It's official

Hi everyone - it's official - I have Fibromyalgia. I saw my rheumatologist yesterday who told me that the Lupus has taken a back seat for now with a negative ANA test again, and the 'hurting all over' tenderness/burning/stabbing pains and flu like aches and stiffness are down to Fibro. And the fatigue of course. He's prescribed me Melatonin to help me sleep better and told me start some gentle exercise - to start with 5 mins of walking per day. I feel relieved to finally know what is going on for sure (I had suspected Fibro which is why I joined this group!) and pleased to have some treatment plan at last. Thanks for your support - you are such a lovely group xx

24 Replies

  • Hi Dryad

    You knew I thought that was your problem but so glad you got a quick diagnosis! Thumbs up for the rheumy and now you have a starting block to work from

    Take care x

  • That must be a relief. Like yourself I had all the symptoms of Lupus but not the antibodies. We Fibromites must stick together 🐸

  • I'm so glad you know now . I am waiting for app also I've been so I'll over the last week severe pain in shoulders vack but like a throbbing burning pain especially when I try to lie down or sit back also my hips pelvis area was so stiff an painful when I try to get up from bed I think I've flu also . Do you know if this is similar to yourself I'm getting so tired of this an not knowing is worse . Best wishes to you 🌸

  • Sorry to hear you are having such a rubbish time. It sounds like you are in lots of pain. It could be Fibro but I'm no expert. My symptoms are burning/throbbing/aching/stabbing pains in my arms legs, feet and shoulders (in muscles/tendons/joints/nerves). I have stiff muscles when I haven't moved for a while - and I feel worse in the morning after being still in bed. I get a stiff neck which causes lots of headaches. And I get a lot of fatigue - sometimes with weakness in muscles.

    I hope you get some answers soon.

  • Thank you for reply sounds quite like the pain I have but who knows 😓 It's so frustrating trying to figure out . I have autoimmune tyroid so it's quite hard to tell the difference. I'm in so much pain today my shoulder blades an if I pinch / lift my skin around top of arms it's Realy unbearable trying not to poke an hoke lol . Thanks again 😁

  • I am glad you have finally got something sorted and sorry you have fibro in the first place :)

    I am having to make my own plan as I have a not been offered any help so it is nice to hear when others have good news :)

  • I am glad you have a diagnosis as now you hopefully can start moving forwards.x

  • Hi there

    It's good to hear that you have now had a diagnosis.

    I was interested to read that you have been prescribed Melatonin. I have a vague idea what this is and understand that it is to help you to sleep but I have only seen one other person on the forum mention Melatonin.

    I have had Fibro and Chronic Fatigue for over 30 years but am yet to find a treatment that really works. Would you be so kind as to let us know how you get on with the Melatonin?

    Wishing you all the very best. Lu xx

  • Have a wee peek at this link:

  • THanks! That's helpful :)

  • Sorry Elizabeth. I thought I'd said thanks for posting that link. Not having the best of days 😬

    It will be interesting to see how this pans out and whether anyone else gets prescribed with Melatonin xx

  • I have asked for melatonin several times in the past both Rheumatologist and GP but told no, can't remember reasons. Fortunately I sleep well since a change in other treatments.

  • I think Melatonin is a naturally occuring chemical in the brain which helps tell your body when to sleep. But this can go wrong with people like us and so taking Melatonin helps your body naturally balance the sleep cycle. I took my first pill last night at 8.45 and by 9.45 I was almost asleep on the sofa! So I crawled into bed and slept pretty well - I only woke once and was able to go straight back to sleep. I hope it continues like this!!

  • Thanks so much for that info. That was along the lines of what I was thinking it was. What I was surprised about is that sleep depravation is one of the key symptoms of Fibro, yet you're the first person I've heard of that has been prescribed Melatonin.

    It makes so much sense to prescribe it. I had no idea it was even available on prescription!

    Would you mind giving me/us an update again tomorrow? I'm really interested to know how you get on. It's not the sleep you get but the quality of it, so it will be very interesting to see what effect it has.

    I hope it continues to help you xx

  • I am absolutely delighted that you now have a diagnosis, and I want to genuinely and sincerely wish you all the best with your medications.

    All my hopes and dreams for you

    Ken x :)

  • After reading about melatonin I'm now wondering why more of us aren't offered it.

  • Yes, I was thinking the same. I've never heard of anyone on the forum being prescribed it for at least the last 3-4 years x

  • It wasn't easy getting the Melatonin. My consultant wanted to prescribe me Amitriptyline but he knows I don't react well to drugs so he suggested I asked my GP for Melatonin. I asked 'so why can't you prescribe it?' and he replied "I'm not supposed to - I'm supposed to give you the drug' ! Thankfully my husband came to my appointment with me and he insisted that he prescribe me Melatonin! So I was lucky I guess. Makes you think though doesn't it? Doctors are under pressure to prescribe drugs - not natural alternatives. I slept pretty well last night so I hope the Melatonin continues to work for me!!

  • Yes, it does make you think. I sincerely hope that the Melatonin continues to work for you.

    See my reply above xx

  • That's great now you will get the real help, much needed.xx

  • As others have said, Amitriptyline is normally prescribed. I have taken it for years, sometimes in quite high doses, then tried stopping it completely but got worse so under protest went back on it. When I first started taking them I did sleep for England but not now & haven't for a long time.

    They definitely help with feeling relaxed and therefore help the muscle spasms but sleep, No. If I do manage to fall asleep at 3 a.m. I could jump which will wake me up with such a start that I'm wide awake & don't even know why. Then I eventually dose off again about an hour later and then be laying awake but feeling so tired and eventually have to get up because in so much pain.

    I would just love to sleep without waking up in pain. So yes please do let us know how the Melatonin goes.

    Jan x

  • Two of my friends tried getting a prescription for Melatonin over the past couple of days and had no luck. Their GP wouldn't prescribe it. But apparently you can buy it online at a reasonable price. I have to pay for prescriptions - they are over £8 now - and that was just for 30 capsules of 2mg Melatonin. My friend found she could buy 180 x 2mg caps online for around £11 - so that's probably better value!

  • It makes me really angry that our GPS wont prescribe melatonin,when in every other country it's readily sold over the pharmacy counter and even out in baby's milk to help their sleep routine. My son could only be prescribed it when he was a child because he suffers with adhd. Its ridiculous's a naturally occurring enzyme in our brains,but when we have less,then our sleep is affected. Can I ask how a person gets diagnoses with FM? HUBBY has all the symptoms and continuos muscle pains in parts of his body. Are there scans that can be done.regards x

  • I think the process of diagnosis is different for everyone. I already had a diagnosis of Lupus SLE so it was my Rheumatologist who told me he thought my newer symptoms were FM. However, it took a long time to get to the point of this post 'It's official' - I'd been complaining of nerve pain and burning sensations in my arms and legs for a couple of years. I was referred to Neurology for scans to rule out Vasculitis and other possible causes. When the scans revealed no physical cause - and blood tests from Rheumatology showed up no other illnesses - I was finally diagnosed with FM.

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