Kitz Forum

Chat => Chit Chat => Topic started by: Black Sheep on September 10, 2018, 08:23:40 PM

Title: Fybromyalgia
Post by: Black Sheep on September 10, 2018, 08:23:40 PM
Hey Kitz ...... a pictorial representation (from that friend of mine), highlighting the depths this thing can get to !! Not nice.  :(
Title: Re: Fybromyalgia
Post by: kitz on September 10, 2018, 08:48:50 PM
Cheers - Sparkler Burns is a new one on me.   I describe it as like electric shocks  :D

They also forgot the acute stabbing pain that will appear out of the blue and make you fall flat on your face & unable to get back up again until it subsides.
That is why I'm currently covered in bruises and have a deep gash and scrapes from where I hit something on the way down :'(
Title: Re: Fybromyalgia
Post by: Black Sheep on September 10, 2018, 08:55:45 PM
appear out of the blue and make you fall flat on your face & unable to get back up again until it subsides.
That is why I'm currently covered in bruises and have a deep gash and scrapes from where I hit something on the way down :'(

You sure that's not vinoalgia ??  ;D ;D

In all seriousness, as mooted many times before ..... it sounds damned horrendous. I shall be very selfish and hope I never contract this. 
Title: Re: Fybromyalgia
Post by: kitz on September 10, 2018, 09:09:02 PM
>> You sure that's not vinoalgia ??

haha  I wish!   :drunk:

tbh..  I've said several times to friends or people that I'm with, that I am fearful that bystanders will automatically think I'm drunk if I stumble and fall.
It doesn't help if you're having a Fibro Fog day and your brain forgets most of the words you wish to communicate.   I'm sure your friend will be able to identify with this.

It's one of the things that deters me going out sometimes and why I will use a shopping trolley even if I only want a pint of milk. 
Hospital gave me crutches, which are frickin useless as my hands & arms are often too sore, but I've recently been given a stick which has a moulded palm shape handle which is much better.
Title: Re: Fybromyalgia
Post by: burakkucat on September 10, 2018, 10:15:03 PM
Paresthesia and neuropathy I know well.  :'(
Title: Re: Fybromyalgia
Post by: renluop on September 10, 2018, 11:56:12 PM
My daughter, 50 with kids 19, 15 and 10 has been diagnosed, finds life very hard with it. it seems also associated in her case with gut issues. Eldest has ME/CFS.

Le Fanu wires Fibromyalgia in today's Telegraph. Apparently some argue it's psychosomatic, but it seems some get relief from medicinal cannabis, which, Le Fanu suggests, tends to disprove the theory.
Title: Re: Fybromyalgia
Post by: kitz on September 11, 2018, 01:16:30 AM
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finds life very hard with it

It's certainly life changing :(   Diagnosis is difficult and can take a long time.  I also have the added complications of arthritis, spondylolysis and ulnar palsy so those took priority for a while, but when I started having difficulty with vocabulary and remembering certain things, my daughter grew increasingly concerned.   I had tests which ruled out dementia & Alzheimer's, but it was so frustrating that some days I just couldn't read anything or remember which words to use.  I quite often say its as if someone has cut my vocabulary in half.   It's even more annoying to know that in the past I could just soak up knowledge and remember numbers no problem.   

It was the Neurosurgeon who when looking at MRI results for spondylolysis said he suspected I may have also FM, but it was outside their specialist area and I'd have to be referred to Muscular Skeletal for diagnosis.   Up until then I'd never really heard of FM.  When I saw the MSK consultant, the diagnosis was immediately confirmed.
The really hard part is getting medication right.  Some of the pain killers have caused havoc with my digestive system... and I didn't do too well on Gabapentin - I think I was off my head a lot of the time - but they swapped that to Pregabalin which is suiting me better and at least gives me some respite from RLS if nothing else. 

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but it seems some get relief from medicinal cannabis,

It is something I have only just started to research.  All I'm really aware of from others on the FM groups is the H&B version isn't strong enough for MS & FM as its too dilute.  :/