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I think i have fibromyalgia, what do i do?

Posted , 8 users are following.

Livzrawr
Livzrawr

I'm fairly certain i have Fibromyalgia. I get headaches and have done for years, all my joints hurt (though i have recently been properly diagnosed with hypermobility syndrome), random points on my body hurt to press such as my lower back, my palms and my stomach in certain places, every now and then i get random shooting pains in my leg, arm or ribs and then after 15 seconds it's gone like it never happened!

I've been tested for everything under the sun, i can't seem to remember dates and times and that seems to be getting worse like brain fog so they tested my thyroid and all normal..

I'm really at my wits end, i'm 23 and i don't remember the last day i was pain free.. sad

Any advice? Thanks! x

1 like, 25 replies

25 Replies

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  • Bluebell21
    Bluebell21 Livzrawr

    Posted

    Hello Livzrawr

    Have you thought about Chronic Fatigue Syndrome? A Rheumatologist as you know is the person who would diagnose Fibromyalgia and as you have already seen one, you could ask for a second opinion.

    I have had Fibro and Chronic Fatigue Syndrome since I was 20.  I am now 52.

    The Trigger Point test done by the Rheumatologist is usually quite conclusive (about as conclusive as you are going to get with Fibro).

    Lack of sleep and pain are usually the main factors of Fibro so that is why I am wondering about CFS.

    It's just a thought?

    As I have had Fibro for over 30 years I have done a lot of research.  I also have 27 other symptoms that accompany my Fibro, which is another reason I am thinking that you possibly do not have Fibro.

    I would be happy to chat with you some more if you would like.

    Gentle hugs

    Bluebell x

  • Livzrawr
    Livzrawr

    Posted

    Well i was in hospital over the weekend with stroke-like symptoms.. They said they were going to do a head scan and then changed their minds and discharged me! rolleyes

    I called the drs this morning and mentioned fibro and they said they'd now think about looking into it (finally!) as they're running out of things to test for..

    I've already applied for PIP but im not optimistic especially after what i've read about other peoples experiences... sad 

    • Bee70
      Bee70 Livzrawr

      Posted

      Oh poor you.  Hope your feeling better since the weekend.

      Gentle hugs wink x

    • kaz_40
      kaz_40 Livzrawr

      Posted

      Hi Livzrawr so sorry to hear you were in hospital at the week end. how are you feeling now.? The same happened to me last year I was rushed into hospital with stroke symptoms it was very frightening.I was finally diagnosed last year after 10  years of many tests not knowing what was wrong with me.finally got sent to see a rheumatologist he diagnosed fibro after yet more tests. hopefully now your gp will send you to see a rheumatologist and hopefully you should get your answear as to whether its fibro or not.I wasnt hopeful when I applied for pip. my husband filled in my forms for me. Then I had a face to face consultation at home with a health proffessional. she was very nice the consultation took 1hr. she goes through each question on the form checking each answear you gave.then she writes a report which then goes to the dwp.its they who decide whether you get it or not. take care gentle hugs 
    • Livzrawr
      Livzrawr kaz_40

      Posted

      Thanks Kaz, i'm feeling a bit better but my migraines have just kicked in and i'm feeling horrendous with that + joint pain= a very irritated me!

      I'm glad you finally got your diagnosis! I hope i'll be just as lucky..

      I've asked and the dr will see me next week in regards to fibro and hopefully i'll get a referral soon and i can see if it is or not- even if it's just to rule it out!

      Work are also being awkward, saying they may not be able to accomodate me anymore and i might have to leave- but i don't know my rights or anything.. sad 

      Disability sucks. I'd give anything to go pain free for a day.. I'm 23, how sad is that.. sad x

    • Bluebell21
      Bluebell21 Livzrawr

      Posted

      Hi

      Have you thought about going to see someone at the CAB for some advice on your rights at work?

      Also you could get in touch with Welfare Rights. They should definitely be able to help you. 

      I was bullied massively at work and I am 52!  My boss told me he wasn't a charity and unless I got into work there wouldn't be a job there for me anymore. 

      Like you I so long for a pain free day

      Sending you love and hugs xx

    • Livzrawr
      Livzrawr Bluebell21

      Posted

      Hey Bluebell,

      Sorry to hear you were bullied at work- It's disgusting isn't it!

      Thank you for your tips, i'm going to see what work say in the next few days and then maybe have to take it up with someone else if they try to dismiss me..

      Maybe one day we'll be pain free? smile

      Love and hugs xx

    • Bluebell21
      Bluebell21 Livzrawr

      Posted

      It is disgusting, and so sad it still happens in 2015. 

      We can but hope one day we'll be pain free smile

      Love & hugs xx

    • kaz_40
      kaz_40 Livzrawr

      Posted

      I would go to the citizans advice beauru they should be able to give you your rights work wise. by law every employer should make allowences for you so you are able to do your job. if they dont they are breaking the law. I  would seek advice from the CAB hope you soon get a referal and you find out whether its fibro or not. take care
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