Adhesive Arachnoiditis & the Effects on Walking

Posted by louisagjafrwi923 @louisagjafrwi923, Oct 6 9:42pm

Has anyone have adhesive arachnoiditis. I've had it now for a number of years and it's starting to affect my walking

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@gldburg92jeep

I've stopped PT but I suppose I need to go back. I am thinking of that tree. You gave it such as a visual give me a smile. Yes a tree. Thank you. I hope you get to walk to that tree again. If not there are always alternative ways of travel.
Thank you for that.

I miss going into the woods watching wildlife and such things people take for granted. I watch TV seeing people do things I know I will never do but as my surgeon told me when I was 16 years old , your never going to be a ballerina ! I feel grateful for the days I've had and want to say thank you for sharing this. Good luck to you. I'm on my own journey of acceptance and not giving up but I'm going to fight as long as I can. As some days are harder than others. I also grew up on a farm . Not that big but good memories.

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Hi-
Imagine that oak tree in your mind‘s eye…it was alive 100 years before the Declaration of Independence was ratified. You measure trees for age at 8 feet high above ground level. At 8 feet, the oak is 32 feet around! It is the center of my life— it literally centers me to my life as a young boy in NE Ohio.
We used to find frog eggs in the pond beside it, and deer were a common sight. When I was a kid, the fields were plowed for planting in late April/early May. Before they were disced, we.made Dad wait for a good rain— then we would search the fresh field for Indian Arrowheads! We found many, and learned that the Pontiac, Delaware, and Maumee Tribes all had settlements there at one time. Enough good memories!!

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@archie2

Hi-
Imagine that oak tree in your mind‘s eye…it was alive 100 years before the Declaration of Independence was ratified. You measure trees for age at 8 feet high above ground level. At 8 feet, the oak is 32 feet around! It is the center of my life— it literally centers me to my life as a young boy in NE Ohio.
We used to find frog eggs in the pond beside it, and deer were a common sight. When I was a kid, the fields were plowed for planting in late April/early May. Before they were disced, we.made Dad wait for a good rain— then we would search the fresh field for Indian Arrowheads! We found many, and learned that the Pontiac, Delaware, and Maumee Tribes all had settlements there at one time. Enough good memories!!

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I'm in sw va. It's a small town. Coal was here bur most are out of business now. Lots left wo jobs. It's sad. I pray for you Archie. Hope you feel better. I had a rough night last night. It was rough. Could get in a position that I vould relax my pain to sleep.
There was a huge one on my property too but it got cut bc it was top heavy. Scary at times.

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@laurenseavertson

I've had AA for 20 years? it wasn't too bad, until very recently. Unrelenting neuropathic pain. It can affect your ability to walk, causing paraparesis (weakness etc) I am now barely able to walk with a walker & can't feel my legs (for the most part) Exercise is paramount. Staying as active as possible is advised. Most people can walk, but guess i have extreme case. Every day i wake up, some new symptoms & i am scared to death of being back in a wheelchair again. I was paralyzed by MRSA from the neck down 17 years ago. Spent 16 months in hospital & rehab. Now this! I have lost many years of my life & all my savings. Am on Medicare & secondary Medicaid This doesn't help with getting doctors to treat me. AZ is a great state, if u are on Medicaid. Everything medical is free for me, as i am low income. Exercise as much as possible & i hope u remain walking! Lauren

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I have that fear also of being back in the wheelchair. I've noticed I can't get my back bone near my butt to relax at night to sleep , any suggestions ? I also have been waking up to have to lift my left leg with my hands to get it out of bed while sitting til I get circulation back in it to get up. It's like lifting a dead weight. These new symptoms are worrying me bc I remember these from before I had surgery . If any one knows of ways to relieve the pain in this area to sleep , even lying on my sides isn't relieving it , it would be greatly appreciated. Thank you Sherry.

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@gldburg92jeep

I have that fear also of being back in the wheelchair. I've noticed I can't get my back bone near my butt to relax at night to sleep , any suggestions ? I also have been waking up to have to lift my left leg with my hands to get it out of bed while sitting til I get circulation back in it to get up. It's like lifting a dead weight. These new symptoms are worrying me bc I remember these from before I had surgery . If any one knows of ways to relieve the pain in this area to sleep , even lying on my sides isn't relieving it , it would be greatly appreciated. Thank you Sherry.

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Hi
Cylobenzaprine is a powerful muscle relaxer and has soporific effects as well. I don’t know your medical regime, but maybe….
Regarding your left leg… if you live alone and have no one to watch you sleep, I would recommend a sleep study it could be that you are putting yourself in positions that are causing your symptoms. For example, I sometimes allow my right leg to hang off the right. Side of the bed— this can be very painful when I awaken. You could be doing something like this as you sleep. Be well, Archie

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@archie2

Hi
Cylobenzaprine is a powerful muscle relaxer and has soporific effects as well. I don’t know your medical regime, but maybe….
Regarding your left leg… if you live alone and have no one to watch you sleep, I would recommend a sleep study it could be that you are putting yourself in positions that are causing your symptoms. For example, I sometimes allow my right leg to hang off the right. Side of the bed— this can be very painful when I awaken. You could be doing something like this as you sleep. Be well, Archie

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Archie , yes I have in the past but lately I try to sleep in center of bed just for that reason knowing how that felt waking up to that feeling. I feel like I am sleeping on a board. Just got a new matress and bed to downsize from a king but the queen is great size that I can get my walker right up beside bed and it more room for movement. I sleep with numerous pillows to put between my legs and support my back and shoulders . I'm sure you can relate , I can't take muscle relaxers due to so much weakness. I'd be afraid of falling , and breaking something besides my foot ( 4 bones ,but supposedly healed) it still gives me arch pain.
I have slept with those doughnut pillows only it's painful in my lumbar.
Yesterday my good right leg was showing numbness and and couldn't take a step but thank God I seen it wasn't moving before I went forward or would have been in floor face first. I just started to get up and looked down, it wasn't moving as hard as I tried , I'm really paying attention at all times bc just bc you think it's moving , it may not be due to those signals getting lost in translation to my feet.

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@gldburg92jeep

Archie , yes I have in the past but lately I try to sleep in center of bed just for that reason knowing how that felt waking up to that feeling. I feel like I am sleeping on a board. Just got a new matress and bed to downsize from a king but the queen is great size that I can get my walker right up beside bed and it more room for movement. I sleep with numerous pillows to put between my legs and support my back and shoulders . I'm sure you can relate , I can't take muscle relaxers due to so much weakness. I'd be afraid of falling , and breaking something besides my foot ( 4 bones ,but supposedly healed) it still gives me arch pain.
I have slept with those doughnut pillows only it's painful in my lumbar.
Yesterday my good right leg was showing numbness and and couldn't take a step but thank God I seen it wasn't moving before I went forward or would have been in floor face first. I just started to get up and looked down, it wasn't moving as hard as I tried , I'm really paying attention at all times bc just bc you think it's moving , it may not be due to those signals getting lost in translation to my feet.

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Great that you are hyper aware that what you feel may not be what is!! Yes, be very careful until your signals are consistent. Seems obvious, but these are quality of life recommendations!!
Now if we could just find a cure for arachnoiditis! Archie

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@archie2

Great that you are hyper aware that what you feel may not be what is!! Yes, be very careful until your signals are consistent. Seems obvious, but these are quality of life recommendations!!
Now if we could just find a cure for arachnoiditis! Archie

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Amen. Wish and pray for more Dr's to study this and research it bc it's a disease that makes you feel crazy describing it and also living it. There aren't many who have even heard of it. My primary was the 1 who read this and went you are my 2nd case. She said she had studied this and now understands more about why I feel the way I do.

I was shocked until I went home and googled this then I cried but I was so grateful for a diagnosis FINALLY. Archie speaking w you makes me feel good bc you can relate. Thank you so much. Sherry.

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Sherry-
I hope you’ll stay in touch. We all have our ups and downs— sharing with people with common experiences helps. Sometimes I feel so tired about fighting it all, and then I hear about someone who is dealing with more than I am. Thanks for your reply. Archie

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