Ehlers Danlos and clicking painful hips

by Marie

Ehlers Danlos and clicking painful hips

Hello and thank you for your very interesting site!
I have ehlers danlos syndrome and was diagnosed about a year ago. I am now 33 yers old.

My hip problems started when I was 17, and I was told I had a snapping hip on my left. I went trough two hip surgery to correct the snapping hip but it did just get me more pain.

The last year I understood that my hips where very hypermobile and they started to click in each step. Not the snapping hip I've had since I was 17, now it also was a painful clicking inside my hip joints.

Every step I take is now so hurtful and I walk with a crutch to let the worst hip rest a little.

Since december 2012 i've done some xrays, but the doctors says it all looks normal and they are confused about my pain and very loud clicking.
When I read about hdd it sounded like my hips, except from the xrays that doesn't show anything abnormal.

In sweden where I live I have never heard someone talking about hip dyspasia in adults, maybe that is the problem with my hips anyway?
I'm sending you an xray picture of my hips.

I'm starting to be desperate, the wheel chair is near and I have four kids to look after for.
Maybe you can give me some advice?

Hello Marie,
Fortunately you don't hip have hip dysplasia. The sockets, acetabulum, are normally formed and roofed, and the hips sit nicely in the sockets.

There are two types of hypermobile hips. One is hdd or hip dysplasia. That you don't have. The other is simply known as hypermobility and is considered normal, although it certainly can be painful. In the groin, hip and upper leg.

And hypermobility is what eds is all about.

Is it possible for you to send to me at contact a larger file of your pelvis. This one is only 13KB and not diagnostic.

A little test for you: Lie flat on your back and first pull the less painful knee to your chest. Does it hurt? Where? Now compare with the worse hip.

Secondly, pull the knee towards the opposite shoulder. Stiff or very mobile? Sore? Where?

Now rotate the hips. Again hypermobile presumably and sore? Where?

Now, would you please go to this page and scroll down to Hypermobile hip dysplasia CAM FAIS patrick's fabere test. I expect it's very mobile, but sore? Where?

Lastly, slide your thumb, use a little oil, down the inner thigh starting right up near the hip in the groin. Deep and quite hard. Is it very sensititive. Compare with a friend. It shouldn't be particularly tender and in your case may be excruciating.

Your xray. Like I said too small, but I think I see small cam and pincer deformities of Femoro acetabular impingement syndrome in both hips.

There's a very bizarre condition in which hypermobility and fais co-exist in the hip. One causes increased movement, the other decreased movement, a complete contradiction. The net result is severe pain in the groin.

Both may progress to osteoarthritis of the hip and I think on the hip on the reading left there may be some thinning of the cartilage.

This condition may lead to mid lumbar pain. No back pain?

Was this X-ray taken with you lying down?

Quite a lot of questions for you, Marie. Please keep to the same thread with your answers.

There is something to be done.

Dr Barrie Lewis DC


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May 10, 2013
EDS and hip pain
by: Marie

EDS and hip pain

Hi again.
I'm waiting for an mri, my orthoped has ordered it but it takes time.

Both my PT and the doctors I've seen are agree that it is clicking from the joint and not soft tissue. But they also think that my earlier snapping hip surgeries have made my problems worse and the hip more hypermobile.

In my health journal from post op fifteen years ago, a doctor has written that It's more likely that I had a sliding of the caput rather then snapping hip, but no one informed me and there was no more contols of my hip and I learned to live with it until I became worse three years ago when my last child was born.
I will keep searching for a good chiropractor here.

About my eds, I have a mix of hypermobile and classic type and I have some skin symptoms. A little bit more stretchy than a normal person, and I have those wide and thin scars and I get bruises very easily.

Looking forward to your exercises!

Hello Marie,
I'm waiting on the video specialist before I can launch the videos on Youtube. In any case, they are a mixture of the exercises already at Lower Back Exercises so, unless you are already familiar with them, you will really battle with these hypermobile hip exercises. Start with them every morning before getting out of bed. Then, when they are launched on YouTube you'll be ready for them. There are eight stages, and quite complex.

Fortunately I see no signs of you having had a slipped caput, known in English as Slipped Capital Femoral Epiphysis. Go to
Hip Arthritis and scroll down.

In order to make the hip socket deeper there is a layer of fibres known as the labrum. I suspect your problem may be to do with this collar of ligament that makes the hip socket deeper and more secure. The MRI will tell all...

Dr B

Go from EDS and hip pain to Chiropractic Tips …

May 09, 2013
by: Marie

Thank you for your answer.
I understand that there is no quick fix for this. I've contacted a couple of chiropractors nearby earlier, but because of my eds they dont want to treat me.
Can the FAI cause the loud clicking and clonking or do you think it is subluxations? The clicking is in every step I take, do you think that the arthritis will be more progressive if I keep pushing me to walk although it clicks and locks and hurts so bad? It actually feels like something is breaking inside my hip joints and tigh bone.
Here in sweden, there is a hospital wich is specialized on cam and pincer surgery, but as far as I understand, surgery with my condition is not to recommend?
I also have cronical pain and clicks in my sacroiliac joint since my last pregnency.

I'm so greatful that you take the time to answer and I am going to read all your pages related to this and I will check back here so I dont miss if you put up a page with the exercises you talked about!

Hello Marie,
Contact some other chiropractors. EDS is definitely not a contraindication for treatment, but it does mean that techniques have to be modified and perhaps others such as an activator used.

There's nothing on the XR that explains the painful clicking you are getting with every step. I suspect it is soft tissue in nature, and thus you should push for an MRI scan of your hip. It's expensive, but not unreasonable seeing that you are becoming so disabled. I wonder if it's not related to the surgery you've had.

Those are very small FAIS deformities and I wouldn't recommend surgery for them even without your EDS.

I would start with our basic lower back exercises and, when pulling the knee to the chest, gently rotate the knee from out to in, in a circle. It shouldn't be painful but some discomfort is acceptable. I good exercise should "reach" the painful spot, but not cause pain.

Regularly slide your thumb down that groin to inner thigh muscle with some cream. It will hurt, and you may get a bruise.

I'll try to get to those exercises today, meantime start pushing for an MRI and another chiropractor. It's going to be new ground for any chiropractor (I can't say I've ever treated anyone with EDS in 35 years) but I've learnt that the basic principles of chiropractic, applied gently and intelligently work for most joint conditions.

Good luck!

Do you also have the skin lesions of EDS?

May 08, 2013
Groin pain
by: Marie (sweden)

Groin pain

Thank you for your answer, I have send a bigger x-ray picture to your email.

I'm very hypermobile in my hips and when I do the tests you asked for, there is no limit or very much pain when I put my knees towards my chest or shoulder. Only my hamstrings are a little tense. When I rotate my hips it hurts in the groin.
On the Fabere test, the left hip has no limit and no pain to talk about, and the right hip is a little more stiff and if I would push it harder I think it would pop to badly. In both hips there is pain in the groin but this pain is there all the time and it is under pressure (walking, the weight of my body etc) that makes it hurt more. Not just the movement laying down.

When I slide my thumb, there is pain in the muscle, but not worse then the daily pain in the groin.

I have always back pain in the lower back, especially since I walk with just one crutch, its only one of my arms that are strong enough to hold a crutch. When I lay down, I can easily force the clicking in the groin. The clicking and clonking are not snapping hip on the outside and not snapping in the inside muscle, it is in the groin and hip joint. When I walk it sounds like bowls filled with both small and big rocks get crushed. Because of my syndrome, the doctors don't want to do more surgery, they don't think it will resist and only makes me better for a short period.
I hope you understand my pretty poor english!

And, a while after I did these tests, the pain in my groins and hip joint is much worse.
Thanks, Marie

Hello Marie,

Obviously it's difficult, and I'm not going to propose a cheap and nasty solution.

You have really quite mild Femoro Acetabular Impingement syndrome and very early osteoarthritis in one of the hips. I can't tell which from the X-ray as they aren't marked. Hence your radiologist had little to say.

My thoughts would be along the lines of a capsulitis, or a referred pain, to or from the mid to upper back. Perhaps the sacroiliac joint ...

Only a careful and thorough chiropractic examination of the lower back, pelvis and hip joints is going to give the answers as to whether chiropractic can contribute to your problem. I'm thinking yes, but that's speculative...

I have very specific exercises that I give to patients with hip dysplasia, one this afternoon, but they're not on the website. I'll try and get to that in the near future.

Have you seen a chiropractor? Ask first, do they have knowledge and expertise about the hip. You may struggle to find someone able to help you. Helaas we live on opposite ends of the planet!

Find a good chiropractor is perhaps your next stop.

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Interesting challenges of the day

1. Mr S is a 76 year old man with neck pain of some 9 months duration. Luckily, most of the discomfort is upper cervical which is only rarely arthritic; his lower cervical spine is a degenerative mess that I have left alone. After seven treatments his pain and stiffness is 50 percent better, and he is happy in the circumstances. He can sleep through the night now and that makes a huge difference.

2. Mr P is 32 year old man with very severe lower back pain radiating to the big toe which is 30 percent numb. He had an episode three weeks ago, took anti-inflammatories and was soon better as is typical of the medial disc herniation. But before it healed, after a trivia it came roaring back, much worse. The characteristic crossed sign was evident; sitting in a chair, straightening the right leg provoked severe left back pain and tingling in the leg. He is doing well.

3. Severe lower back pain is scary; just ask Mrs P. Just watching her get out of the car I she was in trouble; she had a slipped disc at L4 making her lean towards the opposite side; luckily she had no pain in the leg. Despite family pressure that this was far too severe for a chiropractor, she persevered. Within five days she was standing upright, and after two weeks almost pain-free. 

Despite a hectic job, she wisely took my advice and stayed home for what I call exercising bed rest.

4. Mr S has had lower back, groin and back of thigh and calf pain for fourth months.

He has a pincer deformity in the hip causing the stabs in the groin, and a degenerative facet causing the sciatica. Both are responding well to chiropractic and he is well pleased; sixty-five percent better after three treatments.

5. Mr T is a wise man; he has taken a warning TIA seriously and has lost 15 pounds, and has at least as much again to lose. A change to a low starch diet and half hour daily stroll has made the difference; but the walking is making his foot and back miserable. The expensive orthotic is hopeless; luckily his hips and back are fine, but he needs a simple heel lift; he has a short leg.

6. I too have had serious lower back issues, luckily fixed by my own chiropractor; so I too have to do my exercises, take care when lifting supers full of honey, gardening and using the chainsaw. Regaining the function of your spine is just as important as the pain.

7. My own granddaughter, only 7 is hypermobile giving her pelvic, knee and ankle issues. X-rays show a mildly dysplastic hip. Years ago we would have called it growing pains. She too regularly needs chiropractic care and luckily responds well. Increased range of motion is more difficult than too stiff in my opinion. Our care is for kids too.

8. This 65-year old lady is a serious gardener; every day she is bending, lifting and digging for 2 to 3 hours a day. It regularly catches her in the sacroiliac joint, so she has a treatment once a month that sorts it out. She does her lower back exercises faithfully.

9. This 88-year old lady is an inspiration; every day she is busy in the community. With a nasty scoliosis she manages very well with a chiropractic adjustment every six weeks and exercises faithfully done. 

10. Mr X is a 71-year old retired man who wants to continue with maintenance care every six to eight weeks; he had suffered from two years of lower back pain when he first came a few months ago. He has no discomfort now after 8 chiropractic treatments, but is aware that danger lurks.

11. Mrs C has been having severe headaches, and taking a lot of analgesics. It is a non-complicated upper cervical facet syndrome, and she is doing well.

12. Mr D is a 38-year old year man with chronic shoulder pain after a rotator cuff tear playing cricket. It responded well to treatment, but he knows he must do his exercises every day; for two years he could not sleep on that shoulder.

13. Mr D, a 71-year old man, has a severe ache in the shoulder and midback since working above his head. Trapped nerve tests are negative but he has advanced degenerative joints of Luschka; after just two treatments he is 50 percent better. Can we reach 90?

And so the day goes; chiropractors should not be treating the elderly most medical sites state but that is so much bunkum.

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