My Experience With Medications

My first thought when asked to write my experience with medications, was that my story might be boring, as I take so few medications. After more thought, however, I kind of concluded that my story is not that uncommon. I used to think it/I was weird to be so chemically sensitive, not just to meds but other things as well (like herbs, certain supplements, and many fragrances, etc). But, over the years, I've met many others with RSD/CRPS who are likewise chemically sensitive. Still, we all  know that, despite the commonalities, there are many differences, be it with symptoms, treatments, medications, or whatever, proving once again there is no rhyme or reason with RSD/CRPS. Though some can take opioids, some can't even take aspirin. I probably fall in the middle of the spectrum. Though hyper-sensitive, I have found some meds I am able to take.

 

Having had RSD/CRPS for 29 years, I can't remember the names of all the meds I have tried and doubt they are all still in use, anyway. I do know I have tried many NSAIDs (Nonsteroidal Anti-Inflammatory Drugs) over the years, such as Naproxen in earlier years, which I couldn't tolerate, and Celebrex in later years, which I could tolerate. Other anti-inflammatory drugs I tolerated well were Bextra and Vioxx, which were ultimately deemed unsafe and taken off the market. In the end, NSAIDs caused damage to my esophagus and gave me a stomach ulcer. Though I still take an anti-inflammatory, I have switched to Meloxacam because it's a lower potency and it's just enough to take the edge off my pain.

 

Though I have tried Opioids/Narcotics, they didn't work out for me. Vicodin and Percocet were too nauseating. Hydrocodone was too constipating and made me sleep alot. Even, while awake, I was drowsy and unproductive. Plus, the dose kept needing to be increased and I was worried about becoming addicted. My overall thought is, if medicine helps the issue at hand but creates other problems, it defeats the purpose. I would just be exchanging one problem for another.

 

I also take the Anti-seizure/Anticonvulsant drug, Lyrica, which works well for me; whereas, Neurontin did not. The NSAID and the anti-seizure help by taking the edge off my pain. For a new injury or a flare, I supplement with Tylenol Arthritus. Beyond that, I've learned or chosen to cope with the pain. Admittedly, my pain is less than it used to be but this has always been my method/routine, regardless of my pain level. The only difference is how many tears I've cried, then (with greater pain) versus now (with lesser pain).

 

In recent years, Namenda (the drug used to treat Alzheimer's Disease) has been used off label to treat RSD/CRPS. It is an Anesthetic that acts to inhibit glutamate, which transmits pain messages to the pain receptor neurons.   In layman terms, it would help reduce the pain by blocking /reducing the brain's mis-firings. I took this med for a short time. Though there was no negative reaction to the drug itself, the side effect of constipation caused me to be severely impacted. Despite taking precautions, nothing could have prepared me for that situation. I believe Namenda is a good drug and a viable option for treatment of RSD/CRPS, but it's effect on me is not one I care to re-visit.

 

Nexium, an Acid reducer, is also a staple in my arsenal, since I suffer from GERD. Before taking Nexium, I took prescription Pepcid, which didn't do much at all for me. I also require an Anti-fungal, which, too, is not uncommon with RSD/CRPS. The one I take is called Ketoconazole. Though it doesn't cure the problem, it controls it better than the other two meds I previously tried. In my experience with RSD/CRPS, it's been a case of injure easily/ heal poorly, meaning that each injury has healed partway and stopped. I see a similarity with medicine, in that it helps but doesn't heal (i.e. it goes partway and stops)... random thought!

 

For Diabetes, I take Glyburide. I first tried Metformin but reacted to it. So I stopped taking it awhile, then tried it again and reacted to it again. My doctor laughingly says, when discussing medicine side affects "Well, if it can happen, it will happen to you." I took the blood thinner Plavix for many years with no problem, then suddenly I couldn't take it anymore. So now I take low dose aspirin to prevent my blood from clotting.

 

I took Glucosamine Chondroiten for at least 8 years and it worked like a miracle product but later, when I was on Neurontin, the Neurontin conflicted with the GC and I could not take the GC after that. The Neurontin actually conflicted with another supplement, as well. Ultimately, the Neurontin burned my scalp and body, requiring me to discontinue it's use.

 

In my wellness regimen, I take extra (though not massive) amounts of key supplements like multi vitamins, Calcium, Magnesium, Vit. D & C. I might add that my hypersensitivity is not only to what I take, but also how much. So that's the story of a chemically sensitive patient. For others of you with the same situation, I hope you have a doctor who listens and works with you to find what helps you the most.

 

Copyright Mary Jane Gonzales

Written for Reflex Sympathetic Dystrophy Magazine #2

The Art of Providing Care for an RSD-er

I have had the pleasure and challenge of providing skilled home health care for someone with RSD for the past three years. For those of you who may be unaware of what RSD is, as I was, it is Reflex Sympathetic Dystrophy. It is in short a chronic, debilitating pain disorder for which there is no cure. After learning of what RSD was, then came the question, how do I treat it?

Healthcare for an RSD-er is complicated because they have unique challenges that impede care by traditional means. Routine things such as taking blood pressure, drawing labs by venipuncture, traditional massage and therapy can all be detrimental to someone with RSD. Another challenge is that the general mindset of the healthcare community is to be curative. If there is a problem our aim is to fix it. There needs to be a shift in focus to maintaining or sustaining quality of life if we are unable to improve it. Patients with terminal conditions receive palliative care, but people with chronic conditions don’t always have that option.

One important aspect of providing care for someone with RSD is to be patient and listen. Some members of the healthcare community have a reputation for being bullies. We can rush in, look at a chart instead of the person in front of us, half listen to what they say and offer generic textbook treatment all in about fifteen minutes. What I have learned is that listening to a patient and digging deeper into a patient’s story by asking questions will generally lead to a solution or option for better care. There needs to be a willingness to step outside of the box of traditional treatment and consider new ideas.

I am fortunate that the one person that I have cared for with RSD is Mary Jane Gonzales. She is an advocate in the RSD community and an advocate for her own care. Her desire to educate and spread awareness of this disease is commendable and admirable. I have become a better nurse because I am her nurse. 

by Inger Daniels

RSD Interview - with Elizabeth Alviani

HOW AND WHEN DID YOU GET RSD?

It was 1993. I was at work and fell down one step, which broke my leg and foot. Compound fractures and surgery right away.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

I can no longer do the things I used to do. I had to stop working. I’m in a wheelchair now. The pain is unbearable. I stay home a lot.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

Yes. My husband, Geno, has been there for me through it all. My parents have been there, too.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

Yes. I feel God chose this path for me for a reason and now it’s my job to walk the path and believe God knows best. He will lead me

HOW HAVE YOU REINVENTED YOURSELF?

I do crafts and play video games. I am in a group at the YMCA, which I just joined. It’s a pool class called "twinges in the hinges". The rule is:  if it hurts, don’t do it. I’m with older adults and they are great. Most of us are in pain, so we understand each other.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

Yes, it has strengthened my faith. I do believe that my cat Winston Churchill was God’s gift to me. I found her two years after I got hurt. She was two weeks old. I worked with her and made her strong. In return, she is my rock. She is now eighteen years old. I have other pets that I look to for comfort, too. They look to me, also. Additionally, I have talked to student doctors and taught them about RSD/CRPS.

WHAT DO YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?

I want them to know how RSD/CRPS takes our lives, and the burn and hurt we go through on a daily basis. We need more awareness to get more treatments and, maybe, get a cure.

*THESE ARE GENERAL QUESTIONS. IF YOU HAVE MORE TO SHARE, PLEASE DO SO HERE.

I have gone through countless surgeries and blocks. I have two SCS systems implanted. I have had all different kinds of medications, PT, and more. I have had RSD for twenty years now. It is never ending. I will be getting ketamine infusion done. We need more. We suffer long and hard. Please help us.

RSD Interview - With Dannel Leon

HOW AND WHEN DID YOU GET RSD?

On May 10, 2011, I had Ulnar Nerve Entrapment surgery and I developed RSD about a week after the surgery.

IN WHAT WAYS HAS IT AFFECTED YOUR LIFE?

I was unable to use my hand to lift items or to cut my own food, and the pain was terrible. I wasn’t diagnosed until two months later and I felt my doctor and physical therapist should have listened to me. I was made to believe the pain couldn’t be that bad and I wasn’t working hard enough in physical therapy. It was hard to allow my family members to cut up my food, shop for my groceries and help me get dressed. I developed severe depression for over a year.

DO YOU HAVE A GOOD SUPPORT SYSTEM?

I do have a wonderful, loving support system. My husband has been so great and supportive. My son and daughter-in-love asked me to stay with them while I had various treatments for pain. Their love and assistance helped me accept my disease and grow stronger.

DOES FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?

I definitely grew closer to God and He showed me how to help others. Facebook groups have been a great source of information and support. When I read other RSDers' posts, I realize my disease is milder and God has given me great compassion for others who struggle. I understand the verse, “give thanks in all circumstances; for this is God's will for you in Christ Jesus.” 1Thessalonians 5:18. I now look for the rainbows after the storms.

HOW HAVE YOU REINVENTED YOURSELF?

I am more patient with myself now. I give myself permission to nap and rest. I learned new ways to do things with one hand. I don’t feel guilty when I have to decline invitations or shopping trips. My health and abilities are limited, so I’ve learned to put my health first and then I can save my energy. I have other health problems in addition to RSD, so I’ve learned to prioritize.

HAS ANYTHING GOOD COME FROM THIS TRIAL?

My family has grown closer together. I learned my doctors were not in charge and had put my health at risk. I had to fire them and select new doctors. I deserve good medical treatment and respect. I have learned to research my medical treatments and work with my new doctors as a partner. I have also developed some close, wonderful relationships with several RSDers and I thank God for this.

WHAT THINGS DO YOU MISS THE MOST?

I miss my energy, as well as, freedom from pain and limitations with my hand. I am independent and now I must rely on my support system for many things.

WHAT DO YOU WANT THE GENERAL PUBLIC TO

KNOW ABOUT YOU AND/OR YOUR DISEASE?

This disease is real and, when doctors and physical therapists ignore your symptoms, it adds to the pain. There are many doctors, nurses and physical therapists in the medical field that have no knowledge about RSD. They assume you cannot be sick and you are making up the symptoms. You have to be your own advocate and fight for treatments. If I had cancer, no one would doubt the disease, but I have RSD and some people do doubt it.

The Hastening of the Wasting

Having been asked a number of times about the pain of muscle atrophy, I decided to answer in a blog post in the hope of helping others. Bearing in mind - I am not a clinician, this is my experience and assessment of muscle atrophy.

1. First, there's muscle atrophy that goes on beneath the surface that is not visible to the human eye, which I call weakening. 

2. Then there's the flab/ rippled, Sharpe look, which I call wasting - denoting a process.

3. Then there's the gaping hole, which I call loss - because it's finally gone.

The first stage is discomfort, for sure.

The second stage has an added sensation of movement that feels like rolling or rippling.

The third stage is a deeper, more intense pain; like bone on bone or metal to metal. The picture it evokes in my mind is that of a car when the breaks wear out.

Just as everyone's RSD pain is different, I think that may be true of atrophy also. For example, I think the more frail one is, the more painful it could be.

I would welcome your thoughts, whether clinical or practical.

Very truly yours,

An expert patient

Interview with Author Barby Ingle

1(a). What inspired you to write your first book related to pain issues? In 2002, I was in a minor car accident and diagnosed with whiplash. Willing to do anything to get out of pain, I went into the hospital in November 2003 to have my first rib taken out to make room for my nerves and blood flow. Earlier that year I had also undergone a shoulder surgery. Then in 2004, I had to undergo an additional rib resection surgery. Since about a month after the accident, I attended physical therapy, which was excruciating and seemed to make things worse. Finally, in May of 2005, I found my way to a pain clinic here in Arizona. My doctor took the time to listen to my history and look at me. The thought of being examined again was frightening. After finding so little information out there and having so many doctors, who did not know about RDS, try to treat me, I realized that I am the one who has to teach myself and my caretakers. While teaching them, I have learned so much myself that I was inspired to write RSD in Me, to share the tools I wish I had in my starting stages of RSD. I want others fighting the same battle to have the whole story and know they are not alone. In my research, I have found very little literature that tells the whole story; I know how important it is to have the big picture. 1(b). And what inspired you to write every book thereafter? After I achieved remission, I wanted to tell the most hopeful part of my story to let others know that there should be hope and that there is help! That is when I shared the remission story in my second book; ReMission Possible. My third book came about because a patient asked me to explain how I walked through the health system and got the help I needed. It is a behind the scenes look into access to healthcare issues; The Pain Code. I also developed a workbook to go with the book, as a tool patients can use to walk through the minefield of the health system successfully. 2(a). How many books have you written, thus far? I've written seven, but only four of those are on RSD/Pain. My works include: The Cheerleading Coaches Handbook – how to coach cheerleading and dance Cheerleader; The American Icon - contributor The Wisdom of Ingle; Fall Down and Get Up in Half a day RSD in Me! A Guide To Living With RSD And Other Chronic Pain Conditions Remission Possible; Yours If You Choose To Accept It The Pain Code; Walking Through The Minefield Of The Health System The Pain Code; Journal And Workbook 2(b). And which is your favorite? My favorite is yet to come. It is Aunt Barby Hurts. I am working on this project with my brother and it is about having a relationship with children that is strong and healthy even if you have chronic pain. My brother is also a chronic pain patient and I am closest to his son, because he took the time to teach him from birth how to interact with me, so it hurts the least. So I am currently working on the children’s book; Aunt Barby Hurts and a book about keeping intimate relations strong with my husband; Real Love and Sex for a Chronic Pain Patient and Their Partner. I am also working on a follow up book to The Wisdom of Ingle with my father based on life lessons we have learned and want to pass on to future family generations and the world; The Wisdom of Ingle; All I ask is you try your best. Once I am done with these I will have reached my goal of being a part of 10 books being published and will probably end my publishing career. 3(a). What would be an average day in your life?  Wake up at 9am. Take my medications. Brush my teeth. Spend a few hours with my husband. Eat brunch. Answer some emails. Take a few phone calls. Send Ken off to work. Take a nap. Answer some more emails. Eat dinner. Watch a movie or some TV. And head to bed. I don’t do much physically at all. I try to avoid injuries and traumas at all costs. And, if it is a rainy day, I spend most of the day, if not all, in bed. I try to travel out of town to do events only once every 2 months to help save my energy and keep me feeling good. And I try to do one awareness event a month when I am home. It could be an online event or something going on here in Arizona. 3(b). And what would be an average day of the foundation? The Power of Pain Foundation (POPF) has over 100 volunteers; board members, ambassadors, event volunteers, and executive staff. Each of us does our part to keep the foundation going. We do everything from our mentor program, setting up conferences, sending out resources packets and speaking publically on legislative issues involving access to healthcare. With each of us doing our part, it takes the pressure off the rest of us. It is great to work with the POPF team to put a big spotlight on pain. 4. In this “alternate life”, what do you most like doing; writing books, writing grants, public speaking, etc (?)  If I could have back, what I thought my lifetime career would be, I would be coaching collegiate cheerleading and dance and still running my former company; Cheertec, Inc. 5. Is it safe to say that there’s a parallel between your pre-RSD life and your post-RSD life, in the sense that you were a cheerleader then and you’re a cheerleader now, just that one was physical and one is not.  There is such a parallel. I remember being 4 years old and my father took me to a professional soccer game where there were cheerleaders on the field. I was hooked! I told him that I would be a cheerleader the rest of my life. He told me that was not possible. After my accident and developing RSD, I thought he may be right. One thing I learned as a cheerleader, the game isn’t over until it’s over. So keep the hope, keep the smile, and keep the spirit. I readjusted my thinking and found another way to be a cheerleader. I am now a mental cheerleader. A cheerleader of hope and inspiration! I will forever be a cheerleader! *\O/* 6. In the same vein, who has been your biggest cheerleader?  I have had three major cheerleaders over the past 11 years. My biggest cheerleader has been my husband who I met 10 years ago. He has been with me every step of the way. Second, is my father who has been there for me since the day I was born, who has hopped on a plane at the drop of a dime to come help me and Ken get through whatever we need help with at the time. And the third is Paula Abdul. She has shown me that you can still live life to the fullest as an RSD patient. If she can do it, so can I, and if I can anyone can. Her calls and messages mean the world to me! 7. Another parallel would be being part of a team, which you were in your cheering/coaching days and you are now with Ken. Do you have any advice or encouragement for others who may not have that benefit? I would say to those who don’t have a great support with their relatives to remember that family is who you make it. If you are not getting the support from your immediate family relatives, turn to other places. Reach out to local church members, support group members, positive people who can help you and encourage you, as needed. But, even with so much support from the family I have and have made, I have come to realize that I am the only one responsible for my health. Search out resources! If I had a resource like the ones available now, this when I started, I would have spent a lot less time, money and frustration working towards remission. Do not lose HOPE. There is research going on and the government is taking notice of this debilitating disease. 8. Tell us about your current condition i.e. how well do the Ketamine boosters work for YOU? Meaning, do they lower your pain or remove it altogether? I am currently in “remission”. I have come in and out of remission since Dec. 2009. The ketamine infusions can bring my pain down to a 0. I am still greatly affected by barometric pressure changes, but instead of a pain level 10 with vomiting and passing out. When the infusions are helping and I am in “remission”, my pain goes up to 2-4 pain levels. Which is nothing to complain about since before infusion therapy I was constantly at 9-10 and the best any treatment option did for me was lower my pain temporarily to a 6. I am very pleased with my progress, remission and long-term outlook. 9. Do you get boosters on a set schedule or an “as needed” basis? I get my boosters on an as needed basis. The shortest between booster infusions has been 2 weeks and the longest has been 4 months. In Dec. 2009, I was fitted for an oral orthotic which lowers brainstem inflammation. That has helped me a lot with balance, coordination issues. It also helps me wear shoes that enclose my feet. Up until then, I was unable to wear shoes for more than a few minutes at a time, even with the infusion therapy. 10. What new projects do you have coming up in the near future that you‘re free to share with us? My two biggest months of the year are September for Pain Awareness Month and November for RSD/Diabetes/Neuropathy Awareness Month. This September I will be attending PAINWeek, leading a Pain Pathways Magazine FB chat, speaking at PAIN Summit, featured in the USA Today Chronic Pain supplement, and participating in 2 radio shows. In November, or NERVEmber as I call it, I will be hosting Comic Pain Relief show here in AZ and also hosting 30 days of awareness tasks through the Facebook NERVEmber page. I am also scheduled to be on the cover of a national magazine with some special friends of mine. We already shot the photos and I can’t wait for everyone to see this project. Most of all, I like to take on projects that give me extended time to work on them so that I don’t have stress or pressure in my daily life. I also like to complete tasks versus ongoing projects, so I take on projects that are short term and I can better handle them, making them more successful. Thank you, Barby, for sharing with us and giving us a closer look into your life. I've enjoyed hearing your story of remission, the hope of all chronic pain sufferers. Thank you for all the good work being done by the Power of Pain Foundation, and much success to you in future endeavors.

Interview with Author and Designer Deeann Elizabeth Pavlick

1. What inspired you to write your first book?
I always wanted to be a writer when I was young and have been writing since I was a child, but I only published after I was diagnosed with RSD and saw a pain management specialist who told me, after reading my logs, that I had the ability to write. Because of the RSD, I wrote small books, as I was able, on the subjects or projects that were within my knowledge or expertise. My inspiration is why I write. My artistic quality is why I write so many different genres.

2. How many books have you written, thus far? And which is/are your favorite?
I have written eight books and three magazines, so far. The children’s books are my favorite as they are very sweet and get a good response from the parents and grandparents. Plus, the children love them, which makes my day.

3. Do you have a set writing schedule or is it just as you feel inspired?
I write/create as I’m inspired; whenever the feeling strikes me. 

4. What prompted you to start designing jewelry?
I have been designing since I was very young. I went to school for Interior Decorating when I was twenty-five. From there, I owned several shops and designed in all of my shops. Jewelry is just one of the items I design. 

5. Where do you find the time for all that you do? Or what would be an average day in your life?
While running my businesses, most of my life, it was a daily routine. But, now, there is no set time or average number of hours a day. I suffer from RSD, Fibromyalgia and AFib of the heart, so my day and what I do works around all my ailments.

6. Compare your pre-RSD personality to your post-RSD personality.
My personality before RSD was vibrant, always smiling, happy, and on the go all the time. After my RSD, it changed my personality and my life. I was in pain 24/7, trying to live my life with the disease and all the emotions that come with it. My Fibro got worse and so did my heart problem. I wasn't able to live the life I was used to, which put me into depression. So, today, I am not the same person, but I am still living my dreams, just not as fast as I had hoped.


Thank you, Deeann. It's been a pleasure talking with you and learning how things came about in your life that led you to this point in time. You are certainly multi-talented and a good example of perseverance. Congratulations on all your success and blessings in your future endeavors.