Issues relating to disorders which are related to, or which may occur as a consequence of HMS. Including but not limited to: Ehlers-Danlos Syndrome, Marfans, Osteogenesis Imperfecta, Sticklers Syndrome, arthritis, depression, chronic fatigue syndrome. To include everyday problems such as IBS, eyes, teeth, etc.....
Moderators: gila, Blaadyblah, Rosie, Retro
by DeeMc » Mon Mar 07, 2011 11:08 pm
@Spireite that's very interesting! I've been working with my chiropractor on trying to loosen up my really tight neck and shoulder muscles and had quite a lot of success with that, but I've wondered whether the neck exercises have been stirring up the pain in my TMJ.
Like Persephone, I often wake up feeling that my teeth aren't quite meeting properly. One side at the back bites together, but the other doesn't touch until I wiggle my jaw about from side to side and manage to fix it, though then I feel like my bottom jaw is kind of sideways. The main problem I have now is that it seems to slip out of place again sometimes when I eating and if I'm not careful I bite my cheek. It also affects my speech so that I don't feel like I can get words out properly. I'm really hanging out for the specialist appointment to see what can be done about it. My dentists intimated it might include some kind of mouthguard to wear at night. Has anyone had any success with that?
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by christianne » Mon Mar 07, 2011 11:28 pm
Hi Yes I have had success with a mouthguard. It was a simple one made by my dentist for 20 quid.I didn't know that I was clenching my teeth in my sleep and the mouthguard prevented me doing so (It takes a little time to get used to wearing it though!) and that improved the TMJ a lot,
Christianne.
Aged 47, dx EDS 3,POTS, Coeliac, breast cancer 2002. I have 4 children: son 14 - HEDS & Coeliac, daughter 25 - HEDS, POTS, pernicious anaemia, daughter 27 - HEDS, Behcets syndrome, also daughter 22 & 3 grandchildren unaffected as yet.
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by DeeMc » Tue Mar 08, 2011 6:59 pm
Thanks Christianne! I'll be interested to see what the verdict is when I eventually get an appointment, Dee
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by loosebones » Fri Aug 12, 2011 12:03 pm
I've just got back from the dentist where I had to have a filling without local anaesthetic as it doesn't work. While doing the filling (on the far back upper right side) she noticed that the same tooth is sticking out sideways and causing my gum to ulcerate. She wants me to come back in 3 months to discuss having it removed but I'm concerned that I will end up being referred to have it removed under general. My last tooth experience under general was not an experience I will forget and I'm already getting anxious about it. Any ideas?
"Just when I got my head together, my body fell apart".
"I think I have a problem with my joints..."
The heaviest thing I can carry is a grudge.
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loosebones
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by DeeMc » Sat Aug 13, 2011 10:59 pm
Sorry no, but I can understand your anxiety.
I ended up getting a specialist appointment for my TMJ pain. He gave me an exercise where I open my jaw slightly then put my fist under my chin and try to push down hard while resisting with my fist. It's to strengthen up the muscles. He also told me I should try at all times to eat evenly on both sides (when I know I go for long periods only eating on one side or the other because my gums get sore), and that the only time your teeth should touch together is when eating and then only momentarily. I realised that I had got so confused with my jaw not meeting up properly I didn't even know what position my mouth should be in and I was constantly tapping my teeth together trying to align it. With the exercise and consciously not closing my teeth up I have found a big improvement.
I had to have a tiny filling on 1 tooth though and the dentist couldn't find a bite block so I had to have it without. The pain in my TMJ trying to keep my mouth open was unbearable. I had to keep stopping him, but he couldn't seem to understand that once the pain starts no amount of little rests is going to make any difference. As soon as I open my mouth again the pain starts again. If I need another filling I will put my foot down and insist that he get a bite block from somewhere before I agree to the appointment. I always had one with my dentist when I lived in Australia and it made a HUGE difference to the length of time I could keep my mouth open.
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by RainDog » Wed Sep 07, 2011 11:00 am
Hi
Does anyone have any official info I can give to my dentist about the effects, or not, of local anaesthetic that is specific to HMS rather than EDS.
I have to go back for a filling next month and don’t know if I respond to local anaesthetic or not as I have not had any dental treatment since I developed HMS.
I’ve told him about my HMS and that there might be a problem with me responding to local anaesthetic. I told him that when I go back for the filling he can carry on as normal and I’ll soon let him know if it’s not working! But after reading this thread I’m now a bit more concerned, re. people passing out and reacting badly to the adrenaline in the anaesthetic.
He looked up something on Wikipedia but didn’t seem concerned as I don’t have EDS. So hence I could do with some info specific to HMS. (I also have fibromyalgia)
Any help/info will be much appreciated.
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by Rosie » Wed Sep 07, 2011 12:44 pm
Hi Raindog
If you google 'Hypermobility Syndrome local anaesthetic' you will find some articles like
this one that may help.
Rosie
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
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by RainDog » Wed Sep 07, 2011 2:17 pm
Thanks Rosie
I will print it off and take it with me.
Hopefully I'll be ok as it's only a small filling!
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by Rosie » Thu Sep 08, 2011 1:00 pm
Hi again
Forgot to say, if you hadn't had problems with local not working before, it is unlikely to suddenly develop. Your diagnosis of HMS is just a label that describe the symptoms you already have.
Rosie
Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
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by RainDog » Thu Sep 08, 2011 2:22 pm
Yes I'm hoping this is the case.
It was just that I haven't had a local anaesthetic since my early 20s, before I developed the symptoms of HMS, when I had my wisdom teeth removed because of over crowding - another common problem it seems with HMS'ers!
Will let you know if I have any probs.
Fingers crosses

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by southernjem » Sun Oct 16, 2011 8:50 pm
We had no idea that my husband's immunity to local anaesthetic was a common side-effect of his HMS! Earlier this year we had to get an emergency benefit to help pay for him to get knocked out so he could have a tooth removed. It makes dental work a lot more expensive but after years of going to the dentist and thinking, "oh, so that's why they call it the murderhouse," he adores the oblivion.
~ Janelle ~
~ Here on behalf of my HMS husband, Stuart <3 ~
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by trekster » Wed Dec 14, 2011 4:57 am
Anyone got any idea how long a periodontal referral takes? Since September ive been waiting to be seen again by the team.
Alexis
Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.
HMS diagnosis 27/9/11
Feel free to PM me about adult autism social groups in the Bristol and Bath area.
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trekster
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by Stone » Sat Dec 17, 2011 2:16 pm
southernjem wrote:We had no idea that my husband's immunity to local anaesthetic was a common side-effect of his HMS! Earlier this year we had to get an emergency benefit to help pay for him to get knocked out so he could have a tooth removed. It makes dental work a lot more expensive but after years of going to the dentist and thinking, "oh, so that's why they call it the murderhouse," he adores the oblivion.
You can usually get one type of local to work even if others don't. Some of it seems to be down to how the anaesthetic is absorbed and spreads through the tissue planes abnormally - which is why an anesthetic injection on us can make the wrong bit go numb! Even though I've had horrible experiences with lignocaine not working (paramedics use it with adrenalin which helps it work faster in normal patients - for me the extra adrenaline kicked in with no pain relief at all so I had to sit and quiver while they stitched my face up

) it worked fine when used for an ultrasound-guided nerve block before one of my hand operations. Being able to see exactly where the needle was using the ultrasound machine allowed the anaesthetist to flood the area around the nerve cluster at the top of my arm - he used a little more than normal but it was still numb when I was discharged late the next day

So long as they're prepared to try different anaesthetics (one of lignocaine, benzocaine and novocaine will usually work ok) and they believe you when you say it still hurts then you should be fine

Stone
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by DeeMc » Sat Dec 17, 2011 5:27 pm
I'm having a wisdom tooth removed on Thursday (yes, 3 days before Christmas!!) and I'm having 'sleep therapy'. It's costing £250 for the one tooth, but as well as local anaesthetic sometimes not working on me, I have extreme difficulty holding my mouth open. The pain in my jaw becomes unbearable very quickly. My daughter had 2 wisdom teeth out in Australia with 'sleep therapy' and it was brilliant. It's not a general anaesthetic, but you don't know anything that's going on, so I think it should do the trick. Fingers crossed!
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by trekster » Sun Dec 18, 2011 2:03 am
Since the beginning of September i have been waiting for the periodontal team to get me an appointment. Should i chase it up?
Alexis
Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.
HMS diagnosis 27/9/11
Feel free to PM me about adult autism social groups in the Bristol and Bath area.
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