Post by phdstudent on Aug 10, 2015 16:07:42 GMT -8
Hello,
I was recently diagnosed with CES. I experienced a severe herniation at my L3/4 and L5 as confirmed by CT. I also have spinal stenosis and arthritis. Over it's progression, i experienced severe pain in both legs with sciatic pain. Eventually, I was unable to use both legs; I could only move my toes. Toward the end, I had bladder and bowel issues. I had numbness in my saddle region. I had a number of other issues consistent with CES.
After emergency surgery, I regained the ability to move my legs. However, i experience ongoing numbness, tingling and weakness in my legs. I can stand for 10 to 20 seconds before my legs start to fail.
Unfortunately two days later, I experienced postoperative CES due to inflammation around my spinal cord. Subsequently, I lost the ability to move my legs again with exactly the same progressive symptoms and another admission to hospital. Fortunately, after the swelling subsided I regained my initial postoperative functioning.
As time goes by, I notice my symptoms aren't sable. I now get burning pain in my legs at night. I get sharp stabbing pain. When I walk or stand, my numbness and tingling moves up my legs. Is this ''normal' for CES? Do symptoms evolve? I stopped pain medication. It might be that I am beginning to feel it now.
Post by kilg0retr0ut on Aug 11, 2015 4:36:51 GMT -8
Phdstudent, sorry about your situation. What you describe sounds fairly normal for CES. It will take time to really know what your left with. I remember having a rock in my shoe which made it hard to put any weight on my foot. The rock wasn't there, and after about a week it went away. The site has lots of info. on CES, so your unfortunately in the right place. Feel free to ask questions, we'll do our best to help. Mark
Sorry to hear about the recent CES diagnosis but it's good to hear that you've made some recovery. What pain medications were you on? It seems like the pain you're describing is consistent with neuropathic pain.
Thank you for welcoming me to the forums. While in hospital, I was prescribed a number of different pain meds. Unfortunately, I was often given medication without an explanation so I don't know what I have taken. At the time, I was happy for some relief. At discharge, I have dilaudid 2mg every 3 to 4 hours and basic over the counter meds.
The worst pain comes at night between 2 and 4 am. I am woken up by the feeling of being on fire through my legs. I also get electric type shock pain in my thighs. I discovered that ice provides some temporary relief but only while the ice is directly on my feet or legs.
Do you think you still need the Dilaudid? I think you need some kinda medication to help nerve pain. Have a look through this thread and let us know if anything sound like what you're experiencing - www.inspiredsciforum.com/thread/2743/heat-type-nerve-pain
Post by phdstudent on Aug 11, 2015 13:15:03 GMT -8
I keep the dilaudid by my bedside table. I will likely need to take it to manage the pain at night because it interferes with my sleep. Thank you for referring me to that thread. It describes my pain very well.
In the week before my admission to hospital, I was running 70 to 100 km per week. I hope I can get back to running in a year or two. However, I don't know if I will be able to run with burning feet. It's been a very abrupt change. Lots of emotions.
Unfortunately, I am also losing weight quickly. I've lost 10 pounds over the last week. The constant nausea from the pain has reduced my appetite to nil. My energy is very low. Spending quite a bit of time sleeping.
I am very glad I found this forum because most of my health care providers have never seen someone with CES. I was diagnosed with it but I wasn't given any information about it. I am trying to read as much as I can.
Hi phdstudent and welcome to the forum. I too am a CES sufferer but unfortunately I'm stuck in a wheelchair, I can walk with a walker but at my age a chair is a lot easier. I take Lyrica for my nerve pain and it has really settled things down for me. I know exactly where your coming from about the early morning Pain and the stabbing pains, but since I've started on small doses of Lyrica it has really calmed down. I take 75 mg morning and night and it works for me.
Post by phdstudent on Aug 11, 2015 20:36:55 GMT -8
I am having a very hard time trying to understand the sensations in my body. Alongside the burning pain and electric shock type pain, I have very intense discomfort in my legs when I try to walk. The longer I try to walk the more intense the discomfort. When I sit or lay down, the discomfort lingers for a few hours. Based on my experience, it feels like I've just finished a marathon. Lots of fatigue and tingling. In total, I was unable to walk for about one week. Is this nerve pain or muscle atrophy?
At first I thought it was muscle atrophy but it doesn't seem likely that in one week of more or less bed rest, I could go from running 15km without any discomfort to feeling intense discomfort after walking 15ft.
It's like I have an entirely new body. I have to get to know myself all over again.
Hi phdstudent and welcome to the forum. I too am a CES sufferer but unfortunately I'm stuck in a wheelchair, I can walk with a walker but at my age a chair is a lot easier. I take Lyrica for my nerve pain and it has really settled things down for me. I know exactly where your coming from about the early morning Pain and the stabbing pains, but since I've started on small doses of Lyrica it has really calmed down. I take 75 mg morning and night and it works for me.
I am having a very hard time trying to understand the sensations in my body. Alongside the burning pain and electric shock type pain, I have very intense discomfort in my legs when I try to walk. The longer I try to walk the more intense the discomfort. When I sit or lay down, the discomfort lingers for a few hours. Based on my experience, it feels like I've just finished a marathon. Lots of fatigue and tingling. In total, I was unable to walk for about one week. Is this nerve pain or muscle atrophy?
At first I thought it was muscle atrophy but it doesn't seem likely that in one week of more or less bed rest, I could go from running 15km without any discomfort to feeling intense discomfort after walking 15ft.
It's like I have an entirely new body. I have to get to know myself all over again.
The burning and electric shock type pain is definitely nerve pain. Muscle atrophy would only give you a general tiredness sensation in your muscle. I think you should try some kinda nerve pain medication (talk to your doctor first) and see if it helps. I think it will and when it does, you can get back to working out!
We've got a lot of member with CES here so you're in the right place
Post by phdstudent on Aug 13, 2015 13:50:34 GMT -8
Over the last day or so since discharge from hospital, I've experienced episodic recurrence of my symptoms. If I walk around too much then I gradually lose my ability to walk. Numbness and weakness starts with my left leg then moves to my right leg. If I push too hard, I eventually can't put weight on my legs or I fall to the ground.
After my operation, I experienced postoperative CES due to inflammation. I was prescribed steroid anti-inflammatory medication. The inflammation subsided and I regained my ability to walk. I think I might be dealing with inflammation again. With rest, it seems to subside. Is this potentially a chronic issue? Are there chronic inflammatory conditions that can lead to episodic recurrence of CES?