What's the youngest to be diagnosed? - Fibromyalgia Acti...

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What's the youngest to be diagnosed?

Vicki081108 profile image
33 Replies

I am very curious if there's any correlation between ages and diagnosises...

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Vicki081108 profile image
Vicki081108
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33 Replies
chellshock profile image
chellshock

Im 29 and was told this year

Vicki081108 profile image
Vicki081108 in reply tochellshock

It's so tough isn't it? Is your case a severe one? X

chellshock profile image
chellshock in reply toVicki081108

It is very tough, im unsure it hasnt been said but i know the level of pain is not nice at al

Vicki081108 profile image
Vicki081108 in reply tochellshock

Are you getting support from your family, friends and doctor?

chellshock profile image
chellshock in reply toVicki081108

Family and friends are supportive. And am getting support from rheumy and GP. What about yourself?

Vicki081108 profile image
Vicki081108 in reply tochellshock

My friend Jo is amazing and has been researching it all-seems like every time I see her, she has something new to tell me about fibro. My partner has ra so he understands the pain levels etc and he has been dealing with that for 3 years and is only 28. My family help me on my bad days. And my doctor has been pretty good so far. Sat in the waiting room now as I've reached breaking point-so may have a dif opinion when I get out lol x

chellshock profile image
chellshock in reply toVicki081108

Its good to have people around you who support you. What meds are you on? Let me know how you get on with the doctor. Always here if you need to chat x

Vicki081108 profile image
Vicki081108 in reply tochellshock

Thank you, app went well but now have a complete change of meds so not even sure what they are til I pick them up. At what point do the referrals to other services start? X

chellshock profile image
chellshock in reply toVicki081108

What services do you mean? My go referred me to a rhemuy before i told out and it was the rhemuy who told me.x

Vicki081108 profile image
Vicki081108 in reply tochellshock

So do you still have to see a rheumy? X

chellshock profile image
chellshock in reply toVicki081108

I still see mine :) x

Hols15 profile image
Hols15

I'm 26 and was told a few weeks ago

Vicki081108 profile image
Vicki081108

I'm sorry to hear that. How have you been coping? X

Hols15 profile image
Hols15 in reply toVicki081108

Pacing is very hard but also been told that they think I'm to young to have meds but am thinking about going back to the doctors for something else for the pain. The good thing is at the hospital I'm under they have there own fibro clinic so I am (I know it sad to say it) but excited to meet the specialist there. How u coping? X

Vicki081108 profile image
Vicki081108 in reply toHols15

Not coping isn't really an option in my situation as I have three young children. They and my partner are my world, and it may sound sappy, but I'm drawing my strength from them to keep getting up each day, when to be perfectly honest, I just want to lie there... X

Lucyhobbit profile image
Lucyhobbit

I was 18, which means I've now lived more of my life with fibro than without it.

Vicki081108 profile image
Vicki081108 in reply toLucyhobbit

Oh my goodness-I'm so sorry to hear that. I think mine started around 23-and I thought that was bad enough! Are you getting help? X

Lucyhobbit profile image
Lucyhobbit in reply toVicki081108

Back then (20 years ago) most people didn't believe it existed so not really, I've just learnt to deal with it in my own way. Now that I am older I find that actually talking to other people about fibro is very important for me. I keep finding new things I didn't realise were fibro related which is really helpful.

Allpainedout profile image
Allpainedout in reply toLucyhobbit

I can relate to you lucky hobbit , I've had fibro 14 yrs and I have had to deal with it on my own ! I'd tell family how ill I felt my mother inlaw would just tell me she was worse than me & she was OLD so I should get over it ! My sister used to listen to me say all my problems and 2 yrs ago she had small stroke and had lots of pain so some dr ( she can't remember who !) has said she has fibro type pains and all of a sudden she knows how to say the name ( she used to make silly attempts at the word fibromyalgia !) & what's worse she's telling ME about things she's read about. trigger pains and all sorts !!! It's really hurt me Hasnt she herd a word I've said for years ??? As if I didn't know what pains us fibromites have ?!!!! I feel so low about it she's treated me like I've made it all up !!! But she's ill !!! I would like to think (I know !) if it were me who was newly ill with fibro the first thing I would have said to my sister would have been HOW HAVE YOU MANAGED ALL THIS TIME ??? But not a word !! This has knocked me side ways so I really understand what not being believed feels like !!!!

Vicki081108 profile image
Vicki081108 in reply toAllpainedout

I have a mother in law like that... Hopefully this will make you laugh (and not offend anyone!) but mother-in-law is actually an anagram of woman hitler! Mine has arthritis so of course, her pain is so much worse than anyone else's, and always will be. She carries herself like a martyr and accepts help from no one. I don't know about you, but having only had a diagnosis for a couple of months now, I'm still struggling with a bit of bitterness at the pill I've now got to metaphorically swallow, as my gp has told me all the stress I've been under lately, is prob what has triggered off the latest horrible stage of fibro-and is what drove me to get a diagnosis. The only reason I'm a bit bitter about it is because my "dad" and boy do I use that term lightly-and mother in law, have caused me so much stress and heartache in the last 4 months it's unreal. Maybe if they hadn't of put me in those situations, I wouldn't have flared up in quite such a spectacular way? Does anyone else get that? X

Lolis profile image
Lolis

I was diagnosed when I was 16, I'm now 27.

Its been a long haul, and I fully expect to have fibro for the rest of my life

I know what you mean about rheumatology departments, when I was going to be diagnosed it was me and a waiting room full of people in their 60s/70s/80s

They did look at me a bit strange, a lot of curiosity

Vicki081108 profile image
Vicki081108

You sound as though you have been thru so much! I have nothing but admiration for how you manage to keep a positive attitude... How do you manage that? X

Vicki081108 profile image
Vicki081108

16?! Are you at a stage now where it doesn't affect your life too much? Really need some hope right about now...

Lucyhobbit profile image
Lucyhobbit

Always have hope - despite my diagnosis I went to university for 4 years, and taught in primary schools for over 15 years. Adaptations were made both as a student and as a teacher to make sure I could still work for most of the time. The reasons I'm no longer working are not fibro related. There will be good days and bad - and everyone here knows all about them because we've been there. *hugs*

Vicki081108 profile image
Vicki081108 in reply toLucyhobbit

Thank you so much for your encouragement. There's nothing like someone offering a glimmer of hope to you, when they KNOW what challenges we have to face on a daily basis... Xx

Midori profile image
Midori

I was 62 when I was (finally) diagnosed, although I can track it back to the 1970's, it first became apparent to me that something was wrong soon after my husband's death in 1991, when the fatigue started. Having been a nurse I had back problems, which were put down to work and lifting. In 2006 I had my gall bladder removed, quickly followed by Shingles, and it took me really having a go at my GP to get blood tests for Rheumatiod factors followed by Rheumy appointment to get a confirmation in 2010.

Vicki081108 profile image
Vicki081108 in reply toMidori

Isn't the relief amazing at finally having a real diagnosis? I was a nurse and I almost convinced myself at one stage that all my symptoms were in my head... How are you now? X

Vicki081108 profile image
Vicki081108

Thank you all for taking the time and energy to reply to my post. It's truly touched me how willing you have all been to share your experiences with me. X

holly2812 profile image
holly2812

I have it secondary fibro to RA. Ra diagnosed at 19 and now a year with fibro. It's more difficult to realise which pain is from which thing.

Vicki081108 profile image
Vicki081108 in reply toholly2812

That's just so young to have ra! My partner has ra too and he was diagnosed at 26. It changes very little if his life as he's sooo stubborn that he refuses to give in to it. He's been an amazing role model to me for how to carry on. Do you have lots of support? X

Samfa1984 profile image
Samfa1984

Hi Vicki :) Im 29 and was diagnosed about a month ago. After pain and suffering for so long with no answers despite various hospital apps, scans, bloods etc, I was starting to think I was losing my mind!! Im a nurse myself amd I just knew there had to be a reason behind it all. When I finally got the diagnosis, it sounds odd, but I was so happy to finally have a name for it! Now though, I just feel so low and scared about the future :(

As I mentioned, a nurse but I've been off work for 8 months as I work in an A&E and Theres no way I could have been doing my job. Im using crutches as most of my pain is in my hips/knees. I went back a couple of weeks ago to do office/admin stuff with my managers but they can only give me enough work for 6-8 weeks...after which I need to be fit for my nursing role or they will look to re-deploy me 3 paybands lower or medically retire me! Im 29, 7yrs into being a qualified nurse, and have done nothing but health/care work since I was18!! The thought of my career being over so young is devastating and Im not sure what to do :(

Hopefully we will both find a way of coping and managing our pain so we can get back to living again. I have to hope so xxx

AriQ profile image
AriQ

I was 12 when I was diagnosed, which is quite rare in the USA as only 3 million documented cases. It was hard to figure out and I still cannot take medication until I'm 18. I also cannot take medical marijuana as it is not legal in my state yet, only for severe autism cases in adults.

Mdaisy profile image
Mdaisy in reply toAriQ

Please can I ask how old you are ?

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