By Ger on Wednesday, December 20, 2000 - 09:39 am:

Hi there, I was very interested to read one of the posts about the effect the pill can have on ligaments. I dont know if I am imagining it but I found that after a month and a 1/2 of taking it, my joints got looser. Could this be possible? Has anyone else had any similar 'strange things like this with the pill? (I stopped taking it btw, because it made me get very fat)

By Gwen on Wednesday, December 20, 2000 - 10:48 am:

I don't know that I noticed any hypermobility when I was using oral contraception. I always had sore joints and used to sprain wrists and ankles regularly as a child then things seemed to settle down somewhat during my teens and twetnires and I more or less forgot about previous problems, assuming I'd outgrown them.
My hypermobility became noticeable during my first pregnancy when, once again I began spraining my ankles. My doctor told me it was one of the side effects of the ligaments relaxing prior to the birth and that they'd all tighten up again afterwards.
I continued to sprain ankles, wrists would give way if I lifted a kettle that was too full, my knees would sublux if I was squatting and turned sideways, I had a ruptured disc as a result of what was a very minor stress, have disclocated one shoulder and damaged the rotator cuff on the other, my vertebrae pop in and out at will and I'm constantly needing to "crack" my knuckles to relieve the soreness.
I finally saw a rheumatologist (who by the greatest of good luck was Julian Kirk who first described HMS as a clinical syndrome) who said that in a minority of women their ligaments fail to contract after a pregnancy and I cam into this category. He also said that it wasn't progressive and should improve with the onset of menopause and the natural stiffening of joints due to ageing. I'm now 54 and haven't noticed that I'm stiffening any. I must say that over the last six months the pain level has dropped to a degree that it is manageable, mostly without medication and I am averaging six hours sleep which is a huge improvement on the two unbroken hours and toss and turn for the rest of the night that has been my pattern for years. I'm still holding my breath in case this is only a blip in the pattern but am certainly enjoying it while it lasts.
I do think there is a correlation between hormone levels/combinations and hypermobility. Not so much that oestrogen or relaxin cause hypermobility but that they can exacerbate its effects in women with the condition. Eppie Havel (havel@mtaonline.net) has studied this in some depth. It might pay to contact her.

By Jane on Wednesday, December 20, 2000 - 02:30 pm:

This is something I've wondered about since I've been on the pill. I began taking it 2 years ago in my second year of college, and have definitely noticed a worsening of symptoms, but this could also be due to a lifestyle change (at school I do an immense amount more walking than I have anywhere else in my life). Still -- my shoulders and hips, the big troublemakers, slip consistently all day long, and my ankles and wrists, feet and fingers have jumped on the bandwagon in a steady progression over the past two years. I'm not sure what to make of it. I was aware that certain hormones are linked to looser ligaments, but the pill is so useful in regulating a wild and painful cycle that I'm reticent to leave it without clear evidence. If anyone has info I'd also be very interested in hearing about it.

Gwen, do you know if your difficulties during and after pregnancy are common among women with HMS? As I'm beginning to enter childbearing age it's a concern of mine, and if my joints get much looser I have the feeling I'll just dissolve all over the floor one day. Thanks very much for sharing your story.

By Gwen on Wednesday, December 20, 2000 - 09:18 pm:

Unfortunately I don't know how common an increase in hypermobility during pregnancy is in HMS women. From what I was told it is something that affects all women to a greater or lesser degree during pregnancy as the effects of relaxin are systemic and not restricted just to the pelvis.
Most women fing that within 6-12 months of giving birth the ligaments will tighten up again an regain their former elasticity. Mine didn't.
In fact, if I think about it and it has just occurred to me as I'm typing, I've only had problems with joints clicking and subluxing after an injury although I have pain without injury. Not necessarily anything major but it seems that once the ligaments have stretched they don't go back to their original state of tension. Rather like a balloon that has been left inflated too long, or cheap knicker elastic that goes saggy the first time they're washed. (Doctors give very strange looks when one uses that analogy)
I realise that this hasn't really answered your question but I don't know the answer. Have you contacted Prof. Grahame? If anyone could give you an answer..............

By Sheena on Thursday, December 21, 2000 - 06:17 am:

I am wondering if Hormone Replacement Therapy (HRT) has the same side-effect. I only had back problems after starting HRT. It might be complicated for me to stop HRT, as I take it to compensate for side-effects from a high dosage of thyroxin.

Has anyone else experience of HRT?

By Johanna on Friday, December 22, 2000 - 02:36 am:

This hormone thing is puzzeling me more and more. Just heard the story of a woman who does not have HMS or EDS, and who had never had problems with local anaesthetics before, but when she was pregnant and she went to the dentist he could give her all the shots he wanted, they didn't work sufficiently. What is it with these hormones and hypermobility and hypermobility syndrome?

By Eppie on Saturday, December 23, 2000 - 08:39 am:

Ladies and women of all ages,

I'm off to the gym (pray for me that I don't injure myself :)), so I cannot write in detail right this second, but I can assure you that female hormones play an enourmous role in soft tissue deficiency/destruction. I will draft a sound piece of prose complete with references sometime in the next week, and will post it here for your review. I will also let you know what I've tried in terms of therapy, and subsequent/ongoing results. If we stick together, we WILL get answers.

Eppie

By Gwen on Saturday, December 23, 2000 - 10:20 am:

Dear Eppie, what's the difference between a woman and a lady? :-) I've spent most of my life struggling to impress on people that I'm not a lady despite a convent education. Happy Christmas!
Gwen

By Eppie on Monday, December 25, 2000 - 01:52 am:

Gwen, I'm not big on the usage of "lady/ladies" either. For me, it conjures up women in slinky evening garb presenting cheesy bid items to a crowd of verbally degrading men that should (and, even worse, do) know better. But, I've also used the term to correspond with my dearest friends..as in "how are my favorite ladies?". I've used the term in my post in this fashion; however,I must say that I prefer "women", which denotes strength, intelligence, and integrity...alot of which I see here on this life-saving board!

Loved your Christmas card...once again you gave me a case of the giggles! We do a New Year's mailing, so keep your eye on the post box. Merry Christmas to all! Eppie

By Gwen on Monday, December 25, 2000 - 09:05 pm:

Eppie, you're a girl after my own heart. A convent school education unsuccessfully attempted to make me into a lady in the sense of submissive, genteel and docile. Boy did they ever bomb out! Look forward to the New Year mail with great anticipation.
Season's Greetings and happy solstice!

By Lin on Tuesday, December 26, 2000 - 11:54 am:

I am far from being a lady, and have always been that way. probably because my mother tried to force me into being a lady... she is a lady, and liked the frilly dresses and things when i was younger... and pink... now, i am 15, i HATE the colour pink, and i hate dresses. I am very much a tom boy, not a lady. I like t-shirts, sweatshirts, and jeans. i will dress up for special occaisons, but i am not a lady. I was actualy put on doctors orders to stop beating up my last boyfriend, he liked to tease me and we horsed around alot, and with my hypermobility i would hurt myself. i always won of course, so he enjoyed the doctors orders =)

By Pami on Thursday, December 28, 2000 - 12:12 am:

Well, I must say, I have been and probably always will be a "lady". When I was just a baby, people always commented on what a little lady I was. My wrists would always be very feminine, and I carry myself like a dancer...because of my EDS. To me, I actually prefer being called a lady because woman, well, let's just say that the guys at my school use the word woman negatively. "Hey WOMAN, get your butt over here!" A lady makes me think of grace and carriage. To me, being a lady doesn't mean frills and pink and lace, it means someone men respect and look up to!
But, I can totally see your side of the coin! I'm not trying to start a fight!
-Pami
PS I'm 18, and have type three EDS

By Lin on Thursday, December 28, 2000 - 07:16 pm:

i have EDS III and HMS also. i am built like a lady, thin with long arms and legs, wide shoulders and hips, tiny waist, long neck with head carried well, but i dont act like a lady, and probably never will lol. oh well, guess thats too bad, i am my mothers only daughter. she tried to live her life through me, and now me and her do NOT get along very well.....
Lin

By Geri on Friday, December 29, 2000 - 09:46 am:

I also find that I carry myself like a dancer (or a lady even!), and because of the things I can do, people always assume I am even when I've had no training whatsoever. Thinking about it, I'd imagine that most people with hypermobility have good posture because if you didn't hold yourself up properly your back would just flop (forwards or backwards). I've tried standing up and relaxing all my back muscles and my head ends up by my lower legs.

Oh I just thought of something on the dance subject - has anyone here tried ballet (past or present)? because I think that the turnout or feet is really dangerous for the knees, but many people seem to think that its a good corrective measure for hypermobility . . .
Happy new year to all

By Lin on Friday, December 29, 2000 - 02:42 pm:

i took ballet for 5 years when i was little, i was quite a little dancer, but would have been better in gymnastics still........... yes, many of the positions and movements are hard on the knees, i have bad knees now, i wonder if any of that is related to all the stretches and exercises......
Lin

By Sheena on Friday, December 29, 2000 - 04:26 pm:

I did ballet for 6 years when I was a child, and went to a class a few times when I was an adult. I was OK in my class, not a star, but I enjoyed it. I was always told (by other instructors) that I had a good carriage - ie I walked well, which I put down to the ballet training.

In one class the teacher was lazy, because of the way the room was laid out, and worked our left foot much more than the right foot. Now my left side is looser than the right, more hypermobile, and I will never know if that is natural or whether it has anything to do with the amount of work I did with it in that class.

As for the turnout, now that some of my joints seem to be getting looser, the turned out position seems to stablise my hips - is this a known fact, or am I just imagining it?

I think ballet is good training for your feet, ankles and knees, as your are always told to keep them lined up and not twist them.

By Elle Elàn on Monday, January 01, 2001 - 06:15 am:

BE CAREFULL!
Even though you can watchout for your self at the barre and floor exercices in regard of turnout and overstretching, you also have to make turns and pirouettes THEY are most dangerous for spraining ankles and knees It doesn't take much for our lower legparts to turn less fast then the upperlegparts! So those joints get twisted VERY easily! Watch out ladies,sorry , Women!

By Lucy on Tuesday, January 02, 2001 - 09:18 am:

hello!

I am a lady, used to do ballet and gymnastics! The only thing good for EDS type three out of these is to remain being a lady!

Seriously - DON'T do ballet or gymnastics - if I hadn't I think I would have prevented most of the problems that I have now.

In order to retain our dancer like qualities try Pilates.

Hugs and good wishes to all you ladies and women out there.

Lucy

By Johanna on Friday, January 12, 2001 - 10:05 am:

Does the pill makes hypermobility worse? I don't know. I do know that the last 3 months I have become a lot worse, that is, my pain and hypermobility have. When i started to think about it I realised that about 4 months ago I changed pill because of severe bleeding (all month), this new pill hasn't changed much, so perhaps i should change back and see if my hypermobility and pain will lessen again... Any experiences on the board?

By Geri on Friday, January 12, 2001 - 12:01 pm:

This is the thing I'm still wondering about too. What pill did you take? because I took Dianette and I'm sure that the time I took it has had a direct effect on my joints (which have always been hypermobile but not to this level which its at now. But then again I'm wondering how that could possibly be, as I only took it for around two months . . . .

By Johanna on Saturday, January 13, 2001 - 08:08 am:

When I was 15 years old I had very severe bleedings so I started to take microgynon 30 which caused me to be an emotional mess every 21 days, taking this one my hypermobility became worse but not too much, after 2 years I changed to trigynon, and I took progynova (meant for women in their menopauze) the week I didn't take trigynon to stop the emotional changes. The same story, my hypermobility got worse but not too much. Then about a year ago I stoped taking progynova as my mother suggested that my hypermobility could have something to do with me taking progynova. There were no changes, still my hypermobility kept getting worse. Then 4 months ago I changed to ministat (for reasons stated above) and ever since it has been going down hill very fast. I must add that I have gone through some other changes too the past few months, so it is not necessarily the different pill that causes this increase of problems, but it could be.

By az on Monday, December 30, 2002 - 12:53 am:

Over the last four years I have noticed increased pain with my HMS during the time of menustrating, is there a reason for this, or am I just unlucky?
Answer: Rheumatologist's Comments:

This is not at all uncommon, but we really don’t know the precise reason for this. Obviously, female hormones are involved but why this should affect pain is a bit of a mystery.

Physiotherapist's Comments:

It is quite common for joint and muscle pains to be worse just before a period. The hormone levels change and this can influence many things, including joint laxity.

Hi I asked this question on the HMS.org board and this was my answer. I have tried many types of contraceptive pills and each has made my HMS worse, but worse was to come using the contraceptive injection Deproprevera, besides having worse HMS problems it turned me into physcho bint from hell (A common side effect ) Also 7 years ago I was pregnant, but didnt know until I lost it (All tests where negative and I didnt show) Since the pregnancy one of my hips has remained looser than normal due to the release of hormones all females have in the first trimester. gawd knows what I would be like if I had got to 9 months and had a second release of this hormone to prepare for the birth. One thing I have found that helps slightly is taking the supplements Evening primrose and B12. If you are wanting to start a family sometime in the future you will need to see a gynacologist first to discuss problems with HMS, been pregnant and possible problems after.
Az

By Sheena on Tuesday, December 09, 2003 - 04:46 am:

I hsve hypermobility. Loads of gymnastics when at school. First thing I noticed when pregnant was loosening around pelvis. More recently fell and damaaged coccyx and ended with right SI joint out. The chiroproctor noticed the hypermobility as he did one correction that left me in agony as he'd 'forgotten' and it was inflamed for somedays after. Pilates is very good. Recently have a new teacher who took one look and identified my hypermobility before I moved! The stance was a real giveaway!