Category: RSDS General Info

Written by Louis Siegelman, DDS

Many aspects of daily life are a significant challenge for patients dealing with chronic pain conditions like complex regional pain syndrome (CRPS) or fibromyalgia. Dentistry can often be an extremely difficult environment with its inherent discomforts. Most dentists provide their care with local anesthesia as the sole means of pain control. Some dentists will also use nitrous oxide, which delivers excellent analgesia, and/or a benzodiazepine, such as diazepam (Valium) or triazolam, for relaxation. A limited number of dentists can provide more advanced multimodal therapy that is within the limits of a dental license. Such dentists may be oral surgeons, dentist anesthesiologists, or others with extensive postdoctoral training in anesthesia and pain control. These dentists with more comprehensive training can provide intravenous sedation for oral surgical, pediatric, or general dental procedures.

A comprehensive evaluation and consultation should be the first step in developing a treatment plan that suits the patient’s needs. A detailed past dental and medical history needs to be reviewed. Co-existing mental health conditions relating to panic and anxiety, depression or posttraumatic stress disorder are considerations. Coordination with other involved healthcare providers, such as pain management doctors, internists, neurologists, and surgeons, may be required. All of this information forms the basis for appropriate dental and anesthetic treatment planning.

Multimodal treatment includes a pain management strategy for pre-emptive analgesia, intra-operative comfort, physical therapy, and postoperative pain relief. The goal is to cover as many pathways of discomfort for patients during the peri-operative period as is reasonable and indicated for specific patients and procedures. Possibilities include alpha agonists, NMDA receptor antagonists, antihistamines, opiates, acetaminophen, NSAIDs, benzodiazepines, steroids, anti-emetics, local anesthetics, and sedative hypnotics. Common routes of administration may be topical, oral, intravenous, or intramuscular. Skillful use of these medications can provide a patient experience that minimizes pain, swelling, nausea, and anxiety. Talk therapy with the dentist or mental healthcare professional can be instrumental in overcoming obstacles to care.

Many patients with chronic pain face constant suffering and may be unwilling to seek professional care for their dental conditions because of fear of additional pain. They may also expect the same level of anesthesia and pain control available for minor medical procedures in the dental environment. Trained dental providers are available, but it’s important for patients to ask questions like what was the type of training the doctor received, how many patients like your self the doctor sees, and how often he/she does these procedures? Many offices and programs offer information online about their services, and treatment philosophy. Calling the office and asking questions of the dental team members is a great way to see if a doctor will be best able to serve a your individual needs.

Louis Siegelman, DDS, is a dentist anesthesiologist practicing in New York City. Click Here to visit Dr. Siegelman’s website.

RSDSA Review. Summer 2009.

Written by Dr. Chu for the RSDSA blog.

As most patients suffering from Complex Regional Pain Syndrome know, long-term data regarding standard treatment for this oftentimes debilitating condition has been mediocre at best. In fact, most of the usual treatment available, until recently, have been extremely limited. Nerve-specific medications can have intolerable side effects and low responder rates. Injections such as sympathetic nerve blocks are typically short-lived. Even more advanced therapeutics such as Dorsal Column Stimulation (traditional SCS) have mixed results with patients reporting unwanted areas of stimulation or loss of pain relief over time.

The idea behind neuromodulation is simple, of course. Change the way our nervous system transmits pain signals by blocking it with low levels of electrical current delivered to the spinal cord via small implantable wires and replacing painful sensations with more pleasant ones, thereby giving patients relief. Traditional spinal cord stimulation has been used to treat a variety of chronic pain states. Originating back in, that late 1960s to treat refractory cancer pain, this technology has evolved to successfully help patients suffering from many different types of pain, including failed back surgery syndrome, chronic nerve pain, headaches, chronic pain that develops after trauma or surgery and many more, including CRPS.

I often tell my patients the simplest way to think about this it [is] to remember the last time you stubbed your toe. Between hopping on one leg and screaming at your furniture, you were probably also rubbing your toe. You instinctively do it because it makes your toe feel better. You are distracting your brain from the intense pain by introducing another type of sensation- the sensation of a nice massage.

But as I mentioned, traditional SCS is often not precise or targeted enough for patients with CRPS. Let’s say you suffer from complex regional pain syndrome of the foot that has been refractory to the usual conservative treatment. Spinal cord stimulation may be a reasonable option to treat the continuous pain in your foot, but you may also experience unwanted stimulation in other areas like your low back or thigh. Alternatively, doctors may be able to capture your painful areas with stimulation, but it may not provide durable pain relief.

Given these limitations with traditional SCS, pain physicians around the world have been so excited about Dorsal Root Ganglion Stimulation, a new, ground-breaking, novel treatment option for patients suffering from CRPS. Like traditional SCS, pain relief is achieved through an implantable medical device which delivers low levels of electricity. However, the primary difference is that physicians are now able to precisely place the stimulator leads to target specific areas of pain or damaged nerves, avoiding unwanted areas of stimulation. In addition, the therapy is “sub-threshold,” meaning pain relief is achieved without any paresthesia.

While this therapy has been available in other parts of the world for more than 5 years, the FDA only recently approve (Feb 2016) this treatment for the use in the US. Results from the U.S.-based ACCURATE study have recently been published. In comparing DRG stimulation to traditional SCS, the study found that after following CRPS patients for 12 months,

• More patients found pain relief with DRG stimulation (74%) when compared to SCS (53%)
• More patients reported better focused relief of their painful areas with DRG (95%) vs SCS (61%)
• More than 33% of patients in the study experienced 80% pain relief or better.

CRPS affects many patients in many different ways. More advanced treatments such as the ones discussed here may not be for everyone. However, if you or someone you know is suffering from CRPS, have undergone more conservative therapy without benefit, have significant functional limitations due to pain from CRPS, or continue to rely on high-doses of opiod therapy, DRG stimulation may be right for you.

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Written by Guest Blogger Juli Wordgirl

Chronic Pain Blogger, Juli Wordgirl, offers her insight into the short film entitled “A Happy Seven.” How does she think this relates back to the CRPS/RSD community?

Life with Complex Regional Pain Syndrome (CRPS) is very difficult for me. Over the past nine-years I’ve made some difficult decisions, and I’ve had to face the consequences of those decisions—whether they are my fault or not. But in the past two-years (especially the last six-months), I’ve made the decision to be pro-actively more positive in my mind-set. One of the steps I’ve taken in my pro-active path is finding a local chronic pain support group. The following review is based on my post on the support group’s Facebook page, which I wrote immediately following group May 2017. The support group meets twice a month (first Saturday of every month, and last Thursday of every month). The people there are uniquely qualified to offer support because they understand everyday life with constant pain. It’s so refreshing to not have to explain over and over again what’s no difficult about simply opening my eyes and getting out of bed. “A Happy Seven,” the short film we viewed, captures nicely, in video, life with chronic pain.

“Last night at support group, we had a great discussion. The group’s support was awesome. I know I felt better when I left; my physical pain wasn’t gone, but my emotional pain was lessened. The group was blessed with a visual treat of watching a short-film “A Happy Seven.” It’s about a day in the life of a young-woman who has Fibromyalgia. The following is my personal reaction and review of the short film. I encourage everyone to view this film when opportunity arises.

The film opens with a beautiful tree while the young-woman is speaking. Then startling, harsh FEEDBACK sound interrupts and the screen switches to the woman in pain crawling on a carpeted floor. She says, “I don’t want to slow down. I need to get up.” Soon it’s clear the feedback is an indicator for pain: the louder the feedback, the worse the pain

Scene switch to woman and her mother. The mom is overly concerned, looking at her daughter with love. The mother hen-pecks about her daughter’s meds, how her caretaking is going, and what her pain level is–maybe a 5? The woman responds, like we all do, that’s she’s fine and she smiles. But the smile fades into the blank stare of pain as she gazes out the window.

The next scene is the woman and her brother. They look genuinely happy playing together, while the mother looks on with consternation. The young-woman sees the look, lowers her eyes, and seems to feel condemned. Then the brother leaves the room, and the young-woman struggles to stand from the floor. Next, she is lying in bed but not sleeping. Flat on her back, completely still and unmoving, with tears falling from her eyes. FEEDBACK. The phone begins to ring on her headboard. She makes no move to answer the phone.

She is remembering a talk with a friend who is enthusiastically urging the woman to take a long-planned trip. The friend says to just do it, it will be fine, she will go slowly with the woman. The young-woman says, with blatant honesty, that it will never happen, but the friend ignores her and runs up the stairs ahead of her still making plans for a trip that is ripping the heart of the woman.

In the kitchen later, the sister and woman are peeling carrots talking about family when a sudden flare causes the young- woman to scream and fall to the floor. The sister sits with the woman until the flare passes, then asks about the pain level, “Is it an 8?” The woman says it’s more like a 7/10 for her.

The next scene is my favorite, because I hear it all the time. The young-woman is meeting with some “friends.” They call out what they think might be the cause of her pain: “It’s a disorder,” Arthritis,” Psychosomatic,” ” Too much dopamine,” “Get outside more, “It’s not even real, and (my favorite) “You don’t look sick.” The woman’s reaction is a swirl of non-stop thoughts: “You don’t see me, don’t know me, I’m in too deep, a burden, it’s too hard, I’m trying so, so hard, I need to slow down, stop looking at me like that! Just let me feel safe!”

A great illustration of fibro fog comes next, when someone asks a really easy questions of, “How long have you known your friend?” The woman stumbles for an answer, “Umm, umm, ahh, ahh, umm. We met at grade school.” How many of us do the same thing? I do it all the time. Light feedback grows to LOUD FEEDBACK!

FEEDBACK. Now the woman is throwing up. She’s crawling up stairs. She’s trying to start a shower. She climbs in, fully clothed, and just sits in the falling water. She is panting, with labored pain filled breath. The sister enters the bathroom, immediately see her sister, sensing her pain. So the sister simply climbs into the shower to wrap her arms around her younger sister. They both sit in the falling water.

Now the woman is dry and alone in bed, sleeping. The movie is closing, and her voice is heard saying, “Learn to breathe.” The screen switches back to the beautiful tree from the opening screen as her voice continues, “I may never feel good, but I can be well. And I can be happy.’ And the credits roll.

This movie resonated with me because I feel like I live in a constant “7,” except when I flare into a 10 or 15 or 20. “A Happy Seven” is beautifully scripted, filmed, and acted. It felt genuine to me. I felt like it was a day in the life of me. Relatability is a large part of targeting an audience, and this short-film did it well. These are the opinions of Juli Wordgirl, and are in no way affiliated with any group or persons. Once again, I encourage everyone, with any chronic pain disease or illness, to view this film in its entirety. Gauge for yourself and see what you think. Wordgirl uses and defines words of all sizes to create awareness of CRPS and related conditions. Word Up!”

This is the entire review post on the pain-group’s Facebook site. Embarrassingly, there were spelling errors found when I copied it into a Word document. Bad on Wordgirl! Oh well, even Wordgirl makes mistakes—that’s how CRPS works on the brain’s limbic system, right?

The point is: CRPS affects the whole person, not just the physical body. Recent scientific links have found that Fibro actually IS CRPS. For more information, please view Dr. Philip Getson’s YouTube.com video “A Different Approach Extended with Philip Getson, DO.” There are, of course, different opinions about the Fibro/CRPS link; but after thinking about the commonalities—how can they not be related [This is the opinion of Juli Wordgirl]?

Unfortunately, “A Happy Seven” is not currently available for general viewing. When it is released, I ardently urge everyone to watch its well-captured viewpoint of life with chronic pain. Word up!

Written by Samantha Barrett

What is your limit? How far can you truly push yourself and your CRPS? How do you gauge each and every day  when your ability changes by the hour? Samantha has experienced this and has some stories that may help.

As someone who has been living with CRPS for over a decade, I ultimately know what my limits are. Did I learn what they were right away? Absolutely not. There was a lot of trial and error in the process. But overtime, I’ve learned to read the signals that my body has given me. I’ve met a lot of people with CRPS in my time with it, and the one thing everyone is trying to figure out is what is pushing too far and when they can push more. While I’m not an expert, and I don’t play one on TV, I figured I’d offer a little bit of insight to this subject.

First of all, we need to make one thing incredibly clear. Only you can tell what your body is feeling and experiencing. Your best friend, mother, brother, neighbor, or local sales person cannot personally feel or experience your pain, fatigue, or anything else. Therefore, only you can make the decision about if you’re in too much pain to do something. Don’t get me wrong, there are days when I ask my family or friends if I should do something, for example: “Well, we just went to a movie. Do you think I should try to go shopping now too, or should I go rest?” In reality, I’m not asking them how I feel. Overtime, it’s become my warning (which they understand). I should be saying: “Hey, we just went to a movie, I don’t know how much longer I’m going to last, but we can try to go to a couple stores.” I’ve experienced something that I expect most people have. A group of friends wanted to go ice skating (yup, ice skating) and asked if I’d be going. I said no, my ankles can’t handle that and the cold puts me in severe pain. A few of them got frustrated with me and said I wasn’t even trying. At the time, I was devastated and debated on trying to go. I didn’t end up going. I tried to explain to them, even after it all settled, but they never understood. Needless to say, this type of thing happened a few times and I’m no longer friends with them. Trust me, you don’t have the time for that kind of negativity in your life.
While many of you have heard and use the spoon theory (which I do too, especially for POTS), that doesn’t always make sense to people. With CRPS, some days I can handle much more than others, while other days I can barely handle brushing my teeth. When I try to make plans in advance, I make sure to remind people that my ability to function changes with each day. Things like the weather, stress, sleep, activity, and more can affect my abilities. So, if I make plans to go to dinner with friends one night after work, I try to keep them updated during the day. Some days, I can push myself to go to dinner. Other days, I know that if I tried to go to dinner after work, I’d be paying for it dearly within 10 minutes of sitting down at the table. While cancelling or postponing is never fun, it is something you have to come to terms with. When making plans, I’d recommend making that clear.

Special occasions are tough. Whether it is a holiday, a milestone event, or a celebration, most of the time we don’t want to miss these events. If I know I have something big coming up, I try to take it easy for at least a week in advance. I still work and do errands, but I won’t do anything extra. When the special occasion comes up, I try to make sure I take it easy during the event. If it’s something like Christmas, I’ll wake up, go out and open presents with my family and eat our cinnamon buns (tradition), but then I’ll go sit or lay down for a bit. We do all of our prep for holidays the entire week before. Then, when it gets closer to people coming over, I’ll get up, get dressed, and head back out to the living room. I’ll help out here and there, but I save all of my energy for when people are actually there. That night, I go to bed as soon as I can to start trying to regain my strength. While it hasn’t happened yet, I’m doing a similar thing for my wedding. I took a few days off before the wedding (both to finish last minute details and to rest). The rehearsal will be short, I’ll sit for almost all of the rehearsal dinner, and I’ll hopefully go to bed early. My bridesmaids are staying at my house the night of the wedding so they can help out the next day. I’m getting my hair and makeup done at home, I’ll be resting up before I put my dress on, and we made sure to factor in some time to sit down and relax in our prep room at the wedding venue. Unfortunately, to save my energy, this means I’ll be missing out on my cousin’s graduation party, but I have to conserve my energy and keep my pain and stress low, especially since they live a few hours away.

Now, life will always have stressors in it, that is inevitable, however there are times when stressors are worse than others. Every day stress can be pushed through (i.e. traffic, work, what to have for dinner, etc.). But there are some stressors that require you to take a step back, absorb what’s happening, and rest your body up. These stressors are major events or major news that rock your world a little bit. When your body is under a lot of stress, your pain levels can escalate and your immune system can be lowered (again, I’m not a medical professional). But it is during these times where you need to take care of yourself.

If there is one thing you take away from this blog, I hope that it is you must take care of yourself without feeling guilty. We are only given this one life to live. Yes, we’re living it with pain. But we just have to adapt and keep on moving forward. We know what our bodies can handle, what will trigger our pain, and how to cope with our pain in most cases. Take charge of your life, push yourself, but not beyond your breaking point. Live life to the fullest and remember to be confident in your decisions. You have to do what is best for you.

Written by Alyssa Skillman for the RSDSA blog. Reshared with permission.

Alyssa Skillman, RN, BSN had the wonderful opportunity to create a canvas and acrylic painting for the Boston Scientific Neuromodulation headquarters in California. They have a program that allows their patients with implanted devices to create artwork and send it in to be hung at the corporate office. Alyssa stated, “My rep knew I like to paint so she was excited to get me into the program. The company sent me the painting supplies and guidelines (for consistency purposes). This is what I created and the meaning behind it.”

Thank you for the opportunity to share my artwork. I hope you will take a moment to read what this painting represents and what it means to me.

I based this painting on the Bible verse Matthew 6:26, that says “Look at the bird of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they?” This verse means a lot to me, because it reminds me to fully trust in God. Living with CRPS (Complex Regional Pain Syndrome), it is easy to feel anxious about the future.  This verse reminds me that the Lord cares for me, knows my every need, and will provide.

The trees represent each season of the year: spring, summer, fall, and winter. They also represent the seasons of life. This symbolizes that no matter what season we are going through in life, whether good times or hard times, it reminds us that the Lord is always with us in every season life brings.

The birds in the painting are a representation of the birds mentioned in Matthew 6:26. However, notice that all of the birds are the same color except for one. One bird is orange, while the rest are black.  The orange bird represents a person with CRPS. This signifies how CRPS is an invisible illness, and how patients like me often blend in with everyone else even though we are different.  Even though you cannot see our pain, we try our best every day to fly right along next to the other birds.