Ehlers Danlos and Tendonitis, shedding some light on the situation

by Heidi
(Ohio)

I am a 37 year old mother of 2 who has Ehlers Danlos which is a connective tissue disorder. From what I understand, I have faulty collagin which makes me super stretchy and doesnt hold me together correctly. My muscles have to work extra hard just to hold me in a somewhat normal position because my joints allow me to go way farther then they should. Everything goes too far.

Chiropractors are somewhat affraid to mess with me anymore which I found really wasnt good for me anyways...except for serious dislocations.

I have had arm dislocations as a really young child, broken wrist and elbow and as a youth, knee cap sliding to the side catching me off guard and bringing me flat on my bottom often, and alot of back pain starting in my early 20's.

Now, as a 37 yr old I am experiencing all sorts of disomforts. This week's new issue is my shoulder. I believe it started from me laying on it wrong while I slept. I had it folded above and under my pillow...perhaps too far. It burns, has marbled pain, and does not go as far as normal and when I try it hurts like crazy. The pain keeps me awake.

I assume this is tendonitis. An orthopedic (who really doesnt know what to do with me) says I will get tendonitis often with my problem in many areas of my body. He is right as I get similar pains to this in my wrists and feet etc.

I just finished physical therapy and phonoporesis on my hip for what he said was thought to be ITB of the hip....also bursitis. The PT showed me particular stretches they would normally give someone with this problem but tells me she doesnt know if that is good for me because I'm already stretchy?

The phonoporesis helped but not completely and it is coming back since I am not having it done any longer. I just wish I could go for walks again.

You need to walk to do everything. I am fine for a minute but after that my hip tightens up and by the time I take a 15 minute walk or just go up several stair steps, I am limping and it is burning, clicking and pinching etc.

I am just wondering what can I do for this all?

I try to strengthen by doing simple things like the teeny Wii fit stepper but that hurts shortly after begining. I need to loose a little weight but find everything I do causes a new issue (primarily catches and my ribs getting in bad positions poking and making it hard to breathe.)

To stretch or not to stretch? I am confused with what is good or bad for it since I am different then most people. If I am super stretchy, is it good for me to stretch more to keep from getting things like this or will stretching just make my stretchyness worse and worse? I have problems with my neck and my back is literally a mess. I know that my future doesnt look so hot and it is depressing.

I just cannot find anyone that will look at my issue as a whole and will help me. According to them I need to see a different Dr for each individual part of me that hurts, and even then....they shy away because they are unsure of the whole situation. I'm hoping you

can shed some light on what might be good for me since you know so much about something that effects my whole problem. Tendons, Ligaments, Muscles.

I have asked till I'm blue in the face at Physical therapy and the situation just confuses them. They are not sure if heat or ice, or stretching or not is good for me. Any suggestions is GREATLY appreciated.

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Joshua Answers:

Hi Heidi.

Thanks for sharing and asking. As you say, with Ehlers Danlos Syndrome your future doesn't look so hot. From what you say, I'm inclined to agree with you.

Having said that, there is a lot you can do to HELP your body work with less pain and . I don't think there's a fix, or a remedy to reverse your hypermobility. That means we have to work with the body intelligently to do everything that we can do to help you to not only function well/optimally, but to counteract the continual damage/irritation your body experiences.

As you know, with an issue like Ehlers Danlos, the structures that usually hold the joints together are VERY loose. Stability that others take for granted is not an option for you.

This means that minor and major dislocations are common, that bones float too far from each other, that structures that should be solid and supported when performing activities like walking, etc, are neither solid nor supported.

Let's look a little deeper at how this relates to chronic pain and increases in chronic pain.

Let's look at 3 factors:

1. Every time a joint is overstretched, depending on your specifics, the ligaments may or may not take any damage. They may or may not get overstretched and irritated.

Let's just assume that they get irritated.

2. Every time you take a step, your bones probably rub on each other way more than they should. This sets up a Process of Inflammation and could be causing actual damage to the joint linings.

3. The nervous system DOES NOT LIKE the sensation of pain, irritation, or danger. Your nervous system is CONSTANTLY reading signals of each.
If you sleep on your side and your shoulder is pushed too far out of joint, held there only by too stretchy ligaments, the nervous system is going to read, if not pain, DANGER and potential pain. IT responds the same, regardless.

The Pain Causing Dynamic consists of increasing tightness and pain (primarily from the pain enhancing chemicals released by inflammation).

I doubt that you have Tendonitis per se, but I'm positive that you have a tendonitis dynamic, but really more an issue of 'ligamentitis' and 'jointitis'. Meaning, inflammation and irritation of the ligaments and joint surfaces themselves.

I don't think you have to worry about muscle tightness, so much. It would be interesting for me to feel your muscles and see what state they are in.

(Continued in PART 2)

----------------------
Please reply using the comment link below. Do not submit a new submission to answer/reply, it's too hard for me to find where it's supposed to go.

And, comments have a 3,000 character limit so you may have to comment twice.
-----------------------

Joshua Tucker, B.A., C.M.T.
The Tendonitis Expert
www.TendonitisExpert.com

Tendonitis Treatment That Works DVD's

Carpal Tunnel Treatment That Works Dvd cover

REVERSING TENDONITIS EBOOKS

Reversing Shoulder Tendonitis ebook cover

Reversing Whiplash Tendonitis ebook cover

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Nov 27, 2009
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PART 2 - Ehlers Danlos and Tendonitis, shedding some light on the situation
by: The Tendonitis Expert

(Continued from PART 1)

But you do need to worry about bone grinding on bone, about ligaments getting overstretched more and more over time, and the signals that your nervous system is picking up.

Good news/bad news, there's nothing that you can do about the first two factors. Your body is hyperflexible, and there's nothing to do about that. It's good to be aware, but won't do any good to worry.

But there is a lot we can do to help keep your structures happy and healthy.

We support your body to run as healthy and pain free as possible. This includes nutrition and a few things to lower your inflammation levels (and thus your pain levels)

More on that in a bit.

To answer your questions:

1. Yes, it is a shame that doctors and PTs don't know what to do with you. I'm surprised at the PT's total inability to help, but not at all surprised that the doctor's can't.

2. For you, 'stretching' is a bad idea. You will never stretch your muscles and tendons. You can only stretch your ligaments and joint capsule connective tissue by going dangerously too far.

In other words, you can go so far past a normal person's range that you will injure yourself before you will ever really 'stretch'.

Movement is good. Movement is life. Too much movement, ironically, is dangerous. You need to find ways to move that keep everything working well and stong, without hurting yourself. Swimming, tai chi maybe, anything slow and soft. Walking obviously is problematic.

The tough part is, you may not be able to add enough strength with exercise to hold your joint together. Doesn't sound like that's an option? How are you with small weights and high repetition lifts?

3. Icing and Heat. Both are good, with primary attention on Icing. Again, more on that later.

4. Forced adjustment chiropractors SHOULD be concerned about adjusting you. With joint capsules and vertebrae to vertebrae connections being SO loose...fast movement could take you WAY TOO far. This would either pull your bones too far apart and cause injury, or just scare the nervous system that you are perilously close to that happening. Or both.

5. Re: shedding some light on what's going on. Yes, I believe that I can do it. As I said, we can't fix the stretchyness problem, as that's just the way your body is designed, but I believe that we can help you work better and hurt less.

So respond to that, ask any (specific) questions, and I'll expand on the previous.

Dec 09, 2009
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Part 3 - Response to Joshua - Ehlers Danlos and Tendonitis, shedding some light on the situation
by: Heidi

THANK YOU so much for responding to me and Im sorry it has taken me a while to get back.... holiday season got too busy all of a sudden for my family and I.

I have good news about my shoulder... the terrible pain lasted about a week after writing but all of a sudden released and was back to normal within 2 days of the first improvement! I am thinking something was "out" and pinching something else.

I never had that particular issue before. Hope I dont again. The most pain felt like it was right in the core of my shoulder, kind of the underneathe part seemed to be worse later in the problem. Each day it got worse. Eventually it felt like I had gotten a flu shot in that arm with all that sore muscle feeling and it ended up with a pain in the palm of my hand. ?

The night before the big improvement I had made myself a sling thinking maybe the only way it may heal is to totally not use it at all? Not sure if the weight on my neck from the sling (of course causing a neck issue) actually made that shoulder adjust back to normal somehow, or maybe help was from having a heating pad on it for an extended amount of time that night, or maybe I just finally fell asleep in the perfect way for it to fall back to a normal position?

I take near my family physicians prescription limit of Ibuprofen daily as well which probably played a part. I know thats not so good but I could not manage my neck and upper back especially without it.

Strangely Ibuprofen didnt seem to help with the pain in that shoulder. Regardless, I am so happy the shoulder is perfectly fine now. (Well as good as I can expect). You were right in saying it probably wasnt tendonitis because I dont think that would gone away all of a sudden like that.

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Joshua Comments:

Yeay!

I'm glad that resolved the 'out and pinching' sounds about right.

Dec 09, 2009
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PART 3.1 - Ehlers Danlos and Tendonitis, shedding some light on the situation
by: Heidi

Now my EDS regular issues.

After 9 years of dealing with this hip, I had an MRI and as far as joint damage goes he said it looked fine.

That made me happy because the way it felt these last 9 years since I had my daughter, I could have swore I would have needed a hip replacement. I never had the problem before I had her.

He just mentioned the bursitis and ITB of hip. I dont understand if I'm super stretchy why did this happen after I had my daughter? After delivering did the ITB tighten back like a normal persons and put itself in the wrong place? (i understand it especially relaxes while pregnant).

So, if ITB of the hip is from a tight ITB and I'm stretchy....? A negative thing is when he did that MRI, he noticed a black disc in my low back so he ordered another one of the lumbar spine.

That shows all sorts of issues. MRI CONCLUSION...

1. Transitional nature of the lumbosacral junction.There is apparent partial sacrilization at the L5 level, however, if any future intervention is to be performed on this patient, the corrleation with level and radiographs or fluoroscopy is recommended.

2. Desiccation of the disc, disc height loss , mild retrolisthesis, broad-based disc displacement at the L4-L5 level along
with mild facet arthropathy result in mild bilateral exiting neural foraminal stenosis without nerve root compression.

3. There is suggestion of bilateral spondylolysis at the L5 level which is chronic in appearance.

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Joshua Comments:

I wouldn't worry too much about the MRI findings. MRI's are only done on people with pain. But if they were done on everyone, they would show just as much 'damage' and 'problem'.

MRI findings can be useful, but in your case, I wouldn't put much weight to them.

As far as hip pain after pregnancy...You can be stretchy -and- too tight. At the same time. The nervous system doesn't necessarily like this, and makes things tighter to 'protect' you...which puts more pull on tendons etc.

It makes sense to me that if your joints aren't held veruy securly, then the weight changes with pregnancy positioned you funny for a while, and then when carrying your growing (getting heavier with time) child around, that puts new/extra pressure on your structures.

Women with 'healthy' hips get hip issues from carrying kids around. Your hip likely took extra irritation from this.

The ITB is controlled by the TFL muscle. It works hard to stabilize you as you stand walk. It's too tight, and it and it's tendon (the ITB) have to work extra hard.

Combine that with the hip thing, and every other joints lack of structural integrity....

Dec 09, 2009
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PART 3.2 - Ehlers Danlos and Tendonitis, shedding some light on the situation
by: Anonymous

I do experience a lot of muscle spasms in my back and neck. Sometimes just doing nothing but trying to relax in a chair after maybe doing dishes or working around the house I will get a spasm where I cant move or breathe till it goes away (which is only usually 10 secs each time or so).

I assume that is from everything being overworked since it happens after I am more active then trying to relax all of a sudden.

I get a lot of what I call "catches" in my neck. If I'm talking to someone and turn my head sometimes it feels like fireworks goes off and it feels as if I look like I did a double take as it jerks back when it happens.

I was told by several Drs for years that I have fibromyalgia as well. I am confused by the orthopedics reaction to that MRI. He first made it sound very serious and talked of fusion surgery but didnt mention it next visit...only mentioned wearing a corsette brace and having xrays every 3 months to check that it wasnt pinching my spinal cord.

My chiropractor didnt make it sound as bad but did not look at the MRI picts...just the report.

Not sure if this is something I should be seriously worried about right this minute or not. I think the orthopedic shyed away from me because he realized it is a complicated issue.

With uneveness in my legs and also in my torso, and the extra vertabrae being totally fused on one side and loose on the other, fusing the low back could put stress on upper back or hip and make me even worse I am thinking.

Perhaps I am thinking too much. I just know it is not supposed to be this way and I really want to understand what is going on with me and whats causing the pain and most Drs dont seem to be able to know how to help it themselves.

It makes sense in their head but when they have a suggestion on how to help it, that suggestion usually causes another issue so they are confused.

I so badly want to find things I can do to better myself and if theres something simple I'm doing that is causing problems I want to know what it is so I can stop.

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(Joshua Comments next in PART 3.3)

Dec 09, 2009
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PART 3.4 - Ehlers Danlos and Tendonitis, shedding some light on the situation
by: Anonymous

I have a a lot of problems with my ribs feeling like they are poking me wrong when I do practically anything. Also my front chest bones gets in what I call a "locked" position where I have to raise my arms up and out as I take a deep breath in to get that back to normal which makes a loud pop.

The orthopedic had me in a huge corsette back brace for 2 weeks and it did nothing but make me a lot worse.

Joshua: Yes, that sounds like a bad idea. Now you know.

My body is uneven and was not meant to be perfectly straight like that corsette was.

I guess one leg is a little shorter then the other as well which may add to the hip problem. I have prescription orthotics to help that. At this point my hip is hurting more. I totally understand what you said about over stretching and possibly causing injury but I really need to be able to use that hip more.

I have tried to do that stretch where you put the sore hip leg behind the other and stretch/bend to the opposite side to pull that ITB band. I dont know if its working or not. Seems to help a bit at first.

If I were to continue this and simple hip strengthening excercises would it help for each situation or fix that problem permanantly possibly? I totally know that I sound like a hypochondriac but I assure you I am not. I would sound that way to me if I were listening to it all.

The Dr. that 1st diagnosed me with this (rheumatologist) told me that everything that I am and will be experiencing with this EDS is real and not to worry what others think that do not understand it.

Joshua: I LIKE that doctor!

He was a lot of help by showing me the problem, but only prescribed hard pain killer and shots to help me. He said we need to just cover them up becasue they cant be changed.

Joshua: Now THAT I disagree with. That sounds hopeless, and it indicates a lack of knowledge about how to work WITH the body (as opposed to just prescribe stuff and hope it has the effect one wants).

I understand what he is saying mostly but can't help but think that theres something that can at least improve some things.

Joshua: Absolutely. I'm on board with that.

Those pain pills caused enough other problems and never worked nearly as well as an NSAID does so I do not take them.

Joshua: Exactly.

Dec 09, 2009
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PART 3.5 - Ehlers Danlos and Tendonitis, shedding some light on the situation
by: Anonymous

I totally look normal to others which I suppose would make someone wonder if my pains are real.

I understand that too. One day I can be totally fine, but the next I may be bed ridden. Problems may last hours or weeks. Or like my hip...constant.

When you think about how tendons, ligaments, and muscles are everywhere in our bodies and how they make us "work", you understand why I have all these issues.

Sometimes I can be doing something that I thought would have totally messed me up and I will be fine.

Other times I will be doing something as simple as combing my daughters hair and my back will go out. Its crazy.

At least I understand now that most times if something goes "out", it can be put back so I am not as fearful to try new things to possibly better myself.

Perhaps when I'm doing something more serious I am really thinking about what it is I'm doing and being very careful but just combing my daughters hair is such a small task that Im just doing it without thinking and being aware of my muscles etc which allows my ribs to go where they feel.

Thanks for your patience with me and this problem. I really appreciate you and your help.

I realize I have thrown a lot out there, but I am just so frustrated with this. I'm in my 30's and I dont want to just let this totally keep me from living an almost normal life. I know my limits are different then others but there has to be something that can help....even just a little. I just need to find it.

I constantly remind myself that as bad as I may feel, there are so many others who have it worse. :) Thanks

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Joshua Comments:

You are very welcome.

And you're right, there is always somebody that has it worse.

Give me a day or two or three, I'm going to come up with a plan of suggestions for you.

Dec 09, 2009
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PART 3.3 Joshua's Response - Ehlers Danlos and Tendonitis, shedding some light on the situation
by: The Tendonitis Expert

Joshua Comments:

Again, I wouldn't worry about the MRI and that whole direction of thought. Fusing, etc, is, in my opinion, a BAD idea, if only because there is surgery involved, and as you say, it might unintentionally make something else worse.

It's possible that a couple strategic fuses would help, but I'd hold of until the VERY last to do that. And I would only do that due to debilitating pain, -NOT- because an MRI shows that you should.

I have an MRI that shows almost my entire spinal cord blocked by L5-S1 disc rupture. I had a BAD 3 months, declined emergency surgery, and now i'm pretty darn good. I can do most everything, but it feels like there is a screwdrive lodged between my discs. Hurts to put my socks on, hurts some to bend over, I can do lunges but not squats at the gym.

My point is, a doctor would rush me to surgery based on the MRI findings. And, I'll take some limitation over possibly having my spinal cord nicked/cut/severed during surgery, plus the other potential downsides like instability and infection.

Speaking straightforward to you, you have ED, and you're kind of screwed. All your joints are instable. Period. There is no fix (that I know of).

For you, it -is- supposed to be this way.

Unlike your one helpful doctor, I don't believe that the only option is to 'cover it up' with painkillers.

They may be necessary for you, but have their downsides, as you mention.

So the intention becomes finding how to keep your body as healthy and pain free as possible while living an active, vital, loving life.

1. Find peace in your structural situation.

2. Expect a certain amount of pain and discomfort in your present and future.

3. Learn how to keep your body as healthy and happy as possible, how to avoid things that increase pain (sleeping on your shoulder), etc.

Doctors don't know how to fix you, because there is no 'fix'. I don't know how to fix you, but I believe there is ALWAYS a way to make things better, and I have a certain familiarity with how the body works, and I trust that I can offer you suggestions that will help.

Jan 19, 2010
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PART 4 - Continuation..... - Ehlers Danlos and Tendonitis, shedding some light on the situation
by: Heidi

I know its been a while (holidays) but I wanted to update things.

I will focus more on just one problem area instead of trying to hit them all like before when I had just gotten all the results of my MRI's and was overwhelmed. (Sorry).

My hip....Orthopedic said I had bursitis, ITB, and of course my Ehlers Danlos. I decided since the phonophoresis they gave me helped my hip (atleast temporarily), that I will try to do some fitness with it to build some muscle around the problem and maybe that would eventually take the issue away?

I have had basically no exercise with it for about 12 years besides limited walking since it seemed to always make it feel worse. I babied it.

The following is no big deal for most people but is something I've not done for years. I am marching in place for 10 mins with the wii fit, then jogging in place for 10 mins with the wii fit. Normally if I did any stepping my hip would hurt and click each time I took a step. Now, it is only irritated a little when I do the marching....but not the jogging for some reason. The irritation doesnt last after I exercise which before....when it would start to hurt, it would not stop until I laid around and didnt use it combined with anti-imflamatories for weeks.

So, Im thinking this may good for me. Am I possibly right?

I'm confused....when I march in place I feel like my hip muscle spasms....but when jogging in place it doesnt. Why is this? You would think jogging would be harder.

It seems with a march my muscle is always tight, but when you jog theres always that second where it has to relax while the weight goes on the other leg.

Can you help me to understand this better and possibly let me know if what I am attempting is good for me and if it could eventually help my problem?

Sounds crazy but since I havent used this except for little walking aound the house for years, I fiugre there is not too much muscle there to help keep things from rubbing wrong?

Also, when I march in place and that hip gets so tight, it does help to stop and stretch that hip a little then start back up again. I just dont understand and am not totally comfortable about doing the stretching since I have the EDS and am hypermobile stretchy already.

Is this stretching of the hip though it seems is helping, going to make me worse in the long run?

I really need to lose about 20 pounds so there is less weight on my joints and I havent found anything else that does not mess up my back. Thanks for your help again.

I really appreciate all your information and am so interested in learning all I can so I can understand why it feels the way it does and hopefully be free from this issue one day.

Jan 19, 2010
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PART 5 - continuation...forgot something. - Ehlers Danlos and Tendonitis, shedding some light on the situation
by: heidi

I thought it may be important to add that I have been doing mini fitness for nearly 3 weeks and my hip feels better then it has in years.

I'm just fearful that one of these days its all going to start up again as I don't know if the relief is still from the phonophoresis or if its from building up muscle there.

Thanks. :)

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Joshua Comments:

Hi Heidi.

That's a great thing that some exercise is making you feel better. Long explanation, but let's go with that some expercise is GOOD for you.

Makes muscles and tissue stronger, more 'tuned up', more able to respond, better able to get waste product and irritant out and new blood and nutrition in.

I don't know why walking would hurt more than jogging.....I can only surmise that the extra 'bounce' from jogging is easier on you than the slow movement (grind?) of a walking motion.

Sometimes it's better not to ask, just to go with what feels good.

1. When stretching, make sure that muscle is actually lengthening, as opposed to the muscle not lengthening but because the ligament is loose, things move anyway.

Does that makes sense?

2. Access to a pool? I bet it would be great for you to exercise in pool. Just walking arond would be weight bearing in a variety of directions, doing karate moves would work the muscles without the load of full gravity (water provides resistance and slows you down too).

3. In short, the exercise makes you feel better (when it makes you feel better instead of causing pain) because it helps EVERYTHING work better.

4. Take care, when you are feeling stronger and able to do more, you will likely think/feel that you can progress even faster/do more. I would make yourself increase SLOW AND CONTROLLED, otherwise you might feel great, jump over a chair, and then hurt again and not be able to exercise.

Fundamentally, your structure is dangerously loose. Always keep that in mind. If you pay exquisite attention, you should be able to do a lot more than you have been able to lately, and manage the outcomes better.

May 22, 2010
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I have the same problems...
by: Jeanne Potter

I am also a 37 year old female with Ehlers Danlos in Chicago, IL who story is quite similar to Heidi.

I would like to add that while her MRI results of her hip were normal, if she had an MRA it could have potentially identified a labral tear. I had a labral tear repair on my left hip performed 6 months ago and they were surprised to find my cartilage was ground to a mush. I have a little bit of relief from the surgery, but not enough to make it worthwhile.

So I have decided not to have anymore surgery even though my right hip probably isn't much better, my left shoulder has been out of socket since November and my peroneal tendons are probably torn.

I am on a lot of pain medications because I'm in excruciating pain (especially in the morning...what's up with that?) and I don't want to spend my life in bed. I will start adding your ice massages to my daily routine (I'm already using ice packs throughout the day, but the massage part sounds really goooooood!:) ) to see if I feel anymore relief as it obviously did for Heidi.

Thank you very much for posting so much of Heidi's updates and for being honest about what Ehlers Danlos can do to a person.

Too often I am told something will make me back to "normal" (like there ever was a normal, ha!) and it's almost worse when I get my hopes up only to have them dashed.

Thank you again. I enjoyed your site thoroughly.

Jeanne Potter

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Joshua Comments:

Hi Jeanne. Thanks for speaking up.

On the 'getting hopes up' topic, yeah, anybody that says it's going to get better, or will reverse...is just wishful thinking, or uneducated, or willing to speak (what seems to be the) truth.

Having Ehlers Danlos means one's connective tissue is genetically weak/too elastic. If one has it more than 'mild', it's a serious life long issue.

It may be harsh to say, but I prefer facing facts instead of hoping for the best.

It's one of those diseases without a 'cure', where the best path is to support and strengthen the body as best as possible, understand the problem, and LEARN about your body and how it works, and especially, learn about the pain dynamic and how to keep the body as happy as possible.

By default, there's going to be pain and problem. With the right self care, you can absolutely A. reduce the pain and B. ideally keep it to a minimum.

Do start ice massaging and such, and keep us updated.

Jun 22, 2010
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EDS in London UK
by: Anonymous lady London

I stumbled upon this thread when I was poking about your site Joshua and I certainly can identify with Heidi.

I'm nearly 57 and much of the pain I experience is owing to bad physiotherapy & bad advice I'd been given over the years, leading to multiple injuries that don't heal and spasms; my EDS wasn't diagnosed till about 10 years ago - until then all I knew was that I was very hypermobile.

I've found that things always work better when I listen very carefully to what my body is telling me. Unfortunately we have to do other things in life than just listen to our bodies, and that's when things can go haywire.

One of the most useful things I've read on your site is the new ergonomics.

With any luck too, the advice about ice & tendons will help me a lot. I used an ice-lolly on my achilles earlier - they're great because you can keep hold of the stick end without getting your fingers cold.

I look forward to reading more of your great advice. Thanks!

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Joshua Comments:

Ice Lolly. Never heard that before. Cute!

As you alluded to, one of the big issues with EHD is inflammation (and thus pain). Icing is one of hte best methods I know to reduct inflammation, plus it's all natural.

The more circulation, the better!

You're welcome, and please keep us all updated.

Jun 25, 2010
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It works! and a question - Ehlers Danlos and Tendonitis, shedding some light on the situation
by: Anonymous from London

Thank you Joshua.

I've now realised that the ice lolly trick doesn't really work, because you can't push hard into the tendon & inflammation in the way you describe. So I filled several plastic cups with water & put them in the freezer & followed your advice; I used a towel to grip the block of ice (it came out of the cup)

When I woke up this morning I gently stretched the achilles tendons before I got out of bed, then after a few more hours I further stretched them (& my calf muscles) by leaning on the wall as per one of your illustrations. That's actually an exercise that I used to do as a runner, and I've been avoiding it because I thought it had made the achilles worse, but I now realise that what had been making them worse was going up & down stairs as exercise - something else I picked up from this website! :-)

Now the tendons feel so much better! I no longer feel any trepidation about going on holiday at the end of next week. Thank you! The achilles problem had been going on for months.

I'm now wondering whether I can do the same trick for the right-hand side of my neck which is forever tightening up and leading to nerve pain up the side of my face & then headache. Though there's no inflammation (you might know that EDS people often have absence of inflammation in an injured area) and I'm not sure if it's advisable to push ice (or anything else) into my neck :-o
I'd appreciate your opinion and advice about this.

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Joshua Comments:

Essentially, Icing reduces pain whether you 'have' inflammation or not. I don't get into the debate much about whether inflammation is present or not. In my book, it doesn't so much matter. If you have pain, ice helps, for a variety of reasons.

So I suspect that it will help in your neck. Specifically, ice massage, as you get the benefits of cold with the benefits of massage.

We're just sponge. Squeeze the sponge enough, and everything gets happier.

Having said that, go easy. If you add the shock of cold to a location that reacts poorly to shock (because the nervous system is on super-defense mode) then in can make things tighter. So ease into it, gentle and easy, at first just massage, then add in something cold but not frozen, then something frozen.

On the Achilles topic, yeah, sometimes stretching -isn't- a good thing. Everybody and every situation is different. The nature of the beast is that you just have to experiment, trial and error, until you discover what works and what doesn't.

I still like the lolly idea, but yes, I can see how there would be a mechanical disadvantage to it...

Dec 14, 2010
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Thanks.
by: Anonymous

Hello.
I'm an occupational therapist who just received a patient with ED. Thanks for you post. Although a trained professional its difficult to figure out the correct plan of action. ED is tricky.. i'm going to try to help my patient find the correct balance of stretching, strengthening, rest, activity modification, splinting, and modalities.. a complex mix.. we'll see how it goes.

Thanks again.

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Joshua Comments:

Great!

Let us know how it goes. As you know, every body is a little different, etc, so finding the right balance is different for everybody, and can be more complex the more extreme their Ehlers Danlos is.

Dec 30, 2010
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Chicago EDS Chick Part 2 - Ehlers Danlos and Tendonitis, shedding some light on the situation
by: Jeanne Potter

Good day to you Joshua - Happy almost NYE!

I wanted to share an issue that I'm experiencing with the ice therapy. It appears as though certain muscle groups are seizing up because of the ice and my physician recommended that I alternate between the ice and heat. This is happening most often in my shoulder/neck area when I'm icing up my chronically subluxed shoulder.

Heat therapy works great for the pain in my seizing neck but then my muscles become weak and I have a harder time keeping my shoulder in place. You see, my front muscles are practically the only thing holding my shoulder somewhat in place. So then I start the ice therapy and my muscles seize up in my neck again.

Can you give me some thoughts on what I can do to stop my neck muscles from seizing from the ice therapy?

On a side note, the ice therapy is working very well for my hips (which both have torn labrums and mushy cartilage). It's the only thing other than my pain medication that offers me relief.

Best idea ever...thank you!!!

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Joshua Comments:

Hi Jeanne.

Everything you say makes sense.

If your muscles are the only things holding your shoulder in place, for instance, then your nervous system is operating under a certain amount of panic.

So the 'shock' of cold can/is making the nervous system lock your muscles in spasm to 'guard' and protect you.

Not necessarily good or bad, just how it works.

Heat brings blood and nutrition to the area, and muscles and the nervous system LOVES that.

But, it relaxes the muscles and thus you feel 'weak'

Ideally, you find an effective balance between heat and cold, and try to strengthen your muscles with strength building exercise.

Also, nutrition.

See Magnesium for Tendonitis.

Check out the Vitamin D pages on www.Easy-Immune-Health.com

And protein, and lots of it. Did I say lots? Yes, I mean lots. You know that whole thing where we lose a pound of muscle mass a year after age 35? Mostly due to protein deficiency.

And if you're not doing lots of Bone Broth as the best Tendon Supplements, I certainly suggest that you do so. Not a fix, but definitely a support.

And keep icing, especially the hips. Icing, ultimately, is the best pain decreaser I know of.

May 14, 2011
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Hope with EDS
by: Hannah Louise

I recently went to the doctor for a swollen ankle lasting longer than 2 months and he 1.) doesn't believe I have EDS even though I've been diagnosed and 2.) told me there was nothing I could do, that its normal and will go away on its own.

After reading these stories and seeing that it's not just me being turned down by doctors saying they don't know how to help or giving false hope it makes me want to find someone out there that can help and will give me answers.

I was diagnosed when I was 15. I was doing three sports a week, almost daily and when I came home and couldn't walk and had to be iced in hopes that it would be better by morning my mom stopped taking no for an answer and looked for what was really going on.

They told me I had to stop my sports and told me all this other stuff which came with Ehlers Danlos Ssyndrom. I was already enrolled in those classes so I spent a good 3 to 4 months watching people do what I knew I couldn't. It was hard participating in sports, always feeling like I couldn't keep up. But it was harder watching them do it and feeling left out.

After long thoughts on this I finally got out of the 'denial and grief' phase and started doing what I could and trying to find an answer. I was studied in the hospitals and was visiting a doctor so many times during the week it was like a practically lived there. and all I kept hearing was, "I've never seen this before!"

After reading through this article, I'm done hearing about ways to cover this up and 'hope' for a cure. I just want answers and the best possible ways to deal with what is going on right now with my body. This article has helped so much, help me think of new ideas and helped me think of better and more effective ways of finding solutions and answers.

I just would like to say thanks to everyone who wrote here. I've only been living with full awareness of my condition for 4 years now. I'm 19. and the future may have its complications, but if there were more conversations and people like you who posted here, I have no doubt that situations could be improved or people could find help for EDS.

So thanks again. this really helped :)

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Joshua Comments:

Hi Hannah.

That's great, I'm glad it's helped. As they say, knowledge is power. We all have our challenges, and I firmly believe our challenges are there as a training ground of some kind.

If you're around on the internet, feel free to point people to this page, and spread the word.

Oct 23, 2014
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Just diagnosed with Enhlers Danlos Syndrome at age 41
by: Anonymous

Joshua: I am a 41 year old woman who just was diagnosed with Eds hypermobility.

I am in much worse pain this year than I ever have been.

I agree with much of what you have said: I do know there is no cure; however I think your statements are a bit harsh and hopeless.

I do think that there are ways to improve alignment with manual therapy and strength with the proper training on ways to use your muslces.

You make it sound as though it is only somethjng we have to learn to cope with and live with but I need to hope that there are ways to improve.

I have seen people improve with pt and life style changes. Of course we will not be pain free but we can be better than we are when we learn how to strengthen properly.

Your advice is great but your overall attitude towards this is a tad flippant when we are dealing with a devestating situation. If we lose hope then there is No way we will be able to keep going.

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Joshua Comments:

Hi Anonymous.

1. Have you always been hypermobile and had problems from that and you're just now getting a diagnosis? Or have you generally been fine and are now surprised to find out that a genetic disorder is the cause of pain? I'm not clear from your comments.

2. "I do think that there are ways to improve alignment with manual therapy and strength with the proper training on ways to use your muslces.

I have seen people improve with pt and life style changes. Of course we will not be pain free but we can be better than we are when we learn how to strengthen properly."

We're certainly on the same page and essentially saying the same things there.

3. "You make it sound as though it is only something we have to learn to cope with and live with but I need to hope that there are ways to improve."

Genetic connective tissue disorders can't be fixed. So it IS something a person must cope with and live with.

Having said that, there are different degrees of hypermobility.

Some people, nothing is going to help. Some people at the other end of the spectrum can become and live pain free with some smart self care.

I hope that doesn't actually come across as flippant, because that's not at all how I mean it. I mean it like, it is what it is and on a person to person evaluation, if we want to improve our daily quality of life there's certain things we need to learn and do.

Hope is a huge and necessary driver for all of us (some more than others). And, false hope, in my humble opinion, doesn't help much.

I assert that knowing the facts gives real hope. And facing the facts (and finding/searching for them, even before that) is vital to finding answers to devastating situations.

One must accept that the ligaments don't do what they ideally should be doing, and understand the physical realities and results and outcomes of that scenario, and then one can learn to adapt/adjust to that to make life better.

I'm all about making life better, and I apologize for anything that occurs as flippant.

Jun 30, 2016
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Internal issues with EDS, too
by: Anonymous

I'm glad I ran across this site! Like many others, I went far too long being misdiagnosed, written off, given the wrong treatment, and/or told they have no idea what's wrong and that my case is too complex.

Also, not many doctors know what EDS is, nor feel comfortable diagnosing it. Finally, at age 30, I got my diagnosis, despite showing major symptoms right at birth with a severe umbilical hernia that only got worse as I aged, with surgery being necessary at age 5.

My situation is a bit unique, as I show blatant signs of both Classical (super stretchy skin especially, with poor wound healing) and Hypermobility (missed my calling as a circus performer, I suppose!).

In addition, not only do I have the typical joint/muscle issues, chronic pain, instability, etc, but the most nagging thing for me is how it affects my internal structures. All my pelvic organs have prolapsed, with the rectum having done so beginning in childhood and progressing as I aged.... My only option is to opt for an ileostomy at this point, which frightens me, as my digestive system is already a mess thanks to gastroparesis, gerd, malabsorption, chronic constipation, inflammation, food intolerances and reactions, and dysbiosis, to name a few.

Not many people seem to discuss how EDS affects the internal structures, but it surely does, considering how our organs are made up of and held in place by connective tissue. In addition, the impact faulty tissue has on the immune system can be quite severe, as well.

And let's not forget about insomnia, fatigue, brain fog, anxiety/depression, blacking out/dizziness, blurry vision, palpitations, and other bothersome symptoms that go beyond just the joints (like you mentioned, the nervous system is involved, which affects everything)

My Joints and muscles are always sore and I feel like my shoulders, hips, neck, back, and jaw are on the verge of coming out of place. Tmj hurts all the time, which shoots pain down my neck, chest, back, shoulders, arms, and down to my feet.

I have nerve pain down my arms and legs, and I have constant numbness and burning of the tops/sides of my feet, ankles and parts of my shins. My skin is prone to ulcerations, as well. IT band is irritated, glutes and hips are chronically tight, scapulas are winged and unstable, ribs get so tight it's hard to breathe, floating ribs seem to "catch" on another structure, head feels so heavy on my neck, lots of knots in my muscles and crepitus when I move.... The list is long. I'm always stiff yet top loose at the same time.

Despite being diagnosed, no one knows what to do with my condition. I see a naprapath for body work, chiropractor for acupuncture and breathing treatments of glutathione, another chiro for adjustments, a functional medical doctor, a primary care doctor, and I have a colorectal surgeon who has had 2 other patients with EDS that affected their guts, but is worried how I'd take to surgery, despite knowing my colon isn't functioning and that surgery is my best bet at a chance of a different quality of life (but would it be a better one?).

I'm also prone to constant hiatal hernias and other upper gi issues. I've been attempting to strength train (i use to be athletic, but always got injured and had a hard time putting on muscle), and would love any guidance you have with this. I feel it's vital to do to keep my joints and organs in place, but it can also backfire and cause the opposite. I don't go very hard with it.... I know my limits at this point, but I want to be sure I'm not doing anything potentially harmful.

I'm glad to know that all the issues I've had throughout my life (there's more I didn't list here) can be finally explained by potentially one sole root cause, but it's depressing to know there's not much that can be done, and what can be done could potentially make things significantly worse. I didn't expect my life to go this path, but I'm praying I can find some answers to at least help me make the right decisions and gain some quality of life and peace.

If you have any suggestions for my situation, I'm all ears! Also, could you expand more on diet and supplements, as well as the strength training aspect? I've always been focused on holistic health and nutrition, but with my gut issues, it's hard to find foods that don't flare up something major and cause widespread inflammation. I eat a plant based diet, no processed foods, no starches or grains, focusing on fruits and veggies (much of which I blend to aid in digestion).

Thank you so much!

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Joshua Comments:

Hi Anonymous.

1. Do you/can you intake powdered collagen?

2. Do you/can you intake home made bone broth from organic/pastured beef or chicken bone/joint cuts?

3. Do you supplement with Magnesium?

4. Do you eat any fat?

5. Why a plant based diet?

Jul 26, 2016
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In so appreciative of Tendonitis expert!
by: Heidi

It's been years since I wrote in this thread. My body is worse of course and we've added Hyperadrenergic Pots to the situation. That is actually causing me more troubles in life.

What I wanted to add was I found a group on Facebook that had an EDS protocol consisting of Aloe, diatamacious earth, d ribose, pqq, magnesium, a probiotic and a few other things.

It was studied for years by a lady who has ehlers danlos etc. If you are interested, it is a closed group called something like ehlers danlos and polysacharides.

If you can't find it, do a Google search on Deborah Cusack protocol. I am so thankful for people like Deborah AND the tendonitis expert.

They have both truly cared enough to listen and try and help. I wish my local Drs would do the same. Thank you Tendonitis Expert for all your help!! I have forgotten how to get to this helpful site and I'm so thrilled someone else commented, so I could get an email notification with a link to it! :)

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Joshua Comments:

Hi again Heidi.

Glad you made it back! Grateful for you too.

And anytime anybody ever makes a comment here (there's only been that one for a good while now lately....) you'll get a notification email.

Here is the link to the facebook group: https://www.facebook.com/groups/edsandaloe/

Sep 28, 2016
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How does one with ED 3 treat tear in tendon and inflammation in tendon & know the difference in the pain?
by: Anonymous

I have been diagnosed with hyoid bone syndrome, I have a history of tendinitis but am concerned about possible tears in the tendon and muscle due to my genetic condition of ED3 and the way my body makes/uses collagen.

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Joshua Comments:

Hi Anonymous.

Do you have tears elsewhere currently or historically?

Oct 15, 2016
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Reply no tears or injuries previously or currently to tendons
by: Anonymous

I don't have any tears or injuries to any tendons previously or currently in my body.

ED only affects the ligaments in type 3.

Hyoid Bone Syndrome is a new diagnosis and very rare. The hyoid bone is pressing on the carotid artery in turn pressing on the facial artery and facial nerve. However the hyoid bone can continue to grow and damage the tendons attached above the hyoid bone.

My concern is the damage the bone is causing by tearing the tendons. Surgery is to shave the bone tissue and reattach the tendon.

However depending on the type of damage to the tendons my concern is shaving the bone will relieve the pressure but not alleviate the damage to the tendons.

----

Joshua Comments:

1. Is the hyoid bone growing?

2. Are tendons being damaged?

3. How was it confirmed that the hyoid bone is pressing on the carotid artery is pressing on facial nerve?

Oct 18, 2016
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Reply hyoid bone and ED type 3
by: Anonymous

Yes, the hyoid bone is growing, this is what is causing problems. Because the hyoid bone is growing at the top part it is pressing on the arteries.

I want to know if the tendons can be damaged because the bone is growing into them.

Diagnosed by ruling out multiple other conditions and by physical examination of the hyoid area.

When pressed on the left side the headache is duplicated. Lidocaine injection relieved the pain briefly and kenalog injection was supposed to help but it did not.

I see a ENT and neck surgeon tomorrow, Wednesday October 18,the previous ENT had only performed the surgery twice.

----

Joshua Comments:

If the bone is growing into the tendon, then sooner or later that will be problematic. Sounds like it already is.

First it will just indent the tendon, and it gets worse from there. And depending on the amount of movement the bone is doing, then that would cause damage as it essentially saws into the tendon.

And if you can just press on it and get an immediate headache, then looking at surgery, while not the most pleasant thing in the world, is likely the smart and necessary move.

Oct 24, 2016
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muscle strength and EDS
by: Ellen

I am 63 years old and have just been diagnosed with EDS. I have lots and lots of chronic pain. I ache all over in my skeleton, and my hips are a lost cause. They are so tender I can barely walk and I cannot sleep on my side.

When I was young, however, I was a dancer, and I was very strong. I never had any dislocations at all, while everyone else in my family with EDS has and did -- my mother had constant hip dislocations, my brother had dislocations when he was young, and my son can dislocate his wrist and shoulder at will.

I believe it was my physical strength from the dancing when I was young that kept the EDS from really hurting my joints until I was much older.

The other contributing factor, I believe, is that my father was one of those people who is just naturally super strong. But he was also the most sedentary person I have ever known. He joked about exercise, quoting some famous composer: "Whenever I feel the urge to exercise, I lie down until it passes." In spite of that, he was truly strong. He was a physician, and did an Army internship, and had to go through basic training again. All these interns had to do an obstacle course, and my dad flew through it with no trouble, while the others were passing out and vomiting and stopping.... ANyway, he was strong, and I got some of his strength, and I think strength is very good for EDS. And I think walking is very bad for it. So I'm going to start lifting small weights again, using a book like Joyce Vedral, which I have done in the past and which worked really, really well for me, while anything aerobic, once I was past 30, just caused injuries, some of which have never gone away (hips). And my joints are getting looser and looser.

Of course, I am not a doctor and could be wrong, but I think strengthening muscles so they can hold you together more easily may be the way to go.

Oct 19, 2017
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hEDS with tendonitis
by: Debora

Following this blog. I'm an hEDS zebra. No dislocations or surgeries, but OA, Osteopenia, IBS, migraines, insomnia, chronic pain and exhaustion.

I posted under another EDS post with a gentleman with similar issues. Thank you for your EDS assistance!

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Joshua Comments:

Hi Debora.

I'll just respond briefly since you said you posted elsewhere (which I'm presuming is a bigger post).

1. Ostopenia is a nutritional insufficiency issue.

(Should be) easily fixable (despite your doctors having left it unfixed, sadly but unsurprisingly).

2. IBS is damaged gut ecology. Should be fixable with diet (adding in good stuff/eliminating bad stuff) and nutrition.

3. Insomnia is most likely due to nutritional insufficiency. Almost certainly fixable.

4. Chronic pain makes sense with ehlers-danlos. As is the osteoarthritis. Should be able to be dialed down with fixing 1-3 above.

What's your Vitamin D level?

Have you taken any fluoroquinolone antibiotics like cipro/ciprofloxacin or levaquin/levofloxacin before?

Jun 27, 2018
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Another Zebra
by: Anonymous

I really like your comments. They reflect my experiences, actually. I am 50 and have Ehlers Danlos (either Hypermobile or Myopathic type) (diagnosed finally two years ago). I also have a host of autoimmune diseases and fibromyalgia. I was also hit by a car & thrown into a street sign when I was 25, which of course made things much worse. Pain is a constant in my life and has been for as long as I can remember.

P/T is a consistent part of my life now. I treat the pain (because pain, of course, contributes to dysautomnia and tachycardia - both of which I have - and makes sleep worse, which reduces replenishment of tissues). But pain treatment by itself doesn't make the condition any better (or any worse, really).

I am experiencing increasing dislocations over time. Starting with toes, then pelvis/hips/sacrum, rib subluxations, then fingers & thumb on left hand. But most of my joints are very loose. Over time I have injured my ankles repeatedly in falls and now am recovering from a detached ligament and wearing permanent bilateral ankle braces. I still pronate my ankles, but I can't fall as far to the side, which limits the damage.

I started using a cane at 25, and now I use arm crutches and scooters to get around. I also have tendonosis in both arms now with some contracture on the right.

All that said, I am not taking it lying down. I am in a program to lose weight and increase strength without stretching the tissues. I do a lot of isometric exercises targeting specific tissues. I have p/ts who are familiar with EDS who have helped me find safe ways to strengthen and ways to put back dislocations on my own, which has been immeasurably helpful.

I use a lot of ice for injuries as well.

I have found with these supporting systems in place I can get modest to moderate improvement that helps stave off the eventual day when I will require a wheelchair. I'm very pragmatic about my illness. I am going to get weaker over time. I have witnessed it throughout my life. I have weakened muscles throughout my structures. But taking these steps does HELP. And really, there isn't much else that is possible to do for EDS. Surgery is very risky for EDS (due to tissue tears and our secondary conditions) and for me at least, are a last resort. But there are things we can do. Kudos on providing such helpful information.

All my best, Jen

Aug 19, 2018
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Our experience
by: Anonymous

My daughter has been to many EDS centers and has seen most of the experts that regularly present at their annual conferences. We did that because prior to seeing all of them, physical therapy regularly encouraged to do light weights concentrating on strengthening, which regularly caused serious injury.

The consistent advice from all of the EDS experts was No weights, stretching or fast reps whatsoever. They graded exercises from raptor down to baby bird and told her to stay at baby bird out of the water. In the pool, she could very SLOWLY work her way up 2 levels max. It was very hard for her because she wanted to go full speed ahead. Once she realized doing "baby bird" levels and water made her actually feel much better and she has not had any injury since.

We have learned that it’s very difficult to find a therapist that truly knows the idiosyncrasies of EDS because all norms are thrown out. EDS is a large spectrum of issues and varying degrees. Finding practitioners that are truly knowledgeable is a major challenge. Thank you for this forum. The more discussion, the higher level of recognition.

Joshua Comments:

You're welcome, and thank you for sharing.

Please feel free to say more about the bird scale of exercise/exertion, and your daughter's particular idiosyncracies, etc. She does fine in the water?

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Ehlers Danlos and Tendonitis, shedding some light on the situation

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