Is anyone out there seeing help for RSD/CRPS pain patients?

[taaheatea]

I have suffered from Reflex Sympathetic Dystrophy since 1995. I ended up with a bilateral sympathectomy. It put me in remission for 10 years until a spinal injury which required emergency surgery snapped me right back into severe pain. I am having a hard time getting my specialists from Seattle, WA to Mayo Clinic to understand my condition. What have you done if you are a sufferer?

[Sheywh]

I’ve seen a Pain Management physician for 19 years now!! For my full body RSD How did you go into remission?? Can you explain this? Also was it in the first 6 months of your diagnosis of RSD? Thanks

[backhurtz]

I had RSD for 8 years- HUGE amounts of all kinds of meds, nerve blocks, treatments, tests etc.
it FINALLY relented by forcing myself to start using the limbs- very slowly, VERY painfully and after about a year of daily pushing through the pain- the RSD receded.
Eventually I was able to desensitize the limbs- regain use of atrophied muscles and joints- but it worked.

[Sheywh]

I’ve been up and pushing through the pain for years!  I learned many years ago it’s like arthritis you can lay around You have ti do what you can and a lot of times what you have to do!  I wish mine had gotten better from just moving around!  Maybe you were INE if the lucky ones and it hadn’t been a year and you were able to go into remission. Due to the RSD not being so outta of control when you received help Maybe that’s why you went into remission Ive heard if you catch it early in the first 6-12 months you can get it into remission..I wonder if that’s why yours went into remission so easily! I was 2 years out before they got me to a doctor that knew about RSD and could tell me what was wrong with me…Take Care God bLess

[backhurtz]

I had SEVERE RSD for over 8 years- UNRELENTING. It was suspected but not confirmed until 3 years in.
RSD is a hyper response of the sympathetic nervous system. I had ALL the symptoms, even someone walking across a floor or an air conditioner, a sheet touching the areas sent me into a spiral of unrelenting symptoms for years, despite the nerve blocks, medications and attempts to manage the symptoms.
I developed severe atrophy and contracture, lost the use of shoulder, arm, hand, fingers.
Yes, typically the best outcome is in the first 6-12 months.
That doesn’t mean though that anyone with RSD should give up hope after that window closes.
I sought treatment with the best RSD specialists I could find.
My discovery of slowly and incrementally desensitizing the RSD effected areas was purely accidental- but like I said- it was very slow, over an extended period of time- I began to notice changes- that the response to things that usually causes extreme response/pain lessened just a tiny bit- so I kept it up- feathers, silky cloths at first- for seconds, adding time as it eventually took longer for the rapid fire typical RSD response to come, progressing to other smooth fabrics/items, then trying to tolerate slight touch and attempts at movement of atrophied limbs/muscles. I won’t kid you, I spent a lot of time sobbing and in agony but eventually for whatever reason- I kept noticing minute changes until after months- I could see the benefits. I still, to this day have limited motion in my shoulder where the RSD set in and spread, but that acute then chronic cycle of amplified excruciating pain subsided.

[Sheywh]

Now with my pain pump and my determination I now after 20 years have a life!! I recently had to have the pump lowered as a back surgeon was telling me I had a severe back problem and that the pump line had to be severed to get to the inside of the canal where the problem was after they drug me around for 4 months spending money scared to death of surgery Since that’s how I got RSD in the first place in March 17, 2000 My RSD was never was taken seriously till February 2002…Now the pain management doctor I’ve had all these years has turned into a freak thinking everyone if his patients is drugged up!! I swear I can’t take much more of his attitude towards me 3 times this year Ive left his office in tears because of the way he treats me!! There’s got to be a doctor out there that doesn’t treat us like addicts!! I’m not the ones that lowered the pump and put me in Morphine he was I went in to the office this week He screamed at me why my pump was so low!  Why I was in Morphine he didn’t even act like he remembered lowering my pump and now bringing it back up See my back got better after some rest and relaxation after
My husband whom has Acute Myeloid Leukemia had his transplant 7/22 After he got home from the first hospital bought several months ago and I was no longer  doing everything alone.. For the first time in almost 2 months See he was in the hospital for over 6 weeks!! My back just quit hurting and the nerve down my left leg eased up and I stopped dragging it and screaming at every step So I told the surgeon it had to be my herniated disk and it was flared do to me having. To drag fro on the door water dogs daily I had all the chores on me Not just mine!! I was glad to not have the back surgery!! But my pain management doctor this year has flipped on me One day saying I’m so glad your better and your back isn’t hurting anymore!! Then the next time screaming at me for his drugs He even ya Ka me off the morphine said I was on to many drugs..Instead of winging me off of another morphine and giving me the 10% bump up He gave the 10% and took the morphine away All the while he knows we are hurting financially With my husband out of work for a year!! I’m my husbands only care taker and he informs me the pump is up in November Ive never asked him for anything Ive always complied I asked him to wait till closer to October to do the pump surgery He didn’t remember my husband just had a Bine Marrow Transplant He forgot I was the 3 month care taker and can’t afford to go anywhere and attract anything!! Now I get to go to a hospital on his timing and have a 4-6 weeks healing surgery of a pump replacement and my husband gets to figure out what to do for himself I have to go to my husbands appointments with him 2 times a week 4-6 hours a day As he has trouble remembering things He’s weak he has good days and bad days I think a pain management doctor should be there for you not against you!  He new this pump was up this year and he could have done it before this!!  I literally pray my RSD goes away Ive desensitized myself mentally to a lot of things to help me be able to survive for the last 21 years!  He said we would just take it out He’s crazy you still have to cut me open and I still have to take care of my husband!  There’s got to be a better doctor out there then this!! He gets bad at a patient and he comes in and chews the next one and the rest of the day they all get chewed out!! I come to him for relief and trust if he can’t trust me I think I need another physician I mean I don’t even take break thru pain meds and haven’t in years I get one 30 count of Tylenol 3’s a year just incase that’s it!!  Did your doctors treat you this way?? I would Ph e to know if it’s just him or all pain management doctors I’m nowhere near a drug attic I bust my butt in pain everyday bro have a life and care for my family the best I can!  Right not my pump is at 4.8 versus it was at 7.65 Nothing for pain  but the pump now and him stressing me out the week my husband couldn’t be in the room my baby brother died the before My nerves would treat her be in pain than deal with him anymore!! So I’m seriously just wondering are all the PM like this? Or does he have a psychotic problem himself…I want to turn it in but I want to be cared for too!! Any advice 19 years with one doctor is a long time for him to still be treating me this way!  I do the UA’e I pass all
of them!  I’ve never missed appointment I showed up With  flu strep and pneumonia one time wanting a face mask and he canceled on me!  I’m always compliant Ive never ever done anything to make him treat me this way I worked medical internist before this happened to me!! I don’t want the drugs I have that’s why I chose the pump!! Anyway sorry for no el he’s really got my nerves shot these days!! I’ve never had a doctor you couldn’t work with That every thing has to go his way period always!! That don’t make sense talk to me like adult talk to me about my medications instead of the lady you trained to fill my meds online not even a nurse!! Heck ask me how I am today like the doctors at my husbands office gezzz!! Take Care

[backhurtz]

Unfortunately, finding a new pump doctor after having a pump placed can be very difficult. Since you need yours replaced- and are unhappy with the treatment you are receiving , I would start consulting with a new doctor now. Perhaps they can do the replacement surgery and assume ongoing care.
I am sorry for all you are dealing with and the loss of your brother. Having to be a care giver to your husband on top of everything and the seriousness of his condition only adds to all the stress.
No , all pain management doctors are not like the way you are being treated. If they were, patients would seek other avenues.

[Sheywh]

I’ve been with him for so long He’s always been a little strange to say the least..I’ve always worried about leaving him.. As you never know what all is in your chart after 19 years of being with him I just want to be treated like a respected human being!! He has a big time problem with women..He’s not this way to Men!! Which is very strange how he can be so dominating and cruel to a patient that’s done everything right for 19 years with him..Instead he treats you like your drugged up these days..I don’t understand why he thinks it’s so right to treat a woman so badly that she comes out of his office 220/125 Blood Pressure I do think I need a new one I’m so scared of getting another worse then him..I want a doctor to take the time to discuss my pain and the procedures .I want a doctor that trust me and knows I’m not doing my medications wrongly!! I can endure a lot of pain I mean a pump this low and I can’t afford to keep going in for bump ups right now!! I don’t understand what goes thru his head anymore!! I do know he sees a average of 80 patients a day I think that’s why he can’t remember you are anything about you from one visit till the next!! I live in the Dallas Texas area If anyone can offer a good recommendation to a doctor that literally cares about its patients and take the time to make them feel in charge of there on pain and medications and pump I would love to know I hate it when he decides I do or don’t need a medication or a bump up Or he will lower my pump without consulting me Just say you won’t know the difference and if you do it’s in your head!  I’m dead serious this is how he speaks to Me on those days he’s frustrated at something!! I would love a female pain mgmt doctor that’s for sure! I’m on Humana Choice PPO /Medicare Just incase someone knows a great PM Thanks fir your input on this I was beginning to think all these PM doctors are like him!! Take Care Thanks again fir all
You kind words regarding my family much appreciated!  

[backhurtz]

You can try searching on the American Pain Physicians Association - or try a Google search  for pain management physicians who manage pain pumps for your location. Sometimes hospitals can suggest an anesthesiologist who also does pain management on the side for complex pain patients.

[mersilkee]

Hi,
I have RSD also.  I've had it for about 10 years.  Before that, I was having some pain but I was still able to work and go about my life.  No one could figure out what that pain was.  I went to a GYN and she thought I had adhesions from  previous surgeries.  So, she did a laproscopy, said she saw more adhesions than she thought and did a laparotomy without waking me up and asking me.  When I woke up, I couldn't walk for a couple of days then I started having a terrible pain on my right side in the lower abdominal area that extended over to my back.  I went to many doctors to find out what it was.  No one knew.  I had to quit work.  Finally, I was sent to a psychiatrist who specialized in pain management.  He put me on Fentanyl patches and Vicodin.  In exchange for this, I would have to endure meetings with a psychiatric nurse who was always trying to come on to my husband.  Then one day he told me that I would have to start having more sessions with this nurse which weren't covered under my insurance.  So I said goodbye to him and he gave me a three month supply. So I heard about another pain doctor in the area from someone on a pain support group.  He was an anesthesiologist.  I also had been going to one that only did injections.  He tried hard to figure out what was wrong with me but he couldn't.  He did many different injections, made me sign a pain contract, gave me enough patches to get by and also added a breakthrough med which I don't remember.  Unfortunately, he could be very hard to get along with.  One time I had to wait all afternoon in the waiting room to give a urine sample and when they were about to lock up to leave they realized I was there.  But, if my husband was with me, things went pretty well and at least he was open to my husband's input.  We had done alot of research and suspected I had RSD but were told that I couldn't because my pain was abdominal.
We moved to the east coast and we went looking for a pain management doctor as well as someone to figure out what was causing the pain.  I saw a endocrine neurologist in New York and he diagnosed me as having abdominal migraines which was good but it didn't explain the right sided pain.  He recommended a pain clinic in New York which is a top rated pain clinic.  I went there and it was wonderful.  I had to undergo an extensive history and physical plus a couple of in office procedures to help discover my diagnosis.  The doctor told me I had RSD.  He said it was hard to diagnose because it was in my abdominal area and many doctors don't know much about RSD.  He has done everything possible over the years to try and help me with my RSD.  I have all kinds of treatments, different meds, different combinations of opiates.  For several years my RSD was under fairly good control.  I couldn't work but I was able to drive my son to lessons, etc.  Then about two years ago, it started getting worse.  No matter what he did, my pain has not gotten back under control. Earlier this year, I was diagnosed with a fatal dengerative brain disease and my husband lost his job.  We have been living with various relatives which has been stressful and we are in the area we use to live far away from New York.  I am flying to see my pain doctor because that is how important he is to my life.  I don't know what will happen if my husband doesn't get a job.  My parents believe I need to get off pain medicine so I don't think they would give me the money to go to New York.  I wish I could offer you some help.  The only thing that I can advise you is that you should keep looking for another pain doctor.  I have been to the Mayo clinic, they didn't help me.  I have seen at least seven pain doctors.  It is hard to get recommendations over the internet these days because of how the DEA is conducting witch hunts.  I am going to a pain clinic that is established and has been around for a long time.  They are careful to meet DEA standards and they are very compassionate which matters alot to me.  I used to belong to a pain group and the guy who started the group drafted a letter to congress and was trying to get signatures.  The DEA went after his pain doctor and shut down his practice.  Therefore, it is harder to find a smaller pain clinic these days.  If you are able to travel long distances then you probably could find a good pain doctor.  I wish you the best of luck.

[Tuckamore]

Hi Taaheatea,

I am sorry that you are suffering with the pain of RSD. I have heard it can be crippling.

I am uncertain as to what you mean when you say that you are having a hard time getting your specialist to understand your condition. Do you mean that they are ignoring your pain and not accepting your belief that the RSD has returned? Have you sat and discuss with them how you feel? Sometimes an open approach will provide you with answers or at the very least give you an insight as to their thought process.

In my opinion if your physician(s) is not listening to you than you need to find one that will listen to you and treat you with respect and understanding. That opinion does not change regardless if your physician(s) are from one of the leading and best facilities in the USA or one of the not so best. Physicians do not treat us out of the goodness of their hearts, although some are extremely kind, dedicated and caring. Physicians are hired by us to perform a service. If you find that service inadequate or lacking than terminate the patient-doctor relationship and seek out another.  

My opinion only, and it may be a bit crazy but too often I think we view physicians as more than what they actually are.  If your physicians are not listening than why continue to employ them? If my PCP did not recognize me as a fellow human being and listen and act on my concerns she would not be my physician. I can pay anyone my 125.00 for less than satisfactory treatment. So I suggest trying to talk with your physician(s) first. If that is not effective, look elsewhere.

Others will post their opinions and suggestions. I wish you the very best and hope you will soon be more satisfied with your medical care. Please keep in touch and let us know how you are doing. I will look forward to your updates with interest.

Take Care and Good Luck,
Tuck