Anyone have Ehler Danlos and TMS?

Suisei

Suisei

Peer Supporter
I have been in chronic pain with RSI for two years now. I have eds type III hyper mobility type and been recently diagnosed. I also have cubital tunnel in both my arms and carpel tunnel in both my wrists also neuropathy everywhere occasionally.. I am not sure if TMS can help me because I have eds but want to give it a try. Someone online recommended the mind body prescription to me and I did look at it before but am skeptical. I miss playing video games and typing and also reading books. My neuropathy has gotten better with arm splints and wrists braces so I am a bit confused. I do have a log of mental health problems as well and chronic anxiety and ocd tendencies so even if I do have tms, not sure if i could get things back to normal. Well sorry for being depressing sounding just really pessimistic lately. :/ Any advice would be helpful!
 
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Welcome to the forum, Suisei.

I don't know what Ehler Danlos is. But you mention many symptoms that are thought by Sarno to be TMS equivalents -- neuropathy, carpel tunnel, anxiety, and OCD. All these can be mindbody conditions.

Read The MindBody Prescription and see if it applies to you. Sarno's The Divided Mind is also good.

Many people here are helped by doing the Structured Education Program, found on this site. Journaling about feelings can help. You might consider being evaluated by a doctor who is trained to diagnose TMS. There is a list of practitioners on this site too.

There are many paths to healing, and different things work for different people. The only thing to do is keep trying until you find what works for you.
 
David88 said:
Welcome to the forum, Suisei.

I don't know what Ehler Danlos is. But you mention many symptoms that are thought by Sarno to be TMS equivalents -- neuropathy, carpel tunnel, anxiety, and OCD. All these can be mindbody conditions.

Read The MindBody Prescription and see if it applies to you. Sarno's The Divided Mind is also good.

Many people here are helped by doing the Structured Education Program, found on this site. Journaling about feelings can help. You might consider being evaluated by a doctor who is trained to diagnose TMS. There is a list of practitioners on this site too.

There are many paths to healing, and different things work for different people. The only thing to do is keep trying until you find what works for you.
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Thank you for replying! Ehler danlos is a connective tissue disorder and is due to faulty collagen . https://en.m.wikipedia.org/wiki/Ehlers–Danlos_syndrome (Ehlers–Danlos syndrome - Wikipedia) They say people with EDS are prone to rsi injuries but not sure why. Sadly I dont have money to have a diagnosis tor TMS right now but I am excited to try out MBP. I just bought a copy today! :) Maybe this is also a way ror our bodies to help with our mental health. I usually avoid my problems by not being in the moment ect.
 
Suisei said:
I do have a log of mental health problems as well and chronic anxiety and ocd tendencies so even if I do have tms, not sure if i could get things back to normal. Well sorry for being depressing sounding just really pessimistic lately.
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All the physical things you mention are, or can likely be TMS symptoms. Anxiety, OCD, and depression are also TMS/AFFECTIVE emotional symptoms. Dr. Sarno cured Howard Stern of his OCD, and his back pain, the "King of all Media" mentions this in his biography. About 80% of what ails humanity is TMS, so the odds are good you likely have it. As long as you are treated for anything serious by your docs, you have nothing to lose by pursuing the TMS method. Many people have been cured of life long psychosomatic symptoms by accepting that they are TMS. Read the books and if that's not enough see or consult with a TMS physician or practitioner for guidance.

G'luck!
tt
 
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Tennis Tom said:
All the physical things you mention are, or can likely be TMS symptoms. Anxiety, OCD, and depression are also TMS affective emotional symptoms. Dr. Sarno cured Howard Stern of his OCD and his back pain and the "King of all Media" mentions that in his biography. About 80% of what ails humanity is TMS, so the odds are good you likely have it. As long as you are treated for anything serious by your docs, you have nothing to lose by pursuing the TMS method. Many people have been cured of life long psychosomatic symptoms by accepting that they are TMS. Read the books and if that's not enough see or consult with a TMS physician or practitioner for guidance.

G'luck!
tt
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Thankyou! I have been in therapy sessions since high school and have switched several medications for anxiety. Nothing has worked for me and I dont know exactly if I am resistant prone or not but I will keep trying.
 
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Suisei said:
I have been in chronic pain with RSI for two years now. I have eds type III hyper mobility type and been recently diagnosed. I also have cubital tunnel in both my arms and carpel tunnel in both my wrists also neuropathy everywhere occasionally.. I am not sure if TMS can help me because I have eds but want to give it a try. Someone online recommended the mind body prescription to me and I did look at it before but am skeptical. I miss playing video games and typing and also reading books. My neuropathy has gotten better with arm splints and wrists braces so I am a bit confused. I do have a log of mental health problems as well and chronic anxiety and ocd tendencies so even if I do have tms, not sure if i could get things back to normal. Well sorry for being depressing sounding just really pessimistic lately. :/ Any advice would be helpful!
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I know a bit about EDS and I think you can definitely have TMS along with it. Hypermobility or EDS alone should not cause pain. However, people with EDS may be more susceptible to pain from joint dislocations or sprains/strains from joints and connective tissue being less stable. If an actual injury like a sprain or dislocation occurs, you would have acute pain, swelling and the other signs of inflammation and injury. Like Sarno says, the body (even one with EDS) is great at healing and this should clear up within a matter of weeks. If pain persists beyond that it's like anyone else who has had TMS piggybacking onto a real structural injury.

As has been discussed in TMS books and on this forum, long lasting bouts of pain from "RSI" or tunnel syndrome are often variants of TMS, whether or not a true injury preceded them or not. It definitely sounds like you would benefit from following the TMS method to address your chronic pain! I think it is also common for people with EDS or other chronic diagnoses to have anxiety or depression as well. Many people here have had both.

My advice would be to give it a try, enter into the world of TMS with an open mind...it will not be an instant fix or cure to either pain or anxiety/depression but there's nothing to lose and lots to learn.
 
MindBodyPT said:
I know a bit about EDS and I think you can definitely have TMS along with it. Hypermobility or EDS alone should not cause pain. However, people with EDS may be more susceptible to pain from joint dislocations or sprains/strains from joints and connective tissue being less stable. If an actual injury like a sprain or dislocation occurs, you would have acute pain, swelling and the other signs of inflammation and injury. Like Sarno says, the body (even one with EDS) is great at healing and this should clear up within a matter of weeks. If pain persists beyond that it's like anyone else who has had TMS piggybacking onto a real structural injury.

As has been discussed in TMS books and on this forum, long lasting bouts of pain from "RSI" or tunnel syndrome are often variants of TMS, whether or not a true injury preceded them or not. It definitely sounds like you would benefit from following the TMS method to address your chronic pain! I think it is also common for people with EDS or other chronic diagnoses to have anxiety or depression as well. Many people here have had both.

My advice would be to give it a try, enter into the world of TMS with an open mind...it will not be an instant fix or cure to either pain or anxiety/depression but there's nothing to lose and lots to learn.
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Thank you for your response! My PT therapist and ortho say that neuropathy is uncommon with EDS so I expect that too as well. I just want to be able to use my arms and hands again so I think it's worth it for that. I have been babying my hands and havent done activities I enjoy for a year or so. I just hope that I have the confidence to change my thoughts .
 
Suisei said:
Thank you for your response! My PT therapist and ortho say that neuropathy is uncommon with EDS so I expect that too as well. I just want to be able to use my arms and hands again so I think it's worth it for that. I have been babying my hands and havent done activities I enjoy for a year or so. I just hope that I have the confidence to change my thoughts .
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Yes sounds really reasonable! the TMS work should address the hand pain you've had. It does take courage to begin to change your thoughts...it helps to have support from those around you, which I know can be tough to come by. This forum is great for support too :) Just know that despite having anxiety, OCD, depression or anything else lots of us have been successful in rewiring our thoughts to get out of that awful pain mindset. Good luck as you begin!
 
MindBodyPT said:
Yes sounds really reasonable! the TMS work should address the hand pain you've had. It does take courage to begin to change your thoughts...it helps to have support from those around you, which I know can be tough to come by. This forum is great for support too :) Just know that despite having anxiety, OCD, depression or anything else lots of us have been successful in rewiring our thoughts to get out of that awful pain mindset. Good luck as you begin!
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Thankyou so much! :) I will keep being positive then since that is negative thinking and depression talking problem. Also thank you for anyone that reads and posts :)
 
Suisei said:
I just want to be able to use my arms and hands again so I think it's worth it for that. I have been babying my hands and havent done activities I enjoy for a year or so. I just hope that I have the confidence to change my thoughts .
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"Perhaps the most important (but most difficult) thing patients must do is to resume all physical activity, including the most vigorous." "HEALING BACK PAIN", Dr. Sarno, pg. 79.

Read Steve Ozanich's great TMS tome, "THE GREAT PAIN DECEPTION", in it he mentions some of the extremes he went to in returning to his normal activities like playing golf.
 
Tennis Tom said:
"Perhaps the most important (but most difficult) thing patients must do is to resume all physical activity, including the most vigorous." "HEALING BACK PAIN", Dr. Sarno, pg. 79.

Read Steve Ozanich's great TMS tome, "THE GREAT PAIN DECEPTION", in it he mentions some of the extremes he went to in returning to his normal activities like playing golf.
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I guess it is really 'no pain no game' haha. I am having Mind Body Prescription shipping in. I'm excited I have been trying my best to notice pain and then it moves today. Was on my phone today no stretching and everything and recognized it. It slowly went away.
 
Yes, I’ve talked about this a lot. I have the same type of Ehlers-Danlos as you. I just discussed this here: https://www.tmswiki.org/forum/threads/want-to-heal-stop-trying-to-heal.18306/page-2 (Want to heal? Stop trying to heal!) (Want to heal? Stop trying to heal!)

Ehlers-Danlos makes us more suspectible to autonomic nervous system and mast cell overactivity, inappropriate cortisol releases, etc. This makes us prime TMS targets. But this is great news, as many of the symptoms don’t have to be permanent. My allodynia has nearly disappeared, my Raynaud’s and orthostatic intolerance have improved, my dermatographia is lessening (my neurologist was so pleased!), etc. My jaw will always pop out when I chew or yawn, my skin will always be stretchy, I’ll always have to avoid moving my flexible joints too far to prevent them from popping out, but the other symptoms are totally increased by stress. Stress and repressed rage are total enemies of an Ehlers-Danlos patient.

So yes, the majority of my pain and dysfunction has been going away by enjoying life, changing my outlook, and working on anxiety and anger.
 
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Dorado said:
Yes, I’ve talked about this a lot. I have the same type of Ehlers-Danlos as you. I just discussed this here: https://www.tmswiki.org/forum/threads/want-to-heal-stop-trying-to-heal.18306/page-2 (Want to heal? Stop trying to heal!) (Want to heal? Stop trying to heal!)

Ehlers-Danlos makes us more suspectible to autonomic nervous system and mast cell overactivity, inappropriate cortisol releases, etc. This makes us prime TMS targets. But this is great news, as many of the symptoms don’t have to be permanent. My allodynia has nearly disappeared, my Raynaud’s and orthostatic intolerance have improved, my dermatographia is lessening (my neurologist was so pleased!), etc. My jaw will always pop out when I chew or yawn, my skin will always be stretchy, I’ll always have to avoid moving my flexible joints too far to prevent them from popping out, but the other symptoms are totally increased by stress. Stress and repressed rage are total enemies of an Ehlers-Danlos patient.

So yes, the majority of my pain and dysfunction has been going away by enjoying life, changing my outlook, and working on anxiety and anger.
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I am new here and haven’t started the program yet. I’ve been procrastinating for months. I also have EDS type 3/hypermobility. I am 32 and have been suffering from chronic pain for 9 years. So thank you for sharing your story. I have a hard time believing deep down TMS treatment will work because there IS a structural problem in my body. But I’m encouraged to hear that you’ve had such drastic improvements. And like the low back pain stories I’ve read, just because there’s a structural problem (like a herniated disk) doesn’t mean it has to cause one pain. I’m trying to remind myself of that. I like others here have fear that if this doesn’t work, nothing will. I’ve tried everything out there all mainstream and alternative medicine has to offer...and spent thousands and thousands of dollars on treatments to try to get better or just to manage symptoms.
 
Hi kOherr04,

Welcome to the Forum. I think there is great hope to improve your symptoms! Dorado is a living example right here on the Forum. I also have a friend with some debilitating form of EDS who has greatly reduced his symptoms, partly through fearing the pain less, mindfulness, etc. You might, if you've not already, go through Alan Gordon's program listed at the top of the page.

Keep us posted!!

Andy
 
That is correct - I was diagnosed by an amazing geneticist at a large hospital after an internist gave me a high Beighton score, stretched my skin in ways that resembled Gumby, saw the piezogenic papules in my feet, asked about symptoms I experience and my family history, etc. I have the hypermobile type, with some classical type skin features (the true classical type and all other types were ruled out via genetic testing). The overactive autonomic nervous system and mast cells many of us have mean that we are more prone to developing mind-body symptoms while dealing with intense emotions (repressed or not), but that's okay and it's not a death sentence! You can overcome it. Adding in cognitive behavioral therapy was a total game changer for me. My body is responding to far less intense emotions these days, which means it's also creating far less mind-body symptoms. :)
 
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