Eds/tmj

General
1

Hi,

I have some symptoms of EDS but no hypermobile joints

Any info would be appreciated on mild symptoms.

The fact sheets I have read in the past sent by helpful members don't seem to indicate I have EDS.

I am a little confused about the EDS thing.

So many people have asked me if I have it and tell me some of my symptoms sound like it.

I cannot get even get a Dr to discuss these things with me because I heal very well, am not hyper mobile.

I do have: TMJ, IBS, Fibromyalgia, Migraines, Silent reflux (but I need to lose some weight and not sure if that is why I have reflux), Fatigue, Osteoarthritis in my 2 big toe joints that wore away the cartilage ( but my Mom has the same thing and I have had a bone scan and have a small amount of OA in my lower back in one disc and that's it) and this weird neck- ear- jaw- pain that wont' go away and from which I get relief from taking two regular strength Tylenol but I would have to take them every day to feel relief.

I also have a constant runny nose and sinus pressure and no one knows why and cold chills 3-4 times per week as well as some hair loss on my temples and Raynaud's type symptoms from ice cubes and cold water or sticking my hand in the freezer to get food out. Yikes that hurts!

I realize these could be from many different things and some I may just have to live with as strange ole me.

But, people keep asking me about EDS and dysautonomia and I get weird looks from Drs when I ask about those things and they just say No, you don't have that.

Even if I did have something else: would/could anything be done about it since the symptoms are so mild?

2

You may also wish to join our EDS community, Ophelia: http://www.ehlersdanlossyndromesupport.org/

3

Thank you Emmaline and dancermom!

I dunno if I can see a geneticist without a DRs. referral but I will ask my PCP on Tues.

I happen to have an appt with her on March 4th.

:-)

4

I heel well, do not have the doughy skin, and am missing out on a few of the other major symptoms, but I have EDS. I can’t remember if I’ve already talked with you about the Brighton test…? All of the symptoms you mentioned are included In EDS symptoms- but that doesn’t mean you have EDS. Did your NS “rate you” for hypermobility? Have you tested yourself?

5

Thanks jcdemar and Sydney!

I did do the Brighton test and don't have any hypermobility.

I just don't know anymore.

I couldn't go to the Dr's my car died.

But it's fixed now and appt is tmrw.

I have so much to ask about that sometimes only the first few issues I mention get addressed.

I have fibromyalgia and I don't sleep well, I have IBS, Irritable Bladder, Silent Reflux, TMJ, neck pain on the left, headaches in my temples, migraines and depression. So...so many problems to address and the EDS just gets dismissed cuz of lack of hypermobility.

I am just down a bit today...sorry.

Too many days alone inside.

I am still experiencing extreme fatigue and maybe some SAD from all the darkness in Pittsburgh.

Thanks for your replies!

:-)

6

Ophelia, so sorry you are having some blue days. I think a lot of us experience some depression after surgery. I certainly did- locked up in my dirty house, alone, and watching the same commercials over and over, and still not feeling well- recipe for depression!! Btw I’m sorry you are still having symptoms but I think you need more time yet to heal. Something that helped to lift my spirits was watching the The Secret. I get that this will not be everyone’s cup of tea, but it helped my outlook a great deal and having a positive outlook can directly affect how you are physically feeling.

Jenn

7


Hi Jenn!

Yes, I do need more time.

I had my Drs appt and she said I had fluid in my ears from the intubation during surgery and possibly a fractured TMJ.

I had TMJD before surgery so...maybe that is why I was susceptible. Dunno yet til I get x-rays etc...

I got some steroids for it. She said it will get rid of the fluid or inflammation what have you and I will feel better.

I am also being tested for autoimmune stuff since I have hair loss and fibro and this really bad fatigue etc...

I have a host of symptoms that seem to wax and wane I guess they are called flares and they get me down.

My Mom bought me The Secret a few years back!

I love it!

Great idea to pop it in and turn this "funk" around.

I always tell my bf that is how I "got" him.

I did too. I made a board and put stuff on it and asked for the right person to come to me.

Then joined eHarmony to put it into action.

:-)

I got to leave my house yesterday and today and drive around.

The sun came out today and I feel much better.

I also got some Elavil for my fibro and to sleep.

I get that SAD sometimes when it's gray for long periods.

Thanks so much for your reply!

It means the world to me and I greatly appreciate you!

Thanks again!

Deetzah

jcdemar said:

Ophelia, so sorry you are having some blue days. I think a lot of us experience some depression after surgery. I certainly did- locked up in my dirty house, alone, and watching the same commercials over and over, and still not feeling well- recipe for depression!! Btw I'm sorry you are still having symptoms but I think you need more time yet to heal. Something that helped to lift my spirits was watching the The Secret. I get that this will not be everyone's cup of tea, but it helped my outlook a great deal and having a positive outlook can directly affect how you are physically feeling.

Jenn
8

You are awesome!! So glad you are getting the other stuff checked out.