live without pain

On Aug 3, 2003 I was hit by a car while training for a bicycle race. My spinal cord was partially severed at T-9. This is known as an incomplete spinal cord injury. I have VERY limited ability to move some muscles in both legs. For example I can wiggle two twos on my right foot. I have come to terms with not being able to walk. Life in a wheel chair is different and hard at times. Life is hard for everybody though. I certainly have it better than most.
My problem is chronic pain. I suffer from two different kinds of pain related to my spinal cord injury.
1. Nueropathic pain in both of my legs. Essentially from my thighs down it feels like both of my legs are waking up from being asleep, and that someone has given them a good punch to really activate that sensation, on top of that they feel as if they are in a vat of boiling oil. The electric burning tingling is always present and it demands my attention constantly.
2. I have a sharp stabbing pain that is episodic right at the transition zone between the part of my body below the injury and that above. This pain starts in my back and radiates out along my ribs. The episodes are brief maybe 45 – 90 seconds but they happen several times a day. They are white hot attention getting. I can not think, or breath or do anything but freak out because of the pain.
I live in a drug induced haze: Fentynal, Lyrica, Percocet, Baclofen. Recently we started pumping morphine directly into my spinal fluid via my Baclofen pump.
Unfortunately I have made a deal with the devil and I don’t think either side of the deal is good for me, like most deals with Satan.
To get enough Baclofen and Morphine into my spinal fluid to do any good I loose all tone in my legs, and I can’t trust my experience of the world. I am sure that the drugs make me experience the world in way that is markedly different than the others around me. But even with these high doses I don’t have anything approaching pain relief.
I don’t know what to do. I need to be out of pain to think straight so I can work. I fear that I will become a drooling vegetable if I get enough drugs to be out of pain.
I hope that the medical community can come up with something soon to help those of us with SCIs.

I have had chronic back pain for 8 yrs and chronic neck and knee pain as well and I really would like to get to the bottom of it or at least feel a lot better. I feel like my pain was caused by injuries ( car accident and being a massage therapist for yrs)but I seem to have a lot of symptoms coming up lately that mock auto immune problems as well. I have been around the map as far as Doctors and medicine and I just want a little break.

I have been fighting Fibromyalgia day and night for the past 2 years. Pain is the constant thing here. Would like to live pain free would be my dream.

I’m resigned that I will never live without pain. The best I think I can shoot for is to manage my pain. I think that’s a good goal.

i cant live without pain, its all i kno wat to do. without pain i would be lost…im in so much pain right now, that im drowning in it. and i dont care, im not trying to swim out of it…

This goal is not going well. Pain is getting worse and led to an ER visit today. My legs are getting pretty numb and I’m not moving around to great. Emergency MRI was negative, of course. At least the doc was compassionate enough to give me some pain meds to help me get through the next few days. Should make finals interesting, though. I’m a realist and don’t think I’ll ever be without pain. I just want to find a way to manage it effectively.

Am out of hospital now. The surgery went ok, but as for the diagnostic part of it… they could not find the source of the pain. Often with pelvic pain in women they just can’t. I might have to get to the point of giving up on this goal and accepting that this is just the way it is. Things could be far worse.

I did get this balloon while I was in there though… Bonus!

That surgery (partly diagnostic, partly corrective for a known problem) that I mentioned ages ago has finally come up. I’ll be in hospital in about 6 days time (the 13th Nov’). My birthday is the 22nd, so I don’t know how lively I’ll be for that… but that’s fine with me just this once, since I’ll just be happy this waiting game is over.

It’s probably only going to be a 20 minute procedure if all goes ok. They probably would have preferred me to be in and out the same day if I didn’t live a fair distance out of the city (travel wouldn’t be good afterwards).

Gosh I hope they find the pain something really simple that they can correct while they’re in there though. My money is on endometriosis, as it seems more like that all the time, even though none can be seen on scans. Not a great thing not have, but it’s better than anything more sinister.

4 years ago I had everything. Fantastic job (which i LOVED), great salary, great home. Happy, healthy and plans for my future. I started to get really ill with no one understanding what was happening. Now I’m in pain 24 7 .I have Fibromalgia Syndrome (FMS) alongside 4 other conditions. In the Uk FMS seems to be dismissed as ‘all in the head’ or a nervous complaint, or that you are shirking. I take around 30 pills a day – mainly for pain. I HATE not working. I miss the buzz, the people. I feel like I’m not ‘me’. ‘Me’ is still there inside, but in a straight jacket, unable to do much and always exhausted
I know I’m still alive, and can see,hear and talk, but I miss life…..... Sorry if this sounds down, I’m really a quite positive person but at times its too much :)

On August 19, 1998, I sprained my left ankle playing volleyball in highschool. I was 15. A few days later on Sept. 1 1998, I was on crutches going to class when I slipped on a puddle in the hallway (it had been raining and the school’s roof was leaking). Since then I have hurt. First it started out as pain that was too bad for just a sprained ankle. When I fell I thought I had crushed every bone in that foot. Of course I had to land on the sprained ankle (3 times to be exact) to try and catch myself. Immediately my foot turned blue and purple, and so did my toe nails. I was wearing an air cast for the sprain, and I had to rip it off because it felt like it was crushing my foot. On Sept. 20, 1998, I was diagnosed with Reflex Sympathetic Dystrophy. Don’t let the name fool you, it is not a disease that exists in your head. The doctors now refer to it as Complex Regional Pain Syndrome II. This is something you can get from a bee sting, cat scratch, or if a doctor nicks the sympathetic nerve during surgery. You can also get it from sprains and strains. I spent the entire month of October 1998, getting nerve blocks. I had 6 sympathetic blocks, 3 epiderals, and 1 sciatic block. It was not fun. At the time the blocks did not reduce my pain, they made it worse. But they did raise the temp. of my foot. My injured foot always stayed ice cold and was blue and purple mottled. I then started feeling the pain shooting up towards my knee, and I noticed that things didn’t feel the way they should to my hands and fingers. Soft things were painful to touch, some of my fingers were going numb. During this time my mother had been in contact with a neurologist, and she said that RSD could spread and that I need to be admitted to the hospital for aggressive physical therapy. (That is doctor speak for TORTURE) My left leg and both my hands were affected now, they hurt all the time and were hypersensetive. I spent 6 weeks in the hospital for therapy, I was put on a variety of meds. Methadone 85 mgs and morphine 220 mgs, for pain alone. But I still hurt. I could barely function, but I felt everything. Vibrations hurt, wind hurt, I found soft touches to be intolerable to the point where I would vomit. During the 6 weeks I was there, the nerve damage spread up my left leg, to both hands, up both arms, down my back, and down my right leg. By Thanksgiving of 1998, I was in full body pain (except for my chest and abdomen, and my ass, thank god).
So I have been spending the last 8 years battling this. Since then I have also been diagnosed with fibro. All of this from a slip and fall