Today diagnosed I see myself dying in a year - LUPUS UK

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Today diagnosed I see myself dying in a year

Saranda
Saranda

I ama Saranda and I have been recently diagnosed with Lupus erythematosus systemic. I am freaking out as I am giving my self one more year to life. My symptoms are the buterrfly on my face, joint pain and fatigue. My doctor told me these are mild sympoms but I cant help thinking that in a few month my whole body will be attacked. Please advise

24 Replies
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Hi Saranda, so sorry about your Lupus diagnosis. I don’t have diagnosed Lupus but I know all too well the fear and stress that comes from such a diagnosis (other conditions in my case). The forum tends to be quiet at this time but having seen your post I just wanted to say hello and that you are absolutely not on your own with this. I know you will get great support and advice from people here Saranda. Thinking of you very much. I’m off to try to get some sleep now and hope you can get some rest too. Kindest wishes, Tillyxxx

Saranda
Saranda in reply to Tillytop

Thank you

Saranda, I’m not sure this will help, but fortunately the medication and knowledge of these diseases are far advanced . Hopefully you will be medicated and find relief of some of your symptoms.

Read as much as you can on the disease.

I would say anxiety is pretty much a part of these illnesses, which does not help when faced with the unknown.

X

Hi saranda

I’ve now been diagnosed with sle lupus for 4 years.

I was thrown into lupus at the deep end with a lot of lupus complications. I also remember feeling very much like you do now but please try to relax. I know it’s easier said than done. It took a good 3 years to get my lupus under control as it attacks a lot of my organs but am still here and my appointments are now getting further apart.

Please try rest as much as possible as this will help your recovery and hopefully get over this flare.

Hope this helps

Sarah x

Saranda, Try not to worry like this. I, too, had a diagnosis of SLE on the mild end many years ago. We are lucky to have been diagnosed early and at the mild end and as a result will most probably not die from SLE. Most people now don't die from the disease as the medication really helps the body. We all live with it. Yes, we can have flares from time to time and the symptoms we have get stronger but they calm again. There are some good books out there explaining the condition which will give you some peace of mind. GPs can refer you for some counselling which would definitely help too. XX

Hi Sandra, I have been diagnosed with sle for 7 years and I know a lot of people in here have had it a lot longer than that. You just need time to get your head around it, read up on it which can be a bit scary to find out everything that can go wrong but it’s better to be informed then you know what to look out for if or when you have a flare. After a bit of time if your symptoms stay mild you may just look at it as an inconvenience rather than a life sentence, stay healthy and live your life x

Hi Saranda. I appreciate that being given a diagnosis of a chronic condition has a huge impact on your life. However, I was diagnosed 12 years ago after almost a year of regular visits to my GP with differing symptoms. I was put on prednisolone, then weaned off that and put on azathioprine. After a couple of years I was taken off that and put on hydroxychloroquine. I’m now back on azathioprine as, having been on hydroxychloroquine for 9 years, I experienced some minor sight loss. This is the only disadvantage of the drug and only occurred because I’d been taking it such a long time. This is extremely rare and nowadays is carefully monitored so not likely to occur.

However, the important thing is that once each of the medications took effect (and I believe this can take 2-3 months) I can honestly say I’m not aware that I have the condition.

Take your medication, go for your checkups and look on websites like Lupus.co.uk which is a really informative, sensible site

I’m sure you’ll be fine but please let us all know how you get on x

XOXOX Saranda, my SLE diagnosis came as a terrible shock but once I knew what it was I was able to take steps to reduce the fatigue and come out of a mild flare that had lasted years. Eat well, sleep all you need to, don't over-exert yourself, and ABOVE ALL, try to de-stress because stress will exacerbate a flare. Pretty hard to do, I know, faced with a horrible illness, but focus on a plan for life and do it! Keep us posted! mo xxx

Paul_Howard
Paul_HowardAdministrator

Hi Saranda,

Welcome to the LUPUS UK Community Forum. I'm really glad that you have found us and hope that this will be a helpful place of information and support for you.

Getting a diagnosis of lupus can be scary, but I hope that we can help to reassure and comfort you. If you have been reading about lupus online then you may have come across information about a wide range of possible symptoms it can cause and case studies of people with severe symptoms involving organ damage. Whilst it is important to be aware of the potential symptoms of lupus, it is essential that you understand lupus varies significantly in its presentation between individuals. No two people with lupus have exactly the same set of symptoms (which is one of the reasons the symptom lists can be so long!). Most people who are diagnosed with lupus will never have any organ involvement and are able to manage their symptoms quite effectively by following their treatment regimen and perhaps making some small adjustments to their lifestyle (such as protecting themselves against UV light, eating a healthy balanced diet and participating in regular gentle physical activity).

I think it may be helpful for you to chat to some people who have been living with lupus for a while, so that you can get a better understanding of what life with the disease can possibly be like. This forum is one place to do this, but you may also be interested in attending a support group meeting. You can find your nearest regional group at 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, please let me know and I will be happy to send you some details in a private message.

If you would like more information 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...

Please keep us updated with how you are getting on. Also, don't hesitate to let me know if you need anything or have any questions.

Hi Saranda

I think you have had plenty of advice . So I am just commenting to give you more support . I was in and out of hospital for nine months with serious organ problems before I was diagnosed with Lupus . I know the diagnosis hit's you hard when you first

hear it, but it gets better the drugs start to work the pain will get less. Then you start to live with it. Best advice. No stress , yoga and Pilates and low sugar diet.Do this and you will sometimes forget you have it

Thinking of you

Dave

Please don’t panic! I was diagnosed exactly the same over 25 years ago and I am still here. Ask as many questions as you need on this forum, there is always somebody with an answer. Take care xx

Hi Sandra,

I understand your fear, especially in the beginning everything is new and everything seems like it hurts or the next day it’s something new. There are great meds for Lupus. I was overwhelmed with Lupus plus I have RA, Sjogrens and Fibromyalgia. I too thought I was going to die.. but here I am a year later. I cried more in the beginning than I did probably in my entire life. Learn about your illness it will empower you. Track your flares and write down how you feel each day. Get plenty of rest. Don’t stress if can, stay away from people with germs and stay out of the sun for long periods. You will be able to live a decent life..but one that you are in control of. You must learn to say no because she can’t do everything and there will be times when you commit yourself and you will have to cancel based on how you feel. Get a good support system at home and friends that you can talk to. Don’t feel ashamed of your disease. It’s not your fault. Keep good communication with all your doctors. You will be fine and I’m sure all of us will be right here with you as you go on your Lupus joiurney

Hi Saranda 😊🌸🌿🦋

I’m so sorry you are terrified about your SLE diagnosis. It is shocking and overwhelming to get a confirmation of such a condition.

Please don’t condemn yourself to living one year with this. I assure you that if you take things hour by hour one day at a time you will cope much better. You may need to see your doctor for anxiety meds if you’re extremely fearful.

I have multiple Aunts and a grandmother that have had this condition for decades and have done just fine. They see their doctor regularly and follow instructions. Their biggest adjustment was accepting the diagnosis. It made everything so much easier to live their lives once they did.

Negative thoughts and reactions always makes the body/mind functions worse and that just adds to your problems and you don’t want or need that.

Find good supportive caring people in your life and coming on here is always a great place to get caring loving supportive advice.

Take care and best wishes.

😊🌸🌿🦋🤗💗😘

I'm an old codger whos had SLE for 41 years now. Had it since the age of 9 - diagnosed at 15, now 50.

Back in the early 80's it was considered a near uncontrollable terminal illness - that was because next to nothing was known about it.

Now with better knowledge, new research and smarter use of medications we can - and whats more - SHOULD expect to live a normal lifespan. I'm just back from seeing a Lupus specialist - these creatures are a new thing for me. She nearly knocked me of my perch by saying I could live to be 100.......and my level of past illness has been serious.

I'm actually trying to come to terms with the probability of a happy and healthy future. 🙃

This is a new concept for me - but for you and you're generation it will become your normal.

Dear

I have had these symptoms more than 20 years ago and Iam enjoying a reasonable life .Got a job and a family with small kids.

Recent investigations my doctor told me my lung kidney heart are all clear from any lupus sign.

Dear don't kill yourself with worries.

Enjoy life

Dear all thank you for all your kind words and suppurt. It means alot.

Saranda,

I felt that way too when I was diagnosed. I am 66 years old. My lupus can be considered severe because I have multiple organs involved. I have had lupus for 53 years. I still work. I have a wonderful life. I hope to live another 20 years or more. Lupus is a life sentence, not a death sentence. You can do this!

Linda

Saranda
Saranda in reply to gazorpf2003

Thank you so much. Everybody here has been a great help. I am feeling better with all the help from this group

Please chill. I started having first symptoms like yours at about age 12. Am now 68 and still kicking. Have had ups and downs, but managed with the help of others at times. Keep talking and use this group. I started this year with HU and love it. You can be your self. Angry, depressed, scared or just hurting and the people here will relate and understand. In my older years I am having more lupus,etc. problems, but none are a death sentence yet. Good luck and God Bless you. I know it can be scarey, but there is lots of hope and help out there.

Hi Saranda... just checking on you. I hope Your Day is not too bad. Stay strong and positive.

Saranda
Saranda in reply to InezJ

Thank you, so much for ypu concirne I amdoing littel better. But I have started having sleeping problems, so I am very tired. As soon as it gets darks that when the anxity starts, my brains start to wonder and nothing helps not even sleeping pills. Sending you a big hug for far away!

I understand. I couldn’t sleep in the beginning either. There are a lot of adjustments and life changes. What you do and eat, stress, weather will all have some type of affect. For my first six months my Rheumatologist has me to keep a journal of what I ate and how I felt. I couldn’t even do exercises without flaring the next day. Now I have a stationary bike that I get on every night before I go to bed and take a shower after and I sleep better.. before I was taking gabapentim thay my doctor gave me. Please be patient things will change and you will see some improvement. Read and educate yourself about your illness. Read, ask your doctor for info and watch videos. I will be praying for you along with the rest of our Lupus and chronic illness family.

Dear Inezj thank you for all your help. I appreciate it alot.

I was diagnosed with SLE, Sjogrens Syndrome, and Breast Cancer in the same month 20 years ago. I felt like this was the end for me. After the initial shocks, I just started reading about nutrition, and what I can do to be the best me possible. I was put on Hydroxychloroquine for SLE and Sjogrens and Tamoxifen for five years after breast surgery. I learned that stress and the sun made me have flares. Within a few months I was stabilized. I have lived comfortably ignoring these diseases since then. I was diagnosed with Autoimmune PBC 3 years ago. I take my meds for that and just live my life. I wish you well on your journey. Most of what we fear does not manifest itself.

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