Where to next?

keldi
keldi Member Posts: 53
edited 10. Sep 2011, 14:08 in Living with Arthritis archive
Although I have been trying to keep up with everyone's news, I have not posted my own up date for several weeks now.

Where do I start?

For weeks now I have been feeling very poorly and getting joint and muscle pain in every part of my body. It all came to a head last bank holiday when even breathing hurt. I was unable to sleep or even find a comfortable position that offered me temporary relief. A day I would rather forget. So it was back to the docs first thing on Tuesday morning. More blood tests etc. As I have had so many blood tests over the months, I did not really expect them to show anything. Boy was I wrong - anaemia, low platelet levels ad and ESR of 177.

Long story short - the doc is now saying that I have polymyalgia and not fibromyalgia as he first though (I still don't understand the difference) It was one of those eureka moments and he was very excited as a course of steroids should have me back on track in 6 - 12 months. HURRAY :grin:

The treatment seemed to work and for a few days I felt really well. Then the inevitable happened, all symptoms returned with avengence. More tests, more scratching of the head and the doc finally admitting that he does not know what is going on. As soon as he thinks that we are on the right track the disease seems to mutate in to something else. Still, I am delighted to have a doc that believes that there are problems that need investigating. My last GP (female) told me that it was the menopause and that I should go to the gym 5 days a week and focus on something else for a change :P This was after she had confirmed that I have OA.

I have been now been refered to a rhumy and have an appointment with the muscular skeletal team at the hospital. Doc also wants to re-test for Lupus although this was negative 6 months ago.

Where will it all end? I am sorry to keep going on because I know that so many of you are suffering a great deal more. I am feeling particularly low today as my daughter has just gone back to uni and during the last 3 months she has been with me she has been my rock. This coupled with tiredness and chronic pain have made this a particularly bad day.

I suppose I could always follow the lady doc's advice and go to the gym and snap myself out of it Hope to see you al there. :wink:

Embrace the good days

Diane

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh keldi, I am so sorry to read this. I do not have anything to offer as I am stranded on the sofa thanks to a notable lack of steroids: diagnosis can be a minefield but at least the docs are trying to sort matters. Rest assured my lttle bell will be ringing at 7pm and I shall be thinking of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • suzygirl
    suzygirl Member Posts: 2,005
    edited 30. Nov -1, 00:00
    Hi, the referral to a rheumy is a good thing. Your gp although lovely is clearly out of his depth. Lupus can take a while to show up in the bloodwork so it is worth retesting.

    It may be that the steroid dose wasn't high enough or you overdid things as you were feeling better. (We have all done it and I still do it now! :lol: ) Pacing is important, but difficult to adjust to. Once you have a diagnosis, the rheumy can refer you to physio to help with exercise etc.

    In the meantime, I would be careful not to over do things, start gentle, little and often.

    Make a note of your symptoms, any triggers, what relieves them etc for the rheumy. Be specific, I can't lift my arms to dry my hair etc. Take photos of any rashes or sellings to help them.

    Take care
  • tiggernut
    tiggernut Member Posts: 339
    edited 30. Nov -1, 00:00
    Hi Diane,

    Sorry to hear you are feeling so poorly.With an ESR of 177 I'm not surprised.
    Sounds to me like you have more than just arthritis and polymyalgia. Hooe they figure it out soon.
    Take care,
    Anita.
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hi Diane :grin:

    WoW you have been going through it. :shock: but hopefully with the referral to rheumy and musculo- skeletal you'll get some answers. :wink:
    .... and effective control of the symptoms. :!:

    Hope you don't have to wait too long for an appointment?

    meantime, take good care of yourself . :wink:

    Iris xxxx
  • frogmorton
    frogmorton Member Posts: 30,026
    edited 30. Nov -1, 00:00
    Hi Diane

    Good to see you.

    thanks for the update, but by the hack that has NOT been fun for you at all :???:

    I am so glad someone is klistening to you and you are getting some help even if it's not working just yet.

    I will cross everything for you for a speedy diagnosis - except when l'm at the gym :lol:

    Love

    Toni xx

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