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

Broken Heart, Broken Hope

by - Saturday, September 11, 2010

In December 2009 my rheumatologist informed me that my fibromyalgia was in remission. I was both elated and shocked, although, apart of me questioned her judgement because I was still in pain. Having been diagnosed with both fibromyalgia and polyarthritis back in early 2007, I lived with constant muscle pain caused by fibromyalgia and painful joints as a result of arthritis. Fibromyalgia is constant widespread pain predominately in the muscles, ligaments and tendons and as I was experiencing hardly any pain in my muscles and clinically showed signs of improvement with a lack of trigger/pressure/tender points upon examination, fibromyalgia was no longer a concern. I stopped medication as advised by my rheumatologist and the pain I was still experiencing was put down to polyarthritis, which my rheumatologist continued to treat me for. Fibromyalgia isn't something that you recover from immediately and you can't click your fingers and return to your former lifestyle or you risk a total relapse, so I knew healing was going to be a long process. Fibromyalgia is a baffling condition that has no cure so I knew I was blessed to be in remission. The cause of fibromyalgia is unknown but in my case, arthritis caused it. I was told by my rheumatologist that because my fibromyalgia was in remission, the type of arthritis I had would likely go into remission too, only it was a matter of when.

After fighting and accepting fibromyalgia as apart of my life for three years I had to make extremely difficult emotional adjustments now that it was in remission- fibromyalgia no longer ruled my life and no longer would it dictate what I could or couldn't do. Fibromyalgia was history, it no longer had a hold on my life and with the hope and faith that my joint pain would also fade into the past, I was ready to get on with my life. I started making plans, I started dreaming again. I woke up every morning with the hope that one day soon I would be able to wake up and continue living my old life. I went to sleep with the hope that one morning I would wake up with no pain. This week that hope was shattered.

I saw a different rheumatologist while mine was away who gave me a very different opinion indeed. He confirmed that it is highly likely that I have rheumatoid arthritis, I wouldn't be taking medications used in the treatment of rheumatoid arthritis if they were not convinced that it was what I have, but what he also said shocked me. He said that I still have fibromyalgia. It never left. At first I thought he was a complete moron who had no idea what he was talking about but as he explained why I began to understand and somewhat agree with him. He stated that rheumatoid arthritis only accounts for 5% of my pain, there is no doubt about that but the other 95% is fibromyalgia pain amplifying the joint pain. The predinsolone trial as I suspected should have worked and the reason why I am not responding is because of the fibromyalgia pain. The condition involves hypersensitivity in the nervous system that amplifies pain (I'll explain more about this later). Therefore I am feeling more pain than what I should be. As I'm only showing early signs of rheumatoid arthritis with no signs of swollen joints, it doesn't explain why I am so disabled by it, and I totally agree. I should be able to manage work, so it is the fibromyalgia that is causing strife. As my arthritis isn't bad enough it doesn't warrant stronger drugs. What I don't get though is how do I still have fibromyalgia if it is not affecting my muscles as much? According to the rheumy that I saw the other day, my fibromyalgia has moved from my muscles into my joints. I'm devastated. I got my hopes up thinking that I would get stronger drugs that would help me to live a better life and here I am being told that my fibromyalgia never left. If it was just arthritis that I had, it could be treated but fibromyalgia is very difficult to treat. I was advised to go back on treatment for fibromyalgia which makes me feel miserable and fatigued and basically told to live with and find alternative ways of coping with the pain. It does make sense that if my arthritis is causing fibromyalgia that I would still have it. According to suspected causes for fibromyalgia, rheumatoid arthritis is one of them. It is very common for them to go hand in hand.

What I am finding incredibly hard to understand is why my first trial of prednisolone a few years ago worked brilliantly and as I thought about it I realised that I had fibromyalgia back then and the medication I was on helped managed the pain to an extent, therefore I noticed the improvement in my joint pain as I wasn't distracted by the fibromyalgia pain. Are you confused yet?! Welcome to my world! So now I am wondering if I get the fibromyalgia pain to a manageable level and tried the prednisolone again would my rheumatologist give me the stronger drugs like she said she would like too? My next appointment is going to be an exciting one. Two rheumatologist's discussing (that's a polite way of putting it, lets use 'fighting' I like that visual much more) how I should actually be treated and what my diagnosis/prognosis is.

So here I am with pain that can't be fixed, feeling hopeless and choking back tears. I've gone from being told that my fibromyalgia is in remission and that my arthritis should hopefully go away to being told that I more than likely have rheumatoid arthritis and have had it for the past four years to then being told I have always had fibromyalgia. This is all too much for my twenty two year old brain. I'm a mess. I am fighting a monster that no one seems to know much about, I can't seem to get clear answers and everyone has a different opinion on treating it. I'm confused, frustrated and upset. I don't want to play this game anymore. I don't want to ride this roller coaster, I want to get off. I have so many questions I don't even know where to begin. Why would my rheumatologist tell me my fibromyalgia was in remission when it isn't? Why would she talk to me about getting stronger drugs when I don't even qualify for them? Why would she tell me that she would love to give me the better drugs if I don't need them? I don't even know what to feel anymore. Numb is what I feel. Is this some joke? I feel like all the doctors have done is mess with my head and my emotions. All they've done is give me false hope. I chose to believe that I was getting better, I trusted in my rheumatologists ability and now I'm at the point where I don't even know who the hell to believe anymore. I'm considering a third opinion, but would that do any good? It would probably cause more confusion and I don't need anymore, I can't take anymore. I'm tired- I'm tired of trying drugs, tired of going around in circles. Where has all this got me? No where. I'm back right at the beginning with no stronger drugs, facing uncertainty and constant pain. I'm angry. Part of me wishes I hadn't seen a different rheumatologist, but I also want to know the truth and if this is the truth, it really hurts. I'm heartbroken. My hope has been broken into a million pieces on the floor and right now I am trying to pick them up and put them back together. This is NOT a hopeless situation. I REFUSE to believe that.

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