I saw the Neurologist today and he prescribed Neurotin for the tremors in my legs and physical therapy to help evaluate the function. He made me feel really sad because he kept saying how many meds I'm on and how many things I have wrong and that there isn't much they can do.
I saw the Pain Management Specialist yesterday. Did not like him at all. He thinks maybe it is a herniated disc in my upper spine and ordered an MRI. All he wants to do for pain is put me on Morphine and Oxycotin which does not work well with Neurotin. They are extremely addicting medications and it really becomes a lifetime decision considering all the damage I have. He had not other solutions for my FM. He kept asking where does it hurt. Everywhere. No, I need to be more specific. So, I settled on my shoulder. But he hardly listened and wants complete control over my pain meds.
On top of all this, I just made my 3rd trip to the ER with my daughter who is on these strong pain meds. She started throwing up and couldn't get any of her pain meds in her because of a urinary tract infection. This threw her into withdrawal which causes more of the same, dehydrates her.
I could not go through an episode like that. I don't think these pain meds are worth it. The Neurotin is supposed to help some with pain. At least, it seems like a reasonable solution. Has anyone else taken it?
I am really discouraged. I am so tired of the doctors looking at me and saying, "well, there's not much more we can do for you."
I also have heart problems and I'm not sure I want to be on such strong meds. It didn't help that some guy in the next room over was telling me how he could really addicted on them after a bad accident.
My husband took it for really horrible neck pain. The Rhuemy who treats his fibro thought he had a virus which attacked the nerves in his neck and sent him to a nuerologist. He took it as prescribed and on a regular schedule. The drug made him really tired, stumbling, bumbling, stupid, like to wanna die - tired.
It did relieve the pain in his neck. (He was talking suicide he was hurting so bad.) He was on it a couple of days before he got 'good' relief. I think he took it about 8 weeks and was able to taper off. I was really glad to see my DH again.
It probably does not affect everybody so badly. Maybe it will work for you without turning you into a zombie.
Deanna,
This Pain Management gig stinks.
I had the idea that Pain Management places were all about alternatives. Biofeedback, electrical stimulation, cognitive therapy, advice about alternative therapy pracatices like accupuncture or hypnotherapy, and so forth.
I don't know, maybe you've already been through the alternatives they have, or my idea of pain management is wrong. Any doc can prescribe narcotics--whether curse or godsend. Why do we need pain management specialists to do that?
This must be hugely disappointing. You've put a lot of energy into going through the doctors, queuing up for the new ones, keeping an open mind, and all that.
Just to give you something to throw rotten tomotoes at (the computer screen), can you see another pain management specialist? Someone who is about telling you what he CAN do for you, not what he CAN'T do?
Where there's life, there's hope. Seems to me like you're still well saturated with life.
Your docs must be full of hope for you. That's what we want for you. And if they're not, it's not your fault or that you're hopeless. It's that they're hopeless. Goofy guys.
How can we help?
Deanna,
I just started on Neurontin last week for neuropathy, and I cannot believe how much it has helped me.
I have (or had) severe pain on the left side of my face and scalp due to nerve damage from RA in my jaw. I started taking neurontin last Friday and by Tuesday all the pain was gone. My face was painful just to touch also my entire scalp was tingly and painful to touch, even my cheekbone and ear were painful.
I have been reading the posts on this website for a while now and your post about neurontin has finally made me actually post. You deserve to get some relief. You have so much to deal with. I wouldn't hesitate to give this a try. I know everyone's situation is different but it is worth a try.
I take 300mgs around 5:00 pm and another 300 when I take my bedtime meds. It does make me a little drowsy but I find I am sleeping much better.
Hope this gives you a little relief.
Marian, your husband's experience is exactly what I don't want. I am in a lot of pain obviously. But I'm not suicidal over it. I think that's just my nature. Although, I fully understand the temptation. I don't want to be in a daze all the time.
RKSara, I was hoping for the same thing as what you conceptualized. He offered nothing but the oxycotin and morphine. My GP sent me there specifically to treat the FM and this is all this guy was offering me. I mentioned biofeedback and PT. He brushed off the biofeedback and said PT was a possibility. He was very impatient with me. I am very interested in trying every alternative other than addictive medications. To make matters worse, he said, and he's probably right about this that the Vicodin is not a good long term solution because it damages the kidneys.
I do want to see a different specialist. But I certainly don't want to be sent to my daughter's. I have more confidence in this neurologist. He was familar with all my conditions. I think he wants to help me. I'll probably get the MRI and then see if the neurologist and the ortho will review them.
It is discouraging. I don't like it when doctors just give up on me. In fact it makes me livid. I used that energy in the past to deal with my knees for so long. Surely I can put that same kind of energy into handling this.
But both the Rheumy and the GP wanted to have a Pain Specialist prescribe those medications. I don't like this trend I see. If they are offering other solutions fine. But I don't want to be doped the rest of my life. These medicines destroy your body. My daughter's teeth are rotting out of her mouth, she's always sedated and can't function and she is developing more and more tolerance to the drugs.
Crispy, so glad to see your post. That is encouraging. I actually do think that this medicine might be worth trying. I guessing he is thinking it is neuropathy. He said there is just so much that could be causing it.
Roxy, as always you are such a good friend. It has been exhausting. We were at the ER from 4:00 pm. to 2:00 in the morning. Then, throw the doctor's appointment into the mix. And, I just heard that my brother is having his heart repaired tomorrow. All I can say is that I used to go through all this kind of stuff on a regular basis and then go into work. Adam would be no good for taking Julie. It's almost impossible for him to do right now. At some point, I think he can step in and help more.
I'm really good at sitting in ERs and doctor's appointments. It makes me feel some better than you don't think I'm a wuss. But I would hardly call you that.
I passed the time reading a book about Pioneer Women and all that they dealt with. Now, that makes me feel like a wuss.
You are all so kind. It does help so much to be able to come here and talk to you about it. It is just too overwhelming otherwise.
Thanks
Deanna
Even Though my DH was doped to the gills and not functional - not all people are. This drug used long term (a few months?) can help heal the nerves - I think that is what happened for my DH.
Give it a try please. I hope it works for you and you can tolerate it like Crispy.
Deanna, I've been on Neurontin 3x day since 1999 and it's helped with the neuropathy. I never felt loopy or doped. I felt a little high (actually enjoyed the high) for a week or so but then it went away. The benefits of the drug far outweighed anything else. Hope it works for you and don't be afraid of it. We all respond differently and you may respond just fine. Gosh Deanna, what an inspiration you are! I don't know how you do it.Well sh*t. (excuse me) I don't know why none of us have said this (if they have, I'm sorry I missed it) Deanna and Roxy, you two need to say "screw this" and get a house together. LOL I just don't know what to tell either one of you and I feel so helpless. :( Maybe if you had each other it would make things a little easier. I dunno. Just throwin it out there. I'm running out of help :(
*hugs all around*
I have already thought of that. She wants me to move there and I want her to move here. LOL Or Southern Calif!!
Deanna, you'll never know unless you try. I hope it all works out for you.
CinDee I don't mind starting the Neurotin. I know something needs to be attempted. It's the major pain killers that I have trouble with. Terri, miss you too. And, Crunchy, how did Houston get between AZ and OR. You Texans just think you own the whole damn country. (I love Texans, although being from New Mexico they were our bitter enemies at all sporting events). However, it didn't stop us from talk'in, walk'in and act'in like 'em. **sorry, couldn't resist, had that song running thru my head for some reason!*
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