By Ewan on Wednesday, March 14, 2001 - 08:00 am:

Hi,

I am 22 and I don't think having read through some of the posts here that my problems are anything compared with others. I was finally diagnosed as hypermobile last week, something I knew I was for years. I have clicks in every joint in my body and recently I have had very bad TMJ in both sides of my jaw that is making eating and speaking really hard. Combined with Tinnitus (possibly caused by the jaw) I have had problems sleeping for ages and as a quick, albeit stupid, remedy I have been drinking heavily (but only to sleep). I have recently had panic attacks where I get so down I find it really hard to go on. I don't know where or what to start fixing first. Some advice would be welcome. I am also very scared about my future with this.

I am very lucky in that, touch wood, I have no joint pain. I just have audible "clicks". For those that do have pain I feel for you.

Sorry a very random post - been a bad week as my family doesn't really understand why I feel so bad.

Thanks, Ewan

By Lucy on Wednesday, March 14, 2001 - 10:20 am:

Ewan, where are you located? - you should see a doctor, preferably a prolotherapist who can help you with all of this.

I have hypermobility, and let me assure you that everything you are feeling is perfectly understandable given your circumstances. But don't be afraid. In many ways, I feel that this disorder has caused me to find out things about myself that I never knew. I'm not trying to be over "chirpy" but it is true.

I also suggest that you show your family this website - it made a great difference to my family relationships.

Let me know where you are located and I'll dig out some info for you. One other thing: alchohol dehydrates you and will make things worse if you drink too much. Have a hot bath instead - I'm no anti-drinker, but I've noticed that when I do drink at all, I get terrible leg cramps.

Take care - you are not alone, Lucy

By Mitch on Wednesday, March 14, 2001 - 10:20 am:

Hi Ewan,
Been there mate! You sound just like me!
First things first, get yourself a box of Sominex and use them instead of the drink. You know it's not helping.
Then give yerself a break :0)
It's OK to have a wallow for a while and feel sorry for yourself but not long term.
You don't say if you are working, if you are, book yourself a few days off and relax however you like to.
If you can get out of bed in the morning you're halfway there! Getting a shower, washing your hair and getting dressed, well that's three quarters!!
Just for now, set yourself a tiny goal each day that you really can cope with, (I made myself post a letter or water the houseplants or clean the bath or something) and you'll be surprised how soon you feel better. Just achieving something instead of moping around makes all the difference!
Talk to your doctor, I'm taking SSRI anti-depressants and that's OK. Get yourself referred to a physio who knows about hypermobility if you don't already have one and talk about exercises. The important thing is to build up the strength in your muscles without overdoing it.
E.mail me Ewan, if I can help you I will :0)
Mitch

By Gwen on Wednesday, March 14, 2001 - 12:19 pm:

Ewan, take notice of everything Mitch says. It makes damn good sense. A few things I'd like to add. While it is important to keep yourself active and motivated at the same time be careful not to overdo things. I spent years struggling to work, be a mother and keep an immaculate house while also battling chronic pain, sleeplessness and a sceptical medical system. I crashed bigtime and was on anti-depressants for nearly five years. It was only when I realised that I was never going to be able to do everything I felt I had to and that I had to set priorities that I was able to step back and start healing. My hypermobility problems only came on after my first pregnancy and I'd led a very active life before that so found it hard to slow down and give up certain things.
Be wary about utilising alcohol to help you sleep. As Lucy said, it will dehydrate you. It is also a central nevous system depressant and if you already feel depressed will only compound thge problem. Nothing wrong with a social drink but don't use it as medication. If you feel depressed you possibly have lots of thoughts rushing around which stop you getting off to sleep or wake you up during the night. I found using a relaxing tape very useful, either one with someone talking you through the relaxation or a New Age tape of bird song, waterfalls etc. My favourite is of a creaky old boat with the waves gently slapping against it. Regular sleep is important as chronic fatigue only compounds the problem. Can you sneak off for a siesta during the afternoon? You can also use the relaxation technique to control your panic attacks.
I agree with you about the clicks. Even though I've had mine over twenty years I still find them nauseating and get anxious that it will be more than just a click, especially with my sacro-iliac and shoulder joints which are painful. One shoulder joint did dislocate but went back while the other has had three rotator cuff injuries.
Discovering this forum has been marvellous as has the contact with other hypermobile people through our local EDS foundation. Knowing that you're not alone, not weird and not imagining what is happening to you is so important.

By Geri on Wednesday, March 14, 2001 - 02:30 pm:

Hi I'm just writing to agree with the posts above. Strengthening exercises are the best plan as long as you take it easy. I'm more in the same situation as you, with no chronic joint pain (apart from one, said earlier) just cracks, clunks etc. Take it as a good thing that you don't get pain.
I don't know if I'm correct in this but I don't think that lots of joint problems/pain are inevitable for someone with hypermobility. You just have to take more care (unlike me).
How taking about St. Johns Wort for depression rather than drinking? Also Glucosamine is said to be good for the joints.

By Bob on Wednesday, March 14, 2001 - 02:53 pm:

Ewan,
You've gotten some good advice.
Let me add a little more.
First, don't use alcohol to put yourself to sleep. It is a depressant and will cause your depression to get worse. If you can see a doc about the depression, and as mentioned the SSRI drugs are great--especially the newer ones such as Celexa.
An injury caused by my hypermobility lost me my job. And with that I came down with depression and anxiety/stress disorder.
Be really good to yourself. Try not to blame
"Yourself" for what's going on in your body. Accept that it's ok to be sick--and depression IS an illness, just as much as if you had any other debilitating illness. Be easy with yourself. Tell your self that there isn't anything that you must do. See your doctors and let them help. If you can get a good psychologist that you like, that will go a long way in helping you accept what your body is doing.
Many of us have gone through these things and are here for you.

By Barbara on Wednesday, March 14, 2001 - 06:20 pm:

How do you get off the list for HMS???

Thanks for your help..

Barbara

By Barbara on Wednesday, March 14, 2001 - 06:28 pm:

How does one get off the HMS mailing list...?? I have been trying unsuccessfully and I can't. I keep getting scads of emails that are all "returnable" and "error" and don't make sense.

Can anyone help??

By Barbara on Thursday, March 15, 2001 - 07:37 am:

Never mind...

I finally got off the list...I was even getting emails from other people who were subscribing!! What a mess!!!

Barbara

By Geri on Thursday, March 15, 2001 - 10:41 am:

As a related topic, does anyone know what % of the population is susposed to have generalised hypermobility but not necessariy EDS etc?

By Patrina on Friday, March 16, 2001 - 09:31 pm:

Dear Bob,

You've had lots of great advice already. I have panic attacks & depression, both are lousy. I don't know if I could say which is worse. Probably no such thing! But don't try to just 'suck it up' and tough them out. I tried it for at least 25 years & it was exhausting! And not worth it. I wasted some good time, refusing (to myself)to go see a doctor.

There are lots of good psychiatrists out there, and there are some really effective meds. By the way, if you're not comfortable with your shrink after a few visits (or one), find another. If your meds don't work, or if there are side effect problems, let your doctor know.

I've only changed doctors when I moved, but you get the idea. Remember that amidst all the chaos you do have control over these things (and more).

Let us know how it goes; remember you can always come here with questions or to vent. Patrina

By May on Saturday, March 17, 2001 - 06:42 am:

10-15% of the population is supposed to have a beighton score of 5 or greater, which is used to define hypermobility. Most of these people don't get any problems, the ones who do are said to have 'a hypermobility syndrome' which can be HMS or EDS or Marfans or O.I.
My personal view is that people who are 'just' hypermobile have good quality ligaments, that strech like good quality rubber and people with a hypermobility syndrome have poor quality ligaments that strech like poor quality rubber.
But again, that's my personal view. Anyone else?

By Ellena on Saturday, March 17, 2001 - 06:50 am:

Some doctors think that anxiety and hypermobility might be related as they often appear in one patient.
They say that maybe the hypermobility makes people anxious or that there is one genetic defect (I hate the expression) that acounts for the both of them.

By Karin on Saturday, March 17, 2001 - 03:03 pm:

I also feel anxiety,panic,and depression must be
related to hypermobility.Anything with a brain
no matter how small,learns very quickly to steer away from things that hurt.DANGER DANGER
When I think back there WAS a reason why no one could get me to wear certain shoes.Even as a child I would insist that I was going to break my ankle.
Of course I was called everything from stupid to stuborn. At times I feel the whole world is a danger. I don't think this is genetic I think it's a normal response that needs to be managed