CRPS Warriors Are Not Pretending
Written by Judi Soderberg for the RSDSA blog.
How and when did you develop CRPS/RSD?
For 25 years I had a shoulder issue that doctors diagnosed as Thoracic Outlet Syndrome. I tried very hard to work with that and just let it go, but the pain increased over the years. So when a vascular surgeon told me it could be corrected with surgery, I was all for it. Of course he did not warn me about the consequences of such surgery, namely CRPS.
He removed the first rib, the anterior and middle scalene muscles, and low and behold, found my brachial plexus bundle was twisted. Normally it has nerves on one side, artery on the other, vein on top. Mine was twisted so the nerves all sat at the top, so when he removed the anterior and middle scalene muscles, he basically removed all the protection the nerves had, and from there, scar tissue was formed which rubs continuously against those exposed nerves. This created injury to most of the nerves that radiate from the brachial from the neck on down to the fingertips, with the nerves to the clavicle involved as well.
When I went back to him in severe pain, he decided releasing the pectoralis minor muscle in two places would relieve the pressure on the ulnar nerve. This just gave me more scar tissue to rub against the ulnar nerve constantly as well. This happened in December of 2008 and February of 2009. The pain has been progressive ever since. And of course, the doctor left his practice here and moved out of state so he could not be found.
What has daily life been like since your diagnosis?
I finally had to give in and go on disability in 2014. My life has been a regimen of pain medications and pain. My house has fallen apart because I cannot clean like I used to. Travel has become difficult due to the pressure on an airplane. Driving has become increasingly difficult since I drive more with my right hand than my left, and my right side, from neck to fingertips, has become fairly useless, movement of any kind causing excruciating pain so anything I do is limited in scope.
What is one thing you wish those without CRPS/RSD could understand?
I am not pretending. You may not be able to see it (unless you are in my company for a long time and can watch as my tough guy exterior crumbles), but it is very real, very debilitating, and not something I can do anything about. I try to give people a little taste of what I am feeling by having them press that indentation between your neck and your clavicle, press hard, and they will hit the brachial plexus and get a zing from it. Multiply that zing by a thousand, and maybe you can almost know. But either be understanding and help me out now and again, or go away, because it is hard enough to deal with pain all the time without having to also deal with the prejudices of people who do not suffer this kind of pain. Do not look at me like I am a heroin addict when you notice the amount of pain medications I am on. I wish I could get high from them, but they barely even touch the pain. So, do not be so judgmental.
What advice would you give to newly diagnosed Warriors?
If the injury is new, do the physical therapy. There are methods out there to help reduce some of the pain. And if the injury is new, it is possible to build up the muscles that protect the area so you can minimize the pain… at least for awhile. And find a good pain clinic. These days pain management doctors are terrified to give out medications that actually make a difference, so try to find one that specializes in injury and CRPS. Look out for the ones that specialize in Fibromyalgia. They tend to not take you seriously and they do not recognize the difference between the two disorders.
What advice would you give to Warriors who have had CRPS/RSD for many years?
Find something you love to do that does not cause you too much pain and takes up hours in the day so you can enjoy life. I found that I am a pretty darn good developmental and line editor for fiction, particularly Fantasy/Urban Fantasy and PNR books. I have many authors that use my abilities and I am loving every minute of it. Particularly when a book comes out that I worked on that gets great reviews. It is a new love in the business world. I am creating a small business that I will make a minimal amount of money doing, and I will be loving every minute of it. That is what you need to do to take your mind off the pain. And use Voltaren! It is a lifesaver when the muscles get so tight they cause extra pain by pressing on the nerves.
What activities or treatments have helped you find temporary or long term relief?
Again, Voltaren. I will scream that gel from the rooftops if I could just to get pain sufferers to try it. Activities, well, outside of a hobby you like that will not kill you with the pain is great, and I read, incessantly. Non-stop. Takes my mind way far away from my own issues.
Anything else you would like to add?
Living with constant nine on a 1-10 scale pain is hard enough. The government interfering with the pain medicine regimen I have been on for over 20 years (some from the 10 before the surgeries, some from the 11 since the surgeries) just makes things worse. The fear is overwhelming that my doctors will start being forced to follow the ridiculous reductions of opioids that the DEA is pushing on the pharmas that distribute them. They should just be working on the street drugs that are causing all this insanity.
I am terrified of the amount of suicides that will follow any serious reduction in availability and restrictions on distributing prescriptions. People in serious chronic pain will see no alternative but to end the pain in the only way available to them: suicide. I am just trying to stay strong and hope my doctors (who are wonderful, by the way) will never completely bow down to the horrid restrictions that the government is attempting to impose on the doctors. Because, without my meds, I do not know what I would do. I know getting out of bed would be more than I could handle. Sidebar: I cannot sleep in a bed anymore, which means I no longer sleep with my husband. I have to sleep on a recliner, and even that is beginning to cause serious issues. I only sleep an hour or two tops at a time, which means I am sleep deprived all the time. That is not the best frame of mind to be in should my doctors change their policy.
Please consider making a donation to RSDSA today!
Mine’s been going since 01/17/1997.Resulted from a botched torn ankle peroneal tendon surgery & too tight a cast they figure. The doc took off 2 or 3 days after my surgery. Walked for 6 1/2 years with Fentanyl patch & loved that freedom of being burning pain-free! BUT doc retired & nobody wants to even prescribe oxy. Doesn’t work like it used to as the pharmas have “watered” it down to prevent as many people from becoming addicted. What a joke! Nearly every one who became addicted in that SINGLE study used to stop opioid use were addict BEFORE the study. Church & my 2 sons keep me from suicide. Couldn’t do it to my sons as their stepfather died via opioid suicide OD.
We’re so sorry to hear all of this, Fay. We are happy to hear your family and your faith are keeping you going.