Any mid 20s fibro people?

[LJGTJH]

Hi , looking for some support and that I’m not alone

I am 26 on the outside i look healthy i am a size 8/10 sporty when able and i study at uni and have a part time job. However the symptoms are always there and it is a struggle to not just give up. I battle with pain/migraines and fatigue on a daily basis. I have had numerous symptoms since age 11, 2 years ago i got told it could possibly be fibromyalgia but since then i have had no support or a diagnosis. The GPs speak to me on the phone and just keep telling me to take my antidepressants and all my symptoms are common.

I have bad anxiety for years a flare up of IBS last year when i started uni and lost 2 stone. The IBS and Endometriosiswere linked, but since getting some endo removed and dietary changes these have somewhat improved, i often get joint and neck pain causing horrrible migraines. I have raynauds and often just feel over stimulated to noise and light. As these symptoms are something i have had for years the drs dont seem to want to check in and i feel abit isolated.

I am currently studying a physio degree and the 12 hours shifts have flared up my anxiety , neck and joint pain and fatigue.

I am currently on the waiting list for psychological therapies and wanting support on pain management. I feel so irritable and when the pain gets bad i go cold and tired then boiling hot my stomach hurts and sensitivity to light. I want to advocate for myself to get the support I need but i feel because i look and sound okay. Its always a case of ‘’ sounds like fibromyalgia’’ manage your symptoms. I dont want to quit my degree. But i am currently on 12 hour placements and as i dont have a diagnosis or support from GP i just feel like things wont get better. Is anyone my age in the same boat? The gas lighting by healthcare professionals is so sad. I feel as though to be supported more than a 10 minute appointment at the GP i need to actually look unwell!

[Hazel_Angelstar Administrator FMA UK Staff]

I'm older, but just wanted to say welcome to the forums. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications

Hopefully some of our younger members will be along soon xxx

[CM1EDSUK]

Unfortunately not in your age group, but as a long retired physio, I'd just like to wish you well on your path to becoming a physio. i also hope you get more support, & finally a diagnosis.

Do your own research, starting with the links already provided; it's hard, but you need to remain objective. Kindly let us know how you get on.

[Cat00]

I'm sorry I'm 45 not 26 but you sound incredibly similar. I have all your conditions each diagnosed after uni sadly so I didn't know why I struggled so much more then the other students.

At uni I had really bad IBS and floated around the 7 stone mark most of the time. My migraines and insomnia became chronic so I was having headaches/migraines almost daily. I have Raynaulds too.

I also had really quite marked anxiety and depression which I had since being sent to boarding school when I was 12.

The only thing that I had any treatment for was my mental health, everything else tooks years to be diagnosed.

I'm also very sporty. I do a HIT class everyday and do kung fu 3 nights a week.

My degree should have been 4 years, 3 with a foundation year, but I took 6 years to do bc I dropped out twice bc I got so ill. When I graduated I was 6 stone.

In the end the only way I could complete my degree was by getting a bedsit on my own and essentially living like a recluse. I couldn't cope with all pain and tiredness and deal with student style social lives. Everyone I knew was partying constantly, alcohol made me so ill I'd be broken for a week after. It was very lonely but at least I passed in the end.

By the time I was diagnosed I'd been living with most of my conditions for a decade or more. Initially I was put on a lot of pain meds, anti- depressants etc but ultimately found none of them worked.

I have a lot of meds for my migraines but don't take anything for everything else. GP's aren't able to do anything really. When I was 30ish I went to a "living with pain course" at my local buddhist centre. I was the youngest person there by about 20 years 🙄. At the time I didn't think it helped at all but now I realize it had it just took a while for me to absorb. I eventually got sent to a pain clinic when I was pregnant at age 38 but they couldn't do anything partly bc I was pregnant and also bc all the doctors I saw get disagreeing with each other about what was actually wrong with me.

How much of your degree have you got left?

[LJGTJH in reply to Cat00]

2 years left out of three , it’s the placement 12 hours it’s flaring up my pain migraines,I just feel so unsupported from uni as there’s no diagnosis just a yes sounds like fibro all test results normal. The GPS aren’t empathetic they’ve said refer myself to CBT and do yoga all of what I’ve tried to do

I’m awaiting for pain management/specific therapies to help

Sertraline and amitriptalibe did not help

Currently on proponlol and sumatriptan for migraines

So sorry to hear you struggled unsupported for many years. Was there a turning point where you felt more supported?

[Cat00 in reply to LJGTJH]

I've never been supported for fibro but I eventually got treatment for chronic migraines, once I found a doctor who believed chronic migraines could exist. So I'm on the CGRP antibody injector and before that botox. They don't always work but it feels wonderful to be heard and taken seriously.

I did have one GP who tried to help with my fibro, by the end of it I was on so many different meds the next GP withdrew all of them. I was a bit anorexic at the time and the drugs made me put on weight so everyone thought that was great, for me not so much!

I realized once I got over the withdrawal I didn't feel any better so I've never wanted to go back on any of them.

I think doctors can't really do much for most fibro people to be honest. But they can help with some of the comorbidities.

When I was at uni I got some "extenuating circumstances" forms that were supposed to help you get a more understanding look at your grades. I don't know if they still do them but obviously I had no fibro diagnosis then and they still helped a bit. I self referred twice for CBT and was told my problems were too complex and they couldn't help sadly.

I reckon if you hassle enough Gps you will get a fibro diagnosis esp. If your test results are all clear and that may help you get more help from your uni. 12 hour shifts would ruin me. It's hard trying to be normal when you're not.

2 years is a long time. If it's any consolation I dropped out but I did go back, it maybe you should have a break and go back when the doctors have helped/worked out what treatment you can receive?

[flicka]

You sound very sensible brave and motivated. I am 80 ! so not in your age bracket but it is a lonely journey but you will be in a position to know more and help others. Presumably you have been checked for Polymyalgia? x

[LJGTJH in reply to flicka]

No never for polymalgia they just said possibly fibro

I had my bloods done last year all normal other than anaemia caused by heavy periods/endo symptoms

They’ve said possible fibro but no further advice on if symptoms persist when to get in touch

You are so kind. My therapist suggested joining here as I’m facing an 18 month waiting list at the moment for CBT I try to be motivated but it’s frustrating not being able to do stuff without overdoing it x

[Badbessie]

My daughter 23 as just been diagnosed with chronic pain syndrome/fibromyalgia. She as a number of musculoskeletal problems in her back. I and my daughter have been fighting for answers /solutions for around four years. I presented her GP with a diary of events/symptoms covering a 30 day period. My daughter was then referred to see a rheumatologist. After various scans etc they two years later diagnosed CPS/Fibro but could not rule out PSA due to the strong family history. I insisted she be referred to the pain management team which we are waiting for. Basically you need to keep pushing them for referrals. My daughter as tried the medication route which did not help and pain management was one of the few options left.

[LJGTJH in reply to Badbessie]

Thanks I’m overdue a review over phone so will try to push to be listened too it may be a long road ahead.x

[TeeRee2]

Sorry if not helpful but I am also 26. To start with i wasnt getting anywhere with gp. I started going to 6 years ago about my sypmtoms although now i look back and perhaps had fibro longer than i think. However my sympts became worse, anxiety panic attacks unexplained pains. I took myself to a&e a couple of times and they ran major tests to rule out anything sinister. This was in around 9months ago now they was thourough at the hospital and i didnt feel as disregarded like at the gp. I had a brain scan which they compared to when i was around 17 years old and had told me there are changes but again nothing sinister (maybe fibro related?) they referred me to the neurologists at the university college London hospital as thats where they were sending my scans to see if i needed to go there immediately and it was all sent back to the hands of my gp unfortunately my doctor passed away so i had no other choice but to see other gps at the surgery and to my surprise they have been pretty good compared to my orginal doctor all tests done and they reassure me and it was actually then i first heard about fibro and prescribed medication and was referred to rheumatology to be tested for fibro. I suppose never give up and always explore every avenue see a new gp i know its frustrating for us if only they could make a machine so we could show or make someone else feel our suffering even just for a second. I have struggled to explain how i feel its all just so bizarre and mentally exhausting.

You will find someone eventually who will understand you and help you. Mine was brushed off with depression for a number of years and looked down on. Although been diagnosed the only thing that has eased a little is my aniexty but it still creeps up i struggle every day but no medication really takes the pain away im on a journey to change my mind set and appreciate and take everything in. I just stop what im doing and take breaths just focusing on myself for a few seconds or just standing in the garden looking up at the clouds. . I really hope you get the answers and everything works out for you. I really do.. Its awful feeling how you do now, look after yourself and allcthe best.

[Barneyboo37]

Hiya Hazel, I had Fybro diagnosed 10 years ago, after a bad bout of flu, my younger daughter ended up with ME, and 2 years ago my older daughter got diagnosed 2-3 years ago, and recently my younger son got diagnosed, so yeah I feel ya pain xxx

[klr31]

Have you tried cutting out gluten to see if it helps your IBS? If not that, try cutting out dairy too but not at the same time. Do you take anything for anaemia. I'm sorry that you feel unsupported by the medical profession.

Hope you find something which helps you.

Good luck with the rest of your training.

Karen