"Where there is creativity, there is hope." ~ Donna Karan

The Joys Of MRI'S

by - Sunday, May 09, 2010

It has been really tough lately. For the past four months my joint pain has become increasingly worse. Most of my joints are affected by Poly arthritis; a non-effusive seronegative inflammatory type of arthritis (it doesn't show up on blood test or x-ray). The only joint that presents with no pain is my hip joint, so i'm pretty much used to aching all over. However, with each new day my pain has been gradually becoming harder to tolerate and I am finding it more and more of a challenge to manage daily tasks. Although I have pain mostly from head to toe, I have noticed that the joint pain is becoming more constant and this is now a major issue. It is also becoming more specific and isolated to certain areas of my body, and by that I mean that the pain defines itself more so in one or two particular "problem" areas, namely, my hands. When asked what hurts the most by my rheumatologist the answer has usually been everywhere. Now the answer is my hands.

I love writing and working on different craft projects whether it's cardmaking, scrapbooking or painting. I also work as a casual retail sales assistant I process sales, cut ribbon, answer incoming calls and count and close the register at the end of the day. I find myself constantly going back and forward between cutting ribbon, scanning product barcodes and entering data into the computer in order to finalise a transaction. All of this takes a toll on my painful hands.

Although i've had joint pain in my hands for the last four years I have never really had a problem with using them until now. At first I thought I was just having another flare up that would soon pass and when the pain refused to budge after a couple of months I then put it down to the cooler weather causing my misery. It's now been four months since my symptoms have worsened and the pain is still continuing to persist, showing no sign of disappearing anytime soon. It refuses to leave. Even the pain modifying drugs (i'll explain later) which I take are no longer working and I cannot get my pain under control.

In the mornings I awake to find my finger joints stiff, sore and a struggle to move, particularly my thumbs. Sometimes I have even woken in the early hours of the morning with stabbing pain in my thumbs making it impossible to move them. My wrists are becoming painful with frequent burning sensations, it hurts to open doors, brush my hair and opening jars has become quite a painful mission. This has never been a big issue for me in the past, every now and then my hands would give me grief but nothing like this. Why this is happening now has got me baffled. As well as the hand pain, my shoulders and elbows have decided to join the mix and the task of getting dressed is now a painful one. Occasionally the joints in my toes will decide that they are feeling left out, so they too will sing out in pain, causing walking to be quite uncomfortable and painful at times. My fatigue has now doubled with the extra pain that my body is having to deal with and i'm needing at least ten hours or more of sleep just to be able to function at a limited capacity. For the past couple of weeks I have been experiencing pain in my spine and to top it all off the painful symptoms of Endometriosis are slowly but surely making a unwelcome return, attacking both of my ovaries and my bladder. So it's now back to the gynecologist and back to the drawing board for treatment options.

A couple of months back I saw my rheumatologist and I spoke to her about my increasing pain. She agreed that the joint pain is becoming more and more defined; manifesting itself in my hands. So it's off to have an MRI (Magnetic resonance imaging) scan once again.

A few weeks ago when I was still waiting to receive my scan appointments, my rheumatologist called me on a Monday evening with my latest blood test results. My rheumatoid factor was up. I was in shock. Never in my four years of chronic pain had anything ever showed up in blood tests. All blood tests always came up negative, but this time, this time it was positive! I'm not crazy; my pain has finally shown up. This has definitely got to be an explanation for my increasing pain. Rheumatoid factor is a simple blood test which is used to help diagnose Rheumatoid Arthritis and varies other auto-immune diseases. My rheumatologist said to me over the phone that it was now very important to get the scans done as quickly as possible as the blood test result proved inflammation in my body and she was hoping that the scans will identify this and reveal this in great detail. So she arranged for me to get in quicker on the waiting list. She also told me that when I see her next she will have the scan results and that we would then discuss drugs.

The reason that I am not able to take stronger drugs is because the government place restrictions on them. Just because you have bad enough pain and your normal medications are no longer working for you isn't enough to justify your need for them. You have to have positive blood results and or scan pathology to qualify for them. So now that my blood test result has come back positive, i'm hoping that I can get the pain relief that I so desperately need.

In knowing that Rheumatoid factor showed up in my blood, a few people, even my own GP have suggested that this may mean nothing. True, there are some people who have the rheumatoid factor in their blood who are completely healthy, but seriously come on... a four year history of joint pain and recent increase in pain and then bam rheumatoid factor shows up? I know my body well enough to know that this is not just some flare, it's worse than that. Something has to account for my pain, if not rheumatoid factor, then what? Am I just supposed to live a limited life with this horrible pain that may mean nothing? For goodness sake, all I want is for this pain to be a little more bearable; and with that blood test result I just may be one step closer.

Now, this brings me to discussing my week. This past week has been especially tough. My pain has been at times almost unbearable and i've had so much on this week that the fatigue has been quite overwhelming. This past week i've been out of the house five days in a row. It is really a miracle that I made it though, so im celebrating by documenting it in this blog! I had commitments and appointments that needed attending and everything just happened to pile into the one week, which is not ideal for a chronic pain sufferer. If I had my way I would have done the very minimal but life doesn't always cater for the chronically ill, so without much choice I embarked on the dreaded week ahead of me.

On Monday I worked my usual short afternoon shift. I usually work on Wednesday afternoon as well but this week was different. I had two MRI scan appointments booked for Wednesday and Thursday afternoon, so that meant that I had to work my usual Wednesday shift on the Tuesday instead. Not having Tuesday as a rest day was draining enough to deal with on its own and on top of that I was to have both my hands scanned to check for any signs of inflammation which could be causing my significant increase in pain. On the Wednesday I was to have my right hand scanned whilst my left arm was injected with a contrast, and on Thursday I was to have my left hand scanned with my right arm injected with contrast.

On Wednesday afternoon I arrived for my scan appointment. I thought it was going to be quick, simple and pain free. Not so. Out of all the countless MRI's i've had in my young life, this one by far was the most uncomfortable and painful. It was agony. I had to lay on my stomach with my chin on a pillow, my hand outstretched in the machine in front of me with my hand padded ever so tightly that it was impossible to move it. That was bad enough. My other arm was tucked under my chin for support with the cannula which was inserted to administer the contrast injection digging into my arm. For the first five minutes of the scan I thought, this isn't so bad, but then my joints in my hand started giving me grief and I couldn't even move them to allow for the slightest relief. After another five minutes my hand became completely numb from being tightly squished into the scanner so that was great..... the pain subsided! However, because I had to have my whole arm stretched outwards my shoulder and elbow did not cope and the pain was quite intense. At one point I was struggling to hold back tears. I did let the radiographer know but he encouraged me to endure it as they had my hand in the perfect position for the scan and this was apparently very hard to accomplish as I was soon to learn the following day. So I lay there in awful pain expecting that it wouldn't take much longer. How wrong I was. It felt like it was never going to end. The radiographer kept saying "Last scan, you're doing really well....now we just want one more, no we want one more now, actually we need just one last one". It was torture. By the time I got out of the damn machine I felt as though I had just run a marathon. I had been in that horrid machine for well over an hour. It's difficult for anyone who doesn't have joint pain or any kind of pain in their hand for that matter to keep still for that long. It's an arthritis sufferers worst nightmare and I had to endure it all over again the next day. I cried myself to sleep that night.

On Thursday it was exactly the same deal, just with the opposite hand. Back in the same dreaded uncomfortable position, hand and arm outstretched, cannula digging into the other arm. For this scan though, the pain was a little more bearable, probably due to the fact that my right hand and arm is worse than my left. However, the radiographer just could not get my hand in the proper position. Six times I was pulled in and out of the scanner. The first couple of times I found it entertaining but after three failed attempts and counting, it was no joke anymore. I was frustrated, uncomfortable, annoyed and in pain. I went home that night nursing two bruised arms from cannula insertions, pain ridden shoulders, elbows and hands. Feeling tired, sore and sorry for myself; thinking NEVER again. Never ever again.

So now the very long two and a half week wait for the scan results begin....oh the joys of MRI's.

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