Hi, everybody, I have had rsd for less than a year, so some of the symptoms really puzzle me. I find mental problems the hardest to cope with. Basically, it is as if your nervous system is going 150 miles per hour and it is unable to stop or turn down. (Fihgt or flight system is always in overdrive and the rest and digest part is never on). I cannot sit down and relax or concentrate on something and when I am awake, I have to be moving(plus the tremors ). I cannot enjoy anything anymore but also do not get irritated as I used to, things are just too insignificant compared to the constant high anxiety. Seems like something happened to the centre that is processing the emotions, I seem like a stranger to myself sometimes. So my question is if anybody has experienced anything like this and how does it evolve, may be something helps, medications or other? I would really appreciate any answer, advise or reference, since this is rather scary and hard to explain even to a doctor, let alone to people around you, since visually I am pretty much the same. Thanks, guys, wish you all liberation from suffering, Paul

Paul,
I am so sorry you are having to go through all this right now... it is so so so tough and Id like to say it gets easier, but i think it just gets more "normal". Are you taking Cymbalta? I used to be like that until I started that and it helped me mentally alot, as well it is used for pain. You can take 30, 60, or 120 if you have depression. But it is a GREAT med, and It is the one med that I never want to get off of because it just helps giving my brain what it needs to be happy without me having to deal with all the emotions of fighting mentally. I have had RSD for 3 years and understand. Do you have a good doctor to treat your rsd? Do you take baclofen for the tremors? THat helps ALOT Of people and is a safe drug with minimal side effects helps the shaky, muscles. I am not a doctor, but from my experience your story sounds like me before I was treated.... When I started Cymbalta, it was like a dream come true. It helped so much and I know SO SO SO many people that it helps. ALso if you are not on it, if you go on their website you can get a free months supply to try it out!!! Also, neurontin, or lyrica helps ALOT, i know some people that take xanax for anxiety, I just got started on flexerol 10mg every 8 hours and its making a HUGE difference in my muscles. The baclofen only helps my twitches, but some people it helps everything... so try it out!!!

I feel like the beginning of rsd is like grieving over the loss of how your body used to be and now its completely stabbed you in the back. But you CAN DO IT!!! And you will!!!! Dont give up we are here for you, and there is SO much information on here... if you look at the search button, you can type in something you have a question about and it will pull up threads relating to that question that will have TONS of information! The family here is so kind, and helpful, and we all have different doctors, different experiences, and all help eachother through the hardest times.

Number one medication that I say to help is cymbalta (being that its for pain and its for depression as well) and lets face it, this disease gets depressing, and baclofen... Your anxiety might decrease once your brain calms down or gets in control on the cymbalta.. give it a shot!...

What meds are you taking right now?

Please note* I am NOT a doctor, But this is from my experience and from experience I have been talking to others with RSD pain Hang in there, keep me updated, let me know how you are doing, and hopefully these meds can help you!


Any other questions feel free to PM me or post and I will keep checking!

You will find relief! Hang in there my friend!

Hannah

Also: I have a friend with RSD in canada: if you want to PM me where you live I can contact them to see if I can get a contact\ reference for a doctor. I know she gets ketamine up there and ketamine helps so much!!!

Paul,
I'm sorry you're going through this.
There is a thing that many of us call the Triangle of Care.

First,
Your doctor, your meds.
You deserve a measure of pain relief, sleep and nutrition!
Learn, and be advised about these things
Be sure you have found a doctor, usually a neuro, who is well versed in treating rsd. (a difficult task in itself). Otherwise, you become a test dummy.
(been there).

Second.
Exercise, this is a Use it or Lose it disease! While strengthening exercises aren't recomended, you need to keep moving! Walks are great, warm pools are better, but don't just sit or lay down all day, unless it's positively necessary!

Third.
Your mind.
A Psychiatrist, that deals with chronic pain, is mandatory, especially in the early years. Most of us here are beyond fooling ourselves into thinking we can just 'handle it'. We can't.
Nobody is intended to be a 'miracle person'. So, get this help, find a good psych, (your doctors recommendation should help), and if you like that doc, stick to it. You'll learn an incredible amount with the right one! I cannot say this enough!


I also suggest you visit the

rsdsa.org

There are numerous RSD groups on Facebook.

And, a place called 'neurotalk', remarkably similar to this place! (joke). Great group of people there, that will always be ready to help. They practically saved my life once!

btw, I've had rsd/tos for 28 years now.

PM me if you wish, I check in a few times a week. I wish you the best!

Pete
asb

Yes I can relate to this very much. Worry and anxiety describes me. I agree with others that seeing a psychiatrist and therapist. Meds and then talking about the feelings you have can help. Also support groups. I have been on many meds for sleep,anxiety,and depression. I have had little luck but know for some it really helps. I do feel that sometimes there is a brain chemistry that needs help by meds. Have you been on any? I also did a therapy called biofeedback which is supposed to help you relax yourself etc. Do you have support in terms of family and friends?
I wish I could help more. If you want an email buddy I am here

I'm very familiar with these feelings as well. It seems the depakote helps a great deal with it.

Paul.
I know EXACTLY how you feel. My pain doc also recently put me on Cymbalta, and it has helped with the emotional aspects a great deal, and has been shown in studies to help with nerve pain so you may get an added bonus of helping relieve some of your RSD pain taking it.
My husband is still so perplexed when I my pain is at it's worst, I can't just lay down. He always says lay down so your body can rest, but it just feels like torture to have to LAY there and just FEEL nothing but pain. As you said, your brain is just already in overdrive from the pain, trying to relax in that state, at least for me is near impossible. The Cymbalta is def. helping with that feeling, but not a complete solution.
I wish you the best of luck. Let us know how you are doing.

Hi Paul,

My heart goes out to you. I have a suggestion. If your doctors don't recognize the symptoms you are describing as being CRPS related maybe you need to keep searching for a doc who is more up to speed. How well I remember the same difficulty until I found docs who did not have to be educated.

Best of luck to you.

Thank you very much, I appreciate t, if you do not mind I will pm you. Paul

Thanks a lot, I will definitely pm you. Paul

Thank you and thank you for your blog. Paul