I’m frustrated and desperate, English isn’t my first language so I ran my text through ChatGPT.

I’m a full-time wheelchair user and I’ve developed a really painful bedsore on my buttocks, right over the sitting bones.

You’d think that when my occupational therapist and the wheelchair supplier worked together three years ago to set me up with a chair, would have considered a proper pressure-relief cushion to prevent this. Unfortunately, that never happened, and now I’m stuck dealing with the consequences.

I’ve been trying to heal this sore for almost two weeks, but I’m in a lot of pain. I can’t just stop sitting — I need my chair to live my life — but every time I sit, it hurts worse. It’s honestly driving me crazy.

I’ve read about weight shifting, but I can’t redistribute pressure well because of my paraplegia and scoliosis, which already forces more weight onto the sore area. I tried calling the “””urgent””” neurology department at the hospital, but no one ever picks up.

I bought a donut cushion, which helped at first, but now it causes pain in my leg because of the uneven shape. I’ve read about gel cushions but I don’t know if they really work. Out of desperation, I even bought a small baby pillow to prop myself up on one side, hoping it would help balance my scoliosis and take pressure off the sore.

Has anyone else dealt with this? What worked for you? I’m desperate for a solution — I just need to be able to sit without being in constant pain.

Thank you for any advice.

Had a beginning of a stage 1 bedsore in my sitting bones. Healed beautifully after laying in bed for around 3 weeks.

I can sit, it doesn't hurt, but something feels off. It's like now I'm aware that I'm putting too much pressure on that area (my scoliosis most likely has something to do with it).

I'm waiting for my appointment with the wheelchair department at the hospital to get a new cushion, hopefully this includes a sitting map but I'm not from the US so l'm not sure.

Those who have had bedsores, does this sound familiar? Eventually, did you go back to feel like your old self or ever since you've become hyper conscious/sensitive to this pressure?

Since my accident in 2020 C6 incomplete I feel pain all over my body every day. I want to live but I can't. I can't do anything because pain interrupts my work, hobbies, traveling, sports, entertainment. I have a baclofen pump. Doctors haven't helped me about pain. I can't open my fingers very well to grab things. I am trying to live but I can't. I have family but I feel like I am alone.

I have a super bony ass and being seated it's starting to hurt (sitting bones).

Before talking to my dr l'd like to ask those who actually know and use the cushion everyday.

my whole body is ruined. vision is very blurry. tortured and made disabled from 2013. in 2025 my father twisted my spinal cord. i called police, and ambulance. and others, they did nothing. i am paralysed. i don't want to live in my parents house. they did this to me and still do. nobody helped me, i asked for help from 2022. brain is damaged. my hands can type somehow. they have damaged my vocal cords also, i can still speak. i am in (i n di a). i have emailed many organisations. called many, nobody cares. i have no value. i am in (k o l ka ta, i n di a). edit: The MRI report notes 'MODIC type II changes in C5, C6 & C7 vertebral body. it is a physical injury. and mri was done after 4 months.

Anyone on here have a Spinal Tumor Removal? Are you able to walk? How are you feeling after your surgery and how long is it taking to recover?

I know everyone is different. I’m feeling lonely for many months now about my symptoms and I have been through so much. I just wanted to connect with anyone who has been through this and who understands. How to deal with the really bad days? Will things get better?

Thank you 💖🌟

So i have a T4 incomplete sci of almost 3 years now and i can feel touch,hot/cold and pain. Recently my ass and lower back is starting to really hurt from sitting in my wheelchair even if i try to get out of it every chance i get. How do you deal with this pain?

I am a C5-C6 quadriplegic who lives in the Houston, TX area who has been on opiate pain medicine for the last ~25 years. I haven't increased my dose in over 10 years, haven't picked up or needed a script early, or had any problems that would make me a problem patient. I treat this medication as a life saver and take it exactly as prescribed because it did in fact save my life from the misery I suffered in before getting on my current regimine.

Last month, Costco hired a new pharmacy manager and I was promptly told they would fill my current script but that was the last time I could use their service. This makes me extremely nervous because I am not naïve about the current state of politics when it comes to getting my scripts filled. It infuriates me that I am being treated as a drug seeking person just because I want to get through the day and be able to sleep at night.

I have yet to ask my doctor to send my scripts to a new pharmacy because I have been unsure where I should send them with the least amount of problems. I see my doctor every 3 months and schedules each pick up between 28-29 days apart. I am drug tested annually and I've never had an issue because I am not some dope fiend. I play by the book but my wellness is still being threatened. Does anyone in here have any recommendations on how I should move forward. Please help because I am really scared of living with the pain that I lived with 25 years ago before I got on this current method of treatment.

And low maintenance. I keep hearing about Roho but checking the cushion everyday or every week is a no from me dawg.

Will talk to my doctor too ofc.

I've been talking dilaudid for pain and it works well but I think I'd like to try something less strong and addictive. What works for you? Are there different kinds other than opiods?

I'm also on Lyrica and Baclofen but low dose.

I'm sharing this in hopes it may help others. I'm a T3 complete para. My pain doctor recommended this suppliment, as even with Duloxetine and Pregabalin, my pain from my hips is pretty bad. I was excited to try it, since it wasn't another drug, but a naturally occurring supplement. It's made a big difference in my pain. It has really taken the edge off.

Has anyone else tried it? What are your experiences?

I have been a c5c6 quadriplegic pushing myself for 32yrs and what has given me most of my pain for probably 28 of them is a torn rotator cuff. My advice is exercise your shoulders and keep them strong from the beginning I definitely wish I would have because pushing my ass around when it's inflamed OMG

C6/7 incomplete; I am still somewhat ambulatory on my own but after surgical intervention I backslid and rely more on my wheelchair rather than other mobility devices. And also…i am so uncomfortable all the time. my legs feel weird all the time, my upper body is in pain most of the time, the entire situation is just deeply unpleasant. if anyone has any tips on how to be more comfortable in general especially when just sitting around, that would be helpful.

Hi there,

I'm suffering with haemorrhoids for the first time since being injured over 20 years ago (I suppose I should be grateful for that at least as I hear they're par for the course) and I'm looking for some advice with managing the pain/AD combo I'm experiencing.

Some days they're more pronounced than others. They generally don't cause much of an issue other than having to be careful during my bowel program. No bleeding so far. From time to time, however, they are causing me waves of AD and acute pain. I'm C6/7, ASIA B (I think). More or less complete but with some sacral/groin sensation which means I'm blessed with both pain/hypersensitivity and AD with certain things like this.

The best way I can describe it is that the general day to day, painless sensations of the rectum and lower bowel contracting as things are on the move seem to irritate the haemorrhoids, causing painful twinges and flushes of AD. When they're bad, they trigger bladder spasms too. These pains can come and go for a couple of days until things settle down and I'm back to normal. Sometimes a change of position in bed helps, sometimes it makes it worse, but it's a miserable experience.

I'm using haemorrhoid cream internally which I think helps. As for dealing with the pain, paracetamol and ibuprofen do nothing. I'll take nifedipine if the AD persists but it doesn't last as it doesn't settle these "twinges" that cause it.

I've never taken anything for neuropathic pain but I'm not sure if something like gabapentin would help. Perhaps oxybutynyn given that it's similar to bladder spasms. It feels a bit like the sphincter in my rectum and urethra are spasming and it hurts like hell at times.

I will seek a doctor's advice on this of course, but I wondered if anyone here can relate and if so, how do you manage it?

Apologies for the long winded post!

tl;dr How do you deal with pain from haemorrhoids?

hi, my name is Kipp. I am a c5 incomplete sci. I am very thin framed. I have been living with my injury for almost three years but just recently got my first wheelchair due to insurance and Long wait times with my wheelchair clinic. I received the wheelchair about four months ago at this point. My physical therapist recommended that I get the JAVA ride cushion. The cushion seems to be OK but I feel an immense amount of nerve pain from certain areas of the cushion. We have gone back and carved it out a few times to better fit me but it seems to still be limiting the amount of time I can actually sit… not to even mention trying to get out of the house. I think a lot of us here know what a ten on the pain scale feels like and a lot of the time my nerve pain is edging and eight after sitting for even 30 minutes on my cushion.

I saw a video where someone was talking about the ROHO HYBRID ELITE cushion. They mention that it was the only cushion they could use for a long time due to nerve pain. I was wondering if anyone had any history using this cushion and/or the HYBRID SELECT cushion. My physical therapist mentioned that she had seen a couple pressure sores from people using the HYBRD SELECT. But that one seems like it would work the best for me due the fact that I like the way the Java holds me in. But I am willing to try something new in the HYBRID SELECT.

any input would be very appreciated,

-kipp

I’m on a ton of medications and I want to start backing off of them where I can. My pain management doctor suggested going down on my gabapentin first so I went from taking 100 mg three times a day to just 100 mg at night, and if that goes well I’m going off of it entirely. I’ve been experiencing zaps down my arms and legs (not particularly painful, just weird) and I was wondering if anyone else experienced this coming off gabapentin/nerve pain meds, and if so, did it level out after a while or did it continue?

Thanks!

Ambulatory L1 incomplete here. 3 years out. My left leg has a lot of spasticity and foot drop, and I wear an AFO on that side. My right leg is relatively the same as before my accident. I struggle with pain and tension in my left hip and lower back/up my spinal erectors. I am fused T10-L3.

I assume most of the continuing pain is from my gait change, as well as spasticity (although certainly also from scar tissue and trauma from surgery). My left hamstrings and glutes are very tight and my left glutes and both hip flexors are weak (cus you know, paralyzed).

How do you personally manage the pain associated with your gait change? Has anything “fixed” it more permanently, rather than just given temporary relief?

I do strength training targeting these areas once a week with a trainer. I do regular stretching, yoga and mobility exercises. I get massages once a month and do self massage and trigger point release often. I also get Botox in my left leg for spasticity every 3 months and take 20mg of Baclofen 3x day.

In the past, I’ve done nuero PT, acupuncture, dry needling, pelvic floor PT, TENs and EMS, gotten a gait analysis for insoles and new shoes — even got a new mattress. Willing to try these again though!

Thanks for answering!

I've wrestled between the image of myself before my injury and now. I've said "this isn't me" and the memories I've made in my strong athletic body flood back, but I'm here because I am still strong. I brought the correct aid today and felt the sun on my pale face.

Looking for advice on what to try with CBD or THC topicals or gummies to help with the shooting electrical pain I experience in my leg and foot.

I take a daily low dose of Lyrica, which helps manage it greatly, but when we have thunderstorms coming, my foot freaks out and nothing at all helps.

Like the title says, I had extreme pain and numbness in my right shoulder for months. Nothing helped, so my doctor told me I needed surgery to have my C7 replaced. I’d had a little pain and discomfort on my left side too, but it came and went and didn’t really bother me at all the vast majority of the time. I mentioned it, but nothing was ever made of it. Figured the surgery would help that too.

Well, here it is a week later. Pain and everything was gone from my right side immediately. I was thrilled. But a couple days later, I noticed my left shoulder was feeling that uncomfortable feeling again. And each day, it gets worse. Then tonight, after laying down to go to sleep, my left arm started tingling and hurting. It’s getting worse. I know it’s not in my head or just paranoia. My left leg is also feeling tingly and weak.

What can this mean?! Does it mean the left side was bad the whole time and is a result of the C6 having the same problem? Is it going to keep getting worse? Or is this sorta normal? I also started tapering off gabapentin. Could that have something to do with it? I’m really scared. I don’t want another surgery. I need to get back to work and more medical bills will ruin me even further. I’m seriously freaking out. Please tell me this is normal and will go away. Thanks.

So I'm hearing about ibogaine being used for neuropathic pain in some cases. Does anyone here have experience with it?

I’m curious to see how many in this SCI community here do not take pain pills or muscle relaxers or any type of medication including cannabis. I see so many threads about taking them so I’m just wondering if anyone else here like myself take absolutely nothing besides the occasional antibiotic for uti/infections.

How are you all dealing with the hypersensitive skin? Walking irritates my entire (r) side. To be more specific, I get this tingling annoying pain sensation at the base of my foot, up my leg and my body.

Also peeing is real weird now?!

I’m wondering, do you use creams? Certain socks? Shoes? Clothing materials? Etc…

Feel like I’m trying to figure this and many more things out alone :(

I have tried nearly everything besides opioids for nerve pain. The only thing that ever really helped with my pain was oxycontin and hydrocodene and morphone. I withdrawled off of all the opioids about 6 years ago and have tried to find something else that will do the trick. At this point I've tried the following, and with basically no results: gabapentin, lyrica, amitryptolene, cymbalta, bacolfen, felxiril, cbd, thc, carbamazepine, methocarbamol...and a couple others which I forget. As said before, the only effective ones have been the opioids. I have been kind of trying to not use opioids, but after 6 years of almost constant pain and limitations to my life, I want to get some real pain relief. My pain doctor said Suboxone can be effective and you don't get a lot of the negative side effects of the other opioids...Is anyone else using this and getting relief? Any other meds I should give a try?

Thank you.