Chronic Atrophic Arthritis - Newly diagnosis but so relieved

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goonerkatie
goonerkatie Non-active member Posts: 16
edited 29. Apr 2011, 01:58 in Living with Arthritis archive
I just had my 3rd visit to the Rheumotologist. My lymphocytes had spiked again and I have been feeling really awful for the last two months in regards to pain and fatigue and struggling once again to have a moderate quality of life with my partner and work !

I am 43 years old and have been feeling really lousy for just over a year after a really bad bout of the flu

He has put me on an anti-malarial drug to see how I respond to it. I am thinking now about so many things in my life. I am currently dealing with a new pain which is in the middle of my spine which has affected me

I am looking at my demanding managerial role, at my diet, what changes I can make at home and how do I balance exercise with my pain

I was wondering if anyone has an experience of this diagnosis, good/bad or indifferent. I truly dont want to feel like this anymore. My mind is so willing but my body is screaming stop !!!!

Any responses would be gratefully received

Thank you so much

Kate

Comments

  • border
    border Non-active member Posts: 94
    edited 30. Nov -0001, 00:00
    I am sorry, but am unaware such a condition exists. But as you say self-management seems to be the key along with my favoourite but dreaded word 'pacing'. Have you spoken to helplines or any Arthritis Cae literature, that might be able to produce some tips.
    Best wishes and take care.
  • goonerkatie
    goonerkatie Non-active member Posts: 16
    edited 30. Nov -0001, 00:00
    Thanks so much for your reply. I dont think it is dissimilar to RA to be honest going on what I read. It basically means that the virus I caught has decided to go into my joints !!!! and unfortunately quite possibly there to stay

    So basically I needed to find everything in my armour to control it rather than it control me .................... I hope you are well
  • frogmorton
    frogmorton Member Posts: 30,431
    edited 30. Nov -0001, 00:00
    Hi Kate

    Welcome to the forum from me :smile:

    Sorry you have had to find us but glad you have....this forums is a wonderful resource full of lots of lovely people.

    I have inflamatory arthritis too (and some bits of OA thrown in for good measure) l am pressuming you are taking plaquenil or hydroxychloroquinine? I take that too and have for a few years now, l think it helps a bit to be honest l was in a bit of a state before it.

    I also take arcoxia (anti-inflamatory - have you got one to take - maybe diclofenic?) and amitriptyline to relax muscles and help sleep at night. I also have a butrans pain patch as things like co-codamols and tramadol make me queasy. Mind you if l am in real trouble l take them as well.

    I find this mix with the addition of colchicine and sensible behaviour on my part (resting and pacing myself) has kept me ticking along pretty well.

    Keep posting wont you l am sure you will find teh forum really helpful

    Love

    Toni xx
  • goonerkatie
    goonerkatie Non-active member Posts: 16
    edited 30. Nov -0001, 00:00
    Hi Toni, It is almost like reading a reflection of my account. I have been in such a dreadful place for probably 6 months. My GPs were amazing and never were inpatient with me. Strangely I had seen the Rheumo twice before over the last 6 months and I thought he was not being helpful at all but obviously he wanted a story to come together before saying anything in regards to diagnosis

    I am on the hydro medication, two days young :-) The amatryp does help my sleep. You are so right about the Tramadol. I was having really bad bouts of vomiting, but at the time I thought it was to add to the list of symptons I was living with !!!!

    I have also acquired a couple of lumps which made me really nervous and waiting for an ultrasound but the Rheumo said probably fatty lumps and nothing to do with the condition

    This past 12 months have been an awful rollercoaster for my partner, myself and my family

    I think one of my biggest challenges is rethinking my career. Given the recession it is not a time to think about changes jobs but I do wonder if I can sustain it. What has been happening is I keep going and going and hit this massive brick wall and can be off work for approximately 6 weeks.

    I manage a mental health scheme so its not the easiest of jobs. I am of sick at the moment !!!

    My parter has three older teenage kids, one with autism so that is not without its challenges. My partner is amazing and she is really strong when I am not feeling so brilliant but she also gets the brunt of my exhaustion and pain !!!

    I am now in a position where I really do have to look at everything in my life. Better eating, exercise that I dont collapse afterwards, employment and just generally how much I can spread myself with my commitments

    I hope you dont mind me asking but what is colchicine ?

    Has the medication had an impact on you?

    I find that sometimes the fatigue is my biggest demon :-(

    Thanks once again for your response

    Katie

    xx
  • tillytop
    tillytop Non-active member Posts: 3,460
    edited 30. Nov -0001, 00:00
    Hello Katie and welcome to the forum from me too!

    Sounds as if you have really been having a rough time, but, as you say in the title of your post, it must be a relief to know now what it is you are dealing with.

    If I have understood correctly, you have only just started taking the Hydroxy but I really do hope that it helps you and perhaps gets things under better control and then you will have a better idea of what you can and can't do and of what lifestyle changes might be needed. Looking after yourself as well as you can is a really positive step Katie and might help you to feel more in control of things.

    I know from my own experience of RA that fatigue can be a real challenge, but if the Hydroxy helps you, you may find that this improves. Meantime pacing yourself really is the only thing to do and make sure you get plenty of physical rest, even if you are not sleeping well.

    You will get loads of support from the peeps on the forum Katie, so please do keep posting. We are here to listen and support you as best we can.

    Thinking of you.

    Love Tillyxxx
  • goonerkatie
    goonerkatie Non-active member Posts: 16
    edited 30. Nov -0001, 00:00
    Toni

    Thanks so much for your reply. I have to say it has been an empowering experience going straight to this website after my diagnosis after spending so long in the dark without a diagnosis and knowledge , wondering what was going on with me, having to have time of work and not being able to give a clear reason why !!

    Its a strange few days, first the relief of someone putting a name to all my symptons, but now oh gosh what does this mean for me and my partner for the rest of our lives ?? How bad will it get etc ......it certainly is a bumpy ride

    A new pain is in the middle of my spine and I am thinking oh no !!! I have never had a problem with my back. My neck has also started playing up !!!

    This forum is incredible. I dont get a sense that its not a forum for dark comments, although I do know that everyone is living with pain, fatigue and all that means !!

    Once again, thank you

    Katie
  • constable
    constable Non-active member Posts: 2,115
    edited 30. Nov -0001, 00:00
    Hi Katie, your really going through it at the moment aren't you. I am so sorry for that, lets hope that really soon they find the right meds for you that you can get into a better place in your life. I don't have the samew as you, I have OA, but I know the pain alone can be very intense and it does take you over. Keep us informed on your progress wont you.

    Karen xx
    Karen xx

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