Just wanted to let you all know my doctor called me yesterday and told me to stop taking the drug and I have to wait for it to get out of my system before he can put me on something else.
I have an appt next week to see him, I'm still in extreme pain, I wish they could figure out what is wrong with me, I can barely sit here at the computer to write to you. I mean after 3 surgeries don't you think they should have figured it out by now. I'm so afraid that he is going to tell me I have to have surgery again. I know I can't start PT yet because the pain is too extreme. My husband wants me to see another doctor for a second opinion, but not sure I can do that since this is a WC case and the neurosurgeon that I have now is supposed to be one of the best around. But we live in NJ and some of the best doctors are over in the city (Phila)
I just want to have a normal life, to be able to do things again. My son-in-law cooked Christmas dinner, and my children and him all cleaned up, they would not let me do a thing. Even with all that I was still in extreme pain, it was a long day with 3 grandchildren and my 3 children all opening their gifts here. But it was nice to be together.
I starting to get to the point where I just cry, I would love to just get in my car and just go somewhere. I have a hard time sleeping because of the pain, and sometimes and I don't mean to I yell at the children for something.
My husband thinks I am also going through depression and should see my family doctor about it and talk to him.
Sorry for rambling on but sometimes you just have to.
I was on Lyrica, couldn't tolerate it either, but had to wean off very slowly per the doc. He did not start the Neurontin until I had been completely off the Lyrica for 1 week. Some people on the board have had a lot of difficulty getting off the Lyrica and some pretty rotten symptoms. Did your doc just stop it "cold turkey" ? If he did it may account for some of your feelings of depression and helplessness. Yes, I would definitely talk to your GP about this and also his feelings on an antidepressant. My doc started me on Cymbalta for the nerve pain but it has also helped me deal a little better with all these back issues. I don't cry 10 times a day now....just 2 times a day Good luck to you girl, hang in there and know that we are all here for you.
I had to go off Lyrica too after a month. I was only on 75 mg daily (total) so I went cold-turkey with no problems. It took two days for the fog to lift before I felt like a human being again.
Now I'm on neurontin for a week (100 mg three times a day) and I know it's helping with pain but I'm still getting the fogginess, forgetfulness, can't find the right words, etc. (not as bad as with Lyrica though) Doc told me today I can take it all at night instead of throughout the day so I hope that works. I hate feeling stoned at work. I'll try that tomorrow and see if I wake up like a zombie!
Deb -- do you take a divided dose or all at once? If you take it at night, does it continue to help through the next day?
Mew -- you poor kitty. Like Deb, I also take Cymbalta and it really really helps with mood. I don't know if it helps me with my pain, but at least I am not crying from the pain.
I take 300 mg all at night. I sleep better, foggy in the AM but the fog starts to lift mid morning. It was helping with the pain until about 5PM which was great. Lately though it hasn't been helping as much...I'm actually waking up with the pain again. I can't take it during the day (wish I could) but like you I can't function AT ALL at work. If I have to answer the phone I can't remember what I was doing before that. I even for a few minutes forgot how to get to work one day and I've been there for 21 years!! It's been good for me, just wish I could take it during the day and still work. Trade off.....pain or fogginess.....Hmmmmmmm
Thank you Deb for the info. I really thought I was a little nuts because my doc was surprised that a low dose like this would have these effects. I have had the same probs on this dose as with Lyrica, though not as bad with neurontin.
I too get very lost on these meds, and my sense of direction is pretty bad to begin with. When I was walking through my office building lost, I just tried to look purposeful, like I knew where I was going. It was so embarrassing! I couldn't find the exit! I tried to remember the name of a restaurant to tell my husband and said "You know, the place with all the food." I can laugh about it now, but spent a lot of days crying about the loss of my mind when my pain doc kept telling me to increase the Lyrica and give it a chance.
I'm going to try the full dose at neurontin at night -- maybe 8pm -- and see how it is when I wake up. At least my new pain doc is sensitive to the side effects (fired the other one!) and is willing to work with me. I just had an epi injection and he says if it works I can try to stop talking neurontin. I tell you, this stuff feels like poison to me.
Sorry to hear it's not working as well for you anymore. Oh, the sacrifices we make for a little pain control!
I laughed out loud reading your post. I can identify. I haven't told anyone this. I was on my way to a staffing meeting last week (go to the same place everyday) and couldn't remember how to get there. I thought well I'll just walk around the hospital till I remember. Well, I walked in areas where no one knows me so I didn't feel like an idiot.....and lo and behold I ended up in the right place...just 15 minutes late! Made some excuse about being really busy. I was asking my hubby to take the dog outside and couldn't remember her name or what kind of animal she was! He looked at me like I was nuts and I just said calmly "could you take that little animal outside please?" You're right what we go through for pain control. How is your epidural injection doing? When did you have it? They did nothing for me except make me alot worse for 3 weeks each time!! I hope they work for you!
Marie - my heart goes out to you. I don't know if you are reading my posts. I have been thru 4 surgeries and to be honest we have so much in common except I would walk out to my hot tub and sit down and sob. At first I felt bad about it and so alone but it was so theraputic to get it out. Unfortunately now my hot tub is so closed because it is part of the swimming pool. So instead I wait until everyone goes to bed and am having my own pity party -- I am allowing myself 30 minutes then I bring out the relaxation tapes and am working on a workbook entitled Managing PAIN before it Manages You by Margaret A. Caudill. Last night I became so absorbed in it that I read it from 12:30 until 2 am. I highly recommend it!! There are alot of worksheets and exercises to do thruout the book. Chapter One has revitalized me and is helping accept that I have chronic pain and that it is nothing to be ashamed of but I can take specific steps to help me realize pain patterns and set mini goals for myself. It has also shown me that feel anxious, scattered, utterly alone, frustrated, sad, and angry are normal and nothing to be ashamed of.
I feel your anger - 3 surgeries and still having pain -- I am on #4 and my surgeon has given up on me.
I highly recommend that you get multiple opinions -- this is your back and let's face it our surgeons are not GOD and they are definitely not perfect.
I too long to have a normal life but I am slowly accepting the fact that it may never happen. I don't want to sound negative but let's face the hard truth - 3 surgeries out we probably have alot of scar tissue and weak muscles. We should not expect to be normal and out of pain completely ever. (This is really, really hard for me to type and I hope you understand what I am trying to say.) I think I am realizing that I have to accept these hard cold facts and now I need to do whatever I can do to gain control over my pain and learn some different mechanisms for controlling the pain - whether it be the hot tub, massage, accupuncture, biofeedback, separating my daily activities into manageable chunks allowing me to rest as needed, etc.
Are you depressed? Of course you are, who would not be after three surgeries and still having pain. Please don't take this wrong but you are showing signs of depression: crying, wanting to be alone, frustration, pessimism, loss of sleep, and irrability.
If you are not on a anti-depressent/anxiety medication, I highly recommend it. I started prozac before my surgery and since surgery I went off of it. Stupid mistake going off of it - now I am climbing back up on it. It made such a HUGE difference in my crying spells. It is okay to need this medication right now we are going thru so much pain, anxiety, and frustration which is totally 100% normal.
Sorry if I was blunt but I simply can relate to what you are going thru - we have to cling to HOPE and put up the biggest fight of our lives to obtain some relief so that we can begin enjoying life again even if it means taking a handfill of pills each day. (No one wants to take a handful of pills but isn't it better to be able to enjoy our loved ones than sit around in pain and suffering from the wrath of anxiety and depression).
Please know that I am here for you and that I CARE!!
One suggestion: Let's all get Pepper's book and start a spiney book club on here. I'm going away to Fla next week for a few days to visit my mom and am going to make it my plane read. I suffer terribly after flying, so I'm going to need it!
Deb: you cracked me up with your post about your little animal. I don't know how I got through a month of work on Lyrica, but my husband reassured me that even on my most loopy days I am still more together than some of my coworkers on their best days. Not much consolation, but it helped me get through. I have a management position and spent a lot of time ducking making decisions because I didn't want to make bad ones. I managed to fake myself through it and only told my staff what was going on and they were extremely supportive and helpful.
I don't think my epi worked much if at all, but I am staying at home for 24 hours and resting and we'll see. My doc was so optimistic about it that I'm trying to psych myself into having his enthusiasm. My hub just left the house to go to PetSmart dog school with our puppy and I had to stay home because all that bending is too much right after the epi. We actually have three dogs, and have been putting 2 of them through classes, but since I can't go today hub only took the youngest with him. I guess my cur is playing hooky with me today!
After the epi, the new pain doc told me I didn't have to come back to see him if I was out of pain. I told him I should be so lucky and will make an appointment. The meds seem to be working more or less, but I was really hoping the epi would be the icing on the cake and I could stop the meds. We'll see. It's my fifth one in two years.
Just wanted to check on you and see how you are doing today. Were you able to see your GP and talk to him about an anti depressant? Chronic pain is so hard to deal with as you well know and I bet you will see that most of us need a little something to get us through. Let us know how you are. How is the withdrawal from the Lyrica going? Did your doc say when he can prescribe something else for you? Hang in there, we are here for you!
Hi Marie, wow!, can I relate to all of what you said, I feel the same way. But how nice of your son-in-law to cook dinner, send him over my way haha....and all of your children cleaning up afterwards, you must have been very proud, and that speaks volumes on how you raised your children.
I'm on Lyrica, and thankfully I have no side effects which for me is really odd, as I get side effects to just about anything I put in my mouth.
I hope they come to a conclusion soon for you, I'm in the same boat also, I have another opinion scheduled at the end of Jan. so I'm hoping to get some better answers as to what can help me.
Hang in there. I'll be thinking about you.
Wow! The side effects seem awful I have only been taking it a few days. I hope I don't get lost. Well I guess we'll see. Hoping I won't. Thanks to all you guys for being so supportive. Everyone is awesome!
Glad to hear that things are not worse. Now that you are off the Lyrica hopefully your neuro can prescribe something to help your pain. Hang in there girl. We'll all get through this. Happy 2008 to you also!!