“OhMyNerves” is a Resource Center and Gathering Place concerning Reflex Sympathetic Dystrophy or Chronic Regional Pain Syndrome for everyone affected by this horrible disease. Please leave comments when you can or send us an email at email@example.com if you have advice, stories, tips or any information you feel will help our cause 🙂
Until recently I never thought twice about pain unless I was experiencing it and even then once it was gone, I forgot. I knew my brother was having pain but until he was diagnosed and labled (which I immediately googled) I had no idea what a huge deal it is to a very large and growing group of humans. To be honest, after hundreds of hours researching the subject of chronic pain, I feel overwhelmed and it’s like I’m just scratching the surface. What I do know however, is that knowledge is power and there are many, many of you searching for answers – for some relief. I definitely know – My family is not alone. I hope the information I share, websites I link and treatment information I run across on my research journey benefits you in some way. If the experts can’t help us, we can at least try to be our own expert. I won’t wait for our overworked Doctors to find time to help my brother. We will get control of this roller coaster of suffering – one hill at a time.
The purpose of this blog is to keep your life and sanity ahead of the pain. If you are still reading and searching for answers you haven’t given up. Also, I believe that support is important when you are suffering and feeling alone. I hope you feel supported knowing there are others like me searching with you. My brother is living a pain filled, anxiety ridden, depressing, drugged up existence. He works really hard to stay connected with this family and the obligations that come with being a great Dad and Husband. He’s been reading and researching much more than I have – my purpose with this blog to help him and you make some sense of it all and find relief from the hell of chronic pain.
This journey into pain begins with my very active life loving brother. He has just been “diagnosed” at 36 with Complex Regional Pain Syndrome. He has had to give up a job he loved, a fun filled parenting style with his two little girls and the comfort of knowing he was contributing equally to the fulfilling life he was creating with his best friend and wife.
It all started when some old hardware from a previous ankle operation started to bother my brother. The Orthopedist decided the hardware should come out. My 36 year old brother Scott didn’t think twice about having the operation because this meant the annoying pain he had been bothered by would be gone very soon. He would be back to leading his active life of being a father and provider for his family. Little did he know his journey into a life of devastating pain and suffering was just beginning.
During the painful day surgery the Doctor “dug” the hardware out of the bone and plopped it in his hand to take home as a souvenir. Scott hobbled out of the hospital, in pain but relieved to know that things were going to get better. Days went by but the old adage of time heals all wounds didn’t seem to apply here. The Surgeon then said there is no reason he could see to cause the pain. He then decided that he had to have another look inside his ankle to look for a reason. There was a calcium buildup on the bone so the bone was ground down and he also found what he said was a bundle of nerves caught up in the old scare tissue. Scott came out of this surgery with alot of hope and began his recuperation. His pain was getting worse and now instead of a nagging pain it was starting to become agonizing. When Scott could get in touch with the Orthopedic Surgeon, he was told to “give it some more time”. He was also told that as far as the workings of the ankle there was no reason for the pain and that after such a long time off work that it was pretty much in his head. Scott was then put on a list to get into a pain clinic and told to wait for a call. . In the mean time thankfully, his general practitioner was helping my brother with pain relief through tyelonol 3 & Hydromorphone. Over the next few months he would take more and more only to find they couldn’t keep up with the knawing pain.
Soon my Brother was noticing other strange symptoms. Discoloration of the skin on his ankle. Weeping sweat like moisture beading through the skin. Overly sensitive skin – no more socks and shoes. The side of his work boot felt like a hot poker. Soon he wasn’t working. Spending most of his time waiting for a Doctor to help him. After 10 months of waiting he was told he was “LUCKY” and there was a cancellation and he could get into the pain clinic. There he met the most amazing staff ever and they actually made him feel great. Finally he had talked to somebody in the medical profession that believed him, as most people doubt the pain. After only 1 hr with the pain doctor and going over his symptoms he was given some hope with an actual cause for his pain.
Since his diagnosis, we have learned that the first 3 months of symptoms for CRPS is critical for treatment. If nothing is done in those first 3 critical months – a remission is still possible but complete relief is not probable. He most likely will be in pain most of his life. But how much pain? And what quality of life?
Now 21 months since Scott’s accident and his CRPS has progressed from his foot to his entire leg. He has had 3 nerve blocks in six weeks and no relief. Since then he has had problems from the small of his back down his leg and now the doctors think he now has “‘Sciatica” or it mas be his CRPS progessing farther. Now comes the cat scans and bone scans to find out how far his disease has gone. Daily does of PMS-Gabapentin 3600MG, Hydromorph Contin 12MG amd Hydromorphone 3Mg and this only brings the pain down but does not stop it. We have no idea what the prognosis is or will be. All we do know is there has to be more research into this disease and hopefully everyone suffering this horiible disease will finally get the relief and enjoyment from life they deserve.