I suffer with problems in my joints, they have in the past been identified as autoimmune/connective tissue problems however I don’t have the blood markers to indicate a specific disease and my flare ups that debilitate are thankfully few and far between. But they are back.
My pointing finger (which is that?) on my right hand has always been the worst hit and it has flared up like a bitch. For the last week it has been getting more and more sore and then on Friday I had a power nap in the car and woke up with it completely seized up. The knuckles swell to twice their size and the movement becomes very restricted. Straightening it is very difficult. The pain is excruciating especially when I try to move, the best way of describing it is sickening, it feels very raw and even a draft of cool air can cause it to feel sharp fleshy tingles. Typing and using phones is awkward to say the least. My toe is swollen too much for me to wear most of my shoes and definitely not heels.
As this is the first flare up I have had since last summer, I am not being seen by any doctors, I will book into my GP when I have a day free but I don’t know when that will be and it is likely that by the time I get there the swelling has gone down, they will do a blood test where my results are “borderline” and I will be dismissed feeling like a crazy hypochondriac.
Although there are physical symptoms this feels like a silent affliction, the fatigue is vague and difficult to articulate as is the general aching in my whole body, it also comes and goes when least expected so it is hard to pin down.
How do I manage this and still get on with my busy life, making the most of all the amazing, busy, happy things that I’ve got going on?
The truth is I woke up this morning having had a sleepless night through all the pain, stressed out with a cloud of thoughts about what I needed to get done today, my head was tight and my neck sore and I felt like it wasn’t fair that I had to get up and get going. Numerous times I put my head back under the duvet and when I eventually moved to get a cup of tea I slumped in tears with the reminder that I needed to hang up the washing. I was, quite frankly, angry at the world, life, work, myself. I decided on a bath over a shower because the thought of standing up with sharp drops of water falling on to my sensitive skin seemed too painful.
But it is not all doom and gloom, I did get up, I did make it to my meetings and I had an appointment with one of the best physio/osteo I have ever come across. I had an appointment booked anyway for ailments in my ankle and lower back. They don’t like to do too much of a treatment when patients are flaring up but she did do some useful and rigorous manipulation of my ankle and back. She also has promised to write a letter to my GP (for what will hopefully be a double whammy cortisol shot for my f***ed ankle and my swollen joints). She also made me feel a lot less like a crazy person as she has now seen the swelling in my finger in addition to the swelling in my toe which has been there for a month.
I will probably write in more detail about autoimmune conditions but in the mean time I will book an appointment with my GP, watch this space for progress….
Becky – my daughter’s experience with autoimmune conditions is that levels of inflammatory markers shown on blood tests often don’t seem to correlate with severity of her symptoms. No idea why. She once described the pain in her feet as like the sickening, burning pain you get on stubbing your toe – except that it doesn’t fade like that does. Horrible. Just do what you can – and if your body is telling you to rest (fatigue), that is what you need to do. Hope you are feeling better soon.
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Thanks Lorelei, it is interesting that the blood markers don’t correlate, my cousin who has coeliacs disease wasn’t diagnosed for years through loads of blood tests, until she got a biopsy and they found that her gut was severely damaged. The stubbing the toe feeling is exactly what I get, it is sickening, I’ve had it really severely at night, where I can’t even lie under the covers because of the weight of a sheet pressing down on them. Sickening seems like a really good way to describe the pain – I think that might be because it is quite often combined with feeling quite nauseous and tired too. The fact that I have flared up again makes me realise that I should be getting it checked out again. Thanks for your support and conversations about this over the years.