Best products from r/ehlersdanlos

My current lineup:
Morning dose of Vitamins C & D, MSM, BCAAs (branched chain amino acids, I think?), L-Lysine, L-Serine, and electrolyte drops - also 24hr zyrtec (I get hives pretty easy); recently started CoQ10 as my heart is doing flippy things on a regular basis. (I have everything but the CoQ10 & Zyrtec in powder form, so I do it all in one glass in the morning with an Emergen-C packet - though it's pretty easy to DIY if you get Vit C powder and mix it with raspberry/lemon/whatever fruity powders are out there, I don't remember the ratio off the top of my head, but there are a number of sites with the info and powder suggestions; I'll be doing that after I kill this box. This may affect the absorption of some of it, but I eat a healthy diet and pretty much take this stuff for extra bonus doses, not like my body depends on every gram. I've also been too lazy to do the research on what should be taken when/with what other stuff, like the fish oil mentioned by someone else)

CBD for pain relief (lotion/oils, recently tried a local infused honey, but the first topical applications are definitely awesome for more immediate relief due to the arnica and mints as well; haven't noticed if the honey is super beneficial or not, but it tastes awesome). If you're against the CBD stuff, there's stuff out there with just the arnica/mints in it - give that a shot. It's no miracle, but it'll take the edge off most days.

At night I just do another dose of electrolytes (I split the daily dose in half, more or less. Sometimes I'll do a few more drops in the middle of the day if I'm doing something a bit more intensive than my usual day).

Depending on your mouth pain (sores/bumps/tissue damage/inflammation?) the Lysine might be a good bet - it's an amino acid that's pretty key in repairing/maintaining mouth tissue - and your body doesn't make it.
MSM isn't a miracle for pain relief for me, but I do feel looser when I skip my doses for sure. (Man, what's wrong with me these last few days? Oh. I forgot my MSM.)
Apparently Vit C is pretty crucial for bone/collagen formation.

Absolutely none of this is done with a doctor's orders or knowledge (yay not being insured for 6 years, still waiting on finding my new PCP now that I am) so consult yours if you've got one and all.

Also, massage therapy has helped me tons. If you can combo that with a chiropractor, I highly recommend giving them a shot - I'll file that under "supplements" :D
On that note, I also had pretty bad gum problems until I got a Sonicare and started flossing regularly/using a GUM thingy (which is pretty uncomfortable some days, but I still try to) - not suggesting you don't or anything, just my experience. Plus the Sonicare took a lot of the effort from my hands/wrists/shoulders from conventional tooth brushing, resulting in less pain.

I'm also gluten, soy, dairy and egg-free as far as diet goes - tested positive for allergies to the proteins/sugars and I try to stay pretty strict with it. Tummy trouble on top of joint trouble is no fun, plus I've read that gluten and dairy can be rather inflammatory.

Sorry you're having a rough day. Many hugs, if you'd like them <3

Edited to say, DEFINITELY Epsom Salt baths if you can do the bath thing. If not, you can salt a wet hand towel, roll it up and use it like a compress on whatever body part you'd like to target.

I was diagnosed recently, as well, and still deal with a lot of the mental side though I've been pretty proactive at taking control of the situation. While others here have made some great points at dealing with the mental side, here are some additional things that have helped me -

Edward Muldowney's Exercise Program: Mr. Muldowney is based in Rhode Island and is considered a knowledgeable EDS clinician and researcher. This book is very extensive and lays out several months of an exercise program geared specificially for those with issues stemming from EDS. I was fortunate to find a physical therapy clinic that recently began treating EDS patients but I brought them this book and they were hugely grateful for the additional information. Half of the book is written for the PTs to understand the exercises and how to guide someone with EDS through the program. If your clinic doesn't feel they need to see this book, find a new clinic that's willing to learn.

Ehlers Danlos overview: This is a pretty well-circulated (around here, anyway) document written by an EDS doctor that aims to explain EDS in a way that's helpful for patients and those around them to better understand what they're going through. I shared this with my mother and a few others and I've heard that it helped them understand a lot more what I'm dealing with because it was just too broad and unwieldy to try and explain on my own. Even more, it was eye-opening for me because I began to realize issues I've had my whole life (that never seemed relevant) may have been interconnected with EDS itself.

Pain Management: I just found this the past weekend and thought it was also a great resource. It's meant to be a companion to an hour long lecture but the slides are still helpful and cover specific regions of the body, how pain originates, and how it may be treated. This is a great resource moreso for you than your family and friends but might be helpful for them once they understand the condition better, too.

I hope this helps you as it did for me. I know it can feel isolating and even depressing when you realize you can't do certain things anymore or that others may not understand. Even more when those that don't understand are doctors or medical professionals. But remember that there is an entire medical community out there that is trying to understand and treat this condition and they want to meet with you as badly as you want to meet with them. Find support groups, find referrals, do a lot of Googling and remember to be proactive. You have more control over this than it feels like sometimes and there are people that want to help, even if you don't know them yet.

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.

- kinesio tape

-biofreeze balm

- my NOVA brand cane. They come in a ton of fun colors. I have the proud peacock one, but there are many styles to choose from. My favorite cane. https://smile.amazon.com/NOVA-Designer-Offset-Handle-Flowers/dp/B00SWX4BHU/ref=sr_1_1_sspa?ie=UTF8&qid=1537596395&sr=8-1-spons&keywords=nova%2Bcane&th=1

I am a big believer in having equipment that is cute or cool or pretty looking so it matches your personality and you enjoy using it.

- Crazy Compression makes compression socks in fun prints. Also, they are the most comfortable compression socks I own.

- a memory foam mattress topper for my bed makes it at least a little more comfortable to sleep, though I still have a lot of trouble finding a way to sleep that doesn't hurt.

- a kitty litter scoop with an extendable handle so I can scoop the litter box without having to crouch! Total game changer.

- one of those grabber tools so I can pick up things like laundry without bending. should have bought one ages ago. It is making it a lot easier to pick up my room.

A lot of my problems lie in my SI joints too. I've been putting off having my SI joints fused because I don't want to go under the knife, but my pain management doctor likes to bring it up every other visit. Having to adjust them multiple times a day does get to be pretty tedious, though.

I use this SI joint belt: https://www.amazon.com/gp/product/B00169Z7AW/
It works pretty well, but it always needs to be re-adjusted whenever I stand up from sitting. But I think that's normal for any belt you'd have to wear. Fortunately it is comfortable and does seem to help prevent my pelvis from wrecking itself.

Anti-spasm meds help a lot, and slapping on a salonpas makes the pain better too. I also notice that there are different types of SI pops for me. Some are small that only give me temporary relief, and others are the big massive pops that bring me significant relief (and freak out my husband). The interlocking your ankles and pulling your legs apart move I do a lot throughout the day when I'm working at my desk. But once I'm in bed, I lay on my side, and then do something similar to this (sans the door frame). That usually gives me the good pop I need to get me through the night.

All that being said, I have noticed my pain and SI joint problems are worse when I'm more sedentary. They improve when I start walking more. Core training and PT has never really been able to fix things for me better than simple walks in the park a few times a week.

Good luck.

I only use braces when something is injured or I'm doing something I know will be particularly strenuous (would cause dislocations) gardening or cleaning the house comes to mind. I have just about every brace for every body part there is I think. Kinesiology tape is awesome but unfortunately causes blisters on me, not so awesome. What you really must do and keep doing is strengthen (very carefully) your joints and core. Mat based Pilates is the best way to do this that I have found. It's the only thing that helps my hips and it helps a lot. I really like this dvd:

https://www.amazon.com/Element-Pilates-Weight-Loss-Beginners/dp/B001AYWY6I/ref=sr_1_1?ie=UTF8&qid=1484954798&sr=8-1&keywords=pilates+dvd

Go slow, push yourself but don't hurt yourself, and work your way up till you can do the full dvd. It took me a month. If you aren't ready or able to do this level of exercise there's a PT book for EDS:

https://www.amazon.com/Living-Life-Fullest-Ehlers-Danlos-Syndrome/dp/1478758880/ref=sr_1_1?ie=UTF8&qid=1484954890&sr=8-1&keywords=ehlers+danlos+syndrome+physical+therapy+book

It's $50 but if you are so loose and unstable that you need to start here you should definitely invest in it. Ideally, it should be done with a PT but is explanatory enough to do it on your own.

edit to add: of all the braces I have I use the cheapo pull on ones from the drug store the most. They're the most comfortable.

I have problems with my hips as well, and what helps most is an SI belt like this. This is the brand I have, but I'm sure there are other kinds available around the world. https://www.amazon.com/dp/B000R3KN9S/ref=cm_sw_r_cp_apa_Dx.RzbF3B85KS

A knee brace would probably also be helpful. It probably doesn't need to be anything big and bulky. For me, a simple Patellar Tendon strap like this helps. https://www.amazon.com/dp/B000F5R4R2/ref=cm_sw_r_cp_apa_Ol.RzbJ40Z9SP

I know you probably won't be able to find these exact products, but hopefully it gives you an idea of what to look for.

Beyond bracing, physical therapy is usually the biggest help. Strengthening the muscles helps them be able to hold the joints in place and compensate for loose joints / ligaments. These are usually going to be different exercises than the kinds of things you would be doing while lifting weights at the gym. For me, many of the exercises I do involve lying on a mat and using an exercise ball (for things related to my hips) or using exercise bands (for my shoulders). I've heard that exercising in the water is also good because it's easier on the joints, but I haven't tried that.

Muldowney Protocol. - it is worth EVERY PENNY.

I cannot say enough good things about this - it's a PT regimen for those with EDS.

It starts off really chill - like "MAN, THIS IS SO EASY, I CAN DO THIS FOREVER!"

Then as you work your way up in the system, you are like "yeah, okay, not so much" and it becomes a challenge - a good, easy, safe challenge for those of us with shitty joints.

It gave me a TON of mobility back.

Alternatively (when I am not 9 months pregnant and miserable) - I walk, ride a stationary recumbent bike, and swim (though, not as much as I would like to).

Swimming is good in theory - if you are fit. I have had issues with dislocation because it is easy for me to move too much.

Medically speaking, nothing works for everyone, especially those with EDS. That said, chiropractic care can benefit a large portion of the population, and I believe it is worth a shot to determine if it works for you.

Research, research, research!
Having EDS means that chiropractors (abbreviation DC, for Doctor of Chiropractic) do need to understand how our bodies function. This means calling local clinics, major health groups, and asking for others' opinions. I work in a large city with many, many chiropractors, but I would only trust a handful of them to treat myself or other EDS patients.

A good amount of my discomfort is due to too much of my musculature tensing too often, compensating for my loose ligaments. This muscular support worsens when those muscles holding us together begin to pull us apart. For example, tension across my upper back and shoulders (common area for anyone to hold tension) frequently pulls several of my ribs out of place. In order to alleviate this weird, foreign, and aggravating sensation (personally my dislocated ribs feel more weird than painful), I must first loosen the musculature with a massage or using a BackBuddy. I can skip this and go straight to an adjustment, but I tend to move easier with somewhat reduced tension. The chiropractor then helps me reset these ribs. It is important to strengthen those muscles and safely stretch them as well, in order to reduce the chronic, involuntary tension (I practice PT exercises and light yoga)

Adjusting my ribs is only one of the many fantastic adjustments my chiropractor makes, and I highly recommend at least giving it a shot. Even just scheduling a consultation with a doctor can give you some insight on whether or not the practitioner might understand EDS.

If you feel unsafe or uncomfortable thinking about a chiropractic adjustment, it may not be the route for you.

hi,perhaps you might want to pay attention to your diet. These items will help to boost your energy levels:

• Almonds, nuts and other seeds
  
• Kale, Spinach and Leafy Greens
  
• Fruits like bananas
  
• Oatmeal and whole grains
  
• Eggs and Salmon
  
• Yogurt and fermented foods
  
• Humus and Beans
  
• Coffee, green teas
  
• Dark chocolate
  
  You can boost your diet on these items I mentioned and you will definitely see changes. If you still feel the fatigue I would suggest you try taking Vitality by Eu Natural. It contains Ashwagandha, Zinc, Holy Basil and other natural vitamins and mineral extracts. You can find it here https://www.amazon.com/Vitality-Adrenal-Support-Fatigue-Fighter/dp/B07CSDXBGD
  
  ​
  
  One final piece of advise I can give you is to exercise regularly as much as you can. Even if that means light exercises or taking the stairs instead of the escalator, walking instead of taking transportation. In short staying active and do not forget stay hydrated! Drink water, natural fruit juices!
  
  I hope I have been able to help

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.

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.

I had several awful experiences with physical therapists before I found one I liked. The right therapist can make a huge difference. A lot of PT for EDSers is strengthening muscles to help keep the joints in place (the ligaments and things can't do it so the muscles have to) and learning what a normal range of motion looks/feels like (if you've always hyperextended everything it can be hard to figure out on your own what's a normal range and what's hyperextension).

I've been working with my physical therapist with Kevin Muldowney's book Living Life to the Fullest with Ehlers-Danlos Syndrome. It starts out super basic (like learning to lie on your back with your spine in a neutral position) to give you a good foundation and then builds up to harder stuff. It's not a very exciting program but it's really helped make my joints more stable. My therapist tries to make it more entertaining by playing music, asking me silly trivia questions, and sometimes doing the exercises with me for moral support.

Absolutely! I bought mine at an Ulta Store. I had not seen the new style of air dryer in person or known anyone personally that had used one yet, Otherwise I would have ordered mine from Amazon!

https://www.amazon.com/dp/B01LSUQSB0/ref=cm_sw_r_cp_awdb_t1_qgG4Cb4FT51ZY

There was the other brand I wanted to look at too by BabyBliss. The main difference in the two (other than $10-15), was the BabyBliss version had a self-turning button, clockwise & counterclockwise. I was thinking anything more to help, right?!
The reviews were mixed, with the largest complaint being the brush stopped turning. Second complaint was that strands of hair would get twisted into it causing them to be pulled from your head.

All in all, I’m beyond thrilled that I was only able to purchase the Revlon brand at the store!
Best of luck, hope it helps you!
Cheers

I got the plate and strap separately, both from Amazon. The plate is this stainless steel one, and the watch strap is this 18mm one. The company that makes the plate sells a version that includes a band, but it’s a cheap silicone band that I felt was too fragile, so I opted to buy the plate by itself and get a strap separately. You’d never know they weren’t designed to go together though. The fit is almost uncannily perfect. Just make sure the watch strap you get is 18mm, and you should be good to go!

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.

-

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)

I'm late to the party, but I swear by colace.

https://smile.amazon.com/Wellness-Basics-Softener-Docusate-Two-Tone/dp/B077Y6VTW6

That right there gets me going, 2 pills a day and I don't need anything else. It's safe to take long term, but ask your doctor if you have concerns.


Also, don't sub tramadol for just motrin or advil. Combine advil with tylenol. They have a synergistic effect - they work better together than they do by themselves. 4 advils + 2 tylenols feels like 50mg tramadol to me. That might be enough to give your intestines a bit of a break.

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'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

I just got some and they're really nice. This is the pair I have: https://www.amazon.com/Vive-Arthritis-Gloves-Compression-Osteoarthritis/dp/B072J8W8L9/ref=sr_1_14?crid=3UWHHJ4NYKB1B&keywords=compression%2Bgloves%2Bfor%2Barthritis&qid=1552862819&s=gateway&sprefix=compression%2Bgloves%2Caps%2C162&sr=8-14&th=1

They're fairly low-profile but they work super well.

have you tried a TENS device? You attach the electrode pads around the problem area, then cover it up with a heating pad (if you have one that does wet heat, instead of dry, that apparently works better). The device stimulates the muscles in the area, increasing blood flow, and massively helping with inflamation. It feels like very mild tingles. M- was never able to use it, because his skin was too delicate, but if you don't have issues with KT tape, you won't have issues with this.

Amazon link to a unit that's ~$40 (you can get them for cheaper and also more expensive versions. I'd recommend you do some research, since I've never bought one. I just know a couple other EDS folks who freaking LOVE the things. I'm just including this link as an example of the device): https://www.amazon.com/Muscle-Stimulator-Channels-Machine-Rechargeable/dp/B07GFJT4LL/ref=sr_1_2_s_it?s=hpc&ie=UTF8&qid=1549992662&sr=1-2-spons&keywords=tens+unit&psc=1

I have them in the same spots, although not as stubborn as yours. You may already have tried this, but having one of these on hand at home has helped a lot for mine: https://www.amazon.com/Body-Back-Original-Trigger-Therapy/dp/B0006VJ6TO/ref=pd_lpo_vtph_121_bs_t_1?_encoding=UTF8&refRID=DCCZWWST6X2P8FM4Z4TG&th=1

I know you've tried a lot of more invasive things, but it may be helpful to have a massage tool that you can use on your own on a more regular basis than you would be able to get injections, dry needling, or massages.

My only other thought is maybe TENS? Not sure how well it works for trigger points, but might be worth a try?

I wonder how these would help? I bought these since the taping always felt weird since I am a little knocked knee. https://www.amazon.com/Thickened-Adjustable-Basketball-Volleyball-Tendonitis/dp/B01MYGDB2L/ref=sr_1_5_s_it?s=hpc&ie=UTF8&qid=1519512308&sr=1-5&keywords=knee+support

Glad you found something that helps. Does it help against kneecap dislocation? (I've had too many to count)

Cool, thank you. That ace brace looks tempting. I already have these and they do a decent job, but sometimes I feel like I need more. (Like right now my patellas are moving/grinding an awful lot due to all my physical activity.)

​

That link you provided talked only about wearing braces when doing sports. I don't do sports but I feel like they are useful when cleaning the house or going out to places where I will be walking a lot (so, not out to dinner, but out to a shop or a park / nature area).

​

When do you use yours?

This book by Dr. Tinkle is a great resource:

http://www.amazon.com/Hypermobility-Handbook-Management-Ehlers-Danlos-Syndrome/dp/098257715X#

This is a good intro to MCAD: http://www.reddit.com/r/ehlersdanlos/comments/1uivbp/presentation_diagnosis_and_management_of_mast/


Some general resources: http://www.reddit.com/r/ehlersdanlos/comments/1ently/eds_resources/

POTS: http://www.reddit.com/r/ehlersdanlos/comments/1ug4mr/the_postural_tachycardia_syndrome_pots/

Another EDS guide: http://www.reddit.com/r/ehlersdanlos/comments/1n5kff/new_comprehensive_guide_about_eds/

Need for magnesium: http://www.reddit.com/r/ehlersdanlos/comments/1psq99/magnesium_and_ehlersdanlos_syndrome_why_persons/

Also don't ever be afraid to take a paper with you to the doctors office. Many of us bring the Pocinki paper when seeing a new doctor.

I have this one and love it!

I've been using the Mio Electrolytes water enhancer or theConcentrace Trace Minerals Drops.

Also drinking water that has minerals can help as well, such as SmartWater.

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.

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

Have you got the EDS-H book from Dr Tinkle?
http://www.amazon.com/Hypermobility-Handbook-Management-Ehlers-Danlos-Syndrome/dp/098257715X

Edit: https://www.youtube.com/channel/UC652wu-mvi2ghwQN-is7LIQ/videos
These videos are insightful too :)

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!

>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