Living with RSD

In 2000, I got a flu shot for my job. I have a college education and worked for the Mental Health program in our county for years. Immediately following the flu shot, I had the worst case of the flu I ever had. Within two days I could not raise my right arm. My scapula winged and I had horrible pain the shoulder and scapula area near the spine.

My neurologist diagnosed the RSD within months of the shot. The problem is every doctor I see thinks the answer are their new drugs. Neurotin started at low doses and then moved up not only wrought my daily life with constant pain untreated but also introduced tremors and terrible memory loss. I would drive down the road and not know where I was going. Within months I could not drive any longer because the tremors were so bad and the pain was uncontrollable.

Pain management was unsuccessful because I hear this all the time ‘we can not give opiats to cronic pain suffers because they will become addicted.’ Now seven years later, I have had physical therapy I have seen so many doctors its scary, and I live in cronic pain. I have had nights where it is almost impossible not to put a sharp object in my shoulder in hopes doctors will act or I will get lucky and kill the damn shoulder so that it doesnt hurt any longer. The swelling and sensitivity are unbearable.

A recent MRI and new pain management specialist I saw last week in Cooperstown, NY agreed again with the diagnosis and told me of damage now to the shoulder. I had long thoracic nerve paralysis at the time of the flu shot however now, the clavicle joint is swollen, there are two rotor cuff tears and the clavicle is no longer concretely attached to the scapula. It is a nightmare as I waited seven months to see this doctor with prayers every night that he could help me. When I got there he told me I was one of a very few people to have RSD in my shoulder and scapula area. “It is quite rare, but you definately have it.” No kidding ya think? The bad news is he can not give me a very helpful shot because for the shoulder I would need to get it repeatedly in the neck and it is a 80% chance of injury. He was a very caring doctor but I literally left there feeling quite hopeless. He offered up a new drug, lyrica. Great, added to my current cocktail of non working drugs, three weeks later it is not doing anything. He told me I would know if it works within two weeks.

I am incredibly angry with the health system in my area. I have travelled great distances to see doctors in the last seven years to hear the same thing: “You have a nasty case of RSD, and unfortunately we are unable to treat you.” I have something to say to all medical professionals that are treating RSD patients. Could you please take your great College Educations and your super higher thinking brains and do the math in RSD???? Heres a clue: You are worried about RSD patients getting addicted to meds so you leave them in pain for years and keep sucking their insurance dry as you send them from one doctor to another and the primary care physicain keeps prescribing the latest drug of miracle that really does not work, well let me clue you in…If the patient is living in cronic pain 24/7 they have no quality of life. A drug addiction is the least of their worries. When we, the people living in cronic pain are taking seven and eight drugs many times a day, using lidocaine pads and tens units and still have NO LIFE because we cant sleep and we cant do anything but cry and pray for God to end our lives quickly so that it stops, YOU HAVE FAILED TO DO YOUR JOB! If you have an RSD patient, treat their damn pain. Do not let them go years in pain and think your helping them, YOUR NOT, you are the reason people are living as I am.

I am a very angry person who has four children and is trying to live with the help of my beautiful family, but it is hard. Let me give you the rundown of the last 24 hours of my life: I was up all night, taking lyrica on top of other drugs, and praying to God that I could sleep or get some kind of relief for sleep. Come four forty five I feel asleep with the tens unit on. My daughter gets up for school at five a.m. and woke me. She is thirteen. The pain was instant with consciousness and my four children had to watch me cry as I tried to function getting them ready for school. My daughter took the phone to another room and called my father. After they left for school, I assured them I was ok, but still did not know about the phone call.

My father comes and I am lying on my couch in tears, trying to make it stop by holding my breath in spurts. He hands me two pills, Hydrocodone, he got from a friend. He says to me: just take these. He told me, I can get them and keep you comfortable and in the mean time we are going to get you a lawyer to help your doctor treat your pain.

LISTEN UP PEOPLE : for seven years I have been living in horrible pain. My father a good man and a private business owner who has never been a burden to society, raised six kids and was the powerful leader in my life, actually got drugs for me for my pain illegally. What would cause him to do this? I will tell you. A weekly visit at least to the ER where they pump you with something like dilotid. Great pain relief, I cry because I cant believe the pain has actually stopped.

I am so happy for what, for a few hours of pain relief. My income, savings, 401k and everything has been depleted. I applied for Social Security and my doctors all were shocked they turned me down. Get a lawyer they say, well do you know how hard it is just to get to a doctors office? I have school functions they have set up by phone so I can see them. I watch my children graduate and whatever I can on the local channel they broadcast from and why?? Because I have RSD and nobody knows how to treat it.

I feel hopeless. I feel deserted, and this morning was a biggy. Watching my father trying to help me take medication that I shouldnt be taking, that is not prescribed for me, for a few hours of pain, is about all I can stand. I have had enough of doctors who can diagnose but do not know how to treat. It is sad, pathetic, and extremely depleteing of my emotional state.

Shame on every single one of the health professionals who do not treat their patients with RSD appropriately. You are ruining peoples lives. I am a vaible person, I was healthy, happy and secure. Your inaction has taken that from me. I beg you people to treat your patients RSD, you could be saving their lives.