Venting Chronic back pain - Kyphosis and Scoliosis

[egosciente]

Just found out about SN with some research and I found this forum. I feel like I should be scared by being here but I just feel numb. Been 10 years on antidepressants (venlafaxine), had 3 or 4 therapists, always with the same type of cookie cutter advice that does not help in any shape or form solve my problem. I'm 35 and I have an ok life on the outside, tech job, own place, some savings, but no friends, no family, and no passion for anything, and the worst of all, crippling back pain.

I was diagnosed with kyphosis and scoliosis at a very early age, my parents and doctors did not care, fast forward to now I cannot stand or sit more than one hour without having massive pain and wishing to be on bed. I fucking look like quasimodo, can't look at the mirror, hate my body, used to run which was the only thing that gave me peace of mind, did an MRI on the spine this month and I have now a broken vertebrae due to pressure, bulged discs, curvature increased, still doctors don't want to risk and do surgery, and don't give a fuck about pain. For some unknown reason I have hyperelastic skin, thought it was Ehler Danlos Syndrome, doctor said was just some other conective tissue disease, I had insane high heart rate, on a light run I have a +210 bpm heart rate and can sustain it for over an hour (and I have a normal weight), still doctors don't find anything abnormal.

My grandfather suicided himself by hanging, most of my relatives have some form of anxiety or depression, I'm just tired of trying to find solutions and failing over and over, medicine and doctors suck if you have something that is slightly less common or harder to diagnose. I hate being all gloom and doom, I hate being here, I hate being pessimist, I feel bad about feeling bad, it's the meta inside the meta until the exhaustion that never comes.

 

[carac]

I really feel you, I had years of agonizing and debilitating chronic back pain. Doctors would do nothing except send me for pysio which never really helped despite me doing everything they asked and so much more, I was desperate for relief. Stopped me doing pretty much everything at held me back in life. Had it from the age of about 25 to like a year ago and I am 46 now. I was lucky enough to manage to resolve i though.

 

[egosciente]

I really feel you, I had years of agonizing and debilitating chronic back pain. Doctors would do nothing except send me for pysio which never really helped despite me doing everything they asked and so much more, I was desperate for relief. Stopped me doing pretty much everything at held me back in life. Had it from the age of about 25 to like a year ago and I am 46 now. I was lucky enough to manage to resolve i though.

I also did physio for some years, it eases the pain for like some hours, the next day I'm exactly the same. How did you resolve it?

 

[FuneralCry]

It really sounds like you've suffered so much and it must be really torturous what you go through, existence certainly is too cruel. But anyway best wishes.

 

[WoNkEy_DoNkEy]

Just found out about SN with some research and I found this forum. I feel like I should be scared by being here but I just feel numb. Been 10 years on antidepressants (venlafaxine), had 3 or 4 therapists, always with the same type of cookie cutter advice that does not help in any shape or form solve my problem. I'm 35 and I have an ok life on the outside, tech job, own place, some savings, but no friends, no family, and no passion for anything, and the worst of all, crippling back pain.

I was diagnosed with kyphosis and scoliosis at a very early age, my parents and doctors did not care, fast forward to now I cannot stand or sit more than one hour without having massive pain and wishing to be on bed. I fucking look like quasimodo, can't look at the mirror, hate my body, used to run which was the only thing that gave me peace of mind, did an MRI on the spine this month and I have now a broken vertebrae due to pressure, bulged discs, curvature increased, still doctors don't want to risk and do surgery, and don't give a fuck about pain. For some unknown reason I have hyperelastic skin, thought it was Ehler Danlos Syndrome, doctor said was just some other conective tissue disease, I had insane high heart rate, on a light run I have a +210 bpm heart rate and can sustain it for over an hour (and I have a normal weight), still doctors don't find anything abnormal.

My grandfather suicided himself by hanging, most of my relatives have some form of anxiety of depression, I'm just tired of trying to find solutions and failing over and over, medicine and doctors suck if you have something that is slightly less common or harder to diagnose. I hate being all gloom and doom, I hate being here, I hate being pessimist, I feel bad about feeling bad, it's the meta inside the meta until the exhaustion that never comes.

With experience of such a high heat rate you'd find the SN inducing 170bpm a breeze. As for your back problems, they definitely sound worse than mine overall but nevertheless as someone who suffers from an anterior pelvic tilt, scoliosis, lordosis, lumbar and thoracic kyphosis I can definitely sympathise and be sorry for your suffering.

 

[KuriGohan&Kamehameha]

I am so sorry to hear about your pain, our situations are almost identical, albeit I don't have EDS. Have you heard of mixed connective tissue autoimmune diseases? Your symptoms sound very similar to MCTD and unfortunately it is extremely under diagnosed as many doctors aren't informed about it (even some rheumatologists).

I'm 10 years younger than you and suffer from a host of chronic pain conditions like you, including scoliosis, degenerative disc disease, and inflammatory lesions of the spine which could be from degenerative disc disease or ankylosing spondylitis. I'm convinced doctors are the most sadistic people on this earth because they care way more about liability than actually treating anyone's pain, they are constantly afraid of getting in trouble if they actually do anything vaguely risky that could actually help someone unless it's a life or death situation. They view chronic pain as unimportant.

Totally relate to clinging to the bed for relief, as I spend most of my life laying in bed due to fatigue and foreboding sense of doom about the next time the pain will set in when sitting standing or walking too much. I've been told time and time again to just take paracetamol and exercise. It doesn't help. When the pain is so deep in your spine, these idiot doctors do not realize a little paracetamol or ibuprofen doesn't cut it.

None of us wants to be here, it's extremely unfair and you deserve way better than being forced to endure pain everyday due to the inherent risk adverseness of modern medicine. It is crazy to me the way that we suffer now, when decades ago everyone and their mom was popping benzos, barbiturates, and getting opiates left and right. Now, it really does feel impossible to get the necessary procedures or proper pain relief due to gatekeeping doctors.

I wish you could be well again, it's so unfair.

 

[carac]

I also did physio for some years, it eases the pain for like some hours, the next day I'm exactly the same. How did you resolve it?

I had other chronic issues as well and I discovered they were all linked to like mental anxiety. There was a book called Healing Back Pain by Dr Sarno that really helped. A couple of videos about it are on my profile. Obviously this was a problem specific to me so not saying it would work for you. Sorry for all your pain you are going through, it's hell if you can't find a resolution

 

[egosciente]

I am so sorry to hear about your pain, our situations are almost identical, albeit I don't have EDS. Have you heard of mixed connective tissue autoimmune diseases? Your symptoms sound very similar to MCTD and unfortunately it is extremely under diagnosed as many doctors aren't informed about it (even some rheumatologists).

I'm 10 years younger than you and suffer from a host of chronic pain conditions like you, including scoliosis, degenerative disc disease, and inflammatory lesions of the spine which could be from degenerative disc disease or ankylosing spondylitis. I'm convinced doctors are the most sadistic people on this earth because they care way more about liability than actually treating anyone's pain, they are constantly afraid of getting in trouble if they actually do anything vaguely risky that could actually help someone unless it's a life or death situation. They view chronic pain as unimportant.

Totally relate to clinging to the bed for relief, as I spend most of my life laying in bed due to fatigue and foreboding sense of doom about the next time the pain will set in when sitting standing or walking too much. I've been told time and time again to just take paracetamol and exercise. It doesn't help. When the pain is so deep in your spine, these idiot doctors do not realize a little paracetamol or ibuprofen doesn't cut it.

None of us wants to be here, it's extremely unfair and you deserve way better than being forced to endure pain everyday due to the inherent risk adverseness of modern medicine. It is crazy to me the way that we suffer now, when decades ago everyone and their mom was popping benzos, barbiturates, and getting opiates left and right. Now, it really does feel impossible to get the necessary procedures or proper pain relief due to gatekeeping doctors.

I wish you could be well again, it's so unfair.

Haven't heard of MCTD, quick search says that Anti-U1-RNP antibodies are necessary for diagnosis, but a positive is not necessarly MCTD. Did you make this test? When I went to the genetics specialist because of hyperelastic-skin/EDS he said it could be Noonan syndrome and passed me a credential to do a genome sequencing for a bunch of genetic diseases, I'm still considering if it's worth the money to do it since it's not covered by insurance.

 

[egosciente]

I had other chronic issues as well and I discovered they were all linked to like mental anxiety. There was a book called Healing Back Pain by Dr Sarno that really helped. A couple of videos about it are on my profile. Obviously this was a problem specific to me so not saying it would work for you. Sorry for all your pain you are going through, it's hell if you can't find a resolution

I've came across this book and read some chapters years ago, maybe I'll revisit it since I don't remember much. I've also had therapists with the anxiety/stress/psychosomatic theory which is not very logical to me because why it should ony manifest in the same place where I have a very noticeable physical problem?

Also I don't find any correlation with stress/anxiety, there's no difference in pain if I'm having a shitty day at work or chilling at a beach on on the Bahamas, however if do some form of impact sport which I've almost completly stop doing, it's guranteed that I will be worse afterwards. I don't even have (or very, very rarely) headaches which is one of the few things that I'm grateful for.

But you talk about chronic pain to a psychologist and immediately get hammered down with the mind/body connection, which certainly is a thing, but doesn't mean it's always the case.

 

[carac]

I've came across this book and read some chapters years ago, maybe I'll revisit it since I don't remember much. I've also had therapists with the anxiety/stress/psychosomatic theory which is not very logical to me because why it should ony manifest in the same place where I have a very noticeable physical problem?

Also I don't find any correlation with stress/anxiety, there's no difference in pain if I'm having a shitty day at work or chilling at a beach on on the Bahamas, however if do some form of impact sport which I've almost completly stop doing, it's guranteed that I will be worse afterwards. I don't even have (or very, very rarely) headaches which is one of the few things that I'm grateful for.

But you talk about chronic pain to a psychologist and immediately get hammered down with the mind/body connection, which certainly is a thing, but doesn't mean it's always the case.

Yea the mind body stuff can be very invalidating. All I can say is that it honestly worked for which I can see can be very frustrating for those with real structural problems. I definetly think there needs to be more research and understanding in these areas.

 

[FujoshiNeet]

I'm really sorry to hear about your struggles. My sister had scoliosis and the surgery she got for it was botched and left her handicapped and still in massive amounts of paint. She ended up catching the bus with the pain meds used to manage her pain.