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New on this forum and not yet diagnosed and unsure what to do next.

Posted , 4 users are following.

Twizzy
Twizzy

Hi, I've just joined and hope I'm in the right forum, currently self diagnosing. Please bare with me as might be a bit of waffle.

Last May I came down with a cold that since then I've got better but never shifted it. I constantly get ear ache, sore throats, headaches and lose my voice and such. I also notices I was feeling more tired than usual and never seemed to actually wake up. A short while after my back started playing up again and my alopecia came back. I started struggling to walk to the point where now, going for a shower has to be super quick because I can't stand for long, and cooking dinner is a no go.

I went to my dr who put me for physio and sleep clinic, the latter which I had to cancel as I've 4 children and something always is going on with them. I was re submitted for sleep clinic Which I've still not heard from despite going back.

I've progressively got worse with exhaustion, pain, everything now hurts. My hips to my knees hurt when pressed, my back is never pain free, my outer arms hurt when pressed and my feet hurt as if I've walked miles. I've raynauds in my right foot to my knee, my hips and jaw locks, I wake up stiff and sore and .my quality of life has dramatically changed. I keep going back to the dr who has just upped my pain meds and won't do anything until I've been to the sleep clinic as she's sure it's sleep apnoea. So I went to another dr for a second opinion who gave me more blood tests, this time for rheumatoid arthritis as she thinks it may be connected tissue disorder. My esr came back as 36 which, as I understand it is a little high, yet I've heard nothing from the dr and feel I'm in limbo.

I've no idea what's wrong with me, I've been researching all my symptoms, which I've more than I can remember at times, and the closest I come to is fibro.

Am I way off the mark? Or am I at least in the right direction? What can I do next to get help as I can't keep a going on like this.

Thank you for reading. X

1 like, 6 replies

6 Replies

  • Bee70
    Bee70 Twizzy

    Posted

    Hi Twizzy,

    With Fibro it can be different experiences for all.  I would advice that you get confirmation from your rhuematologist. wink x

    • Twizzy
      Twizzy Bee70

      Posted

      Thank you, I'm at the end of my tether with it, the not knowing bit. Whatever is up has really ballsed things up.😊I've just no idea who to talk to.

      just got an appointment with a rheumatologist but it's not until September. 😊Xx

  • Bee70
    Bee70 Twizzy

    Posted

    You are not alone, on this forum you will get lots of support and advice. I understand that it's frustrating but stressing over it too will make the pains worse. Taking a day at a time and trying to be stress free is the key way forward unfortunately, until you don't get a diagnosis and you can't assume either it's going to be tough.  I have been suffering since 1993 and only got diagnosed with Fibro Aug 2014.  Not saying it's going to take that long for you. Fibro was not really known of back in those days.  Joining this forum in March 2015, I realised I wasn't alone.  The support I received from this group was amazing. Cognitive Behaviour Therpay (CBT) helped be over the past few months with the process of mindfulness in the thought process. Maybe this is something that you may consider to help you.

    Take care and gentle hugs wink x

  • Maggers
    Maggers Twizzy

    Posted

    I echo Bee.  Might be worth a phone call to the rheumatology dept and ask to be put on a cancellation list. I did it and was phoned one morning with an appointment for that afternoon. Keep a diary of symptoms to see if there is a pattern.  I have seen improvement with cutting out all refined sugars and gluten.  Don't expect an instant diagnosis Fibro is  usually only diagnosed once everything else is ruled out.  I have been suffering since the 80s and was only finally diagnosed a couple of months ago.

    Hot baths with epsom salts helps some of us. Nobody is saying it is easy because it is not.  Everyone's fibro is different. Some days I can't use my arms at all and sometimes I could paint and write all day without a problem, likewise with walking sometimes I can't reach the kitchen and other days the dogs legs are walked off!  Chin up there are plenty of people on the forum with a listening ear and some kindly advice to help you feel you are not alone.  Take care

  • bronwyn97278
    bronwyn97278 Twizzy

    Posted

    Hi Twizzy;  love the name.....as others' have said....yes the "waiting game" is the hardest....not actually having an official diagnosis, but you, yourself knowing in your gut that this is what is wrong......I have two suggestions that I think may help.....1) tell your GP that you are very emotional, and ask for Amitriptylline....it will help with your emotions and your pain...2)  can you afford to see a Rhuematologist privately...it may only be for 1 or 2 visits....and if more, then get transferred to a Public Rhuemy for follow-ups?....before you see your Rhuematologist, go through the Symptom Checker, and tick off ALL the symptoms that you have.  Also  keeping a diary of what/when/where you have pain, and in relation to what day/month/the weather and your activities at the time...Most importantly,   research for a Rhuematologist who knows about Fibro/CFS....you should be able to find one on the net in your area (I found my Psychologist that way).....the other treatment that I find helps me Immensely, is continual physio/massages.....the physio, being in the medical profession, can back up your description of your pain and where it is hurting (if you can find one why also understands Fibro, get them to write an accompanying letter for you to take with you)....hoping this is helpful, and keep on letting us know how you are getting on....Bron
  • Twizzy
    Twizzy

    Posted

    Thank you, all of you. Having people to talk to helps. Just got a rheumatologist appointment for September so plenty of time to prepare. I didn't think about researching a rheumatologist but that's an excellent idea.

    Thanks xx

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