A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

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.


Bellsie said...

Hi Becky,

I've been reading your blog for a while - I can't even remember where I came across it!

Anyway, I'm glad that you're out of hospital and I'm sorry that you've been diagnosed with Fibromyalgia. I know what you mean about people misunderstanding chronic pain and saying that it's all in the mind.

The thing that particularly interested me was what you said about physical illness being treated differently because of mental illness. When having orthopaedic surgery in the past I've been very worried about mentioning the drugs that I take out of fear of what they might do differently. As it was, I was told that I probably shouldn't have an op under an epidural because of my condition... which makes no sense as my OCD has nothing to do with that sort of thing!

Anyway, I was wondering if you'd be interested in doing a guest blog on my blog on the topic?

Bellsie xx

Diana West said...

Sorry to hear about your "latest" diagnosis, Becky. If it helps, my mother has fibromyalgia and it's not been dismissed as psychosomatic at all. She was a nurse (and is now 92) so is well-versed in the "old ways"! I think fibromyalgia has its good and bad days and certainly pain relief helps.
Hope the meds start to kick in soon.
Diana xxx

BeckyG said...

Hello Bellsie, thanks for your comment, and of course for reading my blog. Thank you also for the offer of doing a guest blog on your blog. I would be delighted and honoured to do so. Just let me know what you're looking for, length, how we go about it etc.

Thanks again for reading, and for this opportunity to talk more about this important topic.


BeckyG said...

Hello Diane,

Thank you for your encouragement with this. As you can probably tell from my post, I have been very concerned about the presumptions that can be made based on old ideas. It's reassuring to learn that your mother hasn't faced these. I hope I won't either.

Your comment appeared twice so I deleted one of them. However, it now appears to be announcing to everyone that you had a comment removed. I'll see if I can change that too, but in the meantime, I just thought I'd let you know.

Again, thank you. I need to hear these positive things about FMS at the moment.


Sal said...

Hi Becky, as you know I was dx-ed with FM a few years ago. I think the pain clinic is a very good idea. TENS does help but I don't find it as portable as the medics claim! I am a fidget-butt so maybe that's why it falls off so often! The pain consultant has access to drugs that your GP doesn't so I would definitely ask for a referrral.
Learning to pace is also hugely important to FM - there's lots on this on the internet.
Bellsie, I too have OCD & have scars like Becky - it blows my mind that someone would suggest it might affect your epidural! Having said that, I've been blocked from having two urgent surgeries because there's a risk I have MS - even though people with MS are perfectly capable of handling anaesthetic! The aneasthetic made this decision without even consulting me, my GP or my neurologist.
Becky, I think I may have mentioned this to you before but depression is a symptom of FM & some of what you're feeling may be worsened by that. I am sure that, with medical help & the support of friends & people here, you will reach some equilibrium soon.
What you are experiencing is sadly part of adjusting to a new dx. I know you have heard many stories (mine included!) about the relief of being dx-ed with FM, but there will be many more that arent so releived. It might be worth posting on an FM forum about that as I'm sure you'd find others going through the same reaction that you are. xxx

Bellsie said...

Hi Becky,

That's fantastic, thank you! If you want to email me at obsessivelycompulsivelyyours@hotmail.fr then I can tell you more! But to be honest, it can be as long or short as you wish and there is obviously no time restraint!

Sal - I know. It's something that I really hesitate mentioning to non psych doctors.

Bellsie xx

Dawn said...

So sorry to hear about this new diagnosis :(
I hope that medics treating you will pay more attention to your presentation and history rather than any antiquated opinions surrounding mental health. I've also had experiences where my physical health has been disregarded due to medics negative views towards mental health issues, so I know how damaging these experiences can be :(
Sending you hugs
Dawn x

Raven/Missy said...

I am sorry to hear that you may be diagnosed with Fibromyalgia. I understand your fear about being under treated due to outdated beliefs by doctors, specially after having it occur due to your prior mental health issues.

I've had similar problems. In fact, it was just such a misjudgment by my primary care doctor in 1995 that caused me to be permanently disabled. He dismissed all my symptoms, refused to do any tests (no x-ray, no MRI or CAT scan) despite my asking for them. At the time I was struggling with depression and a great deal of stress as I had just found out that my ex-husband had raped our daughter. My PCP insisted that my lower back pain (despite strong sciatic symptoms such as loss of bladder control) was psychosomatic due to depression and stress. He passed that on to the orthopedic doctor he sent me to, who agreed and also refused to do any testing. Instead he caused a mild bulge in my L4-5 disc to turn into a rupture that was strong enough to embed disc material in the sciatic nerve root at that level, and to cause disc material to go through the nerve and into the abdomen. The disc then herniated again hiding the rupture. It was a third doctor who finally got me set up for the proper tests I should have already had, resulting in my needing surgery and having permanent nerve damage that made me disabled, causes issues with bladder control, and bowel control. So I do understand how a doctor's misconceptions and outdated ideas can be very very harmful to the patient.

I do hope that your doctors (both out patient, and in hospital) do not do that to you again! I will keep you in my thoughts and prayers as always.

BeckyG said...

Thank you all for your good thoughts and your support. I need to write an update about what has happened since this post, which I will do in the next few days. In the meantime, I'm so sorry to hear that so many of you have had such negative experiences in the past, including terrible misdiagnoses. It's wrong and it angers me that these things happen, and apparently happen so frequently. Thank you again for your support.


Sarah said...

JUst wanted to a) send hugs and b) tell you about my recent experience of prejudiced doctors. AS you know I've been in an awful lot of pain lately and under the hospital for it. BEen told by consultant he's doing a ct scan and if all clear will be discharging me to the pain clinic without knowing the cause. WE went to my gp for advice to see if anything else we could do to find out why (don't want to be on tablets for an unknown illness for rest of life and also fed up of being told different things every time we go) anyhow gp said I just have to accept it and went on to ask how depression was. told her I'd upped my meds, her reaction was "that might help the pain" basically suggesting it's all psychological, I kept my calm and put it down to mishearing her, but then a few mins later after telling her we're away for Christmas I got the reply "fabulous, a change of scene might make the pain disappear". ARgh. JUst because they can't find the cause from a few simple tests does not mean I'm imagining it, and just because I've upped my ad's does not mean the depression is the reason for it. PErhaps she should be in constant agony and unable to live a proper life and them tell me she's not struggling.

SOrry honey didn't mean to go on this post just hit a really raw nerve!!!