Another thing????: Ok so I’ve got fibro... - Fibromyalgia Acti...

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Another thing????

Edenstar profile image
16 Replies

Ok so I’ve got fibro and my doctors are concerned that I might also have ms xx

Now I’ve come to terms with this but yesterday my mother gets a letter from her neurologist stating she has a rare genetic disorder which has given her CADASIL and that both my sister and I have a 50/50 chance of having it too!!

For anyone who doesn’t know this can cause anything from headaches, migraines and confusion to epilepsy, strokes and dementia/alzimers 🤦🏽‍♀️

Does anyone know where I can get a refund for my body??? As I swear this one is defective!!!😂

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Edenstar profile image
Edenstar
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16 Replies
johnsmith profile image
johnsmith

Life is for living now. You are now in a place where you are going to have to take stock of what is important and what is not. It is time to seek spiritual guidance from the religious traditions that you feel comfortable with.

Spiritual guidance issues are not something that is mastered in 5 minutes after speaking with a spiritual person it is something that is wrestled with and can take months to come to an understanding with yourself. I personally would not touch psychiatrists or counsellors. I have a bias in this matter. But you are in the situation where the authorities may want an opinion before they give you the help that you may need.

Movement helps prevent bad mental attitudes get too deep a hold.

I wish I could give a better answer. Hopefully other people on this forum can bring their useful experience to bear and add it to mine.

This youtube video may be useful.

youtube.com/watch?v=_IFvabl...

Edenstar profile image
Edenstar in reply tojohnsmith

I’m not religious in all honesty xxx I just joke about myself and life xxx that’s the only way I can keep going xxx

johnsmith profile image
johnsmith in reply toEdenstar

Thanks for the reply. I do not know what being religious is. I just use the Buddhist techniques because they work for me.

Edenstar profile image
Edenstar in reply tojohnsmith

I looked into that a while ago xxx I’m just unsure even where to begin xxx

johnsmith profile image
johnsmith in reply toEdenstar

You say: "...I'm just unsure even where to begin". This was difficult for me to answer. I learnt in a group with face to face instruction from a Buddhist monk following a talk. I just did it. I had my first instruction 40 years ago. I just fell into doing it because it was there and I was interested in psychology etc. The talk was advertised locally. So in my case there was "no unsure where to begin". In your case you are told it is recommended and you do not know how and where to begin. It is the right approach. You open to investigating to see what happens.

It is nice to be reminded that what is obvious to me because I have followed a particular path over a number of years, is not obvious to a person who has not engaged with certain things. Over the years I have practised I have learnt many things and changed many of my mental approaches not always for the better at the time. The nature of meditation and mindfulness is that it always gives you opportunities for learning about yourself and the more you know about yourself and the way you function the greater control you have "on the slings and arrows of outrageous fortune".

In your local area that are probably Buddhist groups you can make contact with. There are no demands on what you believe. There only demand is that you engage in a meditative practice which they can support you with.

The practice is about doing and observing what happens. You are not trying to achieve because trying to achieve prevents you from learning. There is the youtube video and other talks from the monk. Just try it for about a couple of minutes at a time. And when you are comfortable with a couple of minutes try it for 5 minutes at a time.

The whole thing is doing. It does not matter if you do it right or wrong. You gain experience.

Hope I have been able to be helpful

Great your keeping a sense of humour that's what u have to do don't worry about ms or other conditions until u have a diagnosis the fear of not knowing is the absolute worse it was for me I thought I had ms or Parkinson's but it's fibromyalgia it took a year of waitting in turmoil u will be ok Hun and what ever it is your deal with it but focus on the fibromyalgia diagnosis because that's facts everything else is what if xxxx

Edenstar profile image
Edenstar in reply to

I refuse to give up my sarcastic sense of humour xx my family deal with all serious events with humour xx I think I would go crazy if I stopped xxx

Tootiepie profile image
Tootiepie

Oh Edenstar what a time you are having !!! Still you are keeping your sense of humour which is SO important.

At this point in time you have one definite confirmation of FM. The others are possibles, I would say try to keep positive and try not to worry until you have something else to worry about.

I am so sorry to hear about your mum. I hope this will be a very slow progressing condition for her and that she will live a long and essentially normal life.

I was tested for MS several years ago. I think some of the FM symptoms were showing even then. You never know - it could be the same for yourself.

Sending you all a big hug and lots of positive hope for the future.

Edenstar profile image
Edenstar in reply toTootiepie

I know right??? I swear whoever has my voodoo doll better stop playing with it🤣

Edenstar profile image
Edenstar

Thankyou Everyone xx

My sense of humour is the only thing my fibro and god know what else in the future cannot take away from me xxx worse case scenario m going to be in bed with coffee medication and just taking the Micky it of myself because let’s be honest with the pain and stress anxiety and depression we all suffer with ..... there isn’t much more any of u can do 😂

In years to come there will be a few retirement homes just filled with sarcastic witty funny old people😂

The younguns aren’t going to know what hit them🤣

Treewade profile image
Treewade

Lol i can empathise it seams my mum passed all her bad genes to me lol hopefully if my kids get them they ll continue to blaim my mum n not me lol. Xxxxxx

Edenstar profile image
Edenstar in reply toTreewade

My kids Will probably blame my mom aswell🤣🤣🤣🤣

angiesmith50 profile image
angiesmith50

Hi I too have fibro and thought I also had ms but it's Function Neurological Disorder, which is also the nervous system and the brain. Good luck with everything. Take care x

Edenstar profile image
Edenstar in reply toangiesmith50

Thankyou babes xxx you too xxx

Skylane2 profile image
Skylane2

DO NOT WORRY! The stress will make you sicker. You still have a 50/50 chance of NOT having CADASIL -my doctor is always trying to give me diseases I don’t have! First it was psoriatic arthritis when that didn’t work, she convinced me I have rheumatoid arthritis because I have the “markers” but, I don’t have the symptoms So, now we have to worry about this new Corona virus! It’s always something! I’m sure your body will survive and you’ll be posting soon that your doctor was overly worried ! it makes me mad when they upset us with “ OMG “you might have MS and let you go home and have a panic attack over the “supposed” illness

Edenstar profile image
Edenstar in reply toSkylane2

Agree I’m probably worrying over nothing xx I’m sure my doctor isn’t trying to worry me but I do understand where you are coming from xxx there is always something for us to worry about 😂

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