Reddit Reddit reviews Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome

We found 9 Reddit comments about Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome. Here are the top ones, ranked by their Reddit score.

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9 Reddit comments about Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome:

u/BrutalHonestyBuffalo · 9 pointsr/ehlersdanlos

It took me awhile to go "AHA - THOSE ARE SUBLUXATIONS?!??!".

My elbow is my most obvious - when I go to grab something, or move too quickly, I will feel (and sometimes hear) a click or pop and then for a moment I am in excruciating pain - until it slides back into place.
But I also sublux my left hip pretty often - which is usually more of a flash of confusion, discomfort, and it stops my world (but not nearly as painful as my elbow).
I do have other locations that sublux (my left shoulder and my ribs...ugh, the ribs) - but they are less frequent. Also, lately I have been experiencing a lot of pain in my feet - which I have started to maybe think are subluxations.

I think you'll find in responses from others - that subluxs can range from super painful to almost none based on how often they occur and where. Generally if it feels like a click or pop, or the joint catches - it may be a sublux.

The medication that helped me most was Diclofenac (anti-inflam) and Gabapentin.
Gabapentin was okay, but Diclofenac CHANGED MY WORLD. It's behaves differently than other anti-inflams (though, I don't know the technical reason why).

Flare ups - frankly, I just do whatever I can to get through them. Sometimes they last a few days, sometimes a few weeks - but I just ended what I essentially believe to be a two year flare up - or rather, two years of sequential flare ups as different parts of my body affected each other and caused problems. However - this was because no one knew what was wrong with me and I was doing all the wrong things and getting the wrong treatment.

Now that I know what is going on - I am more capable of reducing the length of time by doing the right exercises (Muldowney Protocol) and avoiding activities that cause me to injure myself further.

How bad will this get? No one can answer that, unfortunately. But the best thing is that now you know what you are experiencing, you have the knowledge to avoid the things that hurt you as best you can.
For example, I cannot cross my legs or twist my body if I want my SI Joint to stay in place. I just can't.

Strengthening your muscles is the #1 way to improve your odds. I just described why the other day in another thread.

One of the big things we also need to learn to do is pace ourselves. Have you heard of the spoon theory?
Gotta learn how to prioritize those spoons. It can be a tough pill to swallow - I started this journey in October of last year (still waiting on my geneticist appt) with a clinical diagnosis, and I am still coming to terms with certain things I want to do, but shouldn't.

As for using a cane or stick - a lot of people do. If you think it will help you, it may. For me, sitting still generally causes me more issues that getting up and doing some slow, calculated moving.
You may also want to look into bracing for your bad days - work with your physio on this, they should be able to help you establish if any braces help. For me, a lot of my pain stems from my SI Joint upslipping. Almost all of my pain radiates from that point (it has causes S Curve Scoliosis, Lordosis, which has my neck out of wack - which then causes nerve issues down my right arm and down my left leg).

There are braces for the SI Joint - but again, the best policy is core strengthening.

Lots of people go on disability (in the US, not sure what it is called elsewhere) for EDS. From what I understand - it is a long hard road, but if you have good doctors and patience, you can make it happen.
I actually just received a handicap placard (for disabled parking) last month, though - thankfully - I only need it occasionally when things are at their worst.

As for advice - read these books (they can be expensive, but in the grand scheme, they are great):

Joint Hypermobility Handbook- A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome - This was written by the "EDS Guru" Dr. Tinkle. It is awesome and will help you through a lot of what you are experiencing.

And personally, I really like the Muldowney Protocol - this is a Physical Therapy regimen specifically for EDS patients. I have had a lot of success with it - as traditional PT actually injured me further.

Feel free to reach out to me to talk. It is scary at first - but there are ways to manage it. At first you feel very uncomfortable and anxious - and you actually spend some time "mourning" the life you wanted to lead. But eventually you find a new normal, have some small successes, and realize that you'll survive - just in a different manner you anticipated before EDS because a part of your life. :)

u/Lolor-arros · 6 pointsr/ehlersdanlos

Rest is the #1 thing that has helped me. Rest, and restful activities. I cook 1-3 meals a day and that causes most of my pain. If I can avoid it, I do, and it helps.

If I can spend most of my time reading, or watching movies or something, my pain gradually disappears.

I'm at my worst when I have to do things all day. Walking around causes knee and foot pain. Cooking and cleaning cause arm and hand pain. When I had to write in school, my hands would ache for days.

If she does a lot of housework, taking up some of that (or hiring a maid or something if you have $$$) would be a great gift. The only real way to avoid injury is to not get hurt in the first place, and if her arms and hands are hurting the most, it's probably caused directly by what she does from day to day.

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If her fingers get bent back or dislocated often, silver ring splints are very highly regarded. They prevent your fingers from getting bent back at all - hyperextension can cause a lot of damage over time.

You do have to get measured by a doctor, so that appointment would be the gift. It would probably be better not as a surprise, unless you know her fingers flexing are a big problem. They can sometimes be covered by insurance as they are custom orthotics, but you usually have to fight for it. I'm sure their "Contact Us" folks can help her get approved if you call, they only get paid if she does ;)

If her fingers aren't so much of a problem, an appointment with a really good orthopedist who's familiar with EDS would net her some awesome wrist, elbow, and/or shoulder braces. Cheap braces suck, they don't usually help. Good ones can be very expensive, but they really help. Insurance can help again here, but this also usually takes special approval.

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Because she's new to the diagnosis, books about EDS could be a good small gift. Books like this one have taught me a lot about managing symptoms and getting through life comfortably.

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And this probably wouldn't be appropriate, haha - but medical marijuana is right behind rest in terms of helping me get through the day every day. Constant pain has some really negative effects on your brain.

I used to take anti-inflammatories daily, and opioids when it was really bad, but both of those had terrible side effects.

Get her an ounce, dawg, #420blazeit (/s)

u/adhocqueery · 4 pointsr/ChronicPain

The neat thing about knowing you have EDS as a young person is that you have the knowledge and opportunity to start protecting and taking extra good care of your body now. Preventing injuries and protecting your joints may go a long way towards preventing pain later.

Do you have a doctor to offer you any guidance? In either case, you might check out The Joint Hypermobility Handbook, a handy guide by one of the big EDS experts that covers basically everything you need to know, in a format that works for both doctors and patients. As someone else mentioned, /r/ehlersdanlos is a great resource, as is Ehlers Danlos Athletes on FB. Outside of those groups, reading about EDS online can get scary fast, so do know that there are plenty of people living well with EDS - they're just not the ones who tend to dominate the forums.

The best advice I've gotten for managing my EDS-III is to stay in shape. And don't wait to see someone about problem joints! Deconditioning can happen pretty quickly, so finding ways to exercise despite any random injury has been super important. A sprained knee can make it hard to exercise, but not exercising quickly leads to other injuries as I get weaker, and then things get scary fast and it is long, hard fight to get back to "normal." The real key for me has been finding a form of exercise that I enjoy, and then finding a PT that will help me with remedial exercises, adaptations, taping, bracing, etc. to better support my body in those activities. If you don't have pain, PT may not be necessary, but you might also consider going in for an evaluation to alleviate your concerns and get ahead of any particularly unstable or cranky joints; they could also help you set up an exercise plan if you don't already have one.

My PT is also big on "joint protection," which seems to be a think that pops up on a lot of arthritis sites, but it also seems like solid advice for any body. Try Googling it or here's a short guide that seems to sum it up pretty well.

tl;dr: stay strong, enjoy life, and hopefully you'll continue to feel pretty OK. :)

u/mycroftar · 3 pointsr/ehlersdanlos

Don't be worried, be glad that you're finding out so early!

I had to figure it out for myself when I was 17. No doctor had even suggested it as a possibility. But I found the diagnosis, and doctors confirmed it. Life got a lot easier after that - having a diagnosis is fantastic.

A diagnosis is not a bad thing. It's a good thing. Nothing is different from the way it was before - the only difference is that y'all are aware of the problem now, and can take steps to make his life easier and more comfortable.

If you (or someone else close to your son) learn as much as you can, and help your son get adequate treatment, he'll be fine.

Also, this is a great book, if you can get a copy. Basically 'Ehlers-Danlos, Hypermobility, for Dummies' :) It covers almost every aspect of hypermobile EDS, how it relates to daily life, how your son can take care of himself, and how doctors can help.

u/sugarhoneybadger · 3 pointsr/ChronicPain

Did the ophthalmologist discuss with you the criteria for diagnosing joint hypermobility syndrome or EDS-III? Extreme myopia is actually associated with it. It sounds like people have tossed around hypermobility as possibly being related but nobody is really looking at it seriously. Is that the gist of it?

I would start reading everything you can about JHS and start implementing self-care measures, since you know you have this issue. From your past post, I think you could probably be diagnosed with it if you saw someone who was familiar with hypermobility as a pain disorder. Treating yourself as if you have it should not make things worse if the problem is actually rheumatoid arthritis.

Some resources I have found helpful:

[The Pocinki Paper] (http://www.dynakids.org/Documents/hypermobility.pdf)

The Hypermobility Handbook

These are the only two resources I can really suggest because there is so much conflicting information out there on JHS, I only feel comfortable linking to stuff written by actual physicians. But there are a lot of blogs and so forth that have stretches and pain relief techniques you can try.

u/NullZebra · 2 pointsr/ehlersdanlos

Yeah, the fatigue sucks :( ... The "Joint Hypermobility Handbook" (a great reference for EDS symptoms and management suggestions) states that certain medications can combat fatigue and lack of focus. Common ADHD medications like Vyvanse can help. You should talk with your primary care doc.

u/shorthairtotallycare · 1 pointr/ehlersdanlos

No problem. Shame you can't get physio, that's made the biggest difference for me :( to the point that I pay out of pocket and forgo other things so I can do it... might be worth going for a couple of sessions even just to get evaluated and provided with exercises you could do at home, I've done that a few times when it wasn't in the budget to go regularly.

Failing that, if you have definite diagnoses for particular MSK injuries, it's sometimes possible to find rehab protocols online. (Search phrases would be like, for e.g. "MCL rehab protocol") - that should take you to some patient handouts from insurance companies and hospitals, or the AAOS (see the "education" section) - may be helpful. Though not EDS specific, of course :/

I believe there are also a few books people have recommended on here, about self-care & exercises to help. I've seen the Muldowney Protocol referred to often, and this one too, I believe (can't personally vouch for either).

Good luck!