The Aword

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A Word from DocSarah
This web site aims to raise awareness of arachnoiditis by contact with other health professionals in various specialties, improve recognition of the condition, find better ways of managing it and reduce the number of avoidable new cases. We aim to inform people with the condition in the hope of improving their understanding and thus help them manage their lives with arachnoiditis. I do not give individualised medical advice, and I do not promote any specific treatment.

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1.Muscle Twitching
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4.Difficulty Swallowing (Dysphagia)
5.Pins and Needles
Survey 1 Survey 2 Forum

Chest Pain

Arachnoiditis has thrown me another curved ball this past week or so: chest pain.

I’ve had lots of different chest pains over the past few years and managed to explain most of them to myself anatomically/physiologically but this one had me flummoxed and forced to temporarily suspend my identity as a person and become a patient in A&E.

My previous chest pains have included sharp knife like ones with chest infections (pleuritic), shooting ones which prevented me taking reasonable breath (neuralgic related to thoracic spine), burning after shingles,  inflammatory breast pain (mastalgia) and pain from tablets getting ‘stuck’ (towards the back of my chest). This new one is really very odd, comes on as a sort of gripping in my left chest, when I pee.

So, as I always advise people to get new persistent pain checked out, when it came on at 03.20 last Tuesday and was still there by 0900, I went to get checked out. No, it isn’t cardiac, my ECG and blood tests are fine. My GP reckons it’s gastric, as I have a history of stomach ulcer so I am now on omeprazole, but to be frank I am not convinced
that is what is going on.

The best idea I can come up with is that my neurogenic bladder/bowel are throwing up this odd pain and so it is just another arach. oddity.

The irony of last Tuesday was I was meant to be lecturing junior doctors on Medically Unexplained Symptoms (MUS) and there I was with my very own MUS. I think the A&E staff reckoned that I am simply a nutty shrink!


Pain Project

I am working with Bristol PCT on a project to improve pain assessment and management in residents of nursing homes who have dementia. Pain in dementia is underestimated and causes severe and prolonged suffering.

The National Dementia Strategy includes pain and end of life care as some of their targets for improved services. The PAIN (Pain Assessment in Nursing Homes) project aims to educate nursing home staff and provide a new simple, objective assessment tool that will hopefully be very usable and therefore widely used (currently use of assessment tools is sporadic at best).

We have run a pilot survey of staff to see what level of experience they have and what they think they need to be better at recognizing pain: a large number said they wanted more training and even more asked for a new assessment tool so hopefully we will give them what they are looking for.
After a number of education days, we are going to audit the use of painkillers and also look at other sedative drugs that may be being over-used at present to treat difficult behavior in patients who in fact are acting like that because of unrecognized pain.

I am really hoping this will be the start of something that will spread further: I’m a member of the British Pain Society Pain in Older Adults SIG (special interest group) so will be liaising with other members with that purpose in mind.



Waxing Lyrical about Lyrica?


Many thanks to those of you who have emailed to let me know your experiences with Pregabalin (trade name Lyrica). The results are mixed. Some people do seem to get a degree of pain relief from it, although often at high doses (max 600mg a day), but others either find it ineffective or have side effects such as feeling sleepy. It doesn't seem to cause the weight gain and difficulty thinking that Gabapentin does, but I have come across some people who have found they get very irritable on it, not like their normal selves.

Lyrica is supposed to be helpful for sleep and anxiety as well as for pain. Overall, again, it suits some people but not others.

So I'm afraid Lyrica is no wonder drug. It does have its uses and it is certainly worth a try, for nerve pain and/or difficult sleeping/anxiety. But, like all medication, it is no panacea. I must admit, given how complex chronic pain is, I don't foresee any single drug ever being the answer, but the search continues...


PS. If you decide to stop taking Pregabalin, you must do so gradually (get medical advice!)



An engineer's point of view...

My hubby (an engineer), who is the first person to admit he sees things purely as a layman, has a refreshing take on arachnoiditis. Following our stay in Chambery and his conversations with people attending (doctors and patients), he has become an ambassador for the cause, often advising colleagues and acquaintances who have back trouble to steer clear of spinal injections and consider surgery only as a last resort, otherwise, as he puts it, the body will get 'annoyed', have a reaction causing lots of scar tissue that puts pressure on the spine and nerves.

His opinion on epidural blood patches for dural puncture is similarly down to earth - he thinks it's entirely bizarre to stick a needle into what he calls a 'hydraulic system' , lose fluid through it and then try to inject blood into the same hole.

A simplistic view, no doubt, but it kind of sums it all up in a nutshell!


Descriptions of pain

Descriptions of pain:

Having had chronic pain myself for over 30 years, and preparing talks and articles for others with pain, I am always on the lookout for descriptions that resonate. Here's one I've found recently, in "Belong to Me" by Marisa de los Santos.

"I wanted to say something about pain. Because even though I had absolutely no use for it at the time, and, in fact, would have traded minor body parts to be rid of it...pain turned out to be instructive deep, I named it "a wilderness of pain". ...I won't describe it in detail, mainly because I can't. For much of it, I was pretty out to lunch (a very bad lunch served by small red imps in hell.)...The important part, the part that would matter afterward, was how small I became at the end, pain paring off parts of me until I was all but gone, a tiny black comma on an immense white page. Fear went, then intelligence, worry, courage, and charm...Complex emotions evaporated. Humor vanished as though it had never been. My every neurosis went up in smoke, along with most of the English language...Yes, pain is abominable, a nightmare, but pain reveals, when we've had to throw all else overboard, what is left in our personal sinking boat."

Have a good week


The pros and cons of air conditioning

The pros and cons of air con...

Had a lovely holiday in Majorca, sun, sea and sangria and managed not to get stung by  jellyfish this time!  Back home to grey skies and rain!

One snag though, I have had to see my dentist as I have face-ache: turns out it's not my teeth, it's my sinuses. It's a re-run of my hubby's recent problems which he had after a couple of work trips to Dubai and Abu Dhabi.  I think the combination of the recycled air on the flights and the air con in the bedrooms is the root of the problem.  I suppose swimming in the pools/sea might also be a factor, but I think air con is the prime suspect.

So whilst it's tempting to ramp up the air conditioning for comfort during the night, beware the side-effects!

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