Just diagnosed and need help
 

I have recently been diagnosed with RSD. I had surgery and boom now I have this. The pain is just awful, I have no energy and I'm trying to work part time but even that is exhausting. I now have speech problems my face swells and closes my left eye. Between the emotional and physical pain I briefly considered not going on but I know that is a permanent solution. Can anyone offer support to someone new to this diagnosis and is struggling. Thanks

Hi Stormy and welcome to our "elite" group. I'm relatively new to crps also.

You will find lots of information and support here. A great tool to use for any topic/system/treatment you are looking for answers for is the "Advanced Search" tab above (it's under Search). When you use the advanced search feature you can scroll down and click on the rsd/crps tab to search just in this topic. Many more experienced people than you and I have offered lots of help and advice here. For example, what types of clothing helps.

The best advice I can give you is to get a "team" treating you. This would include a pain management specialist or pain anesthesiologist, a physical therapist, a psychiatrist, perhaps a neurologist. Preferably each of these should be familiar with rsd/crps.

I found my pain management specialist through this site. I am interested in getting this monster into remission. I'm not interested in masking the pain through treatments like spinal cord stimulators and I tell my "team" this. My treatments need to be focused on achieving remission.

You really need to research this site and other sites because you will be your main advocate for your care. You'll find some medical personnel who won't be up-to-date on what is helpful and what is not. That's another reason you need to read, read, read and post if you have questions. Noone will look out for your best interests more than you will.

Additionally, you'll read here that many of us have had to "dump" the medical people who aren't helping us. If someone isn't helping you or suggesting things that don't seem right, get a different specialist. It's too important that you be treated properly.

The specialist I found is someone who offers Ketamine treatments. Ketamine, from what I've read is one of the treatments that will possibly help achieve remission. The md doesn't feel like I'm quite ready for Ketamine- he wants to try a few other things first. I was relieved that he was quite comfortable with Ketamine because some of the pain management personnel that I spoke with on the phone had never heard of Ketamine so I quickly crossed them off my list. I currently travel 2.5 hrs. one way to see my specialist.

If you search the posts with the state you live in, you may find recommendations on different specialists near you.

It's hard to not get discouraged when you are in quite a bit of pain and are new to this disease. You will find lots of support, encouragement and experience here. But do see a psychiatrist. Depression is a part of this disease and there are meds that help greatly with this. My pain medicine (pm) specialist requires psychiatrist/psychologist involvement.

On the very, very bright side, because you are new to the disease, you have the best chance of remission. Get a team and fight this thing. With proper treatment and support, better days are ahead.

hey stormy.. sorry to see you have this dx but glad to see you reached out instead of looking for the permanent solution. it is a rough road that we must travel I won't lie. but we find that here we meet good friends with great hearts and tons of info to share, including our own ghoulish tales. to be honest this site and others like it are life savers. they offer support,(kind words and understanding) they offer information and a lot of opinions and experience on the information shared with help each of us to make our own personal decisions in our treatment. so I welcome you here as Im sure all of us will in our own ways. take your frustrations and share them and learn new ways to cope that you may not of thought of or maybe you did and you thought it was silly and now its not. .. be well and read on as much as you can as a lot has been posted and ask questions and voice concerns we will gladly offer as much help as we can. be well and godspeed , and until we speak take as many soft cyber hugs as possible:grouphug:

Stormy,

Welcome to the group. Many of us have had bouts of major depression. RSD is a life changer with no doubt. The good news is that you are now not alone. We here will help you through the good times and the bad if you allow us to.
Just remember nothing is worse then taking your own life. You will also find many of us are on antidepressent's as well. Just a suggestion, ask your dr. for a breakthrough medication as well.

Personally, i am now on 6 meds and have 2 breakthrough.Please keep contact with people here and make friends. (and remember God as a purpose for all of us.):hug:

Hi Stormy !

I'm sorry that you have cause to join our 'club', but I'm glad you found us.

Not being able to 'see' a future.....or not wanting too, can be an acute crisis that requires the help of mental health professionals. Please get that help if you need it.

I felt like that years ago, early on in this journey. Finding medical professionals who helped find a better course of treatment has helped me. Finding a counselor to talk to about ongoing issues and a NP to prescribe the correct antidepressants has also been a HUGE factor in helping me get to a better place, psychologically speaking.

Is your employer supportive about you working with your limitations ?

Are your family and friends supportive or are they adding to your burden ?

I'm still not to where I would like to be in terms of pain management and coping with trying to have a life, but I am doing sooooooooo much better than I was.

While remission or cure is evasive, improvement in symptom management is cause for hope.

Hang in there :hug:

I am so sorry you have to go through this, but i am right here with you. I recently had to completely quit my job. I am the same way, no energy and the pain is just so awful. My doctor is doing the lowest dose he can of my meds and upping them every month. So far i have had hardly any relief. I do take a anti depressant, and it helps a lot. Before i started it it was much worse. I would. If you have already told your doctor the issues your having and he is not helping, i would say find a new one who will.

I know its not easy finding a doctor, i am in the same boat, but i am going to keep looking for one, and keep the one i have for now..

I have been lurking on here for a while now, I think you will find it very helpful.