Hi to everyone my first post ever about this thing called Lupus!
Was diagnosed in December 16, symptoms started within days of giving birth to my daughter, I'm at the milder end, on hydro, 400mg, steroids 4.5mg,currently being reduced monthly, thank heavens I'm like a block of flats with balconies.! I cannot get through the day with out regular paracetamol every 4 hours, painful swelling joints in fact the more I walk the more I swell, puffer fish is what I feel like, I get regular dead legs, feels like o been kicked hard in the back of my shins.? the bottom half can't do what the top half wants to.? stomach aches daily, and headaches for the past 3 weeks every day, sore eyes dry and feel like I have a fly in them!? I push myself every day to keep up work hard have a family and a toddler, by the weekend I'm done, I suffer most weekends unless I got something planned then I push on then suffer the next day, I wake up daily and feel like I been hit by a bus. My memory oh my, that's why I'm writing this post as I forget to say all of this at my Hospital appointment my consultant is very nice but I do feel like a hypochondriac so I only say so much.! I do forget to take my medication some days then panic even though I have a pill box and set reminders, chest pains and the feeling of a hand pushing down on my chest,very scary, ok so my question is, is this what I got to endure for years to come.? Is this normal for Lupus.? Thankyou for reading sorry for the waffle.x
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Sal4_
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Well, that sounds like there's plenty to keep you occupied! I was diagnosed with UCTD a few months after you had your diagnosis and have been on this site for about a year. From what I have read in that time, there seems to be no such thing as "typical" or "normal" lupus - it can, and sometimes does, affect every part of your body - or else be hardly noticeable. And just because you are suffering one day doesn't necessarily mean that you are doomed to suffer like that forever - as you know, lots of people get "flares" and periods of remission. These are such complicated conditions - and I am still trying to work out what is normal for me and when I should get worried.
I guess my advice would be to keep in touch here and if something in particular is troubling you, post about it and see how other people have experienced that particular issue.
Thankyou for your reply very appreciated, I'm still getting used to all the symptoms I guess, and when I think I getting a control on it, some thing else starts and it throws me. I have a hospital appointment in 2 weeks and will mention this.
Hello, and so sorry to hear that you are suffering. Being very unwell and having a toddler is hard. Is there anyone who could step in and help, or maybe take them to a nursery?
I don't know how long you've been on the medication but it sounds like it's not working to suppress your symptoms. I recognise the state you are in because I've been there, but I'm finding the meds sufficient to suppress 80% of my symptoms (I'm on the same doses as you but only for 3 months so far - find it hard to reduce the pred tho'). Maybe talk to your docs about that? You can't really think about doing other self-care stuff until you've got that under control a bit better.
Thankyou for replying I'm working and busy with family life also, but some days it's a struggle I think you hit on what I been trying to say is this normal to feel like this, on medication or is it just not working, I been on the mess for 9 months now. I'm back at the hospital in 2 weeks I just have to remember to mention this.😉 Take care.x
Yes it is hard to know what's normal isn't it? And medication can't do everything either. I find myself feeling poorly when I contravene my triggers (mainly stress, in my case). I've had to reorganise a fair bit of my life so far, such as not taking on so much, putting my 7 year old in holiday club a couple of times a week, eating better, talking walks and time out. Plus I'm on a ridiculous diet - but it does calm down my digestion...Life is pretty boring atm lol!
Welcome to the LUPUS UK community forum. I hope that you'll find this a great place for support and information and that you'll keep us updated with how you are getting on.
It is very difficult to say what is 'normal' for lupus because it presents differently in everyone. It is fairly common for it to be more active in the months following a diagnosis though as the treatment can take time to become fully effective. It can also take a while to find a treatment regimen that suits you. If you feel that your lupus is not sufficiently controlled at the moment, it is worth discussing this with your consultant to see whether they feel a change or addition in your treatment may be helpful.
We have a series of blog articles that you may find helpful with some of the symptoms you have mentioned. If you'd like to take a look, you can access them at lupusuk.org.uk/category/blog/
If you would like more information about lupus and LUPUS UK, you can request or download one of our free packs at lupusuk.org.uk/request-info...
Sorry to read of your symptoms problems. It's a crucial time after the birth of a child when lupus can really flare!. Your steroid dose is very low and I'm just wondering if your due a Rheumy visit soon when you could discuss it!. If not might be worth bringing it forward by seeing if you get a cancellation!.
Chest pain should be checked by a doctor and if it worsens then it should be A&E.
You've had some good replies so I hope you feel better soon. Keep us posted. X
Thankyou for your reply I really appreciate it, I'm currently being reduced on my steroid monthly, I don't like them at all I put so much weight on and that's just adding to everything I think, I got a Rheumy appointment in 2 weeks, x
Good luck sal for your Rheumy appt . Your treatment does need looking at. I know it's hard with steroids and weight gain but I take them daily and have cut down on carbs and portion size to keep my weight manageable specially as I can't exercise normally. Let us know how you get on. X
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Am I being dramatic?
Am I Petty?
Seriously I am half an inch from giving up. If you're reading this PLEASE reply. I am at a loss.
How long to diagnose
