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RobB

New member
Joined
Apr 18, 2017
Messages
2
Reason
Relative
Diagnosis
00/0000
Country
AUS
State
Queensland
Hello fellow sufferers. I am new to this site. This is my wife’s story and my involvement.
“The good news is that it’s not going to kill you. The bad news is that you will have it for the rest of your life.”
This is my wife’s latest diagnosis by a leading pain physician in Queensland Australia. He didn’t sugar coat it but it didn’t come as a shock, confirming something we knew since way back. We were consulting him to see if he could offer any new treatment.

Unfortunately, when we first started doing the rounds of physicians some twenty- five years ago the medical profession generally considered the symptoms of non-specific joint pain, pins and needles, sudden unexplained stabbing pains, fatigue, sleepless nights, memory issues, mood swings and lethargy with either cynicism or confusion and put in the too hard basket.

Some medicos in the early stages ventured the opinion of chronic fatigue, or repetitive strain injury, again conditions that were not recognized at the time by many.

Subsequent visits to rheumatologists, physicians, doctors specialising in body toxins, a psychiatrist/ pain specialist using hypnosis, a pain clinic programme, physio and neurologists for brain scans, to negate amongst other things, physical signs of Alzheimer’s) had us running around in circles.

That’s not to say the doctors did not try to help. It’s easy to blame doctors, but we tend to forget that medical science does not have all the answers and coupled with a feeling that they must do something we ended up getting more confused, frustrated and depressed.

Drugs wise we went from, oxycodone, fentanyl patches with paracetamol for “break through’ pain, then Cymbalta, Palexia etc. All had their downsides and none of them were suitable for constant long term use. Some had strange hallucinatory effects.

To cut the proverbial long story short we have managed to wean off the opiate based medication and whilst doing so incorporated regular walking exercise, regular check-ups with a very understanding GP, and with his endorsement (and that of a neurologist) my wife is now using some less harmful medicinal options. So, fingers crossed. I am mindful of the effects this condition has on the partners of those suffering this disease. It can be as frustrating for the partner. We have good and not so good days. Some things we have also found useful are regular exercise. I’m not talking gym workouts or marathons, but regular walking. It has helped my wife and as a by-product also keeps me fit. Activities that can take your mind off the pain – even things like puzzles and reading. Sense of humour helps and we watch and read a lot of humourous stuff.

I know it’s hard – but laughing is a medicine! I could go on, but this is my final comment. My wife has a very positive attitude towards the condition and does not see herself as a victim – just someone by chance through no fault of her own has this illness. In fact it never ceases to amaze me that whenever we are out and see someone who has some obvious physical or mental disability her first words are “look at that poor soul”. If anyone out there has any other tips for coping please let me know. Happy to share experiences. Apologies for any typos Regards, Rob.
 

Peaceandquiet

Active member
Joined
Apr 17, 2017
Messages
97
Reason
DX FIBRO
Diagnosis
04/2017
Country
AU
State
East
Thanks for sharing that, Rob. Your wife is lucky to have someone to genuinely share the burden. I have only recently been diagnosed after many years of having FM and not knowing what it was. My husband is trying hard but hasn't yet got the level of understanding that you do and that is frustrating for both of us. Your message is uplifting in regards to positive attitude and humour being important.
 

RobB

New member
Joined
Apr 18, 2017
Messages
2
Reason
Relative
Diagnosis
00/0000
Country
AUS
State
Queensland
Thanks for sharing that, Rob. Your wife is lucky to have someone to genuinely share the burden. I have only recently been diagnosed after many years of having FM and not knowing what it was. My husband is trying hard but hasn't yet got the level of understanding that you do and that is frustrating for both of us. Your message is uplifting in regards to positive attitude and humour being important.
No probs. Thanks for your reply. Notice you are in NSW. Do you know of any Fibro support groups on the Eastern seaboard? There is one in WA but obviously too far away for us. However I have subscribed to their newsletter. It may be of interest to you or others
 
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