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Hi, my name is Claire and I am 36 years old. I was diagnosed with lupus about five weeks ago. I feel scared about the future at the moment because I can not believe how quickly this has dibilitated me. For example, I used to walk the dog on the beach with my family and we could be walking for 1 to 2 hours. Now I am lucky if I can manage 20 mins before my knee joints are that painful I have to stop. The tiredness is unbelievable. Just doing normal household chores exhausts me and this frustrates me. Recently I have also been having episodes of skin itching. It feels like pins and needles but is very intense and painful, mainly in my legs and arms. An episode can last 1 to 2 hours and leaves me exhausted. I am on 400mg of Plaquenil and have been told by my rheumatologist that they can take 8 to 12 weeks to take full effect. Fingers crossed things will improve then. I have been reading several posts on this site and already have found it helpful. It helps to know you are not alone.
 

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HIya Claire... yep it is quite a shock and takes some getting used to; hopefully the meds will help settle it all down.. plaquinel can take up to a year so the 8-12 weeks is optimistic... my rheumy said 2-3 months, another said up to a year... so bear with it.. it slowly creeps up on you that things seem more settled. It is an individual journey but popping in here helps to sort out some issues with good sound advice and bucketfuls of humour... so glad to welcome you. Take care to listen to your body and rest when you need to, hopefully you will be walking like that again when your knees have calmed. It is overwhelming after diagnosis.. a rollercoaster of emotions, it is understandable you feel concerned for your future, but you are now on the road to proper treatment and learning how to manage your lupus, rather than it manage you!! You will get there, but take your time and don't try and carry on being superwoman... the house may have to be a little more lax!! I feel better than last year before my diagnosis..I still feel new to it all though, so much to find out. Anyway enough waffle.... do start a daily diary of symptoms and pain grading it 0-10... photos of skin rashes, swellings etc, really helps at the rheumy appointment. Take care,
Claire XX
 

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Discussion Starter · #3 ·
Thanks for your reply Claire. This forum has been a help to me already. I have been sat on the sofa saying "oh my god thats how I feel" and "no way someone has described that symptom exactly how I do". I am learning to just sit down or lie down when I have too. Well as you know you don't really have much choice in the matter. Bit disappointing to hear it could be a year for the meds to kick in but like you said everybody has a different journey. No doubt I will have many more questions.
Thanks, Claire X
 

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Hi Claire

Hi Claire

Welcome to this site i myself only joined last month.Its a great site very helpful even with the silliest query!I hope you find it helps you as much as it has me and i was diagnosed 3 years ago and still have lots of questions!!!

Teresajane x
 

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Hi Clair and welcome to the site. It is an excellent place to find great info and support. The members are really friendly. It can be a shock to get your diagnosis and takes time to accept it. It can be frustrating accepting the changes it means in your life as well. Learning to pace yourself is so hard but can make such a difference. I hope the meds work quickly for you. In the meantime feel free to ask any questions.

Take care

Deb
 
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