1. Community
  2. Bones, joints and muscles
  3. Fibromyalgia Syndrome

I think I may have Fibromyalgia...

Posted , 6 users are following.

NadineHope
NadineHope

I've been struggling for quite a while. Three years maybe now and I'm feeling more and most like all the things going wrong are pointing to this possible diagnosis.

I have no energy, never wake up rested and suffer from stiffness. I have jaw pain for which I sleep with a splint, I have tinnitus, IBS, regular/constant neck pain, shoulder and heel pain and now on my second bout of trochanteric bursitis in 18 months.

I've been getting generally worse. In order to function, I have to lie down as soon as I get home from work. I rest/sleep for 2 hours each day before I can even contemplate cooking dinner. I spend my weekends resting and could sleep all day. It's robbing me and my son of normal family life. Every outing is an effort which requires a day to "recover" before I sum up energy out of no where to do another task and it's all making me feel quite low as I don't see how any of this is ever going to improve.

Could this be Fybromyalgia? What are your symptoms, journey to diagnosis? Do you have any advice to help me cope?

0 likes, 5 replies

5 Replies

  • Belldrum
    Belldrum NadineHope

    Posted

    First of all NadineHope, welcome to the forum I'm glad you found us.

    The symptoms you are describing could well be Fibromyalgia. I think we all struggle with the pain each day however like you the fatigue is the 'killer' for me. I am supposed to do 12 hour shifts but due to this chronic fatigue my boss has let me do 9.5 hour shifts but I still complete my weekly work hours by doing an extra shift on my 3 day week. This has been happening since Nov last year, when I was finally diagnosed with Fibro but she has hinted that she wants me back on 12 hour shifts which I don't feel able to do. Think this is a hurdle I must address sooner rather than later.

    As you're probably aware there is no actual 'test' for Fibro however a lot of your symptoms are indicating that you may be a sufferer. I have had back pain since 2010 due to an injury at work & so any pain I have reported to my gp has been blamed on my back injury. The last 18 months I have been having major bone pain especially in my lower legs - my gp blamed this on my back!!! To cut a long story short I was eventually referred to a rheumatologist & pain clinic. both have been brilliant; the rheumatologist x-rayed my lower legs & also identified the tender points on my body, which are classic fibromyalgia areas.

    i would urge you to pester your gp and demand a referral to a rheumatologist & pain clinic; have you got a good gp? Are you on any pain melds at the moment?

    i hope my story & little advice helps you get a diagnosis.

    Take Care & (((Big Hugs))) xx

    • NadineHope
      NadineHope Belldrum

      Posted

      Hi Belldrum, thank you for your story.

      Apart from paracetamol and ibuprofen I'm not on any painkillers. I had a steroid injection about a month ago into my hip and I am coping quite well although I seem to have that achy flu pain all the time these days. I'm back at work (primary school) tomorrow after having half term break. I literally did nothing all week but still feel exhausted.

      I seem to see a different GP each time and some of the symptoms were first treated up to 5 years ago (tinnitus - I gave up on medication as too many side effects, IBS & jaw) but only recently starting to realise -as more issues arise - that they form a whole which I wonder could be Fibro... often have the feeling I'm inconveniencing GPs so have not come to them to say: Look I have all these symptoms, do these as a whole ring a bell?

      Thank you for your encouragement, I will soon go back and discuss. It takes courage... the thought of him dismissing it all due to my current trochanteric bursitis is what's holding me back!

      I hope your boss will be understanding and allow you the flexibility to enable you to carry on working and cope!!

      Off for a little lie down... rolleyes xxx

  • Bee70
    Bee70 NadineHope

    Posted

    Hi Nadine

    Poor you, yeah it sounds like fibro.  You need to get confirmation from a rheumatologist. Also ask your GP to refer you for Cognitive Behaviour Therapy (CBT) this is a mindfulness thought process that can help you deal with the pains too.

    Hope you find the advise you need on this forum. You are not alone, we are all here to support you. wink x

    • NadineHope
      NadineHope Bee70

      Posted

      Thank you Bee70,

      CBT sounds intriguing. I will look it up. It may well be valuable as coping strategies to make it through the day. We can't rely just on medication... my heart goes haywire with any codeine meds I found out so I've used heat and ice and plenty of rest (just never enough). Thank you for suggesting mindfulness.

      Take care x

  • elaine85769
    elaine85769 NadineHope

    Posted

    Hi NadineHope,

    You described me totally.Especially, the second paragraph.However,until the end that does not apply to me.

    I have been suffering with Fibrom for many years and my symptoms have not

    changed but has progressed as I've gotten older.I am  t i r e d after every thing

    I do.I have to lie down after showers,going to the store,quick trip to library.Any and all but I try to keep going-I worry somrtimes that my family probably think its really not that bad-but IT is.

    As long as you can take the breaks to perform daily life- just do it and adjust

    when you cannot.It can be a struggle.

    And I was going to ask if anyone had Jaw,Ear pain today,so glad you addressed

    it.

    Elaine,

    .

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.