I'm back and needing some advice

[Jules]

Hi all, (warning: long)

I used to frequent this site daily for years, and then I did the work and healed from chronic pain and anxiety. The support and help I got here was amazing. It was wonderful! But like always, life happens when you're making other plans.

This past year has been very challenging, from my father passing after two years of caregiving, and six family members, including our beloved dog, passing too. Also, needing to help son before he had to take out bankruptcy, getting a new puppy, (what was I thinking??) and dealing with all the turmoil in the world.

Caring for my father was an honor but it was also very hard at times. But I conquered a fear of not being able to see dead people, due to a very traumatic experience as a child. I was actually able to be surrounded by family when he passed in our home and I was supported with peace, comfort, and love.

Shortly after, my daughter who was diagnosed with Ehler's-Danlos Syndrome (hypermobile) expressed to me that I needed to get diagnosed because I had the same symptoms as her and she recognized that from all the years I was in pain (separated shoulder, frozen shoulder, pulled muscles, etc) and not knowing what was wrong with me. At this time, the pain had returned full-force, and instead of immediately going to TMS, which I have always done in the past, I figured maybe she was right. So, I took a test and found that I do have it.

I had mixed emotions about it. On one hand, I was glad I got diagnosed. But on the other, I was angry because I have been dealing with this pain for decades and not one doctor thought about testing me! Needless to say, I was angry and yet, afraid, because I truly had something physical going on. However, I also know that there was a member here (Steve?) that had EDS and was able to rid himself of the pain associated with it, by retraining his brain to recognize that EDS is not a death sentence and you can reduce your pain greatly by doing the work.

So, once I was diagnosed, my pain decided it was safe to be expressed and oh boy, has it done so. On my right side, mainly my back, hip, ribs, neck, and shoulder pain all came back. I hadn't had that pain for years. Weirdly enough, my left side seems pretty good, except for a little flare once in a while. But, also, some anxiety has returned. (not panic, thank Heavens!) Now, keep in mind, this has NOT stopped me from living life! Yesterday, I took a 30-minute walk with hubby and puppy, even in pain.

But, shortly after getting my cute labradoodle puppy (who is a land shark) arrived, I started training. I didn't want to make the same mistake we had made with our mutt who we couldn't get to stop barking for anyone. I fully immersed myself into training this new guy, Cody. Well, when he had been here for just three weeks, I was playing tug of war with him and felt a pop. I pulled a muscle just by playing a game!

It took two weeks for it to stop hurting, but shortly after, I tried again, and it happened again! This fed into my frightened brain that I truly did have a condition and it would only get worse as I aged. To make matters worse, my husband told me he didn't want the puppy (even when he said it was OK) and he considers him MY dog, ugh! So, not only am I dealing with chronic pain (again) I am also having to raise a puppy who is very manipulative, timid, and loves to bite. (he's teething) I signed him up for training classes, which costs a small fortune, but hoping this will take the pressure off me.

Regardless, this has torn a rift in our marriage of 34 years and I am not only frustrated but exhausted. No wonder why pain has been my daily companion once again. I am back in therapy, after a 4-year break and that has helped some, but because I now have a label, the brain truly thinks I'm in danger. It doesn't help that my daughter now talks about EDS all the time because now, "I have someone who can relate to me," which brings up some not fond memories of my mother doing the same to me when she had fibromyalgia and I was diagnosed with it decades later in the early 2000s. (familiarity breeds contempt)

I am pretty much at my wit's end with everyone and just want to get back to being pain-free, but being reminded constantly that pain is part of EDS, it keeps sending my brain signals that it's in danger.

How can I get back to where I was, not offend my daughter, (don't want her talking about EDS) and get my brain to switch off the alarm signals?

TIA for your help and support,
Julia

 

[Cactusflower]

Julia:
I hear you. This year I was diagnosed with a "real" medical condition and I think the medication I must take is contributing to my rise in symptoms. I think there are a few things going on.
We both fear the getting older and not being able to do all the things we love part of it. Fear life changing like you might also be fearing with your spouse. You got the dog, life has changed. We fear the "diagnoses" and the balance between the physical and emotional stuff is a challenge, but it's part of life and we can work towards accepting what is.
What do you fear about this "diagnoses"?
Is your EDS genetically diagnosed or not? I've read a bit about EDS because some of my symptoms can be described as "hypermobilty" but clearly, it is not at all. I'm tight and ridged and when I actually "stretch" beyond this rigidity my muscles feel it. I've read some different perspectives on EDS from a variety of professionals. Most agree that some forms of genetic EDS can be physically challenging for people but non-genetic forms are generally considered TMS. It's our body expressing something is "wrong".
In this way, you can talk to your daughter. You can begin to explain that she is not her symptoms and her symptoms don't define her, and that you learned how to step out of this subtle form of self-victimization and false perception of safety of "because I have a diagnoses there for I am" that can hold one back EVEN IF there is something else going on. That you wish she felt free within whatever she is experiencing to live her very best life, and that you want that for yourself too - therefore you need to set a boundary of not talking about symptoms. Explain those boundaries are for YOU and that she can talk about her symptoms to anyone else she chooses, just not you. That doesn't mean you don't support her, it just means certain topics are off limits for your own personal well being. Explain the anxiety it creates for you.

At the same time, it sounds like your husband is setting some sort of boundaries that are challenging for you surrounding the dog. Perhaps honoring his boundaries and reminding yourself that puppy faze is just a faze will help.

I just started the Pain Psychology workbook, and just the first page "assignment" was super helpful. It reminds you that the things you fear or are triggers create cycles. Then it reminds you that grounding yourself in the moment is a helpful way to begin to break the cycle and step outside of those endless thought loops to simply notice what is happening. The notebook might be helpful to both you and your daughter "even if" the diagnoses is truly medical/genetic.
Another part of the notebook reminds us that removal of the pain might be our brain's goal, but that in itself creates immense self pressure and rarely works to achieve the "goal". You are right, we are human we feel pain: physically, emotionally and spiritually. The title of the book reminds us that all we need to do is to find BALANCE, and that removing the pressures, stressors etc. don't solve the problem. The problem is how we perceive ourselves within our experiences.

Why are you blaming yourself for getting a puppy when you were, perhaps feeling very alone in your grief, and needing some comfort? A puppy provides those things and you were in need. Were people present in your life offering this comfort?
Why are you blaming yourself for finding your daughters self-victimization as uncomfortable? It is really difficult to see the ones we love going through these stages of suffering, especially if we've been on that journey ourselves. It can also feel like a HUGE responsibility to help her through this time of life when you yourself are suffering in pain, and grief. Remind yourself you can offer some guidance, but it's her journey. If you need boundaries that's OK - you aren't judging her, you don't have to judge yourself but you can simply express your needs.
It's not your job to please your husband 100% of the time. He agreed, now he has some regret. Not your problem. He is free to express his regret about HIS decision but you don't have to adopt the same mindset. Acknowledge the challenge. Journal about it. Write him an unsent letter. Write your daughter an unsent letter (these are so helpful for clearing the mind to set boundaries), write the PUPPY an unsent letter.
Re-focus. You are focusing on challenges, fears, frustrations (anger rage ....SARNO!) - are you able to focus on any of the joys and comforts at this time? If not, try to find small things that encourage those old feelings: a favorite old movie, a hobby, a walk in nature, a hot cup of your favorite beverage ... anything at all that provides even a second or two of peace. Slowly work towards regaining more seconds of that peace.

 

[Cactusflower]

You may also find this information about EDS from the Association for the Treatment of Neuroplastic Symptoms Association helpful https://www.symptomatic.me/ehlers-danlos-syndrome (Ehlers-Danlos Syndrome: What to Know | Symptomatic.me)

 

[BloodMoon]

Hi @Jules,

You asked: “How can I get back to where I was, not offend my daughter, and get my brain to switch off the alarm signals?”

The timing is key: you were pain-free for years with the same joints and the same underlying EDS. The pain came back after all the stresses and after the diagnosis. It seems very unlikely that your body suddenly deteriorated overnight to cause such an onslaught of symptoms. So, I’d keep reminding yourself of this.

With your daughter, you could say that, as you were symptom-free for four years before the onslaught of recent stresses appeared in your life, you don’t want to dwell on and talk aogutt symptoms that may or may not be caused by your EDS. However, you do want to be supportive to her, but in a way that you know, from experience, is likely to help and is life-affirming.

You could also suggest doing things together that tie into this – attend a meditation class, try tai chi or qigong together, or find something else that helps you both focus on calming the nervous system rather than constantly focusing on symptoms.

I think that way you’re not dismissing the EDS or telling her that the symptoms aren’t real. You’re just choosing to put your energy into something that is actually likely to help you both.

If your daughter is not interested in participating, go back to the mind-body approach anyway and perhaps decide on a policy of directing any conversation about EDS symptoms that your daughter starts towards what she could do mind/body-wise to feel better mentally.

 

[Jules]

Julia:
I hear you. This year I was diagnosed with a "real" medical condition and I think the medication I must take is contributing to my rise in symptoms. I think there are a few things going on.
We both fear the getting older and not being able to do all the things we love part of it. Fear life changing like you might also be fearing with your spouse. You got the dog, life has changed. We fear the "diagnoses" and the balance between the physical and emotional stuff is a challenge, but it's part of life and we can work towards accepting what is.
What do you fear about this "diagnoses"?
Is your EDS genetically diagnosed or not? I've read a bit about EDS because some of my symptoms can be described as "hypermobilty" but clearly, it is not at all. I'm tight and ridged and when I actually "stretch" beyond this rigidity my muscles feel it. I've read some different perspectives on EDS from a variety of professionals. Most agree that some forms of genetic EDS can be physically challenging for people but non-genetic forms are generally considered TMS. It's our body expressing something is "wrong".
In this way, you can talk to your daughter. You can begin to explain that she is not her symptoms and her symptoms don't define her, and that you learned how to step out of this subtle form of self-victimization and false perception of safety of "because I have a diagnoses there for I am" that can hold one back EVEN IF there is something else going on. That you wish she felt free within whatever she is experiencing to live her very best life, and that you want that for yourself too - therefore you need to set a boundary of not talking about symptoms. Explain those boundaries are for YOU and that she can talk about her symptoms to anyone else she chooses, just not you. That doesn't mean you don't support her, it just means certain topics are off limits for your own personal well being. Explain the anxiety it creates for you.

At the same time, it sounds like your husband is setting some sort of boundaries that are challenging for you surrounding the dog. Perhaps honoring his boundaries and reminding yourself that puppy faze is just a faze will help.

I just started the Pain Psychology workbook, and just the first page "assignment" was super helpful. It reminds you that the things you fear or are triggers create cycles. Then it reminds you that grounding yourself in the moment is a helpful way to begin to break the cycle and step outside of those endless thought loops to simply notice what is happening. The notebook might be helpful to both you and your daughter "even if" the diagnoses is truly medical/genetic.
Another part of the notebook reminds us that removal of the pain might be our brain's goal, but that in itself creates immense self pressure and rarely works to achieve the "goal". You are right, we are human we feel pain: physically, emotionally and spiritually. The title of the book reminds us that all we need to do is to find BALANCE, and that removing the pressures, stressors etc. don't solve the problem. The problem is how we perceive ourselves within our experiences.

Why are you blaming yourself for getting a puppy when you were, perhaps feeling very alone in your grief, and needing some comfort? A puppy provides those things and you were in need. Were people present in your life offering this comfort?
Why are you blaming yourself for finding your daughters self-victimization as uncomfortable? It is really difficult to see the ones we love going through these stages of suffering, especially if we've been on that journey ourselves. It can also feel like a HUGE responsibility to help her through this time of life when you yourself are suffering in pain, and grief. Remind yourself you can offer some guidance, but it's her journey. If you need boundaries that's OK - you aren't judging her, you don't have to judge yourself but you can simply express your needs.
It's not your job to please your husband 100% of the time. He agreed, now he has some regret. Not your problem. He is free to express his regret about HIS decision but you don't have to adopt the same mindset. Acknowledge the challenge. Journal about it. Write him an unsent letter. Write your daughter an unsent letter (these are so helpful for clearing the mind to set boundaries), write the PUPPY an unsent letter.
Re-focus. You are focusing on challenges, fears, frustrations (anger rage ....SARNO!) - are you able to focus on any of the joys and comforts at this time? If not, try to find small things that encourage those old feelings: a favorite old movie, a hobby, a walk in nature, a hot cup of your favorite beverage ... anything at all that provides even a second or two of peace. Slowly work towards regaining more seconds of that peace.

Thank you so much, Cactus!

First, EDS is genetic. Not only do me and my daughter have it, but so does my sister's daughter. She has the most severe, vascular EDS, while me and my daughter have the hypermobile kind. I'm pretty sure my youngest also has it, but she refuses to get diagnosed since she's focusing on work and being an athlete. (I won't judge her)

The thing with EDS is because we are so hypermobile, our joints are easy to slip out or we can injure ourselves easier. It's not normal to be able to bend your wrist a full 90 degrees back, or twist your elbows backward. I have separated my shoulder and frozen it, all from my previous dog pulling on the leash. I was in P.T. several times with shoulder and rib sublaxations. I also had a balance disorder for 10 years, due to TMJ that worse my jaw bones down to nothing but put pressure on my inner ear. Regardless, I have learned to live with it.

I'm not necessarily afraid of the diagnoses, per se, but my brain hears EDS and starts freaking out. Of course, it wants to know everything about it, so I go down a rabbit hole. Then I get to thinking maybe this is why I haven't been able to completely "heal" because I really do have a condition to explain a lot of the pain.

But, I do remember several years back when I went on a trip to Thailand and my pain disappeared. I was able to hike 10 miles in a legit jungle, ride elephants, walk all over, and had NO pain. It was so freeing!

I feel with all the stress that has built over the past several years, my brain is on high alert 24/7. For example, last year, I was in the ER a total of 7 times, with my father, mother, son, daughter, and granddaughter. My DIL had major complications with the birth of her daughter and nearly died. This was very stressful and scary for the family. This happened 6 days after my dad passed from a rare disease that affected his heart. He lived with me and my husband for two years and the last 6 months on Hospice was so hard, knowing he was dying. It didn't help that my mother is also not doing well and has had chronic pain for decades, and is always sick or in pain, due to the 9 diseases (she says) she has.

I blame myself for getting the puppy because my husband wanted to work on our relationship and not bring another distraction and obstacle. This puppy is very anxious, stubborn, and took two months to go through the doggy door on his own! But he does walks beautifully, which has helped me stay grounded.

With my daughter, I have tried to get her to listen about TMS but she refuses. She's not like me, where if I had learned about it decades ago, I would have jumped at the chance to get well. She has two autistic children and a husband who checks out of life, basically. He works, but rarely goes anywhere, due to his anxiety and migraines. It puts a ton of pressure on her to do everything. I can relate, because my husband also suffered from panic attacks for years and could barely function, and I had to take care of everything - in spite of having chronic pain.

I like the idea of sending unsent letters, but sometimes even too much typing gets me into a rib flare. Maybe I will do one a day.

Thank you for your thoughtful comments and suggestions and I will check out the link.

 

[Jules]

Hi @Jules,

You asked: “How can I get back to where I was, not offend my daughter, and get my brain to switch off the alarm signals?”

The timing is key: you were pain-free for years with the same joints and the same underlying EDS. The pain came back after all the stresses and after the diagnosis. It seems very unlikely that your body suddenly deteriorated overnight to cause such an onslaught of symptoms. So, I’d keep reminding yourself of this.

With your daughter, you could say that, as you were symptom-free for four years before the onslaught of recent stresses appeared in your life, you don’t want to dwell on and talk aogutt symptoms that may or may not be caused by your EDS. However, you do want to be supportive to her, but in a way that you know, from experience, is likely to help and is life-affirming.

You could also suggest doing things together that tie into this – attend a meditation class, try tai chi or qigong together, or find something else that helps you both focus on calming the nervous system rather than constantly focusing on symptoms.

I think that way you’re not dismissing the EDS or telling her that the symptoms aren’t real. You’re just choosing to put your energy into something that is actually likely to help you both.

If your daughter is not interested in participating, go back to the mind-body approach anyway and perhaps decide on a policy of directing any conversation about EDS symptoms that your daughter starts towards what she could do mind/body-wise to feel better mentally.

Thank you, Bloodmoon.

The symptoms returned when my dad was diagnosed with his disease and I realized I would be needing to care for him until his death. He already came to live with us when he left my mom, due to emotional and mental abuse, but she is very manipulative and needed "care" for a solid year. He took our car and would see her every day to help care for her dog or her. He was gone all day. It took a massive toll on him and I believe accelerated his disease. I got one year with him, where he was lucid, we could take walks, a trip to the state he grew up in, and just long talks. After that, he went downhill and 6 months later, he was in Hospice and 6 months after, he passed.

My mom is still alive, and in a assisted living center, but every time I talk to her, she ruminates on her death. She also talks non-stop about how and when she will die. It's exhausting. Couple this with arguments between my husband and I about the puppy, my mom, our kids, etc., and you can see how the perfect storm set up the symptoms to return.

My siblings also put the pressure on me to be Power of Attorney for both, even though my sister lives about 7 minutes from her. (I live 20 minutes) I'm the one who took them both to their appointments, ER visits, rehab, the VA (my father), and more.

Regarding my daughter, she has lost 45 lbs, which is amazing, and she says it helps her better able to function, do some exercise, and decrease her pain. But, she is also manipulative and once she gets into a "poor me" cycle, I get the full brunt of it. We are also both ADHD, so you can imagine how our relationship is (all my kids have it and two grandchildren have it - two also have autism) She also has a sleep disorder (narcolepsy) so she sleeps a lot. (when kids are in school) But, she also can't sleep at night, and won't go to sleep until 3:00 or 4:00. My husband is the same way. (I'm in bed by 10:00)

I will mention doing something like yoga and see if that would help. But yes, I do need to talk to her about some boundaries.

 

[Cactusflower]

No offense @Jules, but you are making excuses for everyone in your life.
You've made excuses for not making boundaries with your daughter. Her life is challenging, but it's her life to navigate. Sounds like you get to be doting grandma! You don't have to follow her into a downward victimization spiral. Boundaries are for YOU. Learn to remove yourself from that discussion. I think you can support her in getting some support for her own journey, it sounds like she is having a rough time but is stuck in many ways. Sometimes being stuck simply feels easier than change, especially if co-dependancy is involved. You can't control all the extra stuff she has going on in her life, but you can control how you react to it all.
You've made an excuse for "not working on your relationship" with your husband because of a dog. You can do both, and not have to absorb your husband's emotions surrounding the dog. You can still work on that relationship. It sounds like your husband really wants this, do you? Can you do this at this time or is it all still too heavy. Talk to him about that. Perhaps now is not the time but in a few months when you can deal with the grief and going through all that turmoil you will be ready.

You are putting everyone else first instead of you.

Please read the link I offered for EDS. I think it's really helpful and a very short blurb to put things into perspective. The reason I asked about genetics is because people get offered an actual EDS diagnoses by doctors who don't fully understand the difference of genetics vs. presenting symptoms. A few people have come to this forum who don't have the genetic markers but were offered and EDS diagnoses and that isn't fair to them, I wouldn't want anyone to have to navigate that kind of confusion.
ADHD is a challenge, I seem to have some of those types of symptoms but it's not a concern for me - I know ADHD is now being considered another type of coping mechanism so I just notice what is happening and move on. No worries or excuses. No defining myself by some "syndrome" or thing.
I think yoga is an absolutely fabulous way to do things for yourself! Have you ever tried meditation, something like going to Yoga Nidra or Restorative Yoga? I used to go to restorative yoga with some ladies diagnosed with EDS and Fibro. The yoga instructor was compassionate and absolutely wonderful about coaching empowerment. A great experience.
EVERYTHING you've gone to fosters so much heaviness and feeling victimized by such loss and so much having to be there for everyone else but yourself in their time of need. I think your body (and mind) is saying "ME!!!" what about ME!!!

 

[BloodMoon]

I think your body (and mind) is saying "ME!!!" what about ME!!!

I agree with Cactus.

I felt in a whirlwind of exhaustion just from reading about your family’s problems and the responsibilities you took on. To be blunt, the word “no” needs to be in your vocabulary because enough, already.

For instance, your sister could have been an attorney for one of your parents and you for the other, or you could have been co-attorneys for both instead of her pushing the responsibility all on you! (I’m assuming being co-attorneys is possible in the US – it certainly is here where I am in the UK.)

Imo it's time to pull up the drawbridge and nourish and nurture yourself. Put the oxygen mask on yourself first and breathe.

 

[Jules]

No offense @Jules, but you are making excuses for everyone in your life.
You've made excuses for not making boundaries with your daughter. Her life is challenging, but it's her life to navigate. Sounds like you get to be doting grandma! You don't have to follow her into a downward victimization spiral. Boundaries are for YOU. Learn to remove yourself from that discussion. I think you can support her in getting some support for her own journey, it sounds like she is having a rough time but is stuck in many ways. Sometimes being stuck simply feels easier than change, especially if co-dependancy is involved. You can't control all the extra stuff she has going on in her life, but you can control how you react to it all.
You've made an excuse for "not working on your relationship" with your husband because of a dog. You can do both, and not have to absorb your husband's emotions surrounding the dog. You can still work on that relationship. It sounds like your husband really wants this, do you? Can you do this at this time or is it all still too heavy. Talk to him about that. Perhaps now is not the time but in a few months when you can deal with the grief and going through all that turmoil you will be ready.

You are putting everyone else first instead of you.

Please read the link I offered for EDS. I think it's really helpful and a very short blurb to put things into perspective. The reason I asked about genetics is because people get offered an actual EDS diagnoses by doctors who don't fully understand the difference of genetics vs. presenting symptoms. A few people have come to this forum who don't have the genetic markers but were offered and EDS diagnoses and that isn't fair to them, I wouldn't want anyone to have to navigate that kind of confusion.
ADHD is a challenge, I seem to have some of those types of symptoms but it's not a concern for me - I know ADHD is now being considered another type of coping mechanism so I just notice what is happening and move on. No worries or excuses. No defining myself by some "syndrome" or thing.
I think yoga is an absolutely fabulous way to do things for yourself! Have you ever tried meditation, something like going to Yoga Nidra or Restorative Yoga? I used to go to restorative yoga with some ladies diagnosed with EDS and Fibro. The yoga instructor was compassionate and absolutely wonderful about coaching empowerment. A great experience.
EVERYTHING you've gone to fosters so much heaviness and feeling victimized by such loss and so much having to be there for everyone else but yourself in their time of need. I think your body (and mind) is saying "ME!!!" what about ME!!!

You're right I am making excuses and I need to work on that. I'm so used to being a people pleaser that my needs get put on the back-burner. One thing about my husband and I's relationship. It's been rocky and for the longest time, I tried to work on it. I went to therapy, read books, watched podcasts, and tried to be patient, but it didn't help. NOW he wants to work on it, right in the middle of all this chaos?? I had given up and now he wants all my attention. He's not even retired, but I fear when that day comes, he will expect to go jet-setting all over the world. I don't want that. We've traveled to several countries and that's good enough for me.

But, I can't get a job to save my life, after having been laid off 2 years ago) so my full attention has been on my family. I fear the time is slipping away too fast. When you lose a parent, it hits you that your generation is next. So, I guess I'm trying to control it too much.

I would love to get away, just myself, but honestly, I would just ruminate on everything back home.

 

[Jules]

I agree with Cactus.

I felt in a whirlwind of exhaustion just from reading about your family’s problems and the responsibilities you took on. To be blunt, the word “no” needs to be in your vocabulary because enough, already.

For instance, your sister could have been an attorney for one of your parents and you for the other, or you could have been co-attorneys for both instead of her pushing the responsibility all on you! (I’m assuming being co-attorneys is possible in the US – it certainly is here where I am in the UK.)

Imo it's time to pull up the drawbridge and nourish and nurture yourself. Put the oxygen mask on yourself first and breathe.

My sister is an alternate Power of Attorney if something happens to me, but she has a worse relationship with my mother than I do, my twin brother works 14 hours a day 6 days a week, and my oldest brother is across the country. So, yeah, it was left up to me.

I. Am. Exhausted.

I believe my brain is screaming, "Danger, Will Rogers!"

It's the "Calgon, take me away!' (If you know what that commercial is from the 80s)

Can I hide away, for a year, haha?

 

[BloodMoon]

You say this...

"Can I hide away, for a year, haha?"

...but then you've already said this...

"I would love to get away, just myself, but honestly, I would just ruminate on everything back home."

Things don't have to be all or nothing. You can reduce your people pleasing and make other changes in baby-steps... just one small step at a time to improve things for yourself.

I'm not saying that you should necessarily do this... but, just for example... your sister is an alternate power of attorney if something happens to you, but that doesn't help you deal with your mother day to day now. There will be things you do for your mother that your sister could do — paperwork for instance. When I was a power of attorney for my late father, dealing with the banks here was a nightmare. If I'd had a sibling, they could have helped by handling that sort of stuff.

And so what if she has a worse relationship with your mother? She can bite her tongue or whatever she needs to do in order to get on with it, just like I surmise you're probably having to do in one way or another in your dealings with your mother.

A journey of 1,000 steps begins with just one step (of your choosing, but you need to be willing to take it).

 

[Adam Coloretti (coach)]

At this time, the pain had returned full-force, and instead of immediately going to TMS, which I have always done in the past, I figured maybe she was right. So, I took a test and found that I do have it.

Hi Jules - I just wanted to clarify the above piece of text with this one:

So, once I was diagnosed, my pain decided it was safe to be expressed and oh boy, has it done so. On my right side, mainly my back, hip, ribs, neck, and shoulder pain all came back. I hadn't had that pain for years.

I'm confused as to which one it is - did you have the pain before you were diagnosed, or did the diagnosis kick it all off?

The timing is key: you were pain-free for years with the same joints and the same underlying EDS. The pain came back after all the stresses and after the diagnosis. It seems very unlikely that your body suddenly deteriorated overnight to cause such an onslaught of symptoms. So, I’d keep reminding yourself of this.

Whilst I think the conversation with Cactus and Bloodmoon around stress/emotions is very valuable and important, I think this was overlooked and this really is the most important thing in my opinion that's been said in this entire thread. Because if the answer to my question is the latter, then why would you not have symptoms (you still would have had EDS beforehand, it didn't happen overnight when you were diagnosed) for all that time beforehand? It doesn't make any sense unless it's TMS, as the fear that the diagnosis brought has triggered the symptoms. It appears to have been the same thing with fibromyalgia- you had it until you didn't as it was TMS. I'm not questioning that you are hyper mobile (and that doesn't need to be fixed if this is TMS), but if the pain did all kick off only after the diagnosis, then @BloodMoon is correct and that's overwhelming evidence of TMS (which is great!)

 

[Jules]

Hi Jules - I just wanted to clarify the above piece of text with this one:



I'm confused as to which one it is - did you have the pain before you were diagnosed, or did the diagnosis kick it all off?



Whilst I think the conversation with Cactus and Bloodmoon around stress/emotions is very valuable and important, I think this was overlooked and this really is the most important thing in my opinion that's been said in this entire thread. Because if the answer to my question is the latter, then why would you not have symptoms (you still would have had EDS beforehand, it didn't happen overnight when you were diagnosed) for all that time beforehand? It doesn't make any sense unless it's TMS, as the fear that the diagnosis brought has triggered the symptoms. It appears to have been the same thing with fibromyalgia- you had it until you didn't as it was TMS. I'm not questioning that you are hyper mobile (and that doesn't need to be fixed if this is TMS), but if the pain did all kick off only after the diagnosis, then @BloodMoon is correct and that's overwhelming evidence of TMS (which is great!)

Sorry I wasn't clear. The pain kicked off when my father was diagnosed with a terminal illness, but got worse when I was formally diagnosed with EDS and my daughter then felt validated in making me her pain buddy. (if that makes sense) It has stuck around because of the stresses compounded from death, new grandbaby, (DIL almost died) dog died, new puppy, mom's ailing health, and marriage issues.

What makes sense is that my brain took that diagnosis and ran with it. (you really are broken, or hypermobile, and this is why all the pain) Fibro is a catch-all disease, but EDS is genetic and is a connective tissue disease, so structural in nature. Now, that doesn't mean I should have pain 24/7, only when the EDS results in injury. (frozen shoulder, separated or dislocated shoulder, pulled muscles, rib slippage, etc.)

I think TMS is using it as an excuse to ratchet up the pain, though, because all it senses is danger.

Does that make sense?

 

[Adam Coloretti (coach)]

Sorry I wasn't clear. The pain kicked off when my father was diagnosed with a terminal illness, but got worse when I was formally diagnosed with EDS and my daughter then felt validated in making me her pain buddy. (if that makes sense) It has stuck around because of the stresses compounded from death, new grandbaby, (DIL almost died) dog died, new puppy, mom's ailing health, and marriage issues.

What makes sense is that my brain took that diagnosis and ran with it. (you really are broken, or hypermobile, and this is why all the pain) Fibro is a catch-all disease, but EDS is genetic and is a connective tissue disease, so structural in nature. Now, that doesn't mean I should have pain 24/7, only when the EDS results in injury. (frozen shoulder, separated or dislocated shoulder, pulled muscles, rib slippage, etc.)

I think TMS is using it as an excuse to ratchet up the pain, though, because all it senses is danger.

Does that make sense?

No worries! Yep I get you So what @BloodMoon said applies in both instances (both are evidence of TMS) because you would have still been hyper mobile before your father was diagnosed, so why didn't you have pain before then if the hyper mobility was/is causing the pain?

Again, I'm differentiating between widespread pain and specific location pain from a dislocation. I'm not questioning your hyper mobility, nor am I saying that localised pain from dislocations is TMS.

I would question, however, the classification of this as a disease (not for argument's sake, but if it helps with your fear, which it might because diseases are inherently scary and carry hopelessness, then that's a positive - this also relates just to hEDS, I'm not making comment on the others). I'm not coming at this from a strictly technical perspective, but to me something is a disease if it reliably carries with it certain symptoms. There are plenty of people, however (more than you'd expect from just abnormal cases), who are hyper mobile but have no pain (numerous studies show this, but I'll link the one below which applies to other things discussed below - it's from Dr Schubiner's new book). The fact too that someone can have a Beighton score of say 4 and have chronic pain (they wouldn't meet the criteria for the disease if they are under 50), and yet someone else can have a score of 7 but have no pain - do they still have a disease without symptoms? You could say well it is so because it increases the chance of injury and dislocation, but again the same study suggests no correlation between hyper mobility and injuries, nor any correlation between pain intensity and injuries of those who are hyper mobile vs those that are not (i.e. a separated shoulder is painful for everyone, hyper mobile or not).

https://peerj.com/articles/7625/#MainContent - there are more studies in the EDS section of Dr Schubiner's book (pg. 191).

If this is representative and we can take it at its highest (i.e. if hEDS doesn't cause chronic pain, doesn't increase the chance of injury, and doesn't make injuries more painful), then I wouldn't even call it a syndrome, let alone a disease. It's no different to disc degeneration (in general), in that it's a harmless abnormality. That is in no way discrediting your symptoms because they are real, but to me it's highly likely that the cause is TMS and not your hyper mobility.

I'll end this with a sort of summary from Dr Schubiner "Hypermobile Ehlers-Danlos syndrome (hEDS) has no identified genetic abnormality as opposed to rare types that are clearly structural in nature. It is seen quite commonly in people without pain and has not shown to be causal of pain" (Unlearn Your Pain (2026) - pg. 191).