New Member Speaks

[Coolbleweyz]

Hello. My name is Fawn. I am 69 years young, and retired. I am married and have one son who is physically disabled. I have had fibro for quite some time now, and try to handle the pain without meds. I have been on Fentanyl, Hydrocodone and Flexeril. I quit all of them. I am also Bipolar. The thing that bothers me the most is that people think that fibro is a "made up" condition.😥

[rosewine]

Welcome to the community Coolbleweyz . Yes unfortunately as there is no blood test that can prove we have fibro people seem very disbelieving that it is a true illness. I wished they could spend just one day in our shoes and they wouldn't be so disbelieving. X

[M0AL61 Moderator Volunteer]

Hi Coolbleweyz and a very warm welcome to the forum.

Unfortunately because people can't see fibromyalgia (like the way you can see a broken arm etc), they tend to think we're making it up, or we can't possibly be as bad as we say we are.

If you go to our main website at fma.org you will find a lot of useful information. x

[Fra22-57]

What a lovely name.Yes it's an invisible illness really unless you limp and then someone will ask if you have hurt your leg.It effects people in different ways and different strengths.They say it can be caused by stress or after an accident etc.With an autoimmune disorder you tend to collect others like I have.We try and cope in our own different ways.You do well without meds.

[Vixen04 in reply to Fra22-57]

Hi Fra22-57, you're right, Fibro is a Central Nervous Disorder, usually caused by early childhood trauma. The trauma doesnt cause the fibro but its the suppression of the emotions over time. Anything from sexual/physical/mental abuse, bullying or a death of a loved one. Over time you don't talk about what's happened, just file the feelings away. Then comes school and you may get bullied or bullying is continued from nursery but again you don't really talk about it. Same for high school, Uni has mega stress - don't talk about it. Then you get a job, yeah but there's this one colleague who's always on your case, making snide comments and talking behind your back but you can't say anything, your just started the job, what will people think! Going back to the early childhood trauma your fight or flight system is on, adrenaline running through your system. If you think of all of these things I mentioned earlier (and I could add so many thins but we don't talk of them) as a jug of water and each time something happens water is added to what's already in there. It will eventually overflow. In the body this is when the fight or flight system breaks and gets stuck in the "on" position meaning we constantly have adrenalin rushing through the brain and body. This is when fibro usually presents itself. The researchers have identified the broken connection in the brain and are close to working out a fix, but if not a cure. I was told this by my Professor of Rheumatology who is heavily involved on the research side also

That was when thins made sense for me as I had beed sexually abused from aed 5 to 11. The individual (step dad) stayed in my life and home till imoved out and nobody knew apart from my Gran? I have two brothers and they still don't know 39 years down the line. Others know and that feeling of a bit of weight coming off my shoulders is amazing. My point is that it can be a big thing or a small thing but if we don't all about it, and then all the other things life throws at us and we don't talk then the central nervous system just can't cope as it thinks it's still in f/f mode & doesnt know to switch off. We're also normally alpha types)(hence not talking about things) & we're also "yes" people who have to learn to say NO, I'm glad to say NO is my new favourite word without justifying why I've said it. Simply, I "No I can't do that". Took me a long time. Anyway, sorry for the long post but hope it helps some people. Also remember I said "usually", it can happen to people who don't have any of the things I've mentioned.

Take care & stay safe xx

C x

[Fra22-57 in reply to Vixen04]

fibromyalgia and more auto immune diseases didn't start til my Mum died 10 years ago.I had a happy childhood but after events in my life were bad.You think you cope ok and carry on and yes I agree you store them away til illness erupts it all.I am so sorry what you experienced.Some of my children were groomed and abused by a family friend who was then jailed.I could write a book about the crap life and yet funny n loving too but that's private to me.

[Vixen04 in reply to Fra22-57]

I’m sorry you’ve had such a hard time recently. Like I said it’s “usually” childhood childhood trauma but there’s always exceptions I hope you’re getting the right support & that it helps. Fibro just sucks!! Claire x

[42mar in reply to Vixen04]

bless you and Thankyou, spot on,❤

[JayCeon in reply to Vixen04]

Hi Vixen - I realize where you're coming from (partly here too), but I prefer to say *sometimes* trauma and *may be associated* with the central nervous system. I don't think research has anything like enough results yet to be that conclusive, and we fibromites do vary so much, especially in this...

[Vixen04 in reply to JayCeon]

I agree about the wording point but I’m lucky enough to have a consultant who is a research professor and they have identified the part that’s gone wrong and basically need to find a way to reconnect the pathways that are broken so they are getting there we just don’t know how long it will be until they figure it out. Hopefully within a few years we will have a cure.

Ps my Prof was awarded a CBE for his contribution to the research in rheumatology. What they are doing is trying to find a way to get gene deep to identify individuals issues and give the appropriate medication. It’s fascinating!! Xx

[JayCeon in reply to Vixen04]

Interesting and wings hope! Can you share his studies? As "chance" ;-P wd have it I'm going to an earlier psychologist of mine, who I'd consulted a few times to see if my traumata are OK, which they were. And I've had success intensifying my autogenic training. Suppressed feelings, adrenaline - yep! *sigh*

[Vixen04 in reply to JayCeon]

Hi JayCeon,Absolutely his name is Proff Iain B McInnes based at Glasgow Royal Infirmary. He’s fantastic and the work he’s doing is unreal! Glad things are heading in the right direction for you. Claire x

[JayCeon in reply to Vixen04]

Hi Claire, Had more surprising really big success for 10 days now with GABA (+glutamic acid+passioflora+Mg) btw.... hope at least some of it'll stay and it's providing further food for thought even if it doesn't. I've had a look at your doc's stuff: yep, sounds really great for rheumatoid arththritis.

However the only connection I can see to fibromyalgia is cytokines, which I don't think that many researchers are convinced of yet, altho they're on to it, which to me doesn't mean that that is really a missing connection. Interestingly/strangely, there's a "FM/a test" by EpicGenetics in the US based on measuring cytokines and chemokines which claims to be a 98% safe fibro-test and costs 1000$...

So I'm not at all sure what he sees as the missing connection or the almost-fix he told you about...

There are 5-6 hypotheses that still need loads of research, if you look at the studies in detail, and it's not that they are ignoring us, so it's good to hear hopefulness from the inside view!

[Welshcatlady]

Good morning Coolbleweyz and welcome to our group. It is disheartening when others don't believe us when we mention Fibro and all it's problems. You will always find a sympathetic ear in this group. xx

[Yassytina FMA UK Volunteer]

Hello and welcome, yes indeed the lack of understanding still from doctors and people still amaze me , a good forum to come and chat here with lots of empathy and understanding. Xx

[Mille21]

I totally agree this group really helps you some times doubt yourself and think am I imagining it thanks everyone xx

[harmony2]

@Coolbleweyz. A warm welcome😊. Sorry I am slow and intermittent on logging in and replies. Im sorry to hear of the very out of date opinions you are receiving

I think to do some reading like @M0AL61 suggested would be comforting but I found in the past it was hard to assert myself when I had received a disbelieving gut punch. Now I challenge people more (trying to be respectful). Other times it can be a healthy choice to spend limited energy on friends who understand our or something you know is a priority.

Good decision investing in a healthy place here 👏🏽👏🏽👏🏽