rheumatoid arthritis
Aug. 2nd, 2012 12:16 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
aumentouIt's been nearly ten years since the pain started.
First a hotness, an irritation, in the knees. That got a little worse, then a little better when I started consciously trying to work my knees, make sure they moved.
The wrists were next, in the summer of 2003. My left was worse than my right, probably because it's movement-related and I'm right handed. It locked up, and I thought it was sprained. A month later and someone pointed out a sprain would have gone by then. It still has bad moments when it locks up, when keeping it still is very painful but moving it is agonising. But it doesn't do that if I keep it moving. If I stretch my hand back, many many times a day. If I lift weights in certain positions. Then it doesn't lock up. Then it is merely painful, all the time.
(I realise as I write this that I might seem slightly hysterical, and I might also seem like I'm overstating things. For the record then, I was in a medieval combat tournament in 2010. In the second fight that day I cracked a rib by falling over with a heavy guy on top of me. I won fights three, four, and five, where five was against the same guy. In the seventh fight that day I broke a finger, and didn't notice. Anyone thinking that I am overstating my pain can therefore fuck right off.)
From the wrists, the pain has spread up and down. My fingers hurt now. My hands too. Sometimes I can feel, in a not-painful but still really icky way, sometimes I can feel all the tendons moving in my hands, feel them sliding through the flesh. It has spread up, too. My elbows do not hurt all the time. Or perhaps sometimes it just does not register. When I am cold, when I am tired, yes.
My hips hurt, too. I do not know if this is related. In relatively recent history I have changed the way I walk, and it's possible that the new gait with greater hip-rotation has caused strain in unaccustomed ways. Sleeping is also harder now, and might be a contributory factor. Flat beds do not mix well with curved bodies. Sexist problems in our furniture, and our only solution is to make nests of pillows. Trust me, it's not as good as having a flat bed and a flat enough body to fit. Still, hips. They hurt, and they will not stop. A hot irritation, to go with all the other hot irritations. A node of sensation to tell me where my body is.
It was over nine years ago that I saw a doctor. He called it rheumatoid arthritis, checked when it had started and that it was more than six months ago (because if it had been less, there would have been a blood test and maybe drugs), and told me to take paracetamol. Since then there have been other doctors. None have done anything useful.
Two years ago I was looking to donate sperm, because while I couldn't afford to save any for my own use, I still had the urge to procreate. It's fair to say my feelings with regards to the value of my own DNA and the value of passing it on were pretty mixed. Nonetheless, I tried, and two fertility clinics (including one that had no donors at all) turned me down, on the grounds that with ME in two close family members and RA in me, clearly my immune system is fucked up.
This is context.
Today I went to see a doctor, again. Today it took fifteen minutes to get anything. First there was a hint of "you're imagining it", followed by a bit of "well if it's so serious, why are you only doing something about it now?". The usual things, in other words. Strange, but doctors don't seem to actually like treating patients, unless they can do it with antibiotics.
Fifteen minutes of argument, rage, and horror later, and I have three conclusions. First, the doctor says it's not RA, it's something else but he has no idea what. Which means (amongst other things) that "being honest" with the sperm donation place was a waste of time that cost me my last chance to procreate. Second, that I still hate dealing with doctors. As a profession I loathe them more than lawyers, and this loathing is based purely on my experiences dealing with them. Third, I have managed to get myself referred for physiotherapy. Whether this will help or not is another question, but it looks like the best bet.
It is just past twelve. So far today I have had a horrible emotional splurge, spent most of an hour crying, and found myself wishing pain on everyone who does not experience on a constant basis, to the point that I would quite like to line up everyone who is not by default in pain and carve holes in them with some sort of sharp instrument just to make a point. And this? This outome? This is the best outcome I have ever had, dealing with doctors on this subject.
Those of you who have read through this and during the whole time of reading have not felt any physical pain - you don't know how lucky you are.
First a hotness, an irritation, in the knees. That got a little worse, then a little better when I started consciously trying to work my knees, make sure they moved.
The wrists were next, in the summer of 2003. My left was worse than my right, probably because it's movement-related and I'm right handed. It locked up, and I thought it was sprained. A month later and someone pointed out a sprain would have gone by then. It still has bad moments when it locks up, when keeping it still is very painful but moving it is agonising. But it doesn't do that if I keep it moving. If I stretch my hand back, many many times a day. If I lift weights in certain positions. Then it doesn't lock up. Then it is merely painful, all the time.
(I realise as I write this that I might seem slightly hysterical, and I might also seem like I'm overstating things. For the record then, I was in a medieval combat tournament in 2010. In the second fight that day I cracked a rib by falling over with a heavy guy on top of me. I won fights three, four, and five, where five was against the same guy. In the seventh fight that day I broke a finger, and didn't notice. Anyone thinking that I am overstating my pain can therefore fuck right off.)
From the wrists, the pain has spread up and down. My fingers hurt now. My hands too. Sometimes I can feel, in a not-painful but still really icky way, sometimes I can feel all the tendons moving in my hands, feel them sliding through the flesh. It has spread up, too. My elbows do not hurt all the time. Or perhaps sometimes it just does not register. When I am cold, when I am tired, yes.
My hips hurt, too. I do not know if this is related. In relatively recent history I have changed the way I walk, and it's possible that the new gait with greater hip-rotation has caused strain in unaccustomed ways. Sleeping is also harder now, and might be a contributory factor. Flat beds do not mix well with curved bodies. Sexist problems in our furniture, and our only solution is to make nests of pillows. Trust me, it's not as good as having a flat bed and a flat enough body to fit. Still, hips. They hurt, and they will not stop. A hot irritation, to go with all the other hot irritations. A node of sensation to tell me where my body is.
It was over nine years ago that I saw a doctor. He called it rheumatoid arthritis, checked when it had started and that it was more than six months ago (because if it had been less, there would have been a blood test and maybe drugs), and told me to take paracetamol. Since then there have been other doctors. None have done anything useful.
Two years ago I was looking to donate sperm, because while I couldn't afford to save any for my own use, I still had the urge to procreate. It's fair to say my feelings with regards to the value of my own DNA and the value of passing it on were pretty mixed. Nonetheless, I tried, and two fertility clinics (including one that had no donors at all) turned me down, on the grounds that with ME in two close family members and RA in me, clearly my immune system is fucked up.
This is context.
Today I went to see a doctor, again. Today it took fifteen minutes to get anything. First there was a hint of "you're imagining it", followed by a bit of "well if it's so serious, why are you only doing something about it now?". The usual things, in other words. Strange, but doctors don't seem to actually like treating patients, unless they can do it with antibiotics.
Fifteen minutes of argument, rage, and horror later, and I have three conclusions. First, the doctor says it's not RA, it's something else but he has no idea what. Which means (amongst other things) that "being honest" with the sperm donation place was a waste of time that cost me my last chance to procreate. Second, that I still hate dealing with doctors. As a profession I loathe them more than lawyers, and this loathing is based purely on my experiences dealing with them. Third, I have managed to get myself referred for physiotherapy. Whether this will help or not is another question, but it looks like the best bet.
It is just past twelve. So far today I have had a horrible emotional splurge, spent most of an hour crying, and found myself wishing pain on everyone who does not experience on a constant basis, to the point that I would quite like to line up everyone who is not by default in pain and carve holes in them with some sort of sharp instrument just to make a point. And this? This outome? This is the best outcome I have ever had, dealing with doctors on this subject.
Those of you who have read through this and during the whole time of reading have not felt any physical pain - you don't know how lucky you are.
![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
no subject
Date: 2012-08-02 05:12 pm (UTC)Ask your GP to refer you to a different rheumatologist straight away. Keep asking 'til you get to see someone who takes you seriously. It took 3 rheumatologists for me to get a diagnosis of fibromyalgia, and during that process I heard some incredible nonsense. You have to be pretty hard nosed with the NHS, especially now everyone's trying to save money, and especially with hard-to-prove symptoms like pain.
The physio could still be very useful - most likely they'll give you regular 'joint check' exercises, but they can also measure whether you've any restricted ranges of movement and stuff like that.
no subject
Date: 2012-08-02 06:31 pm (UTC)I would suggest see a different Gp and request the blood test.
no subject
Date: 2012-08-02 08:56 pm (UTC)no subject
Date: 2012-08-03 10:04 pm (UTC)As for donating sperm, it does suck and I think I can understand your sense of loss and anger. I can't donate eggs now either or give blood or be an organ donor ever. :( Didn't get to save eggs too before treatment.
no subject
Date: 2012-08-04 02:56 pm (UTC)no subject
Date: 2012-08-09 09:38 pm (UTC)I wish I could say that I thought changing doctor would help, but I doubt it. I have also come to the conclusion that doctors are there to prescribe what I ask for when I already *know* what is wrong, and *not* to diagnose my illness, as 10 years of testing my blood, my bone marrow, the lining of my intestinal tract (not a pleasant procesdure, I assure you), and more blood testing, managed only to confirm that I defiantely have what I knew I had at the start, but they have no idea of the cause and even less idea about how to treat it. And that's just for *one* of the rediculously niggly and annoying genetic disorders that my sister, my mother and I all have...
That's all in addition to the fact that with every new doctor you see you have to go through the whole faff of A) getting them to believe that you're not just making it up (Maybe they need you to come in with a leg falling off as evidence that you're really ill?), then B) convincing them that it's not a passing niggle caused by being overweight that can be resolved by eating some salad and going for a run.
When a doctor does know what is wrong and how to treat it they're great! But chronic pain, mental health, blood disorders, connective tissue disorders, basically anything with few *visible* symptoms, they just plain suck at.
I empathise and sympathise deeply with your experiences of doctors!