Anyone with Ehlers Danlos/Pain Management /Symptoms

[ABetterWay]

I apologize...unsure where to put this. I'm not sure it fits well anywhere.

Does anyone here have Ehlers Danlos Syndrome? I STRONGLY suspect I do. I am in a hell of a lot of pain and very discombobulated. That's the best way I can put it. I have many symptoms. I'll go over more another time. I'm in horrendous pain right now and not in the mood. But severe, life-stopping pain, weakness, popping, I sou d like a bowl of fuckin rice crispies lol.

I think I have POTS and TOS (thoracic outlet Syndrome), as well. I'm not a hypocondriac. If you want to suggest that I am, please don't, just go away.

I'd like to talk to people with eds and see if they think my story sounds like it's possible. I accept that I could be wrong. I don't think I am.

It's either rare or underdiagnosed, so I just wanna see if anyone here has it and talk to them about how they manage the pain. I want to die. It's so severe and debilitating.

I'll post more details if people with eds respond.

If not, no need to waste time.

Thanks ahead to the mod who moves this thread outta homeless.

So, edsers, what do you take and do for the awful pain?

Thank you.

Peace. Be well.

 

[aq.]

>>> healthy living




mod note: please feel free to move if you don't think this thread suits your forum.

 

[ABetterWay]

Thank you.

I actually revisited this thread to suggest maybe Healthy Living earlier, I thought I posted that, but I must've messed up.

Well, at least I was thinking in the right direction ;-) Haven't been a member too long yet; still getting to know all of the forums.

Have a good night.

 

[junglejuice]

I have it, with mainly joint hyperflexibility and skin hyperelasticity.
I've never felt the need to get the actual genetic test but I definitely have it.

Here's how I feel my best.

-Work out four or five days a week. Weights and cardio.
-Eat right. It's like carrying a bunch of weight around is tiring? My my.
-Take fish oil, MSM/Glucosamine/Chondroitin (general joint formula), and a multi every day.
-Drink a gallon of water a day.

I also recommend getting some body work done like going to a chiropractor or other practicioner. I've had best results with a Strain and Counterstrain therapist. When you deal with very lax joints and loose ligaments, gravity and daily routine definitely take a toll. I was dealing with constant, chronic neck pain that impacted my life every day. I went to a chiropractor who gave me a few adjustments which helped, but where the pain really went away was with S/CS. It turns out my neck pain wasn't from my spine, but by locked ribs. I was also dealing with anterior pelvic tilt which was affecting my walk, making my feet splay out. Bottom line, a few sessions, and I grew a tiiiiny bit taller from fixing the pelvic tilt, my feet stay parallel as I walk, and by doing a few exercises to keep my ribs moving, my neck doesn't hurt at all! I can look over my shoulder easily while making a lane change. It's the little things.

So to recap:
-See a specialist for at least a couple sessions to learn to operate your body. Ours aren't normal.
-Don't be fat. If you are a ham, lose it. I was, I lost it, now pain free.
-Supplements help, so does drinking a lot of water
-Work out. EDS isn't an excuse to not work out, it's a reason TO work out.

Also, don't identify yourself as a diagnosis. So many people who have some chronic pain condition seem to draw an identity from it. Forget that. I know I have this, but I don't make it an excuse. If you just take good care of yourself, things get easier.

 

[flyhighk]

Great post junglejuice, as always.

Since you haven't been diagnosed by a professional, I strongly recommend you see one, and go from there.

 

[ABetterWay]

Thanks for your replies. I'm grateful.

I feel pretty shitty today and right now I don't really feel like talking more about it, as I'm doing my best not to focus on the pain and weakness, but rather to get done whatever I can manage to today.

I'll definitely give a better reply at some point. I just wanted to stop by and acknowledge your responses and say thank you

No money for doctors right now or else I'd be ALL OVER it lol. I'm thinking about going to the ER one day soon, though I seriously hesitate bc I know doctors hate patients who come in and say "I think I have a relatively rare condition..."

I know they deal woth hypocondriacs, and all sorts of shit....but in my case, the bizarre family health history and my symptoms STRONGLY support EDS, and I have learned that a cousin of mine who os from the side of my family where my health troubles cone from has been....drumroll.....dx'ed with a connective tissue disorder! So, I feel at the very least, I'm certainly on the right track.

My symptoms are becoming more severe and debilitating every year. I'm a very ambitious, strong, determined, intelligent, and (used to be) extremely active. For my health to kick my ASS this badly, there is definitely something SEVERELY wrong. Looking back, I see why I never felt normal. Because I wasn't! I have other dx's, some accurate. But I have a dx of Fibromyalgia...which I always questioned. It doesn't explain enough.

Rigjt now I'm trying simple, gentle movements to strengthen everything holding my joints together, within a small range of motion. All these years, doctors telling me to exercise ....and I have given my best efforts, in fact I'm fairly educated on proper form! I could never do it without severe injury, even simple things. Very frustrating. Now I understand my joints better, and see that I need things to gently strengthen my joints, and I'm gonna see if I can afford a gym membership for the pool.....for yeats I've been saying,"God, I need to get in the WATER!" Lol. But had no pool available /no money. I'm going to do whatever I can to get stronger. I am not willing to live like this. I'm listening to my body, after yeats of drs telling me to do things that only damaged me in the long run, who didn't believe mevwhen I said things like,"I pulled weeds for my mom for 20 minutes and could barely move from pain for weeks after."

Anyway, more another time.

Thanks again for the responses and advice. I hope you're both well today.

Peace.

 

[ABetterWay]

Just a quick note, in case anyone happens to be searching BL with "ehlers danlos" or "thoracic outlet syndrome" as key words...

I have diagnosed myself with Ehlers Danlos, and I definitely have Thoracic Outlet Syndrome as well (yes, once I can afford it, I will seek an official diagnosis. As I mentioned in a previous post here, when I voiced my suspicion to my Mother, she informed me that a cousin of mine has been dx with a connective tissue disorder ...so, I'm probably correct).

Anyway, I'm *just* beginning to feel a bit better, after a SEVERE '"flare-up" of symptoms, where just about every joint in my body was popped out of their sockets/position to varying degrees. From the research I've done, I can see why this happened to me at this time: a combination of hormonal influences (I'm female. At certain points in the menstrual cycle, the body releases a hormone called "relaxin", which leads to joints becoming looser; at another point in the menstrual cycle, another hormone with similar effect is released also), physical activity that was irritating to my joints (particularly to my arms/shoulders/elbows/wrists), and the weather (certain weather conditions impact my pain greatly; things like cold fronts, barometric pressure, etc).

So, my shoulders were very, very painful. My upper arms were extremely weak. My hands were not cooperating with me, and I was dropping things frequently bc I couldn't grasp objects well enough. I'm still having these issues, and that brings me to the point of this post:

I searched online for exercises I could do for Thoracic Outlet Syndrome, and found this:

http://www.summitmedicalgroup.com/library/adult_health/sma_thoracic_outlet_syndrome_exercises/

WOW! I just did these...and already my shoulders feel SO MUCH BETTER, and the weakness is reduced - I'm guessing because these particular movements helped to move everything into a closer-to-correct position, relieving the nerves and blood vessels from being crushed.

Anyway, just thought I'd post the page with the exercises in case anyone here does a search with EDS or TOS as keywords. Hopefully it'll be helpful to someone else.

After my period ended I began to feel well enough to begin joint-strengthening movements...very gentle, within a small range of motion. So far it seems to be helping. I'm very excited, as I have tried so many things and just ended up way worse off.

Now that I *understand* what's going on in my body, I've been successful thus far at implementing a routine that gently strengthens my lax joints, without injuring myself.

What a frustrating journey this has been, as I'm actually somewhat knowledgeable about modifying moves, proper form, etc...yet, invariably, even being very, very careful, I'd injure myself...sometimes severely so...from the most gentle, simple moves. It was very much frustrating, demoralizing, and made me feel like a weak failure. I was truly beyond exasperated.

Now that I understand that my joints aren't normal, my range of motion isn't normal, etc...I get why I failed, even when using such care.

Hope this helps someone. There was one I had trouble doing, the "arm slide", and I didn't yet try the last one listed, but just the others that I did do, have me feeling so much better already.

Be well!

Peace

 

[CFC]

I have EDS hypermobility type (formerly type 3). It's not too difficult to self diagnose with the Beighton criteria - score yourself out of 9. Google for the test. You may want to seek genetic testing in case you have one of the more serious variants (eg vascular type). There is - at present - no genetic test for the most common hypermobility type.

Assistive devices can be helpful (eg knee and elbow braces). Exercise is critical however - the more muscular you are, the less flexible you become (which is good for us), and the less joint laxity you experience. The muscle also takes strain away from the joints. And helps lessen the chronic fatigue-like symptoms you may often experience due to the greater effort a person with EDS has to exert to perform tasks and maintain basic posture.

 

[SixBuckets]

There's a massive and useful thread on Pain Management in the Other Drugs forum, FYI.

 

[Operia]

Ehlers-Danlos Syndrome

ABetterWay,
I have EDS, hypermobility type. I insisted on being seen by a geneticist. Geneticists generally focus on babies and children. You may have to go to a children's hospital.The diagnosis was a shock and a relief. It explained so many of my symptoms, but it also spelled out the prospect of livelong pain.

I am very lucky. I am in the homestretch of a coprehensive rehabilitation program for people with chronic pain.

In the rehabilitation program I have learned ways to recondition my body so that the pain causes less stress. My blood pressure got normal, my strength and mood improved by learning mindfulness and meditation. A trauma therapist started me on an app called Headspace. it is a 10-minute exercise

Yes, I also take an opiod. And I used to take anxiety and sleep meds. But thanks to meditation I got off of most drugs.
I am rethinking my whole life. Some things are too strenuous for me to do. Check out ednf.org. It may help you find a good doctor.

Best of luck, and don't feel shy to post more questions.
Operia

 

[Operia]

Ditto. Exercise is critical. I started swimming daily. It has helped a lot. The water helps by pushing joints in their proper places. The compression of the water feels good for muscle fatigue. I found that it is a safe way of strength training. I also noticed that it takes me much longer and more effort to build muscle because of the connective tissue issue.

 

[ABetterWay]

Thank you SO much for the helpful responses! I truly appreciate it

I just got a new job and am working a lot of hours, and it's extremely difficult physically. So I'm beat and I haven't been around much lately.

Hopefully I'll get a better chance to make a better response pretty soon.

For now, I just wanted to acknowledge your responses and say thank you very much

May you be well.

Peace.

 

[CFC]

^^ Glad to hear you're getting on and not letting the EDS get you down. Positive attitude is probably the other big thing along with exercise that will help you tremendously