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Not sure if it's Chronic Fatigue Syndrome, Fibromyalgia or Polymyalgia Rheumatica?

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anna41347
anna41347

Hello everyone! I am really hoping someone kind out there could shead some light or even comfort me a bit here. I am feeling a bit desperate now...

The story so far,and I'll try to keep it as short as poss:

I had a period of great stress in April, following a move into a new flat. within days my hands and ankles started to hurt to the point that I couldn't walk to the bathroom in the morning and hands felt like they'd been clenched all night (and still do). I had some severe cold sweats where my clothes would be soaked in minutes, severe sore throat and a thirst like i have never experienced in my life (I'm a 36 year old female from kent) and severe tiredness. I quit drinking alcohol and smoking and over about 2,5 months of rest the symptoms almost went away apart from the stiff hands and occasional fatigue and a shakey feeling where i need to lay down. 

Now 2 weeks ago a sore throat started after another period of stress and some alcohol and cigarettes (two nights out), the sore hands are worsening, my sore ankes are back, i have a severly sore throat with white spots on the back of my throat, severe fatigue and some thirst and itchyness around my eyes, but not as bad as before. 

My bloods have been taken over and over and I have had a CT scan and ultrasounds of my liver, pancreas, womb. It came back that I have some low level of inflamation in my bloods, elevated liver enzymes, high cholestrol and a small amount of fat on my liver and kidney stones.

I am a healthy weight, eat a very healthy diet and exercise moderately. I get sun and also take a vit d supplement along with folic acid (as i am trying to get pregnant for the first time), milk thistle, borage oil and a probiotic daily. I had glandular fever as a teenager, very badly and I also have a family history of auto-immune problems. Mum has mialitis of the spine, auntie (mums sister) fybromyalgia and nan has sjogrens syndrome and both nans have arthritis. 

If anyone can relate, shed some light or advise, I would be incredibly grateful. It's seriously getting me down.

3 likes, 65 replies

65 Replies

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  • Anhaga
    Anhaga anna41347

    Posted

    I am so glad you find this site helpful.  About ten days ago I couldn't sleep (strong coffee after 8 pm).  For several days I had been feeling the return of my symptoms despite following doctor's instructions carefully so went online to find out if it would be safe to increase my dosage again without having to make appointment with the doctor.  I found this forum and it was a game changer.  For the first time I didn't feel alone, and I learned so much helpful information.  Now I know that somewhere in the world there are people on the same journey.  
    • anna41347
      anna41347 Anhaga

      Posted

      It really makes you appreciated the internet doesn't it? I hope that your symptoms pass as quickly as possible and you feel better soon x
  • pauline36422
    pauline36422 anna41347

    Posted

    yes eileen does need to write  a book the  sirst installment  was  very interesting.

       but  then again   if she does, she wont  have time to write on this forum then we will all be     up the  swanny      so to speak.     could not do without here  xx

    #

    • anna41347
      anna41347 pauline36422

      Posted

      haha - yes seems like eileen knows her stuff. it's been a great help..
    • EileenH
      EileenH pauline36422

      Posted

      You could buy the other book I've contributed to - available from the PMRGCA UK northeast support site. Living with PMR & GCA - the distilled wisdom of the forums...
  • pauline36422
    pauline36422 anna41347

    Posted

    eileen is available  as  download  type  or is it  just in  regular book form   thought i could  download and read it on my  hols  next monday x

     

    • EileenH
      EileenH pauline36422

      Posted

      Regular book only I'm afraid. They send it out to the UK pretty quickly though. PM lodger for more info...
    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      Eileen

      It has gone out to the States, Canada, New Zealand as well as some of the European Countries.

      We only issued it in May with a print run of 500. After distributing to our members free of charge and keeping back 50 for new members,  I now have a stock of 80 left and it is only the end of August and not one person has said it is rubbish, in fact 'thank you'  have rolled in .  We   have been asked if it is possible to expand it and take in other subjects as it is easy to understand.  

      I often think how we only did the booklet because it meant we did not have to print off reams of A4 Information papers for our new members.

      If Jack Robson2, (John's son - John can't run this year although his PMR is in remission) so Jack is running in the Great North Run for PMR&GCA uk North East Support on 13 Sept, if  more is donated than he has set as his target - perhaps we will have some spare for additions to existing booklet and/or a re-print.

      By the way, the two reduction plans are being sent out to at least 3 enquiries every day.  Keeps us ancient brits on our toes. rolleyes

      .

    • EileenH
      EileenH lodgerUK_NE

      Posted

      Oh dear - better stop advertising it for a bit then! I had 2 - I only have my own now as I gave the other to a nurse who works in AMAU (Acute Medical Assessment Unit) who said - "We've diagnosed GCA patients...". She was thrilled to bits!

      Wonder where we could look for money to do another run - or can we do a version online for download at a small charge to fund more real books?

    • constance.de
      constance.de EileenH

      Posted

      I think most people on here would contribute to something so worthwhile.  A download would be convenient to all of us.
  • pauline36422
    pauline36422 anna41347

    Posted

    tried to buy the book  but its on adobe and my laptop is playing up so   cannot   do it

    grrrr

  • anna41347
    anna41347

    Posted

    Update: I am not quite sure how this will work out or whether I need to start a new thread, but here it goes. I hope some of you are out there still. 

    I went to the Rheumatologist and he was a bit brutal. I am in Germany and it was very matter of fact - exactly as you'd imagine! they took blood, he felt my neck and asked me some quite basic questions. I should have said more but was afraid that I would come across as a hypochondriac, he was quite dismissive and seemed agitated by me. Now I realise how stupid that was as I missed me chance.

    His findings were as follows: High ANA 1:800 (speckled) and raised Gamma GT 48. And positive for 7 out of 15. But I don't know what the last bit means.

    He found a lot of broken blood vessels all over my body.

    He said that I need to go to the neurologist, get a heart scan, an MRI and get therapy for some issues that happened in my childhood. So I have appointments for all of this, and following that my GP sent me to get a colonoscopy and next week I'll have the endoscopy. Colonoscopy findings were 3 polyps removed and one pre cancerous one. all removed. 

    Since I last wrote I have been suffering still with the stiff and numb fingers when i wake up from sleep or from naps. I have very dark rings around my eyes. Lots of pain in my upper right quadrant and that moves around to the right side back. However now it itches and tingles, but that itching is isolated and not anywhere else. I also have had low blood pressure and been very weak. I still suffer with dry mouth and now a clunking, clicking jaw constantly. I still also tend to get a sore throat and feel flu like when I am feeling at my worst. Oh and a few more UTI's and constant thrush and another really bad chest infection. 

    And the thing that is the hardest to cope with is the depression and anxiety which is getting worse now as I really do not know what to do now and the Rheuma doc said that he'll see me again in 1 year and my GP seems to be at a loss as to what the problem is.. I am tempted to try anti depressents or valium but I want to give my liver a chance.

    Anyone out there can provide some advice or support will be a big help..

    Thanks in advance, 

    Anna

     

  • pauline98347
    pauline98347 anna41347

    Posted

    it sounds like you have fibromyalgia, as polymyaliga is detectable in your blood, and recognised and treated with steroids. This 'syndrone' causes many symptoms, pain being most prevelant, but also fatigue, irritable bowel, and even throat and chest problems, although the white lumps on the throat sounds like an infection, didn't your doctor notice this? Yoga and relaxation exercises might help, and treats like a sauna and massage occasionally will brighten your spirits, and a happy person is a healthy person. is it?
    • pauline98347
      pauline98347

      Posted

      by the way I have fibromyalgia, and the accompaning symptoms, but I some times have good days, and even periods of relative pain free. So don't dispare.
    • anna41347
      anna41347 pauline98347

      Posted

      Thanks Pauline for getting back to me.. He did treat the white spots on my throat with antibiotics..  I hope you are having a good patch at the moment. best wishes, Anna
    • EileenH
      EileenH pauline98347

      Posted

      PMR is not detectable in blood reliably, there is no specific test, that's half the problem - all the blood tests tell you is that there is inflammation in the body somewhere and in 1 in 5 patients there is no raised ESR/CRP and that can really confuse the medics if they haven't come across it before. There are a lot of overlaps between PMR and fibro - the most significant differences are that fibro doesn't cause raised ESR/CRP and, above all, that PMR responds to corticosteroids, fibro doesn't - but it is possible to have both at the same time.

      I have to say - I've never come across irritable bowel in PMR, irritable bladder, yes.

       

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