By Kati on Friday, January 11, 2002 - 06:58 pm:

Hey everybody!

Although I have only been tentatively diagnosed with HMS, I have all of the symptoms. As I'm sure you all know, it is always a challange to fall asleep at night due to the intense pain. Where ever my body comes in contact with the matress is extremely painful - especially my ankles. I am wondering if a water bed would help with the pain, as it seems to be very forgiving. I feel that this would help, but I am concerned that it would not provide enough support for my back (have already had two herniated disks at fifteen). If anyone has tried a water bed or knows someone who has, I would love to hear from you. Wouldn't it be great if there was a way of heating the water? Hmmmm...

Love to all, stay warm =)

Kati

By Ian on Friday, January 11, 2002 - 11:53 pm:

Kati, I had such a bed for a while and a good water bed does have a heat system that keeps the water warm. The water bed did provide constant pressure all over the contact area, but my preference is for a more firm mattress so I changed. Regards, Ian.

By berte on Saturday, January 12, 2002 - 09:24 am:

Hi Kati.
I have a waterbed for over ten years now.
the warmth is great for me, just like the
pressure. Sleeping in a normal bed keeps me
awake all night, due to a lot of pain.
therefor holidays are small disasters for me.
Berte.

By Kati on Sunday, January 13, 2002 - 09:10 am:

Ian and Berte, thanks for the reply. I'm new to this site (waiting for a genetisist appt. to confirm HMS/EDS) and I've been wondering if anyone is out there (on-line on this site) because I haven't seen any replys from 2002. I am going to look into getting either a water bed or an air matress that you can change the firmness/pressure of. I actually got six hours of sleep last night (I think it was the combo of the Vioxx and wonderful, warm, weather) which was great. Thanks again, keep in touch.
Kati

By Hamfist on Sunday, January 13, 2002 - 09:58 am:

Kati, As I previously stated I had a water bed and it was good but for me a more firm mattress was needed. If you are looking for a water bed you need to do some research because all are not the same, but all have the water heated. The bed I had comprised 5 individual bladders and this was to stop "wave motion" due to movement.
I hope that you get a good medical person because HMS is not well appreciated by many. Regards, Ian

By Kati on Monday, January 14, 2002 - 07:19 pm:

Thanks for the concern Ian. I am seeing a genetist in Stanford, CA this Thursday. I'll let you know how this all turns out.
Kati

By jayne c on Monday, January 21, 2002 - 11:51 am:

Hi, my name is Jayne and i too find night times a problem but i have never thought of getting a waterbed i guess that would be a good idea, i suffer from hyper lax joints although i struggle to find a doctor in England who is willing to make such a diognosis any advice?

By Ian on Monday, January 21, 2002 - 12:27 pm:

Hi Jayne,
You can have super lax joints with no problems or you can have problems with them. If you would like contact I am at mercedes_nz@yahoo.com
Ian

By Kathie on Monday, January 21, 2002 - 12:30 pm:

Have you thought of either an eggcrate mattress/overlay or a memory foam mattress/overlay? These were recommended by the physios at the HMS weekend and a lot of the HMSA members have found them very helpful. I think (if I remember correctly) one of the companies supplying the memory foam mattresses etc would let you try before you buy. I think there is more info on the HMSA website under aids and equipment.

By Gwen Nelson on Tuesday, January 22, 2002 - 06:43 pm:

I have had a waterbed for about fifteen years now and couldn't live without it. It looks more like a conventional mattress on a flat wooden base. The actual mattress has a bladder and heater inside it and reacts more like a usual bed except no pressure spots and is easier to get off and on than the water beds where the bladder is contained in a box. I find now that I am reluctanat to go away for even an overnight stay because no other bed is as kind to my joints.

By Kati on Friday, January 25, 2002 - 10:22 pm:

Hey everybody!
Thanks for all of the information on different types of beds. I went to the geneticist on Thursday and she said that although she could not make a definite diagnosis, she didn't think I had HMS because my joints do not fully dislocate and there are no signs of HMS in my family. This was quite confusing because I have so many of the other symptoms of HMS and the only symptom of OA or RA I have is the bad joint pain. She said that it could take six months or longer before they found a diagnosis that fit. I was a little frustrated at first, but realized that a diagnosis will not magically take the pain away. I plan on continuing to talk with everyone here because I can relate to all of the pain everyone is experiencing. I have been getting horrible headaches everyday now, and they seem to come with the pain. Does this happen to anyone else? I have a feeling it is brought on by the stress of the pain, but have not figured out how to control them. Any help would be wonderful.
Keep in touch.
Kati

By Ian on Saturday, January 26, 2002 - 03:15 am:

Kati

Because you do not have dislocating joints and no other family members have HMS does not mean that YOU do not have HMS.

It seems to me that your geneticist is typical of many in the medical "profession" who lack understanding of the problem.

Seek a second opinion.

Ian

By Gwen on Saturday, January 26, 2002 - 11:59 am:

Kati, I found that rheumatologists seem to have best understanding of HMS. I believe that it isn't possible to track it genetically, but could be wrong about that. I was the first person in my family to be diagnosed with it but my son is definitely highly flexible and I've noticed as he approaches puberty that he is becoming very knock-kneed and starting to go over on his ankles so am wondering if there may be a hormonal influence. My daughter is less flexible but prone to joint pains and joint trauma is slow to heal, which is more like me.
It wasn't until I was diagnosed and started asking my mother (who is 85) about our family history that I found out she can still bend over and place her hands flat on the floor. My grandmother was also fairly supple and both suffered for years with what was called 'rheumatics' in those days. Vague, non-specific joint pains. My great garndmother was in a wheel chair in her 40s with joint problems. So there is a history of joint problems in my family.
I suspect if you did a bit of asking around you may find something similar in your own family. It is often that you only see the pattern once you look for it. Good luck.

By Kati on Tuesday, January 29, 2002 - 09:55 pm:

Ian and Gwen,

Thanks for info. I went to see a pain specialist at Stanford today and was very pleased with how the appt. went. My appt. for rheumatology (which was in the end of March) has now been bumped up to two weeks from now (Yes!!!). I suspect that I will get more definte answers from the rheum. than I did from the geneticist.

Gwen~ In response to your son's pain and mobility as he reaches puberty, I too, started developing problems around the age of 13 (I am 15 now). Although I don't notice any change in pain during my monthly cycle, perhaps it is the overall change in the hormone level that affects the joints. Good luck and good health to you and your children.

Kati