IV Fluids, Surgery, and Supplements | Office Hours

[00:42] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility MD. Today we're doing another episode where you guys are my guest. I will be periodically doing these solo episodes, so be sure to submit your questions. Visit the Bendy Bodies website at bendybodiespodcast.com to submit your questions either as a message or as a voicemail. Also visit the Bendy Bodies website to sign up for the new newsletter we just started on Substack called the Bendy Bulletin.
[01:12] In this episode, I will be answering the following questions: How might the IV fluid shortage impact you? Surgical considerations for POTS and what you should do about your supplements. Can you tell by looking at someone on TV if they have EDS? What if you've been diagnosed with hypermobility disorders? Are you for sure going to get worse? And so much more. Be sure to 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. Let's get started.
[01:49] Okay, we're going to jump in with our listener questions. The first question: should my bendy daughter continue taking dance? She really loves it and is really good at it, but is only 13 and has lots of pain.
[02:03] So first of all, joint hypermobility — meaning that joints have greater than expected range of motion — is both an asset and a liability when it comes to something like dance or gymnastics, rhythmic gymnastics, or other aesthetic sports. Being hypermobile can definitely be an advantage because you can achieve the aesthetic lines and do different things than other people with more typical bodies are not able to do. On the other hand, it can also be a liability if you have a lot of problems with joint instability, where the joints have difficulty staying in proper alignment, and/or you have recurrent injuries like sprains, strains, dislocations, subluxations, etc.
[02:46] But this is also why I focus so much on the dance population. I really love going into dance studios and talking with dancers because so many of them are hypermobile and they're not aware of it, and they might not know the implications. A lot of times when I go in and talk to dancers and ask at the beginning of a talk, "How many of you think you might be hypermobile?" — usually not that many hands go up. But as we start going through things like the Beighton score and some other different questions like the 5-point questionnaire, it turns out oftentimes that more of them are hypermobile than they realized.
[03:20] A lot of them are doing various different circus tricks or party tricks, and usually they're not painful. But the problem is some of those tricks that we do with our bodies — like I used to do a lot of tricks with my hips and put my feet behind my head and all kinds of other crazy things — oftentimes they don't hurt until they start hurting. And once they start hurting, it's really hard to get it to stop hurting. So that's why it's really important for people to be aware of joint hypermobility and the possible implications well before they actually start running into problems.
[03:53] When it comes to this specific person's question, of course I don't know anything more about their daughter, so I can't really speak to her very specific situation. But what I can say is that being active and staying strong are very important things for optimizing your health — whether you have one of the Ehlers-Danlos syndromes, hypermobility spectrum disorders, or another reason why you might have joint hypermobility. There are so many undiagnosed people in areas like dance that it is very important to be aware of these conditions and stay as active as you can. But just being hypermobile by itself does not mean that you should not dance. In fact, I think it's probably a good thing to do something like dance so that you can be strong — just make sure that you're not leaning too much on your hypermobility and that you are using it correctly.
[04:46] The next question: how will the IV fluid shortage affect people with the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and POTS?
[04:55] So Hurricane Helene destroyed a Baxter facility that produces 60% of the United States supply of intravenous fluids. Intravenous fluids are severely restricted, and actually some hospitals canceled elective surgeries. That's also really problematic because surgeries are a key revenue stream for hospitals.
[05:18] There are implications when it comes to surgery, and there are implications when it comes to areas outside of surgery. If you are getting IV fluids regularly, it may be harder to get them. So make sure you get in touch with your local IV fluid supplier and see how this shortage has impacted them and when they think the supply will be back to normal.
[05:35] When it comes to surgery, you may get less fluid than you would have in other situations. For example, I had a family member who had surgery recently — not a big surgery, but it was still a surgery under general anesthesia. In my over 20 years of practicing as an anesthesiologist in the operating room, I always, always, always, for a normal healthy person, would have spiked a 1-liter bag of lactated Ringer's for this surgery. Instead, this person was spiked — meaning you put the little spike into the bag — with a 500 mL bag as their first bag, and that's all they got for the surgery. I never saw that in over 20 years of practicing anesthesia. I never saw someone get that little amount of fluid for this type of surgery.
[06:30] So it's really important to be aware of this shortage and what you can do. The first thing I want to talk about is why you have to be NPO in the first place — why you're not allowed to eat or drink anything after midnight. We want your stomach to be empty when you go to sleep so that you don't aspirate things from your stomach, have it go up into the back of your throat and into your lungs, and cause a pneumonia.
[06:55] We often tell people not to eat or drink anything after midnight because that's the most clear-cut, distinct way of presenting that information. If we tell them, "Well, you can have clear liquids up until 2 hours beforehand," they might misinterpret that and think, for example, that orange juice is a clear liquid — and it's not. So oftentimes surgeons give more strict advice when it comes to what patients can eat or drink before surgery, just because they want to err on the side of caution.
[07:25] But now that we have this IV fluid shortage, you want to go into surgery well hydrated, and you want to find out very specifically what you can and cannot have before surgery. The current ASA guidelines — or the American Society of Anesthesiologists guidelines for healthy people for elective surgery — say that you can have clear liquids up to 2 hours before the surgery. What counts as a clear liquid? Black coffee and anything that you can read a newspaper through. So water would count, apple juice, those kinds of things — but orange juice would not count. Breast milk is allowed up to 4 hours before the surgery. You can have infant formula, non-human milk, or a light meal 6 hours before surgery. And up to 8 hours before surgery, fried foods, fatty foods, or meat.
[08:14] These are the guidelines for healthy people having elective surgery, and there are definitely exceptions. Some exceptions when longer NPO times are required include pregnancy, gastroesophageal reflux or hiatal hernia, gastroparesis — which is when things take longer to clear through the stomach — obesity, having a feeding tube in place, or a history of aspiration.
[08:41] So you want to go into surgery as hydrated as you possibly can, especially if you do have any chronic medical problems — especially if you have something like POTS, postural orthostatic tachycardia syndrome, or mast cell activation syndrome. Also, if you go into surgery as hydrated as possible, it makes putting an IV in easier.
[09:01] Well, what if you're having emergent or urgent surgery? If your surgery is truly emergent, of course we're going to do surgery regardless — that's a life-and-death situation. If it's urgent but your surgery won't be happening for many hours yet, definitely ask your surgeon if you could have some clear liquids because of the IV fluid shortage.
[09:25] Someone else asked if there was a standard recommended amount of IV fluids that you could have prior to a major operation for those with POTS. I would say that this varies a lot. Before the IV fluid shortage, I probably would have given most people 1 or 2 liters of fluid before their surgery if they have known POTS. However, it also depends on the person's size, the severity of their POTS, the number of different medications that they're taking for their POTS, the planned surgery and the fluid shifts, and other medical problems. So there's no one-size-fits-all.
[10:01] There are some more major surgeries that don't involve a lot of what we call fluid shifts, and others that do involve a lot of fluid shifts. For example, if you're having abdominal surgery, you lose a lot more fluid through the incision, and so you would need a lot more IV fluid than someone who's having a major surgery that is not an open abdominal surgery.
[10:24] What are some other surgical considerations with POTS? A lot of the medications that people take for POTS — postural orthostatic tachycardia syndrome — affect the blood pressure, heart rate, and other vital functions of the body. So it's very important to discuss with your surgeon and your anesthesia team which of those medications you should be taking right up until the time of the surgery, including perhaps the morning of the surgery, and which medications should be weaned off or stopped before the surgery.
[10:52] People who have POTS might be at higher risk of post-op nausea and vomiting, especially if they have any of these risk factors: a history of prior post-op nausea and vomiting, a history of motion sickness, being female, a history of gastroparesis, a history of upper cervical instability, mast cell activation syndrome, taking or receiving opioids for the surgery, or a centrally mediated reason for having nausea and vomiting — such as a Chiari malformation, low or high intracranial pressure, or a CSF leak.
[11:32] Another question I received: I'm having upcoming surgery and I'm taking quite a few supplements. My surgeon tells me I should stop all of the supplements, but I'm wondering what I should do.
[11:44] This is quite common — surgeons will tell you to stop all of the supplements, and I completely understand their reasoning. Because there are so many combination products nowadays and so many different things that people are taking, it's much easier to give a blanket recommendation to stop everything than to go through the list one by one and determine what you need to stop. This also reduces the risk of an error if you forgot to include something on your supplement list, which is of course quite common.
[12:11] Which supplements you need to stop, though, depends also on the type of surgery you're having and your medical problems. I'm going to name some specific supplements that can definitely cause problems, such as increased risk of bleeding, heart arrhythmias, blood pressure problems, etc. There are some, however, that are less risky to continue taking.
[12:34] For example, I had minor surgery last year, and when I had this minor surgery, I did continue taking my magnesium supplement, my vitamin B supplement, and my vitamin D supplement. I did stop my fish oil and a number of the other supplements I'm going to be listing in a minute.
[12:53] If your surgeon tells you to stop all of your supplements and you're concerned about this, be sure to discuss with them your very specific concerns. For me, I was very concerned about stopping my magnesium and my B vitamin because both of those things help me tremendously with head pain. If I miss even one dose of those supplements, oftentimes my head pain comes back. If I take those supplements, my head feels quite good. So I did discuss that with my surgeon and let them know that I really wanted to take those supplements before the surgery, and they were okay with that. Just don't do anything without discussing it with your surgeon, and make sure they understand your reasoning for wanting to continue certain specific supplements.
[13:38] What are the supplements that you definitely should stop taking before surgery? The first group all begin with the letter G — so we think of these as the 4 G's. They are ginger, garlic, ginkgo, and ginseng. These can cause various problems. All of them cause problems with blood clotting, but some of them also cause problems with arrhythmias or abnormal heartbeats. They can also affect blood pressure and blood sugar. In general, they should be stopped around 1 to 2 weeks before surgery.
[14:11] There are a number of other things that do increase bleeding risk. There are 5 of them I want you to remember in particular, and these should also be stopped before surgery: vitamin E, fish oil, CoQ10, turmeric, and CBD oil. These can increase bleeding risk and so most commonly are stopped about a week or so before surgery.
[14:35] Some other things that can impact surgery and anesthesia include vitamin C, which should often be avoided about 24 hours before surgery because it can affect the effectiveness of the anesthetic. Also echinacea — echinacea is something that can be used to boost the immune system, but it can also harm the liver, so you want to exercise caution with that. Ephedra is an herbal appetite suppressant that can cause high blood pressure and arrhythmias during surgery. Ephedra is quite dangerous, and I believe it is actually very hard, if not impossible, to get anymore — but if you are taking it, it should definitely be stopped before surgery. Kava is another supplement that is often used to relieve anxiety and can affect the effects of anesthesia, so you should stop that before surgery. St. John's wort is an herb used for depression and anxiety, but it can interfere with anesthesia medicines and prolong their effects, and therefore should be stopped before surgery. And last but not least is valerian root, which is used as a sleep aid and also for anxiety, but it can also interfere with anesthesia medications and prolong their effects.
[15:50] So to summarize, there are a variety of things that we should be stopping before surgery. Very specifically, they are the 4 G's: ginger, garlic, ginkgo, and ginseng. Five other things that increase bleeding risk: vitamin E, fish oil, CoQ10, turmeric, and CBD oil. Also, we should be stopping vitamin C, echinacea, ephedra, kava, St. John's wort, and valerian.
[16:16] All right, the next question: how should I prepare for the postoperative period?
[16:21] So first of all, you want to be thinking about pain control after the surgery. We have made such a major swing in the United States — we've gone from a complete extreme of some opioid overprescribing to surgeons being incredibly stingy when it comes to opioids postoperatively. Definitely find out from your surgeon what you will be receiving for the postoperative period when it comes to pain relief.
[16:42] You may not need opioids at all, which is great — that's the best way to go if you can. But if you do need something, you want to find out in advance who you will be contacting for problems, and also whether they are available 24/7 and will be able to electronically submit a prescription to your pharmacy, because that is the only way that opioids can be prescribed.
[17:10] I would also specifically ask the surgeon in advance what you should have on hand at home. I find that a lot of surgeons do not really adequately prepare their patients in this regard. You might want to have things on hand like acetaminophen — otherwise known as Tylenol — or nonsteroidal anti-inflammatory drugs. Definitely find out from your surgeon when you can resume taking these, if at all. That would be things like ibuprofen or Aleve, naproxen. This also includes prescription anti-inflammatory drugs like meloxicam and Celebrex.
[17:42] Constipation is extremely common after surgery, so it can be helpful to be really proactive about this. The way that you can be proactive is to make sure that you are taking in a generous amount of fluids after surgery — that will help keep your bowels moving. You also want to make sure that you are walking as much as possible around your house, as that will also keep your bowels moving. And you want to find out ahead of time if there are some things you should have on hand to help stimulate your bowels, like Dulcolax or Colace.
[18:04] You also want to find out ahead of time if you should be purchasing some products to help with icing the area. There are some things you can purchase online that are specific to a body part — such as a knee or an ankle — that are very helpful for icing and don't require you to keep going to the freezer every 30 minutes. Those you would definitely want to purchase well in advance. There are also some props you might want to purchase to help you elevate the part of the body that you had surgery on. And you also want to find out if there are any other as-needed medications that might be beneficial for you.
[18:48] If you are prone to nausea and vomiting, I would suggest asking your surgeon for a prescription for something to treat nausea and vomiting after the surgery. It's better to get those prescriptions in advance whenever possible, because that way you can fill the prescriptions before your surgery.
[19:09] Also, talk to your surgeon about potential mobility aids that might be beneficial for you. Sometimes it would be helpful to have a wheelchair for a period of time, a scooter, a walker, a cane, or crutches. In the case of crutches, with people that have EDS and related conditions, oftentimes we do better with something like smart crutches or forearm crutches, where we're putting more weight on the forearm rather than having so much weight on our wrists, elbows, and shoulders. So definitely discuss those things with your surgeon ahead of time.
[19:39] Find out how your medications will be handled after the surgery if you happen to need something unexpected, and find out what you should have at home.
[21:43] Next, let's talk about the phrase "joint hypermobility" and also whether or not you can tell by looking at someone if they have EDS. Someone recently said that we should gatekeep joint hypermobility. Well, I agree that there's a lot of misunderstanding around that term. Joint hypermobility is a trait and can be completely innocent. There are basically 3 groups of people with joint hypermobility: the group with joint hypermobility that do not have symptoms and won't ever develop symptoms; the people with joint hypermobility that don't have symptoms now but will develop them in the future; and lastly, the people with symptomatic joint hypermobility — they already have symptoms that are likely attributable to their hypermobility.
[22:29] Some of those people, but not all of them, will have EDS or Ehlers-Danlos syndrome. The Ehlers-Danlos syndromes are the most common type of hereditary disorder of connective tissue, and of the types of Ehlers-Danlos syndrome, the hypermobile type is by far the most common.
[22:48] During the Olympics, I noticed a number of people commenting online that various athletes had EDS. I saw a lot of people saying, for example, that Simone Biles has EDS. Now, maybe she's released somewhere that she has this diagnosis and I haven't seen it, but I got the impression that people were labeling various different athletes as having EDS based on what they were watching on TV. I believe that this practice is dangerous for a number of reasons.
[23:17] Yes, you can observe joint hypermobility when it's — especially when it's really extreme, like in rhythmic gymnasts. But ideally, when you are assessing someone's joint range of motion, you're using tools like the goniometer, which is that device that looks like a ruler and measures the various different angles of the joints. You have the proper training — like you're either a physical therapist, a doctor, or a nurse practitioner who is trained to measure angles of joints. And you also have the data you need in order to make this assessment.
[23:48] So while you might be able to tell watching someone on TV if they possibly have joint hypermobility, it's probably only the most extreme cases where you're going to be able to make that observation. And also, you're not necessarily going to be able to determine how many joints are hypermobile. There were lots and lots of gymnasts in the Paris Olympics that had extremely hyperextended elbows, for example. So while you might be able to say that they have hyperextended elbows, you don't necessarily know about other joints in their body.
We know that there are 4 types of joint hypermobility. There's the localized type, which means that you have like 2 or 3 joints that are hypermobile. There's the peripheral type, which means that you have joint hypermobility in your hands and your feet. There's the generalized type of joint hypermobility, which means that you have a number of joints that are hypermobile. And then there's historical joint hypermobility, where you were hypermobile in the past but you're not anymore.
[24:49] When you're looking at someone and you identify, "Oh, I think they have some joints that are hypermobile," keep in mind that you don't know anything about the other two components of EDS. The three important core features of EDS are joint hypermobility, changes in the skin such as skin hyperextensibility or abnormal scarring, and weak tissues. So unless you happen to know something about that person's medical history or something about that person's skin, these are not things you would be able to identify while watching them on television.
If we go around making comments that this person has EDS and that person has EDS, what happens is we start to dilute the term and the diagnostic implications. I feel like there are a lot of doctors that are becoming more aware of EDS, but we don't want to have this term overused and used inappropriately in casual conversation, because that makes it harder for people to actually determine accurate and credible facts about EDS and related conditions.
[25:56] There's a saying in the pulmonary medicine and anesthesia world: all that wheezes is not asthma. And I would say the same thing about hypermobility and EDS — all that is hypermobile is not EDS.
[26:03] The next question I'm going to address is from a follower on social media. This person said: I have been diagnosed with benign joint hypermobility syndrome. I am going to get worse — yes or no?
[26:23] So this person is asking for a prognosis, and I get asked this a lot. The first thing I want to say is that benign joint hypermobility syndrome is an outdated term. Now, if somebody labeled you with having benign joint hypermobility syndrome prior to 2017, that term was in use at that time — so that would have very different implications than if somebody labeled you with it in 2024, for example. There are definite implications in the fact that this term was used in the first place. I would want to know how familiar this person is with these conditions and what they were basing this diagnosis on.
[27:05] It's also very hard to tell someone's prognosis, and it's impossible to tell based on two sentences. If you think about what a physician does when they are evaluating a patient, they are going to go through some subjective and objective criteria. First, they're going to ask you what your chief concern is. Then they will ask you the history of present illness, which is basically the time course that led you into the present moment and the concerns you have right now. They will also ask you your medical and surgical history, your family history, your social history, your current medications, supplements, and allergies. They may also ask you about the treatments that have failed in the past. And they will also look at objective data such as labs and imaging.
[27:55] Of course, based on this person's two-sentence question, we have no idea where they are right now, no idea what problems they're currently dealing with, and no idea what things have been tried in the past. There's a huge variation in people diagnosed with benign joint hypermobility syndrome, joint hypermobility syndrome, hypermobile EDS, or HSD — even if somebody has the same three diagnoses.
[28:22] Let's actually pick 10 people. I'm going to picture 10 people from my practice that have been diagnosed with the triad — so they've been diagnosed with hypermobile EDS, they've been diagnosed with POTS or postural orthostatic tachycardia syndrome, and they've been diagnosed with MCAS or mast cell activation syndrome. I can guarantee you that each of those 10 people, while they do have some overlap, are very distinctly different from each other.
[28:47] Once I meet with somebody one-on-one and do a thorough intake, I can give them so much more information about what their prognosis is and what I think we can do to help them feel better. When it comes to people that are commenting online, of course I have no idea what their situation is — so it's kind of like what we say in computer science: junk in, junk out. If there's no good data coming in, there's no good data coming out. If, on the other hand, we have a detailed intake, then we can provide much more accurate information.
[29:17] So it is very hard to comment on someone's prognosis, especially with no information. There are also a lot of other really important indicators such as financial constraints and access to treatments. But if we look at my treatment method — MENSPMMS — for a lot of these variables, there are different ways we can approach it. We can think about what is the coach option, the business class option, and the first class option. If you're flying on an airplane and you have lots of money, you can fly in first class; most people are flying in coach.
[29:53] For example, if you think about the first letter of my acronym, which is movement, there are ways to approach this in the coach, business class, or first class method. The coach method would be going for walks or moving your body more. Listening to this podcast, which is free, will hopefully give you some ideas for getting your body moving more. You can do things even while still lying in bed, for example, and there are so many free videos online and a lot of different places where you can get great information. There's also the business class option, which would be online group programs — more expensive than the free option but less expensive than the one-on-one option of working with, for example, a physical therapist, an athletic trainer, or a Pilates instructor.
[30:44] When it comes to sleep — the fourth letter of the acronym — we can also think about this with the coach, business class, and first class options. Meditation is something that we can do for free. Apps are pretty inexpensive, and that would be the business class option. And the first class option would be working with a sleep medicine doctor.
[30:59] The fifth letter of the acronym stands for psychosocial. What are some things we can look at there? The coach option would be, for example, support groups — those can be very helpful, especially when used in a manner that is solution-focused. Something like apps or group programs would be the business class options. And the first class options would be working with somebody one-on-one, like a psychologist or a counselor.
[31:34] I also want to point out the difference between medical information and medical advice. I didn't really understand this before I started hosting a podcast and doing a lot of presentations. I would see people on social media or in presentations say, "This is medical information and not advice," and I was like, what does that mean? Why is that important? Advice is specific to you. Your doctor says to you, "You should do blank." This means that they've evaluated you, they've made a diagnosis, and they've prescribed a treatment plan. Information — like this podcast — is more general. It might apply to you, and it also might not apply to you. So right now, I am giving you information as a doctor, but not as your doctor.
[32:19] The last question that I want to cover is: how can I use support groups effectively?
[32:24] Sometimes support groups turn into the misery Olympics. A really strong support group leader will help transition the group from the misery Olympics into getting more solution-focused. They will set boundaries for the group and can really help the group become a place where you can share resources and discuss common problems. They are also very in tune with people who are trying to give medical advice.
[32:49] If you are in a support group and you want to share — for example, about the fact that you're taking vitamin C — the way you should phrase this is, "I find taking vitamin C helpful," not, "You should take vitamin C," because now you're sharing your own personal experience and not giving someone else advice. You also want to be aware of people that are interpreting each other's information. Sometimes people will interpret each other's labs or imaging. As I mentioned earlier about the process we go through when doing a history and physical, this person is not doing a history, they're not doing a physical exam, they're not taking any kind of detailed information like that. So even if they do know something about interpreting labs, they are often lacking the training, and so they may possibly be leading you astray.
[33:35] So I hope you found this information helpful. To be honest, these solo episodes have been quite difficult for me. I love talking with other people, and it's such a different experience when we're having a conversation — whether I'm the guest or the host, it's so much easier for me. But I also want to give you answers to your frequently asked questions. So please send me your feedback. Let me know what you're finding helpful about these solo episodes and what you think I can do differently to make them more helpful for you.
[34:10] Thank you so much for listening to this week's episode of the Bendy Bodies with the Hypermobility MD Podcast. We need your help spreading the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This really helps raise awareness about these complex and so frequently missed conditions.
[34:29] If you would like to dig deeper, you can meet with me one-on-one. Please check out the available options on the services page of my website at hypermobilitymd.com. You can find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn @HypermobilityMD. You can find Human Content, my producing team, @humancontentpods on TikTok and Instagram. You can find full video episodes up each week on YouTube at Bendy Bodies Podcast.
[34:58] 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 bendybodiespodcast.com. Bendy 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.