OMG I need serious help Im scared
 

I've been recently diagnosed with Crps and this has been going on five years.
I've had a double fusion back surgery a few years back and the pain is in my back, both legs and feet. The pain is unbelievable. It's unthinkable, the stuff nightmares are made of...
I tried the spinal cord stimulator and it made the pain worse and spread and was later removed. I have a pain dr but he doesn't really treat crps, apparently. :confused:

So, I was referred to a pain specialist in Indianapolis, Indiana, close to where I reside for a pain pump. I got in to see this guy and he agrees it could be a good option. Says to do psych eval, and to call to schedule surgery. I called to schedule the day after the psych eval. Days go by... I leave an urgent message. No returned call. No live people answer the phone, EVER. It has been over a month and still have no call. They won't even return my neurologists phone call. :mad:

So, I don't even want to see this guy again. I need a pain dr, one who can medically manage my pain. I'm in agony, I can barely walk to the toilet. It is really bad. I'm getting really scared my situation is hopeless.:(
I can't go on like this much longer, I'm getting weaker and weaker.

Anyone have any suggestions? I'm in indiana. I need this brought under better control so I can at least walk, and then start PT. pain management palliative care ??? OMG what do I do now???

Welcome Firedancer79. :Wave-Hello:

Someone will be along to help.

Hi

Wanted to say hello, you are not alone, and I will pray you get some help and support soon.

How is your neuro doc helping you? Are you on whatever meds you can take and trying different things while waiting for more opportunities and help? I am sending light and hope for the moment because my thoughts are a little scattered and I am hoping someone who is thinking more clearly can come in and reply with something useful for you!!
Did you consider going to the emergency room for pain management...just to try and get your situation calmed down enough so you can think, breathe?

Hang in there.

Suggestion for Help
 

I agree. Please go to the ER. You are suffering! Also, contact that doctor's superior and file a complaint! Please keep us posted.

Thanks for the prayer, I could use it.
My neurologist diagnosed me with CRPS but says I need new pain management.
I saw my pain dr and although he has treated my pain for five years, he says he's not able to treat CRPS. He says I'm maxed out on meds he can do. He wants me referred somewhere else.
I take (1) 75mcg patch every three days, Norco (6) a day, meloxicam 15mg
Amitriptyline 25mg 1 at night and lyrica 2 75mg per day, zanaflex 4mg at bed

I'm in a state of physical and emotional crisis, but I can't go the ER.
They will treat me like a drug addict, no one understands :(

I'm really sad that when I've been told I have this life altering condition, all the doctors want to run away. Or pass me like a hot potato

Let me say this, I know I won't make it another year like this. I'm thin and weak, and this pain is WAY ABOVE what I could ever begin to tolerate.

Firedancer

I do understand what you are going through, and empathize with your situation. I have been where you are, mentally and physically and it is exhausting and brutal. I never went to the ER or had any immediate care for tough times over the last 25 yrs so I am short on advice. I suffered and suffer through too often and wish someone was there to offer me help and emergency relief. But I think the unfortunate reality is that doctors only have so many options at their fingertips. They try meds, or blocks or therapy or standard protocols and hope for the best.

It seems you are on a lot of meds already so I see why they may not want to add more to the cocktail. It could be they need to change what they give you, switch some things out/in. Have you considered calling a hotline just for emotional support? Do you do any spiritual or calming things to try and help your body ease up? Relaxtion, meditation, etc? I know it is not an answer or immediate pain reducer but it can help the mind. A little.

Distraction can be effective sometimes. I know no one understands and the docs don't seem to get it, but keep trying and advocating for yourself and your pain management. Know that there are always options or choices with care, and maybe you need a different approach.

Wish I had something better or useful to say. All I can say is sometimes when it seems we can't make it through one more day, we do, we find a way, we fight the demons, we bounce back and we get through, kicking and screaming. But my gut is telling me you could use some calm music, or meditation music, or a funny movie or something. It is hard when you are in 24/7 pain and it rules your life. But an ounce of laughter can take you a mile, and a good song, can change the mood if only for a moment.

I will say another prayer and keep you in my thoughts.
B3

No matter what they said ,if you are in pain ER at least can't treat you temporary while a specialist sees you.
I'm sorry you are dealing with such of hard and tiring condition, I really hate RDD so much but I tried to keep my faith and never give up .
Look for what's best for you and remember ,we are here to help in any way we can.
Today is not one of my best days,honestly is bad but I realize ,many others are also suffering there why I'm here.
Belongs and gentle hugs with love Jeiska . :grouphug:

Sending prayers your way Firedancer79.

You too Jesika.

Thanks so much, I need so many right now ,my road is fill of rocks and obstacles but I trying my best to keep going and standing strong,life is so unfair and best things to do is just take one step at the time, I can't fix the world anyway so will,keep,just fighting back.thanks for you concern and beautiful prayers ,I truly appreciate ,:grouphug:

Also Firedancer check www.rsdsa.org for more help and for the rest,we are here.

Thanks everyone...
 

I really appreciate all of your kind replies, thoughts, and prayers. I believe nothing is by chance, and everyone who comes into our lives belong for a special purpose. I'm sad we've all crossed paths due to a condition like this, but I'm glad to have some people who actually know what I'm going through. ;)

I do meditate daily, and have a beautiful and energetic young little girl, who keeps me grounded. However, I feel like I have to be strong for my daughter, and for my family, as I think it scares them more than myself sometimes. Well, I'm suffering really bad and I sometimes wish I could just be selfish and have someone to be strong for me! I don't have that in my life. My husband left me a year after I got sick, most of my friends ran away, and even my doctors seem bewildered by me. Sigh, does any of this make sense? I feel like I'm rambling.

Yes, I am on quite a bit of medication, wish I thank my lucky stars I have at this point, because it literally saved my life. Story for another time. But, it only helps a bit, and I'm still suffering a 9/10. I haven't had any med changed in over a year. So, I feel like maybe that could help but nobody is willing. Frustrating!

Thanks again. I do hope this finds everyone doing ok today. It means a lot to me that you all took time to respond, knowing how much you are all suffering. Plus, energy doesn't come easily to us, so thanks.