* I've changed the blog address from www.sarahsworld.me back to the original (badly chosen, but I'm stuck with it) address of www.kiwikchat.blogspot.com .

This means that some links to older posts and old links from other sites don't work. :(

Saturday, November 26, 2011

Introducing the lovely Dr R.

So a few blogs ago, Mum and I went to see a truly lovely rheumatologist, Dr R.  

He was so lovely in fact, that afterwards we forgot to obsess over the health advice and instead we spent the drive home trying to work out where men like him come from.  Which planet? And how do you spot them in a younger form? 

But I digress and am sure that you would prefer to know what he said about me/cfs.

The main points were:

1. Vit B12 injections

These actually contain cyanide so don’t have too many, you can give yourself cyanide poisoning.  Oops, I hadn't heard that one before. 

(update - it only has cyanide in it if the name is cyanocobalamin, the one I prefer is called Hydroxocobalamin or Neo B12)

2. For neck pain:

He prescribed neck strengthening exercises (youtube), heat pack and slowly sitting up in bed with cushions rather than trying to make the leap from the bed to the recliner.

I guess this is my first brush with the dreaded deconditioning associated with M.E.

3. Codeine can make headaches worse.  

For some people (me) codeine is not tolerated well and you can become addicted. For me it actually causes more headaches from withdrawals. I was only taking 2-4 panadol forte a day but have since managed to cut back to one once a fortnight.  Seems I was caught in a headache/codeine spiral. 

4. Rituximab should only be used for ME/CFS in a clinical trial setting.
Dr R was totally up to date with the latest rituximab treatment research done in Norway and while he stated that he wouldn’t prescribe it for me/cfs he was quite encouraging about my wanting to take part in a clinical trial (if there was one).  That said, he also mentioned that even for people with Rheumatoid Arthritis, it doesn’t help everyone. 

Generally his comments about Rituximab for ME/CFS were optimistic yet cautious and he was clear that he wouldn’t recommend it unless in a clinical trial. 

5. In regards to GET:

“When your body is ready to get better it will slowly let you do more, until then all you can do is maintain it in the best state you can. Wait until it’s ready to let you improve.”

This was so nice to hear this as most doctors still suggest that I can gradually increase my exercise regime. However while in the middle of a slow decline, I found exercising really didn’t help.  I had to first find my baseline (it was hiding under the bed) and eliminate crashes.  I have painfully learnt that nothing and no one is worth a crash.  It's a very thin baseline but it does let me do some things which is better than nothing.

So I am to keep up my pilates régime, spreadsheet records and proceed with caution, waiting until my body lets me do more.

Finally after a long, thorough, unhurried appointment, I thanked Dr R and told him that he was the most informed and helpful doctor for me/cfs I had visited.

His reply was a bit sad:

I would never want to be known as a Chronic Fatigue Specialist because I have no help to give, no treatment to offer.  

So no magic cures, no promises and no list of supplements. 

Still it is comforting to know that I am not missing any tricks.

Sometimes just being listened to, taken seriously, understood and reassured is better than a prescription.

Disclaimer: the above is not meant to be taken as medical advice and you should discuss all health decisions with your doctor.


  1. I love your dictum, "nothing and no one is worth a crash." Painfully hard lesson to learn, as you said, but so crucial for us.

    He sounds promising. Great that he isn;t offering false hope, that he understands his limits. And it IS so nice to simply be treated well, and not be rushed, by a doctor (not big asks!). I'm very glad you found someone you can actually look forward to seeing again. Hope this first appointment is a sign of things to come. Lilith.

  2. I love this guy. We need more of this. We are not asking for miracles, just the truth and advice.

  3. that is a bit of a sad reply from him, but i really think people (doctors) underestimate how much they can help simply by affirming and persevering, and by sharing their knowledge and being compassionate. it can make an immeasurable difference. some really interesting information in there - great that he was up on the rutuximab. very impressed. and loved you and your mum getting 'distracted' on the way home!

  4. Heya LIlith, thanks for your comment. He was such a great doc, but I don't think I'll see him again for a long time because he said he couldn't really help me. But then again, his 'not helping' was the most help I've had from a specialist. If that makes any sense. :)

  5. So true Marzi. But a miracle would be nice...

  6. It was sad Kirsten, I think he wouldn't rule out seeing anyone with me/cfs, but would not like them to think he has any answers. I think affirmation that you are on the 'right track' and not going crazy with the weird signals from 'the body' is something we all need every now and again.

    haha, Mum and I were quite pathetic really. That said, I just realised I'll have to go back, I forgot to ask if he has any sons...

  7. Very interesting what he said about B12 injections! I take it sublingually 5000iu every other day. I hope the tablets don't have it?

    Codeine makes me go doolally, but my brother can take it. We both have M.E. But I knew about the addictive nature of the drug.

    Good post - and helpful!

  8. Hi Caro, I'm pretty sure it was just the injections, but it would be worth double checking that with your doc.

    Doolally...that's what it's called. :)