Good Morning America on Cronic pain tomorrow
 

Dear Women In Pain Community,

For Grace spokesperson, Cynthia Toussaint, will appear on tomorrow's (August 19th) Good Morning America.

The segment will highlight the FDA's consideration to approve the antidepressant, Cymbalta, for the wider indication of chronic pain. If approved, it would be the first antidepressant cleared for chronic pain.

GMA airs from 7 to 9am. We're told the segment will be teased and shown at 8am.

Best,
John Garrett
Director, For Grace


For Grace
Dedicated to Ensuring the Ethical and Equal Treatment of All Women in Pain


forgrace.org

Thanks for this!
I don't actually get network TV, I'm on hulu.
So,
if you see it posted anywhere, could you and would you kindly let me know?

Thanks, Ada!!

My wife gets everything, on five of my tv's. (Of course I owned them all before I met her)....
Now, Everything's hers.......
Women have ALL the legal society on their side..... We need a new thread, hey?

Men in Pain, too, Right? They never usually 'Get' That!
Thanks again!

Pete

xo

Thanks for the tip. I will definitly watch it.

I'm surprised that Cymbalta is being pushed by the FDA so hard for Chronic Pain. I understand the concept behind all these anti-depressants helping with really nerve pain not all chronic pain conditions. But I could not take Cymbalta again, I did try it, or any other type of drug in that class. Honestly I never reacted to any of them well and I feel they changed my whole personality and did absolutely nothing for pain in my case..

I have heard of "forgrace.org" and have seen her on the Discovery Channel and now has a director working for her. I know her organization has done much to get the word out for RSD. Just hope they don't have a deal with the Cymbalta manufacturers??? For drug manufacturers it's always about dollars and profit. I think Cymbalta is a dangerous drug and I have heard the same from my doctor, all be carefull. This is only my opinion.

Gabbycakes

I saw the segment this morning it was O.K. seem to be leaning towards more caution about how the FDA may pass this for pain relief use. Seems that the FDA is not totally sold on this idea.

My PM Dr. had me try this for nerve pain after 8 weeks I pleaded with him to take me off of it which he agreed. I was a zombie on this med. air head, really bad headaches, could not stay awake, real short attention span, could not urinate but once every other day, could not drive while on it, could not talk to people without sounding mean and like a idiot, and more but most of all had very little nerve pain relief. To me this drug is evil. If I would have continued to have taken it I would have ended my life by now because of how bad it made me feel. I was hollow person.

I have been off for 3 weeks and I feel like a new person. I can deal with people again, drive on short trips, not pass out so easily, headaches are gone, can urinate again.

I feel really bad for the folks that have to take this med. I hope you do not have the side effects that I had.

HI,
 

I didn't get to watch it but did get an email from a friend that said it seemed to be leaning toward using it more for Arthritiis.

I have tried it already years ago for depression and couldn't handle the side effects. I do know though that what doesn't work for one works for another.

My question would be though if it's already approved by the FDA for depression why would they not let them try it for pain if it has shown some signs of working.

It's interesting how they let some companies get meds out there so fast and others not. Vioxx comes to mind of how fast it came out and how many people it screwed up.

Ada

I felt terrible on Cymbalta - I felt depressed when on it. I could not urinate either. Did not help with pain AT ALL. I was on it three months. Finally the urination problem was just terrible... I was put on a diuretic and still having problem. Dr. kept telling me it's supposed to work! I have had no success with any anti-depressant. Only thing they do is make me feel depressed and make me gain weight. Recently was talked into trying Savella. Same thing - could not urinate.

I do not understand why they cannot figure out something to help people in pain. I really do not.

I've been on 60 mg Cymbalta for quite a while - perhaps a year and a half. I also take Topamax (I think 100 mg 2 times a day). I tried to wean off of the Topamax after I started getting ketamine infusions, but my migraines started to come back and it was just awful. So I went back on it and so far it's working well.

Personally, I haven't noticed any problems with the Cymbalta. I honestly don't know whether it's doing much, because I haven't tried to go off of it like the Topamax. I've read here on this board that it's hard to get off of, because you can go into withdrawal. But when I forget to take it I don't notice any problems, so perhaps for me things will be different? Who knows...

Since I know I have issues with depression because of my RSD, I don't want to go off of an antidepressant without another one line up to take its place. And because I am somewhat stable right now, I don't see any reason to change my line of meds. But it's nice to get the heads up regarding possible side effects. Thanks for the thread.

Peace, Sandy

I have been on Cymbalta strictly for nerver burning pain-60 mg at bedtime and have to say it has helped a GREAT deal and no side effects taken at bedtime. So I am glad it is being considered for nerve pain.-Carol

My daughter takes cymbalta, and she is doing really well on it. Her burning pain is much better...I feel her moods are better as well. I can't say that it is the miracle drug, but it is certainly helping.
Sandy

Hi Carol and Sandy,
 

Like any med, what works for one doesn't work for another. If it's working why mess with it?

My biggest thing with side effects is what might be long term and what isn't.
I do know with Phenergan they are saying that you can have jerks and tremors and they can be long term so I only take it when I have to.

It's important to keep the depression under control too. Depression makes the pain worse I believe, you just seem to notice it more because you lay around with nothing to do but to think about the pain along with being depressed.

I can't take any of the depression meds so I live in Councelling. It works for me as well as the meds. I just have to take the Councellor once in awhile not everyday. LOL I'm glad to hear it is helping someone with nerve pain. That's a start.

If it's not broke, don't fix it.

Ada

I take 60mg of cymbalta, and notice no side effects, except 'maybe' urination, the only thing I notice, is that when I gotta go, I gotta go!
No problems.

When it came out, I was on something else, I honestly forget the name, my Doc simply switched me over. Stopped the old one, went right to Cymbalta, and it's worked well.

I do have some depression. It helps, and it helps somewhat with the pain.
'Somewhat' being the keyword.....

Hope you're all well!

pete
asb

I am glad it is helping some people. I really am. I have depression... didn't think I did until I took some tests and found out I did... :rolleyes:

But the anti-depression meds make me feel terrible. Go figure.

Still, I am glad that they help some people, at least.

Wellbutrin was the best of the bunch, but raised my blood pressure out of control.

It is always something!

Hi daylily,
 

I couldn't do the depression meds. Some made me more suicidal.

My husband was on Celebrex for about 4 years before he passed and he loved it. He said the whole country should be on it. LOL If we were living today, he'd add the Goverment to that statement. LOL

You might want to try it. It's not as old as a lot of the other ones. I noticed with meds the Drs. seem to stick to the older ones.

When it comes to depression, I believe there are a lot of people who have it, who won't admit to it or doesn't know they have it. I think a lot of people with cronic pain deal with depression.

You might want to try councelling if you can take the meds also.

Ada

Trying to figure out what to do
 

Hi there,

My mom has been diagnosed a few days ago with RSD (or at least a couple of doctors told her it's RSD and from all the research I've read since I think they have the correct diagnosis).

I looked at treatment options, read multiple research papers, followed SandyS's ordeal with her daughter at the RSD center in Tampa, I built a mirror box (it may have some impact, not sure) and I am still in the process of getting myself educated on this matter.

Multiple sources indicate that good progress can be made if treating early. I think we're early as my mom's hand operation, which apparently lead to RSD was conducted at the end of June. But I don't know what to do next.

Ketamine? Ketamine Coma (arghhh..)? More Mirror Box? Drugs? Intravenous blocks?

At this point in time, everything is on the table. Mom is 64.

I appreciate any insight you might have. I read through several hudred posts on this forum and you guys are great!

Thanks!

Talmon

Talmon, Wow!! I wished my kids cared as much as you do. You are absolutely right that early treatment is the key to remission. Find a good pain management doctor close to your area as you will be making multiple trips. Be sure and ask the doc if they believe in treating aggressively or want o just mange with pain meds. You will want the doc that is willing and able to do needed procedures. Once I found a good doc, he wanted to do two different blocks (I have RSD in my left arm and hand) to see if there was any change in my condition. Other people here may give you better advice, I am a WC patient who was undiagnosed for over 5 years and then sent to a PM doc who only managed with medication, so I am pretty far gone into this disease process as of now. Some people here get good relief with the blocks that lasts a long time for them. I did have several hours of relief and a temperature change with my three, so that led the doc to believe that I would get benefit from a spinal chord stimulator. I have not done that since WC has been delaying the trial since early March. One thing that I do know is that your mm should not use ice on her affected limb, she needs to try to keep moving her limb, hands and fingers as much as possible, and if she can stand it, not wear a brace or support as that will lead to atrophy. If you have a piano, finger exercises are great for keeping up finger/hand strength and agility. There are people here who can tell you more about ketamine and what order it came in treatment options than I can.

The RSDSA has a great website that can help you locate doctors in your area and they have excellent membership materials that they will send you when you join. In particular is a business sized little card that explains what RSD is, what it feels like and how other people can help your mom. Be aware that I have only found two other doctors who have even heard of this condition, so when I am able to hand over that card(which I carry with me all the time with my med list stapled to it) they don't just blow me off as a pain medication seeker. Best of luck to your mom and to you, Lisa