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Tuesday, February 1, 2011

Living Behind a Mask

At any given time we all adorn a mask. For some, it is to hide a deep secreted vice. Some it is to shroud a part of themselves they are unhappy with, or to become someone they are not. My mask is quite different from those altogether. I suppose a little background is in order before I reveal what is the cause of my masquerade.

About a year ago after a hard day of refitting a new engine in a relatively new VW GTI I noticed a feint dull pain in my hands. It was nothing serious, it was the kind of pain you got as a child after writing 100 sentences out on paper for disobeying the teacher. Blaming this on being a mechanic and overworking myself as I often do, I shoved it to the back of my mind. The pain persisted but was far from being chronic so it was manageable. With much persuasion from my wife I decided to at least get it checked out by my doctor. A fifty dollar copay and two x-rays later he prescribed a steroid pack and sent me on my way. I knew just from the way he described the treatment that it was fairly common. He recited the risks and the treatment plan of my medicine as if it was the opening line of a telemarketers spiel. I took the pills I rested I got somewhat better.

However this dull ache returned and evolved into a serious pain in my hands radiating up to my forearm, only this time it was chronic. Many people who have not suffered chronic pain simply cannot "Know what I am going through." That phrase gets tossed about in similar ways to "Thank heaven" and those who are not afflicted by chronic pain have absolutely no idea what I am going through. Every decision I made to use my hands was a weighing out of the benefits of doing the action, to the consequences of those actions in terms of pain. The tricks that chronic pain plays on the mind are nearly as bad as the pain itself. The most dreadful thought of chronic pain is knowing that nothing you can do will take away the pain, and it is this that amplifies what pain is already present.

The only thing that alleviated the mental part of the equation was self-diagnosis. I was obsessed with symptom checking and the reading of articles of possible causes. Everything from Lupus to Lyme disease raced through my head. "Is it autoimmune?" "Could it be nerve related?" "Could it be related to a botched lumbar puncture?" The ladder question is referring to a procedure that many mothers are familiar with. A long needle is inserted between two vertebrae with a goal of puncturing a disc of fluid to test for various afflictions. It is similar to an epidural in practice, the way it differs in method is it is extracting something as opposed to injecting something. Perhaps my neurologist was having an off day because he proceeded to stab me eleven times into my spine in attempts to withdraw fluid. Each time like an electric wire that seemed to be infinitely hot, in and out, in and out. It took everything in me not to scream out in pain. At times I knew this was the cause for my pain, but now I know that was my brain drawing conclusions based on a traumatic experience.

It had been six months that I lived in chronic pain until I could see a doctor. The 90 day waiting period for insurance benefits to apply when starting a new job is the cause for the wait. Fortunately the doctor I saw was sympathetic to my pain, which oddly enough is rare in my experience. Doctors are apprehensive to start a treatment for an otherwise healthy 25 year old man who complains of pain. After his recommended full blood workup was performed and interpreted he referred me to a rheumatologist. This spawned a flood of future doctor visits and failed hypothesis for the cause of my pain. I saw neurologists, hand surgeons, orthopedic doctors, and diagnosticians. I was told everything from therapy to my diet was the cause of my pain. The most troubling pseudo-diagnosis came from a Vanderbilt neurologist who diagnosed me with depression. When asked if perhaps chronic pain was the cause for my blues this doctor was convinced that my depression was the cause for my specific, localized pain. I think doctors lose sight of the weight that saying something like that has on a pain sufferer. Most of the time I waited weeks to see these doctors, and each time I held the hope that just maybe one of them could help. Then, being told something like what I was told absolutely devastated me.

At least I had Dr. Meyer. He was my general practitioner and although limited in scope of assistance he could provide, he was the spark that started my diagnosis. He took it upon himself to speak to a second rheumatologist for a second go around with diagnosing. This time around my Prednisone regiment worked, and for the fist time in a year I had glimpses of what it was like to not wear my mask. The mask I wore was to cover up the severe pain I had been experiencing. When I told people that I had chronic pain most didn't even believe me. I was so good at hiding it I sometimes doubted the pain myself. I had to, I was not letting this consume me. I did not don my mask because I wanted to, I did it because I had to.

More tests and treatments later I have now (as of last week) arrived at my diagnosis: psoriatic arthritis. An especially painful autoimmune disorder, and in my case it is in advanced stages. The weight of uncertainty being lifted is enough to give me hope that one day I will live without without symptoms. New medicine that science has provided will allow me to be almost 80% pain free, and actually help fight the damage already done. I look forward to the day I can take off my mask and live life.


  1. Daniel,

    I am so very sorry to hear that you have to live with such pain... I would say that I would pray for you but we all know how helpful that would be! Please keep us posted, I really hope you can soon get 100% relief instead of just 80%. Oh and I commend you for not punching the doctor in the face who pricked you 11 times... yikes! I had an epidural with my son and one prick was enough! Please take care!


    1. It was surely one prick that meant you needed an epidural.

  2. Wow, that's terrible. I hope the meds get sorted out soon so they work all the time. I've heard that vitamin D is one of the things prescribed to help the pain - have they done that for you? (I'm sort of in the medical field and interested in health care) Cod liver oil is a fabulous way of getting enough vitamin D and a lot of people are low on it - so if that's something they suggest cod liver oil a really cheap and bioavailable way to get back to a regular level.

    Best wishes.

  3. Yeah. I've been on vitamin D before. For some reason I've had dangerously low levels of it. However the only thing that helps with the pain is a rather large dose of prednisone and a narcotic pain killer (pictured in the post). The new medicine is Humera and its a biological medicine I'll have to inject. This is assuming my insurance will pick up the cost of the drug. If not then that med is not an option as its over 1000.00 a dose.

  4. I sure hope your insurance will cover it then, that's an astonishingly high price.

    That's cool that they have prescribed vitamin D before. I hate to push tips on people who are sick and already doing everything possible to figure out ways to recover, so I hope it doesn't offend you that I did suggest it. It's just that after discovering a while ago (fascinating, especially the founder's book on Gutenberg) and hearing so much about vitamin D's importance, I ended up going through a suicidal depression and pulling out through cod liver oil - it was dramatically fast. But I also have heard many stories about people with chronic diseases finding it really helps, so I tend to suggest it as just a possibility, risking bothering someone rather than not telling them something that might be a little or even big help.

    All that to say, good luck :D

  5. As a sufferer of chronic pain for years I'm glad you've found something that is starting to work for you. I totally get hating people telling you they understand. People interpret pain impulses differently so to be literal they couldn't possibly understand. They can perhaps imagine and certainly empathise so why not stop the prerecorded clichés and word it that way? I've found that after years of dealing with doctors you have to take their word extremely carefully! They learn from textbooks and often don't have answers for cases they've not personally dealt with yet because of their educations we accept their opinions, often at the expense of better ones. So I'm glad your GP got you a second opinion. At least you're not like me and decided that because you were born with your condition you knew more than the new guy and would ignore him. That isn't always good either. lol

  6. Daniel- glad to see that you have found a diagnosis and some relief. It is very frustrating when doctors jump to conclusions and say things to imply that the pain is only "in your head". I had chronic neck pain for a while and it made everything in life more difficult.

    Best wishes, Jim

  7. Hey there, Thought i'd comment to tell you a little about my story having also recently been diagnosed with PA .... I'm a 33 year old woman....8 months ago the pain i had started off in one knee, then within a couple of weeks spread to the other, the pain gradually became worse and before i new it, it spread to both my heels then my fingers, wrists, elbows and shoulders, all of this within 3 months...severe pain that literally changed my being....luckily i had very understanding GP's that after tring me with various forms of pain relief began to prescribe me morphine along with epilepsy drug that works very well for nerve pain that causes an almighty pain on top of the joint pain....and also the wonderful prednisolone...the second time i saw my rheumatologist he admitted me into hospital 3 days after seeing him where i spent a few days having various tests which brought them to the conclusion of psoriatic arthritis... i personally do not have skin psoriasis but my late mother did and also her sisters so taking that into acount along with the plantar fascitis i suffer in my heels which is another marker then brings the consultant and registrar to this....its been 3 weeks since i was discharged and since then i have had a shot of kenalog which has been great, supressing around 70% of the symptoms...i am awaiting my treatment plan of methotrexate with another consultation. This is something ive learned that unless you have or are going through some similar or same thing , then you cant understand what we go through on a daily basis...a nurse said to me a few months ago...please dont forget who you are...remember all the things you enjoy and dont forget your name...and dont let the doctors see you as a sore arm or leg whatever it is...dont become a statistic....let the doctors see just how it is affecting you....For a nurse to say that makes me think she knows what im going through...simple words to one person...but to someone like me...and you Daniel...those words seem more profound. Its hard work, i also have 3 young girls to look after which isnt easy ..especially when they see the effect of PA when its very active, it worrys them. Its hard to keep smiling at times but im accepting it now, and apreciating the good days where i can walk without pain and i am sure you are the same...Good luck on your road...i know its a long one...itll be bumpy at times and dark and lonely....thats how i see mine and thats how its been but you gotta keep moving forward ! Take Care from one PA to the other !!!