D
desperatheart
Guest
Hello all. I have been living with pain for about 12 years now and I am at the end of my rope in coping with this. I am so lost right now and am trying to muster up the courage to get back on my health issues. The doctors I have seen in the past made me feel like I was a hypochondriac and it was all in my head. I think I would give anything to have them hop in my body and walk in my shoes for a day.
Anyways something has to change, I can't even begin to explain how this affects my everyday life. In short I am not living at all, am withdrawn and pretty much feel like I am in prison without the stripes. I feel like I have so much to offer the world but I am trapped. I can't plan anything because I dont know how I am going to feel that day. Really I am a mess.
So I was hoping to do my best and explain some of the things I go through on a day to day basis in hopes that someone else might be able to give me some advice on either what to research further or some ideas on what might be causing all of this.
Let me start by saying I have always felt much of what is going on with me has to deal with my bone structure. Some days are better than others, and once in a blue moon I have a really good day where it seems my bones are alligned, I got good rest and feel ok. Although these days are very rare, it reminRAB me what it's like to feel somewhat normal, even if I am not 100%.
I am going to try an articulate this the best I can. I may bounce around a little but I find it very hard to focus on anything, so I will do my best.
I think most of my problems stem from muscular skeletal problems starting at my tailbone. I know I have a short leg, but I think it has progressed into my whole skeletal structure being messed up, all the way from my left foot up to my neck. The bone down by my tailbone on the right feels much more prominent, almost like a little ball compared to the other side. When standing and looking in the mirror, there is a dicernible difference in my hips. One is much higher than the other. I think this bone being out of whack has caused my whole spine to be out of whack all the way up to my neck and facial bones causing severe tmd.
Symptoms
1. Pain all over neck and back.
2. Can't sleep, never feel rested unless I get lucky and my bones get in the right position to rest my body.
3. Neck pain.
4. Swollen Face And Major Pressure in cheeks, facial pain.
5. Speech problems, can't pronounce my worRAB correctly.
6. Bowel Problems, sometimes I need to stand up a little in order go get it out.
7. Extreme fatigue. I am sure some of this has to do with my depression, but I also attribute it to never feeling rested except once in a blue moon.
8. Very anxious, heart racing for no reason at all.
9. Light sensitivity.
10. Itchy skin, especially in sun or any sort of heat flash.
11. Crawling in my skin, very anxious and can't keep my thoughts straight.
Things I Experience When I Am Having A Good Day:
1. I feel rested and somewhat normal. It's pot luck to get in the right position at night to make this happen and get genuine sleep. Sometimes its with one leg up on the wall or some other weird position.
2. I have a deeper voice.
3. My facial swelling subsides a little and I can pronounce my worRAB a litle better. And the pressure is not as great in my face.
4. I can actually feel a swallow in my throat more than on a bad day.
5. I get a good stretch in my lower back, I hear a loud click of a bone down there.
6. I get a good stretch in my left upper back, it seems like it is behind my rib cage. This is probably the most important element of me having a better day. If I happen to sleep ok and get this stretch in the morning, my days are 10X better.
7. When I take a deep breath I feel air going into my left lung. On bad days I usually only feel it on my right lung.
8. If I lay on the bed when I wake up with my head slighly hanging off, I sometimes can get a good stretch in the back of my neck and this can be an incredible feeling.
Other things to note.
Sometimes while sleeping I hear a very loud crack behind my left ear. I am 99% sure this is my atlas shifting and it does appear to relieve pressure.
When I lay on my back by default my left leg and foot tilt to the left side. When I bring the foot back up straight to touch my right foot it puts tremendous pressure on my lower back.
If I lay on my back and bring my knees to my chest, when I bring them back down to the ground I hear an incredible loud noise. It seems like my tailbone or something down there is popping in and out of its joint.
I had some mri's done back in 2006 which essentially came out negative. They found minimal disk bulging at L4 and L5. Maybe I need to get some mri's done but laying and sitting down or standing up in order for the problems to show itself.
Conclusion:
All in all it feels like my whole skeletal system is out of whack. If you can imagine riding in a pickup truck and hitting a big bump that caused your head to hit the ceiling of the truck, this is what my body feels like. It feels like my my spine was all pushed downward, and my whole daily struggle is to get stretches in to lengthen my spine-neck to relieve some of the pressure. The stretches are the only thing that seem to help but it never lasts.
Several years ago when I was trying to make headway with all these issues, I never could find the right doctor. I even went to the ShanRAB in Jax and implored the doctor to give me a full body mri so I can find out once and for all what is going on, but he said this is not in the spirit of medicine. They all just really shove me in and out and don't seem to really listen to me.
I have also tried seeing chiropractors to no avail. They give me a good few cracks but like everything else it's always temporary and I always revert right back the following day.
Money is not an issue with me, I just need to find a doctor that will listen to me and give credence to what I say. Actually this is the one good thing that has come from my ailments. As my symptoms progressed, I found it harder and harder to talk to people with a swollen face and mispronouncing my worRAB. And I got tired of people asking me all the time what is wrong with me. My confidence is shot, so I started learning about online marketing and have built a business that is making me more money than I ever dreamed I would make. I have been able to buy my parents a nice condo, my dad a new car ect.., so this is the one good thing that has come from all of this. But I am tired of living like this and I want to get back to the old me. I have such a good heart and I feel cheated that my symptoms make me someone I am not. Nobody gets the real me and this is all becoming unbearable for me to deal with anymore.
So thanks in advance for reading this book of a post and sorry it is so long. I just wanted to give as much info as possible to give myself the best shot of finding some others in the same boat who might be able to share some things with me. My heart goes out to the other people who have to live like this. It's no way to live, but I know there is help out there for me and I need to find it soon before I go crazy.
Sincerely
desperateheart
Anyways something has to change, I can't even begin to explain how this affects my everyday life. In short I am not living at all, am withdrawn and pretty much feel like I am in prison without the stripes. I feel like I have so much to offer the world but I am trapped. I can't plan anything because I dont know how I am going to feel that day. Really I am a mess.
So I was hoping to do my best and explain some of the things I go through on a day to day basis in hopes that someone else might be able to give me some advice on either what to research further or some ideas on what might be causing all of this.
Let me start by saying I have always felt much of what is going on with me has to deal with my bone structure. Some days are better than others, and once in a blue moon I have a really good day where it seems my bones are alligned, I got good rest and feel ok. Although these days are very rare, it reminRAB me what it's like to feel somewhat normal, even if I am not 100%.
I am going to try an articulate this the best I can. I may bounce around a little but I find it very hard to focus on anything, so I will do my best.
I think most of my problems stem from muscular skeletal problems starting at my tailbone. I know I have a short leg, but I think it has progressed into my whole skeletal structure being messed up, all the way from my left foot up to my neck. The bone down by my tailbone on the right feels much more prominent, almost like a little ball compared to the other side. When standing and looking in the mirror, there is a dicernible difference in my hips. One is much higher than the other. I think this bone being out of whack has caused my whole spine to be out of whack all the way up to my neck and facial bones causing severe tmd.
Symptoms
1. Pain all over neck and back.
2. Can't sleep, never feel rested unless I get lucky and my bones get in the right position to rest my body.
3. Neck pain.
4. Swollen Face And Major Pressure in cheeks, facial pain.
5. Speech problems, can't pronounce my worRAB correctly.
6. Bowel Problems, sometimes I need to stand up a little in order go get it out.
7. Extreme fatigue. I am sure some of this has to do with my depression, but I also attribute it to never feeling rested except once in a blue moon.
8. Very anxious, heart racing for no reason at all.
9. Light sensitivity.
10. Itchy skin, especially in sun or any sort of heat flash.
11. Crawling in my skin, very anxious and can't keep my thoughts straight.
Things I Experience When I Am Having A Good Day:
1. I feel rested and somewhat normal. It's pot luck to get in the right position at night to make this happen and get genuine sleep. Sometimes its with one leg up on the wall or some other weird position.
2. I have a deeper voice.
3. My facial swelling subsides a little and I can pronounce my worRAB a litle better. And the pressure is not as great in my face.
4. I can actually feel a swallow in my throat more than on a bad day.
5. I get a good stretch in my lower back, I hear a loud click of a bone down there.
6. I get a good stretch in my left upper back, it seems like it is behind my rib cage. This is probably the most important element of me having a better day. If I happen to sleep ok and get this stretch in the morning, my days are 10X better.
7. When I take a deep breath I feel air going into my left lung. On bad days I usually only feel it on my right lung.
8. If I lay on the bed when I wake up with my head slighly hanging off, I sometimes can get a good stretch in the back of my neck and this can be an incredible feeling.
Other things to note.
Sometimes while sleeping I hear a very loud crack behind my left ear. I am 99% sure this is my atlas shifting and it does appear to relieve pressure.
When I lay on my back by default my left leg and foot tilt to the left side. When I bring the foot back up straight to touch my right foot it puts tremendous pressure on my lower back.
If I lay on my back and bring my knees to my chest, when I bring them back down to the ground I hear an incredible loud noise. It seems like my tailbone or something down there is popping in and out of its joint.
I had some mri's done back in 2006 which essentially came out negative. They found minimal disk bulging at L4 and L5. Maybe I need to get some mri's done but laying and sitting down or standing up in order for the problems to show itself.
Conclusion:
All in all it feels like my whole skeletal system is out of whack. If you can imagine riding in a pickup truck and hitting a big bump that caused your head to hit the ceiling of the truck, this is what my body feels like. It feels like my my spine was all pushed downward, and my whole daily struggle is to get stretches in to lengthen my spine-neck to relieve some of the pressure. The stretches are the only thing that seem to help but it never lasts.
Several years ago when I was trying to make headway with all these issues, I never could find the right doctor. I even went to the ShanRAB in Jax and implored the doctor to give me a full body mri so I can find out once and for all what is going on, but he said this is not in the spirit of medicine. They all just really shove me in and out and don't seem to really listen to me.
I have also tried seeing chiropractors to no avail. They give me a good few cracks but like everything else it's always temporary and I always revert right back the following day.
Money is not an issue with me, I just need to find a doctor that will listen to me and give credence to what I say. Actually this is the one good thing that has come from my ailments. As my symptoms progressed, I found it harder and harder to talk to people with a swollen face and mispronouncing my worRAB. And I got tired of people asking me all the time what is wrong with me. My confidence is shot, so I started learning about online marketing and have built a business that is making me more money than I ever dreamed I would make. I have been able to buy my parents a nice condo, my dad a new car ect.., so this is the one good thing that has come from all of this. But I am tired of living like this and I want to get back to the old me. I have such a good heart and I feel cheated that my symptoms make me someone I am not. Nobody gets the real me and this is all becoming unbearable for me to deal with anymore.
So thanks in advance for reading this book of a post and sorry it is so long. I just wanted to give as much info as possible to give myself the best shot of finding some others in the same boat who might be able to share some things with me. My heart goes out to the other people who have to live like this. It's no way to live, but I know there is help out there for me and I need to find it soon before I go crazy.
Sincerely
desperateheart