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Hypermobility Ehler's Danlos Syndrome HELP


Splash1
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My daughter who just graduated college and is almost ready to begin a three year graduate program has just been seeing doctors since March, PCP, Orthopedics, Rheumatology  and the current idea is she has hEDS.  All bloodwork, echo cardiogram,  x-rays and on MRI came back "normal".  She is in so much pain, mostly hips and knees, that she currently is using a cane to walk (she is my daughter that will hike ten miles with dh like it's nothing).  We went to doctor because of insomnia (extreme 0-3 hours a night), she had joint pain, would sometimes lose balance or knees would give out, chronic fatigue, asthma, horrible pain level 9/10 periods, dizziness,  nausea, etc.  Blood pressure is 90/54.  Today she lost vision for a couple of minutes, became weak and almost passed out,  So far the only thing they've recommended or prescribed is physical therapy and Advil/Tylenol.  She did four weeks of physical therapy in April but it didn't change anything and he told her she was done.  Only good thing is all the pain is causing her to sleep now, maybe as much as five hours in a 24 hr period.

 

Does anyone have knowledge of this disease that can help me guide her to.  It has gone from annoying and a  little painful to extreme in less than four months.  I just feel like we're just left to figure everything out on our own.  Geneticist wait is currently over a year to see if it is another variant that  has more involved systems.  

 

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My oldest is on the waiting list for EDS testing. So, I don't know much yet, although having read about it, I probably have it as well. 

Middle has POTS, probably due to EDS. With her pre-syncope (almost passing out), that is an area you can look at that does have some therapies that will help. POTS is Postural Orthostatic Tachycardia Syndrome. First defense is lots of water, increase salt intake, and compression socks/leggings. There are some meds that help with POTS. 

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Given her near fainting I wonder if she also has POTs.  It can be comorbid with hEDS.  I recommend watching these videos to see how they can interact.


Is it possible she had COVID?  It triggered my underlying hEDS, POTs and MCAS issues.  

 

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Keep the genetics appointment!!! 

I have friends with EDS and a child with a different connective tissue condition. 

Some people have considerable pain--this is a group that has a lot of information and educational webinars: https://www.chronicpainpartners.com/   ETA: This information is specific to EDS, not just pain.

Regarding the low BP, near syncope, etc.--EDS is highly correlated with POTS and other dysautonomias. http://www.dysautonomiainternational.org/

She might want to see an immunologist that specializes in figuring stuff out. Also, people with autoimmune stuff often have a time between being symptomatic and having it show up in bloodwork or recognizable symptoms. If they are good at responding to their bodies, they might even adopt practices that make them feel better and inadvertently stave off a diagnosis. I know multiple people this has happened to. ETA: connective tissue disorders and autoimmune disorders are not mutually exclusive by any means.

Edited by kbutton
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Honestly, the sleep issue alone could magnify everything.  Most people are going to feel really cruddy over time with that little sleep.  When things started to change, what else changed for her?  Diet, stress, exercise, personal stuff, etc anything?  

I would 100% be following up on every angle.  I would absolutely see the geneticist and an immunologist.  But assesment/treatment for any related depression, anxiety, etc may also be helpful and could possibly help with sleep disturbances, etc.  I struggled with a chronic health issue for a while (and honestly, it's an ongoing life long thing) but until I got those ducks in a row too did I really start to see improvement.  Autoimmune systems can be very tied into stress responses.  

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I know far, far, far more than I want to.  All three of my kids, plus two of their partners (one was met online and bonded over EDS, the other is apparently random coincidence).  I also know a slew of other young adults with this, friends of my kids, kids of people here online.  They say it's a rare disease, but I know more people that have this condition than any host of other 'common' conditions combined.

There's a slew of things to check for that can be comorbid with EDS - mitral valve prolapse (none of my kids have had this), occult tethered cord (ding, ding, we've hit the jackpot on this one - first causes leg weakness/pain and digestive/bladder/elimination problems, long term can cause permanent nerve damage and even total organ shutdown), do get the genetic testing to figure out if it's one of the more specific ones (esp. if it's the vascular type), or if it's 'hypermobile' type, which is the most common, but I very much suspect is just a bunch of other types lumped together that they haven't figured out yet.  Also most everyone seems to also have POTS (postural orthostatic tachycardia syndrome) and MCAS (mast cell activation disorder) and sleep problems.

There's no real allopathic treatment for this, as you've found out.  Fixing things like the tethered cord or a valve prolapse and treating POTS (drink a lot and eat lots of salt) and MCAS (there are both supplements and allopathic drugs for this) is important and can vastly help quality of life if these things exist, but do not fix the underlying problem, which is lifelong and has no cure.

Most helpful, other than treating all the above symptoms as needed, has been PT specific to EDS - there's a great book by a specialist that you can bring to a PT that is not familiar - 'regular' PT can do more harm than good, and PT for EDS is ongoing, not a short-term thing, although once you've got the exercises down, it can be done at home with periodic tune-ups. (we have spent years tussling with the insurance companies to get overrides to the yearly limit on PT visits).  One of mine prefers aquatherapy.  And many have found at least some of the supplements on the Cusak protocol effective - not everyone reacts the same, but for example PQQ was super-helpful for one of mine, and I know a lot of people who have had great luck with the aloe.  My kids are all still in their early 20s, but we've already been there with canes, wheelchairs, surgeries, and a whole host of treatments for the constellation of symptoms.  One of my kids is now training to be a PT, and hoping to specialize in EDS, because of how much it has helped them.  They especially like their PT that also does cranio-sacral therapy.  They have also tried dry-needling, acupuncture, and a variety of painkillers, the latter of which were not as helpful as the other things listed (like, the right kind of PT and treating the MCAS).

Edited by Matryoshka
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1 hour ago, FuzzyCatz said:

Honestly, the sleep issue alone could magnify everything.  Most people are going to feel really cruddy over time with that little sleep.  When things started to change, what else changed for her?  Diet, stress, exercise, personal stuff, etc anything?  

I would 100% be following up on every angle.  I would absolutely see the geneticist and an immunologist.  But assesment/treatment for any related depression, anxiety, etc may also be helpful and could possibly help with sleep disturbances, etc.  I struggled with a chronic health issue for a while (and honestly, it's an ongoing life long thing) but until I got those ducks in a row too did I really start to see improvement.  Autoimmune systems can be very tied into stress responses.  

 

Insomnia is comorbid too, isn't it? Alongside anxiety and depression. It's all a big tangle of ugh.

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Quote

They say it's a rare disease, but I know more people that have this condition than any host of other 'common' conditions combined.

It's why their mascot is the zebra, isn't it? Because doctors will insist on saying that little thing about hoofbeats and zebras, and I'm sure that has its place but EDS is just one of a long list of conditions that happen to be way more common than most people ever realized. EDS, non-circadian disorders, developmental agnosia including but not limited to faceblindness, developmental foreign accent syndrome - actually, at this point I'm just rattling off a long list of conditions I know are often found among the autistic population, but still.

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I'm sure there's a Facebook group that'll have a lot of ideas.

I'm not a big user of FB at all. But when I was diagnosed w/ a rare thing it was comforting to "talk" to others on FB.

Also, just sharing. I follow a blogger who has EDS. She's a fashion blogger but very open about having EDS.

Hang in there. ♥

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2 hours ago, Selkie said:

Has she been tested for Lyme and other tick borne diseases?

Agreed - joint pain, nausea, etc can be various tick borne/insect vector diseases. A full panel should be run. Especially since it was sudden onset - went from hiking miles to needing a cane!

Also, is she medicated to sleep? Nothing will get better without some sleep. 

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I am diagnosed with hEDS. I really don't have much to add that others haven't already said. I have a whole slew of comorbid conditions, including autoimmune conditions. They have always run in my family so I suspect many others have hEDS just not diagnosed or known to me.

In the way of treatment, most of mine is directed at treating the symptoms (so for example, levothyroxine for my thyroid condition) and pain management. A daily regiment of meloxicam helps. Without it, I'm completely bedridden everyday in pain. With it, I have good pain days when I don't need stronger pain meds and bad pain days where I do need stronger pain meds.

My hEDS didn't come on suddenly. It explained various different one off symptoms I've had all my life as a connected whole. If you can't think back to her childhood and remember a ton of just little odd symptoms that can suddenly be explained as part of hEDS, I would ask for more labwork or a second opinion as some of the others have suggested. 

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I know several families with someone with one form of EDS or another. It seems like the different types can be really different for different folks. One of my friends mentioned that some of the Facebook groups have been very helpful.

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2 hours ago, sweet2ndchance said:

I am diagnosed with hEDS. I really don't have much to add that others haven't already said. I have a whole slew of comorbid conditions, including autoimmune conditions. They have always run in my family so I suspect many others have hEDS just not diagnosed or known to me.

In the way of treatment, most of mine is directed at treating the symptoms (so for example, levothyroxine for my thyroid condition) and pain management. A daily regiment of meloxicam helps. Without it, I'm completely bedridden everyday in pain. With it, I have good pain days when I don't need stronger pain meds and bad pain days where I do need stronger pain meds.

My hEDS didn't come on suddenly. It explained various different one off symptoms I've had all my life as a connected whole. If you can't think back to her childhood and remember a ton of just little odd symptoms that can suddenly be explained as part of hEDS, I would ask for more labwork or a second opinion as some of the others have suggested. 

I know a lot of people for whom it has come on at puberty or somewhere in their teens/early twenties.  Looking back, it seems that the biggest tell with my kids pre-puberty was constipation, but I didn't really realize how bad it was, and when we did see docs for it, the docs all just shrugged and said 'take Miralax'.  I never would have thought from that that, 'oh, they have a connective tissue disorder and tethered cord'...

EDS does seem to get worse with female hormones (which of course can loosen ligaments), so some women seem to have more symptoms, and puberty (or pregnancy) can bring on worsening symptoms in many women.

There also seems to be times where the body is stressed and can bring on a crisis - one of my kids got much worse after being in the sun too long - they got an allergic reaction (hives all over), which seems to have led to chronic MCAS (EDS itself is not autoimmune, MCAS does involve misfiring immunity, and somehow these are tied up with each other).  This is a kid who was not allergic to a single thing in childhood.  Now they're on a couple of different very expensive meds to manage the MCAS (and the meds for that have really helped the other EDS symptoms and decreased overall pain).

Edited by Matryoshka
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2 hours ago, ktgrok said:

Agreed - joint pain, nausea, etc can be various tick borne/insect vector diseases. A full panel should be run. Especially since it was sudden onset - went from hiking miles to needing a cane!

Also, is she medicated to sleep? Nothing will get better without some sleep. 

Lyme and EDS are, sadly, not mutually exclusive.  I know people with both (including one of my kids, though the Lyme is now resolved - but I blamed many of her EDS symptoms on the Lyme for awhile...)

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19 hours ago, historically accurate said:

My oldest is on the waiting list for EDS testing. So, I don't know much yet, although having read about it, I probably have it as well. 

Middle has POTS, probably due to EDS. With her pre-syncope (almost passing out), that is an area you can look at that does have some therapies that will help. POTS is Postural Orthostatic Tachycardia Syndrome. First defense is lots of water, increase salt intake, and compression socks/leggings. There are some meds that help with POTS. 

Thank you, I'm sorry to hear you're going through this as well.

 

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21 minutes ago, Splash1 said:

No, she hasn't.  Rheumatologist mentioned it but then decided she didn't fit the criteria.

Ugh.  There's so much variability in what Lyme shows up as, that that's just stupid.  My dd who did get a positive Lyme test, it was just headaches and stomachaches - not at all the typical symptoms I would've thought to look for.  We missed the tick, and never a bullseye.  I thought it must be strep - after the second negative strep test, her regular pedi doc was the one who suggested a Lyme test (did both ELISA and Western Blot to confirm).  Problem was, after that resolved, any newer mysterious symptoms I was sure must be Lyme coming back when it was EDS...

Anyway, Lyme and EDS do have a lot of overlapping symptoms, could be either or both.  But Lyme you can treat - can't hurt to at least get a test.  And I know that Lyme can also be a trigger to set off EDS symptoms - I've heard from so many people whose symptoms were low-level or manageable enough until some kind of health crisis kicked things into high gear.  I know EDS is a genetic condition, but I'm seriously thinking that for many people there's some epigenetics involved, or dormant genes being 'switched on' by something environmental or other stress.  Because all three of my kids have it, and I don't, and I don't think dh does.  One of my kids thinks it's him and his symptoms are just super-low 'cause he's a guy.  Who knows?  But I know *so many* young adults with this and not a single person my age.  Something is going on...

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17 hours ago, ktgrok said:

Agreed - joint pain, nausea, etc can be various tick borne/insect vector diseases. A full panel should be run. Especially since it was sudden onset - went from hiking miles to needing a cane!

Also, is she medicated to sleep? Nothing will get better without some sleep. 

DON'T QUOTE, please.  

It can be, and that's what I thought at first for a family member who went from being an active dancer to using a walker in 7 months. Very sad! She has been thoroughly tested for tick-borne diseases twice -- nothing positive.  She happened on a chiropractor who specializes in manipulation of the atlas, and it's the only place she gets relief.  

Lawyer&Mom's videos linked above rang lots of bells for me (regarding her constellation of symptoms) and I'm forwarding them to her. 

 

Edited by Halftime Hope
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@Halftime Hope not quoting, as per your request, but one of my kids was an ardent dancer too until the EDS hit.  It first manifested in injury and pain they tried to work through until they couldn't.

Part of the PT for EDS does include manipulation, but not just of the back.  Ribs and hips seem to go out of place all the time. Especially hips. Dh has learned the trick to putting hips back (learned from our PT student, who learned it from their EDS PT), which he does regularly for all the kids (for some reason I can't figure it out, apparently not my skill set).  But having something out of place can be a cause of a lot of the pain.  Part of the reason that the right kind of PT works is it strengthens the muscles which are having to compensate for the overly lax tendons/ligaments.  And when something's out of place, it causes pain, and having someone knowledgeable and gentle be able to realign things is amazingly helpful.  But some chiropractors can be troublesome for EDS, as a super-gentle touch is needed, and you have to beware of overcorrection (especially in the neck - chiari is another common EDS co-morbidity)

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Thank you for all the responses and ideas of what to look for, test, etc.  She was adopted from Korea and we have no genetic information to go on.  We went to National Jewish Hospital to see sleep, asthma, etc specialists.  She said she was no help except for the asthma part.  She did encourage us to go to several different specialists because she thought her constellation of symptoms was concerning and pointed to an underlying problem, she just didn't know what.  Sleep has been a problem since puberty and she's been seeing a sleep specialist for five years.  Currently Trazadone takes her sleep from 0-2 hours to maybe 4hours a night.  They are also thinking that it is possible she is sleeping more but her brain just doesn't recognize it as sleep so she never feels rested.  Next week she has a bunch of breathing tests at NJH and an appointment to get a sleep study approved per the new sleep psychologist recommendation.  

 

Some of this is terrifying to me, I have another daughter with a ultra rare life threatening/shortening disease and a sister in law that has EDS, POTS, Lymes, Dysautonomia, Immune deficiency, congestive heart failure, etc and has been bed bound for the past ten years and will probably die in the next twelve months.  I'm trying to remain calm as I guide her and go with her to specialists.  It's just hard.  Also reading all this information, I see my oldest son, also adopted, in EDS/hypermobility as well.  It explains a ton of his experiences.

 

 

Thank you again for sharing your experiences, knowledge and ideas.

 

Kimberly

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20 minutes ago, Matryoshka said:

@Halftime Hope not quoting, as per your request, but one of my kids was an ardent dancer too until the EDS hit.  It first manifested in injury and pain they tried to work through until they couldn't.

Part of the PT for EDS does include manipulation, but not just of the back.  Ribs and hips seem to go out of place all the time. Especially hips. Dh has learned the trick to putting hips back (learned from our PT student, who learned it from their EDS PT), which he does regularly for all the kids (for some reason I can't figure it out, apparently not my skill set).  But having something out of place can be a cause of a lot of the pain.  Part of the reason that the right kind of PT works is it strengthens the muscles which are having to compensate for the overly lax tendons/ligaments.  And when something's out of place, it causes pain, and having someone knowledgeable and gentle be able to realign things is amazingly helpful.  But some chiropractors can be troublesome for EDS, as a super-gentle touch is needed, and you have to beware of overcorrection (especially in the neck - chiari is another common EDS co-morbidity)

I am passing all of this along to her; thank you.  I'm not sure if she has underlying EDS or not. She does have a history of numerous physically traumatic events, among them a car accident. She'll have to see if she can piece it all together retrospectively.  

I will ask you another PMed question, if you don't mind.  

 

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28 minutes ago, Splash1 said:

Thank you for all the responses and ideas of what to look for, test, etc.  She was adopted from Korea and we have no genetic information to go on.  We went to National Jewish Hospital to see sleep, asthma, etc specialists.  She said she was no help except for the asthma part.  She did encourage us to go to several different specialists because she thought her constellation of symptoms was concerning and pointed to an underlying problem, she just didn't know what.  Sleep has been a problem since puberty and she's been seeing a sleep specialist for five years.  Currently Trazadone takes her sleep from 0-2 hours to maybe 4hours a night.  They are also thinking that it is possible she is sleeping more but her brain just doesn't recognize it as sleep so she never feels rested.  Next week she has a bunch of breathing tests at NJH and an appointment to get a sleep study approved per the new sleep psychologist recommendation.  

 

Some of this is terrifying to me, I have another daughter with a ultra rare life threatening/shortening disease and a sister in law that has EDS, POTS, Lymes, Dysautonomia, Immune deficiency, congestive heart failure, etc and has been bed bound for the past ten years and will probably die in the next twelve months.  I'm trying to remain calm as I guide her and go with her to specialists.  It's just hard.  Also reading all this information, I see my oldest son, also adopted, in EDS/hypermobility as well.  It explains a ton of his experiences.

 

 

Thank you again for sharing your experiences, knowledge and ideas.

 

Kimberly

Wow, that's a lot of weight for you to carry.  Take good care of yourself, too, Kimberly! Wishing you well. ❤️ 

Edited by Halftime Hope
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1 hour ago, Matryoshka said:

But some chiropractors can be troublesome for EDS, as a super-gentle touch is needed, and you have to beware of overcorrection (especially in the neck - chiari is another common EDS co-morbidity)

I think that overcorrection is less likely with a chiropractor who does atlas adjustment. I see one of those, and everything he does is gentle. He also uses an impulse gun that seems to relieve/prevent myofascial pain, which I think is common with EDS (we have hypermobility in my family, but we don't seem to rise to the level of having EDS). 

Do they routinely screen for chiari if a diagnosis of EDS is established? I have a relative who had the malformation and had surgery, but he was in his 70s, I think, when they found it. 

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I assume she’s been tested for sleep apnea?  Super common with hEDS.  My c-pap has been a godsend.

 I would consider the possibilities of comorbidities, because there could be easy ways to see improvements.  For example, there are treatments for MCAS.  I’m on a regime of H1/H2 blockers (for my Zyrtec/Allegra and Pepcid) that have improved my MCAS but also stabilized my POTs.  It’s all a work in progress, but I don’t feel like it’s all spinning out of control like I did last January.  Improvement is possible.  

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8 minutes ago, kbutton said:

I think that overcorrection is less likely with a chiropractor who does atlas adjustment. I see one of those, and everything he does is gentle. He also uses an impulse gun that seems to relieve/prevent myofascial pain, which I think is common with EDS (we have hypermobility in my family, but we don't seem to rise to the level of having EDS). 

Do they routinely screen for chiari if a diagnosis of EDS is established? I have a relative who had the malformation and had surgery, but he was in his 70s, I think, when they found it. 

I don't think there's anything 'routine' about what they screen for with EDS - it's dependent on how knowledgeable a particular doc is about EDS, what their specialty is, and I think also what they've seen before.

BTW, there's apparently a spinal surgeon affiliated with a big EDS group that has had really bad outcomes with surgeries similar to what my kids and others I know have had - he's treating the same problem, but his method is different.  He also doesn't take insurance.  I think his name starts with an H.  Having tethered cord released has been a *huge* improvement for everyone I know who's had it (although the earlier you get to it, the better the result, we know one person who was in their 40s by the time he had it, and it didn't go well - at some point nerve damage can't be reversed), but I wouldn't see that doc.

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4 minutes ago, Lawyer&Mom said:

I assume she’s been tested for sleep apnea?  Super common with hEDS.  My c-pap has been a godsend.

 I would consider the possibilities of comorbidities, because there could be easy ways to see improvements.  For example, there are treatments for MCAS.  I’m on a regime of H1/H2 blockers (for my Zyrtec/Allegra and Pepcid) that have improved my MCAS but also stabilized my POTs.  It’s all a work in progress, but I don’t feel like it’s all spinning out of control like I did last January.  Improvement is possible.  

Forgot to mention that one (so many things go with this!)  One of my kids has a C-pap and it's been a big help.  She's also on beta blockers because her hr was so high at one point that was also interfering with her sleep.

And YES, improvement is possible!  It's a mutiheaded hydra and there's no straight-up cure, but it's also not give-in-and-suffer.  All of mine have had improvement with treating the various symptoms.  My two who have had the spinal surgery no longer use wheelchairs (I think one might still have theirs around for flare days, but it's not a regular thing anymore).  Orthotic shoes have also helped with leg/nerve pain - anything that can keep stuff from going out of alignment...

Edited by Matryoshka
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How can they say that she doesn't meet the criteria for a tick panel? Sudden onset joint pain, fatigue, weakness? How on earth does that not fit the picture of several vector borne diseases? That's so weird! I can tell you if you had a dog with those symptoms, we would sure as shooting run a full tick panel! As well as look for autoimmune diseases - in humans I'm thinking celiac, lupus, RA, etc. 

You don't pick as a diagnosis the the thing that has no test for it until you rule out the stuff you CAN test for!

Edited by ktgrok
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56 minutes ago, kbutton said:

I think that overcorrection is less likely with a chiropractor who does atlas adjustment. I see one of those, and everything he does is gentle. He also uses an impulse gun that seems to relieve/prevent myofascial pain, which I think is common with EDS (we have hypermobility in my family, but we don't seem to rise to the level of having EDS). 

Do they routinely screen for chiari if a diagnosis of EDS is established? I have a relative who had the malformation and had surgery, but he was in his 70s, I think, when they found it. 

So I went to see the same chiropractor, and he did xrays first to determine angles (calculate how much correction in which direction), and also used an activator. (I'm not sure if that's the same as an impulse gun.) She gets so much relief from it that she has come to love the sound.  :-)  

I'm really glad I popped in to read this thread -- thank you to all who have shared! 

Edited by Halftime Hope
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7 hours ago, Splash1 said:

No, she hasn't.  Rheumatologist mentioned it but then decided she didn't fit the criteria.

Take her to her GP or any other doctor and recite a few more things from the criteria list 🙄

Doctors get very 'stuck' on certain things. I always have to state a fever higher than I have in order to get antibiotics, in spite of a lengthy history of severe bronchitis that just gets worse and worse without them until finally I get the dang fever and they write the scrip. I decide to skip the 'getting much worse' step as much as possible. 

22 hours ago, Matryoshka said:

 Looking back, it seems that the biggest tell with my kids pre-puberty was constipation, but I didn't really realize how bad it was, and when we did see docs for it, the docs all just shrugged and said 'take Miralax'.  I never would have thought from that that, 'oh, they have a connective tissue disorder and tethered cord'...

 

So maddening! 

Every doctor ever: Make sure to tell your doctor right away if you have a change in bowel habits, or extended bowel problems. 

Also every doctor ever: Eh, take Miralax. 

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3 hours ago, katilac said:

Take her to her GP or any other doctor and recite a few more things from the criteria list 🙄

Doctors get very 'stuck' on certain things. I always have to state a fever higher than I have in order to get antibiotics, in spite of a lengthy history of severe bronchitis that just gets worse and worse without them until finally I get the dang fever and they write the scrip. I decide to skip the 'getting much worse' step as much as possible. 

 

so I'm not the only one that does this, lol? I'll be dizzy and unable to function from fluid in my ears, want to drill a hole in my sinuses, with the class ic presentation of a cold that started to resolve, then got worse as it became a secondary bacterial infection,  but if it hasn't been the right number of days since the initial symptoms started they won't give me/kids meds. So I may um...round up...the length of time it has been. I started doing this after the third time I took a kid in, was told to wait, and call if it got worse, only to be back the next day in their office with a much sicker kid who now could get antibiotics. I'm like, I'm trying to avoid the miserable stage and start treating it at just "getting worse and feel pretty horrid" stage!

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