In constant pain for almost 18 years

[johnr]

I am 58 and have had constant, invisible pain in my right hand and arm since June 2004 from Transverse Myelitis. I had a relapse 6 years ago today and stopped walking for about 3 days, then regained my ability overnight. I've tried everything I know to try but it's still like I bang my funny bone every thirty seconds. I always tell people who ask that I'm not currently suicidal but do reserve the right. I worry most I'll end up not able to walk again, in constant pain and eventually forgotten in some public facility. Is there anybody out there facing a similar situation, just need some kindred spirits. All the best to you, and every one of us

 

[Sherri]

I'm sorry for your pain, have you talked to your doc about stronger pain meds? If so any of it helped? Opioids can be effective but also addictive. I wouldn't recommend this path if your doc doesn't. But I know some cases where it have helped people.

 

[WhiteRabbit]

I am 58 and have had constant, invisible pain in my right hand and arm since June 2004 from Transverse Myelitis. I had a relapse 6 years ago today and stopped walking for about 3 days, then regained my ability overnight. I've tried everything I know to try but it's still like I bang my funny bone every thirty seconds. I always tell people who ask that I'm not currently suicidal but do reserve the right. I worry most I'll end up not able to walk again, in constant pain and eventually forgotten in some public facility. Is there anybody out there facing a similar situation, just need some kindred spirits. All the best to you, and every one of us

I'm sorry you're going through this. I know a bit about transverse myelitis, and it sounds like a nightmare. Does something like Lyrica help? Are you in a pain management program?

 

[_Seeking]

I'm sorry for what you are going through. I have Complex Regional Pain Syndrome which causes constant pain in my legs and for a time I was not able to stand for more than 10 minutes a day. I got my mobility back but it is progressing and with other physical problems due to hEDS, I will likely lose my mobility. I don't know much about Transverse Myelitis, but it is so scary this fear of having to be completely dependent on others.

 

[johnr]

I'm sorry for your pain, have you talked to your doc about stronger pain meds? If so any of it helped? Opioids can be effective but also addictive. I wouldn't recommend this path if your doc doesn't. But I know some cases where it have helped people.

I've tried 15 or so different prescription medications but it seems like the pain is constant and it's how I revolve around it that matters. Only thing that has ever helped are THC edibles mostly for sleep. Problem is now the weather is cold, I'll take 100mg of THC and it won't help a whole lot with sleep but I'll be groggy the next day.

I'm sorry you're going through this. I know a bit about transverse myelitis, and it sounds like a nightmare. Does something like Lyrica help? Are you in a pain management program?

Transverse Myelitis is a kissing cousin disease to MS. MS is a lesion on the brain, TM is one on the spine. I've tried Lyrica with no effect. Actually had a hallucination in 2016 while taking a cocktail of 5 different prescription medications, and resolved then to wean off and try other avenues.

 

[Sherri]

I've tried THC drops to wean off opioid pills around 6 months ago, was doing so well, it was like a miracle. Not even a sign of pain or WD. But on day 17 I've relapsed back.

 

[johnr]

I'm sorry for what you are going through. I have Complex Regional Pain Syndrome which causes constant pain in my legs and for a time I was not able to stand for more than 10 minutes a day. I got my mobility back but it is progressing and with other physical problems due to hEDS, I will likely lose my mobility. I don't know much about Transverse Myelitis, but it is so scary this fear of having to be completely dependent on others.

I was unable to drive for two months in 2021 due to a seizure disorder caused by Transverse Myelitis. It was horrible, and I can't imagine not being able to walk. All the best to you, and every one of us

 

[johnr]

I've tried THC drops to wean off opioid pills around 6 months ago, was doing so well, it was like a miracle. Not even a sign of pain or WD. But on day 17 I've relapsed back.

Sorry to heart that, hope you can find something that helps.