I am a 33 yr old woman recently diagnosed with CRPS/RSD after 3 years of improper care, being turfed from doc to doc and being treated like a drug addict/drug seeker.
I have peripheral vascular disease in my left lower extremity and the RSD developed after frequent and chronic stasis ulcers on my left foot/ankle. My pain is unrelenting, extreme cold or heat (like we're having now) seems to exacerbate it.
I'm on Lyrica and Norco for pain but it never goes away. I have had several (very painful) nerve blocks with no relief. The biggest problem I'm having is coping emotionally with the changes to my life. I am so tired of being "sick", of going to MD appts ALLLLL the time, carting around pill bottles the size of trash cans and so so tired of hurting.

It's always there, it never goes away and I think I may go insane. I dream about dying like most people dream about winning the lottery! I would NEVER kill myself as I would never do that to my kids but I think about it all the time. I can't find any support groups for chronic pain in my area but I did make an appt with a psychologist. The thing is I don't want to be on anymore meds, I don't want to start taking benzos in addition to all the opiates I'm on but I don't know what to do to get rid of this anxiety.
I'm scared all the time, when I have bad flare-ups of pain I am miserable to everyone even my kids, and I just don't know how to go another 40+ years doing this. I don;t think I will make it. Can someone tell me how to get my head together??

Dear BaseballMama -

Welcome. You will find this is a good and supportive place. You've been through a lot. Ironically, you will find that your peripheral vascular disease is a condition that many people with RSD/CRPS develop as a side effect. (I had a venal flow ultrasound study done the other day, and the tech couldn't believe her eyes and ears when it came to how constricted the return flow was, through one of the legs in particular.)

As someone whose been dealing with this for close to ten years, two primary thoughts occur in response to your post. First, at least for me, my third year of RSD was probably the worst in terms of pain, and Lyrica and Norco don't begin to cut the mustard. You need something stronger. And with regard to your current medical treatment, it's pretty well established that blocks don't have any effect after approximately the first year, at least for CRPS-1, so if you were being given blocks 2+ years after you first became symptomatic, that was a needless and I hope not too expensive exercise.

Thought one: you still need to find a new pain doctor.

Secondly, you clearly could use professional counseling/therapy from a psychologist/psychiatrist trained to work with pain patients. Similarly, you could benefit from participating in an MBSR (Mindfulness Based Stress Reduction) class, a program developed largely for pain patients by Jon Kabat-Zinn, PhD out of the University of Mass. Med. School over 30 years ago. Since then they have trained thousands of teachers, many of them PhD psychologists around the country. Two years into this beast, I was referred to an MBSR teacher by a very good pain psychologist, and it turned my life around, or started a new one, more to the point. Here's their homepage http://www.umassmed.edu/Content.aspx?id=41252 and a linked page specifically describing the MBSR program http://www.umassmed.edu/Content.aspx?id=41254 At the bottom of the second page is a link to find MBSR teacher's in your area: if they are mental health professionals, much of their fees will be covered by health insurance.

Thought two: whether or not you go with an MBSR class, you need to find a really qualified pain physician. For that, I would suggest using the search engine of the American Board of Pain Medicine (ABPM) at http://www.association-office.com/ab...dir/search.cfm If you link from there to "About ABPM" you'll see that they are the organization that accredits all pain management fellowships in the U.S. And unlike another pain management society, all but a few highly regarded practitioners who were "grandfathered in" back in the beginning, all certified specialists must not only complete a yearlong (or more) fellowship in pain management, but pass an 8 hour written examination as well.

When using the ABPM search engine, you can specify the city or state you wish to restrict your search to, as well as the physician's "Specialty of Origin." For RSD in general - and "intermediate" or chronic cases in particular - I would avoid someone who did his or her residency in physical medicine. People seem to have the best luck with pain specialists whose initial training was in neurology, psychiatry or anesthesiology. If such a person is available within a couple of hour’s drive of where you live, I would, in particular, recommend an ABPM certified specialist with a background in psychiatry.

Truly, the first thing you need to do is to find a pain specialist who’s not put off in prescribing what you need. From that point, you can consider some other real "treatment options," low dose out-patient ketamine infusion therapy for one. And for the best place to find information on RSD/CRPS, if you haven’t been there, check out, beginning with its home page the RSDSA (an old name: the Reflex Sympathetic Dystrophy Syndrome Association) at http://www.rsds.org/index2.html

Good luck. We are always here for you to answer any questions or just offer our support, with parenting issues as one of our specialties!

Mike

Thanks for all the info! I will definitely check it out. My pain management doc is so/so. He hasn't given me any grief for writing for meds, in fact last week he wanted to add fentanyl patches to the mix but I was a little hesitant. But his bedside manner leaves a lot to be desired. I guess I feel like if this thing is going to last forever I had better pace myself so I don't become addicted or tolerant to the meds and they won't work anymore. But the unrelenting pain is breaking me down mentally and I am afraid of becoming hooked on the meds. Thank you for your kind words. I wish I could find a support group on my area but so far no luck. Will this ever go into remission? Or am I stuck like this forever....?

Dear Baseballmomma...

Your post is breaking my heart mainly because we can all relate to your feelings..They are valid and you should not feel alone nor helpless..I second what Mike offered, great Mike!! I want to say that this is so terribly devestating.. our lives are not what we will ever remember..Our normalicy is no longer... acceptance is such a large step in the process of our illness.. yes, it seems this is going to be our cross to bear but we have to try and find a place to put this illness with in our life and allow it to be something we live with and work with on a daily basis...eventually trying to form a positive from it..like filtering our new life with RSD into a new adventure.. Sounds crazy but otherwise..we will all lose our minds..Funny but the longer you have it the better you learn to work with it, having the right pain mangaement Dr. along with a counselor for you and your loved ones.. it is going to take that. Continue to read, educate yourself, work with your professionals and most importantly..lean on us here...I would be lost having not found this forum and our family here...We care about you and we will all do what it takes to help you whatever it takes....

Gentle hugz, Kathy

Baseball mama there is none here either.. I come here daily just to get through..It helps to know im not the only one going thorugh it..I mean how do we make people understand??

Baseball mama - low dose ketamine infusions have helped me a lot, I just started them in April. It took me a long time to arrange, though, and insurance coverage is really difficult to obtain. Check out old posts on the subject. If you have the right insurance, and can gain access to the treatments, ketamine can make a huge difference....

good luck to you. XOXOX Sandy

Two answers. Left to conventional treatments, the chance of remission in an adult after the first year is almost zero. That said, there are a few newer therapies out there that are looking pretty good. Hence the need for a really smart pain specialist.

First, as to the bad news, check out The Natural History of Complex Regional Pain Syndrome, Schwartzman RJ, Erwin KL, Alexander GM, Clin J Pain 2009;25:273-280 FREE FULL TEXT @ http://www.rsds.org/2/library/articl...lexanderGM.pdf

Abstract
OBJECTIVE: Complex regional pain syndrome (CRPS) is a severe chronic pain condition characterized by sensory, autonomic, motor, and dystrophic signs and symptoms. This study was undertaken to expand our current knowledge of the evolution of CRPS signs and symptoms with duration of disease. METHOD: This was a retrospective, cross-sectional analysis using data extracted from a patient questionnaire to evaluate the clinical characteristics of CRPS at different time points of disease progression. Data from the questionnaire included pain characteristics and associated symptoms. It also included autonomic, motor, and dystrophic symptoms and also initiating events, ameliorating and aggravating factors, quality of life, work status, comorbid conditions, pattern of pain spread, family history, and demographics. Comparisons were made of different parameters as they varied with disease duration. RESULTS: A total of 656 patients with CRPS of at least 1-year duration were evaluated. The average age of all participants was 37.5 years, with disease duration varying from 1 to 46 years. The majority of participants were white (96%). A total of 80.3% were females. None of the patients in this study demonstrated spontaneous remission of their symptoms. The pain in these patients was refractory showing only modest improvement with most current therapies. DISCUSSION: This study shows that although CRPS is a progressive disease, after 1 year, the majority of the signs and symptoms were well developed and although many variables worsen over the course of the illness, the majority demonstrated only moderate increases with disease duration.

PMID: 19590474 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/19590474

But as noted, there are several promising therapies. Again, and following up on what Sandy said, the one that's gotten the most press is the use of the "dissociative" general anesthetic ketamine, a powerful NDMA receptor-antagonist. Ketamine has been delivered in a number of forms: orally (to little effect), through 5-day continuous inpatient infusions, either at "subanesthestic" or coma inducing level, or through a series of out-patient infusions. Perhaps the best overview of the state of the science can be found in comparing Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study, Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M, Pain 2009 Dec 15;147(1-3):107-15. Epub 2009 Sep 23 FREE FULL TEXT @ http://www.rsds.org/2/library/articl...n_Pain2009.pdf, with a commentary published in response, Intravenous ketamine for CRPS: Making too much of too little? Bell RF, Moore RA, Pain 2010 March 25 FREE FULL TEXT @ http://www.rsds.org/2/library/articl...amine_2010.pdf

The abstract to the article by Schwartzman et al is as follows:

Abstract
Complex regional pain syndrome (CRPS) is a severe chronic pain condition that most often develops following trauma. The pathophysiology of CRPS is not known but both clinical and experimental evidence demonstrate the important of the NMDA receptor and glial activation in its induction and maintenance. Ketamine is the most potent clinically available safe NMDA antagonist that has a well established role in the treatment of acute and chronic pain. This randomized double-blind placebo controlled trial was designed to evaluate the effectiveness of intravenous ketamine in the treatment of CRPS. Before treatment, after informed consent was obtained, each subject was randomized into a ketamine or a placebo infusion group. Study subjects were evaluated for at least 2 weeks prior to treatment and for 3 months following treatment. All subjects were infused intravenously with normal saline with or without ketamine for 4h (25ml/h) daily for 10 days. The maximum ketamine infusion rate was 0.35mg/kg/h, not to exceed 25mg/h over a 4h period. Subjects in both the ketamine and placebo groups were administered clonidine and versed. This study showed that intravenous ketamine administered in an outpatient setting resulted in statistically significant (p<0.05) reductions in many pain parameters. It also showed that subjects in our placebo group demonstrated no treatment effect in any parameter. The results of this study warrant a larger randomized placebo controlled trial using higher doses of ketamine and a longer follow-up period.

PMID: 19783371 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/19783371

And while there is no abstract to the rebuttal commentary, it's only a couple of pages long and reads well enough, basically taking the position that the studies in support of ketamine are inconclusive due to small sample size or other methodological impediments. In balancing the two points of view, it bears noting that (1) because CRPS is still something of an "orphan illness" there is little if any NIH money available for larger studies and where ketamine itself has been generic for many years, there is no pharmaceutical company with an interest in bankrolling it either, and (2) the authors of the commentary are from the U.K., where the technique is absolutely disfavored by the NHS. As for the experience in this country, there are many people on this forum who swear by it and in fact major health insurance companies are beginning to pay for it.

For what it's worth, I was originally signed up to be in two of Dr. Schwartzman's ketamine trials in 2004, a sub-anesthetic 5-day infusion program in Philadelphia, which was suspended 3 weeks before I was supposed to go there, for further negotiations with the hospital's IRB (the Institutional Review Board which oversees human studies), and when that came to a temporary halt, I suddenly found myself with tickets in hand, ready to go to Germany for the coma trial, when, 9 days before I was set to leave, I was waived off by the German doctors due to pre-existing (and pre-disclosed) glaucoma, a per se disqualifying condition for the coma treatment, as well as any clinical trial. (As I understand it, even at a low dose, I would have to have my pressures monitored by an opthamology resident every 4 hours.)

There are other treatments of promise, particularly in the early stage of the disease, in which sympathetic blocks are administered, but - along with the local anesthetic - Botox or Remicaide (Infliximab) are administered as well. See, Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1, Bernateck M, Rolke R, Birklein F, Treede RD, Fink M, Karst M, Int Anesth Res Soc 2007;105(4):1148-1151 FREE FULL TEXT @ http://www.rsds.org/2/library/articl...teck_Rolke.pdf and, Sympathetic block with botulinum toxin to treat complex regional pain syndrome, Carroll I, Clark JD, Mackey S, Ann Neurol. 2009 Mar;65(3):348-51 FREE FULL TEXT @ http://www.ncbi.nlm.nih.gov/pmc/arti...ihms140157.pdf

There is however one therapy, but not a cure, that has made a huge difference for a lot of people including myself, which consists of periodic infusions of so-called "biphosphonates," first developed to prevent the uptake of bone into the blood of multiple myeloma patients. See, e.g., Treatment of complex regional pain syndrome: a review of the evidence [Traitement du syndrome de douleur re´gionale complexe: une revue des donne´es probantes], Tran DQH, Duong S, Bertini P, Finlayson RJ, Can J Anesth. 2010;57:149-166 at 151-156 FREE FULL TEXT @ http://www.rsds.org/2/library/articl..._Finlayson.pdf The drug I use, Zometa (zoledronic acid) has the advantage over older forms in that it can be infused in only 15 minutes, as opposed to 4 hours; however, serious complications can result if taken by people needing significant dental work, e.g., root canals, or with any pre-existing loss of renal (kidney) function.

Other promising therapies, stopping however well short of cures, can be found on the RSDSA Research and Clinical Articles page under the heading Treatments http://www.rsds.org/2/library/articl...html#Treatment and include intravenous magnesium as well as i.v. immunoglobulin (IVIG).

Finally, there remains my personal favorite among potential cures, electroconvulsive therapy (ECT) using only the newer and significantly safer version, "'right' or 'non-dominant' unilateral" ECT (RUL ECT), as opposed to the traditional "bilateral" approach where electrodes were placed on both temples: BL ECT. See, Treatment of CRPS with ECT,Wolanin MW, Gulevski V, Schwartzman R, Pain Phys. 2007;10:573-578 (noting complete remission 4 years after a woman with chronic CRPS-1 received 12 treatments of BL ECT for RSD related depression) FREE FULL TEXT @ http://www.rsds.org/2/library/articl...chwartzman.pdf and, Right Unilateral Electroconvulsive Therapy Treatment for CRPS, Michaels F Jr., Pract Pain Manage. 2008 March;68-75 (noting misreading in 1994 article by King & Nuss on efficacy of RUL ECT for chronic pain in earlier studies and citing a number of successful case studies involving CRPS) FREE FULL TEXT @ http://www.rsds.org/2/library/articl...haels_CRPS.pdf

Sadly, my pain management doctor was in the process of making arrangements for me to receive 12 applications of RUL ECT on an in-patient basis at his hospital, using not only a high voltage delivered in ultra-short bursts, but with ketamine as a general anesthetic, when we learned that in 1976, in response to the release the year earlier of One Flew Over the Cuckoo's Nest, the voters of California - in their infinite wisdom - outlawed the use of ECT for all but certain defined psychiatric conditions (and only then if approved by multiple doctors as the patient's last best chance) outside of an IRB approved study; and with no hope of securing the funds for such a study, at was game over. So it goes.

I hope some of this is useful.

Mike

Hi Baseball Mama, I am so glad that you found all the wonderful people here who are going through this same journey. It is a journey, and as with all trips it can be a good one or a bad one and that depends on you. Mike does such wonderful research for all of us and he is usually hitting the nail right on the head. Mama, your life is going to change with the advent of this disease and that is one of the hardest things to accept, I have certainly struggled with it myself. I do take huge amounts of pain meds and know that I am addicted. However that is something that I have to do to make it through the day with a livable amount of pain. I do not feel guilty about this, I think about it in terms of treatment, if I were a diabetic the addiction would be insulin, asthma- an inhaler, or high blood pressure- meds to control this. Meds right now are about the only day to day treatment that I can do myself.

It is normal to be anxious about where this adventure is taking you and what the future may bring. One of my biggest comforts is my faith, God must surely have a plan for me that includes RSD. When I accepted that, I was able to look around and find different options for my life other than what I had planned. I have learned to love deeper, care for others more tenderly and appreciate what I have around me and those people who enter my life everyday. I have had to give up a job that I loved, but found myself directed to go another route, and at 49 am now a senior in college. I would encourage you to look for the small things everyday that make you happy, the things that are now an opportunity that you may have missed before, and to be open and receptive to the good things that happen to you everyday.

The doctors' appts. may slow down once you find a good pain doc and a psychologist you can work with. This search is hard but it is so important to have good doctors that you can establish a positive relationship with. Peace be with you and know that you are not alone. Most importantly, you are entitled to how you feel emotionally. I am glad you found this support group and I hope that they help you as much as they have helped me, Lisa

Hi I am sorry about your struggles and can relate in so many ways. Through the past 3 years I have went through many emotions. A few things that I work on daily is to stay in the day. Now this is much easier said then done but for me the future worries of what can happen make things harder so I try to focus on each day getting through in the best way. Though in no way did it take away my physical pain going back to the psychiatrist last year was a very good thing for me. For the first 2 years of this I did not and mentally I was not coping well and also becoming irrational so to speak from fear and pain. I am depressed and anxious still but am at a better point but I also stay more rational and clearer. I am not saying this is something you face but my experience.I also agree with a good pain doc who deals with RSD a lot. Can you go for another opinion? I wish I had more answers for you because I know how this pain and I too have 24/7 pain is trapping in so many ways. I am not a religious person but I do believe in hope and so I try to focus on that and possibly the right treatment getting me and others to a better place. Don't get me wrong I have my crying break downs but I think that can be healthy to get the emotions out. If you want an email buddy I am here.

Wee-dooggies..what an awesome family we have here...Words rom the heart!!!

Love to you all...Kathy