The anatomy of chronic pain – a personal journey through physical pain

Everyone has experienced pain at one time or another be it: physical, emotional or psychological pain, not a pleasant experience. What if you had to live with it day in and day out what would it do to you. There are all kinds of reasons people have to live with chronic pain, diseases like: cancer, fibromyalgia, MS, muscular dystrophy etc.

Doctors say there is an unsubstantiated relationship between chronic pain and the impairment to live our daily lives. I find this laughable. I am sure that people who suffer chronic pain would agree with me. There is a direct relationship between one’s impairment to carry on normal activities of daily life and the level of chronic pain a person suffers with.

I am writing this article in part as a cathartic experience to express to those around me how I feel and suffer so that perhaps they can understand my behaviour better. I also hope that my experience with pain is not an isolated feeling and that my expression of the experience might express the feelings of others who suffer. Helping people around us understand is really important to our self-esteem, I feel.

Some individuals are very lucky and have a concrete diagnosis of their condition and their medical practitioner works with them to manage their pain level so that they can function well in their environment. This may require multiple drugs and lots of trial and errors before the right combination can be found. It is not great when you feel high but have the pain under control and can function somewhat or don’t have the pain under control and function inadequately.

Here is the thing about pain. Everyone has a level they can tolerate once beyond this level a person might cry out or seek some kind of comfort from that pain whether it is medical or something else. When you live with that level of pain constantly where you are beyond your level of tolerance it is a constant drain of energy because you are always working to control it. It is a constant battle between you and the pain you feel and it is emotionally and physically draining. It makes you feel weak and fatigued. Much of the time you want to sleep because of the fatigue the pain causes however the pain itself prevents you from actually sleeping to get rest as the pain is constantly waking you or causing your body to move or contract to find comfort.

I have the unfortunate chronic pain that attacks my joints and muscles. It is like a giant massive toothache (a really bad one) all over my body. I am a pretty active person and I have always been one of those women that people look at and think that I am in really good shape and am younger than what I am. Part of the reason for this is because I work at keeping very physically fit and my weight down. I used to be a bodybuilder so I still have quite muscular arms and legs and now at over 50 I think it is incredibly important to work even harder at maintaining my muscles as this is how I will support my spine and keep my weight under control. So what you might wonder has this got to do with chronic pain – everything.

Unfortunately the pain I am experiencing everyday prevents me from doing things or if it doesn’t it takes so much energy to complete any task that completing one task a day is exhausting. The drugs I am on right now finally have diminished the pain to the point where I can function better but for sure I do feel high and sometimes worry I am going to pass out. The doctors and I will have to continue to work on this.

This chronic pain has rocked my self-esteem to my very core. The last time I saw the doctor I broke down crying because I essentially said I just couldn’t take the pain anymore. Not that I have thought about it, but I can certainly understand why people who are in constant chronic pain physically or emotionally, commit suicide because sometimes you just can’t get people to understand how much you need help. It is amazing when a medical practitioner sits across from you and says that your tests are normal and that there isn’t really anything wrong. They smile and you are supposed to be happy with that outcome. You know the pain is real. It isn’t in your head. It makes me a like I am going crazy when they say things like that, so I have come to the point of saying “OK that is fine but it doesn’t change the fact that I am in pain all the time so now what?”

Doctors I believe have the tendency to write women off especially when the complaints are pain and fatigue. An example of this is I have been suffering extreme fatigue, probably due in some part to pain, for at least the last five years yet the I have never really felt any doctor has taken me or it very seriously even when it was so great that I literally felt like I had been up for like 48 hours solid and had hit a wall and couldn’t keep my eyes open – that feeling you get when you are so jet lagged you are ready to fall down from fatigue. When my husband went in to get a check up the doctor asked if he was tired and he told him he can sleep anywhere which is true. The doctor immediately started investigating this. As long as I have known him he has been able to sleep anywhere but I do have to say that over the last few years he has seemed more tired than normal maybe I am putting extra stress on him? As it happened he does have some Vitamin D issues and haemoglobin issues. It was just interesting to me that a doctor jumped on the fact that he could sleep anywhere, a common trait, and I think if a woman had mentioned the same thing I don’t think it would have triggered the same response. I digress.

The pain can seem never ending, a vortex you are sucked into and can’t get out of. It can be emotionally all consuming just to keep it under control or deal with, so that you just can’t deal with anything else. I noticed that when I was at points like this my personality changed I became so short tempered and unable to tolerate the smallest deviation from my expectations. I am never short tempered with my dogs and I was even short with them never mind with my husband who bore the brunt of my discomfort.

I am sure people you know hate asking you how you are because if you are honest this could cause a diatribe response of all the problems you are having and feeling and they might wonder what they unleashed. Seriously though I know I am careful about who I talk with about how I feel but then this means certain key people hear about my condition all the time and I am sure it gets very old. I know it does for me. I used to wonder why with some of my older relatives they were so consumed with their health and when you asked after them that was really all you heard about, well, now I fully understand. When your life is consumed with dealing with a health issue that is what is foremost in your mind at all times and so that is what you talk about.

Social media has given people an outlet that allows for both information and a forum for discussing what is happening to you so you don’t feel alone in your struggle. I think this also helps to make the medical community more accountable. People can ask others about treatments and protocols to find out the best current medical/non medical practices that can help their condition. Sometimes you can suffer a symptom that you think is simply nutty, where maybe this time you have lost your mind, only to find out it is much more common than you think and lots of people have had the same thing happen, it just isn’t written up in the medical symptoms. The internet can sometimes be a curse however if people decide to start diagnosing themselves. It can lead to people believing they have something much worse than what they have so I think the internet information always needs to be approached with caution and verified in person by experts.

I fortunately have found a doctor(s) that I can work with who each deal with different aspects of my pain but are helping me manage it. Although they reside at the same hospital it seems that there is no team approach to patient care and each one sticks to their own expert field which can sometimes be a little frustrating but at least they all can see my records and history which adds some consistency which I haven’t had for a long time moving country to country. Right now things are going OK, the medications seem to be in the correct dosage so that I can function at a fairly normal level and not every day is consumed by pain. I feel lucky. Is it a zero on the pain scale as my neurologist would like it to be – no, but as one lady told me who suffered all her life from chronic headache/migraines she wouldn’t know what a zero felt like.

Barbara Lewis is a regular contributor for EL. She has just started a new job as a teacher at Rose Marie Academy we wish her well and hope that she will keep writing!