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Hypermobility Symptoms: Let's Jump Down The Rabbit Hole

Hello lovelies! My last post went over what exactly joint hypermobility is. You can check it out here; make sure you scroll to the bottom to do the self-assessment to find out if you might have it!

Now, we're delving into what problems can be caused by your joints being too flexible, ranging from neck and back pain to anxiety, headaches and low blood pressure. I hope this brings relief to some as you discover hypermobility might explain some of the weird things your body tends to do. I know my friends and family thought I was crazy for years when I would make comments about being lightheaded upon standing or that I was lazy for heavily avoiding any form of cardio. I will share my personal experiences . I am also a certified yoga teacher so I look forward to sharing my knowledge of how hypermobility affects yoga in the future. Important to note that hypermobility might NOT be the explanation for some of these symptoms, so please make sure to be checked by a medical professional to ensure the true cause. 

As far as hypermobility goes, there are two types of symptoms: musculoskeletal aka joint related and extra-articular aka affecting other parts of the body. I'll split them into those two categories. You might be able to guess some of the joint related problems, but the list of extra-articular symptoms of hypermobility can honestly seem kind of crazy unless you've actually lived it. Dr. Alan Pocinki wrote an amazing paper that I will frequently be quoting because of his fantastic anatomical explanations. I highly encourage reading it too, it was literally life changing for me! I hope this post will be life changing for you! xo 

Now buckle up for the ride as we journey down the rabbit hole of extensive hypermobility symptoms! 


Musculoskeletal Hypermobility Symptoms


Chronic Neck Strain

Source: Google Images 

Source: Google Images 

Neck strain can feel different depending on the person. Burning, stinging, aching, and tightness are some of the sensations. To sum it up though it basically feels like the picture above! Chronic means recurring or persisting for a long time, meaning your neck is getting strained over and over again or if you baby it enough for it to finally heal, it gets reinjured quickly. The most common way to strain your neck is by looking down - a motion we're guilty of doing multiple times a day just looking at our phones! The forward tilt of our head increases pressure on the neck thanks to gravity. The average human head weighs 10-12lbs, so just imagine the strain our necks go through when the weight of our heads isn't perfectly aligned! Thankfully, the graphic below illustrates exactly what happens: a 60 degree tilt adds 60lbs of pressure on your neck! No wonder your neck hurts after staring at your phone for so long - hypermobile or not!

Remarkably, this process occurs so gradually that many people with JHS do not even notice it, and when asked they may say, “My neck is fine,” when in fact their necks are a mass of knotted soft tissue, soft tissue that does not feel soft at all!
— - Dr. Pocinki
Source: Google Images 

Source: Google Images 

I was miserably caught in the vicious cycle of neck pain. Most mornings I would wake up with a stiff neck to begin with. Then I would start experiencing burning pain while sitting at a desk at work, which would gradually get worse throughout the day in the back of my neck and shoulder (scapular region and sometimes radiating to the front of the pectoral region). The burning would eventually morph into a pulsing pain which would cascade into a headache that would rapidly turn into a full-blown migraine where I was sensitive to light and sound if I didn't take anti-inflammatories immediately. By the end of the day, I was desperate to escape to my bed to give rest to my throbbing head and neck. It was so frustrating though because it didn't seem to get better when I woke up! Some mornings I would even wake up with a massive "knot" in my neck and an accompanying headache or a pulled muscle in my neck or scapula. All of the strain made it insanely easy for me to pull my scapula; it felt like I was doing it every other week. If I was lucky, it was mild but sometimes I would pull it to the point where it was extremely physically painful to turn my neck or even move my body to lay down - writhing and screaming in discomfort to try to find a comfortable position to lay in.


Chronic neck strain is what I learned was the cause of my constantly pulled neck muscles and tension headaches. My neck ligaments were too loose and weak to support my head. Cumulative hours of sitting unsupported and looking down caused tension on my neck and shoulder muscles. Loose shoulder sockets were another factor contributing to the strain. The ball of my upper arm wasn't tightly held into the socket of my shoulder. This weakness causes any activity that uses the arm (like reaching, pulling, carrying) to put more pressure on the neck and shoulder. Weak neck muscles and loose shoulder joints cause the muscles to be constantly strained and what little healing may occur overnight is promptly undone the next day.

For me though, I wasn't even giving my poor neck a chance to heal while my body was resting! I was doing damage to my neck while I was sleeping without even realizing it by falling asleep with my head propped up on too many pillows. They would force my head to be at an angle that would put stress on my neck while I slept. It finally made sense why I was waking up with neck pain. Since that realization, I rarely sleep with a pillow under my head anymore and instead use it to prop up my shoulder or hips as I'm a side sleeper. It also doesn't help that another related symptom is poor sleep (more on that further down) so your body is already at a resting disadvantage. 

It is a relentless but slow, sneaky problem that creeps up and before you know it, it feels like you're stuck in an unbreakable cycle of heating pads, ibuprofen and muscle cream. Tiger balm is one of my very best friends. 


Back Pain 

Just like in the neck, for people with JHS, the ligaments that support and stabilize the spine and pelvis are usually too loose, putting extra strain on muscles to try to support the entire upper half of the body when sitting or standing. The strain leads to pain and constant strains turn into chronic pain. Are we noticing a pattern here? It's super important to get to the root of your strained muscles before they turn into chronic problems! 

Most people with JHS typically experience back pain in their mid or lower back. My back pain tends to be in my lumbar spine - the mid back region. I have intense hypermobility in my back, allowing it to bend at pretty much a 90-degree angle exclusively in the lumbar region. The flexibility allows for a super cool defined backbend shape, so I was constantly in a wheel pose or standing backbend for photos or to show my friends. This was before I was trained properly on how to backbend and I didn't realize that although my body was flexible enough to allow me to perform these gnarly backbends, it also wasn't prepared to perform them correctly - simply because it was lacking muscular strength. I could easily drop back into the backbend which meant I never had to properly engage my muscles. This led to me pretty seriously injuring my back quite a few times and is one the reasons why it's SO important to properly learn how to perform a posture. Just because your body can make the shape doesn't mean it should, and doesn't mean you're engaging the correct muscles if you do find yourself there. Nothing is wrong with completely avoiding or taking certain yoga poses out of your practice while you're working on healing your hypermobility. I didn't backbend or practice yoga for over three months while I focused on strengthening my muscles. I also modify the hell out of some poses, not because I can't perform the full expression but simply because it's more beneficial for my body not to. It's definitely an ego check. Remember yoga isn't about the crazy shapes you can make, it's not worth doing something that hurts your body in the long run!

My 90 degree backbend - Photo by Don Jay 

My 90 degree backbend - Photo by Don Jay 

People with JHS do have an increased tendency to have disc problems, sometimes at an early age, because the intervertebral discs that help cushion and support the spine may be less rigid than normal. Softer discs are more prone to leak or rupture, allowing disc material to ooze out of the disc and pinch nearby nerves, causing pain. Disc problems in the neck cause pain down the arms, and discs in the lower back cause pain to be referred to the legs. Less often, tissues within the disc itself can break down, causing pain within the disc, which can be very difficult to treat.
— Dr. Pocinki

Shoulder + Elbow Pain

Surprise! Pain in the shoulders and elbows is also common with hypermobility. In my experience, the pain begins as a burning or stinging feeling, usually in my scapula or shoulders. If I ignore the slight burning and keep straining it, there's no doubt it will lead to a pulled muscle. The shoulder, as we now know, needs strong ligaments for support, and when the ligaments are loose, there is extra strain on the soft tissues of the shoulder. My shoulders completely lacked any muscle tone, so my scapulas would "wing" up. Gravity and lack of muscle also caused my shoulders to round forward and I started to develop a closed off, hunched posture in my shoulders. Heart openers are definitely the posture I need the most but do the least of, go figure. 

My "winged" shoulder blade - photo by Heather Byington | model Danielle Moulin | wearing Koalani Apparel 

My "winged" shoulder blade - photo by Heather Byington | model Danielle Moulin | wearing Koalani Apparel 

Similarly, repeatedly hyper-extending your elbows can tear the tendons on the sides of the elbow. This one is especially difficult for me because it feels impossible sometimes to not hyperextend in most yoga postures. Micro-bending is your friend with this one! Pain in the elbow area is typically referred to as golfer's elbow or tennis elbow. 


Hip Pain 

Boy oh boy, Shakira was right when she said hips don't lie! The hips are actually made up of  are fascinating because they connect the upper and lower parts of our bodies. They're pretty damn important if you think about it and hip strength makes all the difference in the world when you realize the role hips play in support your spine and legs. 

Unstable hips often cause pain which, like neck pain, may go unnoticed for a long time, since the hip joint does not move around as much as the knee, shoulder, and ankle joints. Examination of the hip in people with JHS often causes them to cry out, “Ouch! I didn’t even know it hurt there.” Also, many people mistakenly describe pain from the back part of the hip joint as “back pain.
— Dr. P

My first experience with hip pain came from overstretching them. Yes, you heard that right - overstretching is totally a thing. There's definitely a thing as too much stretching for a normal person. For a hypermobile person, who is already naturally flexible, stretching shouldn't really be the focus because it is much easier to overstretch. I was misinterpreting tightness I was feeling in my hips and was repeatedly stretching them for long periods of time. After each stretching session, they somehow felt even tighter! That's because the tightness was actually reactive muscle spasms, aka my body trying telling me to stop fucking stretching!!! Well, since I wasn't listening, my body had to speak even louder and my hips completely locked up. Right after a stretching session, I went on a hike with my brother. It didn't even take five minutes for my hips to be completely exhausted and I could barely move my leg far enough to take a step. My stride is usually pretty long so my brother was shocked to look back and see my hobbling like a grandma. This was another time I had to take a break from yoga. 

Demonstrating a very flexible back and hips    Photo by Erica Nebiker | Model Danielle Moulin | Wearing Flow Yoga Wear Leggings, Lululemon Bra 

Demonstrating a very flexible back and hips  

Photo by Erica Nebiker | Model Danielle Moulin | Wearing Flow Yoga Wear Leggings, Lululemon Bra 


Knee + Ankle Pain

Knee pain in hypermobile people is most commonly found in the cartilage between the kneecap and the knee. This happens since the soft tissues that are supposed to hold the kneecap in place are of course loose, so the kneecap itself is often loose too. After years of sliding around too much, the cartilage underneath the kneecap starts to wear down (a condition referred to as chondromalacia), causing pain – and sometimes a crunching or grinding noise – while kneeling, squatting, or doing activities such as climbing stairs, running or hiking. Hyperextending the knees leads to posture problems during development like a tilted pelvis and hollow back. 

Ankle sprains are another common injury due to lax tendons around the ankle. These hypermobility injuries can take an extremely long time to heal since they tend to get reinjured again and again while they are trying to heal. It can also be difficult to pinpoint what movements or postures have the potential for injury without proper knowledge. I've always despised running because it seems like five steps in and I've already sprained my ankle. Usually its an extremely mild sprain, but it's uncomfortable enough for me to avoid it. 


Other Musculoskeletal Symptoms 

I've elaborated on the most common symptoms and those that I've experienced myself. Below is a list of other known related symptoms. . 
  • Unexplained bruises (often appear "out of nowhere")
  • Tendonitis 
  • Neuropathic pain (which may be felt as burning, stinging, tingling, shooting, numbing, etc.)
  • Fibromyalgia
  • Osteoporosis 
  • Osteoarthritis
  • Costochondritis (tightness in ribcage) 
  • Temporomandibular joint (TMJ),

Extra-articular Manifestations of Hypermobility

Problems affecting parts of the body other than the joints are referred to as the extra-articular manifestations of hypermobility. Many hypermobile people complain of dry mouth or constant thirst, often with a craving for salty foods. Lax joints are frequently associated with increased tissue elasticity other places in the body, especially in the blood vessels and digestive tract. They are uncomfortable standing for long periods, so avoid lines and like to sit with their feet up. Recent research has also linked hypermobility to numerous autonomic nervous system problems, such as lightheadedness, palpitations, and digestive problems, and probably also plays a role in difficulty sleeping and overall fatigue. This is where it gets extremely interesting and starts to account for the symptoms that can make us feel crazy!  

I'll elaborate on certain ones further but here's a rundown of some of the extra-articular symptoms: 

  • Anxiety
  • Difficulty falling asleep/getting quality sleep
  • Cold hands/feet
  • Low blood pressure
  • Lightheadness
  • Acid Reflux
  • Delayed Gastric Emptying
  • Irritable Bowel Syndrome
  • Varicose veins
  • Hemorrhoids

Autonomic Nervous System 

The autonomic nervous system is responsible for the body processes that happen automatically, such as heart rate, blood pressure, breathing, and digestion. Most of the autonomic nervous system problems associated with hypermobility are characterized by an “over-response” to physical and emotional stresses, which often leads to fluctuations in heart rate and blood pressure, as well as digestive and respiratory symptoms. Adrenaline levels can also be raised by sickness, pain, emotional stress, and even fatigue. Acute stresses can trigger adrenaline surges, leaving you feeling jittery, anxious, and even more exhausted. Making things worse, those surges can trigger an excessive counter-response, causing nausea, sweating, lightheadedness, diarrhea, and of course even more fatigue. Even sensory stimuli, such as bright lights or loud noises, can trigger an exaggerated or over-response, causing sensitivity to light and sound.


Anxiety

The body’s tendency to overreact to stresses by making too much adrenaline can lead others to think that hypermobile people are “too sensitive,” “irritable,” or “anxious.” Patients themselves may notice this, saying, “I’ve always overreacted to little things. I can’t help it.” It is very important to recognize two things about this phenomenon. First, it is a physical reaction, so that counseling usually will not be effective in treating this type of anxiety. Similarly, adrenaline highs and lows may be mistaken for the mood fluctuations of bipolar disorder, but mood-stabilizing medications usually are not indicated. When medication is required, beta blockers, which block adrenaline, may be as effective with fewer side effects than SSRI’s like Prozac and Lexapro or benzodiazepines like Xanax and Valium. Second, while a feeling of anxiety can be produced by emotional stress, it is just as likely that such symptoms have a physical cause, most often fatigue, pain, or dehydration, and less commonly by a drop in blood sugar or blood pressure. Not surprisingly, researchers have found that anxiety and panic disorder are more common in hypermobile people.
— Dr. P

It took me a long time to realize the difference between mental anxiety (like social anxiety) and the physical anxiety response my body feels as a result of adrenaline spikes. My hands will get clamy, my heart will race, my mouth will get dry. It used to lead me to having an actual anxiety attack because even though I wasn't mentally freaking out, none of those are good feelings to have so I would start to panic about why I was feeling that way. It took a lot of practice to retrain my thinking and response to not react to the physical anxiety symptoms. 

Part of my motivation for getting a Fitbit tracker (besides being fit??) was to track my heart rate to see if I could see my adrenaline spikes! It was seriously the coolest experiment and it worked! Unbelievably, some days my heart rate can be in the "fat burning" range of over 100BPM for over 5 hours! An average day seems to be in the range of  1-3 hours. The odd thing though is I haven't been able to find any correlation between the longer spike days versus the shorter ones. I thought maybe when I'm more active / less active, but that doesn't seem to affect it as there have been times when I'm laying in bed with my heart in fat burning range and my heart pulsing as I'm trying to fall asleep for absolutely no reason.   


Chronic Fatigue / Too Much Adrenaline 

I'm definitely no stranger to the chronic fatigue feeling from adrenaline spikes. It's exhausting, especially when sleep isn't restful either. Using caffeine to give me energy, I got to the point where a triple shot espresso on the rocks didn't even give me a buzz. Adrenal fatigue is what it's called and I quit drinking coffee altogether to try to heal my adrenal glands a bit. 

To compensate for stretchy blood vessels and increased venous pooling (too much blood collecting in over-stretched veins) most people with hypermobility appear to make extra adrenaline, which may account for the high-energy, always-on-the-go lifestyles of many hypermobile people. Unfortunately, if you get too tired, your body responds by making more adrenaline, so you keep going, not realizing how tired you really are. It appears that as you get more and more run down, your body gets more sensitive to adrenaline, so the small amount you have left can produce the same response a larger amount used to, so you still don’t feel tired even when you are. Even when you do feel tired, you may continue to “push through” the fatigue, collapsing when the adrenaline wears off. Years of not feeling, ignoring, or pushing through fatigue may be one factor in the development of illnesses like chronic fatigue syndrome.
— Dr. P

Lightheadedness / Low Blood Pressure

Lightheadedness upon standing seems to be the most common symptom of autonomic nervous system dysfunction in hypermobile people. It's known as postural orthostatic tachycardia syndrome, a fancy name for how the body has trouble maintaining stable heart rate and blood pressure when a person stands up. Dr. Pokinski recommends increasing salt and fluid intake and avoiding caffeine and alcohol, which deplete the body of fluid, to possibly help reduce this problem. It also helps to keep your feet elevated, wear support hose, avoid prolonged standing, and of course the obvious—if you get dizzy when you stand up quickly, don’t stand up quickly!

With too much blood pooling instead of circulating, low or low normal blood pressure is common. This kind of poor circulation explains the symptom of cold hands and feet. Drops in blood pressure can trigger palpitations and racing and pounding of the heart. My hands and feet are permanently cold. I also get extremely cold after I have a meal, because I would assume the blood rushes to my stomach and intestines to help with digestion. I frequently experience the heart racing/palpitations and for years wrongly misinterpreted it as anxiety.


Headaches

Having lax joints predisposes you to many different kinds of headaches. Migraine headaches can happen frequently because many migraines are triggered by fluctuations in hormone levels or blood pressure, which can be increased by autonomic problems. Headaches from chronic neck strain also are very common, like I mentioned in my experience above and can often turn into migraines. In addition, severe autonomic problems can cause a dehydration or “hangover”-like headache, possibly related to inadequate blood flow. I've experienced this type of hungover feeling headache and it's honestly one of the worst things in the world. When I talked about waking up with a headache, this is exactly what it would feel like most of the time (if it wasn't from an actual hangover haha). On the uncommon side, looseness of the muscles that control the eyes can cause difficulty focusing and eye strain headaches. TMJ problems can also cause headaches.


Digestion

Thankfully, I don't experience any of the related digestive problems, but I know they are quite common issues so I'll let Dr. P take it away:

"Hypermobile people often have digestive problems, both in the upper and lower parts of the gastrointestinal tract. The esophagus and especially the tissues around it may be too stretchy, allowing stomach contents to come back up or “reflux” into the esophagus. Because the stomach contains acid, and the esophagus is not meant to hold acid, acid reflux causes heartburn in many people with JHS. Furthermore, frequent reflux can cause serious burning and scarring of the esophagus, even increasing the risk of cancer of the esophagus. A stomach that is overly stretchy can cause food to stay there too long, a condition called delayed gastric emptying, which can cause patients to feel full quickly—and sometimes continue to feel full for many hours--and can also increase the risk of reflux. Autonomic problems can also affect digestion, e.g. causing digestion to occur too slowly or too quickly depending on the situation. Intestines that stretch too easily increase the risk of constipation and bloating, and make gas much more painful. Many hypermobile people are diagnosed with irritable bowel syndrome, a diagnosis that often carries a negative connotation – that the patient isn’t dealing with stress well or is really depressed and won’t admit it – when in fact these symptoms, and their cause, are often physical and not psychological.

Tears of the abdominal wall muscles are another very common problem among people with hypermobility. The muscles themselves do not tear, rather the fibers connecting different muscles do, creating a gap between two muscles. Small segments of intestine can occasionally push up through these gaps, causing pain. As pressure backs up behind this “stuck” segment, pain gets worse and is felt in a larger area, but eventually resolves when the intestine that has pushed up into the layer of muscle falls back into place. The timing of the pain is quite random, depending only on the movement of bowel contents and the contractions of the intestines. The lack of any correlation to meals or bowel movements is one clue to the cause of the pain."

"Unfortunately, these abdominal wall tears usually will not be found on a cursory physical exam, nor on x-rays, CT scans, or sonograms, and most physicians think they are rare and so do not look for them. Depending on where the tears are located, patients may be incorrectly diagnosed with reflux, ulcer, gallstones, ovarian cysts, diverticulitis, and most often, irritable bowel syndrome. Once patients understand the source of the pain, most can tolerate it, or find ways, such as changing position, to relieve it. Surgical repair is rarely necessary, except when true hernias occur, i.e. when intestine pushes through the abdominal wall muscles and stays there. The most important reasons to make this diagnosis are to prevent unnecessary testing and treatments for other incorrect diagnoses, and to reassure patients that they don’t have something terribly wrong that hasn’t shown up in the tests they’ve already had." - Dr. P


Sleep

All that extra adrenaline to compensate for the blood pooling can lead to trouble falling asleep because of it's stimulating effect. If/when you fall asleep, your body can continue to produce too much adrenaline overnight, resulting in a shallow, dream-filled sleep, that leaves you feeling unrefreshed upon waking. I'm lucky that I hardly ever have trouble falling asleep, but it's probably because my sleep is so unfulfilling when I finally do sleep! My Fitbit also tracks my sleep when I remember to wear it to bed and it conforms the shallow sleeping; most of my night is spent in "light" sleep. What's crazy is one night I spent the same amount of time in light sleep as I slept in total another night. Only 19 minutes of deep sleep definitely isn't the most restful almost 9 hours you could ask for. I really can sleep forever just because my sleep isn't restful. 

Pain further stimulates adrenaline, making restful sleep even more difficult. When studied in the sleep lab, they often have a relative and sometimes complete lack of deep sleep, and/or an increased number of sleep-disrupting “arousals.” Poor sleep can cause irritability and fatigue, which in turn can trigger more adrenaline (to try to overcome the fatigue), which in turn can make sleep worse. This vicious cycle can eventually cause serious disability. Like fatigue and pain, many patients are not aware of just how bad their sleep is. Although some people are aware of waking often or of having frequent very vivid dreams, many will insist that they “sleep fine,” even while admitting that after sleeping 8 hours they don’t feel rested when they get up. One obvious reason for this lack of awareness is, of course, that they’re asleep, so they have no way of knowing that they’re not getting enough deep sleep or having way too many arousals.
— Dr. P

Lack of quality sleep can not only make you tired and irritable but can also affect your mood and mental functions like memory and concentration. One possible explanation for the frequent arousals and lack of deep sleep is making too much adrenaline at night, just as the body also often does during the day.

Some patients, unfortunately, seem to make too little during the day, waking tired and dragging through the day, only to get a “second wind” of energy (or a “first wind” for many!) at 9:00 or 10:00 at night, just as they are trying to wind down and get ready for bed. Heart rate monitors showing increased fluctuations in heart rate and occasional sudden increases in heart rate corresponding to arousals and awakenings lend support to this theory.
— Dr. P

You've reached the end of the rabbit hole!

Woooooo. If you're still reading, thanks so much. I hope you learned a thing or two regardless of your hypermobility status! And if you're someone who has been experiencing these things, I hope it finally makes sense of some of your symptoms!

Feel free to leave any comments or questions. I'll try to answer them to the best of my ability! 


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