Reddit reviews Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS

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. :)

You're so welcome. I'm sorry to hear you've had a similar experience. It is extremely frustrating to be hurting and not getting the help and pain relief you deserve. I totally understand the hypochondriac thing. That was my life for a long time before I got lucky with a few of my doctors and I hope the same happens for you.

My parents thought I was depressed for a really long time before I got my diagnose because I simply just couldn't do things. Don't give up though. I know how insanely expensive it can be.

I don't know if its something you're already doing but going to a chiropractor has helped me with correcting all the little subluxations I get. A word of warning though, you should definitely get someone who is familiar with EDS or at least tell them that you want manual correction only. My insurance covers it but I'm not if yours does. The only other thing that is affordable that I can think of is working through a PT program at home to help stabilize your joints by strengthening your muscles. It's not cheap up front but much cheaper than ongoing physical therapy. This is the book that I reference. https://smile.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880

I hope things start to look up for you. Hang in there.

I would recommend seeing a physiotherapist who is knowledgeable about hypermobility. They'll be able to advise you on any bracing and exercises you'll need based on your daily life, and specific issues. They'll also be able to tell if other parts of your body are involved in causing the pain and instability (often issues with the lower back and hips excerbates ankle and foot pain).

Be sure to let them know that you are wanting to build up your long-term strength and stability, or they may simply release spasms in your muscles that are actually spasming in order to protect your joints. Be prepared for it to take a year or so for your muscles to be strong enough to protect your joints without spasming.

You may want to take a look at this book. While it's written specifically for people with EDS, it's helpful for any of us on the hypermobility spectrum.

I have yet to find a PT in my area that knows anything about EDS. My current PT seems willing to learn, though. I've brought her lots of papers about EDS and she seems to have read them. She also doesn't try to push me into doing anything I'm not comfortable with. I brought her the Muldowney book on PT for EDSers and we've been working on that. So far so good.

My previous PTs didn't work out because they wouldn't learn anything about EDS and kept having me do things that hurt me. They liked to pick one joint or area they wanted me to strengthen and tried to ignore that all the other joints are unstable...like making me to planks for core strength but ignoring that my shoulders sublux when I put that much weight on them. And telling me to keep doing the exercises even when I told them it hurt and things were slipping out of place.

This book is great and has a lot of things meant to be done in conjunction with working with a physical therapist. It's expensive, but that's because it's basically the size of a textbook

Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS https://www.amazon.com/dp/1478758880/ref=cm_sw_r_cp_apa_J0hzzb9CXNH8H

What state are you located in? You can get in touch with an EDS support group that can help you find an EDS doctor in your area.
http://ednf.org/support-groups

They also have an online Message Board support group that is very helpful:
http://ednf.org/message-boards

In the short term things you can do now. Go to a drug store and get braces for everything that hurts (wrists, ankles, knees, back), Epsom salt for warm baths, magnesium, B vitamins, Zyrtec and Zantac - take every day. For your shoulder (if you don't have skin reactions to surgical tape) use Kinesiology Gentle tape, you can look up info or buy a book to show you how to tape it. Make sure you sleep with a pillow to prop up the shoulder if you sleep on your side so it doesn't fold in. Also Bio-freeze pain gel from Amazon works really well.

As for exercise:

Physical Therapy Book
Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS http://www.amazon.com/gp/product/1478758880?keywords=EDS%20physical%20therapy&qid=1457540631&ref_=sr_1_1&sr=8-1

Both of these DVD's are mat based so your body is supported. The first DVD is all mat based. The second, some are standing and a few are bending over the rest are mat based. I put the book and DVD's in order of strength required. The book is a bit pricey $45.00 but considering the cost of non helpful PT it's cheap! The DVD's are around $7.

Element Targeted Toning Pilates for Beginners http://www.amazon.com/Elem-Targeted-Toning-Pil-Beg/dp/B00E8A0OZ4/ref=sr_1_1?ie=UTF8&qid=1457540779&sr=8-1&keywords=pilates+element

Element: Pilates Weight Loss for Beginners http://www.amazon.com/Element-Pilates-Weight-Loss-Beginners/dp/B001AYWY6I/ref=sr_1_6?ie=UTF8&qid=1457540779&sr=8-6&keywords=pilates+element

As for stomach issues most EDS specialist tell you not to eat gluten or dairy. For times when I'm having a lot of problems I use the Wahls Protocol diet, you can find it on Amazon too.

Are you having neck and/or headache problems?

I have hEDS, and I don't have the dislocations. I feel things moving around and they stay out of place, but I wouldn't say dislocated.

It's possible you could have the hypermobile type and still not dislocate ( I would assume because that's how I am). I recommend purchasing the book, "Living Life to the Fullest with EDS" and reading on the different types.


https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880

I've been working through the Muldowney Protocol for some time now, though I keep having to restart after setbacks. It's designed to build your muscle groups from the smaller and essential muscles in the lower back, to legs, then upper body and beyond.

I think this has been super effective as I stopped seeing a physical therapist in 2017 and can still maintain strength with these exercises. For me, it means less severe pain from day-to-day, more capabilities like walking and hiking (though with more conscious resting and measuring out my efforts), and gives me that sense that I can still do physical things which is a great boost for my mental state.

I used to be really outdoorsy (hiking, camping, kayaking, rock climbing, ect) but over the years I slowly lost the ability to do that stuff and had to give it up completely. For a long time I forced my body to do what I wanted it to do out of spite and stubbornness and I ended up doing a lot of damage and made it much harder on myself in the long run. It’s been a long, difficult process but I’m learning to let go of the life I had and the life I expected to have. What I did was I figured out the aspects/benefits of my old hobbies that I needed and I substituted them with EDS friendly versions. It takes a lot of introspection and effort but it’s worth it and your future self will thank you! So, here’s what I do:

1. To keep myself fit and build my strength back I have a PT routine that I do every day. I’ve been following the Muldowney Protocol for the last 3 months and I highly recommend it. It’s similar to the program my EDS literate PT developed for me (and I’ve been able to teach myself basic anatomy and medical lingo) so I’ve been able to successfully follow the book by myself, but if you have the option I’d recommend finding a good PT to work with since they’ll be able to point out and correct unhealthy joint movements.
   
   
2. For that feeling of accomplishment and pride in myself for overcoming obstacles I’ve turned to more artistic hobbies. I’ve poured all of that energy into origami, painting and wire sculpture with the help of finger splints and wrist braces as needed. It may be difficult for me to go to the grocery store by myself but I can create a realistic rose out of a square of paper and frankly that’s so much more impressive than grocery shopping! It is so, so, SO important to be able to have at least one thing that EDS can’t take away from you. I really encourage anyone dealing with a disabling condition to find something like that, we all have our pride and it’s so depressing and discouraging to slowly lose the ability to do normal adult stuff. Instead, I take pride in my ability to do things that others can’t do. (Well, anyone can do it if they put in the work to learn and practice, but ykwim!)
   
   
3. For the adrenaline rush I’m learning how to ride a scooter. I grew up around motorcycles and my husband has several but they’re too rough on my joints to even ride on the back, let alone drive them. With my little Kymco scooter, however, I can sit comfortably and it’s lightweight and easy on my wrists so I can safely zoom around without hurting myself. So. Much. Fun! I’m taking it slow since I’m so fragile (lol) but I’m really looking forward to driving it around town. It makes me feel alive again, like I did when I was able to kayak and climb rock cliffs.
   
   So anyways, this is what has helped me and I hope it can help you or anyone else reading.

I'm getting this one https://www.amazon.co.uk/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880 but it might not be the only or best one. I heard about the muldowny protocol on reddit, where another person recommended it.

We'll see how well it works

>back injuries are not common with HEDS

Disagree. The Muldowney PT book that we all love is written entirely around the idea that SI joint problems are so insanely common with people who have EDS, and that joint is in your lower back. Chapter 1 starts with working on that joint. The entire book is written around the idea of making that problematic joint stronger.

Please buy this book. Back pain sucks.
https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880

They say that a good physical therapist who understands biomechanics is essential to help stay ahead of EDS. It's quite possibly the difference between keeping a fair amount of everyday functionality, or ending up with assistance from crutches or a wheelchair. I think you have to scrutinize who you see. Our bodies are delicate, so you don't want anyone asking you to push you past your physical limits. It's helpful if he/she is a bit humble and willing to learn about EDS first.
There is a PT center in Rhode Island that came to specialize in helping EDS patients. He was getting calls from all over the U.S. with questions. After some friendly pressure from a patient, he agreed to write a book. [Kevin Muldowney's book: Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS] (https://www.amazon.com/dp/1478758880/ref=cm_sw_r_cp_api_8MixxbR3PSFN0) is a good resource that patients can bring to their PT to help them plan a light exercise regimen.