Reflex Sympathetic Dystrophy (RSD)

[livingwith]

I have had CRPS for 20yrs/5mths/8days. I spent 17 of those years undiagnosed. An ankle injury/lymph node removal is responsible for my CRPS. Since diagnosis in 2004, it has been a true struggle to find the right care.
I have become well eduated and active with the CRPS community and there are many ethical issues involving pain mgt, however, the biggest concern/complaint is discriminatory care. I have turned a corner with my treatment and it is as good as it is going to get. I keep my depress...Read the full article

[MedicRNsWife]

I was Dx'ed with RSD in August of 2007. I had surgery on my left arm on July 25th 2006, and the pain after surgery never went away. It changed. From sore post surgery pain to a burning pain about a month after my surgery. I just got my 2nd nerve block last week. I got the first block in November 2007. I am married to a Paramedic/RN, and we work at the same hospital. I do registration for surgery. My husband was not very happy about the amount of different drugs that I was put on pryer to my nerve block. My Pain Mgnt Doc does not believe in using pain meds like lortab/vicoden to treat RSD. She says they dont help. I beg to differ. While I was on the pain meds, I was able to go to work every day to BOTH, yes that right BOTH of my jobs. I was working 40 hours a week at the hospital and another 20 hours a week doing pre-registration for surgery patients by phone for another hospital.

Did it take the pain away? No. Was I able to live a better quality of life while on the meds? Yes. I think the meds fooled my brain just enough for me to "make it through the day." Now that I am off the meds, My arm pain seems to be all that I can think about some days. Like today, my arm is very cold to the touch, yet it feels like it is in hot hot scalding water. I have a thing that I use to take the temp of my skin on my arms, today my right arm (non rsd) is 98.7 and my Left arm (rsd) is 81.2. I have found that a heating pad helps a little bit, and every little bit counts when you have pain 24/7!

I dont feel like I can talk to my husband about this, because he takes care of people all night long that are in some kind of pain. I am sure that he does not want to hear me gripe when he gets home from a 12 or 16 hours shift about how bad my arm hurts, and that I know I would be able to tollerate it easyer if the Dr would give me something for break through pain, like lortab/vicoden. I have tried to talk to him in the past and he just rolls his eyes and walks away, or changes the subject.

I dont get a "high" from the pain meds, I am just able to go about my day in a normal way, doing what I would normaly do before I got RSD. Why is it so bad for me to want to feel better, and to not hurt as much. I was on pain meds for 14 months. and I never ran out too early, or asked for a refill too soon. I took my pain meds as if they were antibotics, 1 pill 3 time a day. some times less if I was having a "Good arm day."

Speaking of that arm, I am going to have to stop typing, my arm is getting very cold, and I need to put the heating pad on it for a while.

With Love for all with RSD
Suffering in Silence.

[G0J0G0]

I have had CRPS for 20yrs/5mths/8days. I spent 17 of those years undiagnosed. An ankle injury/lymph node removal is responsible for my CRPS. Since diagnosis in 2004, it has been a true struggle to find the right care.
I have become well eduated and active with the CRPS community and there are many ethical issues involving pain mgt, however, the biggest concern/complaint is discriminatory care. I have turned a corner with my treatment and it is as good as it is going to get. I keep my depress[hc_livingwith=livingwith.neurologychannel.com|/rsd/20080307_4307||20080307_4307]READ[/hc_livingwith]

Hello peace for pain,
First the question at the end of your post, has anyone had to deal with this, YES and every day? You see the almighty doctors feel that this disease is in the head instead of the affected. The only thing you can do is keep trying. It sounds like a clich'e but, nothing else will accomplish what you are looking for. May I suggest you go to the PEER to PEER section of this web-site, there you will find scores of people that feel every one of the emotions expressed in your entry and more? RSD attacked me after a "simple" ligament repair, yeah right. I wish I could send this simplicity to the doc that unlocked the door to this monster, LOL. All kidding aside, on the P2P section of his site you will find a world of people with compassion. You might not find the doc you are looking for but I have found talking to people that understand you helps and enables you to look beyond the fire, if but for a moment. Here is hoping you find relief and that SOON, G0J0G0. God Bless.

[wollfy]

DEAR SUFFERING IN SILENCE,

I SUFFER JUST LIKE THIS ENERYDAY AND THE PAIN MEDS DO DULL THE PAIN FOR A SHORT TIME ANYWAYS. I DEFINITLY KNOW WHEN THE ARE WEARING OFF. AND I UNDERSTAND ABOUT THE DEPRESSION, BEEN SEEING A THERAPIST FOR AWHILE NOW. I FELL THAT TALKING HELPS ALITTLE.
I FEEL FOR YOU AND UNDERSTAND I HAVE ONLY BEEN GOING THROUGH THIS FOR A LITTLE OVR FOUR YEARS NOW. I'LL KEEP YOU IN MY PRAYERS. BEST OF LUCK TO YOU.

I FEEL FOR YOU,
KIM

[savagemama]

Do you have a current primary physician that believes your have RSD? I've found the "pain clinics" in our area will not accept applications at all unless your doctor refers you, and they know the doctor and trust their opinion. I think that's the way I got seen at one (although my insurance later refuced to pay for treatment anyway)

You have insurance right? Call them and tell them you need a referral to a pain clinic or private pain management specialist that will take you without a lengthy application. I now see a private doctor. Because "pain management" is a relatively new field, many doctors that have private practice are actualy trained in another field, but later trained in pain management too. My current doctor is an ortho, sports injury doctor. My past one was an anastesiaologist. So try calling ortho or sports injury or anastesiologists in your area & see they they also do pain mgmt or know someone who does.

I agree with what you said, how they probably do this screening because they're afraid of "drug addcits" applying and just walking in, saying they have pain, free drugs. But if the process is weeding out real patients too there's something wrong. Did these clinics tell you why they won't see you? Lack of medical records? Don't take your insurance? Not accepting new patients? It seems like they should give you some reason & give you a chance to remedy it (if its lack of records etc) or appeal if you feel it's unjust.

I also am having a hard time with acceptance, it's been 7 years for me. I'm 27 years old and have a 9 year old son. I was working still until 2005, I'm now on SSDI. And it's just so hard realizing at such a young age I'll probably be like this forever. And I've been having new pain in my mouth the past year, no one knows if it's also RSD or what it is. Painkillers just work a while and wear off, it's a constant battle to keep the pain down & not be taking 10 pills a day of different meds. But I'm starting to come to a point of acceptance, and hopefully helping others manage & accept too.

Good luck to you. Take care.

[savagemama]

That's sickening your doctor would treat you like that. I know some specialists are against painkillers, and that's their right. But you as a patient also have rights and you should really look for another doctor if this is the sub-par treatment he gives you.

Here in SF all the major hospitals have a patients bill of rights. One of them is you have the right to ask for pain control, and they need to comply unless your symptoms don't warrant it (RSD warrants it). I've only had 1 doctor refuse painkillers as basic as Vicodin or Lortab, and I swear he was a sadist. He would tell me tough it out, who cares, only drug addicts want pain killers, and I finaly said screw you & reported him to the licensing board for harassment & not controlling my pain. I was told he can refuse to give me painkillers but he cannot tell me things like suck it up or accusing me of being a drug addict with no proof. On my last appointmnet he had taken all my painkillers away & told me I had 2 options. If I'm really in pain, stay, and he'll schedule an exploratory surgery in my arm (thats about the worst thing you can do to an RSD patient, open up the area, do surgery for nothing) or I'm a drug addict, and I can get up and walk out that door right now.

I got up and silently left. My next doctor showed me his report, it said I admitted I was a drug addict ( I gues by walking out) and he said not to worry, this particular doctor does this to everyone! Thats when I dediced to file a complaint, it's just not right to advertise yourself as a pain management specialist when you have no clue how to treat chronic pain properly!

If you feel you need better pain control, look for it. Don't feel like you have no choice or what 1 doctor says is the end all. If you can work with ___ medicine and can't without it, no doctor in their right mind would stop you (if you have a condition that warrants it & use them responsibly) There are actualy laws that if you're on a specific medicine that is benefiting you, no dangerous risks, and you use it responsibly, & switch doctors they cannot refuse to continue your prescription, unless they totaly refuse to treat you & refer you to someone else.

[bumpkin]

OH! I SOOOO know what you're saying. My doc, who is supposed to be a nice person by nature, now treats me as though I am an addict, because his cursory treatment of my pain, (from ruptured disks and spinal arthritis, per his dx,) didn't 'fix' my pain-problem. The other day, I got a letter, 3 sentences long, telling me, after I called the office and said I was hurting more than the meds were working, (I was having a flare-up) that if I didn't "comply with the contract" (he originally insisted I sign a pain-treatment contract in order to give me pain meds, to protect himself) he would be forced to taper me off the vicoprofen at once. I was so furious! For heaven's sake! I only take 1.5 to 1.75 vicoprofen 3-4 times a day! Its not an excessive amount for a pain patient! He received a four page letter from me, discussing his behavior as a medical professional and my expectations of him. I was a hospital RN for over 15 years here, and he knows I am aware of the patients bill of rights in our hospitals. Of course he wont read my letter, and likely I will be shopping for another doc this week, even though I have NO insurance now. Its harsh. I'm going to www.abms.org to find a specialist in my area who can diagnose and treat me correctly, and has the education for it. Don't assume a doc has been educated in all fields before they let him/ her practice on you! NOT! What's really odd, is my mother, also a nurse, but for 26 years at a local hospital, is also his chronic-pain patient, and she didn't get asked to sign a contract. We both have the same strict personal values, yet I was discriminated against. BTW, lifting humans for a living will usually wreck one's body eventually. Never do it if you don't have to.

[savagemama]

The contracts are odd. I never signed one until I started taking MS Contin. But my doctor said as long as I speak to him first about changing or upping my meds it's fine, the contract is more about me taking too much without telling him I need more, or getting the same drug from multiple doctors (of course I do neither)

However, my father also has chronic pain, in his back from 2 car accidents, as well as his leg from a dog bite, and he takes much stronnger meds than I do, and has never had to sign a contract with anyone.

I'm a bit worried right now, because Ilast week I was told to seek pain management for my mouth pain, I have seen several doctors & dentists & one finaly says they think it's RSD and I should seek pain management. I already have a pain management doctor for RSD in my arm/hand. (a work injury, so workers comp pays for my treatment)

Of course workers comp refuses to pay for my mouth treatment, and my doctor doesn't take my other insurance, I've consulted him and he said to see whoever my insurance will pay for, but I'm afraid if I start taking more painkillers it will break my contract with my current doctor, but my current doctor CAN'T see me for my mouth pain unless I pay him cash. So I have appointments with all my doctors this month to try & figure this out! I dont want to be accused of being a drug addict or getting meds from different doctors, because my insurance will not allow me to just see one doctor for everything!

I did also just get medi-care PPO, and my doctor is out of network, so I;'m going to see if it's possible if I could see him for my mouth pain, out of network with my medicare. But I'll have to pay 15% copays so I dont know if I can afford to do that either, or if I should try to seek a new, in-network doctor as well as my workers comp doctor.

Sorry if thats all confusing, Im confused myself!!

[bumpkin]

No, its not confusing to me, but I certainly feel for your dilemma! It is a huge snarl, this insurance mess, isn't it!? And the pain makes it all almost intolerable to deal with. With no insurance, and many refusals from the insurance communities, I am in the unenviable predicament of ONLY qualifying for the State Insurance- high-risk, and its spendy. Also, I can't afford it any longer. I can barely afford the pain meds I need to continue some semblance of 'normalcy'... such as it is. You understand that, I am certain. Its really weird that genuine 'feel-good' is something that money really has little influence over, but feel-bad is easily affected by the funds! To me, feeling like I did before the injury and the subsequent sick web of pain-in-pain would be the ultimate life-goal! I always said, and planned, to live to be 150. Now, I am not so sure. Pain meds don't "fix" any of this nightmare- really, it eases pain a bit, but brings an entire host of new distress. Ugh.


Good luck with your quest to have your mouth pain treated without any repercussions in the other areas!

[savagemama]

Thank You very much. I can totaly relate to what you said. My emotions & life were really ripped apart by not having enough money to live & get the treatments I need. I know I'm fortunate to have any coverage I didnt for several years s o having some help with paying is great.

But I've never been the type of person that lets money or wealth rule my life or emotions, I could care less if I was a millionaire or just living comfortably (and my idea of comfortable is probably much lower than many, I dont want much materialy out of life) but when you dont have money for things like rent food medicine, insurance, that hurts. It really made me question who I was in ways getting so freaked out over money. But not having money has some dire consequences. And I have a son whose care is always before mine.

I started getting SSDI in Feb so my back payments have made life a little easier, and the monthly check, but a lot of it will be going to medical care so we're still strggling with basic needs.

Have you applied yet? I wish you luck too in finding good doctors and managing your pain as well as possible.