I don't want to be this me no more

[Lilrose]

Help!! I've been down since November end of oct and now I'm always dizzy nausea and vomiting. I have weak arms every morning with flares in my wrist. How do you make yourself feel better ? And these lesions on my neck how do you make them go away? Yes I have lupus and all the other stuff that you get but I'm tired of being like this when does it get better ?

[Pipido36]

Hi Lilrose, I can understand what you are going through. The truth is it won't go away but it's something you have to learn to manage. I have lupus as well and other diseases that come with it. I always have lesions which have made me shy away from the public. Talk to someone about how you feel and also talk to your GP. It is really hard at times but I think finding something that you can do to divert your thought from pain and depression also helps. You are not alone and I know with support from this platform you will understand what you are going through. I always pace myself and listen to my body. Lupus can make you weak and depressed, I believe you are on medication? At times it's better to try different medication to help with your mood and other symptoms of lupus and this you can discuss with your doctor. I hope you feel better soon. ! Take care x

[lupus-support1 Administrator in reply to Pipido36]

A very caring reply.

[lupus-support1 Administrator]

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

SLE is an autoimmune disease, one that include periods of flares and remissions. Are you saying that you have had a flare since the end of October-November? I presume you have seen your doctor recently? If not, you do need to see whether your medication requires adjustment.

One of the hardest aspects of lupus, is trying to cope with an unpredictable and painful disease? There is no easy easy answer. A good lupus specialist, is essential. A supportive GP and understanding family and friends.

You also need to listen to your body and rest when possible. It is "normal" to feel anxious and/or depressed, but sometimes it might be a good idea to speak to a counsellor or psychotherapist.

I can understand you want someone to tell you that you will feel better in some many days or weeks,but this isn't possible. Nevertheless, it is not all doom and gloom. Today, treatment and diagnosis is far better than 50 years ago. If you are feeling very unwell, I would encourage you to return to your doctor.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[Atibrat Moderator LUPUS SUPPORT]

Lilrose, I was diagnosed with UCTD in 2009 and told I have lupus and other connective tissue disease. I remember the first couple years were the hardest for me. It will never go away but you should have some periods that are better than others. It took at least 2 years before I felt better. I think a combination of the medication and working with my doctor... and learning how my body and disease reacted to things like being over tired, stressed and many other things.

Almost 8 years of this and most of the time I feel like I am in pretty good control. I know the early signs of the disease letting me know it is rearing it's head and I have learned to work with that. It is not easy and you are not alone. The first couple of years I spent much of my time on this website. Now working with the disease seems like something I do automatically.

Work with your doctors closely and in the beginning this website was a life line for me. Ros was wonderful and gives great advice. I learned a lot on here and you will learn how to cope with your disease. I have not been on here for quite some time and I remember being scared, overwhelmed, depressed and it is normal and there is help. Now I feel like it is just another part of my life like growing older. I do not like it any better but in time I came to accept it and work with it the best I can. I would bet you have better days to come.

Hugs Tammy