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.


Persisting migraine

I find it hard to believe that the neurologist discharged me last week. He has decided that my symptoms (permanent numbness down the right hand side, ongoing migraines) should be dealt with by his colleague in the specialist headache clinic. No reference to whether what I’m experiencing is due to being on methotrexate (MTX) injections last winter. (I’ve researched it and am totally convinced that this is due to the MTX as I never had migraines or numbness before December). The nerve conduction studies and MRI on my brain all came back negative which is reassuring but there is no sign that these symptoms are abating. He suggested trying Gabapentin once I have been on Sulphasalazine (trying to get the rheumatoid arthritis stable) for about 3 months. Frankly, having read the potential side effects, I am not feeling encouraged to try it, as I have a lot of those problems already (such as breathing problems, eyesight issues etc!). So, having been discharged from his clinic I have no idea how long I’ll wait to see the headache specialist. I saw her briefly a couple of months ago as an in-patient but that doesn’t count as I’m now an out-patient again. So confusing.

At the end of the appointment I tried asking him about Postural Tachycardia Syndrome (POTS) as I know lots of people with Ehlers-Danlos Syndrome have it, and that it could explain the low blood pressure, feeling dizzy, palpitations and so on. But he simply said ‘We don’t deal with POTS in this clinic’ and ‘These symptoms are troubling you. Have you considered cognitive behavioural therapy?’ before shaking my hand and sending me on my way. I was stunned to see that he had ticked the ‘treatment’ box on the yellow outcomes form that I had to hand to the receptionist as he had suggested that I take Gabapentin in 3 months’ time, not now, and it is rather misleading. I had mixed feelings leaving, from relief that I don’t have a sinister condition to frustration that the neurologist thinks these symptoms are ‘just migraine’ – permanent numbness and one arm being colder than the other is not typical for migraine. In the meantime, life carries on and I just take it day by day until the next health appointment.

Blood results

Finding out blood test results is always a rollercoaster experience, they are so unpredictable. Last time I had a chance to see my results the ESR (Erythrocyte sedimentation rate) and C-reactive protein (inflammatory markers in the blood) were within normal levels. This time, the ESR was slightly elevated at 8 – (normal range is 1-7) and CRP was ok at 1.0 (normal range is 0-5.0). My Vitamin D is now back to normal levels but I’m continuing to take 1,000 International Units a day. That’s some good news, at least.

Other results that I’m not so happy about:
Lymphocytes – LOW – 1.16 ( normal range: 1.2 and 3.65)
Thyroid stimulating hormone – HIGH – 5.56 rather than 0.27-4.20.

I have no idea what this means so will need to talk to the doctor and rheumatologist about it. Now that I have bone erosions in my hands and wrists, the rheumy wants me to try Sulphasalazine (I’ve already tried Plaquenil and Methotrexate, with terrible side effects). But the next appointment isn’t til September as I’ve got to have an MRI scan for the Neurology team. (They’re still investigating why I’m numb on the right hand side and keep getting migraines).

So, the old-fashioned treatment for rheumatoid arthritis is the next step while waiting to have the MRI test and the result. In other words, hand therapy. Does this mean a splint for my hands, exercises etc? Will be interested to find out. On the other hand, my doctor said that they won’t be able to refer me to the hospital for integrated medicine which is frustrating – and it means going there privately.  Seems unfair that there’s a health lottery in London depending on your postcode. I know that scientifically there isn’t much evidence for homeopathy, acupuncture etc being beneficial for arthritis but I’d love to try them.

Constant migraines

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.

Changing diet

A few months ago, I decided to radically change my diet. Why? Because I had a bad reaction to more than one arthritis medication (including one severe allergic reaction to Plaquenil /  Hydroxychloroquine Sulphate in September 2012). My mother had one friend, E, who had tried a special diet for over a year and had been told by her rheumatologist that she’d had a ‘spontaneous remission’. That was enough of an incentive for me to do something.I’d already cut out alcohol in summer 2012. Then in early December, I developed continuous migraines and permanent numbness down the right hand side of my body after being on injectable Methotrexate for just a month. A private migraine specialist suggested I drop chocolate, coffee, tea (all caffeinated drinks) and cheese from my diet. All things I love! Other food I stopped eating last December: dairy, anything with gluten, potatoes.

It sounds like a lot, but there are actually loads of things I can still eat, including: gluten-free porridge for breakfast with a banana, rice, lots of fish, particularly salmon and mackerel, tofu, loads of vegetables such as avocado, sweet potato, cucumber, beetroot etc, soya yoghurts, seeds such as flax and pumpkin, nuts, fruit (everything apart from citrus). I occasionally eat organic chicken but no red meat. I also drink one tablespoon of organic cider vinegar mixed with one teaspoon of honey in a small amount of hot water.

After just a few months on this restricted diet, I had blood tests done and two of the inflammatory markers (ESR and CRP – erythrocyte sedimentation rate and C-reactive protein) were back to within normal levels. This astonished my rheumatologist when I saw her on 1st March. I insisted I was feeling better (which I was, although my hands still looked inflammed). Despite this great news, I still had, and continue to have, active inflammation. This is clearly visible in my hands and wrists, and one wrist has a swollen bump between the wrist and hand, called an effusion.

Against medical advice (as the rheumatologist wanted me to try out another drug), I asked to put the treatment on hold til I’d seen the neurologist about the migraines and numbness. She reluctantly agreed, but said she’d scan my hands again with the ultrasound in June to assess the level of inflammation.

Although I realise that diet alone is probably not enough to have a remission, I keep E’s story in my mind as inspiration because I really want this to work. I know everyone responds to medication differently, but in my case the side effects / adverse reaction always seems worse than the benefits. So, for the time being I’m sticking with it.