Hi I'm new here

[Buffs33]

I have been experiencing lots of different symptoms over the past 18 months. Chronic pain in neck arms, elbows knees lower back. RLS, headaches. Terrible brain fog, insomnia and low moods. I've had CT scans on my head all clear, blood tests for rheumatoid arthritis and inflammation. Physio. I am taking HRT and sertraline. I have not been diagnosed with fibromyalgia but I stumbled across this illness and it seems to fit with all my symptoms. After my latest blood tests, I have to make an appointment with my GP to discuss things further. Is it possible for a definitive diagnosis?

[CM1EDSUK]

Hi @Buffs33 - & welcome to the forum.

Yes, it is possible to get a definitive diagnosis; the difficulty is that fibromyalgia is a 'syndrome,' so there are many people with a variety of symptoms under this one 'umbrella;' some of the symptoms of which can also be found in other disorders.

You may very well have fibro, but, may not. You are doing exactly the right thing in researching, & asking your GP if they consider you might have fibro is a totally valid question, which I hope you ask.

May I ask why you had a CT scan of your brain?

[Buffs33 in reply to CM1EDSUK]

Good morning, thank you so much for your reply. I was referred for a CT scan because of the headaches, my brain fog and I sometimes experience difficulty with my speech. Sort of slur. My Dad died of vascular dementia, so it was to rule out a neurological problem. At the moment, I feel like a hypochondriac. I have so many different ailments. I have been a very active person all my life but I feel like an old woman. I'm stiff as a board if I sit for longer than a few minutes and I'm even experiencing pain in my feet and face. I'm drenched wet at night and very rarely get a good nights sleep. Yesterday I had, what I can only describe as a mild panic attack for no reason at all. Which was a horrible feeling.

The last time I saw a GP it hadn't really twiged that all the symptoms I have been experiencing could be linked. This time when I see a GP I will take a note book so I remember everything, and mention fibro. Kind regards.

[Loobielu]

Hello Buffs, I'm recently diagnosed too and followed a very similar journey to what you have. I'm in the UK and my GP finally referred me to a rhyumatologist on the NHS. It took about 9 months for appointment and she diagnosed me with fibro at that appointment. She recommended 10mg amitriptyline but I couldn't tolerate the side affects and it was only taking the edge off the pain but for some it works. Got to try anything hey! Best of luck getting a diagnosis and don't be afraid to push and be your own advocate! Gentle hugs x

[Buffs33 in reply to Loobielu]

Hi there, is it loo or loobielu? Thank you so much for your reply. This started when I tore my rotator cuff. About 2 years ago. Sea swimming. Then I suffered the same agonising pain about 12 months later. This time I was diagnosed with a trapped nerve. That's when all the other symptoms started. I was prescribed amitriptyline for the nerve pain but it doesn't touch the pain and because of the side effects I can only take it at night but it does help me sleep. I also started a new business about 12 months ago, which was very stressful. I think these situations are linked and maybe were the triggers for all of my symptoms? Gradually, over time my symptoms have increased. So today I will contact my GP and try and get an appointment. Take care buffs.

[Loobielu in reply to Buffs33]

Hey buffs, thanks for the reply too. Like many the start of your journey is by injury(ies) which sounded awful! I can only imagine mine is from stress plus I suspect my mum had fibro too but of course undiagnosed back then. I see you're on HRT too. The answer to our prayers we are told but despite the addition of the god of testosterone I still feel utterly pants 🤷🤦. I absolutely relate to all your symptoms and I'm currently searching for my next solution 😏. Like others have said, I just keep moving but pacing. Stopping for long periods of time is a no, no for me as is doing too much! Avoiding stress seems impossible but it's definitely a trigger. Best of luck with GP, please let us know what they say (if you're happy to share of course) and Lou is great X

[SusieSquirrel]

Hello Buffs33I was diagnosed by a rheumatologist about 6y ago. Since then I ended up having a lumbar puncture because of my headaches. I was then diagnosed with hydrocephalus and or intercranial hypertension and needed surgery. Both cause brain fog and headaches as well as a shuffling type of walk and pulsatory tinnitus noise which is deafening at times. It took me years to get a gp to listen and do something about it

[Yassytina FMA UK Volunteer]

Helllo, differently yes good that you are seeing your doctor after having tests done @CT scans , it will help having been done this route, also if you made notes about your symptoms and how long it’s been going on, my doctor diagnosed me , clear blood tests , ongoing symptoms , I didn’t have too go too a rheumatologist (some docs do refer ) ,I hope you get answers very soon and if it is Fibro please do come back on the forum and let us know how you get on ,take care.

[Lulu_Lollipop]

Hi Buffs, I share many if not all of your symptoms. I'm not on HRT though I tried it for a short time during 2019. Availability was so bad I ended up on 3 different sorts in rapid succession so I never got to feel any benefits. I had a stroke in August 2019 so gave up on the HRT, but now considering trying again because apart from hot flushes, I have all the other things you mention. Trouble is I had major brain surgery in 2017 for a large brain aneurysm and then the stroke and I have no idea what symptom relates to what issue. Such graunchy stiffness and awkwardness and as I'm active (have to be) it can't be to do with just sitting down and seizing up. I have had physio, used to go to local hospital for it on a regular basis then Covid Lockdowns put an end to that. I do the exercises at home, but I have had no improvement. What gets me is the annoying inflexibility. I was a gymnast in my youth and carried on being very supple, but it's as if all the elastic has gone. Do try physio though it may well help. Oh, nearly forgot to mention I am being seen by a rheumatologist in February and I am really hoping for some help. My bloods are fine, by the way, but I'm on blood pressure tablets, blood thinner and statin just in case. To hopefully prevent further stroke.

Ha! When I read my posts I remember how bluddy great I felt at 50. Then tinnitus started and husband b*ggered off when the large brain aneurysm was found by chance. I still have the tinnitus, but all these other issues now and I was told by a neurologist a few months ago that the episodes I have (and put down to migraine, but worse than they used to be) are mini-strokes.

Wouldn't it be great to be diagnosed with whatever our problems are and then cured

[Lulu_Lollipop]

Oh, another thing I meant to ask. Has HRT helped you? If so, what has it helped with and which sort are you on?

[Buffs33 in reply to Lulu_Lollipop]

Hi Lulu, gosh what a journey you've been on, but you still sound so optimistic. I'm on 1mg kliofem. It definitely helps with the hot flushes and the sertraline was a game changer for me in terms of mood. These other symptoms, I really dont think they are the menopause. At least my GP hasn't suggested that's the case. Take care buffs

[Whiteclouds]

Hello I sympathise with you I have similar symptoms I was sent to a rheumatologist by my go and after some years was diagnosed as having fibromyalgia. At present I’m in a lot of pain in my lower back , hips , buttocks, legs, ribcage, arms ,shoulders, wrists and fingers thumbs and palms. I also have neck pain and headaches. The pain is constant even when I sit and lay down I struggle to walk and am undergoing physio I have been told I must keep moving even when the pain is bad and to pace myself I take frequent tests as I am out of breath and get terrible fatigue which forces me to fall asleep for 25 to 30 mins at a time. I have been reading on the research which they now say the condition is an auto immune condition something I have suspected for a long time. Since any vitamins and minerals I have taken and eaten healthy diet and exercised in the past has had no effect. I find a small relief in taking hot baths with Epsom salt and Flarin capsules but sometimes these don’t work. Please see a rheumatologist as they are the only people who can give you the diagnosis. I wish you well and hope help is round the corner for all with fibromyalgia.