Fibromyalgia sufferers- what are your symptoms?

[Afternooninthepark]

For a long time now (years) I have wondered if I have fibromyalgia but my gp always says no.
I’m 47 and was born with double hip dysplasia and have had very flexible joints all my life. My grandad was the same and I believe my mum has fibromyalgia too (not diagnosed though), I can’t remember a time when she wasn’t in pain or aching. My son was born with hip dysplasia too and one of his hips often ‘pops’ out and he is often achy even at 14 years old. I think that joint hyper mobility and/or fibromyalgia run in the family.
For years I have felt stiff and achy and although I keep active with lots of walking, if I do any weights or stretching (like I did yesterday) I end up really stiff and very achy.
Get very achy if sitting in the same position for too long.
I often feel stiff and achy upon waking (often have poor sleep) and it takes a while to loosen up.
Have had a bad back for years, usually lower and pelvic but also upper at times, very achy.
I have had IBS for over 20 years.
Raynauds also runs in the family in my mums side and I get very cold hands and fingers in the winter and they often turn purple.

I seem to tick a lot of the boxes when I look up fibromyalgia.
What are your symptoms and how did you get diagnosed?

Always poor sleep, my first thought on waking is that I can’t wait to go to bed.
Loss of cognitive function - fibro fog is very real.
I find it difficult to learn anything new and I struggle to retain information. On being given any tasks to do at work I struggle and am constantly underperforming.
Such sensitivity that DH can’t touch me much as it’s irritating and/or tender and painful.
Inability to regulate body temperature
Constant muscle pain
Exhaustion, absolute constant exhaustion.
Physical weakness
Dizziness
Anxiety. Horrendous anxiety which now means I can’t even go to the supermarket on my own without having a panic attack.

I used to run, do yoga & weights 6 times a week and I now can’t even walk to the local shop. Hoovering a room leaves me exhausted and feeling like I’ve spent the whole day hoovering when all I’ve done is a small room. I would love to be able to clean my house top to bottom like I used to. I work 3 mornings a week (desk job) and it kills me.

I was lucky enough to get a very young, newly qualified Dr when I phoned my surgery to book an appointment one time (I had seen a few Drs at the practice several times over around 3 years who checked bloods and just declared everything to be “normal”) The young dr was very thorough and diagnosed me on a combination of symptoms, how long I had been suffering and the fact that when she did the tenderpoints examination I reacted to all but 3 points pressed. I believe that isn’t used very much these days though.

I have most energy during the early part of the day. I have to nap most afternoons around 3 pm for an hour. I don’t have a social life because even meeting a friend for coffee for an hour leaves me so exhausted that the days that follow mean I suffer more. Stress makes the pain & exhaustion worse.

Is there another dr at the surgery you could speak to? If your Dr says it isn’t fibro what have they said what it is? I’m assuming they have checked thyroid function, inflammation markers, vitamin D, B12 and iron levels? Lots of those, even with figures in the low end of normal, can cause pain, poor sleep, exhaustion etc. Could some of the symptoms (eg poor sleep) be peri menopause? It’s just that you say often have poor sleep, so not always, & women often have poor sleep when starting peri menopausal symptoms. I’ve been on HRT for a year & I feel miles better, even with all my fibro symptoms making me feel awful, I do actually feel less awful than before HRT.

I have to say I now (same age op) have stiffness & aching in the morning before loosening up but that is totally different from my fibro pain, that’s joint pain due to wear & tear/arthritis.

Book and see another Dr after Covid-19 has eased, get a second opinion.
I hope you find some answers soon.

sorry that’s so long!