Examining Upper Extremity Pain with Pradeep Chopra, MD

[00:35] Pradeep Chopra, MD: When patients with EDS go to a doctor who has probably never seen EDS, gets all excited about it and says, "Hey, show me what you can do" — that's when you say, no, I'm not going to show it to you because it's not going to help me in any way. It's just going to entertain you. I'm not doing it. Because remember, stretching your joint will stretch the ligament and that's going to damage it forever.

[01:09] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host and founder, Dr. Linda Bluestein, the Hypermobility MD, here to provide you with accessible information and inspiration about hypermobility disorders like EDS, HSD, Marfan syndrome, and so much more. Combining my medical expertise and personal experiences and my passion for the science and clinical treatment of symptomatic joint hypermobility, I also treat patients and coach clients to optimize their quality of life. So let's get after it. As always, this information is for educational purposes only and is not a substitute for medical advice.
[01:47] Today we are so excited to have my friend and mentor Dr. Pradeep Chopra back with us for yet another great conversation. Before I welcome Dr. Chopra, let me introduce my friend and yours, Jennifer Milner, former professional ballet and Broadway dancer who trains hypermobile artists to work to their fullest potential. She knows a thing or two about being a bendy body. We are so fortunate to have Jen here today co-hosting this episode. Hey Jen, it's so good to have you here.
[02:12] Hey, always good to be here.
[02:16] All right, and Dr. Pradeep Chopra is a Harvard-trained anesthesiologist, double board certified in pain management and anesthesiology, director of the Center for Complex Conditions and assistant professor at Brown Medical School, with a special interest in chronic complex pain conditions and their associated coexisting conditions. Dr. Chopra, hello and welcome back to Bendy Bodies.

[02:37] Pradeep Chopra, MD: Hello. This is Pradeep Chopra, and it's a pleasure and an honor again to be back with you. I thoroughly enjoyed doing the last two or three podcasts. I'm not even sure how many there have been.

[02:54] Dr. Linda Bluestein: This is our third.

[02:55] Pradeep Chopra, MD: Third one. I'm happy to talk about EDS and my 30 years of experience in treating this condition.

[03:05] Dr. Linda Bluestein: Fabulous. We love getting to learn from you, and our listeners are always very grateful for the information. We did previously speak about pain in the abdomen, the chest, the head, the neck, and the spine. I highly encourage listeners to check out those episodes as well. Today we are going to speak about pain in the extremities. So, Dr. Chopra, maybe you can start off by telling us why this is such an important topic to cover when we're talking about Ehlers-Danlos syndromes.

[03:39] Pradeep Chopra, MD: The reason I want to talk about upper extremities is because we are covering the whole body part by part. Obviously, upper extremities are extremely important for a number of reasons. Among all the body parts, they are the most used — that's the part we use for our activities of daily living: writing, eating, everything else.
Before we get into the upper extremity segment, after the last podcast on abdominal pain, there was something I remembered we forgot to talk about, and that was upper back pain. One of the more common reasons for upper back pain — the area between the shoulder blades — is actually gastroparesis. It has been seen again and again: patients with gastroparesis, that is slowing down of their stomach movements, experience upper back pain.
[04:46] So just to recap upper back pain: gastroparesis, which is slowing down of the movement of stomach contents. The second was the posture in which you hold your head and neck, and the slouching posture. And then we talked about loose ribs and loose vertebrae in the upper thoracic and cervical region. These are the common reasons.
There's another reason that is not particular to EDS, but is common amongst everybody — and of course EDS patients get the non-EDS conditions as well as the EDS conditions. That is called repetitive strain injury, from excessive use of your upper extremities. We'll talk about that when we talk about upper extremities.
[05:30] So, starting from the top, let's talk about shoulder pain. When I talk about the shoulder joint, I mean the rounded portion that you see — the rounded portion of the shoulder. This is generally made up of two joints. One is called the glenohumeral joint, which is the bigger joint, the rounded portion. And then you have a tiny little joint next to it that you can barely see, called the AC joint or the acromioclavicular joint. They both hurt, so that's the problem.
[06:14] In any case, the shoulder joint is one of the most unstable joints in the human body. Actually, the two most unstable joints in my thinking are the TMJ and the shoulder joint. The shoulder joint is not a stable joint because it needs an excessive range of motion — you can literally turn your shoulder nearly 360 degrees. From an evolutionary point of view, you need that movement: if you're being chased by a saber-toothed tiger, you can climb up a tree, or if you want to hunt a woolly mammoth for dinner, you can throw a spear at it. The price we pay for that excessive range of movement is loss of stability of the muscles around the joint.
[07:13] To give you an example, the hip joint is an extremely stable joint packed with muscles all around it. It's a deep joint, but its range of motion is just very limited — all it does is move backwards and forwards. In contrast, the shoulder joint is a very flexible joint and not a super stable joint. Obviously in EDS, it becomes a problem.
[07:41] At this point, I'd like to talk about why EDS patients have a loose shoulder joint and what happens. You have to go back to childhood. Most people with EDS are very flexible, and because of their flexibility, they're always chosen for all sorts of dances — and as you both know — they're always chosen for ice skating, cheerleading, and all of those sports and athletics. That's the point at which their shoulders get damaged.
[08:17] For all of the parents who are listening to this, this is a very cautionary note: I would suggest avoiding any of these activities at a young age, or if you are going to do them, be very careful that the child does not use an excessive range of motion in their shoulders. Because once a joint is overstretched, there is very little chance of it ever going back again.
[08:42] In my experience, the reason I say this is because I've seen adults who don't have very unstable shoulder joints, and when you ask them about their childhood they'll say, "Yeah, I wasn't — I was one of those nerds who never really took part in athletics." And then you have this other group of people who were gung-ho about cheerleading and dance and athletics, and their shoulders are now gone. That's the problem.

[09:07] Dr. Linda Bluestein: Well, it's interesting that you say that because those sports and arts are inherently attractive to people with a large range of motion in their shoulders, because they can reach those full, completely incredible lines and do those amazing things. And when your child is 10 and they're like, "Yeah, it clicks all the time, but it doesn't hurt"—

[09:30] Pradeep Chopra, MD: Right.

[09:31] Dr. Linda Bluestein: It's hard to say, "Stop doing that because it'll hurt when you're 20." Especially if they don't even say that it clicks — they may think everybody clicks. Or if they have no problems whatsoever, I mean, this is really important because I get asked this all the time: should my child dance, do gymnastics? If they have no problems whatsoever but they do have either localized or generalized joint hypermobility, it is a tricky conversation, especially if they're passionate about what they're doing and it's helping their mental health and helping them stay strong. Knowing what the future might hold for one person as compared to another can be really hard, don't you think?

[10:21] Pradeep Chopra, MD: I've had very dirty looks from kids when I tell them, "Listen, you can't do cheerleading or you can't do dance anymore" — it's not dance as much as things like cheerleading, rollerblading, roller skating, and things like that. I do get dirty looks.
[10:44] So I've figured out a way. I tell them that swimming is a good choice. You give them an alternative exercise or alternative athletic activity. I'll say, "Look, swimming is a good choice for you." You can look at swimming and other activities where you're not — or you can do your dance moves, you can do all of these things, but not on a competitive level. Parents need to talk to their teachers about keeping it low-key and not pushing them.
[11:19] Preferably the best option is, of course, not to do it at all. If they have to do it, keep it low-key or redirect them to some other athletic activities that are not going to be as harmful, like swimming and even running. Track is another good one they can do as children — but only when they're children, not when they grow up. Once they grow up, track is a very bad idea. You can redirect their attention to something else.

[11:52] Dr. Linda Bluestein: Even with swimming, all of my clients who swim or have swum at some point tend to specialize in the butterfly stroke because they have the shoulders that can just pop out of the socket and give them this fantastic range of motion. So wherever they end up, and however healthy they're trying to be, I think a huge part of that is the intentionality of finding someone who can train them in that end range of motion. If they're a baseball pitcher, a gymnast, a swimmer, whatever it is, you need to say: this is the range of motion you're working in, we have to make sure you're as stable as possible. Find people who understand hypermobility, even if you're not in one of those higher-risk, more extreme sports, who can really understand and train you to work safely with your wonky body.

Pradeep Chopra, MD: Did you say monkey body or wonky body?

[12:43] Dr. Linda Bluestein: Wonky body. Monkey would sometimes be somewhat appropriate also. I think it's kind of like thinking about football players and head injury. I try to give families the information and say, think about your family history — what do your parents look like in terms of, are they having problems with chronic pain or not? Do you have difficulty building muscle mass to protect your joints or not? Where are you on that spectrum?
[13:18] Yesterday I gave a talk at the Colorado Ballet Academy and all the kids wanted to have their knee hyperextension measured. A lot of them, of course, have hyperextended knees, but not all of them by any means have EDS. We don't know at these ages — we won't know until much later whether they start to develop more symptoms and problems. I think I would rather that they make that decision for themselves.

[13:52] Pradeep Chopra, MD: A lot of times parents don't realize that their children have hypermobility, or they don't take it seriously because they've never heard of EDS. I've always said that in schools you always have this mandatory scoliosis test — which isn't really a very helpful thing to do anyway. Why can't we do the Beighton score, which takes nine seconds to do? If the Beighton score is super high, like 9 out of 9, then go see someone who does EDS and find out what the next step is.
[14:32] To bring to your point about hypermobility: you spoke at the Colorado Ballet Academy and you have a crowd of 100 or 200 people. Who has EDS and who doesn't? They all look like they might have EDS, but you don't want to brand them just because they're hypermobile. In my mind, I have a little hack.

[14:57] Dr. Linda Bluestein: A hack?

[14:59] Pradeep Chopra, MD: Yes. Number one for our podcast this time: I ask them if they have other symptoms unrelated to joints — do they get lightheaded when they get up from bed, or do they get palpitations? If they say yes, then it triggers me to go more into the EDS territory. If they say no, and their Beighton score doesn't seem terrible, then I'll say keep an eye on things — they may get better, they may get worse. But if they get worse, you really need to follow up with a specialist.
So I just slip in that little POTS question. Because if they have POTS, they really probably do have EDS. It's not very scientific, this connection, but it gives the parents some sort of a parameter — a way to stop and look for a specialist.

[15:55] Dr. Linda Bluestein: I think that makes a lot of sense. I do want to point out, just so we don't get people panicking, that if you've had a really hard day of class and rehearsals and haven't drunk enough, you're going to get dizzy when you stand up. We're talking about if this happens on a more frequent basis, not if it's happened once in a while, or if you had the flu or a cold. So yeah, I think that's an excellent way to look at it.
[16:20] I do a similar thing — do they have gastrointestinal problems, for example? It's not uncommon that some will say yes, I have pain after eating or whatever. So I think that's a good approach.

[16:37] Pradeep Chopra, MD: Getting back to the shoulder joint — as I said, it is an inherently very unstable joint, whether you have EDS or not. But when you have EDS, the first thing to remember, especially for parents, is to make sure your children do not hyperextend their shoulder joints.
[16:57] Think of the ligaments around any joint in your body as an elastic band. An elastic band, if you stretch it a little, is fine — it'll go back. But if you stretch it too much, it's not going to go back. Then the shoulder becomes unstable. Here's the problem: the ligaments around the shoulder joint don't just support the shoulder itself, they support the whole arm. The arm starts to hang off, and the weight of the arm drags on the shoulder joint. When that happens, they have a constant pain down their arm. It's always hurting, and of course the shoulder is super loose.
[17:42] For any of our listeners thinking, "I can just go to the orthopedic surgeon and they can tighten it up" — bad idea. It has been shown again and again in studies that surgery on a joint makes the joint inherently weaker afterward. I've had patients who've had six joint surgeries. I had a patient last week who had 17 right knee surgeries. Seventeen. At some point, the surgeon should have said, we're not getting anywhere — we should stop.
[18:29] What happens is when they do surgery, they cut tissue. They sew it up again with the idea that the tissue will heal by itself and keep the joint tight, which does happen under non-EDS conditions. But in EDS, once you cut that tissue, no matter what, it's going to re-stretch again — and this time it's weaker than before. So the stretching is going to be even greater, which makes the joints — not just shoulder joints — unstable. There's really no good surgery to fix that and no good mechanism for doing so.
There are also no great braces to fix that. There is one brace that I do like, and we'll talk about that — we mentioned the BodyBraid in one of our last podcasts and we'll get into that later. What I'm trying to caution people is: with your shoulder joint, stay under your range of motion. You don't have to go all the way.
[19:34] I can bring my arm all the way up next to my ears, straight up. I don't need to do that. There's no reason to do that unless you're trying to reach something on the top shelf. Most of the time, stay at 90 degrees — your arm should be at 90 degrees to your body, or your armpit should be at 90 degrees, so that your hand can reach your face. That's all you need. We don't need our hands going higher than our head because it's not really helpful under most circumstances. If you're being chased by a saber-toothed tiger, yes, then you can go up the tree. But otherwise there's no need.

[20:28] Dr. Linda Bluestein: Do you mean 90 degrees of flexion or 90 degrees of abduction?

[20:33] Pradeep Chopra, MD: Abduction — yes, that's a good point. That means moving your arm to the side. You raise your arm to the side up to 90 degrees. That's enough to bring your hand to cover your face — protect your face, eat, bring your hand up to your face. That's all the range of motion we need in the shoulder. That is way under the full range of motion, so it doesn't damage the shoulder capsule or the ligaments. That's how you can protect it.
[21:16] Most adults with EDS do have loose shoulder joints — some more than others — but this rule applies to everyone: keep the shoulder joint under its range of motion. Stay at 90 degrees of abduction away from your body. Your hand should be able to cover your face, so you can brush your teeth, feed yourself, take care of yourself.
[21:49] And this rule of staying under your range of motion applies to every single joint in the body. You don't want to overstretch your elbow joint or your knee joint. If you overstretch an elastic band, it'll never go back — it'll just stay as a loose thread. That's the whole idea.

[22:10] Dr. Linda Bluestein: One of the things I talk about with my clients — and this may not be 100% accurate — is how if other people's joints are rubber bands, ours are closer to thinking putty or silly putty that stretches but doesn't necessarily come back to its original form the way that rubber bands do. I encourage them to think about it: are we going to sit in a hyper split or throw our shoulders into some comfortable but crazy position and allow the joints and the connective tissue to stretch and end up where they land? Or do we want to keep it smaller so that we'll have that resilience still in there?

[22:50] Pradeep Chopra, MD: Yes, absolutely. On that point, not related to the excessive range of motion but relevant: oftentimes people with EDS will crack their joints. Now, let's differentiate between cracking and popping. Cracking is when you release the pressure on your joints — like cracking your knuckles. Popping is subluxing or dislocating your joint.
[23:13] Cracking joints is common in EDS, and it's okay to do that. I've had parents who freak out because their kids are constantly cracking their knuckles or their spine. It's okay, as long as they are the ones doing it. The theory behind it is that between every joint, there is a gap, and in that gap lives a fluid in a pocket — that's the joint fluid. There are different theories, but generally the volume of that fluid increases in loose joints. Once it holds a lot more fluid, the pressure inside the joint is excessive. So what they do is crack their joints more often to release the pressure, and that's fine. Most times they'll tell you they feel better, they have less pain, when they crack their joints.
We non-EDS people do that too — we crack our necks a few times, stretch our shoulders and crack them. It's fine as long as you're the one doing it and not anybody else.

[24:27] Dr. Linda Bluestein: I'm curious — because a lot of those things become habitual — and I definitely have joints that crack and ones that pop, and I had shoulders that popped and subluxed a lot before I knew what that was. Do you think that cracking, done habitually over time, causes those ligaments to stretch out? Or do you not think that happens?

[24:53] Pradeep Chopra, MD: No, they don't, because they're not really stretching their ligaments. What they're doing is moving the joint in a certain way that releases the pressure inside the joint. There are several theories as to why the pressure inside the joint increases — one theory involves a collection of carbon dioxide, another says fluid simply collects in there. No one knows for certain why, but we know the volume increases. And when you're cracking a joint, you're not overstretching it.

[25:22] Dr. Linda Bluestein: And that's also called cavitation, right?

[25:25] Pradeep Chopra, MD: Yes.

[25:26] Dr. Linda Bluestein: Okay. In case people have heard that word.

[25:28] Pradeep Chopra, MD: So that brings us to our second hack. You can't choose being a burglar as your profession.

[25:37] Dr. Linda Bluestein: You can or cannot?

[25:37] Pradeep Chopra, MD: You cannot. Because you're going to be cracking your joints all the way through.

[25:46] Dr. Linda Bluestein: People with EDS don't make good burglars — is what you're saying.

[25:49] Pradeep Chopra, MD: They don't. Well, they can sneak through small spaces, but unfortunately it's the cracking that gives them away.

[25:57] Dr. Linda Bluestein: Okay, so I feel like that's a zero-sum balance, because on the one hand I can't sneak up on anyone — as my children say — because my ankles are snapping and popping away. But on the other hand, once I'm in handcuffs, I can subluxate my thumb and get out of them. It kind of evens itself out, right?

[26:16] Pradeep Chopra, MD: Jennifer, let me just clarify one thing. Tell me about this incident when you were handcuffed — allegedly —

[26:26] Dr. Linda Bluestein: No, you know, speaking of that though, with the thumbs — the reason I know that is because I have never unhooked a bracelet to put it on my wrist. I always just slide them over my hands and tuck my thumb in to slide it on. I didn't know everybody couldn't do that until I was an older teenager and somebody was like, "What are you doing?" And I was like, just tucking my thumb in so I can put my bracelet on. That's funny.

[26:46] Pradeep Chopra, MD: So we just went off topic. The shoulder joint, again — so we're talking about protecting your shoulder joint. There are really no great braces for shoulder joints except the BodyBraid. We talked about the BodyBraid in one of our last podcasts. It looks like a bunch of tape put together, but it's a phenomenal piece of equipment — a brace that was invented by a physician from Toronto. You can visit the website and see how it works. One of the things it does really well is stabilize the shoulder joint. There are two ways you can wear the BodyBraid to stabilize the shoulder joint — stabilizing means keeping it from subluxing while still being able to use it. You don't want to freeze a joint so you can't use it; then there's really no point. The BodyBraid does that very well.
Now, if the shoulder joint becomes unstable, the muscles around it tend to tighten up as a reflex to try to stabilize it. That's when patients feel like something is not in the right place and it hurts a lot. Once you put the joint back in place, the pain goes away. But the point I'm trying to make is that the pain from a joint dislocation or subluxation is not from the joint itself — it's from the muscles around the joint.
[28:53] The group of muscles that control the shoulder joint is called the rotator cuff group. Oftentimes, when patients are subluxing their shoulder joint ten times a day, most of their pain is from the muscles and not as much from the joint itself. This is the problem. They show up at their provider's office and it looks like, "Oh, you've got muscle pain — let me do something for the muscle pain and help relax that muscle." It could be dry needling, trigger points, massage, or medicines to loosen up the muscles. But you do not want to loosen up the muscles when they are the very thing that's keeping the shoulder joint in place. Once you loosen those muscles, your shoulder is going to sublux even more.
[29:50] This principle applies to all joints. The concept that your muscles are very tight and we should loosen them up is not a good idea, because when you do that, you're taking away the one thing that keeps your joint stable. Obviously, there is a cutoff point when the muscle pain is so severe that you need to do something about it — then you can, but to a limit. Do not get very aggressive about loosening the muscles, because once you loosen them too much, your joint is going to sublux even more.

[30:36] Dr. Linda Bluestein: That's a great point, and something I deal with a lot with my clients. When they have so much tightness they say, "I just want to release this, it feels so tight." For me, that's a signal to ask: what's not working? What is super loose? If the front of their hips feel super tight, what's not working in the back of the legs? If their pecs feel really tight, why are the pecs working so much? What compensatory strategies have developed because of that?
[31:06] I tell them, I can't just loosen this up — it's like taking too many rocks out of a rock wall. The rock wall is going to collapse if we don't put something else in to hold that structure up. So we take a little out, we do a little strengthening of something else, and we gradually replace the rocks in the rock wall, but we can't just take them all out at once. Really great point.

[31:28] Pradeep Chopra, MD: Right. And I have —

[31:30] Dr. Linda Bluestein: I'm sorry, can I ask a couple of follow-ups before we move on?

[31:33] Pradeep Chopra, MD: Sure.

[31:35] Dr. Linda Bluestein: The first thing is, could you comment on the concept that a tight muscle is a weak muscle? And also, it's very, very common that patients who come to me after seeing other clinicians are taking daily muscle relaxants — prescribed not for an acute episode, but every single day. Would you comment on those two things?

[32:05] Pradeep Chopra, MD: On the first point: patients with EDS have inherently weak muscles because their connective tissue is weak. The risk of having weak connective tissue is that it will break down easily and takes much longer to heal, which is why I've said you have to limit and pace your exercise so you're not causing too much wear and tear to your muscles.
[32:40] When a muscle becomes tight in an EDS patient — and as Jennifer mentioned — you have to look at why the muscle is so tight. There's a reason your muscle is misbehaving. You don't just treat the muscle. You look at the joint that muscle is supporting: is that joint loose? Is it subluxing? Is it misaligned? You work on the joint, stabilize it by whatever means, and the muscle will let go automatically. Rather than sticking needles in it or doing deep tissue massage and all sorts of things — you don't want to do that. That's going to damage the tissue much more.
[33:25] There's one caveat: if the pain is excruciating and you need temporary relief, you can do something about it. You can put some magnesium lotion over it, or even a gentle myofascial release to help loosen up the muscle for the time being — that's fine, it's better than going to the emergency room. But in general, look for the cause of the muscle tightness, which is usually a misaligned or subluxing joint.
[33:58] Now, on the point about muscle relaxants: muscle relaxants is a misnomer. There are no true muscle relaxants we use in general practice. The only true muscle relaxants we have are what you use in the operating room, Linda — and trust me, you don't want to use those.

[34:13] Dr. Linda Bluestein: We're not going to use vecuronium or succinylcholine or anything like that.

[34:18] Pradeep Chopra, MD: Exactly — those are paralyzing agents. Drugs like tizanidine, Flexeril, or Soma are not muscle relaxants. They are drugs that lower the tone of your muscles. If you have a muscle spasm in your calf and you take some Flexeril, it's not going to fix that spasm. What it's going to do is put you to sleep, and then the muscle will let go. But it doesn't do anything to directly release the spasm.
[34:53] There is one exception — a drug not classified as a muscle relaxant. It's one of my favorites for muscle cramps and spasms, and it's called carbidopa — marketed under the name Sinemet, a combination of carbidopa and levodopa. I discovered this years ago when I came across literature showing that patients with chronic muscle pain have low dopamine levels in their brain. So I said, if you have low dopamine levels and chronic muscle pain, I know a drug that can increase that dopamine level — why not try Sinemet? We did try it and got really good results. Half a pill, a full pill — it does help with muscle cramps and pain.
[35:44] But in reality, there is no true muscle relaxant for general use. Another option is magnesium lotion applied topically, which makes a huge difference. We — EDS and non-EDS patients alike — are chronically magnesium deficient. You cannot even reliably check magnesium levels from a blood test because magnesium tends to hide in bones and muscles, so a blood magnesium level won't tell you the true level. But we all tend to have low magnesium. It could be that we're not eating enough green leafy vegetables, or that what's grown is grown hydroponically and not getting enough magnesium. I don't know — that's guesswork. But when you increase your magnesium, oral magnesium does not work as well as topical. Magnesium lotion applied over the muscle cramp area should bring some relief within a few minutes.
[37:21] There is one particular brand that also contains caprylic acid — which is grapeseed oil — and that helps with pain. The only company I know that makes it is Ancient Minerals. They have a few different formulations. Just get the lotion — don't get the oil; the oil is kind of irritating. Apply it and it makes a huge difference. This goes for both EDS and non-EDS patients. Oral magnesium does not absorb well, and if you take too much trying to get some absorbed, you end up with diarrhea — so it's not worth it.
[38:19] The other magnesium form you can use is Epsom salt. Epsom salt has a lot of magnesium in it. Do you know where the word Epsom salt came from?

Dr. Linda Bluestein: No, and I've always wondered that.

[38:26] Pradeep Chopra, MD: It came from a little town in the UK called Epsom — that's where it was first produced, or I suppose first discovered. I always thought it was an acronym or something, and then I discovered it's simply named after the town in the UK. Anyway, I digress. Two large cups of Epsom salt in a warm bathtub, and you soak yourself in it. Don't wash it off afterward — don't take a shower after you've come out. Just let it dry on you. That's magnesium for muscle cramps and muscle spasms.

[39:09] Dr. Linda Bluestein: That's a good hack too. I think a lot of us already use Epsom salts, especially in the athletic community, but it's a great tip to not wash off afterward and just leave it there.

[39:28] Pradeep Chopra, MD: There's one small warning on that. If you have a dog, keep them away from you, because they're going to lick your legs to get at that magnesium. Keep them off. But also, if you don't have a bathtub, you can put a few drops of water in the salt, make a little paste, and rub it over your legs — that'll work just as well.
So, coming back to the shoulder joint — remember I said there's a big joint called the glenohumeral joint, the ball and socket joint, and then you have the tiny joint where the collarbone meets the shoulder joint, called the AC joint or acromioclavicular joint. For purposes of our sanity, we'll just call it the AC joint. This tiny joint lives near the shoulder joint, does get arthritic, does get painful, and like every joint in EDS, it becomes loose. Joints in EDS not only sublux or dislocate, but they also just rattle around without necessarily subluxing.
Now, the collarbone on its outer end connects to the shoulder joint, and on its inner end it connects to the breastbone, forming a joint there called the manubriosternal joint. That is very uncommon, but I've seen a few cases where it's loose and painful.
[41:06] But the problem with the collarbone — and this is where I want to talk about a condition called thoracic outlet syndrome. The symptoms are upper back pain and pain going down the arm to specific fingers. It could be the thumb, the pointer, and the middle finger, or it could be the ring finger and the pinky. It exactly resembles a disc herniation from your neck going down your arm.
[41:41] The reason it does that in thoracic outlet syndrome is that the first rib is a very flat rib that sits just below the collarbone. The collarbone crosses over the first rib, and there is a very small gap between them. In this gap live the nerves that come down from your neck — they slide over the first rib and under the collarbone and go down your arm. This is called the brachial plexus. Along with those nerves, the brachiocephalic vein also goes down your arm, and so does the brachial artery. There are also a few muscles in there. So there are a bunch of structures that live in this small gap between your first rib and the collarbone.

[42:45] Dr. Linda Bluestein: It sounds like — sorry to interrupt — you're saying that thoracic outlet syndrome can sort of mimic disc issues. And so this might be another possibility that people should look at. Is that correct?

[43:01] Pradeep Chopra, MD: Absolutely. I should have completed that sentence — that is exactly what I was trying to warn people about. I've seen many cases where people have had neck surgery based on this presentation. If you take an MRI of anybody's neck, there's going to be something there — there is no such thing as a normal MRI. They look at it and say, "Oh yeah, you've got a disc issue, let's operate." But it's really just thoracic outlet syndrome, and it's common in EDS. It's common in athletes, and it's common in EDS patients. So if you're an athlete with EDS, you're in big trouble.
[43:34] This gap is so small — between the first rib and the collarbone. When I said that on the outer end the collarbone connects to your shoulder joint: if your shoulder joint becomes unstable, that makes your collarbone unstable. When the collarbone becomes unstable, it shortens the gap between the first rib and the collarbone. The collarbone then presses on the first rib, and in that process it squeezes the nerves — the brachial plexus — that go down your arm. That's why they have arm pain.

[44:15] Dr. Linda Bluestein: Does that also happen from the first rib being elevated from increased tension in the musculature — the scalenes or the sternocleidomastoid? Can that contribute as well?

[44:26] Pradeep Chopra, MD: Yes. There are other reasons for thoracic outlet syndrome. As you said, there are muscles connected to the first rib, and when these muscles tighten up they pull the first rib up, which also shortens the gap. In some cases there is an extra rib there, and that extra rib also causes problems — but those are exceptional cases.
The more common cause in EDS is that the shoulder joint is loose, which makes the gap between the first rib and the collarbone smaller, which then presses on the nerve going down the arm. That's thoracic outlet syndrome.
There are three types. There is neurogenic thoracic outlet syndrome when the nerve is being pressed. When the pressure becomes even greater or the gap even smaller, it also presses on the vein — that's called venous thoracic outlet syndrome. And then there is arterial thoracic outlet syndrome, which is extremely rare. The venous and arterial forms are a bit of an emergency because you can get a venous thrombosis and all that. But in my lifetime I may have seen about 20 cases of those. Most are just neurogenic thoracic outlet, where there is nerve pain going down the arm.
[46:06] It's not that hard to diagnose. There are about three or four clinical tests that the doctor can do in the office. There are also radiological tests, including MRI. But here's the thing: they often do the MRI in the normal position, with your arms by your side — your most relaxed position, your position of least pain. You want your arm extended away from you in the position where it's actually hurting, where the space has shortened. That you can only capture with a CAT scan. So you need a CAT scan to do that.
[46:58] The treatment for thoracic outlet syndrome is relatively simple. Let me back up a little bit. When the nerve from your arm travels from your neck, over the first rib and under the collarbone, on its way down to your arm it travels behind a muscle called the pec minor, or pectoralis minor. One of the exams I do in my office is press on the pectoralis minor muscle — and they'll tell you the pain is going down their arm. Normally it should not. If it does, it points more towards neurogenic thoracic outlet syndrome.
[47:50] If I see a patient with thoracic outlet syndrome in my office, I'll do some injections into the pec minor muscle and into the scalene muscles — those are the neck muscles Dr. Bluestein mentioned that are connected to the first rib and can pull it up. Then I see what the response is. If the patient has a positive response, like they come back and say, "Hey doc, it helped for a few weeks and now the pain is back," you know you're on the right track. The next step is to Botox those muscles.
When you loosen those muscles, the gap between the first rib and the collarbone increases. Data has shown that approximately 70% of patients will respond to Botox injections. So the question is: how many insurance companies will approve Botox for thoracic outlet syndrome?

[49:01] Dr. Linda Bluestein: Well, it sounds like it should be a lot.

[49:03] Pradeep Chopra, MD: Zero percent.

[49:03] Dr. Linda Bluestein: Oh my gosh.

[49:05] Pradeep Chopra, MD: Zero percent of insurances will approve Botox for thoracic outlet syndrome. But those who do get Botox, 70% of them will respond to it. That's the thing.
[49:17] Obviously, if you've done all this and they're not responding, then it's time to investigate further — do they have an extra rib, and so on. Then it becomes a more complicated situation. If you have an extra rib or you're not getting any better, then it involves surgery. And as we all know, surgery is generally not a good idea. But this particular surgery is more of a soft tissue surgery — they release the pec minor muscle, release the scalene muscle, and may even remove the first rib to increase the gap. The results are actually pretty good.
[50:04] I haven't seen too many patients with severe enough thoracic outlet syndrome that I've needed to send them for surgery. The one exception is if the patient has started to develop complex regional pain syndrome in their arm because of thoracic outlet syndrome. We'll talk about CRPS and EDS at some point. But for those who don't know what CRPS — complex regional pain syndrome — is, it's a brutal, painful condition. It's rated as the worst pain a person can feel.
[50:43] That would be the only exception when I would say: the Botox isn't working, I've tried it twice, time to go see the surgeon and release that, because their arm is pretty useless due to the severity of the pain. Those are the exceptions.
In the non-EDS population, thoracic outlet syndrome is a common athletic injury, especially in soccer — players get hit hard and land on their hand, and that causes it. So this is something to watch out for.
The take-home point is: just because you have pain in your upper back and neck and it's going down your arm doesn't mean it's coming from your neck. Have it checked by somebody who understands thoracic outlet syndrome. A lot of vascular surgeons know it. Thoracic surgeons know vascular thoracic outlet syndrome. Some physical therapists know it, but not everybody knows how to diagnose it. These are the people to go to for a diagnosis or at least a suspicion.
[51:52] I think that pretty much covers the shoulder. Moving down to the elbow — the elbow joint is a pretty stable joint. It doesn't really sublux or dislocate a lot. Even if it subluxes, it's not a major problem. But what happens is if your elbow joint hyperextends — so if you look at it from the side, it looks like a broken stick — what happens is, this is where I talked about misaligned joints. The joint is not subluxed but misaligned, and because it's misaligned, it causes more of a tendonitis. They'll have pain on the inside of the elbow joint or on the outside, commonly known as golfer's elbow or tennis elbow, but it is more from tendonitis because the joint is somewhat unstable. There is one joint in the area that does sublux, but it usually doesn't cause any problems.
[52:55] Moving down to the wrist, hands, and fingers — this is a common issue in EDS. There is pain there, especially when they use their hands. Before I get into that, I want to discuss a phenomenon called proprioception, or joint position sense. There are sensors in our joints, ligaments, muscles, and skin that inform the brain exactly where the joints are. Based on that, the brain then decides how to balance the body.
For example, when you're walking, you put all your weight on the right leg. Your brain knows that your right leg is on the floor and your left ankle is say three inches above. It sends a message to the right leg on how to balance you.
[53:42] A common example of understanding proprioception is if you have an itch on your head, you can scratch that itch without even looking. Without looking, you can pinpoint exactly where the itch is and scratch it. Your brain knows exactly where the itch on your scalp is and redirects your hand right to it. That's proprioception. We use it a lot on a daily basis. It protects our joints and helps us move smoothly.
[54:31] People with EDS often don't realize, until they're diagnosed, that they have poor proprioception. Their joints are loose, so the joints are not sending signals to the brain in time. When they don't send in time, the brain cannot react fast enough.
[54:54] An example: when walking up the stairs, people with EDS often trip. Every step is supposed to be six inches — by law, all steps have to be six inches. As you lift your left leg to get to the next step, your brain doesn't know exactly where your foot is. You may have moved your ankle only four inches, but the brain assumes you've moved it six inches and makes you take the step — and that's when you trip and fall. That's an example of poor proprioception.
And it's not just limited to EDS. Poor proprioception is seen in the elderly because their joints have been damaged. It's seen after joint replacement surgery. It's seen in athletes whose joints have been damaged. And it's seen in toddlers who have not yet developed their joint position sense.

[56:12] Dr. Linda Bluestein: Proprioception has been linked definitively to hypermobility, and it bears reintroducing and reminding people of this: if your body doesn't have awareness of where it is in space, and we're talking about a joint that has a greater range of motion than usual, it may not be sure where the most optimal position for that joint is.
[56:39] There was a study released about ten or twelve years ago asking people with hypermobility to extend their arms straight out to their sides and then do it with their eyes closed, stopping when they thought their arms were straight out to the side. People with hypermobility had a much larger margin of error — around 23% — in accurately finding where "straight to the side" was, compared to people without hypermobility. As you pointed out with the stairs, this is an everyday issue. It's not just about balancing better for an Olympic event or dancing on a world stage. It applies to everyday life.

[57:22] Pradeep Chopra, MD: Yes. And to cover the stairs issue: the way to overcome that is to visually look at your feet and at the steps. Keep your hand on the railing.
[57:37] Here's the difference between dance and walking. When you're walking, you're not focused on your walking — you're thinking about where you're going or something else. You're not thinking about your feet. When you're dancing, your feet and hands are your main focus. So in dancing, you may not notice falling down or bumping into things as much, because you are very focused.
[58:09] But when you're walking down the street, you may not notice. And this is one of the tests I do in my office: I have patients walk up and down the corridor. At some point while they're walking, I'll suddenly say, "Now close your eyes and walk." And they walk straight into the wall. They have no idea of their spatial sense in space. It's a little scary — we haven't had any injuries, but still.
[58:41] So proprioception or joint position sense is very critical, and we'll cover it again at different points. One of the things about the hand is that when you hold a pen or pencil to write, children and adults with EDS tend to hold the pencil really, really tight because they're not getting adequate signals from their knuckles. The brain overcompensates by making them grip very hard. They may even hold it in a very different way — wrapping three or four fingers around a pencil differently.
[59:26] The other thing they do is press down hard when they write. That's called haptic feedback. When you press hard, you get a sense of where you are — the scratchiness of writing with a pencil on paper is haptic feedback. That's what iPhones have: when you press the button, you get a little buzz. Signal received. They don't get that haptic feedback naturally, so they don't exactly know how tight they're holding their pencil and overcompensate by gripping very tight.
[59:59] There are two issues with that. One is that they're making their tiny hand muscles work harder than needed. You don't really need a lot of energy to hold a pencil, but these kids — or even adults — are holding it very tight and using their muscles a lot. Number two: the finger joints are lax, and in order to hold something you need to make your fingers rigid. They have difficulty making fingers rigid because they are lax. So they hold it even tighter.
[1:00:32] Eventually, kids or even adults will complain of hand pain after writing, cooking — chopping food, stirring, or any work with the hands, like artists — they'll find their hands start to hurt after some time. It's mostly muscle pain.

[1:00:55] Dr. Linda Bluestein: That's a great point. That's one of the things I use as a tool when I'm doing an intake for a new client: how do you hold your pencil? Do you enjoy writing physically? It was a new area for me to learn about. One of my kids went through occupational therapy for hands and grip issues, and I learned that the way people hold their pencil — and of course nobody can see this because it's a podcast, but if you're hypermobile you can really hyperextend those joints, which doesn't feel good. So then you start to change your hand grip and do different things to try to make it feel better.
[1:01:40] I read an article just a few years ago where a medical professional was saying, for people with hypermobility we need to look at their writing skills and their fine motor skills with their hands, because a lot of them are being done a disservice by not looking at that. Because we're copers, we're adaptable — we figure out how to make it work. If your purse pulls your shoulder out of the socket, you figure out a different way to hold it. We're nothing if not flexible.

[1:02:11] Pradeep Chopra, MD: Bring your shoulder to your ear?

[1:02:14] Dr. Linda Bluestein: Yes! When I was carrying a purse in New York and it literally pulled my shoulder out of the socket, I would just put the purse on my shoulder and hold my shoulder up by my ear to help carry it. And I was like, why doesn't everybody do this? And then you have a whole host of other issues from that. Compensatory strategies — I feel like we could win Olympic medals for our compensatory strategies.

[1:02:38] Pradeep Chopra, MD: Yes, that is true. So when it comes to holding a small object like a pencil, firstly in kids — if they're holding the pencil in a quote-unquote weird way, do not correct it. There is no normal way of holding a pencil, there's no handbook on holding pencils. As long as the job is being done, let them do it. They've discovered that's the best way for them. If they need four fingers to hold a pencil, so be it. Don't make their teachers try to correct it to the "right" way.
[1:03:16] The second thing is they do press hard and hold their pencils very tight, and that's the proprioception issue. So how do you correct proprioception in this case? First, if they have hypermobility of their fingers, correct that. You can get ring splints that literally look like rings and you put them around the loose joints. You only need to do that for three fingers: the thumb, the index finger, and the middle finger. The other two — the ring finger and the pinky — don't really do much. For these three fingers, just make sure the loose joints are stabilized with ring splints.
Once you've done that, look at the writing instrument. You can get a thicker version, or you can get rubber grips that go on pencils to make them thicker, so that when they're clamping onto the pencil they're not clamping onto something very hard. You can buy those at any store. Occupational therapists often have something for that as well.
For the non-writing portion — say you're cooking, chopping food, stirring — buy knives, ladles, or spoons that have a thick, big handle. The only company I know of that does that well is OXO — O-X-O. Very popular. You can get them at Target, on Amazon. They make kitchen utensils in a very intelligent way: the handles are very big, very thick, and soft. That's another way to work around it.
[1:05:36] If you're doing something else — gardening or other activities — you can wear a fingerless compression glove, and that helps also. They're often sold as arthritis gloves. When the brain isn't getting signals from the joints about their position, it uses the contact of the fabric over the skin of the joint to figure out where the joint is. When you wear a glove and it comes in contact with your knuckles, that tells the brain the position of the knuckle. That helps people — or rather, the brain — understand where your joints are at any given time. This would come in handy for non-writing, non-cooking things like painting or yard work.
[1:06:41] By the way, this concept of proprioception had not been definitively proven for a very long time. We knew it was a problem, but it was eventually proven in 2021. The person who did that actually received the Nobel Prize. We knew proprioception existed, but couldn't really prove it definitively. He was the first to prove it, and he's at Scripps in California — he shared the Nobel Prize for Physiology for this work.
[1:07:18] Anyway, for the hand: you can either wear a fingerless compression glove or stabilize the joints on your fingers with ring splints. I just want to touch on the ring splints briefly. There is a company that makes them.

[1:07:35] Dr. Linda Bluestein: Isn't it Silver Ring Splints?

[1:07:36] Pradeep Chopra, MD: Silver Ring Splints — yes. They're kind of difficult to work with. They have their own measuring method and it's hard to work with them. Let's leave it at that. There are some creative EDS patients who make them at home. One that I know of — let me think — is Zebra Splints. I believe she's on Etsy and also on her own website. The advantage of going to a person like that versus a company is that these ring splints need constant adjustment as you grow or as your hands change shape. If you have a relationship with the person, they can adjust it again and again.
[1:08:35] So, ring splints stabilize your fingers. Wearing a big hand brace has two downsides: one is that braces don't really do a good job, and two, they get very sweaty and are hard to wear. Plus they look really ugly. Listen, there is an aesthetic value to this, and you cannot tell a teenager to wear an ugly hand brace — but you can convince them to wear a ring splint. You don't even have to convince them. One look at it and they're all for it. But if you say, "I need you to wear this leather thing and strap it up and tie it up," you're not going to get any compliance. You have to look at non-medical compliance factors.
[1:09:32] Anyway, the bigger problem with the hand is usually with the thumb. The thumb is not a very stable joint in some forms of EDS, and you'll often see thumb issues. There's also a tendon that goes to the thumb — if you look at your hand with the thumb up, it's on the edge of the hand and wrist. That tendon gets inflamed in a condition called De Quervain's. In that case, just stabilizing the thumb makes a difference. These are the kinds of issues you can have with your arms.

[1:10:15] Dr. Linda Bluestein: What about the radioulnar joint? I've definitely run into people who have that sublux easily, especially the ones who say, "Please don't pull on my hands because I can feel it slide in and out."

[1:10:33] Pradeep Chopra, MD: Yes. You're talking about the distal radioulnar joint. The wrist is made up of two bones at its end — the radius and ulna — and they meet at the wrist. Oftentimes that joint splits open. That's the only place you would want to wear a brace to keep it in place. It doesn't have to be a big brace — something as simple as an elastic brace that holds it like a wristband, like what tennis players wear, might be enough. But avoid separating the radioulnar joint.
[1:11:23] The way you can do that — I'll give you an example: when you're brushing your teeth, you've got the brush in your hand and you rest your other hand on the sink putting all your weight on it. That's where the radioulnar joint splits. That's the best example I can give you right now.
[1:11:46] Surgery does not help because you need some movement at that joint. There's a reason that joint exists — you need movement there, however slight. If you fuse it with screws, it's not going to help. In fact, it's going to make things worse, because that pressure is then transmitted to the elbow where the radioulnar joint meets up again.

[1:12:11] Dr. Linda Bluestein: And that's another great example of why prevention is so important — educating children, or parents. If your child already seems loose and hypermobile, don't grab them by the hands and swing them around. You can dislocate their shoulders, elbows, wrists, all the fun things. Be careful and don't get to the point where it starts to slip out.

[1:12:30] Pradeep Chopra, MD: And while we're on the topic — no party tricks.

[1:12:40] Dr. Linda Bluestein: Dr. Bluestein is cheering you on right now.

[1:12:40] Pradeep Chopra, MD: No party tricks. Just make it sound serious. One of the problems is when patients with EDS go to a doctor who has probably never seen EDS, gets all excited, and says, "Hey, show me what you can do" — that's when you say, "No, I'm not going to show it to you because it's not going to help me in any way. It's just going to entertain you. I'm not doing it." Because remember, stretching your joint will stretch the ligament and that's going to damage it forever.

[1:13:12] Dr. Linda Bluestein: And I think this is where Dr. Bluestein has a hack of her own for that topic. Yes. My hack: when I'm evaluating patients, I have them show me, or I'll say, "Do it at home one last time, have somebody videotape you, take pictures, whatever. Store those in a secure place, email them to yourself so you can find them easily." That way you have documentation, because later on when you have historical joint hypermobility and your Beighton score is 0 or 1 or 2, you can at least have that documentation on hand.

[1:13:14] Pradeep Chopra, MD: Yes.

[1:13:58] Dr. Linda Bluestein: So that the doctor says, "Show me," and you're like, "Yes, let me get out my phone and I will show you," rather than doing it ten times.

[1:14:02] Pradeep Chopra, MD: You know, even with the Beighton score, I get really leery about performing it. Sometimes I'll ask, "Can you do this?" And they'll say yes, and I'll take their word for it, because it makes me very nervous to perform these maneuvers. For the thumb — where you have them push it toward their forearm — I'll just do one side and if they say it's the same on their left, I'll take their word for it. I try not to do it. And I think—

[1:14:42] Dr. Linda Bluestein: Oh, good.

[1:14:43] Pradeep Chopra, MD: No, go ahead.

[1:14:44] Dr. Linda Bluestein: I was going to say, the challenge with the party tricks is when I've had people bend back the fifth finger for the Beighton score, and some can literally touch the finger to the back of their hand. Sometimes I'll scream a little and say, "What?!" And they say, "That doesn't hurt." The difficulty is it doesn't hurt. It doesn't hurt until it does, right? That's why we're trying to encourage people to be thoughtful and proactive.
[1:15:16] I sure wish I had worn ring splints before I got a lot of arthritis in my fingers. I had difficulty getting them to fit. It can be really hard to do those things, especially if something's not hurting. Pain is a really good motivator — if something is hurting, we can be very motivated to make change. But if it's not hurting, somebody can tell us till the cows come home and it can be really hard to make any change.
And as Jen pointed out, with her dancers it's the ones who have already been injured who listen to her the most and take her advice. The people who take an injury prevention class are the people who have already been injured.

[1:16:00] Pradeep Chopra, MD: Right.

[1:16:02] Dr. Linda Bluestein: Because people think it's never going to happen to them. And I'm sure if we offered a hypermobility injury prevention class, the people who would show up would be the ones who had already had dislocations, who were already experiencing pain and didn't want it again. But up until that point, you're like, I feel great, I'm funny to my friends, I'm a really good baseball player or rollerblader or whatever. And then once you've experienced it, you don't want to experience that again, and that's when you start trying to address it.

[1:16:39] Pradeep Chopra, MD: And that's what approximately 6,000 motorcyclists in the United States thought — that nothing would happen to them — until it happened. Every single year, approximately 6,000 motorcyclists die in the United States.

[1:16:56] Dr. Linda Bluestein: 6,000? Or are there more zeros on there? Because 6,000 honestly sounds low.

[1:17:02] Pradeep Chopra, MD: 6,000. As compared to the number of people who died during 9/11, which was about 3,000. And yet we all think motorcycles are cool. Until it happens.

[1:17:29] Dr. Linda Bluestein: Some of us don't.

[1:17:29] Pradeep Chopra, MD: Until they have to scrape you off the road. So, we talked about the arm and hand, and I'm pretty sure as soon as we sign off from the podcast, I'll remember a few things I forgot to tell you — which we will cover in the next podcast.

[1:17:49] Dr. Linda Bluestein: And if that happens, we will pop you back in for another little mini conversation. Maybe we'll throw it up on our YouTube channel. You never know where Dr. Chopra is going to show up for a guest appearance.
[1:18:03] Today's conversation was such an important one because, as you pointed out at the very beginning of this discussion, the upper extremities are the part of the body we use the most for our everyday life — for cooking and feeding and getting dressed and moving and doing work and all those sorts of things. It's really important to understand some of the common things that can occur for people with hypermobility, and ways to pursue relief or even better, prevention, for those issues.
[1:18:33] We really appreciate you taking the time to dive into these topics with us, Dr. Chopra. We are so grateful for your expertise on this subject.

[1:18:42] Pradeep Chopra, MD: Thank you. And thank you for inviting me.

[1:18:45] Dr. Linda Bluestein: Absolutely. We always enjoy having you. We do, most certainly. And we look forward to seeing everybody next time on the Bendy Bodies Podcast.
[1:18:55] Thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD Podcast. Help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast. This helps raise awareness about these complex conditions. Visit bendybodiespodcast.com and follow us on Instagram @bendy_bodies. We love seeing your posts and stories, so please tag us using #BendyBuddy. You can also find me, Dr. Linda Bluestein, on Instagram, Facebook, Twitter, and LinkedIn, all with the handle @HypermobilityMD.
[1:19:31] This podcast is for general informational purposes only and does not constitute the practice of medicine or other professional healthcare services, including the giving of medical advice. No doctor-patient relationship is formed. This is not intended to be a substitute for medical diagnosis or advice. Do not disregard or delay obtaining medical advice for any medical condition you have. The opinions shared are those of the guest and do not necessarily represent the views of the hosts or any particular organization.
[1:19:59] Thank you for being a part of our community, and we will catch you next time on the Bendy Bodies Podcast.