Those With Eds And Pots

[Maxine]

For a while I have had some pretty bad pain---(more then my usual), in my mid spine. From time to time I notice the pain spreading to my sternum, and upper rib area. Yesterday and today the pain is keeping me down on the couch.

I went shopping with my husband Sunday, and I thought I was going to collapse from the pain. Just sitting up is painful. Thankfully my husband is there to drop me off at the door, and to help me if I can't make it. I can generally hit a couple stores if I'm doing OK. I thought the pain would pass, as I have had this beofore, and just blamed it on the desiccated disk on my T-8-9. By the end up Sunday, I was feeling horrible. Not able do do much of anything right now.

When I sit up I can hear cracking and popping in my chest, ribs, and spine. My upper spine feels like a giant tooth ache---but in my spine.

Not a good thing to be happening beofore the tooth extraction--------------my lower right molar needs to go. an infection is starting in the root. Tomorrow I see the oral surgeon. No more playing around, we just gotta get it done.

POTS has been worse also with the low BPs and fatigue. Today I stood in the shower and felt the blood dump fast, so I got down on my knees and washed my hair. I take a bath at night when my husband is there, freshen up, and wash my hair in the morning. Why can't I have a good spell to make this tooth extraction easier----

A not so happy ..

Maxine :0(

[flop]

Hi, sorry you're feeling bad right now.

I usually find that having any sort of infection makes my POTS symptoms worse, so the flare you're having could be related to the tooth infection - hopefully getting the tooth removed will sort the infection and then your body can recover back to baseline?

Best wishes,

Flop

[persephone]

I get trouble with my sternum. I used to notice my chest 'popping' if I had a really bad faint, and other people could hear it too. Now I'm much better I don't find that happens anymore. I do still get sternum pain though. On days like that, a hot bath or shower helps me a bit, on top of the usual analgesia.

My rheumatologist who specialises in EDS said that it's common in EDS to experience sternum pain that's so bad it can be mistaken for angina

[sally]

Yes,

my oldest who has EDS, has this type of pain. She cannot lay on one side of her body when sleeping because this pain will wake her up and then go away once she repositions herself.

[juliegee]

Hmmmm. Interesting thread. My son has had a serious playground injury to his sternum, causing it to loudly "pop" several years ago. He tried to do a back flip on hanging rings. He ended up in the ER and he was on codeine for a few days. I've always wondered about an atypical category of EDS for members of my family. Mack, my son, has been evaluated for EDS by Dr. Rowe at Hopkins. He had some characteristics, but not enough for a DX. Two of my brothers have experienced sudden unexplained aneurysms too, one in his aorta, one in his brain- both very fortunately survived.

I, too have experienced horrible sternum, rib, chest pain and was DXed with costochondritis. It was a relief to know I wasn't having a heart attack. You might want to check that out. Feel better.

Julie

[Maxine]

Thanks for your replies---

Of course I will get it checked out if it gets worse. It hurts when I try to sit up straight, bend, use my arm, and move certain ways. Today it's a little better, but not much. My EDS doctor told me this can happen with EDS patients.

I told him I had to lay on my front for ultra sound, and it happened then, but not as bad as this time. This hurts from back to front. I'm not sure if the problems I have with T-8 and 9 are causing it, or it's a separate issue. there is popping in my sternum area, and upper ribs.

I saw an oral surgeon today, and I was surprised on what he knew about EDS. He didn't know what is was when I first saw him. After I saw him, he must have read all the literature I gave him on EDS, POTS, and Chiari related conditions. I told him that the dentist I saw said my molar root has an infection, and he was concerned it was getting into my neck. The oral surgeon said my neck pain is probably from the instability caused from the EDS, and then said my body will hurt all over the place.

He said if the infection was significant, I would have swelling, pain, abcess ect. He wants to pull it in a hospital, because he wants me put out, as the carbocaine will not numb it completely because there is a cavity. I told him I thought it was an infection, and he said a cavity IS an infection. He said local anesthetic doesn't work completely on a tooth extraction with a cavity. He wants me to see an allergist to see if I'm allergic to local anesthetics from this group, as I had a really bad reaction to lidocaine in 2005, but too much may have been used---(it was a non-dental procedure). There were a lot of injections, and they were injected too close together-----and this can cause a toxic reaction.

They want to put me in a neck brace to protect my neck because of my cervical/cranial instability, and the force needed to pull the tooth. That is another reason they don't want me awake, so I don't move me neck suddenly if I feel too much pain.

Gee----all of this from EDS, and then you have the POTS, and the fun reactions to different medications.

The insurance is dragging their feet regarding the hospital portion, so they are going to put this through once again. They needs codes from anesthesiologist, and ER suite the oral surgeon will need to use. He said if I have significant pain or swelling, they will put me on an antibiotic until we can get this thing taken care of.

I never realized EDS could wreak such havoc on one's body. My body---especially my upper is exceptionally unstable. I can't sleep on my side either. If I try, my shoulders suffer the consequences, as well as my neck and upper spine. I'm not even going to tell you what happens to the rest of my body. The worst of it is my spine.

Maxine :0)

[Sushi]

Maxine,

I'm pretty sure I have EDs, though mild. I have most of the markers and have always had a pop in my sternum when I bent backwards. I had a bunch of doctors listen to it, and guess what? They weren't interested. I'm lucky though, there isn't really pain but a feeling of tightness, or of something being caught, and it is relieved by popping myself.

Though I'm pretty sure that I have mild Eds, and my dys comes from that, I don't feel like investigating it and jumping through all those hoops. I do find that pilates stabilizes my joints a lot--probably from strengthening alignment and building muscles where they count.

[Maxine]

Thanks Sushi,

I have always been an active person, ----------dancing, walking several miles, exercise bike ect. Even when I had the tachycardia problems in the 80s and 90s. I was on a beta blocker, and this helped my body to still tolerate exercise.

I still keep moving, but cant do the exercises I used to do, and avoid any reckless movements. Staying on the couch isn't for me. I try to do a lot of the housework myself. Vaccuming is out, but there are other things I can do that won't hurt me if I'm careful. Of course I have the fatigue, and other POTs symptoms, and a number of other neurological symptoms, so I have to work with my body, and not over do things.

This is how I end up with pains like I have in my sternum. The pain has gotten better from taking it easy, and watching my body mechanics.

I was in physical therapy a couple months ago, and it felt good. Then I got a bad virus, and it took almost two months to completely go away. I want to go back, but not until I get the tooth extraction behind me.

I just couldn't believe how much pain I was in------when your sternum hurts, you can't move without causing more pain.

Maxine :0)