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.


6 thoughts on “Insomnia

  1. I feel your pain. I have to take sleep aides to be able to sleep and sometimes they don’t help. I have EDS and a variety of sleep disorders, bipolar, and arthritis. None of those help you sleep. And of course when you don’t sleep pain is especially worse the next day. Do you take any sleep aides? I take Amitripyline, it works really well. Of course sometimes I still have issues but compared to everything else I tried it has done it’s job. I hope things improve for you especially your pain and sleep.

    • Hi there, sorry I didn’t see this before – I don’t take any sleep aides at the moment a) because I’m very sensitive to medication (keep having allergic reactions & bad side effects) and b) as I’m about to start another treatment for arthritis and want to see how that goes first (Humira). Thanks – I hope things improve soon too! Glad to hear Amitripyline has worked for you.

  2. Pingback: Insomnia | HandiCapable

  3. Pingback: PTSD milestone | 30somethingwitharthritis

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