Pleased to say and also an easy way to explain Fibro

[Winnie123xxx]

hey all

I think this is my first post on here, but for a couple of years I have taken great comfort from you all that post. It’s made me feel less alone and also that I’m not going mad! 😂

Anyway I’m pleased to say I was researching Fibro for links to send my family to explain the condition more etc, but I noticed today that all articles are sounding a lot less condescending and making it out to be a psychological disorder. It seems as if it is more recognised and accepted, finally!!

I not sure if you guys have experienced a lot of drs mock you, or not believe you or tell you it’s a mental disorder or you can just tell they don’t believe in it. But I have consistently come across that, so it’s been nice to see reporting on the condition is more accurate and established,

lastly if anyone struggles explaining the condition to people I have found the best way of doing it by saying it’s when a big trauma happens to you either physical or psychological, and your brain can’t cope with it so it shuts down but when it switches by lack on its faulty. It malfunctions. The nervous system controls everything in your body, right down to your toes. So you brains is sending out all the wrong signal that you have no control over and unfortunately it’s irreversible. People may not understand because there’s no specific blood test but we all don’t understand it either. So we just have to adapt and pace ourselves.

hope that’s helpful, probably not 🙈😆 but I just thought I would share all this with you guys and also thank you all for being my unbeknownst to you but my strength xxx

Ps gabapentin has been the most useful for me and having a massage stick !

[KimiJay]

Sounds intuitively reasonable, Winnie. The actual 'switching back on' after prolonged stress bit is what is a new thought about it all for me. How come the possible significance of that very specific aspect has been missed or discounted? - There is some other stuff being researched alongside the other similar conditions like cfs etc that I've read about elsewhere on an American website, but early days still so a bit tantalising. Be as well as you can. 💐

[Winnie123xxx in reply to KimiJay]

I don’t know if this actually happens but I would imagine your brain probably short circuits and then can’t return to how it used to be. I just find it the easiest way to explain and get a general understanding of the condition or how it came to be. ❤️

[KimiJay in reply to Winnie123xxx]

Some very positive responses to your post Winnie. It very much feels like the brain does kind of short circuit after a trauma of some sort. - I've read some stuff about the brain stem not working right too. There has been some research so lets hope for even more focussed research in this whole area. 🙈

[Marchhare7]

Hi Winnie, what a fabulous post, thank you so very much, im going to save it for use later, I feel the same im starting to see the chinks of light when you are listened too and people recognise what you're dealing with. Lets hope this can only improve with time, education and us continuing to advocate

[Yassytina FMA UK Volunteer]

Hello, thankyou for your informative post, it’s always good too read posts, share information and generally have a chat in this massive Fibro club of ours. I have met a few doctors that have been helpful and clued up on this condition and others that do not really have much too say. I am glad the medication is helping as well xx

[Lillylilac]

Thank you Winnie123That is so simply put. I will be using that.

Thanks again and I so hope you are feeling okish today.

Sending comfy hugs

Lilly xx

[HippoChick888]

A great explanation that non-medical people should understand. I'm not on here a lot, but find great comfort in hearing others' stories. We're all wired a bit differently, it seems, but many symptoms and experiences are the same or similar. Thank you for posting. So encouraging! 🥰

[Uellow22]

Hi Winnie123,

Thank you for this post it resonates with me. I am going to add this to my little fibro folder.

May I ask in which way Gabapentin helps you please?

I agree with you that this forum is a wonderful source of support, lucky to have it.

Take care of yourself.

Yellow22

[Winnie123xxx in reply to Uellow22]

Well it’s calmed my restless legs down omg the pain I used to be in I was like a cricket rubbing my legs together to try to sleep. I think it’s toned down the sensitivity of my nervous system in most ways. But I’m still quite bad, like I’m not having a good day today with my skin stinging 😓

hope you’re ok 😘 and sending gentle hugs your way

[Uellow22]

Ok thank you, very helpful.

Very sorry to hear about your stinging skin, it sounds extremely uncomfortable.

Take good care x