over some of the survey results. I want to briefly correct something that I said on an earlier episode. I made a comment that it's like the Wild West now because you can walk into an IV infusion center and order like you're ordering at McDonald's.

I recently had the opportunity to visit a local Wellness center where they do a variety of therapies, including hyperbaric oxygen, IV therapies. They do red light therapy, sauna therapy, um, and also like compression garments. So they offer quite an array of services. Some of these are considered medical services and others are considered not medical services.

If you are using one of the non medical services, so for example, sauna, cryotherapy, or red light therapy, you can just walk in and you can say, I want this therapy and they'll do it for you. If, however, you want one of the medical services, so hyperbaric oxygen, or if you want IV therapy, you have to be [00:38:00] evaluated by a nurse practitioner first.

That nurse practitioner will review your medical history and determine if there's any laboratory tests that need to be done and they'll determine what intravenous therapies might be appropriate and which ones might be contraindicated. They will share that information with the nurse who is providing those services at that local center.

I also found out that they check vital signs before they do administer any of these medical treatments. All of the medical treatments are administered by an RN with many, many years of experience. So I have to say, I was quite impressed. This definitely was not what I expected and that made me Very happy to know that at least they're doing a lot more due diligence than I thought they were.

Okay, now I want to comment a little bit on some of the survey results, and again, thank you so very much for your feedback. Interestingly, when we asked what role you play, most people did say that they were a patient, 92%. But second most common was being a caregiver, and third most common [00:39:00] was medical professional.

And we had about 20 percent of medical professionals, so that's great. I also want to give a shout out to a person who is working on counseling certifications to be a licensed counselor, and they're focusing on medical trauma. I also want to give a shout out to another person who has been a registered nurse for over nine years, and she said, quote, now I work in an orthopedic surgery center.

I am mentally diagnosing a lot of patients that are obviously hypermobile. I'm actually finding it to be quite common. Somebody else says they're not currently working as a health care professional, but hope to again in the future. There was another person who was a personal trainer and nursing student who also is an ex contortionist and aerial fabric coach looking to be more informed, which is great.

Another person who said they were a friend. And support network to other hypermobile humans. Another person who was a medical librarian. I love that. That's fantastic. Another person who said that they were a professional in public health with a role in training and [00:40:00] advocacy around disability, both for disabled professionals and the public.

And last but not least, there was another person who said that they were a psychologist to a patient who tells me that she has hypermobile EDS or HSD and they're getting educated. So kudos to all of those people who, in many cases, are doing this so that they can better serve the people who need their help.

As you know, we end every episode with a hypermobility hack, so we'll go on to that next. So this hypermobility hack has to do with digestion. So I heard this recently on another podcast and I really wanted to share this information. They talked about how sitting stimulates digestion. Therefore, it is best to eat our meals sitting up whenever possible.

I thought this is really interesting because, of course, if you're laying down, there's other complications like you could aspirate your food if you're laying down, but if you're laying down and somewhat, you know, if you have your head elevated a little bit, of course, then you're less [00:41:00] likely to aspirate your food, but you're not going to have it.

Okay. as good digestion. People who have things like dysautonomia might be trying to eat laying down. If you're laying down for other reasons like dysautonomia or POTS and you have gastroparesis, potentially your symptoms are going to be worsened then if you're eating laying down. So if you possibly can, I think trying to eat sitting up might be a really good idea.

Maybe before you Sit up and try to eat something. Maybe you drink some water, have some electrolytes. If you take a drug like mitadrine that's going to help with your symptoms, maybe you take that before you eat your meals. If you're taking that three times a day, maybe try to time that with your meals so that your symptoms are more optimally managed.

You can kind of experiment with that and see if that helps. Also, chewing stimulates digestion. So those of us that have jaw pain, maybe we're chewing less and maybe that's making it harder for us to digest our food. So [00:42:00] this can be a tricky combination of situations. If we have difficulty sitting because of a variety of reasons, that can contribute to difficulty digesting and absorbing our food and may also contribute to increased levels of inflammation.

We can end up with nutrient deficiencies that worsen the quality of our tissues. So, if at all possible, try sitting up, even if briefly, and chew your food as well as you can. I hope you found today's episode helpful. I love hearing from you, so please message me at bendybodiespodcast. com. Let me know what you would like to hear about in a future episode, and let me know what your questions are.

Thank you so much for listening to this week's episode of the Bendy Bodies with 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. Awareness about these complex conditions.

If you would like to dig deeper, you can meet with me one-on-one. Check out the services page of my [00:43:00] 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.

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