If you look up the word tangible in the online “Merriam-Webster” dictionary, the first thing you will see is the following:
: easily seen or recognized
: able to be touched or felt
In the world of chronic pain when we talk about tangible conditions, we are generally referring to those issues that can be seen on scans and images or be detected by other testing. In other words things that can be seen and pointed to. So many of us that have chronic pain…. especially Fibromyalgia…. spend a great deal of time “proving ourselves” as our pain is word of mouth as well as muscle knots that can often be felt. Sometimes, but not always, our blood work is a little “off” but nothing earth shattering.
In my situation I have both tangible issues and issues that cannot be seen by scans. However, it seems as of late, my tangible issues have overtaken my Fibromyalgia in the great “race” for which conditions are wreaking the most havoc at any given moment. Hands down, my neck is the number one culprit.In the last year and a half, three scans: A regular X ray, an MRI and a CAT Scan all revealed the following: I have 2 disc herniations, degenerative disc disease, osteo-arthritis, severe kyphosis (a reverse curve aka a ‘hump neck’), numerous bone spurs and the worst of all of these, severe stenosis on every level of the C-Spine as well as T-1. I was sent to one of the two best orthopedic doctors in the area. He said he would not touch my neck, but sent me to the other one (who was in a different practice; a rival), and this Doctor agreed to take my case. However, I was too afraid to have the surgery a year ago. I still am but fear that I have declined to a point to where I am going to be left with no choice soon.
Nearly all of the time I have little to no feeling in both my hands. Most of the time my legs and feet are at best ‘pins and needles’. The scariest part comes when my right foot ‘contorts’ or goes into a painful and uncontrollable ‘Charley Horse’ like spasm that I have to just ride out. Paul comes and rubs my foot as it contorts without anything I can do but just let it go. Sometimes the spasm is done inside one minute, other times it goes for over five minutes. The major downside to this spasm is I fall. And when I say fall, I mean I am down like a 5 ft 8 in rag-doll. I have fallen in all kinds of places but since I am home most of the time, I usually am able to catch my falls someplace within my own home. A few of the falls have been hard, including the pavement and cement stairs. Paul has witnessed at least one fall first hand and as he said, it scared him senseless. I feel like the “Elephant Man” much of the time. If you are reading this and you remember that movie (I am showing my age), The Elephant Man or Joseph Merrick of the United Kingdom could not sleep laying down because the weight of his head would suffocate him. Now I am blessed not to have such a tragic condition as Mr. Merrick, God rest his soul, however, I do get the not being able to lay down scenario. I have not slept laying down in a bed all eight hours of a night since 2011. The stenosis in my neck causes such an enormous feeling or pressure on my head that I would end up with a raging headache if I dare try to sleep laying down. There is no way around it. It just sucks. There is one thing I have been assured of: It will only get worse. I also have arthritis throughout my lower back. This has been detected in the last few months. The one area I never actually had a lot of problems was lower back. The key word being, was. Now it is sore most all of the time, and at its worse if I have been on my feet for any length of time….. even ten minutes. Yet I still fight for my disability after three years (stay tuned for a later post on the subject of how miserable and broken our disability system really is). I still put on my ‘happy, happy’ game face as to not dare be a “Debbie Downer” for all the world to see. Dare I actually open up and be honest about my life and the struggles face on a day to day basis? That is what this little spot on the internet is for as well as the occasional ‘bad day’ on Facebook.
This is one of 100’s of views of my MRI, a ‘soft tissue’, very detailed ‘magnetic view’ of my cervical spine. One does not have to be a health care professional to see about 1/2 way up it looks like a multi-car pile up or hot mess. The pressing on the spinal chord is clearly visible. This in turn compresses all signals and feelings to all other areas of the body.
These are four of 100’s of ‘slices’ from my CAT Scan of my Cervical Spine; a very extensive nuclear image which is like an x-ray, except much more detailed. Again, like the MRI, one does not have to be a health care professional to see this is one messed up neck. Very visible here is the severe kyphosis (reverse curve); the *worse* the first orthopedic Doctor (who is considered one of the best in the area) said he has ever seen. He refused my case because my neck is so bad. Also visible is one of many bone spurs. This is a very wicked one, hooking over about midway. It is not hard to miss. The degeneration is visible and one of the herniation’s is visible (especially in the lower left picture, C1/ C2) because that actually herniated so long ago, those two vertebrae fused themselves together. They are at the top and look like a little ‘hat’ tipping to the side.
Fibromyalgia on its own is a struggle enough. Along with pain and fatigue as well as the array of collateral damage that bombards our body, many of us have tangible issues to deal with such as arthritis, disc herniations, stenosis, etc. It is like piling more on an already weak structure. Pretty soon it gives way , cannot bear anymore and collapses. The only ‘up side’ to having tangible medical conditions is that no one can accuse you of ‘making up’ your condition. If they dare to all you have to do is pull out your scan and report and point them to your troubled spots. Pictures do not lie. I was tempted, upon receiving the radiologist reports, to have the edges of the report gold tilted and special delivered to all those in my life who accused me of ’embellishing’ the truth of my pain. Then I realized Karma would take care of all that and it was not worth my time or concern. Until next time, K.