bent wrist and loose joints

Costochondritis and Ehlers-Danlos Syndrome

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome is a set of rare inherited conditions that affect connective tissues which provide support in skin, organs, ligaments, tendons, blood vessels, and bones. Also referred to as Hypermobile Ehlers Danlos Syndrome (HEDS) this disorder is caused due to defects in the protein collagen.

People with Ehler-Danlos Syndrome have loose and unstable joints that dislocate easily and their skin is stretchy, fragile, and bruises with minimal effort. Their wounds heal slowly and they experience extreme tiredness and overall musculoskeletal pain. The causes of EDS are unknown and it’s more regarded as an inherited disease rather than a disease you develop with time. There is no specific treatment for this disorder but it’s possible to manage the symptoms.

What is Costochondritis?

Costochondritis is an inflammation of the cartilage connecting the rib cage to the sternum. It causes chest pain that can range from mild to severe. The pain from costochondritis might seem similar to heart problems, but it’s not related. It usually resolves on its own, and there are a variety of treatments for costochondritis available.

Ehlers-Danlos Syndrome and Costochondritis

Ehlers-Danlos syndrome and costochondritis are closely related as both of these issues stem from weak and painful joints. Many people who suffer from HEDS also report pain in their chest area which is often confused with heart problems. It is quite common that people who have HEDS also have costochondritis because of how these conditions go hand-in-hand.

Costochondritis along with erythromelalgia, fibromyalgia, psoriasis, and Raynaud’s disease was more common to appear in people who were experiencing Ehlers-Danlos Syndrome than in the general population of the US. Both costochondritis and HEDS patients can suffer from similar symptoms such as musculoskeletal pain, weak joints, and overall fatigue.

Back pain and arthralgia (joint aches) are overlapping complaints from patients struggling between HEDS and Costochondritis. Further imaging studies also showed inflammation to be common between both conditions. While many conditions such as costochondritis are associated with HEDS, the underlying mechanisms between as to why these happen and how a genetic problem due to HEDS can cause these conditions are still unknown.

Is there a link between HEDS and Costochondritis?

It is estimated that 1 in 5000 people have a form of Ehlers-Danlos Syndrome. There are a number of anecdotal accounts of people experiencing HEDS as well as costochondritis.

In one article published by the Texas Medical Center, a woman named Sarah describes experiencing both conditions. Sarah was an active athlete and participated in many activities during her youth but now she hesitates to pick up even small weights. She described living with HEDS as like:

“Imagine building a house out of rotting wood, rusty nails, and less dense concrete; this is what it is like to have a body with EDS” 

Sarah goes on to describe how HEDS has affected her whole body and devastated her energy levels, taking over 39 pills per day for her conditions. She describes commonly experiencing pain in her hips, neck, hands, and chest/ribs (costochondritis). She also describes a family history of HEDS, with various family members being subsequently diagnosed after her initial diagnosis.

In another online story shared on Inspire.com, a mother, Suespa, shared information about her daughter’s condition, who also had EDS and costochondritis, shared:

“She has had this now for 5 months and the pain is now constant and interferes with school, sleep and other activities. We have tried ibuprofen (but she gets sick in a lot of meds), rest, warm compresses and hypnotherapy (which had a great effect but only lasted a few hours).”

Many other users on the aforementioned Inspire.com posted comments in response, indicating their similar experiences with Ehlers-Danlos and costochondritis. It would certainly appear that there is a link between Ehlers-Danlos and costochondritis, based on so many experiences – and it makes sense. HEDS affects the joints, making them weak, loose, and painful to move. The line of thinking, similar to proponents of the Backpod, is that costochondritis involves the costovertebral joints in the back where the ribs are connected to the spine. As these joints are affected by HEDS, they may cause costochondritis. Several commenters on the Inspire.com post mention additional problems with slipped ribs.

While there are many anecdotal accounts around the internet of people experiencing both costochondritis and HEDS, there is no definitive scientific link between the two conditions and little research has been done in this area. However, given that HEDS affects the joints and cartilage throughout the body, and costochondritis is caused by an inflammation of the cartilage, it would certainly not be surprising to find that these two conditions are related. Though costochondritis pain and symptoms are limited to the chest, the treatments for costochondritis and HEDS are actually quite similar.

If you are experiencing the symptoms of costochondritis and experiencing problems with loose joints, fatigue, or other musculoskeletal pain in your body, it may make sense to visit your doctor and ask about Ehlers-Danlos syndrome.

Have you been diagnosed with HEDS, costochondritis, or even both? What has your experience been? Feel free to leave a comment below.

20 thoughts on “Costochondritis and Ehlers-Danlos Syndrome”

  1. I’ve been diagnosed with Costochondritis and I suspect some type of hypermobile syndrome as well…. going to ask my doctor to refer me to necessary specialists.

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    • Hope you found a doc but if you haven’t, you need to see a geneticist. Referrals to rheumatologist are the go to but it’s rare that a rheumatologist knows enough to actually help people with EDS. Also don’t get discouraged with the long wait times

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  2. I was diagnosed with costo after “heart attack pains” at 17. I was going to the doctor with severe pain and being sent to hospital for EKGs etc. They just called it inflamed rib cartilage at the time. I didn’t know this was the first symptom of h-EDS, or EDS type 3 as I was diagnosed with years later. As I get older and my joints more loose/weak the costo is much worse. I used to be able to get some sleep by lifting an arm above my head to stretch the back rib joints and loosen the front ones. Now any attack leaves me in hospital because it’s so painful I get pneumonia from shallow breathing. I have passed out from having hiccups because the rib pain is so bad. I was offered costochondral joint injections but told it was a temp fix. I have a similar problem with ankle, knee and hip joints in that I was told any surgery is a temporary fix. So instead I was given a wheelchair. Then do fix the costocondritis problem my wheelchair was taken away and replaced with a powered chair so I don’t inflame my ribs by pushing. I can’t lift anything heavier than a kettle now or I get twinges. I tried a back pod and it hasn’t helped. It also doesn’t help that a lot of people with EDS have MCAS as a secondary condition and are allergic to NSAIDs like ibruprofen which in most people would relieve the swelling. I take morphine and use heat pads but it doesn’t help much.

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  3. Hello, I can relate very well, I was diagnosed in my 50th with Ehlers-Danlos , Syndrome, Dysautonomia and MCAS and in my 40th with Severe and Chronic Costochondritis. In my 30 I was diagnosed with FibromyalgiaI’ve. I’ve had 2 TIA (mini strokes) and I’m in constant severe pain, can’t sleep because of the pain, so I sleep whenever I can and I try to manage as best as I can. My legs and my feet are getting really bad, they are no longer supporting me as they use to and my Podiatrist informed me that eventually I will end up in a wheelchair. I use to be so so active and now I barely can move and though this is very depressing I have to continue pressing on, because I can’t let these conditions take me down, I am more than my medical conditions. My Doctors are awesome but they just want me to take pain medication, and I refuse to feel like a zombie all day because I’ve been through that before. When I read about how others are feeling, though I feel sad because of what they are going through, at least I know that I’m not alone and that my pain is real not an imagination, like I have been told before. So hold on, we are not alone, we are more than our conditions 🙂.

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  4. I’m 24 and I got diagnosed in 2015 with EDS after a dislocation. I’m non-binary transgender, so I also use a chest binder (which I started doing around 2018). I experienced chest pain after a prolonged period of wearing a binder, and decided to take a break. My mother is a doctor, and we think my costochondritis was caused when I stopped binding, as it was ‘holding it together’ so to speak. I very rarely wear a binder now as I don’t leave the house as much due to the pandemic, but the chest discomfort and breathing problems haven’t really gone away.

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  5. Omg…my docs are clueless. Even when I try to educate them they dont understand. Along with severe arthritis in hips ,back ,shoulder, hands, the “normal” EDS pain is too much. People with EDS tend to get early onset osteoarthritis which fitst started showing in me in my teens. Not diagnosed till 50 because my teen niece was diagnosed…then my life and issues finally made sense. The rib pain is a new thing for me and it stuck me that i also sleep with my arms above my head to relieve the pain. My niece has the costochondritis and i wonder if thats me too. I also am allergic to ibuprofen…makes my face swell. Naproxen makes my body break out in hives…and i mean it looks like 1000 mosquitoes bit me. A specialist is what i need to help my GP treat me. I would think a GP would want to learn as much as they can to help me but doesn’t seem to be the case at my health center. Wont name names. And they want ro give me steroids although for the 100th time i told them NO for an EDS patient. Its nuts! For the last time my pain is not in my head!

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    • I can relate to so much of what you have said! So many doctors and health care workers have never heard Ehlers-Danlos & yhere are several forms of it. Nor do they careto educate themselves on this condition which has been my experience. Alot of them do not believe what you say you are going through or take you seriously. And when you have complaints they send you for some tests if they turn out ok i think they think you are crazy and don’t try to figure out the cause, which i feel is due to Ehlers-Danlos. This causes alot of issues and i feel the older i am getting it is getting worse.

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  6. I was diagnosed with costochondritis years ago after complaints of chest pain. When they reappeared 5 years ago, I insisted on a stress test which came back perfectly fine. The pain has never fully gone away. Everything I read said that it should only last for weeks, while I’ve had issues for 12 years. I was just diagnosed with hds a few months ago, and I’m still fumbling through finding the right care. I’m also very large chested. I thought it was cancer, but mammograms also are clear. I think all of this is related, and I’m in desperate need of some relief.

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  7. I’ve had costochronditis since Feb , diagnosed with EDS vascular and another subtype, my young son got croup and I ended up with bronchitis on top of Costo , biggest issue is weight .
    I’ve already lost 10 kilos since I got costo in Feb 2021 and when I eat it’s worse … I’m so thin it’s disgusting and the pain is unbearable… I’m in a rural location and no friends or family for 1000kms away ! My older adult kids are in other states and due to Covid it’s been extremely hard for them to come up and help me …, so I’m hoping my body heals this infection soon so I can eat .., does anyone else get stomach and abdominal pain like a squeezing righting pain ..,, at least I’m not alone !! 46 years old and already feel like I’m 120 yrsold . Can’t use my cane or brace etc with this costo so it’s bedrest but laying on my stomach and relief only from a heat wheat pad .., Pls share our stories Ehlers Danlos Syndrome needs more awareness for the lay person . My husband left me due to my health, yup couldn’t cope watching me be in pain …

    Reply
    • Go to Ehlers Danlos support group on Reddit it’s the best there is. Everyone can help you as we are all the same – mostly like 75% at least and we all have accompanying comorbidities that some people don’t know about so you can see it all there. Everyone is very nice and knowledgeable.

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  8. I was diagnosed with Costochondritis well before I got my diagnosis with HEDS. Having the EDS diagnosis helped me understand what systems in my body can get injured easily so I make changes in how I move and approach physically demanding movements. I’m still working to get off the opioids but get an epileptic type response any time I try to go off them. They helped me keep from being bedridden with pain though and continue to work daily so we try different meds to help try and get me off them. Neurological Physical Therapy has helped the most though and I recommend everyone with EDS try it if you can. It has helped me stay off my cane most of the time and lessened the amount of really really bad flare ups. Regular physical therapists are going to classes to learn the techniques a lot more than they used to so hopefully it will become more prevalent across the country within the next 5 years.

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  9. 63 diagnosis at 21 been downhill ride since. If I don’t exercise I feel awful if I exercise to much I feel Awful
    I ride horses that motion seems to make me feel good till I dismount then I feel awful
    Live alone which is a curse and a blessing , never sleep a full night up at all hours sick to my stomach or sweating horribly. Today sharp pain in chest for 20 seconds scared me to death , will call doc tomorrow but most likely my ribs
    Never a dull moment with EDS

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  10. My collar bone joint subluxed (SC joint) without trauma – as can happen with Hypermobility. And I experienced increasing amounts of pain in my ribs and upper back thereafter. My assumption was that it was chostochondritis – something I have experienced before. One rib one day and then the next it would be somewhere else. My upper back, around T4, was a constant. It intensified for five months at which point I was hospitalised with serositis of my heart and lungs. Now my doctors and I are trying to prise that all apart! I am just recovered and off steriods and the pain is starting to re-emerge. Very disconcerting. It is likely just muscularskeletal but I frankly can’t tell that apart from the pericarditis and plueritis. Fun. I am now experiencing pain in my upper back on reclining- which is exactly the same type of sensation as produced by the pericardial effusion. How to know if I am relapsing.

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  11. I was diagnosed with von Willebrands Disease at 22yrs and Costochondritis a few months later. The next 25 years were a blur of bleeding episodes that are extreme for bon Willebrands Disease.

    At 46 a specialist moved my “camouflage” out of the way-long hair to cover how thin my face is and layers of clothes to make me look normal. His first words were you have no collagen.
    I have vascular EDS. It gives many explanations for all of the deaths in my dad’s family, including my dad. Unfortunately, there is no cure, the symptoms don’t change because of a title.

    My bone structure is very petite at 5’6″ so my wrists, fingers, ankles and now ribs fracture easily. Costochondritis is a companion. I have learned to run my fingers up and down the cartilage to find the pain before freaking out. Having a blood pressure check at home os also reassuring. The best way of coping seems to be taking it one symptom at a time. As for me, I have lived beyond my prognosis 🙂

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  12. i have fibromyalgia,severe scoliosis(46 degrees),and long covid,ive been in pain for as long as i can remember,im pretty sure i have costochondritis,it hurts constantly,all my ribs hurt when i touch them…what do you guys think?im so tired of doctors,theyve ruled my life since i was a teen,i hate being in agony all the time…yoga helps a little,in canada,strong painkillers (anything with an opiate base)are only prescribed to people with cancer or hiv…im pretty sure i have this problem,and im sick of the pain

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  13. My daughter is chronically ill. Among other conditions, she was diagnosed with fibromyalgia in 2013. She was also diagnosed as being hyper mobile. This has become very much worse, and a GP said it might be Ehlers Danlos, but she’s still waiting for a hospital appointment. She also suffers from costochondritis. I took her to a homeopath and Bowen practitioner, who was amazing and has really helped. She – the practitioner – prescribed a homeopathic remedy called Bryonia for the costochondritis and it works incredibly well. My daughter used to be in agony, now she hardly ever has a problem and if she feels the pain coming on, she takes the remedy. I really recommend anyone with these problems to find a good homeopath. I have severe arthritis and the Boaen treatment plus the homeopathy has helped enormously. Not all homeopaths are Bowen practitioners, and it might be that two separate practitioners will need to be found, but believe me it’s worth it. I really hope this helps.

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  14. I knew I was hypermobile in most of my body (not hands) since childhood. It had caused dislocation problems with my hip replacement. I didn’t realize I had costrochondritis until I forgot to renew my celebrex that I’d been on for years. The chest pain came on so suddenly and up into shoulders that I went to ER thinking it was a heart attack. It wasn’t anything with my heart but they held me 4 days in observation to be sure. They ultimately settled on costrochondritis. Once home, still with chest pain, I got started on the Celebrex again and in 4 days the pain gradually went away. I had not realized the extent the Celebrex was calming the inflammation until this experience.

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  15. I was diagnosed with EDS – Hypermobility type 3 in 2006. As I’ve aged (42 now) I’ve gone from very active – biking, running, swimming, sports etc to being afraid of activity. I’ve sprained my right ankle upwards of 70 times. As time goes on more complications occur. Recently I was diagnosed with costochondritis. I’m still unsure of how I will manage the discomfort/pain.

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  16. EDS types w/ hypermobility is so more complex than researchers first thought of it as localized to “main wt bearing boney joints” Eg: ankles, knees, hip socket joint, shoulders, and jaw. Now we understand the systemic nature of “collagen” as an organ that is not actually just a fibrous outer coating but a “complex network of channels holding and moving its own unique fluid that interacts between the specific organ and the lymph immune system and the and blood system. It’s now referred to as “the Interstitium” with a lot of research into its
    role in all inflammatory conditions and how cancer cells metastasize to other organs.

    I have EDS-h with systemic organs problems and malfunction of small cartilage, tendon, and ligament joints as well as inflammation, mast cell reactivity and now systemic Mastocytosis.

    It’s super hard to be both a patient and a (research scholar/ clinician) healthcare professional that knows more about this mysterious debilitating and progressive connective tissue
    disorder than any “expert” unless they have lived with it, since Day 1 of their lives.

    I feel more like an Octopus than ever- now hiding out, and requiring bed to keep weight bearing joints and vital pelvic
    organs “in their place”😏.

    The 12 Step saying “Live One Day at a Time” is laughable for us that must take life one Breath and movement at a time. This condition inevitably makes “existentialists” out the most driven and energetic planners and goal-setters among us.

    Good thing we only inhabit these bodies and CAN dis-identify our “I am more than my body” Self from the “body as a vehicle” with compassion, kindness, and wisdom. Simple but NOT easy!

    Best to all suffering,
    Dr JK MacTaggart

    Reply

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