Something else

There has been another long gap between posts, for which I apologise, but it's been for good reason.  I've been putting off writing this post - the post I promised you would be next.  I'm having a tough time and I've needed a bit of space.

Back in at the beginning of the summer I started to get pain and stiffness in my hands, in all the small joints of my fingers.  It quickly spread to both of each of my knees, my elbows, my shoulders, my hips, my feet, and my wrists.  Every morning I wake up and dread moving because I know it's going to be painful.  I went to my GP and was referred to a rheumatologist with the suspected diagnosis of rheumatoid arthritis.  I have to admit that I was anxious.  Rheumatoid arthritis is a horrible disease that attacks the joints, but after reading about it, I was bracing myself for a confirmation of my GP's suspicions.

The appointment with the rheumatologist was on the penultimate day of my last admission for my asthma.  Luckily it was in the same hospital that I was an in-patient so I was still able to attend.

I was in with the rheumatologist for about three quarters of an hour.  He took a full history and family history; he noted symptoms; and he did a physical examination.  He then said that he's about 99% sure I don't have rheumatoid arthritis, but that I do have fibromyalgia, although he's taken x-rays and bloods to be certain, and to check a few other things that can cause similar pain.

I had heard of fibromyalgia before, and know several who have it, but I didn't really know much about it, except what I was experiencing myself.  Although I was obviously relieved that I don't have RA, because I was almost geared up to hear that I did have it, it came as more of a shock really to be told that I have FMS instead.  It's scared me.  I know it's not a degenerative disease, so I ought to be thankful, but it is a chronic problem, and it is a painful condition.  It is a condition that, for many years, was dismissed as psychosomatic, and because of that I have felt some stigma attached to it.  More recent research has shown that it's actually a Central Nervous System (CNS) disorder, and the rheumatologist described it as a sleep disorder.  It's very complicated, and it's been difficult to get consistent, reliable information about it.

The rheumatologist said that for one reason or another people with fibromyalgia have difficulty with sleeping.  Many have insomnia, but more than this, it has been shown that those with FMS don't go in to stage four sleep - the deepest part of sleep; the part of sleep that is responsible for repair and restoration.  As a result of not entering this fourth stage of sleep, the body has a pain response, which itself then leads to more disrupted sleep.  However, the answer doesn't seem to be as simple as getting more sleep, and sleeping tablets don't help.  In fact, not a lot seems to help, including many pain killers.  The pain that those with FMS feel is a nerve pain - neuropathic pain - so, it seems, is best treated with neuropathic pain killers, which are most usually used as anti-epileptic drugs (though epilepsy and FMS are not at all the same thing or related).  I have been started on pregabalin, although it's a medication that needs to be increased slowly, so I'm only on a very low dose at the moment.  It will gradually be increased.

I was told that the pregabalin may not be enough, and that I may need a referral to the Pain Clinic at the other big hospital in the city, where they have access to other meds, and other forms of pain relief such as TENS, although I don't know how effective TENS is in FMS.  I'm not at the stage of getting a referral to the pain clinic yet, though.

I've found it hard getting this diagnosis, and one of the things I've found hard is that many of those with FMS say that getting their diagnosis was a relief.  I didn't feel this way.  I felt ... I don't know ... almost physically winded.  I felt shocked, because it wasn't what I was expecting or had geared myself up for.  I've since felt isolated because I haven't felt the relief that others have spoken of.  But the difference is that, for many, probably most, the road to a diagnosis of FMS is very long with many tests and many referrals for investigations.  I haven't.  I'm pleased I haven't, but as I say, this difference has made me feel alone.  And I feel alone because FMS is a diagnosis that most people don't seem to know about, or they know the old thinking of it being psychosomatic.  It isn't understood well even in the medical profession, and I am afraid.  I'm afraid that many medics will have the same out-dated perception of FMS as a psychosomatic illness, and that when my FMS diagnosis comes to light while I'm being treated for my asthma, then the asthma too will be dismissed and I will be under treated.  Perhaps that doesn't seem like a fair assessment of how things might be, but I base this on past experience, not of FMS, of course, but of self harm.  My scars are very old, but they're still very visible, and sometimes those scars have made some medics discount my asthma.  I have been under treated as a result.  I have almost died as a result of that under treatment.

It is very dangerous for a medic to presume that because someone has had mental health problems in the past that the same person can't possibly have anything physically wrong with them.  It is very dangerous, but it does happen, and when it happens it can have disastrous consequences.  Because it has happened to me before with the scars from old self-harm, it terrifies me that the same will happen with current fibromyalgia, with old attitudes towards it, and my very real, very physical asthma.  I am at the mercy of medics and their understandings, and when I'm in the middle of an asthma crisis I have no voice because I have no breath to speak.  It is amazing, in a terrifying way, that even when I am like that, and medical findings in blood tests and x-rays confirm the asthma crisis, they can all still be ignored and disregarded if the medic has a negative mentality towards mental health issues, or physical conditions once considered psychosomatic.

So no, I am not relieved, and yes, I am scared.  I am very scared, and I feel very alone.