Ninety nine per cent is how certain the rheumatologist said he was that I have fibromyalgia (see my post 'Something else'). However, he had x-rays done and bloods taken just to check that one per cent of possibility that it could be something else causing my pain. There are many things that can cause some symptoms similar to Fibromyalgia Syndrome (FMS) that can be picked up in blood tests, including hypothyroidism and vitamin D deficiency. These are two of the things I was tested for.
The results for hypothyroidism came through clear, which I was expecting as I've been tested for this a few times, most recently before Carpal Tunnel Syndrome surgery. What I wasn't expecting was for the vitamin D level result to show that I am severely deficient. My GP told me that vitamin D levels are supposed to be between 75 - 100 nmol/l, but my result came back at 16 nmol/l. With this severely deficient level and some changes seen on my x-rays I have been diagnosed with osteomalacia, which is the adult equivalent of rickets.
Rickets, and the tell-tale bow-legged appearance of those with it, occurs in children before the bones' growth plates have sealed, but once these have sealed and growth has stopped, the diagnosis is osteomalacia, often (and in my case) with multiple fractures and pseudofractures throughout the body. This certainly explains some of my pain and tenderness. In fact, vitamin D deficiency may well explain the terrible cramping I've had in my hands and feet, the muscle weakness, the lethargy, fatigue, and exhaustion I've had in addition to that caused by the POTS I already have.
As severe vitamin D deficiency can cause problems with bone density, and I am already at risk of developing osteoporosis because of the long-term high-dose steroids I take, I have been referred to have a DEXA scan. The appointment has come through for 21st January. I've had them before, but my last one was two or three years ago, so it's definitely time it was done again.
In addition to all this, I had another letter from the rheumatologist saying that the x-rays of my hands show the possibility of 'an arthritis'. He hasn't specified what kind of arthritis, just saying that I have some 'bony cysts' and that 'closer studies are needed.' I have to have a CT scan of my hands next Monday (14th January), and then I suppose I wait to hear of the results from that before any firm diagnosis is given.
I guess that any treatment for arthritis might depend on the type of arthritis it is, if it is. The treatment for osteomalacia and severe vitamin D deficiency is, not surprisingly, high doses of vitamin D. The prognosis for osteomalacia is pretty good if the right treatment is given, and the fractures throughout my body should heal in three to six months of high dose vitamin D treatment.
However, there is a problem (isn't there always?). It is proving incredibly difficult - actually, impossible at the moment - to find a preparation of high dose vitamin D supplement that doesn't contain something else to which I am allergic. My GP has written to my immunologist for some advice, although this perplexes me somewhat as I'm not sure that he'll know anything more about vitamin D preparations than the GP. I'd have thought that pharmacists would be the folk to talk to, and that, if necessary, pharmacists would be able to make a preparation of vitamin D especially tailored to my needs. The thing is, that while the GP and I wait for a reply from the immunologist, who may not have any answers anyway, I'm not getting any treatment, and I presume my deficiency is getting worse. Mind you, I don't know how long it takes for these levels to decrease.
The other thing I'm not sure about is whether I'll have to undergo any investigations to discover why my vitamin D levels are so low. I know that anywhere north of Birmingham doesn't have enough UVB sunlight between October - April for anyone to produce adequate vitamin D, but most people store up enough through the summer months to see them through the winter. Also, my blood tests were done towards the end of November so I still had most of the winter to get through, so what are my levels going to be like by April?
Of course, all of this leaves me not knowing if I do actually have fibromyalgia as well, and my GP says we won't know for sure until I've been successfully treated for the osteomalacia/vitamin deficiency for six months. In the meantime I'm still taking the powerful meds for neuropathic pain whilst not being sure that I need to. I'd rather not take them if I don't need them, not least because they make me so dopey that if I need to get up in the morning then I can't take the full evening dose. I'm due to go back to my GP for a review of these meds, with a view to raising them further, but I think I'm going to suggest that I don't take them until it's proved that I need them. After all, they haven't actually helped ease my pain anyway. The problem, though, is managing to wake myself up in time to make that 8.30 am phone call needed to get an appointment with the GP.
Something I will probably never know the answer to is whether the rheumatologist in part made his 99% certain diagnosis of FMS because of my scars from self harm, the 'newest' of which is ten years old. It would seem that however many years pass from those terrible years of self-hatred, self-destruction, depression, and suicidality, I will most likely always be judged on them, and they will always influence doctors who treat me for whatever reason. I wonder how surprised the rheumatologist is that his 99% certainty has proved to be wrong.
Showing posts with label fibromyalgia. Show all posts
Showing posts with label fibromyalgia. Show all posts
Wednesday, 9 January 2013
Wednesday, 5 December 2012
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.
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.
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