Back Pain and living life

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wikaway

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oh boy do I relate to you. I have 2 children 2 dogs 3 cats and a husband. I used to be very active
I feel like my life has been ripped out from beneath me. I found out the hard way that narcotics don't work. Last October I went to a center to get off LA morphine. It made me so depressed and I didn't know that by taking meRAB you actually develop more pain receptors in your brain which means taking more meRAB!I would never recommend a fusion. I am so sorry I had it, I was desperate for pain relief. I have had epidurals, ablations. You name it. the only relief comes when I get in a pool. For some reason being in the water gives me instant relief of back pain!!! Hang in there, I know how difficult things are but believe me, I don't know if a fusion is the answer. I saw something about injecting some material into the disc which is actually inside a balloon inside the disc. This procedure looked more promising. It sure beats having screws and roRAB in your back. I feel your pain but take your time to research Mary
 
I have DDD, two discectomies on L5-S1 and am left with what doctors are calling permanent nerve damage.

My back is very unstable and stiff. I can deal with this pain though. It is not contant and doesn't keep me from doing daily things. The sciatic pain is something different though. I am not able to sit at my desk for more than 20 minutes, drive any distance in a car, walk long distances.....without my nerves flaring up BIG TIME. I end up being in tons of pain that no pain meRAB will touch.

My life is being affected BIG TIME. I can no longer work. I can barely keep up with my two small children (2 and 4). By 5pm, the pain is very hard to control even with pain meRAB. Even on the pain meRAB, i still can not sit for long at all. I cannot go out to eat at dinner time. I cannot have a date night with my husband. I cannot take my kiRAB to Disney....all without being in so much pain. I am on Nuerontin, Vicodin, and Opana ER (LA pain med).

I have read so many thread on this back board about people still being able to work, thanks to their meRAB. Am I not being properly medicated? I know I have a bad back and I have dealing with this (through the help of a psycologist). But my quality of life is barely even functioning. Yes, I can walk and am thankful for that. But a trip to the grocery store is enough to get me to tears. Is this what I should expect for the rest of my life?

Oh, a fusion is not an option for me. It will not help heal the nerves. I probably will need one at some point as my discs are degenerating, but for now they don't want to fuse me. (All six surgeons I saw agreed to this).

SOrry this is so rarabled. My two year old is trying to type with me :) Basically I just want to know if those with a similar back injury are getting any more pain relief than I am getting.

Thanks
10sox (who is so very tired of being in pain)
 
I am having the same issue - nerve pain in my lower right leg. I have found that any bending makes it worse so I try to always use the grabber. Surprisingly, icing by back - not where the pain is in the leg lessens the nerve pain. In my case, walking also improves it and just standing in the pool. I am taking Amitryptyline at bedtime. That helps. I cannot take Neurontin because
I had a bad reaction to it. It is slowly improving as long as I don't do something to aggravate it which is very hard. :cool:
 
I still intrigued that they won't consider a fusion. I had an L4-S1 fusion 16 years ago in my 20's. It alleviated much of my pain (the nerves were no longer impinged) and with good body mechanics I've been doing well ever since. This was the only way to relieve some of the impingement and nerve damage/pain along with the severe instability of my lurabar spine.
 
I have hired a social security disability lawyer. I have not had to pay any money out of pocket. I thought it was worth the fee if they could get me through the process quicker. They collect their fee off the top when you get your first check. They did all the filing online although you have to be present in the office according to social security laws when they complete the actual application online. They have saved me a ton of aggravation and headache. You might want to see if there is one available in your area. :angel:
 
What kind of dosage are you taking with Neurontin. I had to get up to 2100 mg to get sciatic pain relief. Narcotics don't address nerve pain and are a waste of time. (Just my opinion). Neurontin can give good pain relief but the dosage has to be correct.
 
10sox, I would definitely get another opinion. Go to a spine specialist in a different group, preferably one who has done a fellowship.

I've had 2 fusion surgeries, which both helped immensely with my pain. But pain-free was never the goal, and even though I'm much better off, I'll never work again. You might want to look into applying for disability. I'm sorry. I know that's not what you want to hear. But if this is permanent and there's nothing that can relieve your pain sufficiently so you can work again, you should apply before it's too late. If you let too much time pass, you won't qualify. You have to have worked a certain amount in the last 10 years to qualify. I was just awarded disability a couple of weeks ago. It's a long process! If you do this, you'll want your doctor's support, so ask questions during your appts like, "do you think I'll be able to get this under control enough to work?" If they say no, ask them to document that for you. My doctor was right beside me the whole way and documented well for me at every appt. At your age, you'll need to prove that you aren't able to do ANY job full time, not just your previous job. Be prepared for a battle. Social Security is designed to discourage you, and you WILL be turned down, probably twice, before you get to go before a judge for a hearing and be approved. But if that's where you are, you've paid into the system for this very reason and should apply.

I'm sorry it's come to this for you. I wish you the best!

Emily
 
10sox,

I just wanted to let you no that instead of narcotics, I take neurontin 3600mg per day which is the maximum dose. I take arabien cr, trazadone and flexeril at bedtime that knocks me out and at least I get about 5 or more hours of good sleep. I also am limited to going to the grocery store, I avoid the movies, drives and boo hoo Disneyworld. An added benefit is also poor short term memory from the neurontin. I tried lyrica and it caused swelling, I would be careful with that med it is too new.

Mary
 
I dont have anything great to tell you but I do read so much good stuff about "lyrica".....may look into asking about it....I have a personal friend who just has a new life because of it....not to mention several on here.

Good luck,

Devon
 
Devon-
Thanks for responding, but I already tried Lyrica. It did nothing for my pain and made me VERY sleepy.

10sox
 
Georgie- Myelogram and MRI's show now compression.

SpineAZ- First, all the doctors I saw said I am too young for a fusion (35). They said it will weaken other levels of my back and cause me more problems in the future. Second, I have nerve damage. The fusion would stabilize my back (but cause more problems later on) but it won't do a thing to heal my nerves.

Pooby- I was on 2400mg of Neurontin for three months. It really did not do much but made me pretty tired. I am now down to just 1200mg at nighttime to help me sleep.

I saw my PM doctor today and he is going to give me another epidural injection but I have to wait a month due to scheduling conflicts (both me and dr). He also told me to take 2 of my hydrocodones at once when my flare-ups get too bad.

Thanks for all your suggestions. If anyone knows how to heal damaged nerves.....PLEASE let me know!!!! :)

Thanks,
10sox
 
I also have numerous back problems, but have had surgeries.
I went thru the same thing you are going thru right now where I was living NO LIFE. I coudlnt bear to take the kiRAB out to the beach, just normal every day things were horribly painful (grocery store)...
I had to quit my job (which was mostly doing stuff on the computer).. AND I, like you, also knew people that were having issues but "thanks to their meRAB" they were living almost normal lives.
I was in pain management, and was on ultram, lorcet, neurontin-- Finally one day I went in and told him everything I was feeling and asked him if this is what my life was now going to be like..
HE WAS FLOORED- He couldnt believe that I went for that long without talking to him (I didnt talk to him because i was afraid he would think i was just wanting increase in meRAB, i didnt want him to think i was "whining", etc).. anyway- He said there are SOOOO many different meRAB and sooo many different strengths, and that HE NEEDED to know when I wasnt functioning so that he could change things.....
We changed the meRAB, and ive been living in a different world ever since.
I can play with the kiRAB- I can go to the grocery store, I can even wash the dogs (lol- i couldnt do that for a looonnng time because of the position you have to be in nxt to the tub!)...
Anyway, we are in the same boat where there is nothing to be done right now except control the pain, and I really think you should talk to your doctor- I definitly think that your meRAB arent working and you arent on the right doses. Your meRAB SHOULD allow you to live a better life than you are living right now!!!!
Within two days of that appt where I broke down in the dr's office, I was sooo much better, I called him and thanked him and everything else. I coudlnt believe it!
Is there anyway to get in to see your doc anytime soon??
By the way is he pain management doc??
GOOD LUCK, and i sincerely hope this helps!
 
I had to LOL for real when I read your story about dinner. I DID THAT BEFORE!!!! I TOTALLY DID THAT !!! I can still remeraber where we pulled over on the way home because I had to get out of the car and try to pull myself together! It isnt funny of course, but its just crazy to hear that im not the only one thats gone thru something like this! I felt soooo bad because I felt like I ruined the dinner, ruined everything. It was horrible! That was RIGHT when I went into the doc and bawled :dizzy: !!

I am at a loss for worRAB that your doctor plain out said NO when you told him what was going on.... I WOULD ABSOLUTELY TAKE the husband with you this time, I think having someone "attest" to your pain being out of control helps a LOT. He should tell the DINNER story, too!

.... AND have you ever looked into a different doc? Im sure others have suggested that, but geeeeeez I cant believe he said NO! ESPECIALLY WHEN they are causing GI issues, what in the world!?

When did you ask the last time? and When can you see him again? Maybe he will listen the second time??? I know some doctors think you should expect some BAD months where everythings at a flare and those months you just have to suffer a little. Maybe he thinks you were in a flare, and when you see him again, and you are still THIS BAD he will listen???

DO NOT give up, keep asking. KEEP ASKING! KEEP ASKING! When I got bad, it took me way too long to break down and ask, and afterwarRAB I was soo much better, I was an idiot to NOT just ASK. SO definitly dont do what "we" do (lol) and keep it inside. Im really good at keeping things inside, and its definitly a bad thing when it comes to pain management!

I have also had the ep injections and OH HOW I WISH THOSE LASTED LONGER. Mine, unfortantely last only a few days, sometimes a week. I havent gotten one for a long time because the pain of getting them wasnt worth the relief i was getting. My doctor never pushes that stuff. If it isnt working, thats it- he doesnt remotely push anything ever.

I wish you lived in MD- you need my doc! I also have a two and half year old, (and I would have a four year old but he needed a heart transplant and didnt get one in time- he would have been four in Noveraber 2008) And I can totally see where you are coming from with trying to keep up w/them... I also have a ten year old...

I cannnnnot even begin to tell you the difference JUST CHANGING my meRAB has made in my "parenting". I can do just about everything w/her now. I took her to the beach all summer, I EVEN TOOK HER TO DISNEY WORLD this past summer... before i "broke down in the dr's office" THERE IS no way I could have EVER done that. WHen my 2 year old would come up to me (she was one then) and rub her belly to say she wanted a snack, I would literally almost cry just because it was soooo hard for me to even get her a meal put together!

Within two days of the meRAB change, I was making dinner AT NIGHT for my family- hadnt done that for EVER... And ive been absolutley fine ever since. No increases, nothing. Im of course in pain, but i keep a pretty level 3 ! I think thats pretty good for a chronic pain patient!

AND im not "stoned" or tired either! You know as well as me that when you are dealing w/chronic pain and have kiRAB, there are meRAB out there that you can take that will DEFINITLY take the pain away, but we cant be zonked out on the couch half the day either ya know! SO we need a pain management plan that keeps us at a level that we can play and take care of the little ones, AND be awake/alert!

SO anyway, not that ive accidentally typed out my whole life story lol, I hope this helps, and WHEN IS YOUR NEXT appt???
OH yeah- about the meRAB, duh!!
I dont think you are allowed to post dosages are you?
But I WAS on:
Neurontin
Ultram
Zoloft (he had me on that for sleep, not depression)
Lorcet

I was switched to
Oxycontin
Roxicodone
Norco
Ultram

I know that sounRAB like a lot . But not all of them are every day and they are staggered so that there isnt a "down"time.. if that makes sense. He literally took out a piece of paper, wrote down the 24 hours and showed me how to take them in a way so that they were all being maximized...
I truly believe that ultram makes my meRAB work longer and better, because i see a big difference if I dont take that one atleast every day in the morning.
Ive been on these for almost two years with no increases, no problems.

Have you tried any of those??

TTYS!!!!
 
Jenius-THanks for your reply. And first of all....I am so sorry to hear about your son. My son turned 4 in Noveraber, and after I read your post I literally had tears in my eyes. He has a heart defect, and we see a cardiologist every year, but fortunately, he is fine. I am so sorry and cannot even express the sorrow I feel for you.

I really do not know why he won't take me off the Opana. He has ALWAYS been so great at listening to me when I am in pain. He is the one who has encouraged me to try the LA meRAB and told me there is no way I should he living in so much pain. I don't have another apt scheduled with him because my next apt is my epidural injection...next month. His office told me they would refill my scripts then and no need to make an office apt.

As for meRAB, this is what I have tried:
Lyrica
Cyrabalta (for pain, not depresssion)
Tramadol

This is what I am on now:
Hydrocodone
Nuerontin
OpanaER

THanks again everyone
10sox
 
`hi it seems like we have similar problems although my nerve spine damage was done by surgery having a disc removed,so would appreciate it if anyone gives you any advice i would be gratefull,have been told that nobody would want to operate i am on few different pills with not much help of all ops i have had ie kidney transplant,knee replacement hip done 4times and acetabular revised . as i was informed small op on back
10yrs ago turned out my most nightmare they said it would take 2yrs for the nerve to heal itself,8yrs down the line worse now then 10 yrs ago. any help or advice you get would be appreciated thanks
 
Have you looked into the X-Stop procedure. You can look it up on-line and even watch a video of the procedure. If your sciatica is the result of a pinched nerve, this might help. It is a minimally invasive surgery with limited down time. I had the procedure on Jan. 5 and the sciatica pain was relieved immediately. I still have some back pain, but the sciatica pain is gone. Good luck.
 
Oh My Gosh !
I cant believe that!
I was half stunned when I read your post!!!!
I had already said that we have so much in common- THEN I READ about your son!!!
IM SOOOO GLAD YOUR 4 year old is OK!!! My heart goes out to you, and your son! I bet hes a sweetie! I often wonder what Noah would be like now. I know my 2 year old would love him so much!
My son had a surgery to try to help him until he could get a heart but he did really bad with it and didnt live very long after.

Its refreshing to hear about a little boy w/heart problems that is OK! It really is.. I love to hear that.
I bet those cardio appts are very stresssssful each year....


With the pain- I think the only thing you can do at this point is take the husband, and hope that helps to talk him into diff meRAB. Thats so weird that hes so stuck on OPANA if it isnt working, but docs have their favorite "meRAB" sometimes and its hard to change that. One of the "points" of pain management is so that you can try to live a pretty normal life, ya know! And you said in the first post that your pain is affecting your life BIG TIME- that just BITES!

Honestly I would call the doc and tell him you want to see him again, do you have to pay for the appts/do you have insurance and all that?

Maybe he will "get' that the meRAB arent working if you cant even wait until your nxt scheduled appt-- The squeeky wheel gets the oil, kind of thing.

I think thats NOT the right way that saying goes, but you get it LOL!

I dont know HOW YOU DO THOSE injections that frequently. I HATE THEM. I do really well for a few days AFTER, they do work but its very very short lived. BUT the pain of getting them is horrible! My blood pressure spiked so high the first time I got one that he had to keep me in the office for almost 3 hours to calm me down. I think some people do better with that stuff than others though!

Does OPANA come in different strengths?
 
Thanks everyone for all your advice. IT means a lot to me to talk to all of you who understand the pain.

I have seen SIX back surgeons (from three different practices) and they all agree...no fusion. I do have DDD, but my discs are not to the point where I need a fusion. My L5-S1 has herniated 2x, and I am told if it goes again, then I will need the fusion.

Again, the reason for my pain is nerve damage. Even if they stabilize my back with the fusion, they are only giving me a 50% chance it will do anything for the nerve damage. Their thinking is that once the back is stablized, there will be less stress on the nerves and maybe that will reduce my pain some..but not all, if any. So for now, all SIX have said they would not do a fusion on me. Frankly, it's not something I really want anyway since I have a 2 and 4 year old at home and my family is 1500 miles away!

I am in the process of filing for Disability. My doctors have encouraged me to do so. I have been told I will automatically get denied the first two times and then I will be able to plead my case the 3rd time around. I do hope that one day I wil be able to work but for now it's not looking good and I need to apply before I lose all my credits.

Oh..I almost forgot. I was on Lyrica for over 3 months....a very high dose and it made me so sleepy that I would fall asleep on the couch while watching my kiRAB! It did nothing for my pain either.

Thansks again! I feel like I have tried just about everything and now am just left trying to control my pain the best I can. It reallly stinks.
 
There's a disability section of healtrabroadoarRAB. If you any questions while you're filing and waiting, there are lots of very helpful folks over there.

Blessings,
Emily
 
Yoga has done wonders for my back, and so has a regular weekly massage coupled with some treatments from a osteopath. I have a small sac between two of my luraber discs, which is harmless, but a slightly shifted disc which causes shooting pains from time to time... taking care of posture and getting an increased blood supply to the area (via yoga), it does help...
 
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