Osteogenesis Imperfecta Support Group
Osteogenesis imperfecta is a group of genetic bone disorders. It is one of the brittle bone diseases. People with OI either have less collagen than normal or the quality is poorer than normal. As collagen is an important protein in bone structure this impairment causes those with the condition to have weak or fragile bones.
Sorry if this posts twice! It didn't show up so I am posting it again.
Okay I've typed this a lot in a lot of groups and have yet to find anyone that can relate to me and I'm praying I don't run into another wall here. So here goes...
Okay about a year ago I started having sudden severe sharp pain that started in my neck. It felt like I was pulling something or straining something. Well it did this in several places for about 2 weeks and then it started to leave my neck but move down into my upper back or "thoracic spine" as I'm told it's actually called.
So I had a pain that felt like a muscle pulling or straining at times or perhaps it was more like someone stabbing me in the back with a knife, it really was THAT agonizing. I'd go to move and suddenly stop because it would feel like that.
Eventually this pain started to go into my chest as well but seeming to come from my thoracic.
Then it went from just a stabbing pain that felt like a knife suddenly ripping through my thoracic into my chest, to having that occasionally AND having a burning pain across the upper back.
I had X-rays that "suggests" I have osteopenia. I'm 28 years young.
I had an MRI of my thoracic spine a few days ago and this morning I was told it came back normal. BUT that I have a very low vitamin D level so they prescribed me 50,000 units of it to take once a week. I am as of yesterday but they said the same thing about 8 months ago and I took it then too for a couple months and it improved my mood and gave me some energy but that was it. It didn't help the pain.
Now I'm hoping that they give me a bone density scan. I've mentioned it to my primary doctor and she said "We'll look at the MRI and then we'll see." ........"WE'LL SEE" I'm in AGONY so much of the time and I just want to know what's going on! Emergency rooms can't do anything. The neurologist they had me see in case it was something she could help me with.
I'm so scared! I haven't met ANYONE that has said they feel this!
Anyone feel this????
Like a severe pain in the thoracic (upper back) that goes through to the chest and sometimes feels like a burning and sometimes feels like it's going to break in half or a piece of your disc is going to break off somewhere????
If you or anyone you know has had this, I'm terrified and desperate! Please tell me!!!!
Also, is it possible for a disc in the thoracic spine to break just over nothing but bending or stress and kill you??
I'm taking Tramadol HCL 50MG every 6 hours as needed.
I'm also taking Tizanidine 2mg tabs every 8 hours, but I only take a half for now because she said it's so strong and I have a 6 year old and a 2 year old. I fear maybe having my daughter might have ruined my calcium or something.
I'm also taking the vitamin D I said before.
Help! :'( ...........Please!!!
Carmen
Okay I've typed this a lot in a lot of groups and have yet to find anyone that can relate to me and I'm praying I don't run into another wall here. So here goes...
Okay about a year ago I started having sudden severe sharp pain that started in my neck. It felt like I was pulling something or straining something. Well it did this in several places for about 2 weeks and then it started to leave my neck but move down into my upper back or "thoracic spine" as I'm told it's actually called.
So I had a pain that felt like a muscle pulling or straining at times or perhaps it was more like someone stabbing me in the back with a knife, it really was THAT agonizing. I'd go to move and suddenly stop because it would feel like that.
Eventually this pain started to go into my chest as well but seeming to come from my thoracic.
Then it went from just a stabbing pain that felt like a knife suddenly ripping through my thoracic into my chest, to having that occasionally AND having a burning pain across the upper back.
I had X-rays that "suggests" I have osteopenia. I'm 28 years young.
I had an MRI of my thoracic spine a few days ago and this morning I was told it came back normal. BUT that I have a very low vitamin D level so they prescribed me 50,000 units of it to take once a week. I am as of yesterday but they said the same thing about 8 months ago and I took it then too for a couple months and it improved my mood and gave me some energy but that was it. It didn't help the pain.
Now I'm hoping that they give me a bone density scan. I've mentioned it to my primary doctor and she said "We'll look at the MRI and then we'll see." ........"WE'LL SEE" I'm in AGONY so much of the time and I just want to know what's going on! Emergency rooms can't do anything. The neurologist they had me see in case it was something she could help me with.
I'm so scared! I haven't met ANYONE that has said they feel this!
Anyone feel this????
Like a severe pain in the thoracic (upper back) that goes through to the chest and sometimes feels like a burning and sometimes feels like it's going to break in half or a piece of your disc is going to break off somewhere????
If you or anyone you know has had this, I'm terrified and desperate! Please tell me!!!!
Also, is it possible for a disc in the thoracic spine to break just over nothing but bending or stress and kill you??
I'm taking Tramadol HCL 50MG every 6 hours as needed.
I'm also taking Tizanidine 2mg tabs every 8 hours, but I only take a half for now because she said it's so strong and I have a 6 year old and a 2 year old. I fear maybe having my daughter might have ruined my calcium or something.
I'm also taking the vitamin D I said before.
Help! :'( ...........Please!!!
Carmen
Are you under the care of a Pain Management Physician. NOT a general Physician and usually NOT an orthopedic Dr. but youre ORTHOU should be able refer you. Normally they are pain specialists that are also Anesthesiologists.
I went through a series of spinal fractures about 10 years ago, called "compression fractures" essentially hairline fractures in your spine that can become crippling in their pain levels.
I recognize your description of pain, and the vitamin D is a great start, but that's all it is, a start. PLEASE remember that although its healthcare YOU ARE THE CUSTOMER. if youre not happy look for another Dr.
That being said, I have an AMAZING general Phys who has gone WAY out of his way to help me. BUT he has a HUGE interest in research and this is a fascinating subject for him.
Im not a Dr and don't play on on TV, but here's my regimne (I am a 50yo male)
I too take the same vitamin D, I also take calcium supplements, I am taking a bi annual injectable called Pro lia that has helped n many WOMEN with osteoporosis related spinal issues. Something available to me, that's probably NOT available to you, BUT there should be an alternative. I am using a Testosterone Gel to increase my T levels, as it has been found that in men with HIGH T levels there is a bone thicknessing that can be found. So were not looking for the actual effects but the SIDE effects. Like I said there should be a comparable for women.
I spent last year with at LEAST one or MORE ribs fractured all year long.
I was bad, I dropped off my regimen, because I couldn't handle the weight gain.
January I went back to my DR and begged him to renew all my scripts and dince Jan have had 1 fractured rib.
I know this isn't exactly the same, but this is a life long whole body solution that you want to look at.