Sunday, May 23, 2010

A Little Confused

I have been a little confused lately and this post is likely to confuse you, so lets be confused together : )

Back in early 2007 I was diagnosed with non-effusive, seronegative inflammatory polyarthritis based on the onset of symptoms in mid 2006. Polyarthritis does not show up on diagnostic tests. This diagnosis according to my Rheumatologist was based on subtle clinical signs and an excellent response to a prednisolone (cortisone) trial which saw eighty percent improvement in joint pain and fatigue. The cortisone therapy trial was used by Rheumatologist to establish what treatments to consider regarding the long term management of my debilitating joint pain and was to be used for short term use only due to its potentially dangerous long term side effects.

Cortisone, taken orally; allowed me to live a half decent life. I was able to work between three and four short shifts a week. The pain relief I got from that drug was bliss! After taking the maximum dosage of these tablets for nearly a year, I started to develop mild side effects such as weight gain and acne.This meant that because I was now beginning to experience mild side effects, the likelihood of developing side effects that could harm my health because of the potential long term health risks associated with the drug was a much greater possibility. I really didn't care about gaining weight if it meant that the pain was more manageable. Squeezing into my clothes was totally worth it! However, I reluctantly stopped the trial following my Rheumatologist's order. Apparently I was very lucky to get away without side effects for as long as I did. People usually develop side effects within three months and I lasted almost twelve! Go me!

Stopping the cortisone therapy was extremely difficult. It's pretty addictive stuff. Throughout the trial I made several failed attempts to cut down the dosage only to be met with raging joint pain and overwhelming fatigue. Even to this day I'm still amazed at how I managed to stop it and somehow survive. On a bad pain day I wish that I could take a dose just to get me through the day. I still crave that pain relief.

Based on the overall results of this trial my Rheumatologist deemed it necessary for me to take disease modifying medication. I was prescribed plaquenil and methotrexate (which I will explain about in future posts). I have now been taking these medications for more than two and a half years for the treatment and management of polyarthritis. In regards to the cortisone treatment, these drugs just don't cut it. They don't even come close. They help control the pain to a much lesser degree and they certainly do not give me the quality of life that I long for. I've gone from working three to four short shifts, to barely managing two short shifts a week. This is the life that I have slowly and unwillingly grown accustomed to.

Initially when I was diagnosed with polyarthritis I had no idea what it meant and how it was going to affect my life. It wasn't properly explained and my Rheumatologist has never given me clear cut answers when I have asked. She told me that the arthritis that I have at the present does not have an identifiable source, so it was just a waiting and watching game to see what the joint pain decided to do next and because every diagnostic test came back clear it was assumed that there was no long term damage being done to my joints as a result of the pain. She even told me that at some point, although she couldn't say when, the joint pain would settle down and even disappear! Oh how grand that day will be! At the time, I was relieved to hear this and it gave me hope.


With the news of my recent blood test findings and upon recent research of polyarthritis, I'm a little confused.  I discovered a medical article from a reputable medical source which suggests that polyarthritis is incurable and results because of an underlying cause such as an auto-immune disease. I have so many unanswered questions. Why was I never told this? Why am I being lead to believe that I will get better? Why the heck am I on immune suppressing drugs if I do not have an auto-immune disease? Why am I taking medication which is used for the treatment of Rheumatoid arthritis? I can't help but feel that my Rheumatlogist isn't telling me everything. Especially after my last visit when she was discussing the side effects of stronger drugs. Why would she feel the need to discuss stronger drugs if I didn't qualify for them? Why is my Rheumatoid factor elevated now? I just don't get it. I have no idea what is happening with my own health anymore. I feel completely out of control. I just want this to all go away but I just can't help but feel I've been holding onto false hope.

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2 comments:

Tiff said...

Hey Emily,
I am now starting to understand what exactly you have and are experiencing at present. I hate it when doctors don't give you straight answers. It's confusing and agonizing not knowing what is happening to your own body. I don't blame you for having a million questions to ask your specialists and doctors, you should write them out and send them to your doctors, maybe then you might get some answers lol. Keep writing i like reading your blogs. love you hun xoxo

Emily Ruth said...

Hey love!
Yes it is especially frustrating when you don't have a name for you pain and you feel like you are just going crazy! I find it hard having hardly any control over the situation, especially when I don't understand what is going on. Sometimes I take a list in but most of the time I just have a mental list and ask if the opportunity arises. My rheumatologist doesn't answer questions very clearly at times and I don't often get given the chance to ask. Also all the medical terms are so confusing that I end up hesitating to ask questions but after my appointment I come out thinking of all these questions I should have asked but didn't think of! I'm learning to become more assertive and ask more questions though.I'm very blessed to have such an amazing specialist.I'm very thankful for that. Love you too xoxoxo

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