Rheumatologist says I have mild fibromyalgia

Hi there everyone hope people are doing well and looking forward to Christmas. I am wondering if anyone else out there has 'mild fibromyalgia'?

I posted originally back in the summer, and it's now been 5 months I've been having unexplained bodily aches and pains following having an IUD contraceptive fitted for the first time in July (I had it taken out a week later, but the mostly back and leg dull aches and heaviness continued) I'd convinced myself for months I had Fibro and was ready for the worst.

After GP doing non-eventful bloods and back MRI and months of waiting to get a referral, I finally saw the doctor at the hospital last week, and after listening to my symptoms and doing the tender point test (which by the way, he very lightly touched me in the areas. I was expecting serious poking and pressure! I didn't react at all to any) said I have 'bits of fibro', and 'mild fibro' - didn't formally diagnose me. He said even he has had elements of fibro before in times of stress. He was very nice and relaxed, said not to worry and to try and get on with life and not stress (I am able to live a fairly normal life thankfully apart from the annoyingness of the aches because I don't currently have any sleep issues and the pain isn't too bad, but have been very worried about it all and wondering if it could get worse) - doing more blood tests and a nuclear bone scan to rule out any underlying issues.

Curiously he said it would likely 'go away in time' - something I have never heard before. Now I have to trust this man, a senior Rheumatologist in London for over 20 years - but it did surprise me. I suppose I do have it mildly, with seemingly no underlying conditions, or sleep issues. I had a shock to my system with the IUD, and had been having quite a stressful year, plus worrying about whether I had Fibro or some kind of IUD poisoning massively gave me health anxiety over the summer - so maybe this all contributed.

I'm trying to be upbeat and not dwell and Google stuff, have been enjoying massages and trying to enjoy every day - but I am curious to see what others reckon. Remember that I don't have any other health complications.

Thanks

Lottie

7 Replies

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  • Hi Lottie

    Welcome to the forum :)

    Take a peek at our webiste. You will find a wealth of information about Fibromyalgia on there fmauk.org

    I have to say that after having been diagnosed with Fibromyalgia and ME in 1980 and living with it for 36 years, and having been on this forum for nearly 5 years I have learned quite a lot about the condition.

    I 100 per cent agree that it is possible to have mild Fibromyalgia. If you look back at some of my replies you will see that in my humble opinion I do believe that people with Fibro do suffer with it to varying degrees.

    Some people are able to manage to have a normal life, carrying on working and manage their condition by themselves. Others at the other end of the scale are in so much pain they can barely manage to get through the day.

    I would never be even able to get out of bed without the huge amount of meds I have to take for 24/7 pain.

    This is only my personal opinion, but I believe that a trauma of some kind triggers Fibromyalgia and then each further trauma can make the condition worse.

    I managed to work for 34 years, have 2 children and work full time until due to a massive trauma I ended up having to give up work.

    These are only my thoughts and I am not a medical professional.

    Please do stay with us on the forum. You will learn so much from our other members and can ask as many questions as you like. Also please join in with any fun that is going on. You will be made to feel very welcome by everyone.

    If you need any help at all navigating your way around the forum, please let me know and I will be more than happy to help you.

    Wishing you much peace

    Lu x

    Administrator

  • Hi Lottie,

    Great post Lu! Totally agree but one thing I would add is that not only is fibro a rollercoaster of good and bad days but that for some, i.e. me it has been a progressive illness. This is my personal opinion and goes against the Professional Medical view on fibro.

    The one thing I do know is that it affects us all differently in symptoms and as Lu said to varying degrees but also different daily. I call it the Dr Zeuss illness as it sounds as unbelievable as his wonderful children's books. Truly only another fibromite understands what you are going through which is one of the reasons I love this site.

    I would take one day at a time and try not to worry about it, treat the symptoms of any pain and discomfort. Fibro is really just a list, a long varied list, of similar symptoms.

    Have a cool yule😎

    Patrick x

  • Welcome to posting. I am with BlueMermaid3 that certain events can seem to trigger a fibro flare and that is the first time we really realise there is something wrong.

    I reckon looking back that I may have had mild fibro all my life but then several very stressful events right on top of one another made it suddenly flare and get much worse.

    Many on our forum manage to hold down a job just feeling under par and either email taking no meds or just a low grade painkiller. Others like Lu suffer all the time and life is a real struggle whereas even though I am slowly getting worse but I like Lu have other health problems is in what I call the mid ground.

    If I was like you (as I used to be) before life events came in the way I would just eat healthily, take good exercise, rest when I can and try to avoid as much stress as you can and really carry on and live life normally. Good luck.x

  • Hi lottiewest , I do believe you can have mild fibro. I was diagnosed in 1999 and at times I feel mine could be mild as far as pain....never been told that but is my opinion.When it comes to anxiety and depression that's a bit different for me, I would say I have severe fibro. As I've learned on this site we are all different.Take care and hope your case stays mild . Peck.🐤

  • Hi lottiewest

    I am so genuinely sorry to read this and I have to agree with BlueMermaid3 and many folk struggle all the time with incredible pain and others have it more mild and work normally. I personally have a great many other medical conditions to contend with which I perosnally feel have made my Fibro worse for me.

    I want to sincerely wish you all the best of luck my friend, and please take care of yourself.

    All my hopes and dreams for you

    Ken

  • Thanks everyone for your helpful and speedy responses! This forum seems really kind and helpful. Initially a little scared to use it as everyone's experience is different and I tend to be a glass half empty person.

    Im a worrier and I would say the main thing for me isn't so much the current pain, but worrying if it will get worse. I am 29 and want to have a family at some point in the future, and if my body freaked out at having such a minor procedure then what the hell will it react like after birth.... or a fall.... or an accident. I guess reducing my overall stress and worry will lessen the impact should these events ever happen.

    Speak soon

  • I find this interesting as my symptoms also started after have marina coil fitted. I had intense headaches lasting several months which spread to my neck. Gradually over several years more muscles now affected. I am still able to work and lead a normal life but my daughter now has it really badly.

    I find Linnex really helpful. Google it!

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