September 16, 2013
Like you, I am also having issues in my quest for finding healthcare. I want to share some of my discoveries and “ahh haa” moments with you. I also want to share resources I have been given or found on my own. As my previous blog entries show, I do not want to control my pain with opioids on a daily basis. This is my right as a patient; I will not agree or disagree with what you feel is right for you. I also have a personal aversion to spinal cord stimulators or medication infusion pumps. For me this would not work since it is not worth the risks due to the potential for problems in the future which require future surgeries. I also am not a fan of the limitations that SCS would impose on me. At this point in my treatment I am not willing to consider these extreme treatments however, if nothing else works my decisions may change.
1. This being said, I am straying away from pain management doctors treating my RSD. In my experience pain management doctors only treat with opioids and implants, I want to treat the cause that leads to the pain instead of putting a bandaid on the problem. My recent encounters with Pain Management doctors thinking that I am desperate for them to be my doctor! I will not jump through their hoops; letting them put things in my body (medications or otherwise) as a contingency factor to be seen in their practice. I also will not sign a contract for narcotics that says “I will be prescribed narcotics as my treatment, I will not receive medications from other doctors and I have been explained alternative options, therapies or medications” before I even speak with the pain management doctor! Be careful what you sign, you can be accused of violating that contract and it can make receiving treatment from other physicians difficult. This will allow the doctor to have total control over you and your treatment. Recently I was given forms to be completed before I saw the doctor. In essence, I would have blindly signed a contract stating that it had been discussed and explained when I had no idea what the ramifications would entail. Do not allow any doctor, or any person for that matter, BULLY you into a decision regarding any treatment with which you are not comfortable. You are entitled to second, third, fourth and as many opinions as you feel you need!
2. Neurology, another avenue of treatment for RSD, approaches this disease from a different perspective. My neurologist does not seem to have any interest in my RSD and at my last appointment regarding my migraines acted as though RSD was not an issue he would bother with. This doctor is well known and well regarded in my area thus I will not seek treatment at this time from neurologists.
3. Per the new 2013 guidelines for the treatment of RSD Recreational Physical Therapy is recommended. Personally, I have had more success with this regimen in comparison to conventional physical therapy. Targeting your specific needs you may need to employ several therapists each specializing in areas that you enjoy and targeting your specific needs. I currently use horse therapy and due to progress will begin to add ballet for body mechanics and muscle strengthening without using weights. Since RSD has a negative response to stress I will be choosing activities that I enjoy; this will allow me to decrease stress during therapy thus decreasing pain and accomplishing more. My therapists understand my limitations and should be able to alter the “drills” to target my specific needs in working towards my goals. Ballet provides flexibility, joint range of motion and does not add additional weight on the joints while still promoting proper body mechanics to strengthen the muscles through your entire body. Anyone who decreases activity looses muscle in the whole body not just the affected area. Think outside the box! My insurance company is working with me on finding the best plan for me.
4. Chiropractors who specialize in the nerve system can be very helpful! Be careful and do your research. I have gotten a lot of relief from the right one!
5. Recently, I have begun to narrow my search to doctors who concentrate on the Autonomic Nerve System and/or its disfunction. This special interest can fall within a myriad of specialties. The autonomic nerve system is made up of both the sympathetic and the parasympathetic nerve systems. These are supposed to compliment each other, when they are out of balance it allows one to “take over” and be more prominent. Regardless if your parasympathetic system is weak or the sympathetic system is too strong, both of these circumstances can lead to the overactivity of the sympathetic system resulting in RSD, CRPS or whatever name you call this monster. My latest search resulted in an appointment with a cardiologist who was needed to look at some cardiac test results. Looking at his profile I noticed that his site stated that he specialized in autonomic nervous system disfunction. This epiphany made me realize it could be a cardiologist, endocrinologist, hematologist…as long as they were interested in studying the Autonomic Nervous System. Hopefully it is a hit and I will be able to tell you all how to find a doctor to treat the cause and not the symptoms of RSD!
6. The final note for this post is about assistance. Many of us are struggling with finances to get treatment or medications. Jim Broatch from RSDSA provided me with a list of free or decreased/sliding scale payment.
Also look at the maker of your medications. For example pfizer and lily are companies that I know have programs for those who qualify where they provide all medications from their brand for free. I also always check online for discount cards and ask your doctor when you are at the appointment if they have any discount cards for your specific prescription. Specific meds that I can think of that have these generally are the brand name like gralise or the new extended release of topamax (ones that you have no generic option). Don’t be afraid or ashamed to ask for help or ask your doctor for resources. The worst case scenario is that he or she says they don’t know of any!
There are options, you just have to learn to think outside the box!