Be your Own Advocate- Don’t Give Up!

This is an article that I found online….I copied it for you here & I hope it helps people understand What those of Us with RSD/CRPS May go through! I am one of the “lucky” ones because this hasn’t happened to me much at all! I had an Immunologist say to me “sooo what’s RDS?”….My husband & I looked at each other…got up & walked out! I had one Rheumatologist say to me “well, I cannot confirm or deny your other Dr’s diagnosis of CRPSII, Because I see no evidence of it today!”…. Well he must’ve been blind because I could see and feel it AND I showed him photos of flares..Again we walked out, but not without telling him first, that I was not there to ask for confirmation of my full body RSD/CRPS! I had confirmation from 3 Dr’s already at that point! Everyone else, as far as medical professionals, have been kind and knowledgeable with regards to my illness! But as my friend and co-CRPS’er, Barby Ingle writes in her book “The Pain Code”..”Healing starts from within”….she talks of hope being a big part of dealing with pain issues! Here is the article that I found at

Complex Regional Pain Syndrome, CRPS has been called the invisible disease – and for a few very good reasons. Although there are some who are more severely debilitated by this disorder, there are many patients who suffer horrific, agonizing pain each and every day without any obvious outward sign of disability. There may be no wheelchairs or crutches, no big casts or bloody gashes to define the pain for the untrained eye which may otherwise easily miss a slight limp or a red swollen arm resting snugly against a protective body. In addition, many with CRPS often manage to function on a daily basis by going to school, work and participating in social outings whenever possible; all with a level of heightened pain that would knock the rest of us off our feet – helpless in bed. They actually smile when with a friend and carry on normal conversation as if nothing is wrong. The only way I can explain this is to say that when living with this level of excruciating pain twenty-four hours a day, every day, months after month, year after year the human spirit prevails. I watched my son find ways try to continue functioning, if at all humanly possible, with friendships and social outings, even school. He desperately wanted his life back and he learned that it was advantageous to add normalcy to his routine if he was able, despite having to cope with surviving this living hell.

It is possible then, to see someone suffering from this invisible disease walking down the street, attending school, smiling and talking with their friends and for you to think there is nothing wrong. It makes it even trickier with children, who have an even easier time smiling, having pleasant conversation or having fun with their friends while in a state of long term chronic and horrendous pain. Physicians are so stuck on the universal Pain Scale (designed for the adult population) which correlates terrible pain with grimacing, crying, screaming and sadness…that when a child walks into their office, and carries on a pleasant conversation – perhaps even sharing a smile or two; there is no way they can believe that this same child is suffering from intractable pain at 7 out of 10 on a pain scale. This is obviously a malingerer and very quickly a diagnosis is made, “psychosomatic!”

Lastly, it is important to note that CRPS is one of the few illnesses for which there is virtually no reliable diagnostic test. Complex Regional Pain Syndrome often starts from a minor injury or surgery, but that injury is usually long gone and well healed by the time the CRPS has set in. With Complex Regional Pain Syndrome, EMG’s, MRI’s, CAT scans, and X-rays are typically all negative. (Occasionally bone scans will reveal decreased bone density and this can help with a diagnosis). Because of this many physicians, with limited knowledge about CRPS, assume there is nothing physically wrong with the patient because testing keeps coming back negative. It is very common, at this point, for doctors to begin wondering if there is a psychosomatic component to the pain.

A couple of things come to mind when I think about this dilemma. First of all there is the obvious need for more awareness about Complex Regional Pain Syndrome amongst health care professionals and physicians world wide so that the signs and symptoms of this devastating disease can be more easily recognized. Second, although I understand how a physician must always keep his or her mind open to the possibility of psychological issues interfering when making an accurate diagnosis, I also feel strongly that it should never be assumed that a patient’s pain is not real. If a person is telling you they are in pain… they are usually in pain. I would hope that physicians would begin with this premise, stick with this premise and believe in their patients unless proven otherwise – lack of diagnostic testing does not prove otherwise. Fortunately there are many wonderful doctors out there who will go to the ends of the earth to help their patients (we were fortunate to have found a couple and I am extremely grateful for their care), but there are also far too many who somehow feel that there is an epidemic of psychiatric issues amongst their patients and pain is most definitely just the secondary symptom. These physicians often place a psychiatric label on the patient before an evaluation is even complete, causing unnecessary increased stress and suffering on the patient and family; not to mention months sometimes years of precious lost time.

There is a term for this in the medical profession called “cubby holing”. Sometimes physicians fall into the trap of categorizing patients into groups and basically place them into pre-set “cubbies” with pre-determined judgments. When my son Devin was being evaluated by one particular pain specialist, he quickly placed Devin into a nice little “cubby”- a young teen who must have too much stress at school and home, most likely problems with friendships and siblings and a need for secondary gain. He even insinuated that my husband and I must be having marital problems which was causing additional stress. Thus, I had fallen into a “cubby” of my own. It floored me at the time, for Devin had two adoring siblings, loads of friends, no stress at school and two parents who love each other very much. No matter how many times I tried to tell the doctor this reality, he kept saying, “Wendy, this is what all moms say to me”. Troubling to say the least, but a great example of a doctor who used “cubby holing”, perhaps without realizing it, to make nice, tidy pre-determined judgement about my son and I, leading to his pre-determined conclusion that Devin’s pain was psychosomatic.

So what does one do about this situation? How do you avoid being cast from one physician to the next being told, “Your pain isn’t real…Its all in your head.” My best advice is to trust your instincts. You know yourself and your child better than any physician who is just meeting you or your child for the first time. Move on immediately and find a physician who will work with you and help you find the right treatment for you or your child’s CRPS. Don’t get sucked into staying with a physician or health care worker who does not believe in you. There are good physicians out there and there are people who can help.

If you are having a hard time locating a physician or program in your area contact the Reflex Sympathetic Dystrophy Syndrome Association, RSDSA. Parents with children with CRPS, I strongly encourage you to contact The Children’s Hospital of Philadelphia’s Amplified Muskuloskeletal Pain Syndrome (AMPS) Program run by Dr. David Sherry.