What’s Behind the Rise in Chemical Sensitivity? | Office Hours

[00:24] Dr. Linda Bluestein: I hurt myself doing such small things. Getting up off the sofa and pushing my hand down on the sofa in order to stand up and I dislocated a finger. I would do very, very small things and injure myself so easily. Once I learned about kinesiophobia, though, it really helped me to realize that we need to move. We just need to learn how to move in a safe way.
[01:03] Welcome back 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 guests. I will be periodically doing these solo episodes. So be sure to visit bendybodiespodcast.com to submit your questions. While you're at it, be sure to sign up for the Bendy Bulletin so you can stay in the loop on all topics — joint hypermobility, EDS, HSD, and MCAS.
I want to also thank you so much for all the great positive feedback about the solo shows. And I wanted to mention something. I talk about my husband a lot and my producing team, Human Content, thinks it would be fun to have him on this show. This show is for you, so I want it to be what you want. Let me know if you want to see an episode with my husband, who is a urologist, in it.
[01:49] In this episode, I'm going to cover pain management while waiting for surgery, more information about the medication cromolyn, stigma and EDS, eye problems with EDS, preparing for appointments with complex illness, and so much more. As always, this information is for educational purposes only and is not a substitute for personalized medical advice. Here we go.
[02:14] Thank you so much for all the wonderful reviews, and I want to read one from Bending My Brain the Right Way. Bending My Brain says: having to navigate a new diagnosis of EDS in the UK NHS is pretty diabolical as they don't recognize it well enough yet. I'm glad for the services provided for the symptoms, but as the clinicians are not clued up yet, they can't educate me as someone who has it. Bendy Bodies fills that void. It provides professional advice at multiple levels, ensuring it's technical for practitioners to learn how best to navigate this condition for and with their patients, with plenty of signposting for further info and resources. However, you also provide evidence-based comprehensive information for those with the condition in layman's terms, not condescending to them, but giving them an understanding of their bodies in terminology that makes sense to everyone. You step over that academic and professional pomposity that so many have to do what was most meant to — to help those who need it. Excellent podcast, fantastic presenter, amazing resources for the likes of me. Floating in a sea of chronic illness, I now understand a little better how to navigate. Thank you so very much.
[03:19] I really appreciate that very kind review, and thank you to everyone who has written a review. I want to quickly share for those that are watching on YouTube a book that I shared a while back. I interviewed the author, Dr. Heather Tick, and I thought I was recording video during that episode, but unfortunately I wasn't. So if you're watching on YouTube, I'm showing you the book that I shared during that episode. It's called Holistic Pain Relief, and we link the book in the show notes so that you can check that out.
[03:54] Okay. The first question that we are going to cover is from Bethany. Bethany says: another suggestion for the podcast — we need an interview with an EDS-experienced eye doctor. Here's my recent experience. I'm having one of those days where I'm tired of being abnormal. I bet a lot of you can relate to that.
[04:12] She continues: January, I got a stye. Couldn't see my regular doctor as he was booking out over two weeks and they didn't want me to wait that long. So they sent me to another practice. I didn't care for this doctor. He didn't listen. He gave me eye ointment that caused an allergic reaction due to the inactive ingredients. I switched to drops, did that for over a month, and the swelling slowly got better, but the spot never went away. This past month, I noticed the vision in that eye getting worse. I couldn't read a book anymore. Made an appointment with my eye doctor even though he booked out. My vision had dramatically changed. The knot there is now scar tissue. And all of the pressure from the stye and now scar presses on the cornea, reducing vision. And he said that the cornea is connective tissue — so go figure. Now it's a matter of wait and see if the vision rebounds or stays decreased. I'm also using hot compresses and massage to see if the scar tissue will go down. And if it won't go down, maybe they'll do a light laser that he said comes with who knows what risks to my wonky body.
[05:13] And all that to say, part of the problem is that the first doctor she saw, in her opinion, should have given her oral antibiotics. Topical isn't enough, and he should have manually unclogged the eye oil ducts in the office, which they did that day. So now she waits. She knew that styes could cause scar tissue, and she knew she needed oral antibiotics in the beginning. So she might have been able to avoid those complications from the scar tissue.
[05:39] Thank you so much for this question, Bethany. And I also wanted to point out that I have lots of eye problems. I have punctal plugs in both of my eyes because I have extremely dry eye. I've also had an ulcer on my cornea, and I recently had an eye infection, and I really found it very challenging to get in to see an eye doctor when I really needed one. Fortunately, my regular optometrist was able to get me in, but if I ever do need something surgical, I'm not really sure where I'm going to go, because with my Blue Cross Anthem Pathways insurance policy, I could not find any ophthalmologist that was covered in my area. So if you're listening, if you're an ophthalmologist and you're in the Denver area and you cover Anthem Pathways, please reach out to me, because I want to have that option in advance in case I have an eye emergency. We know that does happen to people with EDS.
[06:33] Okay. So let's talk a little bit about eye problems that can happen with EDS. EDS is obviously a connective tissue disorder that affects the extracellular matrix, and the extracellular matrix is very important for the structural integrity of the eyes. There are eye-related symptoms that can occur across different types of EDS, but it's often something that's really overlooked.
[06:56] Some common eye problems with EDS include dry eye, as I mentioned. You can get a burning sensation, excessive tearing — which is reflex tearing — and difficulty focusing due to lacrimal gland dysfunction or autonomic issues. Some of the things you can do include artificial tears or prescription eye drops. And I did want to share — they're not a sponsor of the podcast or anything, but I did want to share what I use. This is Refresh Celluvisc Lubricant Eye Gel. I'm holding it up for people who are watching on YouTube. I really like this product. We'll link it also in the show notes just so you can see what it is. One warning about it though — it does make your eyes quite blurry for a short period of time, but it's really, really effective because it is a gel. If you're like me, you might be sensitive to preservatives. So I generally don't use eye drops that come in a bottle, but instead use these kinds of drops that come in individual vials. That's something you might want to consider if you have sensitivity to preservatives.
[08:02] Another common problem is blurry vision and light sensitivity. Weakened connective tissues can affect the stability of the cornea, which can lead to astigmatism and difficulty focusing. You may also have heard of blue sclera, which can occur more commonly with connective tissue disorders. That's when the sclera — the white part of the eye — becomes more thin and allows the underlying choroid to show through, giving it a bluish tint. Another thing that happens is floppy eyelid syndrome, where increased laxity in the eyelid tissues can cause chronic irritation, mucoid discharge, and light sensitivity.
[08:41] Another thing that you might be aware of is myopia, or nearsightedness. There are very high rates of high degrees of myopia linked to changes in the sclera and also in the vitreous — that's the fluid in the eye. There are also some things that can happen that can actually threaten your vision. One is retinal detachment, caused by thinning of the sclera or elongation of the eye, particularly in people who have high myopia. You can see things like flashes of light or curtain-like vision changes that require immediate medical attention. If you have dysautonomia or POTS, you might be used to going from sitting to standing or lying down to sitting to standing and getting dark curtains coming in from the side. If you get that with position changes, it's more likely to be related to blood flow to the brain, whereas if you just get it spontaneously, then it's more worrisome for something going on actually inside the eye.
[09:39] Another thing that people can get is called keratoconus — that's corneal thinning and steepening leading to distorted vision. Treatment can include scleral contact lenses or corneal cross-linking. I do have a client I've worked with who has these scleral contact lenses, and I can't even imagine. She has to put them in her eye every morning — she has to bend forward to put them in, and it sounds really rough. As someone who was very squeamish about her eyes and has never tolerated contacts, I hope I never need something like that.
[10:12] Another thing is lens dislocation. Lens dislocation is something we see in vascular and kyphoscoliotic types of EDS. This can result in visual distortions or complications like glaucoma.
[10:22] In order to prevent these complications and manage them, it's really important to have regular ophthalmologic exams for early detection of abnormalities like retinal detachment or glaucoma. You also want to use corrective glasses for refractive errors, and as I mentioned, use things like artificial tears for dryness. Like I mentioned earlier, I am planning on trying to find an ophthalmologist so that if I do have an eye emergency, I know where I can go. Eye emergencies can be very, very time-sensitive, so I think it is important for all of us to be aware of what our options are should that happen to us.
[11:02] We also want to be careful with surgical interventions like cornea or lens replacement, because like with other surgeries, we can have suboptimal healing. So you want to make sure to monitor your vision closely and report any symptoms you might have, like floaters, flashes of light, or sudden vision changes. We definitely need more research into treatments for EDS-related eye issues. If you happen to know an ophthalmologist who has expertise in EDS, please let me know, because I would love to have an ophthalmologist on to talk about this in a lot more detail.
[11:36] Okay. Next, Jackie asked about the relationship between mast cell activation syndrome, or MCAS, and multiple chemical sensitivity, often referred to as chemical intolerance. When I was very young, I had a lot of chemical intolerance. I don't really remember my early, early childhood years, but my mom shared with me that I had a lot of adverse reactions to things like bubble bath, soap, lotion, detergent, fragrances, things like that. And I've shared before on this podcast how I had so many problems with allergies as a teenager.
[12:10] The connection between multiple chemical sensitivity and MCAS is becoming increasingly recognized. They have shared mechanisms in that they both involve multisystemic symptoms that are triggered by environmental exposures, such as foods, chemicals, or drugs. Mast cells play a central role in allergic and inflammatory responses, and they're felt to be a common link. In MCAS, mast cells release mediators like histamine, proteases, and interleukins inappropriately, which may drive the symptoms of multiple chemical intolerance.
[12:46] There's also a concept called TILT — toxicant-induced loss of tolerance — and this may help explain how environmental exposures disrupt mast cells, leading to hypersensitivity in both conditions. We're going to talk more about TILT shortly.
[13:01] We do see overlapping symptoms with MCAS and multiple chemical sensitivity, such as neurologic symptoms like brain fog, headaches, and fatigue; gastrointestinal symptoms like nausea, diarrhea, or abdominal pain; cardiovascular symptoms such as fluctuating blood pressure or heart rate; and respiratory symptoms such as shortness of breath or wheezing. These are commonly triggered by factors like pesticides, volatile organic compounds, mold, or fragranced products.
[13:31] As I've discussed previously on the podcast, I would encourage everyone to let people know that you are sensitive to fragrances, because I feel like a lot of people are so sensitive to fragrances and we find ourselves in situations where we are exposed to a lot of them and then have a very severe reaction. I hear this from my patients and clients all the time — that they get themselves into situations where they have these extreme reactions because they are exposed to fragrances.
[14:01] In terms of prevalence and correlation, studies show that approximately 59% of patients with MCAS also meet the criteria for multiple chemical sensitivity, suggesting a strong association between these two conditions. As the severity of MCAS increases, the likelihood of having MCS rises proportionally, which suggests a shared biologic mechanism between the two. Both conditions are often initiated or worsened by exposure to environmental toxins such as pesticides, volatile organic compounds, combustion products, mold, and fragranced household products.
[14:31] As we discussed last time, and will be discussing more shortly, people with EDS, MCAS, and MCS often experience stigma due to the complexity and the "invisible" nature of their symptoms, which are often dismissed as psychosomatic. It's very important to recognize the connection between these conditions because it helps validate your experience and provide a framework for treatment.
[15:03] So how can we treat these problems? We can focus on stabilizing mast cells and avoiding triggers. We have of course discussed this a lot on this podcast, and we're going to be talking about cromolyn a little more shortly. Medications like antihistamines, mast cell stabilizers, and leukotriene inhibitors like montelukast can also help manage symptoms. We can also make lifestyle changes that include reducing exposure to known triggers such as certain foods, chemicals, or environmental toxins. And we're going to be talking about alpha-gal shortly as well.
[15:37] It's very important that we help educate healthcare providers so that they are able to diagnose and care for these patients. Please share this podcast with them, because hopefully this will help raise awareness and give them more tools in their toolbox to help you.
[15:53] My colleague and fellow mastermind, Dr. Claudia Miller, is the world's expert on TILT — toxicant-induced loss of tolerance. She's extremely generous with sharing her knowledge and expertise. And after reading more about her work, it seems like we're all probably tilted to some degree, but some are definitely more affected than others.
[16:12] I'll share in the show notes a couple of inventories that you can take in order to see how much you might be affected by toxicants. One is called the Quick Environmental Exposure and Sensitivity Inventory, and the other one is the Brief Environmental Exposure and Sensitivity Inventory. We will link both of these in the show notes so you can do these inventories for yourself. There are also lots of great resources on her website for patients and clinicians — videos, modules, tutorials, and other links. We'll have that in the show notes as well.
[16:46] There was also a fascinating paper that she published recently titled Assessing Chemical Intolerance in Parents Predicts the Risk of Autism and ADHD in Their Children. We will link that paper as well. We've been talking a lot more about autism on the podcast, and we'll link some other episodes in the show notes where we discuss that connection in depth, because it is a very important one.
[17:09] What they found was that parents with chemical intolerance scores in the top versus bottom 10th percentile had 5.7 times the risk of reporting a child with autism and 2.1 times the risk for ADHD. This is very important because we know that the prevalence of autism is increasing, yet we need more information about the biomechanisms. Definitely check out this paper, which I will link in the show notes.
[17:32] I also want to share a website with you about histamine and foods from the Swiss Interest Group Histamine Intolerance. You'll find excellent resources on their website about histamine content in foods and compatibility for histamine-sensitive people. Whenever possible, it's important to work one-on-one with a dietitian because there's huge individual variability in what people can tolerate, and over-restriction is very problematic. Not everyone can access a dietitian, though, so these resources can also be very helpful.
[18:05] Some people had asked for additional information about cromolyn. Cromolyn is a prescription medication, also known as cromolyn sodium, that is classified as a mast cell stabilizer. It prevents mast cells from releasing inflammatory mediators like histamine, proteases, interleukins, and leukotrienes, which are responsible for allergic and inflammatory reactions. Cromolyn sodium was derived from a natural drug product extracted from an Eastern Mediterranean herb. It was first discovered in 1965 and then approved in the US in 1973. So this is a very old medication. It's used in a variety of forms, including oral solutions, inhalers, nasal sprays, and eye drops.
Cromolyn is commonly prescribed for mastocytosis and also MCAS. Mastocytosis is a condition where the body produces too many mast cells. Mastocytosis and mast cell activation syndrome share a lot of symptoms, including diarrhea, abdominal pain, flushing, itching, and headaches. When we stabilize mast cells, cromolyn can reduce some of these symptoms and improve quality of life. Cromolyn can also be effective for managing allergic rhinitis or nasal allergies, asthma, and allergic conjunctivitis. It also reduces inflammation in the airways or eyes by blocking the release of histamine. It's particularly useful for preventing exercise-induced asthma or symptoms triggered by cold air or allergies like pollen. It is not to be used in an emergency setting, but is to be used as a preventative treatment.
[19:37] It's also been explored for off-label uses such as treating ulcerative colitis and even Alzheimer's disease. Cromolyn also inhibits calcium influx into cells and blocks chloride channels, further reducing inflammation and hypersensitivity reactions. As I mentioned, it needs to be used regularly for preventative purposes and does not provide immediate relief for acute symptoms like an asthma attack or a severe acute allergic reaction.
[20:02] In general, the oral absorption is poor, so the effects are generally localized to the site of application — for example, the GI tract, the lungs, the nose, or the eyes. Cromolyn is usually very well tolerated with minimal side effects compared to other medications. Common side effects can include mild nausea, headache, or irritation at the application site. Serious side effects are rare but can include allergic reactions.
[20:27] If you've ever looked online at some of the medications you take and seen what the potential for drug-drug interactions is, you've probably seen that most medications have extensive lists of interactions. Cromolyn is extremely unique in that it actually has no known interactions with other medications. Unfortunately, many people find it difficult to get this medication prescribed, which is shocking, because what I see with my patients and clients is that a lot of these people have much more risky prescriptions being prescribed by their doctors, yet those doctors won't prescribe cromolyn for some reason. I think part of that could be because a lot of doctors think newer is better. Of course, in a lot of cases newer medications are better, but not always.
[21:13] It's also difficult nowadays to get cromolyn in a lot of pharmacies, so sometimes you need to get it compounded. When you get it from a compounding pharmacy, however, you can also make sure that the excipients — the inactive ingredients that you don't tolerate — are not included in the formulation. Even if you've tried cromolyn before, you might want to consider that sometimes there's a synergistic effect with other medications like ketotifen. Synergy matters a lot. It's well known that opioids and benzodiazepines like midazolam and fentanyl will interact so that you get a much more profound effect when you mix those two as compared to when you use one or the other in isolation. This is similar to the entourage effect that you see with THC and CBD.
Cromolyn remains an important medication for managing chronic allergic and inflammatory conditions, especially in people who cannot tolerate stronger medications like steroids. I often recommend that people take their cromolyn and mix it with a topical that they know they tolerate so they can make their own topical medication at home. I've had a lot of people report really great success with this type of approach.
Okay. Next I want to talk about alpha-gal. After watching episode 139 on YouTube, somebody asked specifically for more information on alpha-gal, and I think this is a great suggestion because I know it was mentioned briefly by Dr. Theoharides, but I think we should touch on this a little bit more.
Alpha-gal syndrome is a food allergy triggered by a sugar molecule called alpha-gal that's found in the majority of mammalian animals. People with alpha-gal are allergic to red meat — for example, beef, pork, and lamb — and other mammalian-derived products such as gelatin, dairy, and some medications. Non-mammalian foods like poultry, fish, and plant-based products are typically safe. Ostrich meat is classified as a red meat based on appearance and texture, but it actually comes from a bird, not a mammal, and is safe with alpha-gal.
Alpha-gal is unusual in that it develops after being bitten by certain ticks, such as the lone star tick in the US. What happens is that if you get bitten by a tick, that sensitizes your immune system to that molecule. This tick-mediated origin is distinctly different from other food allergies.
[25:00] Okay. We're going to take a quick break. And when we come back, we're going to talk about what you can do if you suspect that you have alpha-gal syndrome. We'll be right back.
[25:00] Okay, we're back, and we're going to dig into alpha-gal syndrome. But I just realized that I forgot to show you the lid scrub that I use for my eyes as recommended by my optometrist. I'm holding it up to the camera for people who are on YouTube. It's called OcuSoft Lid Scrub. What I do — I don't know if the manufacturer would recommend this or not, but because they're pretty expensive, especially if you use one every day as my optometrist recommends, I actually cut them into four pieces and put the other three pieces back in the packet and kind of fold it over. I make sure to wash my hands before I do that and use clean scissors. I find this lid scrub to be very helpful and hopefully it will help prevent another infection in my eye.
[25:46] Okay, let's go on with alpha-gal syndrome. With alpha-gal syndrome, we usually see a delayed onset of symptoms. Unlike typical food allergies that can cause reactions within minutes of exposure, alpha-gal symptoms usually occur 2 to 8 hours after consuming mammalian meat or related products. This delay is thought to be due to the slower absorption of alpha-gal molecules in the digestive tract.
Common symptoms of alpha-gal include skin reactions like hives, rash, and itching; gastrointestinal issues like nausea, vomiting, diarrhea, and abdominal pain; cardiovascular symptoms like dizziness, fainting, or a drop in blood pressure. And severe cases may involve anaphylaxis, which is a life-threatening allergic reaction.
A striking statistic is that alpha-gal syndrome is a leading cause of adult-onset anaphylaxis in the US, accounting for up to one-third of cases with a definitive cause. So keep in mind that they're excluding cases of anaphylaxis where we don't know a definitive cause — but still, alpha-gal being responsible for a third of cases with a known cause is really remarkable, especially when you consider that a lot of doctors have no idea what alpha-gal is.
[27:01] How do we diagnose alpha-gal? Alpha-gal is often misdiagnosed as other conditions like irritable bowel syndrome due to overlapping gastrointestinal symptoms. It can take years for patients to receive an accurate diagnosis. This is really unfortunate, because people can often take years to get an MCAS diagnosis, years to get an EDS or HSD diagnosis — and then you add on top of that years to get an alpha-gal diagnosis if that's a contributing factor. It just adds more and more complexity to the situation. But there is testing that you can do to detect alpha-gal IgE antibodies via a blood test.
[27:38] I'm going to share a link in the show notes from 2AlphaGals. They have a lot of great resources on their website and their motto is "test, don't guess." I think that's a really great motto and I definitely encourage you to check out their resources.
Living with alpha-gal can be very challenging because strict avoidance of mammalian products includes not only food, but also certain medications and even personal care products. We'll talk more about that shortly. The dietary restrictions and social isolation can make life really challenging. Prevention focuses on avoiding tick bites through protective clothing, insect repellents, and awareness in tick-prone areas. Treatment for reactions involves antihistamines for mild symptoms and epinephrine for severe anaphylaxis. Long-term management involves dietary adjustments, and in some rare cases, desensitization can be considered. Desensitization approaches are experimental, with no widely accepted desensitization therapy currently available.
[28:42] Although most cases of alpha-gal are reported in the Southeastern US, it has been diagnosed worldwide. I want to make a couple of other points about how alpha-gal differs from other food allergies, which I know a lot of people experience. Most food allergies are related to proteins such as peanuts or shellfish, but alpha-gal is unique because it's triggered by a carbohydrate molecule. Both can go undiagnosed for many years, but the blood test measuring alpha-gal-specific IgE antibodies can be very helpful for confirmation of the diagnosis.
[29:16] In terms of treatment, there are no dietary supplements that cure or directly manage alpha-gal syndrome, but certain mammal-free supplements can address nutritional deficiencies caused by dietary restrictions. The first thing you might want to consider is mammal-free dietary supplements, such as vegan vitamin D3. Many alpha-gal patients are deficient in vitamin D, as animal-derived sources like lanolin from sheep's wool can trigger reactions. One option includes plant-sourced Doctor's Best Vegan D3. I will add a link to that in the show notes.
[29:48] Vitamin B12 is another important consideration, since red meat is a primary source of B vitamins. Alpha-gal patients may require supplementation to maintain energy levels and support heart health. There are a couple of other mammal-free options that I will include in the show notes.
[30:04] Iron deficiency or anemia is common among alpha-gal patients due to the avoidance of iron-rich mammalian meats, but there are plant-based sources of iron that I will include in the show notes. Many supplements contain problematic mammalian-derived ingredients such as gelatin, tallow, whey, or lanolin, so make sure to review the ingredient labels carefully to ensure that your products are alpha-gal-free. You can consider using a compounding pharmacy to create custom mammal-free formulations for your medications and supplements. Always consult with your healthcare provider or allergy specialist before starting any new supplement or medication to make sure that it is safe.
[30:44] If you do think you might have alpha-gal, there's another resource that I will share with you in the show notes called Vegan Med, and this can help you identify animal-free products that are suitable for alpha-gal patients.
[30:55] Okay. Next, I want to address another listener question. This person asks: how can we start conversations with providers about joint injury and pain management? Specifically, this person has a surgery scheduled a ways out, and the surgeon is refusing to provide pain management before surgery. The surgeon's explanation was, quote, "because then we couldn't give you pain medication after the surgery" — which this person says they know is false, but they would love to have research to hand to the surgeon.
[31:23] I'm glad this person asked this question because one of the risk factors for more severe postoperative pain is poor control of pain before surgery. Now, this doesn't mean that you should go and get a prescription for opioids, because there are lots of other options for controlling pain. I would like you to check out episode 138, Lower Your EDS Pain, because I think you'll find some helpful tips there.
[31:42] I have many friends that are surgeons and I'm also married to one, so I definitely know how they think. I also know how the normal workflow goes. You go in and have your preoperative evaluation or consultation. Then at some later date you have your surgery, and after that you have your postoperative care. In between your surgery and your postoperative care — during your postoperative care — is called the global period. Your surgeon needs to manage what's going on with you during that global period, included in their fee for the actual surgery. The global period varies depending on the surgery. The bigger the surgery, the longer the global period.
[32:19] The period between the preoperative evaluation and the surgery is one where your surgeon is going to expect you to have your problems managed by the rest of your team. The surgeon really only wants to deal with problems that are directly a result of the surgery that they did. Before your surgery, they probably don't really consider you to be their patient yet. So unfortunately, you will need to get help from your other clinicians. Work with the other people on your team — like your primary care provider, your pain doctor if you have one — and get referrals if you need to, in order to get your pain under better control before your surgery. It is very, very unlikely that your surgeon will prescribe any medication to you before the surgery.
[33:04] Next, I want to address another listener question: what kind of exercise is optimal? I had a client the other day — meaning somebody that I meet with online, but I haven't seen them one-on-one in person in Wisconsin or Colorado, the two states where I'm licensed to practice medicine. So I can give them personalized information and suggestions, but I'm not giving them prescriptions or lab orders. This client said to me that her physical therapist told her not to move. And I was like, what? Because we need to move.
[33:38] In fact, when my EDS was the least well-controlled, over a decade ago, I was suffering from severe kinesiophobia. Kinesiophobia is fear of movement. I hurt myself doing such small things — getting up off the sofa and pushing my hand down on the sofa in order to stand up, and dislocating a finger. I would do very, very small things and injure myself so easily. Once I learned about kinesiophobia, it really helped me to realize that we need to move. We just need to learn how to move in a safe way.
[34:10] I will link in the show notes some episodes that you might find helpful about movement and also about nutrition and surgery. I also recently created some playlists on YouTube, which will hopefully help you find the information that you want.
[34:22] A few other tips on movement. You want to be very careful with group classes. If you have watched me on YouTube or seen much of my social media, you might have seen me talk about Zumba. I love, love, love Zumba. It is so much fun. And I got certified as a Zumba instructor a number of years ago. But unfortunately group classes are something that's really challenging for me. I tend to get caught up in the peer pressure and sometimes I overdo it. I've gotten a little bit better, but just in general, be careful with group classes because you want to make sure that you're listening to your own body and not too distracted by what's going on around you. Make sure that you're doing a pace that is good for you.
[35:04] When we say "start low and go slow," you might think, okay, I am starting low and going slow — but you might need to start even lower and go even slower. One thing I ask you to pay attention to is how you feel the next day. If you do an activity and you can do it again the next day, then that was probably a good amount of activity. If however you do an activity and the next day you are either too sore, in too much pain, or too fatigued to do the activity again, then you probably overdid it the day before. We also want to consider post-exertional malaise. I had a great conversation about post-exertional malaise and ME/CFS recently with Dr. Gellman, and I'll link that in the show notes as well.
[35:47] Okay. Next, I wanted to talk about the stigma of EDS. There were so many comments after the last solo episode that I did, so I wanted to follow up. Many of my patients report getting more and more gaslighting when they have a diagnosis of hypermobile EDS, HSD, MCAS, et cetera, but it varies a lot. I urge you to revisit episode 82, where I spoke with Dr. Calverson, and also episode 86, where we talked about the unfair EDS journey.
[36:14] So what are some important things to know about stigma and EDS? Unfortunately, many people with EDS report psychological trauma due to dismissive or hostile attitudes from clinicians. This leads to distrust in healthcare providers and avoidance of medical care. Clinicians often lack knowledge about EDS, which leads to skepticism about symptoms, which are sometimes misattributed to psychiatric causes or dismissed as exaggeration.
[36:42] We also know there's a huge gender bias. Women with EDS face additional stigma as their pain is more likely to be dismissed as hysterical or psychosomatic. This reflects a broader bias in medicine.
There's also a huge impact from this stigma. Many patients experience a prolonged diagnostic odyssey during which their symptoms are invalidated, delaying proper treatment. A significant number of patients avoid discussing their diagnosis or seeking medical care altogether due to fear of bias and stigma. Patients often internalize skepticism, which leads to self-doubt and worsened mental health outcomes. I know this happened to me when I was at my worst. I definitely was doubting myself because my doctors were doubting me.
[37:27] But what can you do? Number one: focus on symptoms. Sometimes it might actually be best to downplay your hypermobile EDS or HSD diagnosis. This is something that I do sometimes, depending on what I need from a particular appointment. I don't want my clinician to write off my problems as being EDS-related if I think it's actually not. So although you want your diagnosis in your chart, you don't want to lead with that diagnosis, because maybe the clinician won't do a proper full assessment of what's going on at that point in time. Of course, I recognize that I'm very fortunate and that I can manage most of my problems very well on my own, but sometimes — just like you — I do need help. Like, for example, with my recent eye problem.
[38:13] Another thing you can do is share educational materials about EDS. Please share the Bendy Bodies Podcast and the Bendy Bulletin, as these are really good resources to help inform clinicians. You also want to use concise language to explain your symptoms. It's good to share resources with your clinicians, but you want to approach this in the right way — bring resources to your clinician in a way that's respectful and doesn't make them feel like they don't know enough.
[38:42] When possible, seek out specialists who are familiar with EDS. Share positive experiences with trusted providers to establish rapport and reduce anxiety about future encounters. Keep detailed medical records and symptom logs to validate your concerns. It's definitely helpful from a stigma standpoint to bring a supportive advocate to appointments whenever possible. Having a supportive advocate can help that clinician see you in the bigger picture — they see you as part of a family unit or friend unit, rather than just a single individual.
[39:10] You also want to politely challenge misinformation by asking questions like, "Could you explain why you believe this isn't related to EDS?" or "Why are you writing this off to EDS?" If the clinician is unresponsive, request a referral to another provider in a non-confrontational way.
[39:34] What else can we do? We can advocate for better training on conditions like EDS and HSD in medical schools and continuing education programs. We also want to highlight the role of gender bias in dismissing symptoms and advocate for equitable treatment.
[39:48] I also want to point out that you can be a good EDS ambassador. By being a good EDS or HSD ambassador, you can help address the lack of knowledge and misconceptions surrounding these conditions. For those who are able to do this, if you can help influence policies, promote research, and improve awareness, this will help access for everyone. We want to provide encouragement, resources, and representation for people affected by connective tissue disorders.
[40:15] So it's important to educate yourself and get a deep understanding of EDS and HSD. Stay up to date on research developments and advocacy initiatives. Share your personal experiences or those of others to humanize the condition and connect with audiences. Highlight the daily realities of living with EDS and HSD — this helps foster empathy and understanding. Utilize social media, blogs, podcasts, or public speaking opportunities to help spread awareness. Working with organizations like EDS UK, the EDS Society, EDS Awareness, and Standing Up to POTS can also be very helpful.
[40:54] As you probably know, I finish every episode with a hypermobility hack. So today's hypermobility hack is going to be a bit more information about preparing for appointments with complex illness. I did cover this a bit in the past, but it's so important that I think it's worth covering again.
[41:10] When you have a complex condition and you are going in for a medical appointment, hopefully your doctor is viewing themselves as being on the same team as you, and they're trying to solve a medical mystery. Do everything that you can to help your doctor solve that medical mystery. You don't want to make your doctor have to look for a needle in a haystack. You want to be succinct and specific, and you can ask a trusted friend to review your documents for clarity and brevity. Fill out your requested forms as soon as possible so that your doctor has plenty of time to review them.
[41:44] Another thing you want to be sure to have is an organized binder. Have this available and bring it to your appointment. You may or may not end up showing some documents inside the binder to your doctor, but at least if you have it available, it might save you from having unnecessary tests. In that binder, you want to have things like your lab tests, imaging results, and encounter notes. It's very important that you have the full encounter note, not the summary. The encounter summaries are pretty useless, but the full encounter note is very helpful. Other documents you want to have include a timeline — use bullet points if possible, and include things like diagnoses and tests. You also want to have a list of symptoms organized by systems if possible.
[42:31] Send in this kind of information when asked, but otherwise bring it to your appointment. It's very important, if you're asked to submit information ahead of time, to actually do so ahead of time, because that's when people are often looking at your chart. For example, I often look at a person's chart the day before their appointment. So if I go into their chart and nothing is there, and then they submit everything the day of their appointment, they've already missed that window of opportunity. I know from being on both sides of this equation that it can feel like it's so quick to look at all of this information — but what you might not realize is that in a full day of seeing patients back to back to back, you actually are not able to look at that information in the moment. The day before, when I have the time, that's when I want the information to already be there. So whenever possible, submit the information at the time that it's requested. I don't know other people's workflow, but that's my workflow, and it's really, really helpful when you submit things in a timely fashion. So thank you for doing that.
[43:31] Again, bring a support person who can give more context. That person can take notes and help you remember what you wanted to ask. They can also help you assert yourself and debrief afterwards. Having this second set of eyes can be so helpful — sometimes we might think an encounter didn't go so well, but we can ask the other person what they thought.
[43:52] Also, be sure to bring things like snacks, water, and other needed items like pillows or blankets. And if you need a break, be sure to speak up.
[43:59] If you're seeing a doctor who's not super familiar with things like EDS, HSD, or MCAS, ask them to suspend disbelief. You might say something like this: "I understand that you might not believe in CCI, MCAS, CSF leak, et cetera. I don't know that I would have believed it myself if I wasn't living through it. I ask you to please think for a moment — what if these are real conditions? Imagine what this must feel like."
[44:32] It might also help to say: "I don't need you to fix it. What I need is blank." The blank might be a referral, an imaging order, validation, or a discussion at a follow-up appointment. Make sure that you let the person know what it is that you need. Sometimes I think doctors go into these appointments and don't handle them very well because they think the person is expecting a solution. Most people that I meet in this chronic illness space understand that most of the time there is no simple solution — especially if they're seeing a doctor in an insurance-type setting where the appointment is only 15 minutes long. So if you let them know specifically what they can do to help you, I think you're more likely to get what you need.
[45:20] Let them know that you're willing to come back for another appointment and maybe focus on just one aspect. It can help to do research ahead of time so that you know what doctor you want to be referred to. I understand that it's not fair that this responsibility and all of this work falls on patients — especially patients who have complex illness and already have so much going on. You have brain fog, you have all these symptoms you're trying to manage, you have foods that you can't eat, so you're having to do extra work preparing your foods, et cetera. But at the same time, this is just the reality of the times that we're living in. If you have a plan with your doctor, this can help lower your anxiety and help you feel like you're a team on the same side.
[46:01] Okay. Well, that's all for today's episode. Thank you so much for listening to this week's episode of 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.
[46:19] If you would like to dig deeper, you can meet with me one-on-one. Check out the services page of my website at hypermobilitymd.com. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, TikTok, Twitter, or LinkedIn at HypermobilityMD. You can find Human Content, my producing team, at Human Content Pods on TikTok and Instagram. You can find full video episodes up every week on YouTube at Bendy Bodies Podcast.
[46:43] 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.