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.
DocSarah

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 Surveys

 Forum

1.Muscle Twitching
2.Neuralgia
3.Prognosis of Arachnoiditis
4.Pins and Needles
5.Difficulty Swallowing (Dysphagia)
Survey 1 Survey 2 Forum


Pre Xmas rush

Pre-Xmas rush..

I’m afraid I can get a bit Scrooge like at this stage, when shopping seems to be more like battling with marauding hordes of beserkers than something people talk about as ‘retail therapy’: that sort of therapy sounds like having a Japanese lady walk up and down your spine: makes you wince! Actually I did have that done to me once, when I was 18 and shared a room in France with a lovely Japanese girl called Sachiko. Surprisingly, the manouevre didn’t hurt at all!

Best to hit the shops early to avoid the crush though...

 

Deep Freeze

Deep freeze


How are you enjoying the snowy weather? Where I live we’ve been quite lucky, we’ve only had minimal snow although we have had some sub zero temperatures: enough to get us to move our freezer out of the garage into the conservatory: last winter it stopped working because  the ambient temperature was too low: despite it theoretically being a freezer designed to cope with temperatures as low as -15°C! We couldn’t figure out why our ice cream was melting!!

I must admit when it’s this cold, I feel a bit like the freezer...

 

A to Z

The A to Z of drugs that jerk you around

Someone recently asked a question on the forum about symptoms that sound like myoclonus: very painful muscle spasms. As many of you will be aware, myoclonus can be a symptom in arachnoiditis. However, there is something else we need to consider: medication. Basically there are many drugs, from Aspirin to Zoloft, that can cause myoclonus, and if they are in combination, then obviously the risk is substantially higher.

For instance, Gabapentin (Neurontin), which many people with arachnoiditis take, is a culprit, as is Pregabalin (Lyrica). Lyrica in particular can be a problem if taken at the same time as opiates, especially Oxycodone (or Oxycontin). SSRI type antidepressants such as Prozac (Fluoxetine), Sertraline and Paroxetine are also potential causative meds.

If you are experiencing these awful symptoms (the spasms are excruciatingly painful) I would advise you see your doctor and ask about whether your medication could be the problem rather than the solution, because all too often I suspect the way the symptoms are treated could be making the problem far worse not better.   

 

Warning on MMS

DocSarah's Warning on MMS


I’ve just watched The One Show in BBC1, UK which had a feature on Miracle Mineral Supplement (MMS) produced by a man called Jim Humble who touts it as a cure for pretty much everything that can ail you, including cancer! However, earlier this year the FDA in the US issued a warning about this product, which, when prepared as per instructions, makes chlorine dioxide aka bleach!  There have been no reported deaths from use of MMS; however the FDA has received numerous reports of nausea, severe vomiting, and life-threatening low blood pressure caused by dehydration.

DO NOT TAKE THIS PRODUCT!

Similarly, be extremely wary of ‘cures’ found on the Internet: always check with your doctor or post a message on our forum and I will look into it for you.

 

Celebrities in Pain

Celebrities in Pain


I have just found out that Neil Diamond is a long term sufferer of back pain as is his partner Rae Farley. Diamond underwent back surgery for a benign spinal tumour and has endured 30 years of pain since.  Other famous people with chronic pain include singer Paula Abdul who has had a 25 year battle with pain and has RSD. Actress Melanie Griffith has pain since a car accident.

ABC news reported on the pain experienced by Jerry Lewis.  Actress Kathleen Turner is known to have rheumatoid arthritis and comedian Jim Carrey battles with chronic back pain.

Several years ago, in the US, there was an exhibition entitled “The "Many Faces of Pain" photo exhibition, part of a national tour paying tribute to the 50 million Americans who live with persistent pain.

Celebrities featured in the exhibit included Lynda Carter (actress in Dynasty), Bo Derek, Olympia Dukakis, Mia Farrow, Tony Randall, and Christopher Reeve.

On this side of the pond, actor and comedian Nigel Planer has experienced debilitating chronic pain, and has endorsed patient information leaflets entitled "Chronic Pain - Take Control" which were aimed at patients attending GP surgeries. Elizabeth Taylor broke her back 4 times and also had a benign brain tumour removed.

Clearly, pain is no respecter of fame and fortune!

 

Body Clocks

Messing about with our body clocks


Usually I don’t mind it when the clocks go back. I kind of enjoy the darkening evenings (and loathe getting up in the dark, my body and mind just mutiny on the grounds that it is uncivilized!) and the extra hour in bed on the weekend of the change is nice. But this year it seems to have wreaked havoc with both me and hubby: we are both still waking up at the crack of dawn (or earlier) and wiped out by 9 in the evening. I’m really not convinced that we need to mess around with the clocks, even the 3 farmers in some far flung Scottish isle (who we are told are the reason we need to change) can’t really see much of a difference can they?

Short extract to help explain the importance of questionnaire's diverse answers. Click here

 
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