Rsd/crps can't cope
 

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??

hi there
 

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! :grouphug:

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:grouphug:

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:grouphug::grouphug:

I hope I can help a little
 

Dear "You're not alone"

Because my RSD started in exactly the same place yours did, I wanted to share my two cents worth of valueless experience because I do understand in part what you're going through.

My original accident was crushing of nerves in 3 locations in the groin and left leg that made my RSD staring point in exactly the same location as yours. Now since I don't know what your original accident or cause was that got the RSD started I'm a bit in the dark in this area, but I do know and understand the frustration of your situation.

First, while it's not your fault that you've gone to quite a few doctors seeking relief for the endless pain that's driving you halfway out of your mind, please don't be mad at doctors for asking why you keep knocking on more and more doors. While I and others at this site understand the desperation you're experiencing, the fact that you haven't found a reasonable solution for easing your pain is causing you even more.

This world is filled with drug addicts and people seeking easy ways of making very good money through the sale of narcotics. My narcotics have a street value of over 10 grand a month so it only makes common sense that any respectable doctor is going to ask the question about your motives. Not because of what you've done, but because of what so many others are.

What you need now more than anything else is an ironclad diagnosis and documentation that clearly explains the nature of your original injury and the current reasons for why you're not getting better. Be this through nerve conduction tests, bone scans and the list goes on and on. RSD cannot found by the results from a single test, but instead it's usually figured out by a combination of results that all lead the same direction. Be it swelling, glossy or bumpy texture to the skin, extreme temperature changes in your limb (mine is often up to 5 degrees hotter or colder), discoloration, and in some situations a limb that's contorted in some weird position. Pain alone is never a sole means of diagnosis. If you have some primary (the original) injury that's also giving some form of symptomatology then that also helps considerably. Without these tests and physical manifestations of the affected area, pain alone is rarely enough for a doctor to feel comfortable with handing out the hard hitting pain killers.

While good common sense tells you that if a doctor isn't providing the answers to your health problems and better yet assisting you with the rather extensive list of problems that go along with RSD (we're not just talking about pain pills here, we're talking about additional treatment and care), then fire him and move on. Thing is, this also can backfire to the point where you're going to have an even harder time finding a doctor who'll listen and study your case carefully.

Find one or two doctors (I have one for the infections and blood clots, another for pain and another specialist who decides things like when we'll do our next amputation and who keeps all my documentation in order) that you totally trust and then stick with them. Then allow the doctor to learn slowly that he can trust you and that you're not just another junkie looking for a fix or who wants a better standard of living. This takes time and lots of it because like all deeply involved relationships, they're not built overnight.

As your small team of trustworthy doctors really gets to know you and as they document each step they and you are following along the way, your care will slowly improve in all aspects.

Regarding your inner desire that you don't necessarily wake up tomorrow morning, we're all been there and we understand why. You will eventually get to a point where you'll accept the changes that are taking place and those feelings will subside at least in part, but there's nothing wrong with feeling that way, it's normal. With the kind of pain you're right now being forced to deal with that is probably seriously deficit in adequate pain management, these emotions go hand in hand. Only after your pain levels are being a bit better managed will they probably subside.

Seek out people like the wonderful group here that can hopefully answer some of the hard questions about treatment, medications and ways of coping day to day, but also seek out professional help as well. As long as you maintain a highly respectful attitude when dealing with doctors who have 11 plus years of higher education under their belts hence they deserve the respect because they've earned it, and as long as you accept the sad fact that you'll never possibly be pain free or live like you use to, you'll do a whole lot better overall.

I'm always here to help if you need it. Best of luck, Bob.

The odds are for not against you
 

Good morning,

The odds regarding RSD is that 90% never go any further then the stage you're at right now, and those who only have RSD in phase I will find they experience what most doctors call the 2 year burn out. Only 10% ever see RSD go into phase II. Then of those who go into phase II only 10% of those unlucky people will ever see phase III so if I was a betting man, I'd say you've still got a very good life ahead of you and the odds are in your favor.

Regarding your hesitation about medications. These are prejudices we all have in the early stages, but please listen and do what you're told because if you don't, then why go in the first place? While we're all guilty of playing doctor a little since "we" always know what's right, but the truth is we haven't gone through the years of draining education these people of medicine have so we really have no other choice than to do what we're told.

The care and the steps you take right now are the most important steps you'll ever take no matter what it is. Do the patches. They'll ease up the pain at this stage which in all likelihood which will make you more comfortable ad will keep you moving which is darn important. While the doctor might lack in bedside manner, so long as he's worthy of your trust, then follow his orders be it therapy, medication or standing on your head pointed toward the north during all solar eclipse, do it. Trust me, while you might not see the turnaround results you're wanting today or tomorrow, down the road you will. RSD is all about time so just stay patient - patient, and let the RSD run its course under the care of someone who knows what he's talking about.

You might have a year or two ahead that won't include the lifestyle you use to enjoy, but trust me - the odds are that before you know it, you'll be looking back on this whole ride as being just another glitch in life that you handled well so you could make a better tomorrow for yourself and those you love. Best of luck, Bob.

Dear Bob...

Interested..where did you get your information and stats from? Are you a physician or have close ties to one..I like the stats..unfortunately...I along with many others on the board did not fare so well in the %'s catagory of the non-spread..

Good day, Kathy

BaseballMama,

I am so sorry for your pain! I feel like you on many days. Right now I am sure you just want someone to say, it's going to be ok, you will make it and give you a hug even though you probably won't believe them. Usually when someone in my family says "I understand" I want to scream, there is no way you do or can and want to rant about what I am going through. I can't tell you that it will get better, for me it hasn't YET. I can only hope that you will wake up tomorrow having your "good day" and cherish every minute of it and remember that you can come here and someone will listen :hug:

Dear baseball mama,
I am sorry for you pain and the terribly emotional impact that it causes..the mentally exhausting, and fearful state it causes..
I don't know if this will be helpful to you or not, but when I have the daunting, frightening thought that this can get even worse, and last for the rest of my life, i try to break it down a day at a time..the concept is simple and might sound trite, but I have found it really is so helpful to get in a mindset that is moment by moment..otherwise all of this is overwhelming..
I have found some books and C.D.'s that help with this..I know it seems so insignificant to even think of this while you are in horrendous pain, but it can help..I hope the appointment you have made with the psychologist goes well for you..and that s/he is knowledgable about pain psychology and approaches like Mindfully Based Stress Reduction..(Jon-kabat Zinn)
Sending you hugs,
Hope4thebest

A very close relationship
 

:rolleyes:Good morning Kathy,

I've been with a specialists who did his residency (and was offered a permanent position but turned it down to my amazement) at Mayo's for 11 years now and yes we've grown rather close over the years. Since this wonderful guy has never once turned me down the wrong path, I've just learned to trust his counsel and his brilliant mind. With a career that makes almost any doctor envious, this most humble of man never overreacts, but instead just works the problem.

One other point that's commonly discussed during my 30 - 45 minute appointments is that usually there's another contributing factor(s) that go hand in hand and can't be either fixed or fully repaired when a patient finds themselves further along the RSD phases. We also talk about the importance of maintaining as decent of mental outlook as possible even when you do think you're going half nuts. The recuperative effects of keeping a positive attitude are well documented but still not fully understood.

The hardest part during phase I and II is when to proceed with this treatment or when to back away because no two patients or situations are alike hence the very reason why some patients do so much better than others even though they both had for example sympathetic nerve blocks.

Another way of determining which stage you're at is by looking at the additional complications other than just pain such as severely decreased circulation, infections, blood clots and morphed appendage. It's these additional complications that eventually become just as severe and in some situations even life threatening that sort of push a person into the final aspects of phase II or into full blown phase III where you're just along for the ride, but there's just not a whole lot more you can do about it other than damage control while the doctors try to save your bacon.

One other thing. I guess you might say I've been exposed just enough to what RSD is that I've picked up a couple things along the way, but trust me, I am always the first person to embrace my own inadequacies about everything because the more I learn the less I really know after all. Gee, it does keep it interesting doesn't it? Do take care, Bob.

WOW! Thank you all so much for your words of encouragement and support and for all the information. I'm happy to see that I'm in the right place :). Lisa in Ohio the way you described being "addicted" to insulin and inhalers was like a lightbulb going off for me. I had never thought of it in that terms. As a registered critical care nurse who has worked in the ER and a public health clinic I have seen more than my fair share of drug seekers and people who are addicted to rx medication and have to admit that I have certain stigmas I attach to narcotic use. That is one of the things I am struggling with, as well as not adjusting well to going from being the nurse to being the patient and I'm finding myself very angry at times. Angry that I can't work and can't just get up go when I want to and that I can't run and play with my kids like I used to but I think mostly angry that I told my vascular surgeon, wound care doctor and primary care doc about my symptoms for sooooo long and begged for help and they just kept turfing me back to each other. I'm angry that had I been diagnosed in a timely manner I might have had much better results from my nerve blocks and might have a much better quality of life right now!! BobinJeffmo to answer your question, unfortunately I have had several integumetary changes to my leg/foot including thinning skin, hyperpigmentation, altered blood flow, decreased hair and nail growth and the ankle joint has also started to show signs of osteoporosis. And this has been progressive over the last 28 months so I think unfortunately I am one of the the unlucky ones whose illness will indeed progress. And with being a medical professional (in my "past life" anyway. I haven't been able to work since April of last year) I'm well aware of the complications that can arise, particularly for someone with my coexisting illnesses. But I know that those will be things that I have to come to terms with and I am happy to say that I did have my first appt with a psychiatrist who specializes in chronic pain patients on Tuesday. Just hearing someone validate my feelings and tell me I'm not actually going insane was very comforting. I did agree to a short term course of treatment with Xanax for the extreme anxiety days and Buspar on a daily basis and that seems to be making a tremendous difference. He also pointed out that (unbeknownst to me) I was actually on a very small amount of medication for someone with this condition, so at my neuro appt I agreed to a stronger dose of the Norco and that seems to be making a big difference as well. At the very least I don't have to take as many pills as often. But as comforting as all that is you guys have given me so much hope so thank you thank you thank you!!! Gatorsmama you hit the nail on the head. As much as my family is supportive and wonderful to me, they just don't understand. If I'm quiet and tense or short with someone, it's not that I'm mad at them or angry about anything, it just hurts to be me at the particular time and I need space. My poor husband especially feels like I'm shutting him out at times but I don't mean to. I just hurt! To know that there are others who struggle with the same feelings and obsticles is immeasurably comforting. So thank you and God bless each one of you! I look forward to reading more of the message boards and leting my newly found light at the end of the tunnel guide me through this dark time! Thank you friends!!

Dear baseballmomma and Bob...

I just want to thank you for for your posts...Very nice, informative and kind...It is so nice to be in the same corner with you and all of our family here... Bless you all and take good care...Hugz, Kathy:grouphug:

Hi Mama, I am so glad to hear that you have gotten angry!!- it is certainly better than despair, and when we get angry, we get active, which helps in the long run. ( Wow, what a disjointed sentence!) I am also so glad to hear that you are seeking and finding some good, qualified help. Never, never let anyone tell you that you are not entitled to your feelings mental and physical, they are yours and for that moment they are right. So glad that you are doing better and have found this group of special angels to walk through this journey with you. Peace my new friend, Lisa

Hi Bob, Interesting stats- After 15 years of this, I would be thrilled for them to be true. Can you share where you got this information from. I started out with one frozen shoulder following surgery to now full body plus internal involvment. Thank you ahead of time, loretta

Here's where I get my info from
 

Don't ask me how I got so lucky, but two of my doctor's who take care of me are Mayo's trained and so brilliant they almost scare me. It's my RSD/Sports Medicine doctor (was was offered a permanent position but then turned it down!)who's the head and ultimately in charge of all the big decisions of my team who explained to me so much about RSD during our 30 - 45 plus minute talks each and every time we're together over the past 11 years.

Since you're 15 years into this RSD saga, you're not in the typical boat boat most are in, but of course you know that. What hurts me is when I read postings by people who've just been diagnosed with RSD but then think their lives are over when that's just not necessarily the case. While there's never a situation where "always" is the rule, those of us who've been around have seen a great deal of RSD cases get further along not just because of one problem, injury or disease that's going on but other contributing factors hence the RSD is just one piece of the puzzle, but rarely the sole reason for all of their health problems. My only goal was to give some hope instead of just more of the "sky is falling" scenario which is so easily found all over the Internet these days.

The more we can help guide those new into RSD toward finding a doctor(s) who really know their stuff from day one and then convince them to stick it out instead of constantly shopping around with more and more physicians because they're not getting the results "they" want, when "they" want it, the more help we can be. Unfortunately pain sometimes drives us all down the path of doing the stupid and not following through with whatever course of treatment or action they're being advised to take simply because results are not taking place fast enough. For those of us not blessed enough to be born with patience, in the end we'll find it because we have no other choice.

It's been a delight visiting with you, Bob.

Hang on a moment, you're in the right place I promise
 

If you'll take a look at the photo's I almost didn't decide to share, you'll see that I understand how horrible it is living with peripheral vascular disease because it sounds like we both found the same boat that was mounted on the Titanic.

I'm not really surprised that RSD became one more issue when you've got the incessant circulation problems that usually include infections and even blood clots to name a few. I know and so does everyone else here that you're not some nut who's looking for your next round of drugs and that you're not suffering from a love of spending days at a time in doctor's offices reading dog-eared magazines showing the latest hippie movement as news breaking on the front cover. You're just trying to find solutions.

Vascular diseases are one those really hard nuts to crack illnesses because it's not always just about treatment, but how in the world we live with it that drives us half insane at times. You've spent days, weeks and months I'm betting with physical therapy. Medications seem to only help a bit, but nothing so far has really eradicated these invasive diseases from taking over your life. So now what?

First, stop beating yourself up! It's not your fault so stop shopping for more. It is something that you might just have to learn to live with no matter what stage your at or if worse it progresses, but trust me - you can live with it. One way is by not competing with yesterday and every time you start comparing what you use to call normal compared to what you're living with now, you're only headed down a very dark emotional hallway that leads nowhere. Instead learn to live with what you still have plain and simple, even though there's nothing simple about it whatsoever.

Right now I'm betting that as much as you hate carrying around a purse full of medications, you're going to need to accept that you probably always will. You need better pain management. This first requires you release any prejudices you have against the hard stuff and instead look at harder hitting prescriptions such as narcotics in a bit different light. It wasn't till I started my regimen of OxyContin and OxyIR (plus internal morphine pump) that I was able to find a new normal in life. Before my accident, I wouldn't take an aspirin over a headache because of such adversity against anything in pill form. Once you get your pain under better control you'll then find the means and ways to find solutions you would have never considered in a million years before now.

Secondly, please try and do anything you need to so you don't accidentally strike out against those who love you. While we all have the tendency to hurt those we're the most close too, it only causes more grief in the end. When you're finding yourself bouncing off the walls emotionally, do it alone or get in touch with the gang here, but avoid it in your real world as much as humanly possible. Bridges are easy to burn down but takes years to rebuild so if the doctor advises you to take some form of chill pill - do it. You're at an intersection in life where you've got to trust your doctors and then accept that these most intimate of relationships also take time to forge. Only through time will you hopefully and slowly find yourself in better shape than you are today.

Not is all is lost, it's just different and I'm positive that you will learn how to live this different life that's ahead. I'm here if you need to talk, Bob.

Hey Bob... Your posts are enjoyable..may I call you " I call it as I see it, Bob"?? You are a good guy!!

Kathy:grouphug: