Ive Recently Been Diagnosed With This Disease!!


I've been diagnosed with Complex Regional Pain Syndrome but I really dont think that its type 1--I think that its closer to being type 2. This disease has taken over my life, if you call being in pain 24/7 a life.  I dont think that the doctors around here are sure of how to treat it. Most of them just want to do a surgery that they know isnt going to help but most of the time only make things worse. They really need to listen to what we the patients are telling them & Im sure that the office visit would be better for both of us.  I would like to hear from other people who have experienced the same things as I have with the doctors.  I know that we all have to have some horror stories with the doctors.   I really hope that we are able to trade stories & maybe some helpful information.  Thanks for letting me ramble but hope to hear from some of you soon.


tiredofpain07 tiredofpain07
46-50, F
19 Responses Sep 26, 2009

Type 1. Also known as reflex sympathetic dystrophy syndrome, this type occurs after an illness or injury that didn't directly damage the nerves in your affected limb. About 90 percent of people with complex regional pain syndrome have type 1.

Type 2. Once referred to as causalgia, this type follows a distinct nerve injury.

great page to follow is


I have a very good doctor who understands this disease ,she help by changing my meds and listened to me how I feel,she never push me away ,she ever phoned me at home.I suffer a lot with the depression and chronic pain.

I had neck surgery in aug.2012 and was never able to return to work. Kept going back to the doctor and all he wanted to do is another surgery and then another.
I have been to 7 specialist and go to another tomorrow. No doctor can or will tell me any thing. Each dr. tells me that they are not finding any thing.
3 weeks ago my GP told me that he thinks that i have CRPS so he made me an appointment with a specialist so i will find out what he thinks.
My neck hurts, left side of back, left arm and left leg burns. I am taking enough meds to knock a horse out and nothing will stop the pain. And i forget things as soon as i start to say something. Which that could be from the meds too.
My wife is such a wonder for me. She really helps a lot. She is really the only person that see's the pain i am in and she feels my pain and cries with me.
She goes to ALL dr. visit with me and she has heard how they talk to me and the things they say. She is a fighter now and she will tell the dr's off. .
I feel all of you guy's and gal's pain. My life has changed so much since Aug.
May be some day soon we all will be better. All we can do is hope. Take care.

I agree, I went to the neurology dr. and she would ask me a question and when I went to answer it, I got two words out and she would go yea I got it. Then when conducting her test I said I have a tendon right here on my wrist that is really swollen right now and preventing me from straightening out my hand.. Her response was Oh that doesn't matter. Um ok it is causing excruciating pain, but I will take it up with the million other drs. I see! She was so bossy about my whole life, telling me how I should be dealing with my diabetes, I was like I do fine I am 5'8 and wear a size 3. Lets concentrate on what is going on here. She was a know it all and ignored everything else. Then for the first orthopedic dr. he thought he was the man, tell him I am in a lot of pain and says yea I don't know ligament tears take a long time to heal, oh ok 3 months sure! but rubbed in my face how he knows he has been doing this for 15 years, ok why don't you go get another face lift, and stop hitting on me you are gross! So some drs. just don't care, ok sorry to rant on here but I agree with the dr; issues, its a fast food place in their office.

I have read your e mails and agree it is difficult to find the correct diagnosis, and pain doctor to manage the crps. Recently diagnosed in august 2010 with crps I was fortunate to find young doctors just out of med school who recognized it as crps and "not a frozen shoulder." My first older orthopedist said to suck it up and work through the pain. I am not saying all older doctors are, but for me this was definitely my concern, I believed in my pain even if he did not. I knew in my heart that this wasn't a frozen shoulder but nerve pain, not muscle pain. I searched out my next doctor, found him to be young, smart and very kind. The right doctor is out there, you just need to find him/her. <br />
Remember you are not crazy and the pain is real. <br />
<br />
My spinal cord stimulator brought some relief but you must manage it daily just like any other illness. Good days bring less meds, say 6 hour intervals, bad days, 4 hour intervals. Find strong people to stay by you (friends), have your family believe and support you, and know that this is real, although it is not always visible "like a broken arm is, or a bulging disc," but it is real and you will get better. It will get better, it may take time, but it will get better. I found several great Physical therapists who could touch my upper right arm some days, and some days not at all, but never give up. Pool therapy is the way to go, you will hate it at first but just use your meds to work through the sensitivity little by little each day, and it keeps the muscle spasms friendly. My upper right extremity is in a locked 90 degree fixed position, and recently due to a fall has spread to my left foot. Btw I am right handed, well at one time! Never give up! It is your body and you will find what works best for you! I hope this helps in some way, because it is life changing, so live each day without any regrets. Today the pain is a 7/8 but I look forward to tomorrow...

I really feel for you folks. I never imagined how much my injury was going to effect my life. I broke my ankle Oct 2011 and although the bones healed well I was unable to progress from walking with crutches. Doctor seeing me at NHS hospital just told me to keep on going and I would walk. I suspected that something else was wrong and asked my GP to refer me to orthopedic specialist privately. CRPS was diagnosed and I have recently spent a week in hospital with a nerve block. Unfortunately physio supplied was a bit hit and miss and I finished up with a little more movement in my toes, the level of pain is the same, just in a different part of my foot. I am seeing the pain management specialist again in 2 weeks time. We are using money we had put away for our retirement as along with a lot of people our pension outlook is dire. Good luck to you guys. I will let you know if I have treatment that makes a difference.

Hi! I have been where u r since 99. Ive seen over 20 specialist, supposedly the " best" all over the U.s. in this field. Maybe they were but it never worked for me. I've done the therapy the clinics the units and always on unbelievable quantaties and doses of presc<x>riptions. I am not able to do implants or stimulators due to the extent of damage the continuous spread. I have been permantly disabled since 99 i was working full and part time, was in college and has just gotten married in 98.the meds have not helped I max them out then start over. I haven't had less than a 7 that's a good day and I'm out of options but i will still keep looking. The key is support and having at least one dr. that you can trust and is willing to keep trying. I have returned to the one that diagnosed me right before it spread to all of my limbs and extremities at least 15 times when the next dr failed. Im with him now. So dont give up there are good people out there who want to help & who understand its your life and risks. Don't be afraid to speak up, ask ?s and say no if it's not right for you but don't be too quick to dismiss ideas. Life makes this a hard disorder to live with but you learn what the specific factors r for u <br />
and do the best you can & never give up! Good luck!

I really am glad i found this site. I have felt crazy for years trying to explain to people why im on crutches but there is nothing wrong with my leg. The pain is ruthless! I have had over 6 spinal blocks starting from when i was 10 and now not only is my back stiff but my leg is still in and out of extreme pain. I HATE pain killers and thats all my doctor knows to give me. But I am only 22 years old. I want to be able to go to work, school or even just around town with out feeling drugged up. Im to the point where I can almost handle the pain unless it go ultra sensitive in that case I take the pills and hope to god I can sleep through the worst of it. This is no way to live. Im glad i finally see other people who understand this stupid thing. Thank you guys for posting on here. It really made me feel better.

I truly understand what you are feeling i have been diagnosed with crps 1 after having a car accident in actuality i went to three different doctors for my pain and my injury did not match my pain they kept saying. So they started me on terapy three times a week and my terapist was so purplex because i was not making any progress acording to my injury. So my terapist consult with different terapist and the terapist diagnose me but of course my current doctor had to confirmed it to be true.I am seeing a pain specialist and i had a nerve blocker which did not last. now on a regimenof medication tseems to help it is taking the edge away so do speak. Your best bit is to get a referral to go see a pain specialist they may be able to help. Uof M doctors had helped.

Just a short comment -one that i think is of value ---As long as you have no drug problems or predisposistions towards this- you should be able to find a doctor (somneone that is neither a therapist nor pain management specialist) who will perscribe what you need. You have to rember however that over time tolerance can be a nasty matter and moderate your own dosages--when things hurt they hurt but when they dont --take a pass on the meds --dont make the pain management part of a routine unless you are in some acute situtaion or having a flare up and then...There really are times when you have to decide that you just dont have that pain ...dont look for it -because you will find it

what helps you the best? I am so new to this and want to know what I am talking about at my next visit

Aquafit in water @ 93 degrees, Epsom salt baths help the pain. Warm moist heat pads work really well to relieve pain. Mindful Meditation helps with pain and sleep.

I use exercise therapy to control the pain. You could try that?

what kind of exercise? I am on a hand one, but most of them are intolerable, but was told by neuro dr. to work through pain

The problem is that Doctors don't know enough about the condition. I was diagnosed 18 mths ago and thankfully I have a doctor that listens and tries to help, but they just don't have the information and history to be able to treat it. Also, the condition from what I've learnt changes greatly from one person to another. Some people are in constant never ending pain for years and then it spontaneously ends, other people can have rounds of it that though not continuous, it will be with them for their whole life.<br />
I know how much it sucks when you feel like you're not getting anywhere, but as stupid as it sounds, doctors are trying to help, they just don't know how too.

writingislife,<br />
I am going to a pain clinic but the doctor that is " in his words" treating me---doesnt listen to me. He insists that by implanting a device in me will work--the only problem I have is that he neglected to tell me that he has to cut out part of the spine for him to put it in.<br />
Ive talked to people that have it & they say that it doesnt work & that I should run & run fast the other way--even though Im unable to physically to do that.<br />
My hope is that I can soon change doctors & get someone that will actually listen to me.<br />

around2,<br />
I also have 2 herniated discs & a pinched nerve in my back. My pain has gotten so bad in the last 8 months that I cant even have water touch my leg, let alone be able to soak in a nice hot bath----but believe me I would absolutely love to. 1 year ago I was able to get into the tub, but not now. I was getting my "baths" outside on a lawn chair but it is too cold for that now, so I get a sponge bath for the lack of a better word. Found out the hard way that having water touch my leg would cause me pain. So now I dont let any water at all near it, which is hard when you at a doctors office. Thats the only time I leave my house. Thanks again for your words.<br />

thornyasarose,<br />
Sorry that it took me so long to answer you but Ive been in alot of pain & the weather doesnt really help it any. Youre right it does take a doctor that actually wants to help you. So far Ive not been able to find that one yet, but Im hoping that I can find soon. Ive also had the epidural shots & theyve not helped at all, as a matter of fact Im sure that its made my problem worse, but then again its my word against worse.<br />
I appreciate what you said about always having someone to talk to. My email addy is tiredofpain07@yahoo.com I hope to hear from you soon.<br />
Thanks again.

doctors are unsure of how to treat this disease unless you go to a pain clinic.

Oh man you two make me feel bad...I was gonna talk about a herniated disk, with severe sciatic pain down my right leg and foot that lasted for 24 months...but it doesn't sound like anything as bad as you two have...and man was I miserable....their are some enzymes out there that help with "moods"...maybe they can help you cope with chronic pain...a hot tub to relax halped me stretch...maybe will help a little for you?

I have felt your pain, oh! how I have felt your pain! And I know how frustrating it can be, as the saying goes, "Been there, done that." And I NEVER want to go back! I used to use THREE TENS units, and still could not sleep. I don't mean three leads or three patches, I mean three different units, each with 2 leads,four patches. My health history is not at all common, and I battled bone pain from my youth, but after MRSA growing in my knee,and not getting properly identified on culture (lab error, it got lost), I found myself in unrelenting pain. Now, I am able to tolerate A LOT of pain, I have survived 8 bouts of meningitis. But once this happened and joint destruction began and inflammatory reactions went haywire and an autoimmune reaction took over,yadda,yadda,yadda....then came cadaver bones, and surgical procedure after surgical procedure,after surgical procedure and another one,too (all in one year)... Sympathetic Mediated Pain Disorder (or Reflex Sympathetic Dystrophy). Finally, it was actually the orthopedic surgeon that made an appointment for me with the right pain specialist (I had seen two, they shook their heads, did a few blocks, said I needed a spinal stimulator or spinal pump with a med...but since I get meningitis so easily they can't safely do that). Now, rumor was this pain specialist was not at all a sympathetic man. He examined me, looked me in the eyes, and said to me, "First, I want you to know that I believe you, that you are in pain. Second, you are a very brave woman. Now, I am going to start you on......" And he named several meds, one being round the clock narcotics, a muscle relaxor,antidepressent....and DON'T miss a dose he says. I know my eyes were popping out of my head by then. Then he said to me, as kind and gentle as a mom talking to a baby, "This is the poison you have to have to live." He was right. As much as I didn't want it to be true, it was. It took me TEN YEARS to finally get there. Now, let me assure you that it also took me ten years to get THAT bad. I mean, I worked for 9 of those years (I am hard headed -British and Irish ancestors,you know). But probably should not have for quite that long. But, he also was the THIRD pain specialist I had seen. So, I guess what I am saying is this: be honest. If something is not working, say so. (I went and bought 3 TENS units instead of saying, "no doctor, that seizure medicine does not help" because I didn't want to be a "problem patient"). If you don't tell the doctor the truth, he/she can't help you. And if he/she ISN'T helping you, see another doctor (but not too quickly, finding the right combination of meds takes time.) And enjoy every moment you can. Laugh. Read good books. Keep a journal for reference, you may not need it until 3 years from now, but there may come the day it is an invaluable reference tool. I don't know if this is going to be helpful to you or not. I hope so. Be your own best patient advocate and friend. And if you ever need a sounding board, shoulder, word of encouragement...message me. You don't have to go it alone. God bless you and keep you!