Saturday, December 31, 2011

New Year's Resolutions

My New Year's Resolution for 2011 was to have a more positive attitude and to make 2011 a better year than 2010.  I think that I accomplished that.  It is probably the first New Year's Resolution that I've every kept because it was attainable. 

Part of what happened in 2010 was out of my control; a wound infection following a spinal cord stimulator surgery that resulted in months of wound care but my attitude and and mood were within my control.  I made a consciencous decision December 31st 2010 that I was going to have a more positive attitude this year and over all I think that I did. Of course I am human and had my ups and downs; but over all I tried to make some positive changes in my life.

There are some things that I can not change in my life.  I can not change the fact that I have RSD.  I can not change the fact that my husband travels 4 - 5 days a week for work and that I am alone during that time period.  I can not change the fact that my family live either in CA, DC or the Philadelphia area.  I can not change the fact that even after 5 1/2 years of trying, I have been unable to meet people here in Orlando to socialize with.  What I could change is being able to volunteer.  I began the process of becoming a Guardian ad Litem (although it is taking longer than I though the process is still moving forward).  I joined the Ketamine Klub for CRPS/RSD Patients on Facebook and asked to be an administrator.  I have met some terriffic people with whom I have so much in common.  It has given me a huge boost to be able to share my professional skills in health care to help people try to get insurance approval for treatments that they deserve. 

I have wanted to do physical therapy to improve my balance for over ten years, but every time I do PT at a facility by the time I drive there, my foot is so stressed out that I can't really do my best at the therapy.  I was finally able to get a physician to order home PT and got a wonderful physical therapist who actually understood RSD.  She didn't push me when I had pain.  We worked on my core muscles and worked soley on balance to prevent falls (as prior I was falling at least once a month).  She gave me easy exercises to continue at home after our 6 weeks together.  Since my discharge in February, I have only fallen twice which is a huge improvement.  Once was while getting dressed and the other time was when someone left a glass door open on a stereo cabinet.  I didn't see that it was open and crashed into it.  Neither time was while walking which was how I was falling before the PT.  I consider this a huge improvement!

I had a long time friend whose exwife and I became friends when they first started dating because we felt it was the right thing to do.  Even after they broke up, I maintained the friendship as she had primary custody of their daughter who I was close to.  This friendship was very draining emotionally on me.  She is one of these people who is your friend when she needs something from you and you never hear from her again until she needs something from you again.  When you don't have that many friend (because all of your friends have abandoned you due to your RSD) you tend to over look the faults of the friends that you have and hold onto friendships even if they are toxic to you.  Well this summer I took a big step for my mental health which in turn is a big step for my physical health since with RSD your emotions directly affect your pain level.  I told this friend that I could no longer be her friend under these circumstances.  I told her that I felt that the friendship was one sided and given the physical distance (she lives in upstate NY) and the fact that we would most likely not be able to see each other that it was best that we end the friendship.  Since I made this break in June, my life has been much less stressful.  This family has many issues and unfortunately our long time friend did take it personally that I decided that I could not be friends with this exwife, even though he had decided nearly ten years ago that he couldn't be married to her any more, but I know that it was the best thing that I could do for my health.  You can only give so much and get hurt in return for so long and stay healthy.

I have tried to look at the positive things that RSD has brought to my life rather than dwelling on the negative all of the time.  I think that I am a more compassionate person than I was.  I am more tolerant of others faults now than I was before.  I value postive relationships more now since they are more difficult to come by and harder to keep.  I know that life can change in an instant so I treasure the good times that I have rather than dwell on the bad days.  When I am having a bad day, I try to treat myself to a new video or something I can do while resting. (I get them ahead of time and put them away for a bad day just like people put things away for a rainy day).  I record things on my DVR for a bad day as well.  I snuggle with Nemo and we try to make the best of it.  And yes, sometimes I get on Facebook and complain to my RSD friends, which makes me feel better too because they all know where I'm coming from.  I try not to do that too often.

This last week of December has presented me with a dilemia that I'm not sure how to handle but I'm not going to let it get me down.  I have moderate to severe Carpal Tunnel Syndrome in my right wrist with some muscle wasting and moderate Carpal Tunnel Syndrome in my left wrist.  If I do nothing with the right, eventually I will continue to have muscle wasting until I lose function.  Since my RSD is primarily in my lower body, I depend on my upper body to compensate.  I have also always done crafts that involve fine motor skills in my hands to occupy me and fight off bordom.  I have been having nore and more difficulty doing these tasks.  Even cooking and photography have become more difficult.  My RSD neurologist locally, Dr Hashmi, told me that people with RSD have a 50/50 sucess rate with the Carpal Tunnel Release (I really hadn't planned on having surgery until he told me that I was losing muscle and would lose hand function).  That means that 50% get RSD in that hand after the surgery.  That would mean not only loosing function in that hand but more pain that I already have in that wrist.  Since I will be going to Philly in a month to have Ketamine with Dr. Schwartzman, I will discuss it with him to see if it would better my odds if I had the surgery while having inpatient Ketamine at the same time as having the surgery.  I will get his opinion on the surgery in general as I remember that he has a strong opinion on CTS.  I just don't remember what the opinion is.  I am trying not to let this get me down, to keep a positive attitude about this.  It is a bit difficult to process because it is still new and it is yet another thing being taken away but I will find a way to process it.  I refuse to allow this disease to beat me.

So now to think of a New Year's Resolution for 2012 that I can actually keep....I think that it has to be the same one as 2011.  I will have a positive attitude because I feel that attitude is everything!!

Tuesday, December 27, 2011

Holidays and RSD don't mix!

Holidays and RSD

            Although my children are grown now; I have had RSD for more than half of their lives.  There is a lot of guilt that goes along with having young children when you are a mom with RSD.  You try your best to push yourself to your limits to do your best to give them as “normal” of a childhood as you can.

            This of course carries over to the holidays.  Even when your children are grown, you want to continue the traditions that they grew up with during the holidays.  Now that my youngest daughter is married; we split the holidays.  They go to my son in laws family for Thanksgiving one year and Christmas to us.  The following year it is reversed.  This was our year for Christmas.  I did as much preparation in advance as possible but there is always cooking that has to be done on the holiday.  To top it off, I have bronchitis and have been sick for four weeks so I was run down.

            We went out to dinner on the 22nd when my mom arrived.  On the 23rd, I took my mom, step father, daughter, and son in law to EPCOT’s Candlelight Processional.  This has been a tradition with my mom, step father and daughter but it was the first time for my son in law.  My mom had a cancerous growth removed from her leg and was unable to do long distance walking, so that she wouldn’t miss out, she used my wheelchair.  This meant that I walked throughout EPCOT.  I never walk in the amusement parks and have not done so for the past 15 years.  My daughter is blind and needs someone to guide her.  It is too crowded during Christmastime to take her guide dog (besides it was 85 degrees and her dog is black and not used to this heat).  My son in law Bennett pushed the wheelchair while I guided my daughter Kim (my step father has COPD).  So I started out the weekend by stressing out my foot with all of the walking.

            The candlelight processional was beautiful as always and everyone enjoyed it along with the Japanese dinner that we had before hand.  Kim wanted a Mickey Mouse ice cream afterwards just like when she was a kid.  We had a great evening.  When we got home I went straight to bed to elevate my foot.

            Christmas Eve I made crockpot chili for lunch which could be prepared early in the morning (which is my best time of day) and a cold shrimp dish for dinner that also had to be prepared in the morning and marinade all day.  What surprised me was that all of them required a lot of chopping which had never been an issue for me.  We have high bar stools in the kitchen so that I don’t have to stand when chopping but the repetitive motion of the chopping really aggravated my newly diagnosed carpal tunnel syndrome and my hand swelled up like a balloon.  I had to stop frequently to rest my hand.  Unfortunately I am definitely right handed so I could not switch off.  This was pretty devastating to me as for the past 15 years I have relied heavily on my upper body to compensate for the RSD in my lower body and the weakness that the multiple fractures in my right foot have caused.  Until now the full body RSD has only caused burning pain, GI issues, migraines, a neurogenic bladder, and neck issues but I always had good function of my hands.  I did crafts to pass the time and relied on my upper body strength to compensate for balance issues and lack of strength in my lower body.  Now things have changed.

            By the end of the day Christmas Eve my right foot and right hand were both quite swollen and shiny.  It goes without saying that my pain levels were quite high but everyone enjoyed their meals, the baked goods and were enjoying Kim’s favorite Christmas Eve tradition; the watching of “White Christmas”.  Bennett wanted to watch the original “Miracle on 34th Street” as he had never seen it.  After that, I headed off to bed but could not sleep.  Rather than keep my husband up, I went to my den and laid on my sofa and laid on the sofa and watched videos until everyone got up Christmas morning.

            Christmas Day was wonderful.  I made Pumpkin Cinnamon Buns (I had made them previously and froze them so I just had to pop them into the oven and bake them) for breakfast.  We opened gifts; all of which were wonderful.  I made all of Kim’s favorite traditional Christmas lunch dishes.  It was warm enough to eat outside on the patio.  I spent the afternoon in the kitchen cooking (on my feet of course) the dinner that I made every year when Kim was growing up (by the way Kim does have a sister who lives in CA but she couldn’t come home and she isn’t the one who is the traditionalist; Kim is).  As I was cooking, we all decided that this would be the last year that we would have the holidays here.  Next year, when it will be our year for Thanksgiving, we will travel up north and Kim and Bennett will cook the meal.  Although it saddens me that I will no longer be the one making the meals; I know that my body can’t do this again.  By the end of the meal my foot looked like a shinny balloon.  My son in law (who loves to cook) did all of the peeling and chopping for me for Christmas dinner (normally I don’t let anyone help in the kitchen but I knew that I couldn’t do it).  Right after dinner, my husband cleared the table and did the dishes while I went to bed to put my foot up.  Although I didn’t fall asleep because I was in too much pain; I needed to be in a dark room alone for a while. I have a hospital type adjustable bed so that I can elevate the foot of the bed to help with swelling.

            Now I know better than this after 15 years.  I know how to pace myself.  I know that if I am on my feet and do all of this cooking that this will happen and I will end up in this type of shape.  When we lived in the house that the kids grew up in in Pennsylvania where everyone knows where things are, the kitchen was large, etc. I was more comfortable having people helping.  When my mother in law was alive (she lived with us) I was more comfortable with her helping in the kitchen because when I wasn’t feeling well, she did some of the cooking (except for holidays) but because my mom has vision problems and is not steady on her feet, my husband can’t cook (but does all of the clean up in the kitchen), and my daughter is blind and hates to cook; I feel like I should be the one to prepare the holiday meal because I have always done so.

            It’s funny because we know better.  I know better.  Sometimes we push ourselves beyond our capabilities for whatever reason and we pay for it afterwards.  The holidays, at least for me, are one of those reasons.  I guess this is the last year as next year the younger generation is taking over.  I know that it will be very difficult for me to sit by and keep my mouth shut as they do things their way.  I know that my mom and mother in law DID NOT            sit there quietly and keep their mouths shut when I cooked my first holiday meal….but then again; I have done a lot of things differently with my girls than they did with us.  Unless asked, I will keep my mouth shut and let them start their own traditions.

            I know that my body is ready for this change over and has been ready for this change over for many years due to the RSD.  If it weren’t for the RSD I would be too young to pass on the torch; but there have been a lot of things that have happened to me too soon because of RSD.  Just as it was an adjustment when my “baby girl” got married, it will be an adjustment when they take over the holiday preparation.  I know that I will enjoy it more when I am in less pain than I am in today.  I will be a more pleasant person when I am in less pain.  I will be able to spend more time with them when I am in less pain.

            We don’t always learn from experience when it comes to RSD, do we?

Tuesday, December 20, 2011

Dealing with family

No matter how hard they may try, it is difficult for family to really understand what the RSDer is going through.  I truly feel that unless you have chronic pain yourself, you can not totally understand what it is like no matter how much you want to.  Many family members grow weary of dealing with it, just as we do; but we can't walk away from it.

An example is; We have so many losses.  We may be watching a holiday ice skating show and say; "oh how I miss ice skating".  You've probably said that a thousand times and your family is sick of hearing you say that, but not as much as you miss doing it.  Someone who is a nurse is talking about a patient and you say; "oh how I miss nursing".  Again, you are saying this for the thousandth time.  Your spouse says, why do you dwell on these things because it only depresses you?  You see around you mothers playing with their children; something you used to do before your accident.  You see someone jogging; something you used to do before your accident.  These things surround you; how can you not think about them?  They surround you.  Family members think that you can put your RSD out of your mind.  How can you when the pain is always with you 24/7 as a reminder.  How can you forget about what you have lost when those reminders are with you 24/7?  Do they realize this?

We try to make the best of our new lives and make a new normal for ourselves.  This means changes in our family relationships.  Some family members can accept these changes in our relationships and others can not.  Those of us who are able to cope with the changes accept that these changes are out of our hands and let go of the relationships that can not survive these changes and cling to those that do survive the changes.  Marital relationships have to change.  When touch is painful, the way a couple expresses their love for each other has to change.  When a partner can no long pull his/her own weight around the house, earning wages, etc the partnership has to change.  When a parent can no longer do the same things with their child, the parent/child relationship has to change.  When a sibling can no longer have an equal relationship as far as entertaining during the holidays, providing care for an elderly parent, but loves their sibling just as much as they always have; change has to take place.  The question is, can the other person accept the changes that have taken place in the RSDer, accept the RSDer for who they now are and support them emotionally.

In my life I have accepted that my husband has accepted certain aspects of my RSD; he has accepted my physical limitations, but doesn't do well with the emotional toll that it has taken on me.  He leaves that to a therapist.  He is more than willing to take over household chores that I can not do and in no way makes me feel badly that I can no longer work.  He works his butt of to support me economically and emotionally to the best of his ability.

My mom for whatever reason can't accept completely this disease.  Intellectually she understands that I am in pain, but she can't alter her life for mine.  It is just the way that she is and I have accepted that.  You love people you love them for them faults and attributes.  I've had surgery and have had to have friends come to stay with me when my husband has had to travel for work because my mom was not the right person for the job.  I rarely tell her when I am in pain.  As a mom, I can understand that it is hard for her to think that her child is in pain; but we are completely different types of moms.  My youngest daughter is blind.  My daughter can tell me anything. I have never felt that I could tell my mom anything.  I feel that if I talk to my mom about my pain, I have to then console her expending more energy.  It is just easier to say that everything is ok.  My mom calls me with her medical problems, because I am a nurse, so in many ways, the roles are reversed.  I've accepted that.I love her for who she is and know that she is not one of the people that I go to when I need support!

My father died thinking that RSD was all in my head because a leading neurologist at University of Pennsylvania (who would be in his late 80's if he were alive) told him that it didn't exist and he believed him over me.  They had been friends for years and went to church together for over 30 years.  Even though I took him to a conference at Atlantic City where leading scientists talked about RSD (he only attended one talk and preferred to gamble the rest of the time) he didn't believe that it was true. He would rather believe that it was a mental illness than a physical illness.  That never made any sense to me.  Ironically he died of ALS (Lou Gerigh's Disease) which is also a neuro muscular disease.

I have two aunts who I am very close to.  They have taken the time to research RSD and understand it.  Being my mom's sisters, they also get very upset when they know that I am in pain.  I tend to down play my pain to them because again, it is more difficult to deal with their reaction than to just say things like "I'm hanging in there".

I do have cousins (the kids of these same aunts) that I can be honest with.  They are much younger than I am and have practically grown up with me having RSD.  They are in their 30's and I've had RSD almost 16 years.  They can tell by looking at me when I am in pain.  I have some friends who can read me the same way.  I don't have to say a word and they can tell how I feel.  My husband can often tell the same thing by looking at me.  My face is beet red, my body is swollen, etc.  My one daughter can't see those cues but the other can.

I tend to protect my girls and not complain to them.  That stems from the fact that they were in 6th and 8th grades when I had my accident and I wanted them to have as normal of a routine as possible.  It wasn't always possible but I tried.

Although some family members truly do try to understand what we are going through, can they really know what it is like?  Others don't even try.  Do we accept them for who they are?  Do we write them off and go on without the in our lives?  That's a personal decision.  Only you know how much stress it causes you to deal with the lack of understanding and how important these people are in your lives.  Many of us have so few people in our lives.  Friends disappear because we can't just spontaneously go out shopping or out to lunch.  They drop us like a hot potato.  I can count on one hand the friends that I still have pre-RSD.  Most of them are childhood friends.  Sometimes family is all we have. Sometimes even family bail on us.  Some of us only have other RSDers to depend on for support.  Whoever you have in your life, be thankful that they are here for you.  This holiday season, let them know that you appreciate them. It doesn't need to be with a monetary gift (most of us struggle in that way).  Just let them know that you appreciate what they do for you, that they TRY to understand what it is like to be you and that you love them.

To my RSD friends out there; I do appreciate all of the love and support that I get every day from all of you.  I look forward to our interactions in 2012 and wish you a happy healty new year with low pain, the support of your family and friends.

Nancy Renee

Monday, December 19, 2011


The holidays often bring parties and social events.  Many of us with RSD do not work and find that we now have very little in common with the rest of the world.  An example of this for me was this past weekend.  My neighbor was kind enough to invite us to her son's third birthday party.  The majority of the guest ranged from 31 - 41 (our oldest daughter is 30) and children 19 months to 10 years.  I have lots of friends and cousins that are in the same age range as the adults with children in the age range as the children so that wasn't an uncomfortable setting for me.  They had a great bounce house for the kids and many of the adults (which was out of the question for me of course).  I knew everyone there with the exception of one couple.

Since I don't work, have grown children, don't belong to any social organizations, etc. I have very little to talk to.  I don't want to talk about my medical situation (which dominates my life).  So I spent most of the time sitting by myself, just listening to the conversations.  I felt out of place and stupid.  I also have memory difficulties which makes me feel uncomfortable about talking about past events for fear I've remembered them incorrectly.

Unless you have RSD, you don't understand what it is like.  We are isolated much of the time.  Even when we are invited somewhere, we are still isolated.  The longer that we have RSD, the more isolated we are.  Family and friends may try to understand but they really can't.  It is very frustrated.

RSD is called the suicide disease.  Isolation is one big contributing factor (on top of the never ending pain of course).  Isolation is a horrible thing, especially when it happens in a group of people!

Sunday, December 4, 2011

Boycott CVS Pharmacies!

CVS Pharmacies of Florida announced this week that they are refusing to fill prescriptions of random physician’s controlled substances.  These are not physicians with histories of writing illegal prescriptions, greater than average prescriptions or any other reason.  When CVS’ biggest competitor in Florida (Walgreens) was asked if they would be initiating a similar policy by a local news organization; they said no.

This policy that CVS has initiated is not only unfair to physicians but it is unfair to those of us with chronic pain conditions like RSD.  There are many other chronic pain conditions such as cancer, MS, arthritis, etc. There are acute pain conditions such as fractures and surgeries that all require narcotics.  Doctors whose specialties are to treat these things are going to write a lot of prescriptions for narcotics.  That is only common sense.

So what is CVS’ reasoning given behind this policy?  It is to decrease drug abuse in Florida.  Yes, Florida prescribes more narcotics such as Oxycontin than the other 49 states combined. But there has to be some way to deal with this issue without punishing doctors who are legitimately treating their patients and without punishing patients with legitimate PAIN!

For the most part, doctors have been criticized for under medicating people in pain; not over medicating.  There has to be a way to combat this drug problem without punishing those who need these medications.

When people started using antihistamines to make crystal meth; they put it behind the counter, made you show your driver’s license and limited the number of pills that you could buy in order to decrease the problem.  Has it worked?  I don’t think so.  It has inconvenienced us.  But making me go to the drug store more often to get cold medication isn’t the same as not allowing me to have pain medication for one of the most painful conditions known to man.

It is for this reason that I am asking everyone, whether or not you live in Florida, to write to CVS and tell them how stupid this policy is.  Tell them that because of this policy, you are moving your prescriptions to their competitor.  It doesn’t do any good just to move your prescriptions to their competitor if they don’t know why.  Walgreens just happens to be right across the street from the CVS that I have used for five and one half years.  People with RSD usually take a lot of medications.  When I am in the pharmacy, I usually buy other things.  Everyone in my CVS knows me by name so they are going to lose my business.  I intend to tell all of my neighbors, and by way of my blog, tell others.  I hope that this will get them to change this stupid policy.  As many of you know, I’ve been angry at my particular CVS over some other issues so this is the straw that broke the camel’s back any how; but regardless of their other mistakes, this and this alone would have caused me to leave CVS in general.

I hope that you will write to CVS; whether or not you use them and tell them that as a chronic pain patient you think that this new policy discriminates against you and your physician!  Thank you!

Friday, December 2, 2011

Fighting Insurance Companies

Many times our insurance companies refuse to pay for things that our doctors order and we really need.  When I worked in home care, part of my job was to get insurance authorization for home care nursing for children who require in home nursing.  So, I have an advantage in fighting for my own care.  I'm hoping that I can share my experience with you.  The above link is someone else's information as I figured that the more information that you have the better.

For those of us with RSD, the main thing that we try to get approved is Ketamine. Here is my suggestion on how to get pre-authorization for Ketamine Therapy.  It is easier to get preauthorization than to have the treatment and have the insurance company deny your claim as you may be stuck paying for the treatment while you fight with the insurance company!!!

You need to get Ketamine preauthorized.  Most insurance companies are still saying that the treatment is experimental after 10 years.  If you want your insurance company to cover Ketamine Infusions and they are telling you that they are either “experimental”, “educational” or “investigational”; here’s what you need to do.

1)      You need to establish that you have CRPS/RSD by getting your RSD doctor to write a strong letter stating that you have severe RSD that will only respond to Ketamine.

2)      You need to write a BRIEF history of your RSD experience.  For example:

·         March of 1996 Franc Liss Fracture of right foot resulting in burning pain treated by casting and PT

·         March of 1997 After a year of continued extreme pain, a fusion was done of right foot

·         December of 1997, I was referred to an outpatient Chronic Pain Program at Bryn Mawr Rehabilitation Hospital when burning pain, purplish discoloration and swelling remained in the right foot.  This program was run by a physiatrist and included PT, OT, individual psychology, group therapy and biofeedback.  The Physiatrist ordered a three phase bone scan which showed that I most likely had RSD.  He started me on Neurontin and referred me to Hahnemann’s Neurology Clinic.

·         April 1998, I saw Dr. Alyssa LeBell who did a Laser Dobler Study and Bier Block. She confirmed the diagnosis of RSD.

·         1998 – 1999; multiple blocks including lumbar sympathetic, and thoracic.  Pain spread up the right side and to the left side.  Hospitalized for continuous epidurals, Lidocaine drips and finally for a trial of a medication pump.

·         February 1999; Metronic Medication Pump was placed.  Increasing amounts of medication were needed to get any relief.

·         2001; Dr. LeBell left the practice and care transferred to Dr. Robert Schwartzman who suggested Ketamine Coma Treatment in Germany in October.

·         Feb 2002 – 2009 Ketamine out patient Ketamine infusions and inpatient awake infusions maintained my pain at a tolerable level.

(notice that I didn’t go into the fact that I had my gallbladder out, had cancer, had back surgery, etc because it isn’t relevant to my case for Ketamine)

3)      You need to show them that Ketamine is no longer considered experimental.  I have put together this set of paragraphs showing scientific studies that Ketamine is now considered Level I treatment for CRPS.  Thanks to Barb, who had PA Dept of Health review her daughter Stacey’s case, I have the wording that got her insurance to reverse their denial.  I have removed Stacey’s information and made it generalized for you to use in your own battles.  Here it is.


There is nothing in the language of the health plan’s Definition of Medical Necessity that would prevent the enrollee from continuing to look for further treatment options for refractory CRPS. IV Ketamine treatment is medically appropriate for the enrollee’s condition; given to improve physiological function; consistent with the current medical literature; consistent with the diagnosis of the condition; is not given for convenience; and not considered experimental for this enrollee per the current standards of care in the medical community.

In regard to the Ketamine infusion, the health plan considered it to be in the Experimental or Investigational realm of treatment options for refractory CRPS.  Based on the discussion below, and the fact that anesthetic dose IV Ketamine is now supported by LEVEL I data in the literature, the enrollee feels that the enrollee does meet the criteria to receive this form of treatment.

The health plan deemed the use of IV Ketamine to be not “Medically Necessary”, but also stated that it was against the health plan’s policy because it was considered “Experimental or Investigational”.  This is not an accurate statement and goes against the available medical literature.  There are now two publications in the peer-reviewed literature that have LEVEL I date, derived from Phase III randomized, placebo-controlled clinical trials supporting the use of anesthetic level IV Ketamine in patients with refractory CRPS Type 1 (6,7) In the study by Sigtermans et al, they studied sixty (60) patients and noted a statistically significant improvement in pain control (p<0.001) in the group of patients and noted a statistically significant improvement in pain control (p<0.001) in the group of patients receiving IV Ketamine in comparison to the group that received the placebo infusion.  The study by Schwartzman et al was designed very similarly and also noted a statistically significant improvement in pain control (p<0.05) in the group receiving IV Ketamine.  In an older paper by DR ME Goldberg you could support the position that IV Ketamine was experimental/investigational (9) However, Dr Goldberg’s position is further clarified in a more recent publication (10) In this paper, he does not state that IV Ketamine is not efficacious or appropriate for patients with severe or refractory CRS, nor does he state that it should be considered only an experimental or investigational treatment modality.  What he does say is that there is selectivity in the responsiveness of various patients with CRPS to IV Ketamine and that this aspect of its use is still unclear and will require further study. Therefore, impatient admission for the admission of IV Ketamine is considered the standard of care in this enrollee’s case.


1.     Brehl S. An update on the pathophysiology of complex regional pain syndrome. Anesthesiol 2010;113:713-725.

2.     Albazaz R, Wong YT, Homer-Vanniasinkam S. Complex regional pain syndrome; a review. Ann Vasc Surg 2008;22:425-429.

3.     Rowbotham MC. Pharmacologic management of complex regional pain syndrome. Clin J Pain 2006:22:425-429.

4.     Ben-Ari A, Lewis MC, Davidson E. Chronic administration of Ketamine for analgesia. J Pan Palliat Care Pharmocother 2007;21:7-14.

5.     Correll GE, Maleki J, Gracely EJ et al. Subanesthetic Ketamine infusion therapy; a retrospective analysis of a novel therapeutic approach to CRPS. Pain Med 2004:5:263-275.

6.     Sigtermans MJ, van Hilten JJ, Bauer MC, et al. Ketamine produces effective and long-term pain relief in patients with complex regional pain syndrome type 1. Pain 2009;145:304-311.

7.     Schwartzman RJ, Alexander GM, Grothusen JR, et al. Outpatient intravenous Ketamine for the treatment of complex regional pain syndrome; a double-blind placebo controlled study. Pain 209;147:107-115.

8.     Jeon U, Huh BK. Spinal cord stimulation for chronic pain. Ann Acad Med Singapore 2009;38:998-1003.

9.     Goldberg ME, Schwartzman RJ, Torjman MC et al. Ketamine infusion successful in some patients. Pain Physician 2010; 13:E371-372.

 Please feel free to quote the article information directly.  It will not bother me in the least. If this information can help even one person get their Ketamine approved, then my efforts are worth it!!

Thursday, December 1, 2011

cold weather and RSD

As I have mentioned, I live in sunny Florida!  Well, winter hit last night and it dropped down to 40 and boy am I feeling it!  My head is pounding, my body is burning muscles are spasming and I'm two months away from what I know will be inpatient stay of Ketamine.  I hate the cold!  Although I find it very lonely here in Florida, I do not miss the cold weather of PA.

An RSD friend of mine said something profound; "if I could harness this burning and use it to heat my house, I'd be rich".  She was wishing that some good would come of this terrible disease.  Well, I like to think that some good has come of my having RSD.  I'd like to think that I am a more compassionate person because of what I have been through. I think that I am a stronger person because of what I have been through.

To all of you who are suffering in the real cold of the north, I'm sorry that you have to go through this pain and suffering every single day of the winter.  For today, I'm going to lay on the sofa, under a blanket, watch Christmas movies, look at my beautiful Christmas Tree, take some Nucynta, Klonapin and try to get through the day!!

I will hang in there today!!!

Tuesday, November 29, 2011

RSD and Cancer

Studies have shown that there is an increased cancer rate in people with RSD.  I personally can atest to this.  In the spring of 2007, I started bleeding vaginally very heavily (post menopause).  I had not yet found a gyn here in Orlando.  I called every gyn and none were taking new Medicare patients.  My PCP got me into see someone.  An endometrial biopsy was done and it showed abnormal cells.  There was a sign in this doctor's office stating that he didn't carry Malpractice Insurance; which should have set of red lights and sent me running, but my PCP recommended him.  A hysterectomy was recommended.  This doctor took my uterus and ovaries but left my cervix (he never did a pap).  When the pathology for my uterus came back, it showed stage 1 cancer.  At this appointment, he tells me that since he did the surgery laproscopically he had to cut up the uterus and since the endometrial biopsy only showed "abnormal cells", he didn't do a wash.  A wash is done to be sure that any cancer cells are washed out of your body.  He then suggested that I go to an oncologist for follow up.  I was devistated.

I went to the oncologist who wanted the pathology repeated before he decided what to do next.  He also did a pap.  The second pathology report also showed cancer but the pap also showed "abnormal cells".  The oncologist said that he needed to do a second hysterectomy to remove my cervix, lymph nodes and to biopsy my organs up to my aorta to be sure that cells didn't spread from the inital surgery.  By now it is October 2007 and I have the second surgery.  I felt like I was cut from stem to stern due to the lymph node removal and biopsies.

Surgery can cause spread of RSD and here I was having a second abdominal surgery in six months.  Fortunately with both surgeries I was given Ketamine as part of the anethesia and had very good post op pain management.  I was fortunate that there was no further spread of my RSD.

It is now four years later and I just had my annual exam.  I have one more annual exam in 2012, and if all is still clear, I will be discharged from the oncologist's care.

For those of us with RSD, we need to be sure to have mamograms, paps, prostate screenings, etc. to be sure that this increased risk of cancer that comes with RSD doesn't affect you.

Monday, November 28, 2011


Today is the tenth anniversary of the passing of my father.  He died of ALS.  When I took him to John's Hopkins for a diagnosis, they told me that there was no relationship between me having RSD and him having ALS.  Now there are some that think that there could be a correlation between diseases like RSD, ALS, MS, etc.

An old friend of my father's was a neurologist at U of P.  He was of the school that RSD didn't exist and was all in the patient's head.  He convinced my father that this was true.  For whatever reason, it was easier for him to believe that RSD was a psychosomatic illness rather than a physical illness.  As a parent, I know that it is difficult to see your child in pain; but I could never quite understand how it was easier to think that I was making up an illness than that I had one.  He died ten years ago today thinking that it was all in my head.  Perhaps the fact that I went to Germany for Ketamine Coma treatment before he died and for the short time between my trip to Germany and his death, was pain free validated that opinion.

We had so many more years other than the five years where he doubted the validity of my RSD that I have to remember him on.  I try not to dwell on the hurt that I feel knowing that he didn't believe that the pain was real.

My dad was born in Germany (a jew) in 1927 and emmigrated to the US at age 11.  Many of his thoughts and values were very European.  He was a hard working man.  My dad built his own business, Altman Weil, that still prospers today in spite of the fact that he and Mrs Altman passed away years ago. 

He was a good provider, a wonderful husband and a good dad.  My dad has a twin brother, John, who is still living.  I look at my Uncle and wonder what my dad would be like if he were still alive as well.  They came into the world together, but fortunately for my Uncle, Aunt, Cousins and me, they didn't not leave this world together.  My Uncle will be 84 next month!

At 73 yrs old, Robert I Weil left this world far too soon and is greatly missed by many.  I will not let one little blip in our relationship (his inability to understand RSD) affect my memory of a wonderful man!

This is one of my favorite photos of him.  He played the flute and loved to go deep sea fishing.  He volunteered helping Jewish Russian Immigrants prepare resumes and get jobs, he was active in his church and most of all a wonderful dad.

R.I.P. Robert I. Weil
You are greatly missed by all who knew you!

Saturday, November 19, 2011


November 19, 2011
Well, I haven't written anything in a few days as I've been doing a training class to be a Guardian ad Litem.  It has been very difficult not being able to work.  I miss nursing so very much.  I tried volunteering in a local NICU, but they weren't very accomodating about the amouth of area that I would need to cover or the number of hours per session.  If I could cover 8 units and be on my feet for 4 hours; I could work part time.  This program for the most part, allows you to make your own schedule and involves visitng "your child" once every thirty days either unannounced or in a planned visit.  I will be assigned a medically complicated child since it will best utalize my skills.

This week was very difficult as I had a 40 minute drive each way to the training, 7 hours of training, five days in a row.  I started off the week with a cold but I did manage to get through the training.  I literally fell asleep shortly after getting home, letting Nemo out and paying some attention to her.  Unfortunately that meant that I woke up in the middle of the night but there was no way that I could keep my eyes open!!

October 14th, I saw my RSD doctor.  He prescribed medication for my ever increasing pain.  I took the prescription to the pharmacy and found out that they needed to order it.  A week later they got it in and ran it through the insurance (why they couldn't have run it through the insurance while we were waiting for the order is beyond me).  The insurance company wanted preauthorization.  The pharmacist said that she would fax the sheet to my physician.  I called the doctor's office to tell them t be on the look out for the preauthorization form from my pharmacy (giving them both the pharmacy name and the pharmacist's name).  Another week went by and I hadn't heard anything from the insurance company.  I called them.  There was no record of a preauthorization.  I called the doctor's office.  They said that they never received a fax.  I asked why they didn't call me when I had called them to tell them that they would receive the fax.  They had no answer.  I went to the pharmacy (not knowing if the doctor's office had lost the fax or what).  The pharmacist (not the same one who faxed as she is now on maternity leave) pulled the file and saw that it was faxed but the fax confirmation said "fax busy" and no one ever refaxed it.  I took the form and faxed it to the doctor's office.  I called to be sure that they received it.  Ten days later, still no word from the insurance company so I called them.  Once again they told me that there was no request for preauthorization.  Ok, I know that the fax was received by the doctor's office since I faxed it and called to confirm.  I called the doctor's office only to find out that "it's on my pile to fax".  I was fuming.  By this time it had been over a month since the prescription was written and I had a follow up appointment in 5 days to discuss how I was responding to the medication.  I changed that appointment as the doctor is 2 hrs away and there is no reason to go and see him if I haven't had the medication at all yet.  The doctor's office assured me that they would fax it Friday.  Well Monday, I plan on calling the insurance company to see if they have received it.  If not, I will cancel the appointment with the doctor and find someone else.

In the mean time, I contacted Dr. S to set up inpatient Ketamine.  I heard back from him within 24 hrs, his Clinical Nurse Specialist contacted me within 24 hours of his email and 24 hours after that I had a date set to go up.  There is absolutely no comparesome in the treatment.  I emailed the doctor on Monday and by Wednesday I had a date set.  What a difference!!  Unfortunately, he doesn't do precribing for day to day medications.

I will be spending this weekend recouperating from my week of training as my feet are both swollen, red and miserable.  My entire body is burning and I have no energy.  Fortunately my hubby is in town until the Sunday after Thansgiving when he has to leave after lunch.

I hope that everyone has a great weekend!!

Thursday, November 10, 2011


Last Tuesday I took a tumble and started a flare.  Since then, I have had a headache.  I've taken my allergy medication and migraine meds daily which lessens the intensity of the headache but doesn't get rid of it.  This isn't the first time that I've had a headache that lasts more than a week, but it is so frustrating.  Things like reading, using my eyes, sunshine, etc. all make the headache worse.  So many of us with RSD get headaches due to muscle spasms, migraines, TMJ, etc.  I have digenerative disk disease in my cervical spine, which I'm sure contributes to the headaches.  I've had 2 cervical epidurals, which did help with the headaches before last Tuesday when I aggrivated everything with my injury.

The insurance company, doctor's offices and pharmacy are all giving me a headache as well.  In early October I went to my pain management doctor and he suggested trying something different for pain, Nucynta.  Several of my friends are on it so I decided to give it a try when my doctor suggested it.  I took the prescription to the pharmacy.  They didn't carry it so I had to have them order it.  When you sign on with a pain management doctor, you have to sign a contract that says that you will use only one pharmacy and only one pain management doctor.  A week later I got the call that the medication was in the pharmacy.  We my husband was on his way to pick it up,  I got a call from the pharmacist that the medication wasn't approved by the insurance company.  Now they couldn't have check this before they ordered it so that we could have been working on the authorization while waiting for the medication to be ordered?  Of course that would be too easy!! 

So the pharmacist said that she would fax the denial to the doctor's office.  I called the doctor's office to aler them to be on the look out for the form.  Two weeks later, I still haven't gotten a letter from the insurance company about their ruling; so I gave then a call. It seems that the preauthorization was never sent to them.  I got on the phone to speak to the doctor's office and they said that they never got any paperwork from the pharmacy.  I told them that I had called them to tell them to expect the form..and they couldn't call me to tell me that they didn't recieve it so that I could follow up?  So I went to the pharmacy to talk to the manager.  She pulled out the fax verification form in an attempt to show me that it wasn't their fault (no of cours it's no one's fault, right?).  When she pulled the form it said "fax busy" and they never resent it or followed up in any way.  So now I've waiting three weeks for this pain medication without anything for pain.  I went on the insurance company's web site and printed the preauthorization form and faxed it to the doctor myself.  I called to be sure that they recieved the form.  Now we wait, again to see what the insurance company says.  It is so frustrating to have to go through all of this when you have a diagnosis that says that you have one of the most painful diseases that there is and you are fighting for pain medication.  It never ceases to amaze me the ways that they try to torture us over our healthcare!!

For CRPS/RSD Awareness Month, here is today's post:

For my friends who are nurses, this is progress!

Kentucky Bill Would Require Nurses to Complete 2 Hours of CRPS Education
State/ Branch: Kentucky. House
Title: HB 234
Summary: Relates to training about complex regional pain syndrome; requires all nurses who are licensed and practicing on the effective date of this Act to receive two hours of training concerning the recognition and treatment of complex regional pain syndrome, also known as reflex sympathetic dystrophy by December 31, 2014; requires all nurses licensed after the effective date of this Act to complete training concerning complex regional pain syndrome within their first three years of practice.
Latest Action:
02/01/2011 Introduced.
02/02/2011 To Committee on Health & Welfare
Sponsor: Embry
We are asking all Kentuckians to contact Tom Burch at or 1-800-372-7181 and request him to choose this bill to go before it goes before the committee
For more information, please contact Carolyn Clemons
South Central KY RSD Support Group, 270.879.4023

Your RSDSA membership is important. There is power in numbers, and we would like to see our membership, currently over 7,000, grow to encompass all those who are afflicted with CRPS. When we speak to the legislature, the pharmaceutical companies, and the medical associations. Our voice is strong and our message is clear.

Anything you can do will be greatly appreciated by the CRPS community. We look forward to working with you. You can contact us online at

Wednesday, November 9, 2011

Ketamine Doctors Needed

Floridians With CRPS/RSD Wanting Ketamine Treatment

November 9, 2011

Dear Doctors;

            I contacted you earlier this month with information about Lidocaine and Ketamine Infusions used to treat CRPS/RSD. To show you that there is an interest in this treatment locally, I have gotten the signatures of people with CRPS/RSD in Florida who are interested in getting Ketamine treatments locally.  Many of is are traveling across the  country for these treatments.  We hope that you have read the research that I’ve sent you and will consider offering these treatments locally.

  1. Nancy Renee Cotterman; Orlando FL 32829

Tuesday, November 8, 2011

Ketamine in the U.S.

I have been fortunate enough to be able to go to Germany to receive Ketamine treatments that are not available to the general public here in the US.  I have learned of a veteran who received coma Ketamine here in the US last September.  He is the only person that I know who has received this treatent here in the States.  I describe my coma Ketamine experience in my first post.

I have also had awake Ketamine treatment at Hahnemann Hospital on several occassions; the most recent was in 2009.  Today, I will describe this 7 day hospitalization.  At Hahnemann, Ketamine is given in the ICU, on a cardiac monitor.  For me, it was given via my mediport.  Additionally, a PICC (peripherally inserted central catheter) so that they could do lab work without additional sticks.  The Ketamine was adminstered via my port and the lab work was drawn from the PICC.  The reason that they didn't use the port for both is that they didn't want to have to stop the Ketamine drip in order to get an accurate blood Ketamine level as this would interrupt my Ketamine therapy.

Prior to my Ketamine, I under went some testing; neurological, psychological testing and lab work.  The treatment was scheduled in advance as there is a waiting list for the treatment.  Once admitted and having the PICC like placed, the Ketamine was started.  The dosage was increased hourly until it reached a maximum of 40 mg/hr.  In the ICU, visitation was limited, no phone access and I was encouraged to just relax and sleep through as much of the treatment as possible.

For many, 40 mg/hour of Ketamine makes them feel "tipsy" and sleepy.  Along with the Ketmaine, I was given Clonopin and Versed to minimize the chances of hallucinations.  They also help you to relax and let the treatment work.

The theory behind Ketamine is that it is a MDA Inhibitor and acts to "reboot" the nervous system much like hitting ATL, CNT, DLT reboots your computer.  It took a full day for the admission process and to get to the full 40 mg/hr dosage.  I spent my time listening to music and watching TV.  I brought bottled water, juice drinks and snacks with me as hospital food isn't my favorite thing.  Ketamine also decreases your appetite and  wanted to be sure that my nutrition was good to protect myself from any germs that the staff may be carrying.  RSD suppresses your immune system and I wanted to boost it as best that I could with vitamin C rich foods/juices, being sure that I was well hydrated and eating small healthy snacks.  You are able to write in requests on the menu which makes a wider variety of foods availble to you.

For me, the week in the ICU with the Ketamine was a chance to have down time, to allow the treatment to work without the stress of traveling to and from the clinic like you do with the outpatient treatment. 

So how did it FEEL while on the Ketamine...I did not experience any hallucinations or negative effects.  I felt relaxed by the versed and spent 6 days of Ketamine at 40 mgs/hr.  Being in an ICU is some what noisy and sleeping can be difficult especially with frequent vital signs and lights on on the unit; however I was able to cat nap during the day as well as at night with the assistance of sedating medications.  I know that many people sleep the entire week while on the Ketamine.  Most likely because I had had much higher dosages during my two stays in Germany as well as many booster treatments; I did not feel drunk, tipsy or even sleepy.  I would say that I felt relaxed and that I did get relief from the treatment.

Ketamine seems to be a controversial treatment as far as some are concerned but so are so many other treatments for chronic pain.  Treament for RSD is as different for everyone as their individual sypmtoms and as different as we all are as individuals.  For me (having had almost every treatment available over the past 15 years) Ketamine has proven to be the best treatment for ME.  It has lessened the "burning" pain that I have felt all over my body.  Now I only experience full body burning during flare ups as opposed to prior to Ketamine when I had that burning full body pain full time.

At this point I am having a flare that is a pretty bad one.  There is still a waiting period for the treatment.  At this point I have to put myself on this list for a future treatment as I know that for ME this is my best treatment option.  I also know that I need regular "tune ups" of Ketamine to keep this at bay (the burning pain).

Monday, November 7, 2011

November 7th, 2011 Vacation with my hubby

My husband and I spent three days away together for a long weekend.  Every aspect of our little get away was affected by my RSD.  Two days before we left, I ran my good foot into an open glass door .  For a normal person, this would have hurt for a few hours.  For me, it has caused a flare in my RSD that has affected me for the past 6 days.

I have had an off and on again headache since last Tueday.  My right foot has been swollen and painful since and my full body burning.  It impacted our vacation because I really couldn't enjoy myself.  Like many of us with RSD, I didn't want to spoil this get away with my husband, so I did my best to carry on. 

I continue to fight my health insurance company over medications to help with my pain.  I went on vacation with my husband without pain medicatons since the insurance company has decided to fight me on the medications that my doctor has prescribed.  This is also an issue for so many of us.  The doctor sets a plan of treatment and then the insurance company shuts it down.  Never mind that in many instances the treatment is actually cost effective because it decreases hospitalizations.  The insurance companies don't want to set a president by approving a treatment.  They hope that we won't fight for our treatments.  We battle pain, misinformation and so many other things, why should we have to fight for our treatments as well?

Right now, I am trying to decide if I should set up another Ketamine treatment.  I haven't had one in two years. I have tried to find a local doctor to administer it so that I don't have to travel to PA for the treatments, but there is no one locally who will accept insurance.  Many people with RSD have to pay for their treatments out of pocket.  Many of us are on SSD or WC and paying out of pocket for these treatments is impossible or at best a strain on our families' finances.

It is 4:15 am and I haven't been able to fall asleep yet.  Due to pain and sleep disorders, many people with RSD don't get the restorative sleep that we need.  Today's information for RSD awareness month is about sleep:

RSD And Sleep Disorders

Are Sleep Disorders Common In People Who Have RSD?
--By R. Norman Harden, MD, Director, Center for Pain Studies, Addison Chair
Rehabilitation Institute of Chicago, Chicago, Illinois

Yes, I would say that at least 75% of people with RSD/CRPS, possibly as many as 90%,
have some sort of sleep disorder. Pain is, of course, the main culprit for those who have
difficulty falling asleep and for those who have difficulty staying asleep. At bedtime, the
mind starts to relax, and since there are no distractions the mind naturally focuses on pain.
Early morning awakening may occur if a person rolls onto the affected limb and is
awakened by pain.

Treating the sleep disorder is critical, not only because people who sleep well feel better,
have more energy, and are in a better mood, but sleep is critical to the body's
recuperation, repair and healing, especially with chronic disease. Repair and some parts of
the recuperation process occur only during sleep; for instance, 90% of Somatamedin C, a
hormone that is critical in maintaining nerve and muscle health, is produced in deepest
stages of sleep. If you don't make Somatamedin C, you are not going to repair tissues
from normal wear and tear, which in turn causes more pain. It is a vicious circle. People
in chronic pain don't get into these deep stages of sleep so essential to healing, and
Somatomedin C is only one example of critical neuroendocrine products produced during

We treat sleep disorders very aggressively. and try to use agents that hit "2 or 3 birds with
one stone." For example, some of the antidepressant drugs (such as nortriptaline or
doxepine) are actually great analgesics. The brain stem (where you produce several
critical neurochemicals such as serotonin and norepinephrine. coordinates pain, sleep, and
mood. These "antidepresseant agents" modulate serotonin and norepinephrine, critically
important for quality and quantity of sleep, normal mood and pain modulation. Since you
only have to take these agents once a day you can use them as anti-insomnia agents as
well as analgesics to help initiate sleep, prolong it, improve the quality of sleep, and relieve
the pain.
--The Stages Of Sleep--
There are five stages of sleep that cycle over and over again during a single night: stages
1, 2, 3, 4 and REM (rapid eye movement).Stages 1 through 4 are also known as non-rapid
eye movement sleep (NREM). Approximately 50% of our sleeping time is spent in stage 2
and 20% in REM. A complete sleep cycle, from the beginning of stage 1 to the end of
REM, usually takes about 90 minutes. An adult normally sleeps more than 2 hours a night
in REM.
Stage 1: a light sleep during which the muscles begin to relax and a person can be easily
Stage 2: brain activity slows down and eye movement stops.
Stages 3 and 4: deep sleep, during which all eye and muscle movement ceases. It can be
difficult to wake a person during deep sleep. Stage 3 is characterized by very slow brain
waves (delta waves), interspersed with small, quick waves. In stage 4, the brain waves
are all delta waves.
REM: It is during REM sleep that people dream. The muscles of the body stiffen, the eyes
move, the heart rate increases, breathing becomes more rapid and irregular, and the blood
pressure rises.

More Information On Sleep Disorders Available At: