Possible Fibromyalgia diagnosis/symptom help

[AnxieteaAndBiscuits]

I'm 43, single mum of 2 boys (12 and 7). For the past 5 years I've been plagued by various aches and pains. These have ranged from back and hip to finger joints. I also have frequent earache and the feeling of swollen neck glands. Over the past 3 years my eyesight has steadily being deteriorating with very blurred vision at times (new prescription for the last 3 years). I have anxiety and heart palpitations. My muscles frequently twitch especially in my legs and I have headaches daily. I also have really painful skin mainly on my back - to the point I've checked my back for bruises! And the sweating.... the sweating is the worst!!
As I said I have anxiety and this is what is holding me back from seeing a GP as they have very unhelpfully labelled me with hypochondriacal disorder. This is because my symptoms are widespread with no obvious cause which then leads me to be anxious and spiral (thinking the worst).

I know it's not a quick process but I'd be grateful for any advice going forwards. How do you approach the GP - go with notes or just go and see what they say?

Thanks in advance.

Have they sent blood tests for lots of different medical conditions already?

Just to add I was diagnosed with post viral chronic fatigue back in 2004. This seemed to get better over time but, I do still struggle with fatigue at times.
Full bloods done back in July and everything was normal.

Also have jaw pain, facial pain and very painful periods.

@rainbowdoc yes, full bloods done after having an IBS flare up. All normal x

Sounds much more like peri menopause. I'm a fibro sufferer for 40 years and I'd suggest you try hrt, you may need to see a menopause specialist to get it but I'd try that if I were you.

@Mudflaps thanks for the reply. That's really interesting. I have wondered if it's more hormonal and even considered PMDD!
My periods are still regular but I'll definitely consider this.

@AnxieteaAndBiscuits, it can be a quick process (or reasonably so). I went and started reeling off a list of symptoms going back almost thirty years. The GP listened for about a minute and then told me he was certain I have fibromyalgia.
I was then off work for months (as is let things slip so far down after having massive problems for months prior), but with the right combination of medication and with exercise added in when I felt more able, (nothing groundbreaking, just walking on a treadmill), I've been able to return to work and live a normal-ish life.

Wow @vipersnest1 that's really positive. Most things I've read have said a rheumatology referral would be needed? I suppose it depends on if you have a sympathetic GP

Do you have sleep problems and migraines?

No, in many areas now it's not appropriate for a GP to refer to hospital just to get a diagnosis rubber-stamped as it were. (And in fact, I had repeatedly been fobbed off by rheumatologists when I said that I believed all of my symptoms were connected.)
I do agree that the GP I saw was sympathetic, but what made the difference was that he was clued-up about fibromyalgia.
You might want to try to find the referral guidelines for fibromyalgia in your area. I was able to find mine (after my diagnosis), as line you people expressed doubt that a GP diagnosis was sufficient thanks HR doctor who was an absolute arse and caused me huge stress.

PM'd you op :)

@vipersnest1 thank you. I think I will definitely start making notes and monitoring my symptoms so I can go prepared. Hopefully they'll be as understanding won't put it down to health anxiety.

@AutumnColours9 I have terrible cluster headaches and tension headaches. I get fatigued during the day.

@vipersnest1
but with the right combination of medication and with exercise added in when I felt more able,
I'm aware of exercise and what sugar does to the body but I've not been given any information regarding medication for my fibromyalgia. Mind if I ask what you have been prescribed?

@AnxieteaAndBiscuits at your age I would have wondered if perimenopause was your problem too. You can still have regular periods but they can be more painful or heavier during this time. The peri just means "before".

@Pixiedust1234 definitely more painful. I had a scan last October and the sonographer found fibroids. Periods are no heavier. Definitely could be peri - I'm just trying to figure out my ongoing pain and other symptoms.

@Pixiedust1234, I take a low dose of gabapentin for nerve pain, amytriptyline, also for nerve pain but helps me to get some restful sleep, methocarbamol to help with muscle spasms and twitching (baclofen stopped working for me) and citalopram to help me deal with the effects it has all had on my mental health. I also occasionally take meptazinol for breakthrough pain (rarely) and prochlorperazine for extreme anxiety (even rarer, think occasions like my mum dying).
I'm planning on trying to come off gabapentin - gradually. I won't be telling my GP about that until I know it will work, otherwise I'll be subject to unnecessary medication reviews and it will also mean I will end up staying in my usual dose anyway if it doesn't work. After that, I aim to reduce or stop the citalopram.
My aim is to reduce medication to the minimum possible, but at the moment, in order to be able to hold down a full time stressful job, I need it.

My perimenopause was definitely hidden by my fibromyalgia. It wasn't until many years later that I realised my joint/muscle pain was halved, my brain fog was practically reduced down to 10% of what it had been, my anxiety and deep depression was no longer a problem, my insomnia reduced, and this happened around the same time as my periods stopping.

I went from a human shell that wondered if she really had dementia, was bedbound and needing a carer to someone who is a bit slow mentally and slightly doddery but improving mentally and physically month by month. Still have pain and exhaustion if I overdo it, plus other lovely fibro symptoms, but everything has improved 100 fold since then.

I think what I'm trying to say is don't underestimate the absolute horror that perimenopause can wreak on your mind and body (for some people). I didn't see it at the time but I can now looking back.

@vipersnest1 thank you for that. My gp has refused all pain medication so I was wondering what else there was.

@Pixiedust1234, you need to tread carefully and have your evidence in order. (Some GPs don't like being disagreed with!)
This is what I've found after a quick google: www.nhs.uk/conditions/fibromyalgia/treatment/
The GP can't argue with that, and you can then go on to trial alternatives - for instance, I tried tramadol. It makes me feel horrible and spacey, so I just can't take it and drive or do anything that requires concentration. Cocodamol impacts my gut hugely (I have a rectocele and it makes my constipation far worse, so that's why I have meptazinol on prescription. I've also tried nefopam while meptazinol wasn't available. It wasn't as effective and also made me spacey but less so).
It may well take time to find out what suits you - my neurologist (I have neuro symptoms in my legs that there is no discernible reason for) wanted me to go up to 900mg gabapentin a day - it didn't improve anything, and made me feel weird, so I went back down to 300mg a day. It took ages but at least I tried!
Good luck with it.

@Pixiedust1234 I think I'm just trying to find a reason for me being such a shit show! It's been going on for so long now and as I said being labelled a hypochondriac doesn't help. Doctors are quick to say that all my symptoms are anxiety related and whilst I'm not underesting the effects of anxiety on the body my symptoms are very real.
I have wondered about my hormones and whether or not it's all down to being peri. Having looked at HRT I'm not sure I'd be a suitable candidate anyway so I guess it will be a case of 'getting on with it'.

Really glad you found some relief. Hopefully so will I soon :)

I have a lot of very similar symptoms that are seemingly random but I feel are interconnected. Right now, there's an area of my left foot that keeps feeling hot for no reason but it looks totally normal, which is new. I'm having what I call 'internal tremors', palpitations, brain fog, increased tinnitus, random nerve painaand twitches, joint pain and I'm exhausted. I have had a possible fibro diagnosis a few years back but I'm reluctant to believe it. The neurologist just have me duolexitine but I never took it. Gp's probably also think I'm hypochondriac but I do actually have genuine unusual stuff wrong me like hearing loss and early onset cataracts. I've also got menieres disease but that has been mostly in remission lately, thank christ.
I'm having similar problems with my periods and hot flushes. Thinking I'm possibly peri as well. Dr's always label me with anxiety these days but latest one I saw suggested getting the coil to see if it helps as my periods are heavy and causing me to be a anaemic. It's all a bit much really.

Went off a bit there... But would be keen to hear your experiences as I feel like my Dr's are sick of the sight of me.

Fibromyalgia is usually a diagnosis of exclusion. When they can't come up with anything else it's labelled Fibromyalgia. I really wouldn't want that because once they put a label on it they won't consider anything else and every little thing will be put down to fibro.

@Cephalaria i agree, this is why I was reluctant to take meds and be labelled with it. Having done more research today it seems perimenopause is quite likely the cause of some of my issues.

@Cephalaria I know what you mean. At the moment I'm labelled with hypochondriacal disorder and generalised anxiety disorder. If I explain to my GP I sweat excessively (and I mean excessively) he will automatically tell me it's anxiety, despite not being anxious at all. I feel like as women we're often labelled unfavourably.

@CreatingHavoc I'm actually leaning more towards being peri. I constantly clear my throat just lately due to what feels like a build up of mucus- had no idea this could be associated with menopause.
Having a family history of breast cancer and strokes I doubt HRT would be the best route for me (as this was the reason I came off the pill). Today, I've been looking at more natural methods - not sure if any work.

@AnxieteaAndBiscuits the throat clearing could be silent reflux. I've had it since I had my second daughter as I got a hiatus hernia after pregnancy.