Mark, I'm so sorry you're dealing with worsening pain right now but I'm glad you have a doctor's appointment. Please keep us all updated! A couple of weeks ago I had pain blockage to my lumbar area done and another one due this week to see if it works for the pain. It has helped and if this one goes well I get back ablation done next month. I went to an osteopath and then was referred to a spine specialist after physical therapy wasn't helping. I hope you find a path to your healing quickly...for the pain relief. For years I've worked through pain as you have and it's incredibly difficult mentally and physically some days. I share this because I think you had mentioned your back was the pain. Maybe an osteopath or spine specialist might help? Thinking of your health and sending good thoughts your way. Sara
So sorry to hear you’re dealing with such debilitating chronic pain, Mark. My daughter who has chronic pain and many related issues from EDS is getting one of the new Sprint devices implanted at the top of her spine for cervical chronic pain. Crazy to think that it could possibly retrain the pain signals to her brain in two months if it succeeds for her. Sending positive thoughts to you for relief.
Thanks so much, Christine. I'm sorry to hear about what your daughter is dealing with. I know a few people with EDS. I really hope the new tech advances help!
Mark, I’m really sorry to hear you’re in pain. I was moving like the tin man until I discovered the Whole Foods 30 diet. Have you tried something like that? Pain is inflammation, which you probably know, so an anti-inflammatory diet might help. It’s a 30 day deal, so if it doesn’t work then you forget about it and move on. I hope something makes you feel better.
I haven't tried that. I do think inflammation is an issue though less so in the past year or so due to lifestyle changes.
I have kind of a lot of different overlapping/interwoven medical and mental health issues so, as you know, it can make it tricky to pin down the culprit(s) :(
I hope you’re ok and the doctors can help you, Mark. Another thing I’ve started doing is taking a methylated B12 everyday because I have the MTHFR gene mutation (it is a “you know what,” as the acronym suggests)!! I’m not even sure MTHFR is an acronym, but anyways, that gene affects the way your body processes vitamin B. If you have the gene, you always have a deficiency of B vitamin, I guess. The B deficiency causes many problems and results in nerve pain, etc. Have you been checked for that gene mutation? It can cause or contribute to a whole host of mental health problems such as schizophrenia and bipolar disorder, etc. as well as physical problems.
I have trigeminal neuralgia, but it’s not the typical kind. Atypical TN causes chronic facial pain. My son has it, too. It’s pressure on the cranial nerve that can be extremely painful (called the suicide disease, in fact) It was brought on by a facial injury. As I’ve said, mine was not that bad but just constant pain and pressure in my face. Sometimes all of my teeth feel like they have cavities. Osteopathic manipulation also helped a lot with that.
Anyways, after years of pain, I’m feeling much better. I hope the same will be true for you.
I was just talking to a rheumatologist a few weeks ago who had never heard of it... on the plus side, he was interested enough to google it on the spot... still, concerning...
Docs (physical & mental health) haven't known how I can deal with it...
Try the methylated vitamin b12 if you haven’t already. I’m not even sure how I got better but I did feel so much better after trying some different approaches. There are individuals (not necessarily doctors) in the country who specialize in the MTHFR gene mutation. I guess there are various expressions of that gene. I still don’t really understand it. They studied the gene as geneticists or nurltrition specialists. My brother in law is a geneticist and an expert in that gene mutation, supposedly.
There was a time when I thought I might need to have brain surgery to free the impinged nerve, but I didn’t have to go that route…although it might have helped me in other ways! Maybe I could have asked them to work on my obsessive cumpulsiveness 😆
When it rains and the temps drop quickly, the rain still gives me pain. I have to go to bed…
I have tried the methylated vitamin b12 and it makes me feel, well, weird... which is frustrating ... bloodwork has also shown high b12 in the past which is odd given I'm vegetarian and have a range of mental health issues... but so it goes... we're all individuals after all with unique mind-body compositions ...
That's interesting that your brother has experience in the field. I appreciate the add-on of "supposedly". Speaks volumes.
We can continue our discussion of the physical/mental health issues via email. A lot to unpack and much of it probably isn't helpful or necessary for others to hear about :P
Glad to find a creative with some words approaching "kind" for the promise of LLMs. Personally, until the LLM companies compensate content creators for their "content," they are high-tech thieves.
Mark, I'm so sorry you're dealing with worsening pain right now but I'm glad you have a doctor's appointment. Please keep us all updated! A couple of weeks ago I had pain blockage to my lumbar area done and another one due this week to see if it works for the pain. It has helped and if this one goes well I get back ablation done next month. I went to an osteopath and then was referred to a spine specialist after physical therapy wasn't helping. I hope you find a path to your healing quickly...for the pain relief. For years I've worked through pain as you have and it's incredibly difficult mentally and physically some days. I share this because I think you had mentioned your back was the pain. Maybe an osteopath or spine specialist might help? Thinking of your health and sending good thoughts your way. Sara
Oh wow, you're going for the ablation? I've been unsure about that procedure.
The main issue is lumbar (low back) pain.
Still unsure if I have something a little more insidious going on... or if it's more in the nebulous camp of fibro.
Thanks for the kind wishes, Sara. Truly appreciated.
Sorry to hear you're dealing with so much of this unpleasantness yourself. I think all too many suffer in silence.
So sorry to hear you’re dealing with such debilitating chronic pain, Mark. My daughter who has chronic pain and many related issues from EDS is getting one of the new Sprint devices implanted at the top of her spine for cervical chronic pain. Crazy to think that it could possibly retrain the pain signals to her brain in two months if it succeeds for her. Sending positive thoughts to you for relief.
Thanks so much, Christine. I'm sorry to hear about what your daughter is dealing with. I know a few people with EDS. I really hope the new tech advances help!
Mark, I’m really sorry to hear you’re in pain. I was moving like the tin man until I discovered the Whole Foods 30 diet. Have you tried something like that? Pain is inflammation, which you probably know, so an anti-inflammatory diet might help. It’s a 30 day deal, so if it doesn’t work then you forget about it and move on. I hope something makes you feel better.
I haven't tried that. I do think inflammation is an issue though less so in the past year or so due to lifestyle changes.
I have kind of a lot of different overlapping/interwoven medical and mental health issues so, as you know, it can make it tricky to pin down the culprit(s) :(
I hope you’re ok and the doctors can help you, Mark. Another thing I’ve started doing is taking a methylated B12 everyday because I have the MTHFR gene mutation (it is a “you know what,” as the acronym suggests)!! I’m not even sure MTHFR is an acronym, but anyways, that gene affects the way your body processes vitamin B. If you have the gene, you always have a deficiency of B vitamin, I guess. The B deficiency causes many problems and results in nerve pain, etc. Have you been checked for that gene mutation? It can cause or contribute to a whole host of mental health problems such as schizophrenia and bipolar disorder, etc. as well as physical problems.
I have trigeminal neuralgia, but it’s not the typical kind. Atypical TN causes chronic facial pain. My son has it, too. It’s pressure on the cranial nerve that can be extremely painful (called the suicide disease, in fact) It was brought on by a facial injury. As I’ve said, mine was not that bad but just constant pain and pressure in my face. Sometimes all of my teeth feel like they have cavities. Osteopathic manipulation also helped a lot with that.
Anyways, after years of pain, I’m feeling much better. I hope the same will be true for you.
Sorry this post is so long…
Just emailed you about TN... disturbing and scary.
I have the MTHFR gene (and I suspect we all make that same joke!!)
I was just talking to a rheumatologist a few weeks ago who had never heard of it... on the plus side, he was interested enough to google it on the spot... still, concerning...
Docs (physical & mental health) haven't known how I can deal with it...
Try the methylated vitamin b12 if you haven’t already. I’m not even sure how I got better but I did feel so much better after trying some different approaches. There are individuals (not necessarily doctors) in the country who specialize in the MTHFR gene mutation. I guess there are various expressions of that gene. I still don’t really understand it. They studied the gene as geneticists or nurltrition specialists. My brother in law is a geneticist and an expert in that gene mutation, supposedly.
There was a time when I thought I might need to have brain surgery to free the impinged nerve, but I didn’t have to go that route…although it might have helped me in other ways! Maybe I could have asked them to work on my obsessive cumpulsiveness 😆
When it rains and the temps drop quickly, the rain still gives me pain. I have to go to bed…
I have tried the methylated vitamin b12 and it makes me feel, well, weird... which is frustrating ... bloodwork has also shown high b12 in the past which is odd given I'm vegetarian and have a range of mental health issues... but so it goes... we're all individuals after all with unique mind-body compositions ...
That's interesting that your brother has experience in the field. I appreciate the add-on of "supposedly". Speaks volumes.
We can continue our discussion of the physical/mental health issues via email. A lot to unpack and much of it probably isn't helpful or necessary for others to hear about :P
I sent that accidentally as I was trying to edit some of the sentences, so… 🧐
aww, all good
Happy to see John Sibley Williams is hosting an upcoming workshop- he's a fabulous teacher 💜
I'm excited, too!!
Best wishes in your dealing with pain. It's not a pleasant companion.
Glad to find a creative with some words approaching "kind" for the promise of LLMs. Personally, until the LLM companies compensate content creators for their "content," they are high-tech thieves.
The best news I've read is about hyped technologies that have been expected to sideline people have failed again and again. Our luck may continue.