By Angela on Sunday, May 06, 2001 - 08:30 am:

Hi all,

I recently found out that HMS exists, and I think I might have it.
My GP says I have instable joints because of lax ligaments and has sent me to a docter in the hospital for further examinations. I've been tested for Marfan and EDS, but I don't have that, and my dokter doesn't know any other deseases with instable joints.
the docter also says I'm overreacting, and that I have nothing/that my problems are not severe enough. But I constantly have backpains, and pain in other ligaments when I use them too much.
I don't want to go back to him, unless I'm sure I have HMS.

When I walk my right leg/hip sometimes feels like it is not good in place in his socket and it ackes a lot. And then I make some moves with my hip (which I learned myself) and then you hear a pop and it feels okay again, and I can walk further until it happens again. It doesn't look like it is out of its socket.

is this subluxation? or something else?

Sometimes it feels like there is sand between the hipsocket and the bone of my upper leg, and I often feel that in my shoulder too. It goes away after a day of rest.
Does anyone here knows what that is?

thanks for your replies.

Angela

ps. sorry if my English isn't good, I'm not English.

By Gwen on Sunday, May 06, 2001 - 05:27 pm:

Hi Angela, that certainly sounds like subluxation. The joint hadn't entirely dislocated and looks normal but you just know that it isn't right. When you jiggle and squirm the joint seems to go back into place with a pop. I get it with my sacro-iliac joint (among others) and find I can relieve the problem by sitting with my back against a firm surface and turning my pelvis until I feel the joint realign. Mine always goes out on me if I do a lot of walking, particularly doing the weekly supermarket shop, pushing a heavy trolley. I've wondered if the angle of my pelvis when I'm pushing is what causes it.

By Jayne on Sunday, December 16, 2001 - 10:33 am:

Hi Angela, I had a little smile to myself when i read your correspondance, Like you i have suffered with "unstable joints" , and have seen many doctors, the main diagnosis seemed to be along the lines that i was making my joints come out(how i did this i'm not sure), after spending 6weeks in hospital i demanded to be seen by a doctor who specialised in shoulders (which was the first joint to start subluxing), i was sent to another hospital and had 2weeks of intensive therapy both physical and mental(which the psyc said i was 'normal') i managed to go back to work for about 6months, and then the problems started all over again, i eventually pleaded with the doctors to help me and had my shoulder fused(a practice no longer carryed out for hypermobility), since my problems started in 1993, i now to date have both shoulders, both hips left knee and left ankle that all sublux, two weeks ago i went for more intensive physio on my other shoulder and for the first time ever i had my body looked at as a whole and during the week was shown how to hold my shoulders properly, this in turn helped to keep everything else in place,I.E. my shoulders were in the right place, so i didn't hold my back in a funny position so my hips were right and with a little extra help i was shown how to walk correctly, when i returned home, many of my friends said they can't believe how much better i looked, the main thing i learn't that i can pass on to you or anyone else is that an orthopedic doctor is only interested in you if they can cut you and fix you this is not what we need, posture is very important and the biggest thing of all is being believed, once a doctor or a physio believes you then you can work out a plan to help you, so keep trying and i'm sure eventually you will find someone to take you seriously as i have.
all the best Jayne
p.s.i would love to hear from anyone else who has been through a similar experience.

By Anna on Sunday, December 23, 2001 - 04:29 pm:

Hi All, I'm glad at last to be able to relate to other people who share my problem. I have suffered with subluxation since I was old enough to remember. I used to put my right arm behind my head and was unable to bring it back down on it's own. Since then other joints have started to be affected hips, ankles, elbows, wrists the list goes on. I have found that after each child(I've got three) I have gradually got worse. I have never been given an explanation by a doctor of what I suffer with, even though I have had it investigated. I've had dye injected into my shoulder and recently I had a trapped nerve released in my right elbow which for a short while relieved the pain but unfortunatly it has returned. Do any of you have periods of time when you are better than other times? My joints seem to get worse at certain times of the month, I really ache all over and especially when it is cold. I really would like to be free of it. Look forward to hearing from you.
Anna
(do you find people think you are a hypochondriac?)

By traceyt on Thursday, December 27, 2001 - 03:50 pm:

Anna I am familiar with your story. 9 years of chronic neck problems. I can be fine for a month, be in moderate to severe pain or my neck locks up completely. I am just now relating a childhood diagnoses of "loose joints" to my problems. When I tell dr's my neck bones pop out of place and do not get better until a chiropractor puts them back in, they act like I am crazy. My ribs have popped out a couple of times too. My neck is famous for going out during any holiday. Yes by christmas night I could not move my head. ( I think its coincidence) The next trip to my dr I am taking web info and saying LOOK I finally figured out what is wrong with me. I see a lot about prolotherapy being helpful. I live in Alabama now so wish me luck in finding someone who has even heard of that therapy!

By Phil on Thursday, December 27, 2001 - 04:06 pm:

Hi Anna
Welcome to the club!
Most of us on this site have probably been thought of as hypochondriacs or malingerers at some stage.
Most of us with 'hypermobility' or EDSIII, seem to experience fluctuations in the severity of our symptoms. The pain can vary from minute to minute, and certainly from day to day. We can suffer excruciating pain for lengthy periods and then go through a 'good' period when the pain level eases off. It is very difficult to understand just why this should be, as sometimes it does not appear to be related to increased exertion. I know that I will always make my pain worse after certain activities, but that cannot explain why I can sometimes feel completely fatigued by a simple physical task.
I also feel that my pain is worse when it is cold, and I think this is fairly common for many HMS, EDSIII sufferers.
The only advice I can offer is to seek the best advice possible. You must find a doctor that is knowledgable and wants to help. Too many doctors seem to know little about HMS, and unfortunately do not seem to be that keen to get too involved in obtaining the best treatment for their patients.
Where do you live? Who have you seen so far? What treatments have been suggested? What are your symptoms?
Try to get a referral to an 'expert'
Chat again if you want. Ask questions. There are some very useful people watching these boards and you may be able to obtain some help to ease your pains.
Regards, Phil.

By Hilary on Wednesday, January 02, 2002 - 04:42 pm:

Hello Everyone!
I just discovered this wonderful site and I'm hoping that someone out there can help give me a little direction, especially now that I am 4 months pregnant. I have never been diagnosed by a doctor as having HMS, but recently after doing some research on the internet I'm finally trying to put things together!

It all began a couple of years ago when I started having terrible pain in both of my shoulders. The doctor diagnosed bilateral shoulder instability. I had surgery on the left, which did relieve the severe pain, but it limited my range of motion. My right shoulder is extremely loose, but I'm putting off additional surgery as long as I can. Around the same time I realized that I my hips would sublux and had for years. I mentioned it to the Orthopedist and this is what he said "Just wait until you get pregnant, you will be a blob"! Now that I am 4 months pregnant, his words are haunting me. So I started putting all of these things together. I don't know who to see to be diagnosed, the ortho I was seeing didn't seem concerned with anything other than operating on my shoulder. I'm trying to diagnose myself which seems ridiculous, but I don't even know where to begin to find a doctor. Here's what I recently realized and what led me to looking into this further:

-Bilateral Shoulders and hips that sublux
-Neck seems to sublux, not sure how to describe it
-Dislocated rib head
-Double jointed fingers, I can't even open a jar anymore with my right hand because it is so painful
-My left toe toes feel like I am walking on the bones (this has worsened since I became pregnant)

I don't know what to think of all of this, but it seems strange that I've had all of these injuries in the last couple of years, maybe it's coincidence? I'm extremely concerned that if I am hypermobile, that I will have complications with my pregnancy. I live in the San Francisco Bay Area, if anyone knows of a specialist, please let me know.

Thanks so much for listening and letting me share
~Hilary

By Iggie on Monday, January 07, 2002 - 06:30 am:

Hi Hilary,

I have had symptoms of HMS/EDSIII since early teenage years, and was finally diagnosed by different rheumatologists with HMS, and then EDSIII which in the UK research community are recognised as the same disorder.

I obviously can't help you with the specialist as I live in England, however at 34 weeks pregnant I can tell you my experience of pregnancy and the extra care I've needed.

Firstly, there is an increased risk of premature labour and so I needed cervical scans at 20 and 23 weeks to see cervical incompetence was not an issue - it wasn't. My existing affected joints, of which there are many, became more painful from the first trimester, but it was managable, although I needed new splints for hands and had to start strapping my knees and shoulders again for alignment and pain relief.

My pelvis has become a bit of a problem (since week 9). Initially, pre-existing SI problems became worse and I wore a support belt, but by the 2nd trimester I had symphysis pubis dysfuncton and driving, swimming, standing, walking etc. became very difficult. Around 20 weeks, some ribs started become more mobile and sitting for any time was painful.

On the advice of my physio. and obstetrician, I gave up work at 30 weeks to prevent permanent joint damage, not to mention the fact I wasn't able to work properly anymore! Since then, rest has made a huge difference to my pelvis. I wear a large tubi-grip support over the pelvis and can drive, and walk, for short time periods again. My ribs and shoulders remain difficult to manage, but my knees and wrists are better than they have been for ages...bizarre!!!

Hope this has been helpful. I hope it doesn't sound too doom and gloom. I know people who have really bad pelvic problems - on crutches pre and post-natally - who don't have HMS/EDS; and also those who have developed tendonitis, strained ligaments etc. I guess my point is that although I have had more problems, it doesn't happen to all women (my affected cousin had a fantastic pregnancy), and some woman with problems are not affected - it's those damn hormones. Moreover,it has been tolerable.

Good luck,

Iggie

By Hilary on Monday, January 14, 2002 - 02:20 pm:

Hi Iggie,
Sorry for the delay!! Thank you so much for responding and sharing your experiences.

I haven't ever been formally diagnosed with HMS/EDS III, but something isn't right with all the joint problems I've had. I let my OBGYN know that I am hypermobile in my hips along with other joints and that I'm concerned it can affect my pregnancy. She didn't have much to say, she basically said they'll deal with it if I start to contract early. I asked her if she had any cases like mine before and she didn't really answer me, so I'm assuming not.

So...I don't know what to do next. I'd like the doctor to pay closer attention, to possibly prevent major complications. I've searched on the internet to try to find someone in the area that specializes in HMS, but I haven't had any luck yet. I wish I was in the UK BTW, I lived in Wales when I was younger.

Good luck with the rest of your pregnancy, I hope everything goes well here on out for you and the baby

~Hilary

By olgalucia on Monday, November 18, 2002 - 05:32 pm:

I`m glad to know people who had the same problem,of hypermobility, I´m from South America I live in a little town, and nobody here, knows something about this painful disorders, I think so, that many people believes that I´m a hipocondriac.
Sorry, because I don´t speak english very well.
I will be glad to meet people with my same sindrome.

By linmid1 on Saturday, December 07, 2002 - 08:44 am:

Hi, I'm Linda, a 37 yr old mother of three. I, after complaining of ankle and pelvic/lumbar pain was referred to a Rheumatologist, and was diagnosed as possibly having HMS. I have had unexplained aches and pains all over my body, knees that would give way when ran, going over my ankle and feeling that my skeleton was not 'held together' very well. Some days I am not too bad, others I am really stiff, tired and sore. When I was pregnant, I would describe myself as crippled. As a child my mother always called me a hypochondriac. But now hopefully I have a good reason for it all. Could anyone tell me whether or not HMS is classed as a disability?

Thanks Linda

By Trudy Whaite on Tuesday, February 18, 2003 - 05:17 pm:

Is anybody maintaining this website? I know the webmaster can't help it when an e-mail supplied is nearly 2 years old and obsolete, but it is a bit frustrating when your e-mail comes back to you.
Perhaps it might help to change the website's name: hypermobility to Marfan or Ehlers/Danlos. I would never have thought of hypermobility and got here by accident.My son too was very agile, he did judo for 3 to 4 years, as a result he died at 18 of aorta dissection

By Az on Wednesday, February 19, 2003 - 01:53 am:

Hi Trudy so sorry to hear your son died so very young. My friend was a bit luckier in that his aorta didnt tear completly until he was in his 30's and was fortuantley saved (No thanks to the emergency hospital doctors, but thats another story) I know there are many many sites on the net due to my friend and myself (I have HMS), but there is still some sites for Marfans that may be of use to you, this one (Linked here) has a support group that you may find of some use to you http://www.marfan.org/ I hope you find this post and some ease to your grief
All the best
Az

By Laurie on Monday, May 19, 2003 - 01:53 am:

Hello... I am sorry to hear of so many other troubling experiences. I wish you all many pain-free days and nights, and hope only the best for the expectant moms and their babies. It's taken many years for me to get a proper diagnosis, but so far at age 34 it's hypermobility, fibromyalgia, TMJ, scoliosis, trigger finger, and probably classic EDS. Doctors know hardly anything and tell you less; thank God for the Web. Over the years I've discovered many things about my conditions that might help some of you too. Here goes:
1. For women, the ups and downs of inflammation and pain are often tied to our cycles. Right before a period and right after, our hormones don't provide us with natural anti-inflammatory relief; I always have pain then. I've heard asthma is worse then too, though I don't have it myself.
2. For expectant mothers, pain can get better or worse... but having the wrong diagnosis can be dangerous, so get a doctor who knows hypermobility isn't benign, and who listens to you and your symptoms!!
3. Always take NSAIDs after eating first. If they bother your stomach, do not take them at all.
4. Learn more about fibromyalgia, as it can account for many of your symptoms and is now being tied to HMS and EDS.
5. Learn about your family history if you can. All I ever heard was that my relatives had arthritis, so I was put in that box for many years. As my current diagnoses disprove the old one, I've come to believe there was much more to several key relatives' health problems than arthritis. The pieces finally start to fit.
6. For jaw/neck pain, TMJ syndrome, popping, etc., try to get phys. therapy from a TMJ specialist. I got it through luck (divine intervention perhaps!) and it changed my life. A tongue thrust and swallowing problem had made my life hell at age 21, and the regular doctors had told me this: "Here is a list of chewy things you should avoid eating." Big help... not.
7. Don't have cortisone shots or surgery just because a doctor thinks you should!!! People with our conditions can be harmed further as many folks on this site have already discovered too late. These painful procedures often end up not working well. Get several informed medical opinions and learn all you can first.

Okay, that's enough big sister advice for now... good luck and God bless.

By vikris on Monday, May 19, 2003 - 08:13 am:

Hi Laurie
Could you expand a bit on the swallowing problems please? I have trouble swallowing pills, I choke on drinks very easily, and I can't swim properly because I can't keep the water out.