I'm paralyzed from the waist down. 2 years ago I got a pressure sore, which took 3 months to close up. It's remained closed but since then I haven't been able to sit without shooting pains in my tailbone and sit bones. I haven't been able to figure out why this is happening and neither is any doctor able to figure it out.
I now spend all of my time in bed, switching from side to side. If I sit it can't be for more than 10-30 minutes, and if I sit for a total of over an hour a day the pain is so horrible that I won't sleep for the night
Does anyone have any ideas of what this could be or any similar experiences?
I have a similar, but much less intense experience. I was able to lie on either side, right or left, after my accident, and for the next 8 months. Then, an aide sat me in the shower on a seat which had no sides, and left me unattended. (She was likely on her cellphone.) While I sat there, I leaned against the only support,...the plastic back of the seat,...and it BROKE OFF! Yes, I watched my one leg go up in the air as I fell backwards onto the tile floor onto my left buttocks. That did, at least, get the aide’s attention, and she reported it. I didn’t think anything was broken. But now, over four years later, I can barely lie on my left side in bed due to pain in that hip. Is there some strange non-healing phenomenon regarding not healing after an injury to a paralyzed limb?
Post by catheterboy on Oct 9, 2019 10:11:08 GMT -8
This is so sad I really feel for you. I have had periods like this with pain but it's settled down again after a few weeks. My worst lasted about three weeks. The truth of the matter is that the ability to be able to sit is so vital for any kind of a normal life. If you cannot sit you can't go out you can't travel you can't go shopping or on holiday it's terrible. I wish you all the best in getting on top of the pain I really do. Sorry I can't offer a solution it's just flair ups when I am so bad. Keep banging on the doctors door.keep phoning the consultants secretary just don't give up. There must be a solution. Take care.
I have a similar, but much less intense experience. I was able to lie on either side, right or left, after my accident, and for the next 8 months. Then, an aide sat me in the shower on a seat which had no sides, and left me unattended. (She was likely on her cellphone.) While I sat there, I leaned against the only support,...the plastic back of the seat,...and it BROKE OFF! Yes, I watched my one leg go up in the air as I fell backwards onto the tile floor onto my left buttocks. That did, at least, get the aide’s attention, and she reported it. I didn’t think anything was broken. But now, over four years later, I can barely lie on my left side in bed due to pain in that hip. Is there some strange non-healing phenomenon regarding not healing after an injury to a paralyzed limb?
Sorry to hear you went through that.... maybe it is some unexplained phenomena? I wish I could figure it out. And yea I do have a roho
This is so sad I really feel for you. I have had periods like this with pain but it's settled down again after a few weeks. My worst lasted about three weeks. The truth of the matter is that the ability to be able to sit is so vital for any kind of a normal life. If you cannot sit you can't go out you can't travel you can't go shopping or on holiday it's terrible. I wish you all the best in getting on top of the pain I really do. Sorry I can't offer a solution it's just flair ups when I am so bad. Keep banging on the doctors door.keep phoning the consultants secretary just don't give up. There must be a solution. Take care.
I’ve never tried putting something “else” inflatable on top of my Roho cushion. It might not work at all, since it will probably just sink into the Roho cushion. But on the off-chance that it could lift your worst sore spot out of harm’s way, here’s my idea. The Duro-med Rubber Inflatable Seat Cushion Ring costs $13.99. And there are similar ones advertised as low as $9 online. I ordered two of the Duro-med recently,...one for me and one for a friend who has a pressure sore on her bottom. But we haven’t used them yet.
My experience is really quite different as I am walking, and my diagnosis sounds like CES-I. However it sounds quite familiar in sympltoms. Pain was just horrible for 5 months while sitting and standing. I was told by dr it was neuropathic pain, that there was no hope for me ...but neighther gaba, nor lyrica have helped. I had to be on Tramadol and diazapam constantly. And used a pillow plus a neck pillow underneath my sitting bones. Based on drugs which did not help, I assumed that part of that pain was not neuropathic, and that ended up true (fractured and dislocated tailbone added to my pain). So steroid and local anaestetic injections into tailbone gave a little relief. Now I am trying to go on without meds if can, but I can not go even a day without massage and water therapy, exercises, stretching.
What meds have you already tried for that issue? Are there any issues with your tailbone, or rectum which can add to your pain, while sitting? Are you having physical therapy on a regular bases?
I’ve never tried putting something “else” inflatable on top of my Roho cushion. It might not work at all, since it will probably just sink into the Roho cushion. But on the off-chance that it could lift your worst sore spot out of harm’s way, here’s my idea. The Duro-med Rubber Inflatable Seat Cushion Ring costs $13.99. And there are similar ones advertised as low as $9 online. I ordered two of the Duro-med recently,...one for me and one for a friend who has a pressure sore on her bottom. But we haven’t used them yet.
I have thought of that before, but I thought it might be difficult to transfer onto... Maybe Ill just order one anyway, it can't hurt to try out. Thanks for the suggestion. And also I do take kratom before sleeping, it does help for a short while. But I noticed if I take it too often it actually makes the pain worse, so I limit it to 3g once a day
My experience is really quite different as I am walking, and my diagnosis sounds like CES-I. However it sounds quite familiar in sympltoms. Pain was just horrible for 5 months while sitting and standing. I was told by dr it was neuropathic pain, that there was no hope for me ...but neighther gaba, nor lyrica have helped. I had to be on Tramadol and diazapam constantly. And used a pillow plus a neck pillow underneath my sitting bones. Based on drugs which did not help, I assumed that part of that pain was not neuropathic, and that ended up true (fractured and dislocated tailbone added to my pain). So steroid and local anaestetic injections into tailbone gave a little relief. Now I am trying to go on without meds if can, but I can not go even a day without massage and water therapy, exercises, stretching.
What meds have you already tried for that issue? Are there any issues with your tailbone, or rectum which can add to your pain, while sitting? Are you having physical therapy on a regular bases?
I tried gabapentin and oxycodone. I take kratom now but have to limit it, it will only last for 2 hours and I take it right before sleeping. Weed helps but it causes me to be so dizzy that I cant function so I also use that with kratom before sleeping.
I noticed my tailbone is crooked, but never thought that could be the issue? Maybe it is? But I also get the pain around the sit bones
I can't sit long enough in a vehicle to get to a physical therapy office
My coccyx is dislocated after fracture, it is hypermobile and goes directly into rectum when I sit. It also pulles on ligaments and muscles. To my surprise it took me almost a month or a month and a half to figure out if pain was from the coccyx too, as pain was everywhere. And my tailbone was completely dismissed by my drs... Rectal exam and 2 positions of xrays (laying down and sitting) as well as diagnostic blocks were the only way it was possible to say it was tailbone. Since I started working in that direction, I am taking less painkillers than I did before. So I guess it is always worth to search for course even when drs totally ignore you...
Kratom and weed - illigal in my place of residency.
My coccyx is dislocated after fracture, it is hypermobile and goes directly into rectum when I sit. It also pulles on ligaments and muscles. To my surprise it took me almost a month or a month and a half to figure out if pain was from the coccyx too, as pain was everywhere. And my tailbone was completely dismissed by my drs... Rectal exam and 2 positions of xrays (laying down and sitting) as well as diagnostic blocks were the only way it was possible to say it was tailbone. Since I started working in that direction, I am taking less painkillers than I did before. So I guess it is always worth to search for course even when drs totally ignore you...
Kratom and weed - illigal in my place of residency.
Sorry to hear that, that also sounds painful. Is there a way to fix it?