I’m trolled for having fibromyalgia – people call me an attention-seeker & even friends reckon I’m making it up

CRIPPLED with nausea, constantly exhausted and spending up to 12 hours a day in bed, Rachel Harding isn’t like other 21-year-olds.

Far from being a blazing hangover, her symptoms are actually down to devastating illness fibromyalgia which often leaves her so fatigued she can’t leave the house.

Fibromyalgia is a long-term condition which causes pain all over the body. Rachel is young to be diagnosed, with most sufferers between the ages of 30 and 50.

Women are seven times as likely to be affected as men, with estimates suggesting around one in 20 people have the condition to some degree.

Symptoms include pain, stiffness, problems with sleep and headaches, and there is no cure – treatment can include anti-depressants and counselling.

The cause of fibromyalgia isn’t known, although it’s thought brain chemicals can have an impact as well as stress.

It means some question the condition, as Rachel has, devastatingly, discovered.

Here, the Primary Education graduate from Lincolnshire tells Fabulous her story: “I was officially diagnosed with fibromyalgia in August 2019 but looking back I believe I got my first symptoms aged 14 when I was as high school.

I suffered overwhelming fatigue, lack of energy, brain fog, joint pain and just pure exhaustion. Not normal things for a teenage girl.

It’s ruined my confidence, it feels like everyone around me is living their lives but mine has been stolen from me.

What is fibromyalgia?

According to the NHS, fibromyalgia is a long-term condition that causes pain all over the body.

As well as widespread pain, people with fibromyalgia may also have:

  • increased sensitivity to pain
  • extreme tiredness (fatigue)
  • muscle stiffness
  • difficulty sleeping
  • problems with mental processes (known as "fibro-fog"), such as problems with memory and concentration
  • headaches
  • irritable bowel syndrome (IBS), a digestive condition that causes stomach pain and bloating

I had to watch friends going out at uni while I was stuck in bed basically unable to move, I’ve missed out on so much.

I’ve lost so many friends, some even accused me of faking my illness.

They thought I was avoiding them by choice, or said I was ‘supposedly ill’, which was incredibly hurtful.

One sat me down and told me my illness was psychological and due to me being anxious and depressed.

Why do they feel they have a right tell me what my illness is when they don't have to live with it every day?

I had people discussing my illness before I was diagnosed and telling me it was all psychological.

I’ve also had a number of hurtful comments on social media.

I’ve been called a narcissist and an attention seeker because I share what I’m going through. 

One person said that if I believe I will be pain free, I will be – that my illness is only permanent if I think it is.

Basically that I am wishing this pain on myself.

One of the worst comments I have ever had was from a fellow fibromyalgia sufferer, who told me I was self-centred and to grow up.

I’d posted some photos of myself which annoyed her, but I don’t think she realised how much she upset me.

I post online to motivate myself to keep going when I have hard days, not for followers.

This is just part of the stigma surrounding fibromyalgia.

I have never seen these comments about any other chronic illness, and it just makes me wonder, why fibromyalgia? 

My boyfriend, Adam, and parents have been amazing throughout though, they’ve been there every step of the way.

I was finally diagnosed last year and I was almost glad to finally have a reason for everything I’d been through – the debilitating pain, rashes and utter exhaustion.

One of my big problems has been crippling nausea, which makes it hard to take some medications which might help me.

A lot of what I’ve been prescribed makes me feel even sicker – even if it helps with the muscle twitches, shakes and numbness.

There was a point last year where I dropped a stone-and-a-half in weight because I was finding it so hard to eat.

I tried anti-sickness tablets to help but had such a severe reaction to one I was rushed to hospital in an ambulance.

My heart was beating too fast – it’s the worst pain I’ve ever experienced.

I’ve even been prescribed strong painkillers like Co-Codamol and Tramadol to help with my pain, but the side-effects aren’t worth it for me.

Stress is one of the biggest triggers for my flares, I get a huge pain in my head and can’t even lift it off the pillow. I can’t think clearly, it’s like I’m in a fog.

I’ve tried all sorts to help, from vitamins and CBD creams to Epsolm bath salts.

So far Celafen cream has been the best, it was recommended to me by someone on Instagram and it’s really helped with the pain I get from trapped nerves.

Sometimes I wake up in complete agony in a new place. I apply Celafen immediately and by the end of the day, the trapped nerve is gone.

I’ve never found anything to help me with that type of pain so quickly, not even prescription medication.

I’ve managed to cut down on painkillers thanks to it, which is good considering how tough times have been with Covid.

  • Celafen cream muscle and joint rub, Skinshop, £10.50 – buy now

I was classed as high risk so only left the house three times during the first lockdown.

Appointments have been delayed too, so it’s been such a help to have something to help manage my pain.

Follow Rachel on Instagram @myjourneythroughfibro.

Where to get support

The NHS lists numerous organisation which can help sufferers.

Fibromyalgia Action UK is a charity that offers information and support to people with fibromyalgia.

If you have any questions about fibromyalgia, call the charity's helpline on 0300 999 3333.

The charity also has a network of local support groups you may find helpful and an online community, where you can find out about news, events and ongoing research into the condition.

Another support group UK Fibromyalgia.

And this fibromyalgia sufferer who needed morphine for pain leaving her barely able to walk claims £9.95 cream eased her symptoms.

Plus this the test for fibromyalgia you can do at home to spot tell-tale signs – as Page 3 model Jo Guest shares agonising battle.

In other health news, we told you the simple exercises that can boost happiness in lockdown.

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