Joint hypermobility

S

Seanh153

Peer Supporter
Hi all

Today I saw a rheumatologist and she confirmed that I have hypermobile joints. Would this fall under TMS? It seems like there isn't anything I can really do about it, aside from taking painkillers.

I feel reassured that I don't have an injury, and she is arranging an ultrasound scan to rule out any inflammation in my hands, but I'm also a little concerned as this is a lifelong condition that I'm just going to have to deal with.

I do find it strange that I've never had any pain until now, at 30 years old, and that it came on suddenly and has never left for even one day over the course of a year. You'd think with a condition like this I would have had pain at some point when I was younger...
 
It depends.
Some hyper-mobility is genetic, and typically a geneticist is called on to diagnose, but they can be difficult to find.
Non-genetic hyper mobility can be seen as TMS or perhaps just a term used by the Dr. to offer a diagnoses when they really don’t understand what is going on.

Is it TMS?
Have you read any of Dr. Sarno’s books? He describes personality traits of people who typically deal with TMS. https://www.tmswiki.org/ppd/TMS_Personality_Traits (TMS Personality Traits)
Have you looked into the theory of TMS and how your brain creates pain?
Was there a specific incident that brought on pain, and can you remember how you were feeling at that time emotionally? Were you experiencing a lot of stress?
It is worth looking into the TMS aspect, and if you feel some similarity, it can help you decide what path to healing to pursue.
 
Cactusflower said:
It depends.
Some hyper-mobility is genetic, and typically a geneticist is called on to diagnose, but they can be difficult to find.
Non-genetic hyper mobility can be seen as TMS or perhaps just a term used by the Dr. to offer a diagnoses when they really don’t understand what is going on.

Is it TMS?
Have you read any of Dr. Sarno’s books? He describes personality traits of people who typically deal with TMS. https://www.tmswiki.org/ppd/TMS_Personality_Traits (TMS Personality Traits)
Have you looked into the theory of TMS and how your brain creates pain?
Was there a specific incident that brought on pain, and can you remember how you were feeling at that time emotionally? Were you experiencing a lot of stress?
It is worth looking into the TMS aspect, and if you feel some similarity, it can help you decide what path to healing to pursue.
Click to expand...

So genetic hypermobility actually causes pain and thus can't be resolved via TMS?

Yes I've read Sarno's books, but I haven't been able to fully accept that it applies to me in this case (mostly because I've been waiting forever to see specialists - thanks NHS). I do fit the personality traits and I obsess over the pain. I do totally accept TMS as a theory though - anxiety has caused all kinds of issues for me in my life.
 
I was diagnosed with hypermobile Ehlers-Danlos by a geneticist at Mayo Clinic (using the most recent diagnostic criteria). Given that it’s congenital, there are plenty of things outside of my control: subluxations; doughy, velvety, stretchy skin that is difficult to biopsy and has people mistakenly believe I’m in twenties instead of my thirties; skin that struggles with wound healing (one of my tattoos took three times longer than usual to heal; it even had blood-stained scabs after one full month); joints that are not stable and can easily bend in ways that lead to injuries; dysautonomia that can be controlled to an extent with mind-body work but remains active in a big way; blood vessels that have apparently worked differently since I was a baby because my collagen is different; etc.

But like any structural disease, the mind-body connection is still important. Even patients with cancer will respond differently to chemo when they’re under significant periods of stress. When I’m not dealing with my emotions properly, I can barely hold my cell phone without excruciating pain. I’m in a much better place physically and mentally when my emotions are balanced, even if my hypermobility sometimes is a literal pain.

There is always value in mind-body work, even if it’s not a cure for everything like a congenital disease such as hEDS. Not sure if you have hEDS, but I thought my experience with it may be relevant.
 
Dorado said:
I was diagnosed with hypermobile Ehlers-Danlos by a geneticist at Mayo Clinic (using the most recent diagnostic criteria). Given that it’s congenital, there are plenty of things outside of my control: subluxations; doughy, velvety, stretchy skin that is difficult to biopsy and has people mistakenly believe I’m in twenties instead of my thirties; skin that struggles with wound healing (one of my tattoos took three times longer than usual to heal; it even had blood-stained scabs after one full month); joints that are not stable and can easily bend in ways that lead to injuries; dysautonomia that can be controlled to an extent with mind-body work but remains active in a big way; blood vessels that have apparently worked differently since I was a baby because my collagen is different; etc.

But like any structural disease, the mind-body connection is still important. Even patients with cancer will respond differently to chemo when they’re under significant periods of stress. When I’m not dealing with my emotions properly, I can barely hold my cell phone without excruciating pain. I’m in a much better place physically and mentally when my emotions are balanced, even if my hypermobility sometimes is a literal pain.

There is always value in mind-body work, even if it’s not a cure for everything like a congenital disease such as hEDS. Not sure if you have hEDS, but I thought my experience with it may be relevant.
Click to expand...
Thanks for the reply, I appreciate all the information. I didn't realise there were so many different conditions that cause hypermobility. I don't think I have hEDS, based on the symptoms. Definitely not the stretchy skin at least.

It seems like a lot of people have hypermobility problems (20% or so of the population according to Dr. Google) however I'm guessing they don't all have pain. My hypermobile joints didn't cause me any pain at all until a year ago...
 
I would take a look inside yourself. These are questions I ask myself: is the pain related to emotions? How are you managing your daily emotions? Do you feel like you could use some more balance? What feels out of your control in your life? What are you avoiding? Who or what has disappointed you, and how do you address those issues with them?
 
This is a question I'm struggling with myself! I was diagnosed with "Hypermobility Spectrum Disorder" by a rheumatologist last fall, which I understand to be widespread joint hypermobility, but without some of the skin involvement and other diagnostic criteria you have to meet currently to be diagnosed with HEDS.

I healed from other issues in the past using a TMS approach and the sudden onset of joint pain that led to the hypermobility diagnosis happened after a difficult time that triggered a lot of past trauma to resurface. This timing was definitely not lost on me and, early on, I wondered about TMS.

At the same time, though, it's been challenging to treat it that way because the subluxations, cracking and popping, etc. that happen on a regular basis keep reminding that I do have some structural 'differences' in my body and I really have declined a lot in the course of just a year. (Prior to April of 2021, I had some aches and pains and was pretty susceptible to sports injuries, but was generally active and doing quite well. Then, both of my knees became very painful literally overnight and numerous other joints have followed suit to where it's hard to function these days. It's crazy how quickly it progressed.) I also have had difficulty finding success stories that would help me overcome my doubt and reading other people's success stories was a really important part of my recovery from TMS in the past.

I did find this article, though, which you might find interesting: https://www.sirpa.org/hypermobility-from-a-mind-body-perspective/

You may also want to look up Michelle Wiegers' success story on YouTube. She is diagnosed with HEDS, used a mindbody approach to heal from POTS and the chronic pain associated with her hypermobility and is now a TMS coach.

I also had some correspondence with Dan Buglios from Pain Free You, who was kind enough to share the success story of one of his clients, who went from being very disabled to being active again and actually starting to rock climb within a few months after using a TMS approach. However, I'm not clear on if that person was actually diagnosed as having EDS or if she just suspected it due to her symptoms.

So, I personally am sort of trying to work through my own doubts, but I hope you find some of this helpful. It definitely is a challenging thing to deal with, so I wish you the best and hope you find the answers you're looking for. And, if you have success or learn anything helpful as you go, I would be very appreciative if you'd pass it along.
 
@PaperCrane, I have written lots about hEDS throughout the years! Many of my symptoms are only truly disabling when I’m dealing with emotions - including some dysautonomia symptoms like orthostatic intolerance. I wouldn’t say everything is 100% controlled by the mind-body syndrome, but like any structural disorder, emotions can significantly amplify the intensity.

I understand OP doesn’t think they have hEDS - I’m sure pain sensations in a more benign situation are heightened due to emotions as well.
 
Dorado said:
I was diagnosed with hypermobile Ehlers-Danlos by a geneticist at Mayo Clinic (using the most recent diagnostic criteria). Given that it’s congenital, there are plenty of things outside of my control: subluxations; doughy, velvety, stretchy skin that is difficult to biopsy and has people mistakenly believe I’m in twenties instead of my thirties; skin that struggles with wound healing (one of my tattoos took three times longer than usual to heal; it even had blood-stained scabs after one full month); joints that are not stable and can easily bend in ways that lead to injuries; dysautonomia that can be controlled to an extent with mind-body work but remains active in a big way; blood vessels that have apparently worked differently since I was a baby because my collagen is different; etc.
Click to expand...

Hi Dorado. Since doing so much mindbody work over the years, do you typically just have pain when recovering from an acute injury, like a dislocation, or do you have chronic pain on a regular basis that you need to manage?
 
Dorado said:
@PaperCrane, I have written lots about hEDS throughout the years! Many of my symptoms are only truly disabling when I’m dealing with emotions - including some dysautonomia symptoms like orthostatic intolerance. I wouldn’t say everything is 100% controlled by the mind-body syndrome, but like any structural disorder, emotions can significantly amplify the intensity.

I understand OP doesn’t think they have hEDS - I’m sure pain sensations in a more benign situation are heightened due to emotions as well.
Click to expand...

Sure, gotcha. My message was directed at the OP.
 
PaperCrane said:
Sure, gotcha. My message was directed at the OP.
Click to expand...
Ahhh, I was looking at the Michelle Wiegers reference!

Regarding your question to me, I can have some pain without acute injuries. It’s only disabling when I’m dealing with intense emotions.
 
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