lupus

[sammysam2880]

Good morning everyone,

this is all new to me i just found out i have lupus i have all sorts of feelings i was expecting to find out what type of arthritis i have and then found out i dont have arthritis at all that its lupus yes thats how i was told. i feel scared sad hurt confused. ive been living with pain for years now and it sucks the only good thing that has come from this is that now we know why im always feeling weak,sick and in alot of pain. i done this i cant stop crying thinking of what did i do wrong. i haven't spoken to my only sister in a year do not know why we stopped talking but we finally spoke on Saturday i told her i sucked that i had to find out i have lupus for the family to come together.

[Bronagh2015]

Hi Sammysam2880, everyone here can understand your feelings of fear and anxiety at this time. While it's a terrible shock to hear you have a serious chronic condition at least now you can make some sense of all the pain and frustration you've been suffering and get started on proper medication to help you. If you get in touch with Lupus UK they will gladly send you an information pack which will greatly help you and family and friends understand everything better. Being a member of this community will also benefit you greatly as you can share your worries and seek advice and support.

[Jhpc]

Hi sammysam2880,

I am new to this site in November, when I too was diagnosed as having lupus and Rheumatoid Arthritis.

Very scary at first but it begins to make sense why you have been feeling like you have. Once you start treatment hopefully you will begin to feel better. It took me the full 3 months since I started my new medication to start to feel better.

You will find this site very helpful.

Glad you have reached out to your sister.

[Paul_Howard Partner LUPUS UK]

Hi sammysam2880 ,

I'm really glad that you've found our community forum and shared with us. Your feelings following your diagnosis are very natural, especially as it was unexpected. Have you been started on any treatment with the aim to help relieve your symptoms?

Please continue to share in this forum and let us know how you are doing. We've got a really supportive and knowledgeable group of people here who will help you as much as they can.

If you would like to meet other people with lupus in person at a support group, you can find your nearest one on our website here - lupusuk.org.uk/regional-gro...

We also have a network of trained volunteer telephone contacts who have lupus if you would like to chat to someone else in this way? If you would, please let me know and I can provide you with more information.

If you would like more info about lupus and LUPUS UK, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[Hidden]

Hi, The mixed emotions you are feeling at the moment are only to be expected. It is a bit of a rollercoaster but it will settle. At least you now know what is making you feel unwell and you and your consultant can plan your treatment. It will take a while but then you will begin to improve.

In the meantime. start to pace yourself. Do things in small bites, physical, mental, rest. By this I mean quarter of an hour chunks. Changing activity helps to relieve fatigue. Make sure you keep a diary of symptoms and what you were doing. It helps you consultant.

Getting family involved from the beginning is good. Even though you haven't spoken in a while I am sure they will want to know and understand the condition themselves. All the best.

[chrisj]

I understand your feelings sammy, it took illness in the family to bring me and my sister back together again. My mother was ill and we needed to work together

I was being treated for undiagnosed rheumatoid arthritis for some time with diclofenac. I was in a lot of pain from sciatica as well and the gps insisted the tablet would help with that as well. It didnt and I ended up with an ulcer

Long story short...I had to go back and see a gp after surgery to get another medical certificate to protect my benefits, it was a young locum I saw. He asked if a proper diagnosis had been done, it hadn't and within 2 weeks I was at the hospital having blood tests. When I went back for results the doctor said "its not rheumatoid arthritis, its Lupus...I'd never heard of it. Was reassured it was mild and prescribed the right drug, plaquenil, which suits me. I'd been unwell for a long time so it was a relief to finally know what the problem was

Its scary and took some time to accept so be kind to yourself, things will fall into place. Do you know how they're going to treat it?? Wishing you well xxx