So far:
Diagnosed March 2011 with Rheumatoid Arthritis (ironically a student at the ME hospital told me to ask my Dr to check my hands - tests revealed very elevated RA markers).
Had scans, Xrays, blood tests and steroid injection in April at first hospital appointment in April.
RA nurse rang me back the following week to say my markers were off the scale and to come in the next day to start medication.
Started on Methotrexate tablets, folic acid to ease the resultant sickness, codeine for the pain, steroid tablets.
Meths made me so ill I changed to self injections to try and bypass the sickness. Added in Hydroxychloroquine (works the same way as meths, to try and stop the disease progressing), Amitriptyline (to help me sleep and also to help the codeine work), Omeprazole (protects stomach lining) and paracetamol.
I started having nightmares. This sounds a silly trivial thing, but these were off the scale - regularly woke crying, screaming and shouting. Dreadful things, technicolour, clear and lingered in the day. Pain continued.
Increased injections to maximum dose of 25mg.
Changed painkillers to Diclofenac.
Increased Diclofenac to slow release, stronger tablets morning and night.
Stopped both Hydroxychloroquine and Amitriptyline as the Prof suspected one was to blame for the nightmares. (These eased very soon afterwards)
Stomach pain, heartburn etc - suspected peptic ulcer from the Diclofenac. (Pain eased considerably after stopping Diclofenac)
Changed to Tramadol.
Doubled Omeprazole.
Calcichew tablets for very low Calcium and vitamin D.
Sigh.
Told to stop Meths injections just before Christmas as I was so ill, and struggling with the injections.
Changed to Suphasalazine tablets, to increase dosage very slowly. Suspected that my ME is hindering progress with meds.
Changed Tramadol to high dose slow release, to take one morning and one night, with paracetamol throughout the day, Only allowed one more lower dose tablet to top up on bad days.
And that is where I am now.
I have had a headache pretty much constantly, in varying degrees since starting the new tablets. I spend the vast majority of each day lying down, sometimes sleeping, mostly unable to get going.
I feel dizzy, woozy and spaced out.
If I take the Tramadol on a morning I am too zonked out to do much and would not be safe near roads - so I stay in. If I don't take it I feel more awake but am in considerable pain. Hey ho.
The pain is almost all day every day, and most of the night. I am a miserable cow!
I am due to see the RA nurse sometime late Jan / early Feb but no sign of an appointment letter yet.
I can't help feeling a little short changed - up until my last appointment I couldn't fault the hospital. But the last time, I saw a different consultant (so far I had seen one of two, and they always referred to the Prof who usually popped in to check on things).
So I had the age old thing of having to go through my progress / lack of it yet again. Last time I had been told that Enbrel or one of the new drugs being trialled should be the next step. I was quite excited about this having heard good things.
But nope.
Everything I read says after 2 failed DMARDS it's time to try a biologic drug. I am now on my THIRD DMARD. And I hurt!
There, that's more than enough. Just a down time at the moment and I am sure it will pass.
Onto other things.
I have this pattern on the way from America:
The front zip should be ideal for my knackered hands - hopefully a couple of these should be feminine enough yet wearable to get me through the spring.
I also like this dress:
Thanks for reading this far!
2 comments:
I can tell you that the tramadol thing will get easier over time. The best way to get used to it is to take it every 12 hours whether you think you need it or not. Your body gets used to it better and you don't have peaks and troughs. I admit I did spend the first year on it asleep, but as I was getting used the pain then, that was probably a good thing. When you get used to the tramadol you will be a lot more alert, but you will still lose concentration and won't feel safe to drive (that's what happened to me).
Its probably not what you want to hear, but eventually you will get used to the side effects and just bless that it takes the edge off the pain.
With regard to headaches, I always use 4Head, the mentholatum thingy in a stick. You rub it on your forehead and it cools your brain down quick sharp. I resorted to this because when you take as many pain meds as we do you can't do anything about a headache that involves more tablets. 4Head is the business!
Thank you, had completely forgotten about 4head! Brilliant idea!
I now take a slow release Tramadol morning and night, strong ones - am at the Dr Friday so will see what she thinks about hanging in there or changing, trouble is there aren't too many types left to try!
How are you lately?
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