The Reality of Fibromyalgia, Hypermobility Syndrome, Restless Leg Syndrome, CFS, Depression, IBS & Hypertension – Guest Post by Nikki

Nikkis guest post is the 11th post in the segment on my blog, called “The Reality Of…” which gives others the ability to share their story and raise awareness of the disabilities, illnesses, impairments and invisible illnesses that they have.

Meet Nikki!

Hi, I’m Nikki. At 46 years old I suffer from fibromyalgia, hypermobility syndrome, restless leg syndrome, chronic fatigue syndrome, depression, irritable bowel syndrome and hypertension.

My Story

Fibromyalgia is usually triggered by a severe infection, or an accident, mine started to rear its ugly head when I was expecting my third child in 1996. 4 years earlier I was involved in a car accident, which ultimately ended up with me being temporarily knocked unconscious and thrown out the rear window of a car, across a road, and hitting a fence. I was extremely lucky, I had glass embedded in my head, a broken collarbone, cuts and bruises, but not much more. Little did I know, this accident would change my life forever.

It started with my right hip being sore, it ached and had me hobbling for a few hours a day, but with two small children already, there was no relaxing or convalescing for me! I was referred to occupational therapy, who concluded I had a weak pelvis, they gave me a pelvic binder for the rest of my pregnancy, as I was always on the go either running after the kids or working. It didn’t help a huge amount, I just got on with it.

Once my daughter was born the increase weight had gone, so my hip recovered well enough, I was more than busy at that point, as my son had started school and my eldest daughter had started playschool, plus I was back at work after maternity leave, luckily I had a new job, closer to home, unluckily I was a keyholder, so had to run the keys to the early shift manager after I had closed the store! Wandering around at 11:30pm with a set of shop keys was not ideal

Unfortunately, In 1999 my marriage broke down, I moved out with the children, into our own place, this time was utter turmoil, after we had settled in, I met my current husband, the downside to the break up of my marriage was that the children had to move school, the local infant school had no spaces, so they had to go to the next nearest, a good 40 minute walk away, all up hill.

After 6 months of doing It twice a day, I could barely walk. My hip was so sore I went to the doctor, who prescribed me some decent painkillers and referred me to rheumatology at the local hospital. A scan later confirmed what I had suspected. Fibromyalgia. This was in 2004. After many appointments with various consultant rheumatologists up and down the country confirmed the diagnosis, additionally adding hypermobility syndrome too.

Fibromyalgia is a condition of the fibrous tissue within the joints, causing widespread pain, mine predominantly radiates down my right side, as this was the side that hit the fence, as I over compensate with my left side, now that complains too. Multiple conditions combine together with fibromyalgia, hypersensitivity to pain or touch, fatigue, poor sleep quality, cognitive problems, headaches, irritable bowel syndrome, inability to control your core temperature, dizziness, restless leg syndrome, paraesthesia, anxiety and depression. Just because I don’t want to be left out, I suffer with most of these!

Let me explain a typical day. Wake up about 4am, as I only sleep in 4 hour bursts, take my 13 tablets to be able to get out of bed and attempt the day. Decide that’s not gonna happen and go back to sleep until 9am. Wake up again, be helped out of bed by my husband, helped to shower and dry/dress, sit In the lounge whilst he does breakfast. Spend all day watching TV whilst being helped to the toilet (speedily if my IBS is playing up!), playing charades with my husband over what it Is I am trying to explain/think of, we have been together 18 years now so he pretty much knows what my ‘thingymabobs’ and ‘whatchacallits’ are!

My husband does lunches and dinners, washes up, does washing, hoovers, not exactly what he signed up for, but I get put to bed at 10pm, along with another 10 tablets, then he gets his time, to enjoy gaming. We sleep in separate bedrooms now, as my restless leg syndrome caused so many issues, it’s just how it is now.

I used to be confident, Intelligent, happy, have a fair few close friendships, I loved working, spending time with my family. Now I am a shut In, I communicate predominantly over the internet with a couple of friends, I have hardly any contact with my family, I have gained 7 stone In weight due to my inability to exercise. I hate my life as it is now.

My Favourite Superhero

Alec Holland a.k.a. Swamp Thing. He struggles to want to become human again, realising he can’t he descends into depression because he realises he will never be what he used to be again.

Thanks Nikki for sharing your story with my readers and me!

4 thoughts on “The Reality of Fibromyalgia, Hypermobility Syndrome, Restless Leg Syndrome, CFS, Depression, IBS & Hypertension – Guest Post by Nikki

  1. Thank you for this post. Anything that spreads awareness is really good as so many people either don’t know what Fibromyalgia is or don’t believe that it’s real. I am really glad that Nikki has such great support from her husband. Hopefully there will come a time when there is some medical treatment that can make a significant difference with those who have been unable to find much relief from this horrible condition.

    Liked by 1 person

  2. Thank you for sharing this post and helping spread awareness of fibromyalgia. It must be so difficult dealing with this condition and I really hope Nikki is okay. I hope at some point in the future she can find peace with her life and start to find enjoyment again because she deserves it. Best wishes Nikki and thank you for sharing her story Ami x

    Liked by 1 person

  3. This was really insightful – I think many people have no idea what fibromyalgia is and its through posts like this that you gain a real insight. Wishing Nikki all the best and thank you both for sharing xx

    Liked by 1 person

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