Where is everyone??

It has been very quiet recently on the forum. I know we all had our issues with the logging in etc but still, there hasn't been much activity here. I would love to think that everyone has their lupus hiding in the shade on its way to remission but I think that would be a tad too optimistic.

Let's not forget, please, how important this site has been to all of us throughout the lupus journey and we need to continue to support it despite technical glitches, or maybe dislike of the layout or of the changes.

We need to remain connected and to remain a community and hopefully with the help of the site's support team all issues will soon be resolved so we can access and contribute as often as before.

Looking forward to hearing from you!

24 Replies

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  • Well said -I am a newbie but I find this site so useful. Hopefully everyone will be back posting soon.

    Take care.

  • I understand that this is an issue currently being observed in all the communities since HealthUnlocked upgraded to the new platform. It is unfortunate that there were so many technical issues for people at first. This may have put some people off. Most of these issues have now been resolved. The email notifications will be starting again at the start of this week, which will hopefully invite some more people back.

  • Hi Paul,

    Unfortunately I haven't been receiving my weekly e.mails from Lupus uk and other sites on Health Unlocked.

    Maureen

  • Hi Maureen,

    HealthUnlocked had to turn off email notifications when they upgraded to the new platform. This was a temporary measure until they had things running more smoothly. They will be starting the emails again at the start of this week.

  • I'm here! Mostly...........

  • Ah I too was thinking it was so quiet. It's such a great site for sharing information and for not feeling so alone with this.

  • Just managed to get back on after the recent changes, I have missed having the site as it really helps me to understand better whats happening to me.

    I hope nothing goes wrong with it this time,its great having people there who know.

  • Hi Purpletop. Hot weather seems to have kicked in a bad bout of fatigue for me. Was too tired to login past few days! Resting up so I can manage my part time work. Agree good to remain in touch as a community and will try to post soon. Meanwhile I appreciate reading posts and getting a sense of how the community works.

  • Same with me with this fatigue but I thought it is the medication. I can barely keep my eyes open!

  • Hi sorry you are fatigued as well. What meds would make you tired? I usually manage really well with rest and pacing and have come off steroids and was coping well. But past week has been hard for me. Joint pain worse too and muscle aches. I have never really reacted to the sun as long as I am sensible but its been too much for me all this heat and night times bad. Still on a positive note my lovely husband is cooking and shopping and generally being a great human being whilst I lie on the bed in an irritable and restless fashion. Fatigue always seems to go along with great physical discomfort and inability to find a restful position to lie in!!!

  • I've recently upped the dose of mycophenolate so I thought that would be the cause of this crushing tiredness. I've never been this affected by heat but I will give it the benefit of the doubt now others experience this too. I hope your joints get better soon, my fingers are killing me at the moment!

  • Thank you. I hope your joints ease off soon. I just assumed heat and humidity the problem as on minimal meds just now - mepacrine and pain meds. So hard to unpick causes with lupus. Is the mycophenelate helping? Had to come off steroids as too many side effects and rheumy not keen on anything else if I can cope. (I can but its not as easy as being on steroids by a long shot). Allergic to hydroxycloroquine (eye problems and rash!). Of course worse case scenario is a flare as i am very fatigued and pain meds keep wearing off or sometimes having no effect. Off on a retreat Friday and hoping 9 days meditation and rest will help. Keep smiling, your positivity is great.

  • i noticed this morning still not suporting internet exsplorer so there will be a lot of folks that cant log on plus side can get on with android now all the best g

  • I was informed that they had fixed the issues with Internet Explorer so I will flag this up to the HealthUnlocked team to see if they can fix it. Can you describe a bit more about the problem you experienced?

  • They are all on their hols! lol I have to go around the houses to get on here...just a blip I am sure. Plenty of flashing and banging around midnight and it's still rumbling and grumbling overhead this morning. Cats asleep on her pillow drenched, don't know where the other one is. Have a good day or as good a day as possible . x

  • I have been suffering from fatigue too! I just seem to be sleeping all the time and I have a terrible headache. On the positive side, I'm waiting for my new, polka dot, shopping trolley (with a seat, I'll have you know) to be delivered so that I can shop a little easier. Can't wait. Well that's the plan anyway. Love to all xxxxxxxxxxx

  • My shopping trolley has arrived. How sad has my life become that a shopping trolley fills me with joy.

    Its fab though :)

  • Pink polka dots?

  • pink and purple if you please :) Really cheap too, I got it off Lloyds pharmacy disability online and it was only £8.99. Was really pleased with it and had a lovely day with not to much pain and just went out the garden and fell!! I can't believe it. In agony now with my back and I cut my knee and arm. Never mind, I'll just lie on the sofa and look at my trolley, that'll cheer me up :)

  • whaahooo! :) ive found you all again,my lupus buddies! I had somehow managed to log onto a similar site but couldn't find you all! im a happy bunny again.......especially as the sun has hidden behind the clouds and the rain has fallen as ive been suffering badly in this extreme heat :( x

  • Hi...I havent had any e mails from the site for quite some time and I must confess out of sight is out of mind with me..but this one came today and here I am :)

  • You should start receiving email notifications very soon, if you aren't already. Sorry for the inconvenience of not receiving them since the new platform.

  • Hi All. It is amazing how many of us have been thrown by the changes that have been going on but it is wonderful to see us all gradually returning. This site is definitely a wonderful support to us and I for one certainly missed it when it appeared to disappear. I understand that the emailing system will be returned to us shortly which is great news. Hope you aren't to badly hit by this hot weather which has certainly sapped what little energy we have. Have a good day. Gabs.

  • Wow at last im back, missed you all. The changes are great but for some reason my page wouldnt load for ages, been trying evey day and wow its back.

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