Another newbie

Hi,

My name is Julie. I live in Pembrokeshire, West Wales. I was diagnosed with Rhupus (RA/Lupus overlap) back in December. I've been on hydroxychloroquine and methotrexate since.

Like most of you on this site I have been through many ups and downs since diagnosis. Little change in my symptoms, identity crises, denial, anger.....and then after about 5 months I had a really good spell. Felt almost 'normal'.

But week before last I had a flare.

On top of back to feeling pretty rubbish I also felt bitterly disappointed. I thought things were settling down, I thought the meds were kicking in and everything I'm trying to do to help myself were all working. But it all came back. Just to remind me it's in control, not me!

Feeling a little better today but my hands and feet feel like balloons. Hot, swollen and don't want to work. My boys will have to make their own breakfast again!

But I'm trying to stay positive.

I've accepted that life as I knew it is over. I used to be a keen runner, cyclist and general fitness freak. Always on the go. I still manage to walk the dog, when I have the energy and I do yoga when I know I'll have the energy to get back off the ground once I'm down there! So life isn't all bad. I'm still working, part time, and I have a very understanding boss. My family, especially my husband, have also been very understanding.

I count my blessings everyday even with this horrible, debilitating, unpredictable condition. But I get scared. Not knowing what's likely to be around the corner is scary.

This site is excellent though. So much support out there, answers from people who are going through it all themselves and people who won't judge when the bad days come.

13 Replies

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  • Hi jdavies

    Welcome to the forum, hope you find it helpful. It's tough suddenly having a flare when the medication was helping. Tough you have the RA/lupus overlap!. I just wonder if your doctors would agree to a short course of steroids to bring it under control?. Are you due a Rheumy visit?. Can be helpful to try to bring it forward. Seeking a cancellation can help.

    You sound very positive despite how your life has changed greatly with this diagnosis , specially as you were so active, it's tough!.

    Have a look out for Wendy's posts. She is in Wales too, not sure which part but she wants to set up a local group . You might hit it off.

    Keep posting and I hope your better soon. X

  • Thanks Misty, just seen this post and so excited! x

  • So pleased Wendy. You'll have a group in no time. X

  • Fingers crossed. X

  • Croeso, jdavies. Hope you will keep in touch and continue to share your thoughts and experiences. x

  • Hi Julie Adding my welcome to the forum and as a neighbour here in the West, nice to know your out there, I only know of one other member in our area so nice to hear from another around here.

    Been under the weather too of late have subacute cutaneous lupus with secondary autoimmune issues, lots to take in and balance with family and work and frustration such as flares and getting the care we need to juggle it all ....hope your feeling better soon and you can figure out if anything set off your recent ' unwellness ' is flare, lots of advice here and support... ML

  • Hello Julie. It is so wonderful to read your post and find someone else living in Pembrokeshire! I have been trying to reach out to others in my county for some time. I even posted here, asking if there was anyone else form Pembs and sadly got no response. There must be more of us out there! I have SLE but was initially diagnosed in 2013 but with SCLE. I went to the London Bridge Lupus Clinic in London in April and got my new amended diagnosis and now have a new treatment plan. I can identify with a lot of what you have said. I was 39 years old when diagnosed and it was a lot to cope with. It still is, 3.5 years later but you do find your own way of getting through it. I am now on hydroxy, MMF and mepacrine. I am married and with 3 children, aged 13, 12 and 9. I no longer work, as it all got too much for me. I have been posting since I joined here in November 2013, so take a look at my posts. I am currently liaising with Lupus UK to set up a Pembrokeshire Lupus Support Group. Would you be interested in attending our first meeting in September? It has felt very lonely here in Pembs at times, but this site and the support of Lupus UK has kept me sane, well relatively. Ha ha. It would be lovely to hear more from you. Lupus is a very individual journey but I do believe that by working together we can help eachother. Best wishes. Wendy

  • Hi Julie,

    Welcome to the LUPUS UK HealthUnlocked Community!

    We offer a free information pack that contains factsheets, guides and a list of helplines which you can download or request here: lupusuk.org.uk/request-info...

    Have you spoken to your GP or rheumatologist about the symptoms you are experiencing? We published a blog article on pain management which contains helpful tips and information which you can read here: lupusuk.org.uk/pain-managem...

    If you are currently feeling overwhelmed and stressed then it may be best to speak with your doctor and see if they will write you a note for a few days leave. Stress can be an important trigger for lupus, so it is important not to push yourself too hard.

    Also, if you would like someone to speak to, we have local LUPUS UK contacts that cannot give medical advice but are there as a listening ear to offer support and advice over the telephone. These contacts mostly have lupus themselves and are volunteers. If you would like more information on having a local contact to speak to, as well as information on support group meetings you can email me at chanpreet@lupusuk.org.uk

    Please keep us updated, all the best.

  • Hello Chanpreet, just reading your reply and curious about the local contact in our area. I have never heard of this service in our area before. Is there someone based in Pembs? Best wishes.

  • Hi Wendy39,

    We have a contact in Pontypridd, South Wales. His name is Gordon Davies.

    Please note: Volunteer Contacts are available to offer support but as virtually all our Contacts themselves have lupus, it would valued if callers did not ring after 9pm.

    All the best!

  • Thank you for replying. I was very curious. X

  • Hi Chanpreet,

    Thanks for the above info.

    I've ordered the information pack and will check out the pain management info too.

    I haven't been to my GP since I've been diagnosed as I've been trying to 'manage' things by myself but maybe it's time to ask for some help.

    I'll see how the next few days go.

    I'm back with my rheumatologist next Friday so fingers crossed my medication will be reviewed.

    It all seems like a very slow process.......

  • Hi Julie,

    You are most welcome.

    Good luck with your upcoming appointment, please keep us updated.

    All the best!

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