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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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  • Ellie1943
    Ellie1943 Livzrawr

    Posted

    Hi Livsrawr. The tests are to rule out other problems which might be present. Try seeing GP again and ask if he/she thinks it's FM. Push for a diagnoses as you need to get some treatment before you get more depressed. Lots of people on this forum can advise you. I'm not an expert, I've just watched someone else going through it!

    Best wishes Ellie. X

  • Jeanniep
    Jeanniep Livzrawr

    Posted

    Yes go to your doctors and they will go through the process with you as they will have to send you to rheumatologist, good luck xx.

  • Livzrawr
    Livzrawr

    Posted

    I've just been to see a rheumatologist and she said she didn't find anything that would suggest a connective tissue problem but possibly early signs of gout- though she isn't convinced since i'm 23 and i've been referred back... Feel like i'm getting nowhere with it all sad x
    • barbara93101
      barbara93101 Livzrawr

      Posted

      You Could possibly have fm, cause your bodys aching everywhere. You said that you Have shooting pains in your legs and they dont last that lõng. I töö have sharp shooting pains in my shins.they start to ache. Especially at night. Since your only,23-? I think that's how old you said you we're, I'm 52 you could have the onset of fm. I'd GET checked right away, to see. I have. Fm and osteoarthritis. Please get checked again. Cause your still young.
    • TeresaJS
      TeresaJS Livzrawr

      Posted

      Something that should be cecked too is post-viral symdrome. But the memory issue need a neurlogist. I know that being so yound you don't perhaps feel comfortable being assertive with your doctors but we have to, we must. wink
    • kaz_40
      kaz_40 Livzrawr

      Posted

      Keep fighting and pushing for answears dont give up, you will get their it just may take time. take care gentle hugs
  • kaz_40
    kaz_40 Livzrawr

    Posted

    Hi Livzrawr I was diagnosed last year after 10 years of trying to find out was wrong with me. I saw no end of specialists had loads of tests mris ct scan heart scan lung tests blood tests galore every test came back normal. My gp sent me to see a rheumatologist who did a pressure point test, you have 18 pressure point on different part of your body with fibro, I got the full 18, he also sent me for blood test and bone scan, they were to rule out rheumatoid arthritus.the tests came back the blood test showed low vitamin d levels. which my gp gave me vitamins d tablets. gps like to rule out other conditions, before sending you to see a rheumatologist, the rheumatologist is the person that normally diagnoses fibro.your gp needs to refer you to see a rheumatologist. My advice is go and see your gp mention fibro and see what they say. take care hope you get some answears soon
  • TeresaJS
    TeresaJS Livzrawr

    Posted

    Hi Liv,

    you're so young! I'm so sorry you're in such pain. The hypermobility can on itself, as far as I know, cause many of your symptoms. Can you sleep well? The reason I'm asking is because some experts say that's a criteria for diagnosing fibromyalgia by contrast with other with similar symptoms.

    Have you been to a neurologist, Liv? The memory issues should, in my view, be well assessed since you're too young for having them. Fibromyalgia is an exclusion diagnosis: once everything is ruled out you'll get yours.

    There's a med. called LDN - Low Dose Naltrexone (I've got a few posts here about it) that, once you've got a definite diagnosis could be an option for you. There's also alternative and complementary medicines. 

    Sleep well and take good care of yourself. X. 

  • christine26761
    christine26761 Livzrawr

    Posted

    Get a referral to see a Rhumotologist,..if you have to push for one... they are the ones who diagnose Fibro ..so well..be blessed Livzrawr..have a lovely day..:-) xxx
  • Bee70
    Bee70 Livzrawr

    Posted

    Hi Livzrawr

    Getting confirmation from a rheumatologist is the first thing to do. They may carry out further tests to rule out other options. 

    Gentle hugs. wink x

  • Livzrawr
    Livzrawr

    Posted

    I sleep for a good 7-8 hours a night but i feel like i haven't slept more than an hour when i've woken up!

    Are there any blood tests that would show fibro? Or is it purely based on symptoms and assessments? Thanks guys x

    • kaz_40
      kaz_40 Livzrawr

      Posted

      Hi theirs no blood tests for fibro, the rheumatologist does tests to check for rheumatoid arthritus which is bloods and a bone scan. He is does apressure point test on different parts of the body their are 18 pressure points in total. Fibro is diagnosed once all other conditions have been ruled out. take care  
    • christine26761
      christine26761 Livzrawr

      Posted

      Unfortunately there are no blood tests..many of us have had Fibro fir years and tears before diagnosis.  Personally I had Fibro for 10yrs before diagnosis and have had it 24 years post..diagnosis. Stress free is such a key to living with Fibro...chronic Fatigue Syndrome usually accompanies Fibro..????'!!! .I feel like a zombie too once I wake up, from a great long sleep everyday, but fortunately once I'm about I'm fine...but yes..I get quite tuckered out considering I sleep so well...do hooe things get better for you Livzrawr ...be blessed..have a lovely day..:-) xxx
  • CharliS
    CharliS Livzrawr

    Posted

    Hi Liv,

    Mine started at 21 and by 23 I was where you are now. I am 30 and have just been diagnosed.

    I agree with CHristine and Bee, get a referal to a Rhumatologist immidiately. The doctors think that because you are young it is nothing to worry about. For me it was especially bad because I was so active. They assume that if you are not lying in bed crying about it that it is not bad, they forget that when you are young your body just tolerates alot more strain and pain, but darling it escalates and it gets worse so the quicker you can get a handle on it and settle into a coping routine the better.

     

  • Livzrawr
    Livzrawr

    Posted

    Thank you guys, that's really helpful..

    At the moment i'm struggling with working.. I need to be on my feet for 7.5 hours per shift and my joints just cannot take it anymore!

    The company i work for aren't particularly understanding about it and thought by moving me to another shop and giving me a chair at work would help but getting up and down makes it worse! sad

    I've not got weird blurry vision and i'm starting to stutter so i'm terrified..

    • kaz_40
      kaz_40 Livzrawr

      Posted

      Hi Livzrawr  Unfortunatly some employers arnt understanding to their employees, but by law they have to make changes to support you with your condition.some of us have had to give up work not because we want too but because we were unable to cope and do the job no longer due to the condition. Have you considered trying to claim any benefits like PIP and ESA. I too suffer with blurry vision and speech problems. I would have a word with your gp about the stuttering just to rule out anything else it could be. take care
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