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.

Even the greatest warriors lose a fight once in their lives.
If someone left you ,means that person wasn't the right for you, there always a purpose for everything ,now you need to focus and the much you need to regain about yourself.
Destiny place the right people at the right time,soon will be the right time ,for now ,rsd became to be your partner and you are not selfish,we are suffering too much and sure we can't only do so much,but selfish,we are not selfish. I always wonder who will ever step on our shoes just to try how long they can last and I bet no one will ever try at all.
Be you own person,be your best friend and love yourself by not allowing anyone hurt you because you are sick ,those who decide to leave are the weakest persons you will ever meet, only a true and honest soul will stay at your side,don't regret anything that happened good or bad, you overcome that's what matter.
Here is a huge and friendly community, left few moths ago for a misunderstanding , I realized lately it wasn't a big deal and the person who created the situation is not even here any more. Disappointment is everywhere but is up to us to make a difference in our life's and be a new advocate for rsd and help others,that's the best way to live our life's,offering support and be a source of comfort.
I'm also and rsd patient ,type 2 or label 2 now,but I still see days with a shinny sunny day and many others I can't even see outside my windows but I believe someone needs me and I get here or there, I'm a people person,my job was everything for me and I lost it due to my rsd but still hurts and I try to start all over again, I think I don't deserve this but it what it is.
Gentle hugs and always be hopeful and see the bright side ,there is always one,take care ,with love Jesika .:grouphug:

Jesika,

Thank you for the encouragement. Yes, it is true that we find out who we really are when faced with a condition like this. We find out who others are too, for good and bad.

I'm so sorry to hear you lost your job. I lost mine as well. It's my theory that we are meant for something bigger. :)

I have the type 2 as well, I find that interesting because I was told it is really rare.

If you don't mind, what have you tried that helps? Hurts?

My history is:

Discectomy/laminectomy l4
Many series of lumbar blocks, sacroiliac joint blocks
Anterior/posterior fusion s1-l4-l5
Spinal cord stimulator put in
Spinal cord stimulator taken out

Thanks and take care,
Wendy

Well, I had different treatments,physicals therapy, lumbar blocks , acupuncture ,medications ,scs is the best still in my case option but unfortunately had a second surgery to repositioned the battery from buttock to abdomen,now works much better and also taking my medications ,but physical therapy is essential and that I can't do too much,my injure foot has not cardlige and I have bone to bone rubbing ,scs covers nerve pain but no bone pain, I was suggested few moth ago a second device but I'm not ready for more surgeries ,is really exhausting and recovery takes a while, after the repositioning I had so bad luck,I had a gallbladder surgery also in my abdomen and gosh I woke up with such of pain,lucky I was treated so well by both dr and anesthesiologist ,they avoided pain the most the could and follow up my case real closely to prevent any further pain,but another scs,I'm not sure.
That helped ,also tens unit,if you can have much relief with scs tens units Is a great option,acupuncture as well work for many,not of me :( I was in agony during each therapy and hated so much those ugly and useful needles .
I also find meditation to work during flares ,I listen to soft relaxin music ,tibetan singing bowls works for me and don't take my whole pain away but relaxes me.
All treatments are different for each patients and also we al manage pain in different ways, I'm by my own choice not taking any stronger pain killer but tramadol and meloxicam , other than that my meds are not really strong, we all also manage meds differently,I had allergic reactions to hydrocodone, so no NorCo or Vicodin for me, but I guess I'm more pain tolerant but doesn't mean I don't have pain,hell yes,and many bad weeks but I try my best to be positive and let is pass,don't battle it ,just let the flares pass.
I hope I answer your question and helps you a little,now I have one,why your scs was removed?
Gentle and soft hugs,if you have questions I'm here don't mind just ask,we are family and we try to help,with love Jesika .:grouphug:

Thanks for letting me know what you've tried. I feel like I've exhausted a lot of treatments, but hope to still find the right combination for me. I'm not there yet, but I choose to believe I will get there.

I have tried the tens unit, with no real results. Nothing good or bad.

Yes, physical therapy is very important. Have you tried pool therapy?
I was in PT for a year, and the pool therapy was nice for me. However, my pain dr doesn't want me in any right now because he says I'm not in good enough condition.

I'm very into meditation, I spend at least an hour meditating without fail each day. So, I was interested to hear you have some success with Tibetan music bowls. In fact, I've looked at some and would have tried by now, but those suckers aren't cheap. :D

My spinal stimulator was taken out because I had constant stimulation in my ribs and a huge increase in the burning pain and crps spread. I'm rather thin so I was warned I might have issues. Lead migration was mostly to blame.

The next surgery recommended would be the drug pump, but I have major concerns because of my weight and also because the stimulator really screwed things up.

Hope you are having a good weekend. I saw you live in Ca and I have to say I am so jealous. If I could move anywhere, that's where I would want to go.

One more thing, I was looking into hypnosis, but I'm not very suggestible.
So, I dunno.

Also thought about acupuncture, but am concerned it could make things worse.
Was it really uncomfortable during? Does it hurt afterwards?

Hugs,
Wendy

Honestly ,pt was great,meditation works as well, recently I watch a movie called the secret also help,mostly educating your mind on focusing on things in a positive way,real,good by the way ,medications and relaxation does helps,but acupuncture for many did for me :eek: hurts as hell,not wouldn't get it anymore, :( I was almost crying and still remember with such of horror the last needle,years,but other people had benefits ,not me :confused:,still wondering how I let that happening :confused:.
Well,I hope other treatments soon get some relief and also your meds work as ell,all combine makes a difference,sorry tens didn't work at all ,and I sure scs might be beneficial but maybe the rep didn't work enough in getting the best covered areas for you,sad when that happens. Everything can be risky ,but as long as dr follow an stricter protocol and about pain flares ,I thing a change of spreading is minimal but never know, always do what you know is bets for you,no all people react same way.
Hope you also good weekend and Cali weather is so crazy,is raining in August!!!:rolleyes: well I like weather not too hot,not too cool,so is perfect for me now,as long as i can stay inside and not need to go out is fine.
And acupuncture in my case ,:hissyfit: won't ever happens.
Best wishes and gentle hugs,remember relax and rest as much as you are able,with love Jesika .:grouphug:

Oh wow! It sounds like acupuncture was really no good for you! :eek:

But, you never know, it could work for me. However, my gut says no and I have learned to listen. Our subconscious is way more powerful than our conscious mind.

I've watched The Secret many times now. I enjoy it too.

Also, when I meditate there are times I'm able to astral project, and it is AMAZING!!! :D
I used to be able to do it three times a week. But, for some reason I'm having a hard time letting go. :confused:

How has your weekend treated you?
Wendy

Oh wow! It sounds like acupuncture was really no good for you! :eek:

But, you never know, it could work for me. However, my gut says no and I have learned to listen. Our subconscious is way more powerful than our conscious mind.

I've watched The Secret many times now. I enjoy it too.

Also, when I meditate there are times I'm able to astral project, and it is AMAZING!!! :D
I used to be able to do it three times a week. But, for some reason I'm having a hard time letting go. :confused:

How has your weekend treated you?
Wendy
:Yahoo: :hug:

Hi,

My heart goes out to you. If you feel you need some additional help don't
hesitate going to the ER where out of control pain can be treated. Just
tell them you are not interested in being treated like a drug seeker but if sincere about wanting to know about CRPS, most hospitals have
access to obtain information on it. I know on one occasion my daughter
who had CRPS type 1 was having surgery for another medical condition
when one of the nurses asked her what CRPS was. The nurse left the
room then later returned after looking it up and expressed sympathy toward
my daughter. The world is full with its share of jerks but there are also
some wonderful and caring people in the medical profession as well. God
bless you. I know you are scared but you are not alone. May our loving
mother, father God hold you and be with you and comfort you during this
crisis in pain. :hug:

Joydee.
I'm so,glad ER,nurse took time to do a research for,your daughter, after my bad ER,experience,I carry with me a print out of what rsd means and also what precautions can be follow do to the serious pain we get. It's hard to reeducate dr ourself about rsd,Many dr don't even try to listen at all,but glad your experience was good.
I hope,many more ER facilities get prepare for patients like us, we do require so special way of handle needles ,blood pressures devices , injuries ,surgical procedure and we can't do it all by ourself ,thinks is ,educations is the key and we can only get the best knowing what really rsd means and how works.
Gentle hugs and hope better days with less pain.with love Jesika .:grouphug: