To Re: Spinal injury/trauma - I'm not sure when you posted, but I thought I'd share that I have lived a similar path especially in recent years. I work out like a normal person - not training for the Iron Man or anything - and then all of a sudden I'll have some wickedly painful issue. In the last two years I've had hip surgery, which I do not believe was related to the dysautonomia, but my recovery was problematic. We'd make progress in PT and then have to halt because the pain would go off the charts and we'd have to take a week or two off and then start all over. Then seven months after my hip surgery I just had wicked shoulder pain one day when working out with my trainer. I thought I had strained something so we tried adapting the workouts but the pain was so bad I couldn't even hold onto the handle of the eliptical machine. Went to see my knee/shoulder ortho and the MRI showed that my clavicle was just crumbling. It hadn't bothered me at all when I was on crutches just months before for my hip surgery and appears to just have decided to crumble out of nowhere and the swelling in my arm was unbelievable and even shocked my orthopedic. Then in September of this year my back just started killing me, and my left thigh felt like a bon fire was raging and I had lost feeling on my entire inner thigh. We did MRIs - one with and one without contrast, and five days later I was having back surgery on L2-L3 for a sequestered disc fragment that was much larger than it appeared on film and it had been compressing my L3 nerve. The surgery helped the pain my now my back pain flares with any type of workout or just by going to PT (I'm only 6 weeks post-op). My symptoms aren't as extensive as yours, but what I do know is that out of my eight ortho surgeries that last four plus the recovery from my appendectomy have taken three to four times longer than most people. You do feel like you are going crazy because it doesn't seem to make sense that these types of things can just happen out of nowhere. However, speaking from experience they can and I had no idea why until I met my sister's neurologist who dianosed my with dysautonomia after an extensive physical exam, looking at my films from previous surgeries and hearing about my recovery challenges. My sister has a peripheral neuropathy that appears to have formed from a virus. This whole disease makes no sense. My best advice is get a neurologist who specializes in autonomic disorders and work with them to find a medication and exercise plan to minimize your symptoms. My sister's doc has done wonders for her. He also works with my surgeons before I have surgery so that my pain outcome is hopefully minimized, but he has advised to avoid surgery if at all possible because the rehabe will be long and painful and filled with narcotics.
Sorry this is so long, but hopefully it helps you.
Re: High-salt diet — side effect: edema, heartburn
Re: Ephedrine — I have not used Ephedrine yet, but the intention is to use this to tackle several issues, these being low cardiac pumping force, a slow heart rate, and the failure of peripheral blood vessels to constrict when standing. No heart disease, no adrenal disease, just autonomic malfunction. Similarly, because it has a short half life, it is less likely to exacerbate my chronic insomnia, for which Xyrem is to be considered.
The actual diagnosis is chronic dysautonomia following a viral infection, and finding that I am chronically infected with Xenotropic Murine Leukaemia related Retrovirus, XMRV. This leaves one obvious question, is my dysautonomia allowing an infection to persist, or is the infection causing my dysautonomia? Suffice to say, treating my dysautonomia is safer and easier, as the antiviral drug Raltegravir, is both toxic and very expensive.
Re: Pink spots on skin (pin prick size) — my brother he is 10-11 old boy and he he have so many pink spots on the skin and he is itching
Re: Spinal injury/trauma — Severe pain and inability to move my neck suddenly one evening brought me to the operating table, with an intrusive posterior laminectomy at C4-5. I was and had always been a very healthy, very active individual. Health fanatic, marathon runner, yoga geek, healthy! Post-op, I developed several "conditions" too numerous to list but fit almost all symptoms of Dysautonomia, most intrusive of all, a condition finally diagnosed as POTS. Debilitating nerve pain, light-headedness/fainting, severe activity intolerance, headaches, tachycardia, digestive issues, all of which I was told were just bad luck, all presented 6-8 weeks following my surgery. I am desperate to find others who have had onset symptoms following a trauma/surgery to the neck. I am told by my multitude of specialists that surgery to the neck at C2-C7 could not affect ANS function nor induce Dysautonomia/POTS. I never experienced any of the associated symptoms until my first neck surgery and it is denied by my surgeon, while "possibly" supported by other neurosurgeons that this is plausible. Is there anyone out there who has had or has heard of a similar experience?
To Re: Spinal injury/trauma - I'm not sure when you posted, but I thought I'd share that I have lived a similar path especially in recent years. I work out like a normal person - not training for the Iron Man or anything - and then all of a sudden I'll have some wickedly painful issue. In the last two years I've had hip surgery, which I do not believe was related to the dysautonomia, but my recovery was problematic. We'd make progress in PT and then have to halt because the pain would go off the charts and we'd have to take a week or two off and then start all over. Then seven months after my hip surgery I just had wicked shoulder pain one day when working out with my trainer. I thought I had strained something so we tried adapting the workouts but the pain was so bad I couldn't even hold onto the handle of the eliptical machine. Went to see my knee/shoulder ortho and the MRI showed that my clavicle was just crumbling. It hadn't bothered me at all when I was on crutches just months before for my hip surgery and appears to just have decided to crumble out of nowhere and the swelling in my arm was unbelievable and even shocked my orthopedic. Then in September of this year my back just started killing me, and my left thigh felt like a bon fire was raging and I had lost feeling on my entire inner thigh. We did MRIs - one with and one without contrast, and five days later I was having back surgery on L2-L3 for a sequestered disc fragment that was much larger than it appeared on film and it had been compressing my L3 nerve. The surgery helped the pain my now my back pain flares with any type of workout or just by going to PT (I'm only 6 weeks post-op). My symptoms aren't as extensive as yours, but what I do know is that out of my eight ortho surgeries that last four plus the recovery from my appendectomy have taken three to four times longer than most people. You do feel like you are going crazy because it doesn't seem to make sense that these types of things can just happen out of nowhere. However, speaking from experience they can and I had no idea why until I met my sister's neurologist who dianosed my with dysautonomia after an extensive physical exam, looking at my films from previous surgeries and hearing about my recovery challenges. My sister has a peripheral neuropathy that appears to have formed from a virus. This whole disease makes no sense. My best advice is get a neurologist who specializes in autonomic disorders and work with them to find a medication and exercise plan to minimize your symptoms. My sister's doc has done wonders for her. He also works with my surgeons before I have surgery so that my pain outcome is hopefully minimized, but he has advised to avoid surgery if at all possible because the rehabe will be long and painful and filled with narcotics.
Sorry this is so long, but hopefully it helps you.
Re: High-salt diet — side effect: edema, heartburn
Re: Ephedrine — I have not used Ephedrine yet, but the intention is to use this to tackle several issues, these being low cardiac pumping force, a slow heart rate, and the failure of peripheral blood vessels to constrict when standing. No heart disease, no adrenal disease, just autonomic malfunction. Similarly, because it has a short half life, it is less likely to exacerbate my chronic insomnia, for which Xyrem is to be considered.
The actual diagnosis is chronic dysautonomia following a viral infection, and finding that I am chronically infected with Xenotropic Murine Leukaemia related Retrovirus, XMRV. This leaves one obvious question, is my dysautonomia allowing an infection to persist, or is the infection causing my dysautonomia? Suffice to say, treating my dysautonomia is safer and easier, as the antiviral drug Raltegravir, is both toxic and very expensive.
Re: Pink spots on skin (pin prick size) — my brother he is 10-11 old boy and he he have so many pink spots on the skin and he is itching
Re: Spinal injury/trauma — Severe pain and inability to move my neck suddenly one evening brought me to the operating table, with an intrusive posterior laminectomy at C4-5.
I was and had always been a very healthy, very active individual. Health fanatic, marathon runner, yoga geek, healthy!
Post-op, I developed several "conditions" too numerous to list but fit almost all symptoms of Dysautonomia, most intrusive of all, a condition finally diagnosed as POTS.
Debilitating nerve pain, light-headedness/fainting, severe activity intolerance, headaches, tachycardia, digestive issues, all of which I was told were just bad luck, all presented 6-8 weeks following my surgery.
I am desperate to find others who have had onset symptoms following a trauma/surgery to the neck.
I am told by my multitude of specialists that surgery to the neck at C2-C7 could not affect ANS function nor induce Dysautonomia/POTS. I never experienced any of the associated symptoms until my first neck surgery and it is denied by my surgeon, while "possibly" supported by other neurosurgeons that this is plausible.
Is there anyone out there who has had or has heard of a similar experience?