Please tell me about fibromyalgia

[AlexaShutUp]

If you have it, how did you get a diagnosis? And how long did you live with the pain before seeking advice from your GP?

I have horrible aches all over my body and I just feel wiped out all of the time - a bit like having flu without the fever. Initially I wondered about arthritis as I have terrible pain and some stiffness in my arms and hands, but there is no swelling or joint pain. Then I googled the symptoms of fibromyalgia and they all seem to fit.

However, the pain comes and goes a bit - I have good periods and bad ones. I'm not sure if that's usual?

If you suffer with this, what self-help strategies have been effective? I try to eat well, but don't always succeed. I also try to get some regular exercise but find it very hard when all energy is sapped.

@bringbackthestripes I take D-ribose 3 times a day - I take it
in a cup of coffee.
I stacked the Creatine monohydrate [monohydrate is the one you need to look for] for 4 or 5 days and then one scoop once or twice a week.

www.amazon.co.uk/Protein-Works-Creatine-Monohydrate-Unflavoured/dp/B00FRM3YQS/ref=sr_1_fkmr2_3_s_it?s=drugstore&keywords=creatine+monohydrate+orange+burst&tag=mumsnetforum-21&ie=UTF8&qid=1539524833&sr=1-3-fkmr2
Creatine
www.ncbi.nlm.nih.gov/pubmed/23554283
D-ribose
www.ncbi.nlm.nih.gov/pubmed/17109576

@bringbackthestripes I take it a bedtime but i know someone else that takes it 3x daily. just be careful as you can over dose on it apparently!

i was really lucky in regards to the pain management course, it was before i had children and i'd stopped working so i could spend the rest of the week recovering.

i also take lots of vitamins & probiotics which i do feel it has made a difference, although if you'd told me that when it was really bad i'd have wanted to punch you in the face!

Lidocaine plasters sound like a good idea for my fingers. Even when all other symptoms are in remission my fingers still hurt. I use cohesive bandages and "arthritis"gloves as recommended by the RA physio.

Meant to say - yes, just rub in the comfrey oil. I alternate between that and the brufen gel.

I get the collar bone pain too - try taking the weight off your shoulder by putting pillows or a folded duvet under your elbows so you're kinda sitting up with your elbows really supported and above waist level.

I was diagnosed in 2004, 6 months after having my DS. I'd been in terrible pain from not long after giving birth, my GP did blood tests & then referred my to rheumatology as she suspected I had either rheumatoid arthritis or lupus due to my blood results, the rheumatologist sent me for x-rays & did more blood tests, I was then diagnosed with Fibromyalgia as although I had raised ESR, CRP & Lupus markers, they weren't raised enough to give me any diagnosis of either disease & I hadn't got any swelling on my joints. He prescribed me Gabapentin, Amtriptyline & Co-codamol 30/500 & discharged me back to my GP. I've been referred back a couple of times but it's been the same, Fibromyalgia & live with it, I've had physio & been to the pain clinic but they didn't do anything to help. I've also got Osteoarthritis in my feet, knees, hips, spine & shoulders, I can hardly walk now & I got diagnosed with CFS/ME in 2013, I spend a lot of time in bed as I'm permanently shattered, I can't take Gabapentin & Amitriptyline any more as the side effects were worse that the pain I was in, I now take Dihydracodeine, Naproxen, co-codamol & Mirtazapine, plus I use CBD oil to relieve the pain, I had to give up work in 2010 as I was off sick more than I was at work.

Make sure u look at other options. I was diagnosed with this. I then had ibs. In an attempt to help the ibs I made my diet only clean foods. No crap at all. All fresh. Within a week my pains in my arms and legs had gone. And I felt 100% better. That and a b12 injection and I lead a normal life.

CreativeMumma a quick google tells me I can’t take 5HTP with my AD but I have recently started probiotics. Pleased to hear they may help rather than be yet another waste of money.

SugarandVinegar thanks for the links & info. My Amazon order will be here on Wednesday. This Fibro malarkey is expensive! Thanks for the tip to relieve my collarbone pain.

curlykaren discharged from rheumatology so will see what the dr says about the lidocaine plasters, have never heard of them. The capsicum ointment sounds risky

Nat6999 are you in the uk? if so do you find the cbd oil actually helps? I was under the impression that it’s legal because it has such a low amount of the thc compared to stuff that would be illegal (and so beneficial) to import. Where do you get yours from if you are uk? I did buy one lot but it was expensive and didn’t seem to help so I didn’t bother trying a different bran or supplier but will definitely try again if you have found one that works.

Dontgiveamonkeys1350 I cook everything from scratch and have even tried gluten free and I also have B12 injections but am still getting worse rather than better. Do you exclude dairy? That’s one thing I haven’t tried tbh.

You can buy CBD oil but it can't contain THC, the CBD is the painkilling element, you don't get high. It's not illegal to buy CBD in the UK, I buy it in vape juice, it's the easiest way for me to use it, I've managed to drastically reduce the amount of drugs I take & I don't suffer the side effects I used to have.

I got a diagnosis early this year after several years of symptoms. I have degenerative disc disease as well, and then had a brain injury which is when my symptoms started, so the fatigue etc was initially put down to that, but it’s just never left me. If I have a week of doing very little, I can almost kid myself I’m ok as my symptoms aren’t too bad, but one night out, or a day of overdoing it, and I feel like I’ve run a marathon combined with a god awful hangover! Takes days to recover and I’m no use for anything. It’s a horrid illness.

hi, can i ask what tests etc do they do to make a diagnosis?

many thanks

I was diagnosed by rheumatology as well. I was referred for a diagnosis of extreme symptoms following the birth of my child. I was diagnosed with another condition that explains a lot of the fatigue and pain, but was also diagnosed with fibromyalgia.

For me, it's been really difficult trying to separate the two conditions and treat them separately. So many symptoms cross over both conditions, but my consultant was quite sure I have both. I suspect I've had fibromyalgia from a very young age, around 2 yrs old. My other conditions symptoms don't start until around 8 yrs old.

I have it. I was diagnosed after being referred to a rheumatologist and essentially ruling everything else out. A private consultant diagnosed me with EDS too but on top of the fibromyalgia, not instead of.

I was on medication for four years. Every medication they could throw at me - gabapentin, pregabalin, tramadol, codeine, naproxen, amitryptaline, SSRIs etc and none of them helped. I found the side effects worse than the daily pain. I came off all medication while TTC last year and I'm still off everything. I feel much better but I'm obviously still in pain.

Worse days are normal. Worse periods are normal. Most days now I'm fully functional, if a bit limited. Some of those days I am in excruciating pain and can barely get out of bed to pee.

Vitamins helped me massively, especially vitamin d. I take a multi vitamin then vitamin d, cod liver oil and magnesium daily. Stretches as soon as I get up and stretches on the sofa etc also help (almost yoga like but not quite). Yoga is great when I'm up to it as is walking when I'm not in severe pain. Ibuprofen for daily pain management and very occasionally 8/500mg cocodamol. I don't touch the harsher opioid derivatives now after an accidental codeine addiction and tramadol literally doing nothing for me because I'd become so numb.

Honestly (and this is going to sound patronising as fuck), once I came to terms with it and got over myself mentally I found it much easier to manage and the pain decreased. Mindset is half the battle as the pain begins and ends in the mind. It's still very real and often awful but I can't go back to the dark place of hopelessness and depression that became a vicious circle impacting on my physical health. I was a bad mother then. I was a bad wife and I was a victim of my own punishment.

I was diagnosed about six years ago. It came on quite suddenly. I started getting pains in shoulder and legs. Then the pain started to be everywhere. Excruciating pain. My fingers were shaking and I lost my sense of balance. Lots of tests including brain scan. I was convinced I had ms. All tests were negative. So I was diagnosed with fibromyalgia. I am in pain all the time. I function by taking 30/500 co codomol 4 times a day, anti depressants and vitamin D. Some days I can manage ok. When I get a flare up it is absolute agony. I can barely get out of bed. Even after six years I still keep praying it will just miraculously disappear. I would do anything for that to happen.

I was tested by him poking the pain areas of fibro. Not very scientific in my mind. I was in and out of the room in four mins. Hence why I am not surprised I don’t have pain after changin my diet. Even though the doctor said that is not a thing that works

Placemarking as I have FM and need to note some of the vitamins and supplements.

In spite of being told by my Rheumatologist that I have fibromyalgia I don't actually accept that it's a thing and would never mention it. It seems to me to be in the same league as ME. Just a convenient name for a group of symptoms.
I fear that once such a label is attached to you then nothing will ever be properly investigated as it's easy to blame it all on FM.
I feel my symptoms are fundamentally part of RA.

@Dontgiveamonkeys1350 what diet changes did you make?

WineandWhine i have fibromyalgia and no I'm totally getting what you are saying .I still work part time and some days just knock the stuffing out of me. But I am very tough on myself ,I won't let it dictate to me .It did in the beginning but then I thought nope no longer .I rarely take painkillers unless it is an horrendous day else I get rebound migraine from using them to frequently. It is horrible I do too much and I pay the next day .Horrible illness .

Meant to also put diagnosed two years ago by rheumatologist but suspect and he also did that I had it longer than that .

Call from the GP. Blood tests suggest no arthritis. Slightly raised levels. If not very much.
He’s suggesting amitryptaline (spelling?). Said joint pain was to be expected with hypermobility and this drug may or may not help.
I’ve spent the day curled up under a blanket on the sofa. Legs ache. Today my hands hurt. I can hardly type. Supposed to be cracking on with Woolly Hugs squares. But it hurts.
Should I be seeing a rheumatologist? Anyone any advice? So tired. So sore.

Yes, @wolfie do ask for a referral to a rheumy - if nothing else they
will do tests to rule things out.

Is the pain in the palm/heel of your hands? Pain on pain, it's just so debilitating.

The GP just seems to want me to go off with pain meds.
Today my calf muscles are cramping. My feet and ankles hurt. In my hands it’s the actual joints that ache.
Just so many random pains. And the GPs aren’t interested. I was told in the summer to pick the worst pain and have physio for that. And now I’m told I will hurt as I’m hypermobile.
I don’t expect a miracle cure. Just a diagnosis and a plan to limit the symptoms would be fantastic.

Wolfie has the dr checked tender points for Fibro? They may well be thinking that with a diagnosis of hypermobility then you already have a reason for your pain so not consider further checks. Tbh all rheumatology did was re check my tender points, confirm my exhaustion, cognitive impaiment and sleep difficulties then do bloods to rule out rheumatoid arthritis (I have osteoarthritis instead) then discharge me back to the dr to prescribe meds. No help to limit symptoms, no physio- nothing. That’s why I’m on here getting all the info I can and buying all the supplements everyone recommends because after years of suffering I’m at my limit.
All you can do is keep going back to the Drs again & again. It’s a long slog I’m afraid and no real help at all really.

The NHS site says the tender points thing isn’t common these days.
Thing is I’ve been hypermobile for all my life I presume. The sleep, cognitive issues, pain and stomach issues are all much more common.
They dont seem all that interested in the hypermobility though. Physio haven’t been up to much.

I was just thinking that if you suggested tender points that they might be prompted into viewing a further diagnosis rather than just treating you as “well you are hyper mobile, of course you have pain” but if they haven’t been prompted even with all your sleep, cognitive and stomach issues then maybe not. But it took me a couple of years of repeated visits that’s why I said it’s a long slog and you have to keep going back to the Drs again and again. It would be nice if it was something visible so that Drs could actually understand. A broken bone is easy to sympathise with.