01/08/2014 First day of the rest of a rheumatoid arthritic kind of life

It was yesterday. The day that finally gave a name to the condition that I have been living with since around the age of 12.

Rheumatoid arthritis.

The sero-negative kind – which translates to the kind where nothing shows up on blood tests. No abnormal blood counts. No rheumatoid factors. Just healthy looking blood (which I suppose is a good thing).

It took almost half a year of insisting, an xray, 2 blood tests, and a rheumatology clinic referral to get me to the diagnosis yesterday. This is the current attempt. I have made numerous previous attempts in the past (since I was 12) to see the GP about an unexplained pain in my wrists, but to no concrete outcome.

 

It would appear impossible, if not the very least far-fetched, to have been suffering from rheumatoid arthritis at such a young age. But I remember that far back when I first started to get pains in my wrists. Pain that would make it difficult to move my hands and even to clench them into a fist. At its worse, pain that would keep me from sleep. I remember at the time all I was worried about was the legibility of my hand writing. I remember forewarning teachers at school that due to my wrist pain, I may not be able to write very legibly. How silly and naive that all seemed now!  At first I had reasoned that the pain was due to carpel tunnel or poor posture as I was an avid computer user (mostly playing games). Though after yesterday’s consultation at the rheumatology clinic that hopeful justification of denial was blown out of the water.

So what now? What now indeed!!

To be perfectly honest, it doesn’t seem that much different to the day before. Just now there is name for this pain. It wasn’t the diagnosis that I had wanted, but not much I can do about that. Should I have lived a healthier life when I was younger? In every circumstance and scenario this answer will always be YES!  Will it have made a difference? A question that breeds hopeful speculations which are comforting, but not practical.

I suppose what I really should be writing down is how I really feel about this revelation in my life. Today, was like any other day. I did life as normal. A luxury which I am afraid that I might not be lucky enough to have in a couple of decades time. I am afraid. To give the reader (whomever you may be) some context:

I am 25 year old Male living in the UK. I studied Pharmacy and am a practicing pharmacist. I am not completely ignorant of these health implications/consequences, I know what medications are used in the treatment of rheumatoid arthritis and their respective risks and benefits, I’ve served patients who have been treated with these medication to varying results, I have done an entire degree about drugs and despite all that knowledge and experience…I am afraid (and still to some degree in denial). Rheumatoid arthritis to me has always been something that I would expect to get when I am older – MUCH older! The scariest part is that my condition isn’t even considered to be ‘early stage’. It is in fact quite late stage and has progressed to the extent where the flexibility in my wrists have been heavily compromised. The x-ray that I saw yesterday confirmed that the bones in my carpus (the bones between your wrist and where your fingers start) are all very bunched up leaving little to no room between each other as one may observe in a healthy hand. On a plus note my bones did form properly as I was growing up, but somewhere somehow as I grew up the inflammatory process of rheumatoid arthritis was taking its toll on the joints.

I don’t quite 100% know exactly what to do right now in terms of treatment. I am not too keen on the methotrexate and NSAIDs and steroids route. I understand their benefits and risks well which is why I would rather not have to go down that route if possible. I understand that RA is currently incurable and the best form of treatment currently available is to target symptoms and suppress the body’s immune system.  Family members have been suggesting that I try alternative medicine/ treatment (i.e. acupuncture, herbal remedies from various cultures, nutrition etc). But the health professional side of me is skeptical of herbal remedies owing to the lack of evidence in some cases and the possibility of non-standardised formulations and presence of contaminants. I need more time to research. More time to really think things through. I need help!

~onlyren

 

 

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3 thoughts on “01/08/2014 First day of the rest of a rheumatoid arthritic kind of life

  1. HI Ren,
    I know how frustrated you must feel after such a long, long time. I am not yet diagnosed, but I am 95% sure that’s what I have. I am on Mobic twice a day. Good luck, and I hope tomorrow is a better day for you.
    Patty

    Like

    • Hi Patty!
      It is quite a relief to finally know what was actually ‘wrong’ with me. At least now I can try to be smarter with my living. I remember in my earlier appointments with my doctor I was happy that they didn’t diagnose me with RA, simply because its not something that I wished to have nor wish anyone to have. I do hope you manage to get a concrete diagnosis soon on your condition!
      ~Ren

      Liked by 1 person

      • Hey,
        sorry to hear about your diagnosis. I’m 29 with RA and I’ve had it since I was 17. Now you have got a diagnosis I imagine it has made it all real and more scary, if that’s possible after years of being undiagnosed.
        I am curious about your thoughts surrounding medication, the medication for ra can be scary, but also it can help maintain your ability to function. RA is nasty, the longer you put off any type of treatment the more damage is being done to your joints 😦
        I would recommend not using the knowledge that you have of all the nasty side effects of these drugs but look to the medical profession who are there to treat you. My biologic medication and methotrexate mean that I can continue to work full time and function almost normally 🙂
        I hope now you have a diagnosis they can put you on a treatment plan that is suitable for you and your lifestyle.

        Like

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