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Bad News Given To Me Today.
- Post starter Paranoid10
- Start date
- Status
Hi Paranoid10,
I am sorry for the news you received. I can totally understand you feel more than depressed. I of course hope you will be able to make it through the adustment process naturally, but if the depression continues, can you see a therappist who is experienced with treating people with chronic health conditions? I am assuming you arehere mostly becaus eyou have PTSD, and an addition life event can set off a "flare" (don't know whaat to call it) of PTSD too I think. I am sending you healing thoughts for a good mental recovery.
I am sorry for the news you received. I can totally understand you feel more than depressed. I of course hope you will be able to make it through the adustment process naturally, but if the depression continues, can you see a therappist who is experienced with treating people with chronic health conditions? I am assuming you arehere mostly becaus eyou have PTSD, and an addition life event can set off a "flare" (don't know whaat to call it) of PTSD too I think. I am sending you healing thoughts for a good mental recovery.
KP the nut
VIP Member
(((Paranoid))), just stopping by to see how you are doing.
Take care
KP
Take care
KP
Phoenix_Rising
Platinum Member
Hi,
I too, can relate. I have a lot of physical abnormalities, mostly congenital. One such thing is Bertolotti's Syndrome, which more or less means that my sacrum and lower vertebrae are fused together, causing a joint that is not supposed to be there.
As a result, I have excruciating pain in every part of my body. It has gotten worse as I have gotten older, I have had pain since I was in my teens. But I have spent my entire adulthood in excruciating pain that nothing really helps or alleviates (or not much, at any rate). I can't function the same way others can who are my age (I am 34 now, so in a similar boat as you, but it is been incapacitating since around age 19 or 20), my energy is limited, and moving and therefore getting anything done is difficult, even with exercising and Tylenol 3s and muscle relaxants. The joint that isn't supposed to be there causes severe pain and inflammation, I can't stand for even 2 minutes.
It causes pain in all the surrounding muscles in my glute area, so I have burning pain in my legs and extremely tight leg muscles and pain all throughout my legs, and cascades all the way up my back, (also my neck, shoulders, and jaw) which also affects the muscles in my chest and abdominal area, my whole torso. I have great difficulty going up stairs.
It also effects the ligaments and tendons and muscles internally.
I've tried everything from chiropractic to massage therapy, exercise, prolo therapy, intramuscular stimulation, neurofeedback, I have seen a rheumatologist, gone to the pain clinic, and a surgeon. The same thing every time: Good for you, you are doing all the right things, and that's a real battle for most people, but there is nothing we can do for you.
Some people might characterize what I have as fibromyalgia, but, my dr who has been treating my pain for many years, and myself, think it--whatever "it" is, is mechanically induced (ie due to malfunctions and abnormalities in my body that do not happen to most people).
There was a period this doctor was adjusting and "un-sticking" my tail bone, which gave me a lot of relief in that joint, and my massage therapist said whatever we were doing, we should keep doing, because it was having a significant effect on my muscles, and they were loosening up. Unfortunately, this required an internal adjustment which was unpleasant for him and excruciating for me, and only lasted a week before it would go back to it's "stuck" position and eventually he did not want to do that any more, and I could not blame him. It was not like it lasted a few months, and wasn't any great joy to me either.
So, you have my greatest empathy... It's definitely one of those things that people just don't understand unless they have lived with something like that.
I'm sorry that you have to join the club :( It really sucks.
I too, can relate. I have a lot of physical abnormalities, mostly congenital. One such thing is Bertolotti's Syndrome, which more or less means that my sacrum and lower vertebrae are fused together, causing a joint that is not supposed to be there.
As a result, I have excruciating pain in every part of my body. It has gotten worse as I have gotten older, I have had pain since I was in my teens. But I have spent my entire adulthood in excruciating pain that nothing really helps or alleviates (or not much, at any rate). I can't function the same way others can who are my age (I am 34 now, so in a similar boat as you, but it is been incapacitating since around age 19 or 20), my energy is limited, and moving and therefore getting anything done is difficult, even with exercising and Tylenol 3s and muscle relaxants. The joint that isn't supposed to be there causes severe pain and inflammation, I can't stand for even 2 minutes.
It causes pain in all the surrounding muscles in my glute area, so I have burning pain in my legs and extremely tight leg muscles and pain all throughout my legs, and cascades all the way up my back, (also my neck, shoulders, and jaw) which also affects the muscles in my chest and abdominal area, my whole torso. I have great difficulty going up stairs.
It also effects the ligaments and tendons and muscles internally.
I've tried everything from chiropractic to massage therapy, exercise, prolo therapy, intramuscular stimulation, neurofeedback, I have seen a rheumatologist, gone to the pain clinic, and a surgeon. The same thing every time: Good for you, you are doing all the right things, and that's a real battle for most people, but there is nothing we can do for you.
Some people might characterize what I have as fibromyalgia, but, my dr who has been treating my pain for many years, and myself, think it--whatever "it" is, is mechanically induced (ie due to malfunctions and abnormalities in my body that do not happen to most people).
There was a period this doctor was adjusting and "un-sticking" my tail bone, which gave me a lot of relief in that joint, and my massage therapist said whatever we were doing, we should keep doing, because it was having a significant effect on my muscles, and they were loosening up. Unfortunately, this required an internal adjustment which was unpleasant for him and excruciating for me, and only lasted a week before it would go back to it's "stuck" position and eventually he did not want to do that any more, and I could not blame him. It was not like it lasted a few months, and wasn't any great joy to me either.
So, you have my greatest empathy... It's definitely one of those things that people just don't understand unless they have lived with something like that.
I'm sorry that you have to join the club :( It really sucks.
Eleanor
Diamond Member
Paranoid10, any news? How is it going? Keeping you in my prayers...
@Phoenix Rising
Gods, Phoenix, that sounds horrific. If this doc doesn't want to do the adjustment, could you find another (or have him teach someone else who is "tougher" to do it?) Short intense pain for a week of relief sounds like an acceptable bargain. In any case its given you a crucial piece of data - that you could take to someone else. A neurologist or a surgeon. I wonder about fusing the joint surgically? Or (totally unfamiliar with the neurology of the place so no clue if this even makes sense) doing the people equivalent of "nerving" the spot? I had a horse with osteomyelitis in his hoof, it had abcessed and we needed him to walk on it to get the drugs/blood to circulate properly to treat it. The thing was, it was too painful for him to even put it on the ground. So my horse-shoer (Dave McKibben, God rest his soul) suggested we borrow a play from the unscrupulous show ring cowboy and shoot some alcohol into the nerve to deaden the feeling in the hoof - no pain, the horse would put his foot on the ground again, right? (Western pleasure horses are not supposed to swish or wring their tails, and the most effective way to ensure that they don't is to shoot alcohol into the nerve at the base of their tail, which temporarily deadens the nerve - unless you do it too often and then it kills it permanently.) Vet's "nerve" horses, but when they do it surgically it is permanent, so they are reluctant to do it. The alcohol thing works, but you need someone with a steady hand and an exact knowledge of anatomy to do it (kind of like steroid injections into joints but more so.) As it happened we started the horse on a new drug, and decided to give it a few days. He started putting some weight on the hoof within a few days, and the experimental stuff we had the horse on cleared up the osteomyletis (an unheard of thing) so we never had to nerve him. The thing is, we knew this would work, its just not standard practice. (Also - there is a lot of freedom that comes with knowing the horse is going to die if you can't get the thing treated, which makes it entirely different.)
God I hate chronic pain, and doctors who just roll over in the face of it...I suppose it is because they just don't really "believe" in it.
@Phoenix Rising
Gods, Phoenix, that sounds horrific. If this doc doesn't want to do the adjustment, could you find another (or have him teach someone else who is "tougher" to do it?) Short intense pain for a week of relief sounds like an acceptable bargain. In any case its given you a crucial piece of data - that you could take to someone else. A neurologist or a surgeon. I wonder about fusing the joint surgically? Or (totally unfamiliar with the neurology of the place so no clue if this even makes sense) doing the people equivalent of "nerving" the spot? I had a horse with osteomyelitis in his hoof, it had abcessed and we needed him to walk on it to get the drugs/blood to circulate properly to treat it. The thing was, it was too painful for him to even put it on the ground. So my horse-shoer (Dave McKibben, God rest his soul) suggested we borrow a play from the unscrupulous show ring cowboy and shoot some alcohol into the nerve to deaden the feeling in the hoof - no pain, the horse would put his foot on the ground again, right? (Western pleasure horses are not supposed to swish or wring their tails, and the most effective way to ensure that they don't is to shoot alcohol into the nerve at the base of their tail, which temporarily deadens the nerve - unless you do it too often and then it kills it permanently.) Vet's "nerve" horses, but when they do it surgically it is permanent, so they are reluctant to do it. The alcohol thing works, but you need someone with a steady hand and an exact knowledge of anatomy to do it (kind of like steroid injections into joints but more so.) As it happened we started the horse on a new drug, and decided to give it a few days. He started putting some weight on the hoof within a few days, and the experimental stuff we had the horse on cleared up the osteomyletis (an unheard of thing) so we never had to nerve him. The thing is, we knew this would work, its just not standard practice. (Also - there is a lot of freedom that comes with knowing the horse is going to die if you can't get the thing treated, which makes it entirely different.)
God I hate chronic pain, and doctors who just roll over in the face of it...I suppose it is because they just don't really "believe" in it.
FullofWorry
New Here
I am a veteran too and I know that the VA can be the bearer of bad news and slow progress. I would double check this diagnosis. If it is something this serious you will want to be sure. I barely have the use of my legs. I am 24. My right leg was operated on a year ago and I found out yesterday the surgery looks like a complete disaster. It is worse now than it ever was. I try as hard as I can to not use a wheelchair but somedays it is inevitable. I feel quite useless but at the same time I have to accept the cards I have been dealt. I understand it is hard and if you ever need someone to talk to I am here. I have a few other health issues but my knees are my biggest concern. After all if you don't have your legs you lose your mobility and everything is harder. Ultimately you have to do your best to accept it and adapt.
Life is never perfect, but if you try it can be quite enjoyable. You just have to stay optimistic and hope that in the future maybe there will be a medical cure. I am sorry I don't have many happy-go-lucky things to say, but it is hard, I know it is hard, I cannot imagine being in your shoes, but I can come close to it. You just need to stay as positive as you can. I know how it feels to be young and feel like you are falling apart.
Life is never perfect, but if you try it can be quite enjoyable. You just have to stay optimistic and hope that in the future maybe there will be a medical cure. I am sorry I don't have many happy-go-lucky things to say, but it is hard, I know it is hard, I cannot imagine being in your shoes, but I can come close to it. You just need to stay as positive as you can. I know how it feels to be young and feel like you are falling apart.
simplekindofgirl
Platinum Member
((((Paranoid)))) Sending you warm, happy vibes....
LittleBear
Bronze Member
I have serious vascular leg issues also. I am going to try not to make this long. I have a tendency to lecture when I try, like Eleanor, to "fix" or prevent things that I've lived through from happening to other people.
One and this is foremost...follow the doctor's orders exactly on those blood thinners. I got hard headed and careless and wound up with not one but two pulmonary embolisms at the same time. Second act: The hospital doctor was not very competent and even prescribed drugs that weren't available in this country. Result: She overdosed me on blood thinners and I dang (being polite here) near bled out.
When you get started get tested on a regular basis as prescribed. Yes, it's an inconvenience but better than having to go through an extremely close call...twice! I mean danger close!
Finally, as mentioned also...permanent and life time for medical problems ain't so permanent anymore. Medical science and development have left the linear growth rate and are going exponential in growth rate. Cancer...while not your issue, is going to become a, "Yawn", diagnosis very soon.
Hope not only springs eternal, it's becoming reality.
And...thank-you for your service to our country. Thank-you so very much.
LBear
One and this is foremost...follow the doctor's orders exactly on those blood thinners. I got hard headed and careless and wound up with not one but two pulmonary embolisms at the same time. Second act: The hospital doctor was not very competent and even prescribed drugs that weren't available in this country. Result: She overdosed me on blood thinners and I dang (being polite here) near bled out.
When you get started get tested on a regular basis as prescribed. Yes, it's an inconvenience but better than having to go through an extremely close call...twice! I mean danger close!
Finally, as mentioned also...permanent and life time for medical problems ain't so permanent anymore. Medical science and development have left the linear growth rate and are going exponential in growth rate. Cancer...while not your issue, is going to become a, "Yawn", diagnosis very soon.
Hope not only springs eternal, it's becoming reality.
And...thank-you for your service to our country. Thank-you so very much.
LBear
- Status
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