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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 know you will get lots of helpful advice from others in this forum.  I'd like to suggest you reconsider the herbal supplements you are taking in case you are reacting to them in some way.  I hope you find some help soon.  It is sooo discouraging to be in pain for a long time.
    • anna41347
      anna41347 Anhaga

      Posted

      Thank you for getting back to me Anhaga. I will definitely look into that. I was thinking of stopping all the suppliments for a bit to see what happens. I have cut dairy out of my diet recently too. 
    • anna41347
      anna41347 lodgerUK_NE

      Posted

      Thanks for getting back to me LodgerUK, having people to share this with is already helping with the stress. I have been feeling that people think I am making this up and that I am using it as an excuse to get out of things. It's far from that. The more I feel that from people though, and friends get fed up of me cancelling last minute, the more stress builds. But I have had to start putting myself first now and I have to accept I might lose friends from being unreliable. I just know that when a wave of this comes over, I have to go to bed. I have even closed facebook and switch my phone off regularly to get complete peace. re: the dairy - I stopped the dairy as a vegan friend recommended it. I always had butter and free range organic eggs and milk and eat lots of fruit and vegetables and oily fish. Now I am having coconut oil and milk instead on the dairy. I will defintely look into Bowen Therapy, thank you for the recommendation. 
  • ptolemy
    ptolemy anna41347

    Posted

    Hi Anna, what are the medics saying is wrong? They seem to have done quite a lot of tests. Did they check for rheumatoid arthritis? It does not sound like you have polymyalgia though. Was your vitamin D level checked? 
    • anna41347
      anna41347 ptolemy

      Posted

      Hi there ptolemy, thanks very much for responding. The docs have said that they cannot find anything wrong. They're keeping an eye on my liver function as the enzymes are up and there is fat, but apart from that they have told me that they think it's stress related and just gave me antibiotics for my throat. I have had full blood work done 4 or 5 times over 6 months, testing for signs of autoimmune disease but nothing showed up, apart from some mild inflamation and the liver enzymes raised + cholestrol up slightly. Not sure if RA was included in that though. I have an appointment in Oct with a specialist in autoimmune disease at a good hospital. I made that off my own back that is my gut feeling or potentially ME. I haven't had my vit d levels checked though, but I have just started taking a suppliment daily 1000 iu vit D as I thought that might help...
    • ptolemy
      ptolemy anna41347

      Posted

      RA is an auto immune disease as is ME, so it should be interesting what the specialist says. People can suffer for literally years sometimes with undiagnosed auto immune diseases.
    • constance.de
      constance.de anna41347

      Posted

      A friend of mine had ME after a very bad bout of flu.  Her symptoms were very similar to yours.  She really was ill and it took a long time for her to get back to normal.

      Hope you sort your problem out very soon.  There might even be an ME forum on this site you could try.

  • tony92243
    tony92243 anna41347

    Posted

    Hi Anna, I'm new to the site got diagnosed with Polymyalgia 3 days ago and still getting my head round it all. I can sense your frustration and distress and hope you get clarity so you can start to sort out your life. In my case about 4 weeks ago I started to experience pain in my feet an shoulders then thighs hips knees neck wrists and back! Pretty much everywhere. To cut a long story I went to my GP twice to try to get medication for the appalling pain I was in, first visit I only got offered blood tests in 10 days, but went back following day in tears at the pain and unable to stand up or walk. This time I was given steroids (predisolone) on a very high dose 8 x 5 mg a day and literally 2 hours latter the pain faded away! The diagnosis was based on the dramatic success of the steroids and my age. I was using other painkillers for different things but these didn't have any effect. Think what I'm trying to say Anna in moments of desperation good things can happen, keep looking into getting the correct DX think I've been lucky to find the right meds (I hope).😄
    • anna41347
      anna41347 tony92243

      Posted

      Hi Tony, thanks so much for your message. It sure is comforting to know that I can talk to people about this and others out there understand my frustration. I actually woke up feeling more positive this morning because of these messages. I feel a step closer to getting a disagnosis as I know what to ask to be tested for now and can explaiin my symptoms better to the doctor. I wish you all the best with your health and thanks again for your words of encouragement ! smile
    • tony92243
      tony92243 constance.de

      Posted

      Thx Constance! Beginning to understand things a little more on this weird and unpredictable journey 😣.
    • EileenH
      EileenH tony92243

      Posted

      That is a very high starting dose for PMR - 15mg is generally regarded as enough unless you are large/heavy so I do hope your GP has reduced that dose considerably otherwise you are a risk of more side effects than is necessary.

      The main disadvantage of starting at such a high dose is that other things will respond to high doses - only PMR responds so dramatically to the moderate doses. 

      But now you are pretty much pain-free you can concentrate on reducing fairly fast before your body gets used to the high dose. There is actually no reason why you shouldn't drop straight away to 20mg after just a few days. 40mg is generally used in GCA but if there are no symptoms to suggest that you don't need that much.

    • tony92243
      tony92243 EileenH

      Posted

      Hi Eileen , yes it is a high dose, think Dr was worried it might be GCA when trying to DX me , believe he was concerned re the possible damage to the eyes this can cause and hedged his bets, think the way I presented might have had something to do with it also? Still will soon reduce the dose to a level that is more conducive.
  • pauline36422
    pauline36422 anna41347

    Posted

    i will  leave it to the more experianced   ladies on this  forum.  as i do think putting

    ideas   when i dont  know   anything  positive.    only starts  worry    so good luck

     and hope you get sorted

    • anna41347
      anna41347 pauline36422

      Posted

      Hi Pauline,  Thank you!  all of these words of encouragement have made me feel so much more positive today. I have an appointment in October with a specialist and now feel better equipt with what to ask for etc. Best wishes to you 
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