Posted , 13 users are following.
Ok so here I am. I've gotten from 100mcg to about 20mcg but this last 25 is killing me! I'm going crazy, not sleeping, anxiety and God the restless legs every.single.night! I'm sleep deprived and the pain is more intense. I'm going crazy!!!! My legs will not stop! Nauseated etc I can handle but not this jumping all the time. Does it EVER go away?
0 likes, 120 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
john29217 melissa7471
Posted
Melissa,
I give you a helluva lot of credit. Don't ever discount what you've been able to accomplish; a well meaning physician prescribes this medication for us and for most of us it helps with the pain. But, if we decide to try life without it, there is generally no roadmap and not much in the way of help. It took a lot on your part to get this far. As far as the legs, my ankles still twitch, but it's getting better. The anxiety, still hanging around, but that too is also getting better. Hang in there Melissa!
melissa7471 john29217
Posted
John,
Thank you so much for your encouragement. I really am finally getting better. The pain doctor put me on Cymbalta and it seems to be helping a lot. The anxiety is almost completely gone, and the nerve pain is gone. I get a twitch every now and then. The restless legs and arms kick in for a couple of hours a night but then goes away. I've been finally sleeping better. The only real side effects so far have been some muscle cramping but not constant.
I'm so thankful to have found this doctor because I've had no support from primary care. It's been a very long 7 months but I'm finally seeing the light. I could not have done this without this support forum.
Thank you again John. I really appreciate it.
Melissa
donna03256 melissa7471
Posted
carol77581 donna03256
Posted
donna03256 carol77581
Posted
Thank you for your reply, Carol 77581.
melissa7471 donna03256
Posted
Are you coming off the patch?
melissa7471 carol77581
Posted
Carol,
Let me tell you what's happened. I use essential oils and I called my rep and asked her about RLS so she researched and gave me 3 options of recipes. I chose one, I received the oils, mixed them and started them Sat and I haven't had not even a twinge of night RLS. I have had a couple of issues during the day but as soon as i felt it, I sprayed the oils on my legs and it stops within a few minutes!!! I don;y know why I didn't think to call her sooner. I don't sell the stuff nut I use them usually in a diffuser. Just FYI......
HUGS!
donna03256 melissa7471
Posted
Yes. Started in 2006 due to severe degenerative disk disease.
Was up to 175, with a lung cancer dx. Stable now, but I am being titrated off. Tommorow I will be at 75.
I have suspicious scalp melanoma, waiting for path. report & a sphenoid sinusitis which may. be malignant.
I see PM next week.
melissa7471 donna03256
Posted
I've been doing this for 9 months now. It's been a horrific journey that I wouldn;t wish on anyone, I'm finally just now starting to see the light at the end of the tunnel, Carol and I have taken this journey together and it's ben a wild ride. If it hadn't;t been for this group I could not have done it because my dr was no help. He just announced that he wouldn't be prescribing narcotics to anyone for any reason. I live in FL and there's a lot of pressure to get rid of opiates. I'm glad I'm off because I felt like a prisoner to the patch. Can I ask why you're coming off the med?
Melissa
donna03256 melissa7471
Posted
I asked for a pain pump but I am a bleeder. So pm said no. I am determined though. Especially with two new areas of cancer.
I am a retired nurse and refuse to suffer as some of my patients did in NJ. I am in OK now, very little support from family. I am single, overseeing the care of my adult daughter.
melissa7471 donna03256
Posted
It sounds like you've got your hands full Donna. This group taught me how to tape the patches so I wouldn't drop down too much too soon. I had restless legs early on, but other than that I did okay until the last 25mcg. That's when I got so sick and the RLS became what I call "violent." It affected my arms and upper body too. I was having nerve pain, which after 12 years of Fent and CNS suppression, the nerves started coming alive again and that was painful. I had N & V and stomach issues. Then I was feeling like ants biting me and things crawling on me, and I couldn't be still. I had anxiety and I've never had it before. Then a couple of months ago I saw a pain management physician and one of the things he did was to put me on Cymbalta. That was amazing because the neuropathy stopped, the fibromyalgia pain slowed, the anxiety slowed as well as the feeling of things crawling all over me. I started this journey in July, and have been completely patch free since Nov. 27th. You can do this and we'll be here to cheer you on and answer any questions. The neurologist put me on Requip 4mg XL for restless legs and I'm still on it but not convinced it helps much. I started using some essential oils on my legs a few days ago and the RLS stopped all of a sudden after 9 months. The other withdrawal problem has been sores on my body. Carol had the same thing. I have a bad case right now and I still have insomnia.
I'm praying that your pathology is benign.....
Just stay in touch with us and let us know how you're doing. People on this site really care and helps when you're going through this.
Virtual hugs!
Melissa
donna03256 melissa7471
Posted
She ordered gabentin, has anyone taken it? Thanks, Donna
melissa7471 donna03256
Posted
My Mom has had good results with it but also takes Mirapex at night for RLS. My sister takes it for MS. It's used for nerve pain and RLS I think. You may be on another medication that conflicts with Cymbalta. You will hopefully have good results with this regiment! 😊
Hugs!
donna03256 melissa7471
Posted
Thank you for your reply.
Hugs,
Donna
donna03256 melissa7471
Posted
I hope it does go away!