Fibromyalgia could it be something else

JulestheBat Community member Posts: 16 Connected
edited October 2018 in Cerebral Palsy Network
Hey all, 

Ive got Fibromyalgia, Depression, Social Anxiety, JHS and three herniated discs. 
Now the Fibromyalgia is getting worse. The pain, my mobility and the numbness.
Im back and forth with my GP. Who are usually helpful. 
My spinal consultant is also helpful, but Im starting to wonder a few things about my treatments.
If you have Fibro take all the meds and do pain management stuff (pacing and mindfulness etc) should it really be getting worse? 
I have a flare up of symptoms and with each flare up I dont fully recover. So Im wondering how do I talk to my GP about it? My consultant just gave me more pregablin. Im really questioning the Fibromyalgia diagnosis TBH. 
Also has anyone been diagnosed with Fibromyalgia and its turned out to be something else?
I appericate any feedback and any thoughts around this. Thank you x


  • FrannyP
    FrannyP Community member Posts: 1 Listener
    I was diagnosed with Rheumatoid and Osteoarthritis as well as my Fibro after a while. Need bloods and xrays.
  • markyboy
    markyboy Community member Posts: 367 Empowering
    The problem with Fibro is that there is no specific treatment what works for one does not work for others and the more stressed you are the worse the pain gets
    When you get a diagnosis it usually means the GP has exhausted all other medical conditions with the same symptoms so if he has concluded that you have Fibromyalgia i doubt it is something else 
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,635 Championing
    Hi @JulestheBat
    Im sorry to hear that you are struggling with fibromyalgia, there is lots of self help information on the NHS website about living with fibro:

    If you have fibromyalgia, there are several ways to change your lifestyle to help relieve your symptoms and make your condition easier to live with.
    Your GP, or another healthcare professional treating you, can offer advice and support about making these changes part of your everyday life.
    There are organisations to support people with fibromyalgia that may also be able to offer advice. Visit UK Fibromyalgia's support group section for a list of support groups across the country. You may also find it helpful to talk to other people with fibromyalgia on this online community.

    Below are some tips that may help relieve symptoms of fibromyalgia. 

    As fatigue (extreme tiredness) and pain are two of the main symptoms of fibromyalgia, you may find that you're not able to exercise as much as you'd like. However, an exercise programme specially suited to your condition can help you manage your symptoms and improve your overall health.

    Your GP or physiotherapist (healthcare professional trained in using physical techniques to promote healing) can design you a personal exercise programme, which is likely to involve a mixture of aerobic and strengthening exercises.

    If you have fibromyalgia, it's important to regularly take time to relax or practice relaxation techniques. Stress can make your symptoms worse or cause them to flare up more often. It could also increase your chances of developing depression.

    Better sleeping habits
    Fibromyalgia can make it difficult to fall asleep or stay asleep (known as insomnia). If you have problems sleeping, it may help to:
    • get up at the same time every morning
    • try to relax before going to bed
    • try to create a bedtime routine, such as taking a bath and drinking a warm, milky drink every night
    • avoid caffeine, nicotine and alcohol before going to bed
    • avoid eating a heavy meal late at night
    • make sure your bedroom is a comfortable temperature, and is quiet and dark
    • avoid checking the time throughout the night
  • siobhan1
    siobhan1 Community member Posts: 79 Empowering
    I was diagnosed with fibromyalgia but then I've had diagnoses of Ehlers Danlos Syndrome which override the first rheumatological diagnosis. I found that a lot of my symptoms were put down as "Chronic Widespread Pain" or Fibromyalgia (the literal meaning of which I was later told was pain of an unknown origin). I notice that you say you have JHS which is very similar to EDS. Could your pains be caused by the JHS and possibly osteoarthritis as a result of this? Unfortunately the treatment is very much the same as for fibro. In fact due to lack of support for EDS/JHS in my area I have to use fibro support groups. 
  • cokeen43
    cokeen43 Community member Posts: 23 Connected
    I really wish drs would stop labelling us, thety do not exoeriece any of it, unless they actually experiance how we suffer, its all speculation, like everything else in this world we live
  • marmalade
    marmalade Community member Posts: 69 Empowering
    Hi.  I totally understand how you feel i too began to question my diagnosis especially when my hair began to fall out.  I was re referred back to rheumatology and also received some xrays as i was sure i was walking on broken bones.  However, i was rassured that it was the fibromyalgia.  You say after every flare up you cant get back to where you were before.  I think this true for many people  and sometimes the flare ups last longer than we think and before we are finished we have another on top of that so it all gets a bit messy.  
    That said, if you genuinely feel there might be something else then it is your right to ask for a rereferral back to the rheumatologist to have things reviewed.  Dont suffer in silence.  Good luck 
  • Tra7cy
    Tra7cy Community member Posts: 33 Connected
    Hi hope you (relatively) well. I've been diagnosed as having L5 PARS DEFECT, JHS, RA, IBS, COPD, osteoarthritis, asthma and other stuff. I think any medical practitioner is a bit flummoxed by our conditions cos they don't understand the pain we feel. I can sleep for 3 or 4 days only getting up for a wee, painkillers don't give much relief but keep on trying. We should just be there for each other, as I don't think there's much help else, keep well peeps xxx
  • Tra7cy
    Tra7cy Community member Posts: 33 Connected
    Btw that took an hour to post lol xx