Does an EDS diagnosis actually help at all?

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Functionally, what's the difference between knowing and not knowing?

Assume you don't have one of the major types that can lead to really bad symptoms and shortened lifespan. I could see how knowing that would be useful.

But let's say you're Hypermobile type and you have symptoms. It seems like a diagnosis will only stop you from seeking out other causes and wasting your time.

This could be a good thing, or a bad thing if the complacency given by a diagnosis leads to you missing other possible cofactors (like gut problems, or an infection, etc.) that are treatable.

What do you think?
 
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ryan31337

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This could be a good thing, or a bad thing if the complacency given by a diagnosis leads to you missing other possible cofactors (like gut problems, or an infection, etc.) that are treatable.
My experience has been the opposite: there is a great deal of recognised comorbidity with EDS and the interested doctors/specialist clinics will actively look for these issues and treat them individually.

You're right that there's not much you can do about the root hypermobility itself, but the level & quality of healthcare i've received has been far, far better since receiving the HSD diagnosis. There just isn't the equivalent specialist centres for CFS, at least not in the UK.

The significance of the health burden seems to be a lot better recognised than vs CFS too, so that can also be helpful if needing disability or other practical things.
 

SickOfSickness

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I am in the U.S. and agree with ryan31337. Because of an EDS diagnosis, it is likely much easier to get checked for / diagnosed with IBD, mast cell issues, autonomic issues (especially POTS), eye issues, Chiari and ICH, etc.

The hypermobility itself can be treated with supplements, physical therapy, splints/bracing and taping. Also it can help some people get disability accommodations for work/school and maybe living space adjustments or caregiver/assistance hours.
 

heapsreal

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Im interested in following this thread as my 19yo daughter has a pots diagnosis and probably EDS, which she is seeing a rhuematologist in the near future about. Im also interested to see any recommendations for Australians in reguard to drs, treatments etc that can be available here in Oz.

Cheers.
 
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My experience has been the opposite: there is a great deal of recognised comorbidity with EDS and the interested doctors/specialist clinics will actively look for these issues and treat them individually.

You're right that there's not much you can do about the root hypermobility itself, but the level & quality of healthcare i've received has been far, far better since receiving the HSD diagnosis. There just isn't the equivalent specialist centres for CFS, at least not in the UK.

The significance of the health burden seems to be a lot better recognised than vs CFS too, so that can also be helpful if needing disability or other practical things.
I am in the U.S. and agree with ryan31337. Because of an EDS diagnosis, it is likely much easier to get checked for / diagnosed with IBD, mast cell issues, autonomic issues (especially POTS), eye issues, Chiari and ICH, etc.

The hypermobility itself can be treated with supplements, physical therapy, splints/bracing and taping. Also it can help some people get disability accommodations for work/school and maybe living space adjustments or caregiver/assistance hours.
Ah, I didn't think of that. It's odd that you have to fall under the specific umbrella of some specialist to get checked out for stuff like mast cell issues, autonomic, etc. when your symptoms already line up with them.

Sometimes I think doctors think a little too algorithmically and don't use enough logic and investigative reasoning.
 

ryan31337

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They're simply not taught about these topics. There's very little awareness.

And even if they are aware of the conditions, they don't have the time/resources to spend on something that's new and contentious like this outside of a specialist clinic. Your average consultant here in the NHS is only interested in identifying a slam-dunk obvious diagnosis, one which might kill you if not treated, otherwise you're someone else's problem.
 

Sushi

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Assume you don't have one of the major types that can lead to really bad symptoms and shortened lifespan. I could see how knowing that would be useful.
I have hypermobile EDS. How does it help me to know? I know to avoid things that would make it worse like overstretching, it helps my physical therapist devise a program to strengthen muscles to compensate for lax ligaments. Before I knew about EDS, I damaged my ligaments further by overstretching. Also, it helped my interventional cardiologist deal with a prolapsed mitral valve (valves are connective tissue.). It was a caution when I was intubated for the "valve fix" as the anesthesiologist knew to use a protocol that would not stretch my neck.
 

rel8ted

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Functionally, what's the difference between knowing and not knowing?

Assume you don't have one of the major types that can lead to really bad symptoms and shortened lifespan. I could see how knowing that would be useful.

But let's say you're Hypermobile type and you have symptoms. It seems like a diagnosis will only stop you from seeking out other causes and wasting your time.

This could be a good thing, or a bad thing if the complacency given by a diagnosis leads to you missing other possible cofactors (like gut problems, or an infection, etc.) that are treatable.

What do you think?
Here is my story, you decide. I had been seeing a rheumatologist for 10 years, AFTER my hEDS dx, she said she thought I had hEDS, but chose not to dx it because it is no big deal. Except is WAS a big deal. It was such a big deal that I suffered cervical myelopathy due to my spinal cord being compressed in both flexion and extension views. It was very clear on the imaging, but it took years to get the imaging ordered because nobosy would second guess the rheumatologist who gave dx of inflammatory arthritis, Fibro, Cfs, and was continuously running labs looking for new autoimmune diagnoses. I had surgery this week to correct the structural issues, but reality says spinal cord damage is most likely to heal if it is treated within 6 months of onset. I have had progressive symptoms for over two decades. That much longer than 6 months and I would have loved the opportunity to choose whether or not to continue suffering for those many years, but my doctor made that choice for me. The odds of drastic improvement are slim, but at least the progression has most likely been stopped. I have lost running, walking, seeing properly, thinking clearly, and many other things to this issue. Do I think proper diagnosis of EDS is important? YES. I also think it is a doctor's DUTY to communicate such information. If I had chosen this path shame on me, but my doctor watched me become progressively more handicapped and refused to help. In my mind that is intentional harm.
 

rel8ted

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I know to avoid things that would make it worse like overstretching, it helps my physical therapist devise a program to strengthen muscles to compensate for lax ligaments. Before I knew about EDS, I damaged my ligaments further by overstretching.
Yes to all that @Sushi said as well. We are affected in many ways that are convenient to overlook because we take extra effort and care.
 
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Here is my story, you decide. I had been seeing a rheumatologist for 10 years, AFTER my hEDS dx, she said she thought I had hEDS, but chose not to dx it because it is no big deal. Except is WAS a big deal. It was such a big deal that I suffered cervical myelopathy due to my spinal cord being compressed in both flexion and extension views. It was very clear on the imaging, but it took years to get the imaging ordered because nobosy would second guess the rheumatologist who gave dx of inflammatory arthritis, Fibro, Cfs, and was continuously running labs looking for new autoimmune diagnoses. I had surgery this week to correct the structural issues, but reality says spinal cord damage is most likely to heal if it is treated within 6 months of onset. I have had progressive symptoms for over two decades. That much longer than 6 months and I would have loved the opportunity to choose whether or not to continue suffering for those many years, but my doctor made that choice for me. The odds of drastic improvement are slim, but at least the progression has most likely been stopped. I have lost running, walking, seeing properly, thinking clearly, and many other things to this issue. Do I think proper diagnosis of EDS is important? YES. I also think it is a doctor's DUTY to communicate such information. If I had chosen this path shame on me, but my doctor watched me become progressively more handicapped and refused to help. In my mind that is intentional harm.
Thanks for sharing. Can you give me a sense of the symptom onset timeline?
 

SickOfSickness

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The problem with getting the other things diagnosed (without the EDS diagnosis), is that the symptoms seem far too numerous and widespread. The patient is seemingly complaining of all sorts of things. The doctors lean toward a psychiatric problem because they learn that patients rarely complain about 3 or more separate things at once unless they have a psychiatric problem.

However, if doctors know that there is a problem like EDS, suddenly it makes sense to investigate all those. Plus, a lot of patients with EDS have symptoms that aren't as specific. So again, the doctors don't understand unless there is something to "connect the issues" like EDS. That's why the specialist Heidi Collins is teaching doctors that patients with many issues that they "can't connect" may have EDS.

Most doctors are not going to think that way until after a specialist already gave the EDS diagnosis.
 

ryan31337

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Good point well made @SickOfSickness.

The way doctors are tuned to think is probably quite surprising to most patients. As a patient you'd probably expect a doctor to become more motivated and take you more seriously with each of the many ailments you can describe. But its actually the reverse, listing more and more symptoms that don't fit a predetermined pattern of common illness will switch the doctor off to otherwise plausible explanations because people with symptom X don't usually also complain of symptoms Y and Z.
 

SickOfSickness

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Oh, and many people with EDS show signs of anxiety. So that makes the doctors think psychiatric even more. However, if they know that EDS patients do commonly have anxiety AND they still have many other "real" problems, then they can accept that the anxiety/psych stuff is just one issue, not the underlying issue.