Some progress, sort of… and a plan of action

I’ve been officially diagnosed for 3 weeks now and I think I have finally got over the initial shock. I went into that appointment expecting to be told to come back in 6 months because they didn’t know what was going on like usual, but instead I came out with 2 diagnoses of autoimmune conditions, a script for a DMARD [Disease-Modifying Anti-Rheumatic Drug] and an intramuscular steroid injection… That’s a lot to get your head around when you don’t think anything is going to happen.

I just wanted to up date you all on what has been going on with me since then. So first of all, I have noticed my Raynaud’s symptoms are popping up more than they used to… I.e. my hands and feet are constantly cold, and they change colour to this awful shade of white, they feel numb, and then when blood starts to return to them they go bright red and burn… pretty typical Raynaud’s symptoms there. I’m not sure whether I am just noticing these symptoms more because I have a diagnosis now and I am paying closer attention, or if the cold weather is causing more issues? I presume it’s a bit of both, however I have noticed that if I pick up a cold drink, or something out the fridge or freezer, my Raynaud’s symptoms flare, and that never used to happen… I virtually always wear gloves when I am outside now but it’s the activities in normal life that are causing the issue now, not the weather… I am definitely going to bring this up with my Rheumy in March, although I fear there isn’t an awful lot she can do other than offer advice. I have now started pouring my drinks into mugs with handles so my hands aren’t in contact with the cold for that long, and my Rheumy suggested wearing rubber gloves to get things out of the freezer so I will probably start doing that as soon as I get to the shop [life has been pretty hectic these last few weeks].

As for my joints… well they aren’t doing that great. I think I can officially say that the intramuscular steroid injection hasn’t helped, which is a shame but at least I know that it doesn’t help me now so I can [hopefully] avoid being jabbed in the arse again! I’m still experiencing about 2 hours of morning stiffness every day, my knees are swelling, my ankles are swelling, my hip is aching so bad, my PIPs [Proximal Interphalangeal joints… the middle knuckles] are sore, and puffy and turn pink so I think it’s reasonable to say that the steroid hasn’t helped me that much… In fact I am feeling so rough that I rang my GP and I have made an appointment for the 15th to hopefully sort out some symptom relief for over the christmas holidays until I can see my Rheumy, but I am not sure if I am going to manage through this week so I am going to ring my Rheumatologist’s advice line tomorrow and leave a message to see if they have any ideas on what to do. I am at the point where I would take a burst of pred, and I actually think I need one but I had a steroid injected into my butt just 3 weeks ago so I don’t know if you can take oral steroids so close to having an IM injection? I presume so because my old GP was happy to offer me 2 bursts of pred within a month of each other, but that will be something to bring up with my GP and Rheumy. I have also noticed a few new symptoms that have been gradually increasing in severity. The first is that my heels hurt, especially first thing in the morning… I can’t decide if it is actually my achilles tendon that is sore or if it is the attachment of my achilles tendon [AKA enthesitis] or if it’s both, but I am going to try and investigate a bit further into that. And the other is that my SI joints have been hurting, this has happened in the past when I have flared so it does kind of make sense that they are hurting now since I believe that I am flaring but it is really painful this time, more so than last time and it is really stressing me out because I can’t find a comfortable position… but such is life.

In the past I probably would have just dealt with my symptoms, and I am in two minds whether I am making this a bigger deal than it actually is but I am currently on my first physiotherapy placement at my local hospital which involves being on my feet for about 8 hours solidly a day [I usually get between 15 and 30 mins sit down time in that 8 hours] and I am actually really struggling, and some of my seniors have noticed it too and made the odd comment… I was taking part in a Pulmonary Rehab class to learn about what patient’s do in it, and it was obvious to everyone that my joints were far stiffer than everyone else’s despite all the patients being at least 5 decades older than me… slightly embarrassing as you can imagine.

This past week I have been really pushing myself on the exercise front. I have found a fab little gym that is outside and is on the riverside near where I live, and it has a lovely view of all the bridges, it’s really beautiful actually and is one of my favourite places in the world right now… I’ve managed to go to the gym about 3 times last week, and I have been again tonight. I find it really good to give my joints a good work out and it is helping with my joint stiffness, especially because I tend to go after I have been sitting down in a chair for a couple of hours doing work but it hasn’t really helped much with the pain yet… I also invested in a foam roller which hurts like hell but I can really feel it helping with any muscle tightness that I have. I am going to try and keep up this intensity of exercise for as long as I can, and I am going to try and get to the swimming pool at some point this week too [the swimming pool has really odd opening times which makes it difficult for me to go] which will hopefully help with the stiffness. I also see my new Physio on the 17th so I am hoping that she can help me out on reducing the stiffness.

All in all I think I am coping quite well with everything, the side effects from Plaquenil [mainly heartburn which meant I could only have one meal a day for 2 weeks] have subsided significantly, and I am still optimistic that it will start working… It can take up to 3 months and I have only been on it for 3 weeks so I’m not surprised I haven’t noticed any improvement yet… and if worst comes to the worst and Plaquenil isn’t the medication for me, well there are plenty others that I can try, of course I would rather this one work but I’m not going to get too discouraged if it doesn’t. This is the start of my journey into finding the treatment regime that works for me, and I am well aware from my experience with asthma, and from hearing about other people’s journeys that I might have a long way to go till we find the right med/combo of meds for me, but actually being started on meds is a move in the right direction!

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