There are days...

I have to say that there are days when having Complex Type 2 Post-Traumatic Stress Disorder, Dysthymia, Fibromyalgia, and a Hiatus Hernia is a bit of a drag. Lately I've been spicing it up with panic attacks and mild paranoia. I know that people are not aiming to harm me, but try telling my endocrine system!

I'm not sure how much longer I can live like this.

Fibromyalgia Awareness Week, Sept 4-11

www.fibromyalgia-associationuk.org

Fibromyalgia Drugs

Drug Class Review: Drugs for Fibromyalgia: Final Original Report [Internet].

Smith B, Peterson K, Fu R, McDonagh M, Thakurta S.

Portland (OR): Oregon Health & Science University; 2011 Apr.
Drug Class Reviews.

"We compared the effectiveness and harms of tricyclic antidepressants, serotonin norepinephrine reuptake inhibitors, selective serotonin reuptake inhibitors, selective serotonin and norepinephrine reuptake inhibitors, noradrenergic and specific serotonergic reuptake inhibitor, norepinephrine and dopamine reuptake inhibitor, serotonin receptor antagonist, antiepileptic drugs, and skeletal muscle relaxants in adults with fibromyalgia."

Abstract and conclusions online via PubMed.

Have you tried...

Earlier I wrote that I hate getting medical advice from ordinary people. Any sentence (let aone conversation) where the opening gambit is "have you tried..." is a non-starter as far as I'm concerned. Not interested. Actually I've noticed that very few people can take in the complexity of my illness. They tend to latch onto one symptom and ask about that. For the first 3 years people would ask about my hands.

"How are your hands?"

"My hands are fine. I've never had a problem with my hands. What hurts are my elbows, upper-arms, shoulders, my back, my neck, and more recently my hips, and thigh muscles."

"Oh...."

Then the next time I see them.... "How're your hands?"

The other thing that people can relate to is sleep. I've often in an advanced stage of sleep deprivation and struggle to know which way is up. So then I'll get:

"Sleep OK?"

"No."

"Oh."

"Sleep OK?"

"No."

"Oh."

etc for weeks on end...

I stopped joining my housemates for breakfast years ago. (besides they eat loudly which disgusts me)

I know it comes from concern but somehow concern for me gets tangled up in their own views of the situation. They'll ask my about a headache I had 3 days ago.

"Head OK?".

"What?"

"You had a headache..."

"Yes, on Monday I had a headache, it's Wednesday now. You saw me yesterday and I apparently did not have a headache then either."

"Oh".

It's like somehow humans lose the ability to communicate effectively with me because I'm in pain. They focus on the pain that they can relate to, and forget to relate to me as a person. Or something. Fucked if I know really, but it's frustrating. I know I'm grumpy and that doesn't help. So what is wrong with me?

Pain in the tendons around my elbows, the ends of my deltoid muscles and all of the muscles/tendons around my shoulders and shoulder blades. Pain in my mid, upper back and neck. Pain in my jaws. All of my muscles are quick to fatigue and slow to recover.

When I say pain it varies. It can be burning with aching (as now), or just a dull ache, or a deep unsettling ache as if in my bones. It can be sharp frightening pain as bad as any I've felt.

Frequent headaches. Migraine. Insomnia - trouble getting to sleep and staying asleep, early waking. Un-refreshing sleep. Restless Legs Syndrome (RLS). General fatigue. [I also have problems with my teeth, psoriasis, I'm obese - sounds attractive doesn't it?].

I have trouble concentrating and remembering things (I used to be clever). I am constantly anxious, sometimes to the point of paranoia and panic attacks. I experience repeated bouts of clinical depression with suicidal thoughts (I took an overdose in 1999). I'm given to bouts of (mostly internal) rage.

Along with all of this my marriage ended. I lost my job. I'm stranded on benefits in a foreign country. I'm unable to do things like play a guitar (after 25 years of it being one of my main interests). I've had many diagnoses such as: Major Depression, Borderline Personality Disorder, Fibromyalgia. Many people want to label me with Chronic Fatigue Syndrome - again it seems to be what they've heard of - and they're like people who's only tool is a hammer: everything starts to look like a nail. Though Mr Gupta acknowledges that the two conditions are different (there's no suggestion of a viral trigger for FM as far as I know) there may well be a similarity in the underlying causes - i.e. a badly trained amygdala.

My last girlfriend left me because I apparently complained all the time. But the cow was forever asking me what I was thinking about or feeling - every five minutes like a five year old "what are you thinking about?". I think about pain, I feel pain. That's about it really. She kept asking, I kept telling the truth. I'm glad she's gone.

I started off today thinking I would list the treatments I'd tried (other than recreational drugs and alcohol in my youth which didn't really work either). I trained in the sciences so I don't have that much time for the airy-fairy stuff - I have tried a few alternative treatments and they have one advantage over drugs. No side effects. However they have had no effect what-so-ever. To date I've tried:

Antidepressant drugs, anti-anxiety drugs, anti-seizure drugs, anti-inflammatory drugs (now I'm a bit anti drugs). TENS, exercise (swimming, yes), stretching, heat packs, hot baths (with and without bath salts), hydrotherapy. Homoeopathy, acupuncture, kinesiology, vitamins, massage, deep tissue massage, shiatsu, osteopathy, active release techniques (McTimoney chiropractic). As a Buddhist I have been engaged in meditation, mantra recitation, prayer etc. In the last 10 years I've had 6 years of intensive psychotherapy - the Karuna Institute, psychosynthesis, body psychotherapy (disaster!). I started but could not finish a mindfulness based stress reduction course (the techniques activated my RLS and just made me worse, a lot worse).

At times some or all of these provided some short term relief. Nothing has made any long term difference.

Now I'm doing Tai Chi and the Gupta Amygdala Retraining Program (ARP). The Tai Chi is very helpful - grounding. Helping me with body awareness without sending me into the twitching hell of RLS, and without demanding the gut wrenching (for me) introspection of meditation. Getting onto the ARP has made me aware of some things. Firstly the grief of the last 4 years is massive and I'm not over it. I'm also terrified of getting a little bit better and then being thrust out of the system only to fall over and go through it all again. I had given up all hope of being well. It's so stirring to think I might get well - I swing from exhilaration to despondency. Big plans, to realising that nothing has helped in the past - or at least nothing has made a permanent difference. I've got slowly worse over my adult life. I'm operating at about 25% of what I might at the moment in my own estimation. It's very early days. I suppose deep down I do want to be well, but I'm terrified (really fucking terrified) of failing again. I was just coming to accept my situation - I'd stopped struggling so much, and was calmer. But now it's all up in the air again and I feel very anxious about it.

Modern Maladies

The medical profession has scored some astonishing successes in the last 150 years with the eradication of many deadly diseases, and advances in treatments which save lives everyday - one of the main things, of course, was hygiene and especially hand washing, but I don't want to be too cynical about that because I'd be dead without it.

However alongside this amazing success in treating pathogenic or physically-traumatic problems they have been abject failures to treat the so-called modern maladies: depression, anxiety, psychosis, chronic fatigue/ME, and my own malady fibromyalgia. Many more 'syndromes' which are simply poorly understood vaguely defined collections of apparently unrelated symptoms have been named. About the medical profession's ability to deal with these I think we should be profoundly sceptical and even cynical. They are floundering. Part of the problem is that doctors have become enmeshed in the net of big pharma and often seem unable to think beyond the possibilities of offering some drug or other. Not only are the drugs for modern maladies frequently entirely ineffective at treating the malady, they cause side-effects which themselves can be debilitating and must often be treated with more drugs. At best we get some little relief from our symptoms that outweighs the short-term side-effects, but often the long-term side-effects are more serious (like kidney damage for me)

If you suffer from chronic fatigue, from fibromyalgia or even chronic anxiety or depression then I would recommend taking a look at the website of Ashok Gupta - a medical researcher, not a new-age snake oil seller. He has some very interesting insights into our problems, having suffered and recovered chronic-fatigue himself. I'd recommend signing up for his free introductory video series and taking an hour to watch the first series. If you don't think it's useful after that then you haven't lost anything.

Personally he had me weeping copiously to hear my difficulties described in such accurate detail, but for the first time accompanied by a rational explanation based on solid research. He offers a non-drug program of treatment which is not free, but it is something you can do yourself at home if you buy the DVD. I haven't started it yet, but his insight into the problem has given me more hope than years of doctors, drugs and psychotherapy and I'm excited about getting started on it.

Perhaps there is hope of a normal life after all. I'd given up.

Normality

The first year after stopping work was the worst. The paper work is incredible - and I could barely hold a pen! Not only was I getting and sending letters to my employer, but there were doctors, specialists (based in hospitals which create their own red-tape), the Job Centre (which is the front desk of welfare here), the Department of Work and Pensions, Her Majesty's Revenue and Customs, and The City Council. In each case a have a file an inch thick or more. I had to invent a filing system and be very careful to keep everything. I'm not a natural home filing person!

While all this was happening I was in incredible pain - often unable to hold a tooth-brush to brush my teeth for instance. As my Aussie friend remarked: "must making having a wank difficult!" [urm, yes...] I was also very anxious and swung into depression on a regular basis. I think I'd need a book to write about the various medications I've taken. I was quite lost in the UK system, though I'm not sure I'd have been better off anywhere else and I'm glad I don't live in the USA or India! Dealing with the pain, the disturbed mental states, the massive grief, and the bureaucracy nearly did me in at times. Though of course there are also positive memories of helpful and friendly doctors, and council staff; and of friends who rallied round.

But the over-all effect, looking back, was to create a full-time job managing my health and my connections with the system that was supposed to support me. This aspect of the situation absorbed almost 100% of my energy for the first year or so. Then there were periodic flare-ups.

When you are chronically ill there is a tendency to over do things on good days. It requires pacing, but when you've been at 25% for a while, and suddenly you feel as good as maybe 50%, you tend to forget the new limitations imposed and go for 75% which causes a crash. There are boom and bust cycles. For me the other route into pain is when I'm stressed and physically tense - fibromyalgia means that holding tension, even involuntarily, is painful! And I'm often anxious - any kind of conflict however minor seems to send me into flight or fight without my having much say in the matter! The pain flare ups used to really freak me out. I thought I'm never going to be any better than this. I'm more used to the ups and downs now. I have some long term impairment, some constant pain, but if I manage myself better, then it's all manageable. If I pace myself then my quality of life is OK. I have days when I don't take pain-killers, and I don't take other drugs. I also have days when I take a lot of pain killers, a little valium, and a lot of chocolate!

So this is normality for me. I've gone from being very active in many fields, to dicking about with some writing and doing reception 3 hours a week for a Buddhist Centre. My identify has undergone radical surgery - I'm not longer a musician, or a composer, or an artist, or a photographer, or even a worker: now and probably for the rest of my life I subsist on benefits.

Chronic Illness Leading to Being Fired

I don’t work because I'm in constant pain, and suffer from terrible anxiety and recurrent, often suicidal, depression. I used to cope OK but things just piled up. In 2006 I had 8 weeks off with fibromyaligia. I got back, but after 6 months I was in poor shape again and at the same time feeling anxious and depressed. In May 2007 I just had to stop. The first six weeks were sick leave. After that I was on statutory sick pay for six months.

'Work' were anxious not to offend me but completely inept when it came to this sort of thing. They had swung from a laissez-faire approach which resulted in several successful (and expensive) claims for wrongful dismissal, over to an officious and doing it by the book approach. They were of course reading the book for the first time, but were doggedly determined to do the right thing – i.e. make sure that I could not sue them.

After a year it was apparent that I was not recovering. My doctors could offer nothing except pain killers at the time - I was offered opiates at one point but turned them down! Like I need to add addiction to my problems! Antidepressants can help with pain as well, but the side-effects generally make life unbearable - they all send me to sleep. 10 years of amitryptaline nearly ruined my life and certainly cost me my marriage.

So I was called into a meeting. In an hour-long meeting they patiently went through the options explaining the details and the consequences of each. Then they told me that they’d already decided to sack me. Actually it was completely fair as I could not work. But the pretence of having options was a bit surreal, and it was an hour of bullshit I could have done without.

There was still some fall out from this as I rent my room in a communal house from the same charity. But that's another story.

So now I survive on benefits and feel embarrassed about it. I've become quite isolated over the last two years - certainly having chronic illness sorts out who is a friend and who is merely being friendly. Lately I've been doing some volunteering which is good - it gets me out of the house and meeting people. It was almost panic-attack stressful to start with, but I'm learning the ropes now and getting the hang of it. Three hours a week so far. Ironically the guy who trained me on the money side of my job has just been arrested by the police for stealing money and tools from the place. Everyone is struggling with being very angry and remembering that they are supposed to be compassionate :-)