hEDS/POTS/Gut Issues Link? Help

[Neomorph]

Hi everyone, here I am making another post.

Based on some info/symptoms I have shared in my other posts, some of you suggested that I get checked out for Hypermobile Ehlers Danlos (I have confirmed POTS). Does anyone else here have hEDS, another hypermobility condition, etc? I've been watching lectures that some of you have provided and I'm very suspicious that I may have it. However, my PCP is kind of... unhelpful... to put it nicely. I voiced my concerns to him and he basically wouldn't entertain the idea or refer me to see any specialists. He told me that an hEDS diagnoses "wouldn't help much anyway", so I shouldn't bother pursuing a diagnoses. But, I have also read that a proper and quick diagnoses is essential to improving quality of life. So I guess I'm wondering, do you all think pursuing an hEDS (or other hypermobility spectrum disorder) diagnoses is worth it? I'm hesitant to just self-diagnose. I also don't know where to go from here, because my PCP won't refer me for hEDS. 

Secondly, does anyone know about the link between hypermobility and gut issues? I have had chronic constipation, periods of painful bloating and gas, and diarrhea (sorry, TMI alert!) for over a year now. I feel like my guts work on either all or nothing - I practically have to force myself to have diarrhea to get things moving. My doctor recommended fiber supplements but that makes my symptoms SO much worse. The bloating is unbearable. Luckily, I bugged my doctor enough that he relented and referred me to a GI specialist. Currently waiting on them to get back to me. Does anyone have any advice or info in the meantime? My gut issues are one of the main reasons I'm suspecting hEDS, as I hear that is common. But I also have random joint and muscle pain, cracking/popping joints, easy bruising, and what I think are joint subluxations. I went out to lunch with a friend, and when I stood up from the booth I felt like I could no longer put full weight on my left leg. I could feel instability and discomfort in my left hip. It kind of just "went away" as I walked/limped around some more; could this be the joint going back into place? I just feel like I have many symptoms and twinges that I can't otherwise explain.

Would love to know more about hEDS, diagnostic processes, gut health, etc. if anyone knows more! Thank you. 

[Pistol]

@Neomorph Your PCP is right - A diagnosis of hEDS would not change the treatment or prognosis of the POTS diagnosis. It in itself is not a treatable "condition", so simply knowing you have it would not be of value to you other than having an explanation as to the possible cause of your POTS. It could simply explain the mechanism behind the symptoms. 

As to your GI issues - what you describe sounds like what many members of this forum struggle with, including myself. Since the ANS also controls the GI tract these types of symptoms are common. Some here experience a sluggish digestion ( as in constipation, bloating and slow digestion ) and others see diarrhea, acid reflux and nausea. I have both - some times I have gastroparesis ( when the food does not get pushed through the gut and lies in the stomach for a long time ) and other times I have IBS-D ( irritable bowel syndrome with diarrhea ). I am under the care of a GI specialist for many years and had every possible test done - my symptoms are said to be a product of dysautonomia. 

Although i needed several GI meds in the beginning of my illness to heal the GI tract I now only take a acid blocker and occasional nausea meds. What has helped me to calm my GI tract is mostly WHAT I eat ( low carb, high protein ) and WHEN I eat ( I avoid large meals but eat small helpings at least six times a day ). I also eat slow, chew well and minimize drinking while eating, i drink afterwards. 

I hope you will be able to see the GI specialist soon and that they will be able to help you. In the meantime you may want to try to determine what foods make you feel bad and what times of the day you eat. Many people here have a food-diary - this can help you determine what is good for you and what you do not tolerate. Simply keep track of what and when you eat and what your body does after the meals, when you go to the bathroom etc. This will be helpful for the doctor as well. 

[Sushi]

I have hEDS as I’m sure a number of us here do. As @Pistol mentioned, it is not really treatable (at least not by conventional medicine) and there are not many specialists who would be willing to diagnose it. But, if you know that you have hEDS, there are precautions that you can take against exacerbating it. Since it affects connective tissue and heart valves are made of that, with a diagnosis of EDS, it is good to have your valves checked with an echocardiogram.

A physical therapist helps me a lot, giving me exercises to strengthen muscles to support ligaments and also “putting my joints back in place” every few weeks. Also, EDS patients respond differently to anesthesia so it is information that they would need. Good luck with the GI doc, though not all of them will know much about it so it would be good to check with them before making an appointment to find someone knowledgeable.

[MikeO]

5 hours ago, Pistol said:

I also eat slow, chew well

pretty sure OMA preached this to me. Chew 32 times. I have not been doing it.

[Sarah Tee]

I suspect there would be lectures from the Ehlers-Danlos society or other groups on the topic of what a diagnosis might mean and how it can be helpful (or not) in life.

(It comes up endlessly on the Reddit groups, although whether reading those would help or not, I don’t know.)

You could get access to specialist physical therapy. It might lead to better understanding of your GI issues. Plus it could have an influence on decisions you make in your life, medical and general.

Do you know if the gastroenterologist you got referred to is knowledageable about dysautonomia? If so, they will probably know about hEDS as well.

***

Also, I am feeling a bit snarky about doctors this week, but shouldn’t your doctor be discussing this issue with you as an informed adult, not “refusing to entertain the idea”.

[Neomorph]

@Pistol That all makes sense. I understand hEDS isn't really treatable, but it sounds like there are precautions I could take (if I do have it)? As @Sushi was explaining, it sounds like they have the help of a physical therapist. I'm guessing based on how picky my insurance has been, I would need an official diagnoses in order to receive this kind of help. I guess I'm worried about my "hEDS-like" symptoms progressing and causing more issues down the road, so I'm interested in preventative measures, even if that is things like exercise and supplements. The link between hEDS and anesthesia is interesting; I have woken up during surgery and have memory of it, and I wonder if that could be why. 

As for digestive issues, I will try keeping better track of what I eat and my symptoms. I am pretty horrible at keeping a food diary. I try to make "mental note" but that doesn't always work out. I think I would benefit from allergy/intolerance testing.

@MikeO I will try that! Anything to make me more comfortable. 

@Sarah Tee Those are things I was considering as well. I feel like a diagnoses would be helpful for preventative care/general wellness at the very least. I have no idea if my GI specialist knows anything about dysautonomia. My PCP just kind of refers me to whomever he sees fit. I think he referred me to a GI office, I might be able to do some research and request a specific doctor when they schedule me. And yeah you would think he would discuss these things with me, especially because I was right about having POTS. I didn't get to tell him about all of my hEDS-like symptoms. He cut me off when I said "fatigue", ordered a sleep study, talked about depression, then shooed me out of his office 😂

[Sarah Tee]

@Neomorph, if the GI specialist isn’t helpful, it is worth trying a dysautonomia or EDS support group that covers your region on Facebook. They often have a list of specialists recommended by fellow patients. Sometimes people see a neuro-gastroenterologist.

I do hope you can get some better care and that things turn around a bit for you. I had ulcerative colitis for some years and can sympathise with the digestive disruptions.

[Pistol]

5 hours ago, Neomorph said:

He cut me off when I said "fatigue", ordered a sleep study, talked about depression, then shooed me out of his office 😂

Urrrrrrrrg! Sorry about that, that is so ignorant!

[MikeO]

7 hours ago, Neomorph said:

I will try that! Anything to make me more comfortable. 

take smaller bites and chew well as. this does help. beats putting your steak dinner in the blender Lol

[MikeO]

On 9/18/2023 at 3:55 AM, Sarah Tee said:

Reddit groups

just be careful as to what one reads in the reddit groups. even in the diabetic subs as soon as one cites ketoacidosis or a link to a drug the post is deleted. kinda make you wonder. 

[Neomorph]

@Pistol I know, right? Thanks for your advice and support everyone. @MikeO @Sarah Tee @Sushi I'm finding that is tough to come by! I suppose I will see how things go with the gastroenterologist and see if I can't get more help from there.

[Sushi]

On 9/18/2023 at 11:40 PM, Neomorph said:

As @Sushi was explaining, it sounds like they have the help of a physical therapist. I'm guessing based on how picky my insurance has been, I would need an official diagnoses in order to receive this kind of help.

My PT has not used any codes mentioning EDS but rather codes that refer to specific symptoms--so I don't think you absolutely need an EDS diagnosis in order for insurance to pay for PT.

If or when you do need anesthesia, an anesthesiologist I am in touch with says that it is very important to mention EDS, due to the differing response to anesthesia meds, differences in the skin and connective tissue, etc. 

[MikeO]

i have not read the whole post but a marker of EDS is the ability is to hyper extend a finger back to the wrist. I have had joint issues. left knee and right shoulder.

I would have your Doc do some blood panels looking for deficiencies before seeking out a specialist. just my take.