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Spinal Stenosis & Degenerative Discs: Long-term use of epidurals

Posted by virtuous69 @virtuous69, Oct 17, 2016

Hi signed on with user name victorious. But there are many days I'm in bed alot and I just want to cry and have pity party. I need some positive help with my spinal stenoisis and Irritable bowel Syndrome not to mention Firbromyalgia and other stuff that goes with. I'd like to have positive feed back, but also there my main question is about epidurals. I've had several which helped for about 3 weeks (guess I thought, gee I have some energy so go do a few things I couldn't before) a. My main question in low back degenergive back and mid thoracic spinal stenosis and thinking about another epidural. However research has told me these spinal injections are not good for you in the long run. I do go to PT for muscle knots., am stressed with aging husband and don't get the exercise I need. I want to be positive but some days I really need to tell someone.........I hurt.

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allisonsnow | @allisonsnow | Feb 13, 2017
In reply to @sandytoes14 "@virtuous I have spinal stenosis, DDD, osteophytes, arthritis and Fibro. I have had many rounds of..." + (show)
@sandytoes14

@virtuous I have spinal stenosis, DDD, osteophytes, arthritis and Fibro. I have had many rounds of epidurals. I found them to be helpful. A good pain management doctor will limit the number of injections per year. My doc had a limit of 4. After the first 2 rounds, I didn't need any for another year. There have been no long term side effects. Short term, I felt similar to taking oral prednisone ( the 5 day pack) a bit bloated, tired, and flushed.
It's ok to be frustrated and vent! I don't think any of us can be positive all the time, but it does help. So many folks on other sites wallow in what they can't do. Here in the chronic pain forum, you will find helpful, understand, and kind folks. I'm glad you are here!

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I agree @janetdh you can't stay focused on the pain. Finding how to live with the new life pain has carved out for us can be a long road.
I went to the chronic pain clinic at Mayo several years ago (don't know if they even still have it) , it did help me adjust and gave practical advice. When we were in group discussing pain and the sadness we were feeling and how to express that to other people (or not) I drew the comparison to grief, I was grieving the loss of who I had been before PAIN without having any idea who I was now or who I could be.
I was no longer the "fun gramma" going hiking and on adventures in the woods. I did eventually learn new ways to be the "fun gramma" but I often reflect on what a different person I was before. some of the changes have been for the good, even after getting cancer, I am calmer and more accepting. I am more proactive in all areas of my life especially my health. I consciously work at building memories with my son and 5 grandsons (two of which I wasn't supposed to live to see) The less positive changes is that I do pretend a lot ! My husband just feels sad and helpless when we talk about it or he sees me suffering so we don't talk about it and I act like I am fine. One of my closest friends I fear I have lost because she just can't deal with the cancer diagnosis and the knowledge there is no cure. Since she struggles with her own feelings she has chosen to stay away and not face it.
I have tried to make clear to all my friends and family that I AM NOT CANCER I am still me !!! There are a lot of things we can do and talk about without ever discussing IT. Hard to ignore it totally as I am on oxygen 24/7.
It doesn't seem fair we have to lose friends on top of everything else. I get angry and ask myself if I can deal with it why can't they? But then I remember how hard it is and that I love them and the anger fades.
You sound very grounded I am sorry you have to deal with so much pain, try to stay connected to the people you love.

REPLY
janetdh | @janetdh | Feb 13, 2017
In reply to @sandytoes14 "@virtuous I have spinal stenosis, DDD, osteophytes, arthritis and Fibro. I have had many rounds of..." + (show)
@sandytoes14

@virtuous I have spinal stenosis, DDD, osteophytes, arthritis and Fibro. I have had many rounds of epidurals. I found them to be helpful. A good pain management doctor will limit the number of injections per year. My doc had a limit of 4. After the first 2 rounds, I didn't need any for another year. There have been no long term side effects. Short term, I felt similar to taking oral prednisone ( the 5 day pack) a bit bloated, tired, and flushed.
It's ok to be frustrated and vent! I don't think any of us can be positive all the time, but it does help. So many folks on other sites wallow in what they can't do. Here in the chronic pain forum, you will find helpful, understand, and kind folks. I'm glad you are here!

Jump to this post

I really like how you talked about grieving the person you had been before pain and the journey of finding who one is now and who one could be. I found that I have stayed away from my professional relationships--so many emotions involved there. And have a friend that just couldn't understand that my "recovery" wasn't "normal." It hurt. Think I may still be grieving that person that was and am beginning to explore who I can be. My son and our four-legged family member have been my biggest blessings--unconditional love.

REPLY
allisonsnow | @allisonsnow | Feb 13, 2017
In reply to @sandytoes14 "@virtuous I have spinal stenosis, DDD, osteophytes, arthritis and Fibro. I have had many rounds of..." + (show)
@sandytoes14

@virtuous I have spinal stenosis, DDD, osteophytes, arthritis and Fibro. I have had many rounds of epidurals. I found them to be helpful. A good pain management doctor will limit the number of injections per year. My doc had a limit of 4. After the first 2 rounds, I didn't need any for another year. There have been no long term side effects. Short term, I felt similar to taking oral prednisone ( the 5 day pack) a bit bloated, tired, and flushed.
It's ok to be frustrated and vent! I don't think any of us can be positive all the time, but it does help. So many folks on other sites wallow in what they can't do. Here in the chronic pain forum, you will find helpful, understand, and kind folks. I'm glad you are here!

Jump to this post

Thanks Janetdh, it was a long time before I came to terms with that and I still have my sad times. I was put on oxygen and then taken off AND then put back on for what I knew would be for good and I can still remember how after the techs left I collapsed next to the concentrator and cried like a baby. I would be tied to this cord or a tank forever but eventually I adjusted and occasionally I forget about it (until I look in the mirror). I have even plugged it in out in the garage so I could still garden. I can hear what you are saying about work (I think) I really miss working and the people there. You will find the new you just be open to all new possibilities.

REPLY
jjwest | @jjwest | Feb 14, 2017
In reply to @sandytoes14 "@virtuous I have spinal stenosis, DDD, osteophytes, arthritis and Fibro. I have had many rounds of..." + (show)
@sandytoes14

@virtuous I have spinal stenosis, DDD, osteophytes, arthritis and Fibro. I have had many rounds of epidurals. I found them to be helpful. A good pain management doctor will limit the number of injections per year. My doc had a limit of 4. After the first 2 rounds, I didn't need any for another year. There have been no long term side effects. Short term, I felt similar to taking oral prednisone ( the 5 day pack) a bit bloated, tired, and flushed.
It's ok to be frustrated and vent! I don't think any of us can be positive all the time, but it does help. So many folks on other sites wallow in what they can't do. Here in the chronic pain forum, you will find helpful, understand, and kind folks. I'm glad you are here!

Jump to this post

HI janedth,
Talk about how a person never knows what they say can mean to someone else they don't even know. Well, I am that person. Your sharing about grieving about who you once were and staying away from co-workers and friends, is something I have struggled with and didn't really understand why, and your comment hit home for me. Thank you! Now I can process this and do something about it. I grieve that I cannot travel, or play with my grandchildren, and visit my children because of inability to ride very far or drive. Anxiety overcomes me sometimes, i had meds for that...thank God! but I still yearn for days that I was active, I was very athletic and could do justa bout anything I wanted to, and excelled in a lot. So now I try and mostly succeed to be glad that I am and I figure out how to do things a different way. Finding who you are??? Do we ever really know for sure?? I know that I have found peace and I hope that for you.!
PEACE & LOVE ...JJ

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