HRH Princess Deb
New member
Hello all,
I'm having a bad day today dealing with 'all this' so I figured I'd come here and spill it all (that's your warning that it's going to be long!) and see if anyone had any insight along the way.
I have always had headaches, cluster headaches, migraines. I've never been seen by anyone for them. I thought a lot of them were due to my wisdom teeth being impacted but nothing has changed in the almost-year since having them removed. I've had issues with pain in the left side of my neck for a long time as well.
In 2003, at 19, I became pregnant. At 11 weeks along I started having shooting pain in my left buttock. My OBGYN said it was 'just sciatica' and to stay off of my feet. At about 22 weeks along I quit my job because I just couldn't work anymore. I had a lot of problems with restless legs and cramps while pregnant, which is normal - except that they've never gone away, and neither has the pain in my butt. The motion sickness that didn't really bother me unless I sat in the back of a car started to bother me a lot more and now I get nauseous if I sit in a rocking chair or watch my son ride a merry-go-round. The bed also spins a lot more than it used to (and it never did before! I also do not drink alcohol of any kind ever). When I had a spinal for my c-section (failed induction) I was not breathing. I wasn't having trouble breathing, I just...wasn't, unless I consciously thought about it. (That has stayed with me - any time I am sedated by sedating medication, any kind of anesthesia, I don't breathe properly. Sometimes as I'm going to sleep or am asleep, I'm not quite sure, I wake up to the world spinning. It's taken me some time to realize that I am not breathing and once it gets bad everything spins and I wake up. There is no blockage there, I just don't breathe. To my knowledge this is central sleep apnea, but I don't know for sure. The rheumy mentioned a sleep study but my husband says I don't do it in the middle of the night, only shortly after getting into bed, so she decided against it. Since he works 3rd shift and I'm alone a lot, it's terrifying to me.)
Since then I've been having a lot of pain, mostly on my left side. I have problems standing, I'm exhausted all the time, I have had weird weakness in my right hand with numbness and tingling, shooting pain from my left hip, etc. For three years (up until November) I worked as a waitress and even though it hurt, I mostly managed. About two years ago I had a major spasm in my back that left me laid up for four days - I found a chiropractor that treated it and she noted that it was a really weird place, not my upper or lower back but right in the middle, except to the left side.
I went to my PCP and told him that I was having all of these problems (because that list up there isn't even half of things). He said, 'Okay, we'll do some tests, and if they come back normal, you can come back.' I went for x-rays of my lumbar spine (and knees, since those had started to ache as well) and some blood tests. They came back normal, but I never saw my PCP again - I always saw a student after that.
For months I was being adjusted by an intern. He made notes of how 'screwed up' my muscles were all over and adjusted me all over (rather than just where it hurt, like the chiro) so even though it didn't DO much, I kept going.
Right about the time I was getting frustrated with nothing happening (at the time they were throwing meloxicam and peroxicam also - one did nothing, and the other made me not breathe and have bed spins) I ended up with a new student doctor. Each visit after that was with a NEW student and I kept whittling symptoms down so as to not overwhelm them or have them yell too much about noncompliance with the meds.
Eventually things were whittled down to my hands hurting. They've always cramped up with use and sometimes went numb. Braces didn't help - in fact they made my hands feel very weak and odd. I went to physical therapy and they did note a lot of weakness (and one time swelling) but it didn't help. I went for an EMG to test for carpal tunnel and it showed VERY minor CT in my right wrist, none in my left (though my left cramps just as much as my right). The 'hand guy' (not sure what kind of doctor, sorry) offered surgery, but I wanted to deal with my wisdom teeth and such and have never gone back.
In the meantime I've developed pain that radiates across my lower back with any kind of exercise, I've started to have a lot of problems (particularly more fatigue and more muscle weakness) when I get too warm...and too warm is now about 72
I'm having a bad day today dealing with 'all this' so I figured I'd come here and spill it all (that's your warning that it's going to be long!) and see if anyone had any insight along the way.
I have always had headaches, cluster headaches, migraines. I've never been seen by anyone for them. I thought a lot of them were due to my wisdom teeth being impacted but nothing has changed in the almost-year since having them removed. I've had issues with pain in the left side of my neck for a long time as well.
In 2003, at 19, I became pregnant. At 11 weeks along I started having shooting pain in my left buttock. My OBGYN said it was 'just sciatica' and to stay off of my feet. At about 22 weeks along I quit my job because I just couldn't work anymore. I had a lot of problems with restless legs and cramps while pregnant, which is normal - except that they've never gone away, and neither has the pain in my butt. The motion sickness that didn't really bother me unless I sat in the back of a car started to bother me a lot more and now I get nauseous if I sit in a rocking chair or watch my son ride a merry-go-round. The bed also spins a lot more than it used to (and it never did before! I also do not drink alcohol of any kind ever). When I had a spinal for my c-section (failed induction) I was not breathing. I wasn't having trouble breathing, I just...wasn't, unless I consciously thought about it. (That has stayed with me - any time I am sedated by sedating medication, any kind of anesthesia, I don't breathe properly. Sometimes as I'm going to sleep or am asleep, I'm not quite sure, I wake up to the world spinning. It's taken me some time to realize that I am not breathing and once it gets bad everything spins and I wake up. There is no blockage there, I just don't breathe. To my knowledge this is central sleep apnea, but I don't know for sure. The rheumy mentioned a sleep study but my husband says I don't do it in the middle of the night, only shortly after getting into bed, so she decided against it. Since he works 3rd shift and I'm alone a lot, it's terrifying to me.)
Since then I've been having a lot of pain, mostly on my left side. I have problems standing, I'm exhausted all the time, I have had weird weakness in my right hand with numbness and tingling, shooting pain from my left hip, etc. For three years (up until November) I worked as a waitress and even though it hurt, I mostly managed. About two years ago I had a major spasm in my back that left me laid up for four days - I found a chiropractor that treated it and she noted that it was a really weird place, not my upper or lower back but right in the middle, except to the left side.
I went to my PCP and told him that I was having all of these problems (because that list up there isn't even half of things). He said, 'Okay, we'll do some tests, and if they come back normal, you can come back.' I went for x-rays of my lumbar spine (and knees, since those had started to ache as well) and some blood tests. They came back normal, but I never saw my PCP again - I always saw a student after that.
For months I was being adjusted by an intern. He made notes of how 'screwed up' my muscles were all over and adjusted me all over (rather than just where it hurt, like the chiro) so even though it didn't DO much, I kept going.
Right about the time I was getting frustrated with nothing happening (at the time they were throwing meloxicam and peroxicam also - one did nothing, and the other made me not breathe and have bed spins) I ended up with a new student doctor. Each visit after that was with a NEW student and I kept whittling symptoms down so as to not overwhelm them or have them yell too much about noncompliance with the meds.
Eventually things were whittled down to my hands hurting. They've always cramped up with use and sometimes went numb. Braces didn't help - in fact they made my hands feel very weak and odd. I went to physical therapy and they did note a lot of weakness (and one time swelling) but it didn't help. I went for an EMG to test for carpal tunnel and it showed VERY minor CT in my right wrist, none in my left (though my left cramps just as much as my right). The 'hand guy' (not sure what kind of doctor, sorry) offered surgery, but I wanted to deal with my wisdom teeth and such and have never gone back.
In the meantime I've developed pain that radiates across my lower back with any kind of exercise, I've started to have a lot of problems (particularly more fatigue and more muscle weakness) when I get too warm...and too warm is now about 72