[Tink-r-bell]

Hello,

I've been lurking for quite some time but have never posted. I was diagnosed with RSD in my arm last fall & have had a pretty tough time finding much relief. I'm currently on Neurontin & Tramadol and am having stellate ganglion blocks with limited success, and my pain doc just put me on Cymbalta, hoping that it may help alleviate some of the pain & help with my depression.

I took it for the first time yesterday & I slept for 17 hours straight and am hoping that the sleepiness will pass.

Have any of you tried Cymbalta & has it helped with your pain?

Thanks!
Tink

[Lynns409]

Hi Tink!
Well, besides the pain thing, we have tinkerbell in common! She's my favorite. Something about the spunk- she gets squished down and comes right back fighting. I try to be like her! I'm on Cymbalta, 120mgs in the morning- in keeps me awake if I take it at night. At first it did make me sleepy and sick to my stomache- but it was worth sticking with, for me. It's the first anti-depressant that has effectively controlled my depression (14 years of RSD will do that to you! And never let anyone tell you that your depression causes the RSD- RSD causes depression.) And based on the way that it works, it should have an effect on neuropathic pain. But neurontin, topamax, or zonegran will have a much bigger effect than the cymbalta ever will if it's just prescribed for pain, and not depression. But it will add to the effect of the neurontin. Personally, out of all the anti-seizure meds, I like topamax the best. Fewest side effects. Ultram never worked for me. It isn't an opiate and might not be as good for chronic pain as the time release opiates. Has your doctor steered you away from these meds? I know that at first it can be a big jump to take, but they do work and can be effective for pain control. The whole goal is to get your pain levels stabilized to a point where they can be tolerated. And you're at the early stages so maybe even gone! For instance I used to take oxycontin every day, and then I have dilautid for breakthrough pain- pain that escapes through the everyday dose of oxycontin.
With these things in place, I could function. And with my spinal cord stimulator. I could go to school, I could finish school! I can have a relationship and not snap all the time because of the pain that i'm in. Meditation and mindfulness really help me in my day to day life too.

I know that it can be a scary jump ((it was for me) to go to opiates, but they work- you get back that bit of sanity.

I just read that back and I sound like a drug pusher! All that I mean is that you deserve proper pain control, and you have the right to have your doctor throw everything but the kitchen sink at this thing. And sleep! If you don't have pain meds that work, you can't sleep and you'll never be able to function.

Cymbalta is wonderful for depression, but you deserve more to beat this thing down. Hope this helps, if you have any questions feel free to PM me. I'm a neuroscientist by trade, so if it's all greek to you I can help.
Linnie

[ali12]

I haven't tried Cymbalta but I just wanted to Welcome you to Neurotalk. You will find many great people here. If you need anything just ask - I will try and help you if I can.

Heres some links about Cymbalta, I hope it helps you:

http://www.cymbalta.com/depression/about.jsp

http://www.netdoctor.co.uk/medicines/100005102.html

Take care
Alison

[Tink-r-bell]

Thanks So Much Linnie!

It's always great to meet another Tinker Bell person

I too am very much like her and I think that's why this crazy thing is so tough. I'm not on any stronger pain meds because my pain doc knows how opposed I am to taking anything. Maybe it's my fear of being out of control......I don't know. But every time he suggests a new drug, I feel that much more out of control.

I was always the kind of person that avoided doctors like the plague (I'm doctor-phobic) and to have my life changed so dramatically over the course of 2 years, with doctors playing such a big role is a bit overwhelming.

I'm rambling again....sorry.

I am on Ambien to help me sleep....I didn't realize just how important a good night's sleep was until I finally got one. It helps, but I still wake right up when things get really bad.

I'm so glad that I found this forum.....I don't know anyone personally who can understand....So, thank you to everyone here

[daylilyfan]

I'll second using Topomax. Or is it Topamax. I can never remember. I tried neuontin, lyrica - just cannot tolerate them. Have also tried probably 15 antidepressants for pain. None helped. Doc just wrote a script for celexa last week to try, but I looked back in my notes and have tried it before. (previous doctor).

When I tried cymbalta, we gave it a few months. I had a terrible time urinating on it. I just couldn't go. And, I gained about 20 lbs even though I was very careful in what I was eating.

Topamax helped me a lot. Aftrer 6 years on it, I had to give it up. I do graphics and photo work on a computer for a printing company. Topamax was messing with my vision close up. Just blurry enough I had problems doing my job. I've been miserable ever since going off it.

My doc has me trying Klonapin now. If that doesn't work, we'll try tegratol. Then, I'm going to ask about going back to topamax anyway... I'll have to deal with the blurry vision. My eye doctor said it was drying my eyes out. I know I had some ear problems to while on it, as it was so drying I had no earwax to protect my eardrum. I use contacts and glasses - I am very very nearsighted. If I have to go back on topamax, I'll have to give up on the contacts and get new really strong glasses.

Good luck to you. It's trial and error on the medications. What works for one won't do anything for the next person. And what works for you today might not in a month. I think that's one reason the docs get so frustrated with our cases.

Jules

[nopainever]

Hi there...I have full-body, systemic RSD and was put on Topomax after being on Neurontin and Lyrica...Both of those made me very sick and nauseated and I also gained weight on Lyrica...I have been on Topomax 100mg for 1.5 years with time off for a pregnancy. I started at 25mg and increased weekly to 100mg. Topomax has been wonderful for me. I have noticed a significant decrease in nerve pain and burning than what I would normally be dealing with. I wouldn't be able to do 1/2 the things I do if it wasn't for Topomax.

I will be honest with you.There are a lot of side effects that people complain about like: blurred vission, loss of appetite, weight loss, confusion, irritability, and nervousness. A couple of these affected me at first, but as my body adjusted, they went away and I don't have any anymore. I would suggest increasing and decreasing to adjust to side effects.

I also take Klonopin 1mg 1-2 tab at bedtime as needed for sleep. Other drugs I am on are: Fentanyl Patch 100mcg/hr, Roxicodone 15mg, Desiprimine 10mg, Prozac 40mg, and Skelaxin 800mg.

I hope this helps...Please feel free to ask me any questions.

Heather

[Sandel]

Hi Tink..
I have no experience with the Cymbalta I am afraid but I would like to welcome you here.

Hugs,
Sandra

[Tink-r-bell]

Thank you all so much!

I belong to a few other online communities (not nerve related) and I can honestly say I've never felt so welcome. I've read so many stories here and am amazed how everyone has been able to cope with this monster. I've had more than my share of breakdowns since my relatively recent diagnosis and just hope that I can find the strength in me that many of you seem to have.

Thank You All Again!

[Imahotep]

Originally Posted by Tink-r-bell

Thanks So Much Linnie!

It's always great to meet another Tinker Bell person

I too am very much like her and I think that's why this crazy thing is so tough. I'm not on any stronger pain meds because my pain doc knows how opposed I am to taking anything. Maybe it's my fear of being out of control......I don't know. But every time he suggests a new drug, I feel that much more out of control.

I was always the kind of person that avoided doctors like the plague (I'm doctor-phobic) and to have my life changed so dramatically over the course of 2 years, with doctors playing such a big role is a bit overwhelming.

I'm rambling again....sorry.

I am on Ambien to help me sleep....I didn't realize just how important a good night's sleep was until I finally got one. It helps, but I still wake right up when things get really bad.

I'm so glad that I found this forum.....I don't know anyone personally who can understand....So, thank you to everyone here

This forum is great and seems to be improving every day. Having people who understand my problems is really helpfull since even docs sometimes don't. Comparing notes and keeping up with the research is also useful. It's a shame there wasn't such a resource in '98 when I got RSD though I might not have found it since I didn't know what my problem was until much later.

I've tried cymbalta and find it highly effective. Unfortunately I can't both eat and take it.

Sleep is simply critical to my well being. I have to get a good night's sleep to have a chance. The doc put me on tizanidine as soon as I started having a lot of trouble with insomnia and it helps a great deal. Apparently I have a very fine tremor that is barely noticeable but it keeps me awake. The tizanidine stops it. Now days I also take a little seroquel as well which helps calm me down. Usually if I can't sleep it's an identifiable reason and I have other medications I can take for them.

I would suggest that you use as little to help as you can get by with. Most people with this problem end up on a lot of drugs. Be sure one is helping if you're going to use it and always let the docs know what's going on.

Working with the doctors was one of the hardest things for me as well. While I've always had great respect for their tremendous amount of knowledge I've always had great fear of their ignorance. I try to stick with docs who fear their ignorance as much as I do.

There are a lot of good doctors out there but try to be sure you understand what they're thinking. Don't take it personally if they talk about mood drugs since this problem is extremely depressing and it appears to affect the brain in numerous ways. And then of course, the brain affects the disease also.

Hang in there. Don't give up. This will change your life if you can't get it in remission but it doesn't have to destroy you.

[Lynns409]

Hi Imahotep!

I was just wondering how long you stuck with the Cymbalta. I know for me, at first, I couldn't eat at all either when I started it, and that kept on for about 2 weeks. It slowly subsided after that time. I just wanted to give you a little encouragement on that front since it sounds like you liked it other than that.

And I take Seroquel too for sleep! That's all I take, and it's wonderful. So much better than Ambien for me. Sometimes the Ambien worked and other times it didn't - it seemed very unpredictable.

Tink- I completely and totally understand not wanting to cross the line to stronger meds. I had this complete aversion to them for so long. I had this thing that people "like me" don't take drugs like that. I have never even tried any recreational drugs (ever!- I was already on a full regimen of RSD meds when I was in junior high, and the idea of taking more, for 'fun', just wasn't appealing.) Even now, my grandma will tell me that I should smoke pot to help with my pain and I just laugh it off. My GRANDMA! She told me that she would pay for it if I want to. I just have this image of my grandma on a street corner buying drugs! Cracks me up. But anyways, I graduated in the top five of my class in high school (I was valedictorian until I started taking time off of school for blocks and my pain got worse my senior year. That's one of the things that I'm ****** that the RSD took away. Grrr! Argh!) But I earned a full scholarship to UCSD, and I just had this whole thing that 'I don't do that sort of thing.' I'm a total type A person- and the idea of losing even more control than I had with the RSD was too much for me.

But when I started having massive panic attacks that I was going to be in too much pain to study when I had a big test, I started to try some of the stronger meds. And knowing that I had a surefire way to relieve my pain did wonders for me mentally. When it comes down to the choice of being messed up and unable to think or function because of pain, or being slightly messed up because of painkillers, but not be in pain, the choice for me became easier. It wasn't that I was a bad person taking drugs, but I was doing something that was making my life better. But it was definitely hard for me to get to that point. I do wish that I had let myself take them earlier. But I was so afraid of being less than perfect that I wouldn't let myself.

And over the years, I've gone up and down with dosages depending on how bad my pain was. I don't over indulge with them and I try to be on the lowest dose possible. What I do depend on is my spinal cord stimulator, and when that's broken my med levels go up. Speaking of, have you tried using a TENS unit? It's basically an external spinal cord stimulator- it works exactly the same way. That can really be a useful little tool, and it's completely noninvasive. Which is always great.

But yeah- I understand where you're coming from. Maybe the day will come when you'll see other meds as taking control back instead of losing it. And you can always go down on dosages and stop when you want to. I'll be on higher levels when I'm in a major flare, and when it gets better I'll go off of them. One of the things that has really helped me to take back this kind of control is meditation. I took this class called "Mindfulness Based Stress Control" that was just absolutely wonderful. It was based on work and books by a guy named Jon Kabat-Zinn. I'm not spelling that right, but my brain isn't remembering the correct way. It was an 8 week course, once a week for nearly three hours. And it was difficult but wonderful. It's hard to learn how to meditate, and it's hard to move in closer to your pain rather than running from it. But in the end, this class is probably the best thing that I have ever done for myself pain wise. And then my spinal cord stim. It really helps with the depression that comes along with the pain. It just helps me to be more in tune with everything around me and to not be on auto pilot so much of the time.

You should check it out, because it's a non-medicine thing that can really make a difference in how you feel and how you think. The following link is actually to the class that I took, but it has a lot of great info on what this all is. You can also download guided meditations from this site. I hope that everyone checks it out!

http://mindfulness.ucsd.edu/mbsr.htm

Linnie