Changing Course

I am changing course tonight to focus on what I am hearing from others, particularly on Facebook which has a RSDSA page for RSD sufferers to visit and chat with other sufferers.

First and foremost, you must have a great doctor who completely accepts, understands and manages your RSD. I have to say that a general practitioner is not going to be that doctor. This needs to be a pain management specialist or a rheumatologist or both. Check with your insurance about the pain management specialists in your area and only consider those who sub-specialize in auto-immune disorders. Not all pain management doctors are alike. Some specialize in work-related injury cases, some specialize in chiropractic medicine and then there are those who specialize in auto-immune disorders, pediatrics, etc. Treat your RSD like you would if you were diagnosed with any other condition, whether it is diabetes, cancer, ulcers, hearing loss, etc. You wouldn’t go to an ENT for diabetes treatment no more than you would go to an oncologist for an ulcer. If you go to the right doctor for your RSD, I promise you it will change your life for the better. You don’t want to fight with your doctor about what is happening with your own body.

Second, accept the fact that indeed RSD is an auto-immune disorder. Many, many people who have RSD either already know they have another auto-immune disorder or will be diagnosed with one later on. Before I was diagnosed with RSD, I had already been diagnosed with psoriasis and poly-cystic ovary disease. Since the RSD diagnosis, I have also been diagnosed with Fibromyalgia. Because my mother has PsA (Psoriatic Arthritis), apparently I have a 50% chance of also having it. Can I get my insurance to pay for the diagnostic test? No. Now that I have applied for permanent disability, I am wondering if SSA will push for that test to be done. After all, it would be nice to know if I have another auto-immune disorder that is also a nasty, destructive syndrome.

Third, please get a medical alert bracelet or necklace. I have one and it is always a good idea for anyone who is diagnosed with an illness to get one. If something happens to you and an EMT sees that alert, it will give him/her a “leg up” of knowing how to treat you, move you and what might be wrong with you.

Fourth, make a list of medications you take and put it in your wallet. Again, when you have the alert bracelet, the EMT will either call the medical alert company to see if you listed meds with them or will look for other clues on you or your purse/wallet. I have given my husband, brother and my parents the same list. In fact, I need to update my own list so this is reminding me to do so.

Fifth, read about RSD. It is so difficult to find information because so little has been written about it. I have one book that I consider my “RSD Bible” and it called Living with RSDS (Your Guide to Coping with Reflex Sympathetic Dystrophy Syndrome). It is written by Linda Lang and Peter Moskovitz, MD. My mom ordered it for me through Borders. On the cover, there is this quote “Clearly the most readable, comprehensive, and up-to-date book on RSDS that I have seen.” This quote is made by Paul R. Charlesworth, President of the RSDSA. I will admit that I haven’t read all of it because I find it difficult to read (aka depressing). BUT, it covers everything from the patient’s point of view (Linda’s) with the clinical knowledge of the syndrome that is out there today (Peter’s). I told my doctor about the book and asked her to please read it.

And, lastly, have a network of people who you can rely on. It doesn’t have to be a large group of people, but they need to be the types of people who will listen to you without judgment and help lift you out of the depression pit when you fall into it. That was why I started this blog……I wanted other RSD patients to know that you are not alone, that I “get you” and that if I put all the highs and lows of my own experience out there, then you know I’m being candid and honest. Rely on that “inner voice” that tells you that this person is not in my corner or I need to change doctors or I need to change or add medications because I am not getting the relief I need. You have to be your strongest advocate because, frankly, if you aren’t, who will be? If I listened to my irritated orthopedist, I wouldn’t be with Dr. Elizabeth today. It was my “inner voice” and the support of my parents, husband and a few close friends that kept saying “something is wrong” and gave me the momentum to continue to get answers to my problem. Thank God for them.

So I will return to my normal “blog” tomorrow, but I just felt compelled to stop telling just my own story and “address” some of the comments, complaints and concerns that I kept seeing on the RSDS Facebook page. So today’s blog is dedicated to all of you and I hope this helps.