Teenager's and Fibromyalgia

[Sezza123123]

Hi has anyone's teenager got Fibromyalgia or has anyone any experience of this, my daughter is 14 and for the last 8 months she has had really bad lower back ache and has said her whole body is just aching she is always tired, she struggles in school with work as she finds it really hard to take learning in, it's not just in school time etc she finds it hard even in school holidays etc she is still the same but it's really starting to affect her day to day life now could this be Fibromyalgia or has anyone experienced anything like this? Thanks

Is your daughter very flexible, (double jointed) ie bendy fingers and thumbs, can do the splits, touch the floor flat handed without bending her knees?

Yeah we do all of these things anyway but it doesn't seem to make it any easier, it's hard to not think of speak about it when it's happening daily, she doesn't have any trouble getting up for school she goes in etc fine she just struggles with social interaction and learning the work in school etc

She used to be when younger but not as much now

Have a look at hyper mobility spectrum disorder and Ehlers Danloss. (It runs in my family). There's a thing called the Beigton or Beignton score to do a quick check for it. It can cause these symptoms and it can run alongside autism.

Ankylosing spondylitis can cause lower back pain, just in case it's useful.

Was also coming to say suggest this. Any dizziness, fainting, feeling light headed? Autonomic dysregulation is also related to EDS (eg POTS) and can lead to fatigue/brain fog.

As a teen I had lots of the same symptoms. Generally unwell. Dismissed by GPs. Parents thought I was being dramatic. Continued into adulthood. Diagnosed with hyperparathyroidism. General bloods never tested for this over the years. Now have Osteoporosis in my late 30s due to complications. Fortunately / unfortunately 3 major breaks in 2 years lead to further investigations.
Hope you get some resolution.

I agree. And I naively did exactly this many years ago. Although the GP dismissed my symptoms at the time I was diagnosed with fibromyalgia 4 years later. I still don't know what is actually wrong! I'd hate to think of a young person being fobbed off with this diagnosis too.

Wow people have been rude on this thread implying she's just making it up. My dc was diagnosed with ME a while back. They were ill and just never got better basically. Had lots of bloods done over a period of a few months and then were eventually referred to the ME clinic who did a couple more bloods then diagnosed. Certainly not because it was suggested by us either. The GP suggested it after bloods kept coming back clear and they couldn't find a cause. We were hoping they'd find the cause and could fix it!

Thank you 😊

My DD had similar symptoms and was eventually diagnosed with hashimotos thyroiditis.

there are a lot of diseases that only really become apparent in the teenage years.

most teens might moan about school but if well they are keen to be up and about and doing the stuff they enjoy.

op, my DD was diagnosed with me/CFS and fibromyalgia before we got a second opinion privately through my husbands medical insurance which measured thyroid antibodies and spotted what was up.

she is on meds for life as her thyroid has burnt out (and she bitterly resents her dad who spent two years calling her lazy for not trying to get out of bed).

there’s a lot that could be going on. Unfortunately fatigue and widespread pain are symptoms of a lot of things and it can be a very long journey to work out what is going on.

advice:
get her on multivitamins anyway (it can’t hurt)
has the GP checked for:
vitamin deficiency
iron deficiency
glandular fever (there is a test to show whether you have had it and it’s common to be very tired for months afterwards)
thyroid hormones - TSH and T3 and T4

As Someone with fibromyalgia this really irritates me and is a very ableist comment. Using phrasing like "umbrella term" and "doesn't mean anything" is so bloody rude and shows your arrogance. Fibromyalgia is a real condition leading to disability. Just because we don't know the cause, doesn't make it fake.
It is a condition in its own right and lots of research is suggesting autoimmunity being the route cause. Please be mindful of your uneducated comments before making them

If you're satisfied with that as a diagnosis that's up to you. I personally feel I've been fobbed off and have to manage with taking Zapain and naproxen. I'm definitely not uneducated in the matter, quite the opposite. It's a fact that fibromyalgia is given as a diagnosis when tests can confirm nothing else. Not sure how you've come to the conclusion I'm rude and arrogant.

I'm 54 and developed fibromyalgia after having glandular fever aged 12. So definitely wasn't tired from overuse of mobile phones or lack of exercise etc. I remember crying in the middle of the night and describing the pain as if my blood was hurting me because the pain was everywhere. It took years to get a diagnosis and yes, I get very annoyed by ignorant people who dismiss it as nothing etc, having had it for over 40 years it's definitely not nothing. I sincerely hope your daughter hasn't got it but please don't give up on finding out what is wrong. I was extremely fortunate that my parents believed me and knew I wasn't faking pain, exhaustion etc, their support was possibly the most important factor of me accepting the illness. The lovely rheumatologist who dealt with me for years sat me down and explained he believed it was a disease like so many others but that it just wasn't known about yet (remember this was in late 80's) and that he hoped eventually it would be researched properly. Mine went into remission while I was pregnant but unfortunately returned with a vengeance after my dc was born, I was advised at 26 to not put my body through another pregnancy and I fully believe that decision was for the best. I now need strong pain relief to get through each day, I stay as active as possible but had to retire in my mid 30's. Keep following a reason for how your daughter is feeling, just knowing you believe her will help more than you realise.

I'd look at autism in girls as this has many auto immune issues run along side due to masking burnout.

Pots Fibromyalgia ED stomach issues endometriosis thyroid disease to name but a few.

And 12/14 is prime age to notice due to changes in social life's meaning masking is much much harder and hormones.

I started experiencing widespread chronic muscular pain at 13-14 and was diagnosed with fibromyalgia at 18. I found going to school and university was the worst- sitting in class was awful, pain management as an adult is easier as you have more agency to manage the pain as you need to.

my pain kind of stopped when I was pregnant and it hasn’t really come back to any significant degree. I probably had about 4-5 bad flare ups per year before and I’ve probably only had about 2-3 since I got pregnant. My kid is now 9! The only advice I have is to continue to encourage her to exercise when she can, and try to find movement that she enjoys. Before I was diagnosed I was seeing a neurologist who told me to stop exercising (was about 16 at the time) and I never really got back into it. It’s been my biggest regret as an adult as it’s so much harder to redevelop an enjoyment for exercise after a long break, even more when you have chronic pain x

I wasn't really thinking of any actual diagnosis I just wanted to know if anyone had experienced anything similar, my daughter is a healthy weight, eats healthy and does exercise etc she has only had these symptoms for the last 8 months or so and nothing in her usual routine etc has changed and she does get parental guidance and encouragement when needed thanks 👍

I came down with chronic fatigue and pain in my teens quite suddenly. Was told CFS, then fibromyalgia then found out myself in my fifties I had a genetic fault causing a particular disease. I won't out myself by saying what. It's rare and unlikely to be the cause for your dd. You have to ensure they've tested thoroughly. Going private can help hugely. I'm not medical but things I'd want ruled out are vitamin and mineral deficiency, EDS, POTs, auto immune things, thyroid tested (including antibodies), arthritis, AS, Lymes to name a few. I hope you find an answer.

I think that’s a bit unfair. Plenty of people - like me- who go on to have chronic autoimmune issues that aren’t diagnosed until young adult stage (common) really start showing symptoms as a teenager and it’s very hard to get taken seriously. I am 44 now and I have Addisons, lupus, hypothyroidism, interstitial cystitis, Sjogrens and pituitary issues. My first diagnosis wasn’t until I was 23 (hypothyroidism) and the rest came after that BUT I was very unwell as a teen - constant stomach aches, just feeling so unwell, very poor quality of life. I had no energy for socialising and did very well in school because I was bright but the motivation just wasn’t there because I felt so ill. I was sleeping in 3 hoodies and 3 pairs of socks as well as pjs because I was cold all the time; I’d lie on the floor because my stomach would hurt, I’d sleep till 2pm and feel exhausted. No amount of walking / swimming / fresh air / whatever else would have or did make any difference. My bloods were “normal” for years, until they weren’t but as many people with autoimmune issues know the “normal” is fairly narrow and many feel awful when they’re told they’re okay. I now look back and know I was unwell for many years before being formally diagnosed.

Please try not to be so dismissive of young people and their health.

Thank you 😊

Thank you this sounds so much like my daughter at the moment expect she struggles at school as well