Fibromyalgia and now Diagnosed with e... - Fibromyalgia Acti...

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Fibromyalgia and now Diagnosed with early onset of Dementia


Hello all my friends on the best website and forum going. Fibromyalgia for quite a few years and enduring the pain from it and chronic pain syndrome. Sleep apnoea for 20 years plus and for the crushing news that I have Dementia. Nobody knows how long my jigsaw will eventually finish being disassembled and the lid goes back on the box for good. Because of the possibility of the variant and type of frontal lobe dementia I might have endured it for years. It normally starts with behavioural changes and doing things that is out of character for you. You might be very religious but the signs are that you start to challenge the existence of a god, stop going to church and go to the pub instead. Start swearing and indulge in extramarital affairs, spend lots of money that you might not have and steal to support your new found lifestyle. You might end up shop lifting and then get a police record. No not the 80's pop band but the real thing!

Your speech becomes laboured and you mispronounce words or totally forget words at the start, in the middle or at the end of a sentence. This makes for a problem with communication for say, Because the disease starts as young as 45 years of age or in some cases even younger you might have children at home. Relationships fall apart and divorce ensues. As the disease progresses. Many more things start to develop like MND (motor neuron disease), becoming unable to put any sentence together, or speak and become mute.

If you need any further information on Frontotemporal dementia one of the best sites to read up on the condition is

I shall leave you all to think about what I have just relayed to you, with hope you will never get it. Best regards Oldman1952.

14 Replies

Life's a B***h sometimes and so unfair

I hope you have been put in touch with support groups near you

We never know what life has to throw at us but no one expects so much as I say life's unfair .

Take Care



I am so sorry.

So sorry oldman1952 that you have been given this diagnosis. As if Fibromyalgia isn’t bad enough to be getting on with.

The best advice that I can give you is to get involved in as many support groups in your area that you can. Get your family involved too.

This might not seem important now, but as time goes on, these groups are invaluable as they have been involved with you from the beginning. Also, they will give you and your family a break, or maybe respite care.

I don’t know where you live, but each area will have Dementia Support Groups. Start with your GP or practice nurse. Or just Google Dementia/Alzheimer find out what’s in your area.

You must be in shock at the moment, but we’re all here in this forum to support you. So keep coming on and let us know how you’re doing.

Kind regards.


Thank you Greenpeace and everyone else. There we go again, forgetting names that I have just seen. I can be playing poker and am still quite good at it but I cannot even remember the last 2 cards that I was dealt if I fold them and they disappear off the screen, also out of my memory. Absolutely hopeless. :-{


Sorry too hear this heart gos out too you.sorry I can't offer any advice,but what Greenpeace has saide is good advice take care x


Hi there life stinks doesn't it thankyou for posting that information it will help people I'm sure. May I ask is old man 1952 the year you were born ??? Do you have much support from family or buddies you play poker with ????

Really sorry about your news - that must be devastating. I've no advice that others haven't already given, but am feeling for you. Xx

I am so sorry to hear your bad news - it must be devastating - its the thing I fear the most. I am sometimes not sure if my fibro fog is not early onset of dementia. A minute ago they mention a name and then I have already forgotten it wanting to use it. It is always only names - so frustrating. I am your age 1950 - my heart goes out to you. How about eating a lot of coconut oil - it is supposed to be helping a lot - Dr. Mary Newport - google it. Our brains are made up of 85% fat and do not need sugar but fat to perform. I like the taste, but keep forgetting to eat it haha. Ginkgo Biloba is good for blood circulation into the brain - just stop taking it if you are going to have an operation - it is blood thinning. They very recently had the Alzheimer Convention USA online and it was fascinating to listen to - very impressive. One could buy the series, but I live in Namibia Africa and the exchange rate is horrendous, but I listened to it while it was free .

A big,big hug xxx

So sorry Oldman that you have been hit with this news. I have to say your post is so articulate humorous and structured that I woukd never have guessed that you had this disease.

I'd never heard of this kind of dementia. I had a granny with Altzemiers and a mother with vascular dementia.

How did the diagnosis come about ? Did you notice behavioural changes as you describe.

This on top of your fibromyalgia and chronic pain is a cruel blow

Best wishes


Sorry to hear this, I hope the symptoms stay at bay for a long long time.

Life's very unfair at times and makes no sense.

I hope you have people around you that can help all the best

Hi it's something that ive been thinking about has do many of the things you describe plus know about along with recognise from a couple of people i worked with that went to have it and many of the things they used to do earlier back then before any of us knew i display them.

Ive also had a what we beleive to be a small stroke

I know get lot's of memory issues(like a book with pages missing)! and get very agitated quickly over things ive also asperger's but there all inter linked anyway

Another thing also with Asperger's is many are TG or TG's have asperger's something i found out which my team knew about and Altz is in there also.

It's a bit like the quigee board with all there hands on the glass pushing it this way or that way with the brain! slight bit this way or that and all sorts happens

I'm so so sorry to hear your news Oldman. Big hugs xx

Hi there, I have just read your post, how are you doing now? Like you, I have had chronic pain for years, then fibromyalgia and I too have recently been diagnosed with early onset frontal lobe dementia, so I know what you are going through. Life isn't fair and I feel like I've copped the lot-almost half my life has been spent in severe pain and now my brain is going! Never mind, we are not the only ones it has happened to, although this is of little comfort, we are not alone.

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