It’s 3am and I can’t sleep. It feels as if a mobile is vibrating intently and relentlessly in the middle of my chest, I can hear my heartbeat pulsating in both ears, my right arm feels heavy and numb like it’s anaesthetised, my head is pounding with migraine, my wrists are burning and my right ear feels like it’s filled with water.
For 8 days my rheumatoid arthritis has been raging without treatment because I had to stop Sulfasalazine last Friday due to raised liver enzymes and low white blood cells. This was devastating because my joints actually felt better and I felt less like a zombie due to the extreme fatigue and brain fog that has returned with a vengeance. I won’t see the consultant for another week so have to live with all these unpleasant sensations and cloud of pain and exhaustion til then.
One of the reasons I have insomnia (apart from the untreated RA) is that almost exactly a year ago, 5 September 2012, I had an extremely rare, severe allergic reaction to hydroxychloroquine sulphate involving hallucinations and broncho-spasms over 2 days. As it happened around 2.30am, I keep getting flashbacks to that time and that exact feeling that I was going to die comes flooding back. It took months but I was finally diagnosed with Post Traumatic Stress Disorder and Health Anxiety on top of Rheumatoid Arthritis and Ehlers-Danlos Syndrome. I recently started therapy for the PTSD and hope I can manage to banish it soon.
Dealing with RA is tough and depressing in itself but for some people (and unfortunately this has happened to me three times with Disease-Modifying Anti-Rheumatic Drugs) the drugs have scary side effects. It is frustrating that there isn’t just one treatment that suits everyone, rather than feeling like I’m taking a gamble each time I try a new drug. Right now I’m just going to try and relax, listen to classical music (Mozart in particular has a calming effect) and will try once more to sleep.
Before December 2012, I’d never had a migraine before. Yes, I’d had headaches, but never the kind of headache where your temple throbs, you have stabbing pain behind the eyes, it feels as if you’re going deaf in one ear and when you blink it’s as if camera flashes are going off. And numbness all down the right hand side of my body. Little did I know that the numbness would be permanent and I’d have the migraines nearly all the time.
Four weeks before the first migraine (where I ended up in the Hyper-Acute Stroke Unit as at first doctors were unsure if I was having a stroke) – I started having Methotrexate injections as a treatment for Rheumatoid Arthritis. Although this medication had started to reduce the swelling in my left wrist, I felt sick all the time, had diarrhoea up to seven times a day, my hair started to fall out (not dramatically but it became much finer and I was losing more than usual), and I had skin rashes on my chest (leading to a visit to Accident & Emergency). I also developed a lung infection and took antibiotics for it.
The question is, could the Methotrexate injections have been a trigger for the migraine and permanent numbness? Would I have developed these problems anyway? Are you more likely to get migraines if you have Rheumatoid Arthritis or Ehlers-Danlos Syndrome? I’ve just had some Neurology tests so hopefully these will give some answers. Til then, I deal with it by keeping busy and drinking lots of water.
For the past few months I’ve been having regular physio sessions at hospital. Because I have Ehlers-Danlos Syndrome Type 3 (hypermobility) on top of Rheumatoid Arthritis, this means my legs and arms are more bendy than most people’s. Plus, apart from chronic pain throughout my body, my back feels ‘floppy’ as my core stability (if that’s what it’s called) isn’t great.
The first time I went, I was given a back brace which I wrapped round my lower back. It looked strangely like a corset. Amazingly, as soon as I put it on I found it easier to stand and move around (normally it takes so much effort just to stand still). Wearing it has also helped alleviate lower back-pain. It’s easier to wear out and about in winter than the summer as I prefer to wear it under my clothes than on top!
When it comes to the exercises, I always want to push myself harder. So the physio will ask me to lean against a wall and slide down to a 45 degree angle, rather than 90 degree angle, and hold the position for a few seconds. Another exercise I’ve been doing while making herbal tea is ‘gluteal strengthening’ – in other words, clenching the buttocks. Also walking backwards, sliding each foot along the floor. Using a bottle of shampoo in one hand and conditioner in the other instead of weights to exercise the muscles in the shoulders (deltoids) and arms (biceps and triceps). These are just some of the exercises I’ve been doing. Although at first it doesn’t feel as if it’s achieving much, I know that cumulatively it’s starting to work as I feel like I have more strength in my muscles. Not sure if there’s a definitive way to measure that though.
One hazard of sliding up and down the wall and holding the position is that if you’re wearing blue jeans (or anything with a strong colour for that matter), it will rub off on the wall. This happened when I stayed with my sister for a few days and her boyfriend noticed a vertical mark in the sitting room, saying: ‘What’s that blue line?’ I was mortified as I suddenly realised that was due to my exercises! Luckily we all saw the funny side and it came off easily with water. I’m looking forward to seeing which exercises I’ll be trying next, as I find it helps distract from the chronic pain as well as there being something slightly comic about the whole situation. It really is a laugh or cry situation when you have multiple chronic health conditions, and my mid-year’s resolution is definitely to do more non-medical things and have more fun.