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New to SU. Postlami Syndrone, Sereve chronic painm Help!

Started by Tommy7 on 06/12/2014 10:43pm

Hi, I am new to SU. I need support for my intractable back pain and nerve pain. I am worried what will happen to e if I lose my job and insurance.
I am in my mid-40s. History of LBP and radiculapathy. I had a discectomy and laminotomy 10 years ago for herniated disc L5-S1. After surgery I developed a staph infection and had a debridement of the abscess (down into the disc space). I have had persistent pain since the surgeries, and things have gotten worse every year since the surgeries. I have been through almost all known treatments (discectomy, ESIs, facet block, radio frequency nerve ablation, botox injection for spasms, trigger point injections, acupuncture, massage, TENS and Fenzian, chiropractic manipulation (one of the only things that is somewhat effective in the short term), psychotherapy, guided imagery, meditation, biofeedback, PT, bracing, and various meds (opioid therapy, various muscle relaxers, anti-depressants, anti-convultants, etc.) I am becoming increasingly frustrated by my physicians' lack of understanding of chronic pain and the severity of my neuropathic pain. The nerve pain as been so bad recently. Words cannot describe how horrible it is. The only thing that helps for nerve pain, in my opinion, is medical cannabis (edibles for me), which directly help with both the nociceptive and nerve pain, muscle spasticity, and also really help with mood and sociability. It is ridiculous that cannabis is still a schedule I drug...it clearly has substantial medical benefits. The pain has been so debilitating that I am considering double fusion surgery (I have DDD L3-S1). I am also open to try the spinal chord stimulators. If anyone has experience with Lumbar SCS please let me know. I would love to chat with you. I feel like I am at the end of the road. I get depressed secondary to my back and leg pain. I am out of work and and may lose my job. The prognosis is not good and gravity is not kind; my symptoms will most likely become worse over time. I am having a difficult time coping with this intractable back and leg pain. Some days I am able to go to the store and do very light things; most days I am in such severe pain I cannot even leave my apartment or walk from my room to the kitchen. I have been dealing with chronic LBP and radiculapathy since the 1990s. Hi and please say hello! I need some support. T

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hi I also am new to this site, I have just signed up hoping that at least talking to someone dealing with the same problems will help not only me but others. I have had a long history of back pain and this is the first time I have joined a site. I have had a fusion of 3 and 4 and a couple decompressions stenosis and dealing with ddd. I also am out of work, because of the pain and have insurance. I also am worried about losing insurance it seems they will take your money but have a difficult time paying for std or ltd. praise the Lord I finally am recievng Ltd but took awhile and constantly have to prove I'm in terrible pain beyond being able to work. I noticed allot of what you said seems to match my concerns. I wake up screaming in the middle of the night from the pain in my lower back and from hip to knee down my thighs. It's difficult to explain my outer thighs are numb but the meat feels like it's ripping apart off the bone The skin seems hyper sensitive but numb at the same time. I was laying down yesterday cause the loss of sleep and when I got up my heels of both feet were totally numb. I'm scared to go to sleep and fear I'll wake up paralyzed. I've been denied ss but am still appealing it. I guarantee if they felt one minute of what we go thru they would approve it. I live out in the country appx. 30 miles from a town with help. and just a couple friends come visit me maybe once a week. my pain is getting worse and worse and seems like it's not important to anyone but my wife and I. mostly it feels like I deal with it alone and no-one really cares. so I know how you feel and am sympathetic. I'm on the verge of going to ER but know they will just give me shot and send me home. at least I'm on pain meds but they are expensive, big viscous circle. this is my first post ever on this or any site hopefully can find some friends dealing with same problems and get some support.I have been pleading with Neuro surgeon to see me asap. but don't even call me back when I call them they say when we get info we will call you. and when I call my doc. to send info. they say they've sent it. I'mgoing to call doc today and see if I can get new referral to new neurologist. I can't deal with this pain much longer. :'( I hope things go well for you, it would b nice to hear back from you :-)

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Hi Phoenix,
Thank you of your response. It was my first post also. I'm sorry you are going though this. You are not alone. I totally identify with a lot of what you wrote. It seems like nobody cares. I feel alone and depressed. I'm learning that most physicians are useless. Most don't even understand the complex and serious nature of chronic pain. Many don't want to deal with chronic pain patients because we are difficult to treat. If you find a good doc you are lucky. I agree that if they felt what we felt for even a minute they would approve ss and ltd. I don't know what to do when the pain is so bad. I have a whole list I go through (meds, acupuncture, light walking, distraction, meditation, lidocaine patches, etc). Nothing works when my pain is at its worst (I have had some success with medical cannabis, as I described above. The downside is the price; it is ridiculously expensive. If you have not tried medical cannabis you might want to give it try (methods of delivery include smoking or vaporizing the flower, eating it in various edibles, or tinctures). When my pain is absolutely intolerable I find that it helps. Have you tried Lyrica or Gabapentin for your numbness and nerve pain? I hope today is a better day for you. I am here if you want to talk. I need some support too. T

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Hi i had surgery earlier this week feel pain impraying for the best

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yea i have tried cymbalta neurontin and lyrica none have done a thing for me except make like a zombie!
I've had 3 back surgeries and looking at a multi fusion now I had 1 fusion at 3-4 but had to take it out because a screw was veered off and impinging on a nerve solution had to take it out. I had 1 disk rupture that was another one. now I'm hurting worse than ever I'm asking ho screaming in the middle of the night
with my legs numb except for a nerve that runs from my L2-L3 down my thighs that make it feel the meat is ripping apart and screaming in pain. I have ddd that I think contributes to my condition.I finally got a appt. with Neuro. surgeon next month I just hope I can make it till then. and my wife understand everything I've been thru that helps allot someone who understands :-) hope you have someone to help you through those silent times when you wanna just rip your leg off. I knew this day was coming because he warned me of it when he seen me the last time. he said at some point you are going to need a multi fusion. I was just hoping for later, not so soon good luck and stay strong I'll b here if you need to talk.

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Hang in there Phoenix. Your are lucky your partner is so understanding. I hope you have a good appointment with your neuro next month. Until then, I hope you can find find some relief with your meds and any other modalities and relaxation techniques. Crying is a normal reaction to severe chronic pain and I find that I feel slightly better afterwards (even though it doesn't last that long). Masturbation/sex can help with tension and stress, combat insomnia, and lower blood pressure by releasing endorphins, the body's natural pain killer. Massage too can make things almost bearable. I mention this because for the last 6+ months my pain has been constant and uncontrollable. When the worst pain is coming on I try to breathe and get control of how my body is responding. What do you do when the pain gets really bad? Sending positive thoughts. T

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Hi Marian,
I hope your surgery went well and you are not in too much pain. The first two weeks after surgery really hurt, but it gets better. What procedure did you have? Did you feel any relief when you woke up after the procedure? T

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sorry haven't written, been totally miserable, counting the days as they go by. I try to stay positive at least while my wife is at home as to not drag her down the rabbit hole I'm in. it's strange how when she leaves my emotions change. ( wind up not being distracted, she helps to get my mind off the pain) have you heard of Meralgia Paresthetica? my pain starts just of the center on both sides of my back down my butt, hips to thighs side of knees and left leg goes all the way down my calve. the skin is hypersensitive but the nerve in the muscle is burning and pulses like someone sticks a knife in it. but it's weird cause I have a loss of sensation at same time. when I go to sleep I wake up SCREAMING at its peak. I have a level of a 8 and 9 throughout the day and beyond a10 at night. I've tried sleeping in different positions the least painful is on back with slightly elevated chest and head. if I lay on my side with a pillow between legs the leg I'm laying on is so painful I feel like running to ER. counting the days till the 15th July. are you getting any relief? it's hard not to get depressed cause your stuck at home, can't or don't want to go anywhere. the thought of them cutting the nerve right now is a welcome thought. stay positive is a recurring thought

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something I had not said was that on my thighs there is actual bruising, one on my butt, two on each thigh. also broken blood vessels and swelling. you would think that neurologist would see me immediately. I can't help thinking I might wake up paralyzed, don't want to go to bed knowing I'm going to wake up screaming at some point in the night. and yes I do cry. one cannot help but cry when your in this much pain and feeling hopeless, it seems I'm not taken seriously by docs, like I'm overreacting to my pain, but I can guarantee I wouldn't wish this on anyone. my pain mgmt. doc does prescribe opiods but as you knowthere is nothing that can kill this pain, it just makes your mind have a sense of euphoria.

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Hey Phoenix,
Good to hear from you. Sorry you are having such a rough time. Hang in there. I know what Meralgia Paresthetica is. If you have any weakness in your thigh/leg/groin you should tell your physician immediately. I'm sure you know this already, but Meralgia Paresthetica usually affects the lateral femoral cutaneous nerve--a sensory nerve, which when irritated idoes not cause muscle weakness in the leg (it can cause pain and various sensory nerve pain, like the burning and tenderness you describe (I have that burning down my leg and it is horrible.) The femoral nerve also has many small 'off shoots' and can cause pain on the side, front and back of the area. Have you tried chiropractic? (I realize you are in severe pain. But sometimes chiros can do minor miracles. They might be able to manually manipulate the soft tissues, getting pressure off that lateral nerve.) I hope your physician is also doing tests to rule out other things. Cutting the lateral fem c nerve (sensory nerve surgery) is a last resort I would imagine. It appears to be effective in some case but cutting the nerve could also produce other types of pain. Listen to your docs.That is what I want. I want them to fry the nerve roots (radio frequency ablation) in my spine. I had the procedure 8 years ago but they didn't get the right spot (and my insurance doesn't want to pay for anything) If they do get the right spot than I might be able to get a few months of some relief. This might be an option for you,

I know what mean when you say that you try to stay positive when your wife is home. I try, but bottling things up can make things worse so if a cry, I cry. I sometimes just go back to my bedroom and cry because I don't want my boyfriend to be dragged down. I know what you mean. We suffer so much in silence. Let's be thankful that our partners do not have to deal this with. I'm lucky to have a wonderful, understanding partner. It sounds like you do too. I would be much worse without his support. He is my lifeline to the outside world right now.

My average pain level is 7-8/10. It's worse in the morning and really bad (9/10) by the end of the day. I also sleep on my back with my legs elevated. I can't sleep in any other position. Usually I just can't sleep at all. I went to my primary care yesterday. I don't want to increase my pain meds. they're not really working. Sleep is a big problem for me. Who could sleep with pain levels at 7,8,9/10!? He gave me Amitriptyline for sleep. It is an older antidepressant that is used in lower does to treat the symptoms of chronic pain. It is sedating and blocks some of the pain signal. I still had a terrible time falling asleep, but when I did I slept for almost 6 hours. I haven't slept that long in a while. I woke up in less pain than usual. If you have never taken it you might want to ask your neuro about it. Is bruising common for ME? Does ice help? I hope your day is going well and you are finding some relief. Do you meditate? How do you get your mind off the pain? Sometimes the pain is so bad that distraction techniques and meditation just aren't enough. And the physicians don't understand. I know what you mean about how they minimize the severity of the pain. We are not overreacting. I really hope your pain is better today. I really do care. Nobody could get through this alone. :) T

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