Joined today

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Hello I’m auriel,I’m new I joined today I have fibromystupid I’ve had it a while .id like to talk to anyone who’s got it cos I don’t know anyone that does
 

femfatigued

Member
Joined
May 9, 2021
Messages
19
Reason
Undiagnosed
Diagnosis
00/0000
Country
US
State
FL
@Auriel Welcome! I am new here myself. I saw your replies on another post, but since I saw this one, thought I would reply here instead. I have not been diagnosed with fibro yet. I have been diagnosed with vestibular migraines and BPPV (positional vertigo). I've had numb legs/arms for about 10 years and recently got numbness in my face also. I have joint pain that sometimes I can barely roll over in bed because of the pain. I have tingling in most of my body, light/sound sensitivity, ear fullness and TMJ. I have lower back pain that sometimes is excruciating, but usually a shot of toradol about every 3 months keeps most of the pain away. The fatigue is what probably bothers me the most. I also have severe depression/anxiety that was amplified when my mom died in February. I was suffering from severe insomnia, but the past few months I have been sleeping way more than anyone should. That's all I really feel like doing. What are your symptoms?
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
I got Tim too I get burning pins and needles up and down my legs they feel like they’re shaking inside sometimes numb hands and feet lower back pain too the fatigue is horrendous yeah trauma and stress will make it 1000,000 times worse .im always googling to see if they found a cure yet
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
I meant t.m.j , i dunno who Tim is (spell correction I’m new to smartphones)😁 I get migraines too loads sometimes they make the left side of my face + hands go numb and needles too
 

Jemima

Active member
Joined
Jul 30, 2020
Messages
91
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Hi Auriel,

What a beautiful name!

We're all here for you, so feel free to vent, ask questions, etc. and have a poke around - there's tons of useful info here in the forum. Glad you're here!
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Hi jemima,thankyou, your name is a cutie pie too,I’m not used to people being there for me so this is new,I’m not sure how much I’m allowed to say/ask but I read some of your posts and I have the same mine gets worse from stress and triggers from things that happened mine started after I was terrorised by someone with n.p.d.i know trauma can start it among other things.
 

Jemima

Active member
Joined
Jul 30, 2020
Messages
91
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
Well, I guess keep in mind that this forum is public, but I think you can talk pretty openly here if you want to! I'm so sorry that you went through that - you're definitely not alone, even if the support here comes in digital form. Trauma can really take its toll on our health, and fibro is so complex; it's quite the journey to tease it apart and figure out why we end up where we do. But sharing and connecting with others dealing with similar challenges definitely helped me - I hope it helps you too.
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
It’s nice to just connect with people who understand what it’s like, have you ever a experienced people thinking you just don’t wanna do anything or can be bothered , I have.
 

Jemima

Active member
Joined
Jul 30, 2020
Messages
91
Reason
DX FIBRO
Diagnosis
11/2019
Country
PT
I work from home, and my partner's really supportive - he's really seen how much pain I've endured at times - so in a way I've been lucky. The main issue I've had with others is them constantly assuming that I must be better by now. It's really tough, but I've found I really have to spell out to people what I'm dealing with for them to grasp that it's a big deal and that it's not going away. If I explain it really matter of fact, they seem to grasp it more fully. It is so counterintuitive - but it's necessary! I'm sorry you've had to face that - every time I sense someone doubting me it really stings, so if you've had that from people close to you then you are a total warrior 💪
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Oh that’s so sweet I’ve got bit teary now . No my family’s never been supportive there’s an empathy defecit on my mams side of the family like passed down behaviour a lot of cluster b personalities I don’t really like telling people in case they think I’m the same as them but I’m not nowhere near.
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Auriel, many of us have faced the disbelief, and it can range from something you just blow off to something really hurtful if it comes from a person you thought you could trust.

I have gotten to the point that anyone who accuses me of exaggeration or making something up is immediately booted from my life unless they can promise never to do that again. It's just too much of a stressor and a drag on emotions and energy, and makes your life worse, so any time you can just remove someone like that from your life, it's wise to do so.

If you can't remove them, then don't engage with them on this topic at all. Don't bother trying to explain yourself to someone who has no compassion and won't listen or believe you. Save your energy for you. I mean this very seriously.

Here, we understand. No one here will accuse you of just not wanting to do things or of making anything up, because we have been through this ourselves. the most important thing is to take good care of yourself and to start doing things that will help you to manage this. And stick around, because we want to help. You can ask anything you want and say pretty much whatever you need to, just bear in mind as Jemima said that this is a world-wide public forum, so you probably don't want to say anything that will identify you, and personal information is usually best left unsaid.

I hope being here will be helpful to you.
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
Yeah I’m not giving out any personal information .in case the people I’ve gone no contact with find me and bother me again , I understand the forum is for helping and to learn from others with the same but I’d like to know them as people too , not just the illness they’ve got. That’s ok is it?
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
And yes I like it here lots
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,280
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Yeah I’m not giving out any personal information .in case the people I’ve gone no contact with find me and bother me again , I understand the forum is for helping and to learn from others with the same but I’d like to know them as people too , not just the illness they’ve got. That’s ok is it?
Yes, of course that's OK. :)
 

Auriel

Active member
Joined
Jun 8, 2021
Messages
54
Reason
DX FIBRO
Diagnosis
08/2006
Country
UK
State
UK
That’s good cos being on the Forums’s made me happiest I’ve been all week
 
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