Fibromyalgia

[FastSwan]

Hi all
New to this so don't really understand the abbreviations 😬.
I just wanted some advice, I have recently been diagnosed with fibromyalgia at a recent rheumetology appointment. My main symptoms are pain everywhere and also burning in my arms chest and back which is apparently nerves playing havoc and if i eat certain foods when having a flare i burn up and have a reaction. does anyone else get this? I have been referred back to my GP for a treatment plan. What should I expect from this please. Tia

You’ll probably just be given pain relief and possibly a mental health referral if your GP suspects it’s exacerbated by any underlying MH conditions

Thanks for your reply. I really don't want to go down the medication root but im really struggling with it at the minute.

The burning after eating sounds like a histamine reaction. I'd look into it as there's loads of info online about it. It might also help to keep a journal to note when you have a reaction and what you ate.

Why don’t you want to take pain relief if you’re in pain?

What were you hoping to get from seeking a diagnosis?

I ran into an old friend who was diagnosed with this 15 years ago.
I haven't seen her since Covid.
She really suffered but was a single parent and had to do it all alone.
She looked very well yesterday and in cheerful form.
Her children are reared successfully and doing so well.
She is retired and living a very contented life. I asked about her health and she said she was feeling great.
There is a huge link with stress/emotional distress exacerbating it..
Women primarily get it.
I certainly haven't come across any men with it.
I think an anti inflammatory diet can help.

Tbh I just wanted to know why I was in so much pain and wanted to rule out lupus as most of my symptoms coincided with it.

Are you female and if yes, what age are you?

I got diagnosed with fibromyalgia in August of last year. I have now been on antidepressants throughout that time. I get burning session across my back. Pain all over, esp my hips, neck and migraines. I have recently taken to rubbing magnesium oil into these area throughout the week and that seems to be helping. I find hot baths help. I would recommend doing this.

Yes I'm 39

I have heard magnesium is supposed to be really good. I have been using a pregnancy pillow for hip and knee pain at night it helps a little. Thanks for the advice

Thankyou

Please see a menopause specialist or at least a doctor with good experience of menopause. A huge amount of women are being misdiagnosed with fibro when in fact it's a change/deficiency of hormones, the symptoms are very similar to begin with but HRT can rectify it in a lot of cases. I have fibromyalgia, I ended up with it after having glandular fever aged 12, I'm now in my mid 50's so many years of it, my sil was diagnosed with it aged 39 but her symptoms didn't ring true and after seeing a menopause specialist and starting HRT all her symptoms disappeared and she returned to full health. I'll look up a peri/menopause check list and put it up in a minute.

Have a look at the list, some of the symptoms are very similar to fibromyalgia.

I’ve lived with fibro for more years than I want to count.
IME GPs are not really good at managing pain. If you get referred to a pain clinic check what you’ll be getting. I spent hours ( week after bloody week) at one, sitting through talks, helped not one iota.
Check any medication and doses they tell you to take. I’ve been hospitalised twice bc of GPs giving me misinformation.

Things that do help:
Vitamins. Particularly B1.
A tens machine.
Epsom salt baths ( buy a huge bucket from Amazon, buying by the pack costs a fortune)
Hemp cream. Look at the Kind range.
Heat. Electric blanket on bed, heated throw, hot water bottles.
Distraction. Podcasts, games on an iPad/ phone, scrolling MN. Distraction helps.
Pacing. You need to learn how to pace. It takes time and you have a good day and forget and go mad.
Also support. Look at Health Unlocked, there’s a good fibro support board on there.
if you have a hydrotherapy pool near you that might be helpful.

I would consider using the curable app given fibromailgia is usually widespread pain and fatigue. Working on rewiring your pain response can be very helpful

I was diagnosed with fibromyalgia 9 years ago. I don't find that any medication helps really. The best advice I can give you is to pace yourself. Don't take on too much at once. I have found to my cost over the last few years that the worst thing I can do is undertake to do too many things in one day,e.g. if I need to go shopping in the afternoon,I won't be able to go to a social event in the evening as it will wipe me out for the next couple of days. Good luck,I hope you find some relief.

Ask for an OT referral.

they can help you with aids both mobility and in the kitchen and if needed adaptions to your home (bars / rails / wet room )

Also can help you with pacing and learning how to do things that conserve precious energy. Lots of little things really add up over the day - e.g. I never fill the kettle / dog bowl directly - I use a jug as much more accurate to pour and easier to lift / manoeuvre - doesn’t sound much but when combined with multiple other labour saving devices / tips (adapted cutlery, perching stall, methods to do things, nonslip grips etc ) it really does help.

Perching stool is fab in the kitchen.
Don't do too much when you feel well or it will knock you around for the next few days- you really have to learn how to pace yourself.
I've had loads of different drugs- pregabalin worked but the side effects were awful, I thought I was losing my memory I've settled now on slow release tramadol.
It really is awful - but be prepared that no one will understand what it is like, and people are very dismissive. It can be really hurtful. I used to run half marathons and do triathlons- now I have to nap in the afternoon if I want to stay up past 7pm.

Because the chronic pain taking pain relief stops working. Loads of research on it. NICE agree.

Stay away from sugar. Biscuits, cakes, sweets, fizzy drinks can all "inflame" and set off your pain receptors. I seem to be okay on fruit sugars like grapes or fruit juice but others are not.

Some people can cope with the side effects from the usual medications of gabapentin, pregabalin or amytriptyline but I can't so I'm not on any medication, not even normal painkillers. It absolutely sucks.

Pacing and being aware of which foods trigger a flare (onion and tomatoes are mine) are the best way to manage it if you refuse medication. And acceptance. Accept your life will no longer be what you thought it was.

Ah yes, the diagnosis they give women when they can’t or won’t work out what’s actually wrong with us! I was ‘diagnosed’ with that by a rheumatologist who bent my symptoms to fit what he wanted to diagnose. It’s a fob-off at best, and unsafe at worst.

Yes- sugar/carbs give me extra pain the next day. And alcohol makes me feel poisoned.

Everyone is different.

Curious at how fast you got a diagnosis and if everything else was ruled out first. I went round in circles for 5 years, all the Drs including consultants wanted to do was mask the symptoms. Fibromyalgia can be a cop out diagnosis for some Drs who haven’t fully investigated. I eventually went private and got my Fibromyalgia diagnosis.

My main treatment plan is a low maintenance dose of Escitalopram & Pregabalin. I also use cocodamol & naproxen for additional pain management as and when needed. I also have sleep apnea which was made worse by lack of movement and weight gain due to my chronic fatigue & pain. Once I got a Cpap machine and my sleep improved it helped my pain & fatigue.

ive found collagen supplements help.

For food issues look at leaky gut advice. There are also support groups on Facebook for autoimmune and fibromyalgia, they have loads of advice on what foods are good and bad.

OP I've had the joy of fibromyalgia for about 35 years. I was at points very debilitated but have learnt loads of tips that means I can work full time, go out loads and have 4 kids.
The big things that have worked from me:

1. Working out what causes inflammation in my body. For me it's certain foods (citrus, wheat and onion). Can have any of it or 9 flare up. I did a strict exclusion diet to work it out. Totally and utterly life-changing.
2. Stretching daily (yoga or just stretches)
3. Balancing my blood sugar (lots of books on how to do this) and cut out ultra processed foods.
4. Exercising cardio daily. I vary it up and have to push through about a half hour of pain but afterwards feel much better
5. Deep relaxation do about twice a week (lots of good yoga Nidra stuff online)
6. Distraction - if I talk about pain or dwell on it I'm in pain, if I acknowledge it but then just move on it's not as bad
7. Not sitting too long in anyone position. Move little and often all day.
8. Rest - learning to have times in the day when you rest.
9. Acupuncture - totally amazing for taking away electric pain. I have to have it at least twice a month. There are some multibed clinics depending where you live they're too much cheaper. Don't go to a physio but go to a proper Acupuncturist.

10. I avoid taking painkillers or any medication. I do take magnesium and vitamin b & D supplements. I'm very special occasions I will take a nytol to help me sleep (herbal ).

Hope you find what works with you.