Agitated in the bedroom

Being in pain all the time is hard.

It does make me feel overwhelmed at times, and anxious and yes, even a bit depressed.

Depression was one of the key things that the PMU were focused on. They recommended that I begin taking an antidepressant. I suspected at the time and am now even more certain that they thought I was suffering from Fibromyalgia (FM), which is fine but if they suspected it, why did they not say that. Apart from being completely disrespectful, attempting to medicate someone for a condition without telling them you think they may have it? That’s just irresponsible and wrong. Were they planning to burst out of a cake bearing the slogan “Congratulations, you have Fibromyalgia!” at my review appointment and say “We knew you had it but we wanted it to be a surprise!”?

When I went to see them, I can see how they must’ve thought I was in a pit of deepest, blackest SAD. It was a combination of factors that made me so emotional when I saw them:

1. It was very intimidating and confronting going through that whole process, it was just horrible, frankly.
2. I had some of the worst PMS I’ve had in my life. The things that made me cry that week are laughable. Really, I was ridiculous.
3. I was taking prednisone which makes me crazy (letsgetupat3amandcleanoutthekitchencupboards style) and also makes me cry at the mere thought of something emotionally stirring like oh, let’s say, bagpipe music. NOT joking.
4. I actually was feeling quite depressed and anxious at that point BECAUSE OF THE PAIN!

Those things probably combined to make me seem like a complete loon and it’s no wonder they wanted me referred to a psychiatrist. I don’t blame them because they can only base their assessment on a brief snapshot of who I am.

It’s less easy to excuse the complete disrespect and disregard for the fact that I have never been depressed before (excluding a very bad teenage period). They questioned me about depression, over and over and over and….. you get the picture.

The other thing that I take issue with is the fact that they decided that my feeling depressed must be causing my pain. I tried to say that it was the other way around but they weren’t into that.

Lots of FM research suggests that sufferers commonly experience depression, I accept that, however there are also those who experience no depression or only experience it after the onset of pain.  It may be that antidepressants would help me but I would have to be a LOT further down the road of depressive illness to want to test that theory.

As it is, just the prospect that this medication might give me a bit of life back has changed my outlook completely. It’s amazing what relief it provides to have someone look you in the eye and say “I know you are in pain and we are going to fix it”. Just like that, a great weight lifted. I believe in R and she believes in me, that’s a doctor-patient relationship as it should be.  Trust and respect.

I belong to an RA forum and naturally, many of the RA sufferers there also suffer from FM. It is STAGGERING to hear how many of them have been told by doctors that FM is a fictitious condition created by bored housewives (really). I wonder, if it were a condition that was mostly diagnosed in men instead of women, how would it be treated? I wouldn’t mind betting that men wouldn’t be accused of having a “hysterical” condition and imagining their pain. It’s very frustrating that it’s such a long road for researchers to establish exactly what’s happening in FM but there are plenty of studies to show that there are differences in the central and peripheral nervous systems of FM sufferers. Actual brain differences. I wonder how the housewives managed to imagine that into existence? It surely can’t be a coincidence either, that 20-30% of people who suffer from another chronic pain condition (RA) also end up with FM. Sometimes the FM diagnosis comes first but there must be something going on there that connects the two.

At least I have something to research and get agitated about about whilst I lie here waiting for the medication to start working for the next couple of weeks.

Moving forward

So, today was the long awaited Rheum appointment.

I finally got to see my bone scan report. I would have liked to see the actual images but they don’t include those with the report.

Basically, it showed nothing. I have no (or very minimal) arthritis activity. Very minimal inflammation. It did show some joint degradation, particularly in my shoulders and the joints between my collarbone/shoulder and collarbone/sternum. That’s a bit annoying as I had hoped that we had hit on the right arthritis drugs quickly enough that I would be without joint damage. It’s brought home just how quickly this disease can damage my joints and I’m now just really grateful that my arthritis is actually under control.

So, you may ask, why have I been in so much crippling pain?

After we discussed the bone scan I was a bit crestfallen, I was predicting that the next words out of R’s mouth would be to say that I am fine and I am imagining it all. I think that would have been the last straw for me. Fortunately, she was quick to reassure me that she knows I am in pain, the pain is just not inflammatory.

She feels that I am experiencing neuropathic pain.

In particular she feels that I have fibromyalgia.

I’ve always sort of thought that fibromyalgia was a bit of a weird mystery condition. It seemed so enigmatic. It didn’t make sense to me and I have encountered so much information that seems to suggest a strong association with depression and anxiety. I just never thought that I fit in to those categories. I’ve also read that there are still doctors that don’t believe in it.

I didn’t want to have fibromyalgia because it’s something that can’t be measured. There are no blood tests, you can’t have a diagnostic scan. It’s just a cluster of symptoms (many of which I have) most notably for me though, fibromyalgia causes serious pain.

I didn’t want to have fibromyalgia because I didn’t want to add another illness to my repertoire. I’d like to stick to just the arthritis, please.

I don’t want to be the person with a hundred different medical complaints. Do you know how that sounds when you see a new health professional? I have this, and this, and this. Sound like a hypochondriac much? I hate being unwell and I hate being in pain and being labelled a hypochondriac, that people might think that I want to be ill? I’m not really up for that.

R doesn’t seem to think it’s an imaginary condition though. Apparently Rheumatologists believe in it and treat it. We talked about how well it fit with many of my symptoms. Apparently many people who suffer from RA also suffer from fibromyalgia. Apparently arthritis patients who develop fibromyalgia tend to experience pain in the joints that are affected by their arthritis, who knew? This diagnosis would also explain the fact that my pelvis has continued to case me pain despite the fact that it is now structurally sound.

The more I read about it now the more boxes I can tick. I have soooooo many of these symptoms, predisposing factors, possible causal factors. It’s mind blowing.

She has prescribed a new medication that is supposed to change the electrical activity in my nerves and in my brain. If it works I will be able to stop having my other pain medication, which would be fantastic. Not just fantastic, it would be monumental.

It may or may not help to reduce my ongoing muscle spasms (also a symptom of fibromyalgia) but if it doesn’t there are some medications we can try for that too.

I don’t want to have fibromyalgia. I don’t know why my body has decided I could do with a bit of extra pain but I am feeling pretty optimistic tonight. If this medication works it could change everything. I might just be able to start living my life again. I am having fantasies about being able to exercise*. Something I used to do but haven’t been able to do properly for years. I am feeling that there might just be a light at the end of the tunnel and THAT would be amazing.

I might always cringe internally at the label of fibromyalgia but then again, if this works and I get my life back, I might not care at all.

* I can’t quite believe that I wrote that sentence**.

** I also can’t believe that it’s true. Surely it’s not normal to long for exercise. That’s just wrong.

Holding Pattern

Oh, how I wish I could come here and say that I have turned a corner. That the massive injection of steroids I had last Monday or the four week course of pred did it’s job and my body is now taking the hint and laying down weapons, stopping it’s vicious unprovoked attack.

I wake up every morning and try to lay for a moment and run through what’s going on in my body. Check each joint, how are the pain levels, Ali? The answer is always the same. It’s like waking up to the roar of a furnace blasting my entire body with white-hot pain.

We go through the routine. I call Beefy (who has already been up for ages and taken the kids to school, usually) and he gets my morning dose of pain meds, gets my breakfast, heats my eleventy million rice filled socks and giant pillowcase (also fetching children’s tights wrist bands) in the microwave so that we can try and get some of the muscle spasm under control and I get some pain relief while I wait for the meds to kick in.

I make a deal with myself that I have to eat x amount of whatever breakfast is and them I’m allowed to stop. I have almost no appetite. All eating is a bargain I make with myself. You have to eat enough to keep going, Ali.

Beefy tells me: “Look how much you ate! Well done.”

We laugh but my smile is tight. The laughter hurts.

I saw a different GP in the practice a couple of weeks ago when my back had some sort of drastic muscle spasm attack that left me in unprecedented pain. She prescribed muscle relaxants that help SOOOOOOOOO much. My GP is really against me taking them. She keeps asking me if I have.

“They are addictive you know”.

“Only occasionally”, I say. This is mostly true. Yesterday was a terrible day, I had three yesterday. Three is half the maximum dose as prescribed but three is three too many for my GP. They just help soooo much. Sometimes I just need the relief. I feel guilty.

I am just making my life bearable from moment to moment.

Still don’t know about bone scan results. I can’t imagine that they will show nothing. How is that even possible when I feel so awful? It is possible though. If anyone is going to end up with useless bone scan results it will be me.

I read up about the anti-depressant the PMU want me to take. It is not indicated (even off-label) for my condition. It is indicated for osteoarthritis, fibromyalgia, neuropathic pain caused by diabetes, anxiety and depression. Rheumatoid arthritis? No.

I read studies and reports from patients. They report very little help with pain and terrible, crippling side-effects. Even those prescribed it for depression who have had some success say it was a nightmare in lots of ways. To cap it off, there are apparently months of relentless, horrific withdrawals when you try to come off it.

Why would the PMU think it would be a good idea for me to try this drug if they are so concerned about my being addicted to pain meds?

They are moronic arseholes.

There can be no other explanation.

I had left myself open to the idea of trying it at some point but now I know that I will definitely not try it. Some of the patient reports said they had been off it for months and were still suffering. They said they were scared they would never feel normal again. There is nothing any doctor could say now to make me try it. I will not take the risk.

I am waiting to here back from the Rheum. I hope she has something else to try.

I am just waiting.

South Australians denied basic human rights

A question in the comments of my previous post made me realise that I had not quite explained the current situation here in South Australia adequately. It’s like something out of the twilight zone. Prepare to be appalled.

Narcotics prescribed for pain management used to be regulated by the Drugs of Dependence section of the South Australian Health Commission. They apparently did a very good job and people suffering from chronic pain were allowed to receive their medication and be treated with dignity. About 18 months ago, the job of regulating prescription authorities was transferred to Drug and Alcohol Services S.A. (DAASA).

DAASA is a board that basically exists to tackle illicit drug use, to prevent and manage problems of drug addiction and abuse and to increase community awareness of these problems.

DAASA is not interested in chronic pain sufferers need for relief. Basically if anyone has been taking opioid medications for longer than their arbitrarily defined length of time or requires a higher dose than their arbitrarily set limit, they are classified as drug addicts.

People suffering from chronic pain have been forced to attend drug treatment programs and to line up with drug addicts to receive their daily allocation of medication.

People have had their prescriptions reduced, against the advice of doctors prescribing these medications and often without any consultation with the prescribing doctor at all.

There is sound research to support the fact that there is no upper limit for prescribed opiates (a person’s tolerance to these drugs increases over time) and that whatever the level of drug required to treat a person’s pain is the appropriate dose – providing this is monitored carefully by the prescribing doctor.

A chronic pain sufferer in South Australia (ironically a former GP) is now taking the South Australian government to court over the fact that she is no longer allowed to access sufficient pain medication to manage her pain. She has also been forced into a drug addiction treatment program. This article describes her current situation and highlights the appalling situation for many chronic pain sufferers in South Australia.

Many people are forced to travel interstate or attempt to buy illegal drugs in order to find a way to manage their chronic pain.

This website offers more information about the current situation in S.A. and presents several stories of DAASA’s appalling treatment of chronic pain sufferers. It makes for some really interesting reading.

The issue I have is that probably the safest thing for me to do now is to stay “under the radar” to hope that the PMU forgets about me and doesn’t attempt further involvement in my care. The PMU has been instrumental in recommending that DAASA limit people’s access to pain medication and it is not uncommon for them to label people as mentally ill or to decide that they are drug addicts and proceed accordingly.

I wish I had known much of this information before I sought help from the PMU. I naively believed that they would listen to what I said, believe me (and my doctors) and try to offer strategies to help me.

I am extremely fearful that if I try to tackle my mistreatment by the PMU I will draw attention to myself and thereby involve DAASA in my case. The PMU may have already flagged my case with DAASA, which is terrifying.

Who would have thought that such a situation could exist?

What to do, what to do

Bizarre happenings today my bloggy friends.

Had a good appointment with my GP who was suitably disgusted with the way I was treated at the PMU. I think we both regret having any involvement with them now but hindsight is a wonderful thing. Who knew that a hospital unit that is apparently dedicated to helping people manage chronic pain is actually much more interested in labelling them as drug addicts and declaring them mentally ill.

My GP agrees that we will NOT go forward with their recommendation that I be referred to the hospital psychiatric unit so that I can start anti-depressants and come under the ongoing care of a psychiatrist. She agrees that this is a crock of shit and potentially leaves me open to future discrimination and bad treatment by unscrupulous medicos.  She agreess that I am suffering from reactive depression CAUSED BY MY CHRONIC PAIN and not an ongoing mental illness, which makes me imagine I am having pain.

We agreed that it would be ideal for me to see a psychologist again to help me with coping strategies for my pain but she feels very nervous about creating a mental health plan for me (this means Medicare pays) because she says that once it’s out there in the system it could be used to support a claim of my having an ongoing mental illness, when of course I do not.

She informed me that the PMU have asked her to wean me off of opiate pain relievers (because of course I’m a drug addict) despite the fact that I have now been taking them again for the astounding period of two weeks after nearly 3 months of nothing. She views this as a total crock of shit also.

She was horrified by their implication that my Rheum had been negligent or misguided in her treatment of me. She knows R and has other patients who see her. My GP reaffirmed that R has an excellent reputation and the notion that she would prescribe unnecessary medication to a patient (who might not have arthritis at all) is ludicrous.

They advised her that they will be seeking to review my progress in three-four months. She advised me that I should not submit myself for review. She is basically hoping that if we ignore them they will go away. I think she feels a bit to blame for referring me to a service that she thought might help me but instead has put me at risk of being very badly mistreated.

I feel very relieved that I have a GP that is totally on my side in this issue. I feel reassured that she does in fact trust and know me to some extent now and will do all that she can to prevent me from being mistreated.

THEN

This afternoon an envelope arrived in the mail from the hospital. I have been booked in for a whole body nuclear bone scan on FRIDAY. Now, anyone who knows anything about public hospitals knows that the waiting lists for these things can be months, if not years long.

I have no idea who has booked me in for this test. It could be R but she hasn’t called to say that she did it and when I spoke to her about it last week she said she’d be happy to organise it but gave me no indication that there was any urgency. The date that the scan was booked WAS the same day that I spoke with her so I am hoping it was her.

If the PMU has booked this scan and they do not find results supporting my diagnosis of arthritis (which is entirely possible because the whole point of treating the arthritis is to avoid bone damage/change such as would be detected with this scan) then it could be used as further justification for denying me pain medication or to support the idea that I have nothing physiologically wrong with me and my pain is all in my mind.

I don’t mind telling you people that I am a little apprehensive. If R has ordered it then all well and good but if the PMU has ordered it what do I do?

I think I am going to call R’s rooms tomorrow and ask for confirmation that she is the one who has ordered the scan. I am seeing GP again tomorrow for a steroid injection in my arse (another attempt to force my body to stop attacking itself in the frantic way it appears to be at the moment). Maybe GP will have some thoughts.

For the moment I am nervous.

It shouldn’t be this way. I shouldn’t have to play strategy games so that I receive appropriate care. It’s just all so crazy.

Oddly though, my state of mind has improved dramatically, at least for now. I think all of the support I have had from you, dear readers, coupled with the reassurances from R and GP have helped immensely.

I can’t help feeling though that this is just not how it should be. Doctors making patients jump through endless hoops.

This is not how it should be at all.