Scared mother SLE?

[Leah2014]

Hi all, I've just joined and been reading some of your posts and your all pretty fab how your dealing with things, me? Not so much!. I got poorly in May, it's taken me until now to get my GP to investigate Lupus, I had a negative ANA and thought that was it, until today when my endo has referred me to a rheumatologist and I have to have a DNA strand test. I'm scared senseless! I'm a mother and I'm so worried what the future holds for myself and my children if I'm diagnosed with SLE which my endo thinks highly likely. Obviously I have so many things going through my mind, is it fatal (I did ask and got the standard speech of depends how it progresses etc) so I'm feeling ever so hopeless at the moment! , so I guess my question is to you all how did you all cope? In the beginning? With the not knowing? (if you have read to here thank you! I'm sorry if it seems like a pity party I don't know where else to turn at the moment) x

[Jueloz]

Hi - to get poorly in May and be investigated just now is supreme time wise. It took me 7 years to get a diagnosis with a lot of ups and downs all the way! He has referred you to a rheumatologist as they are one of the consultants that deal with Lupus - My rheumatologist has been my rock as far as symptoms in that area. If you are diagnosed with SLE then it is not the end - it is a struggle, I'm not going to lie but if you take the medication you are prescribed and look after yourself then you will be fine.

Again if it is Lupus you will have good days and bad days - mostly Lupus is not fatal nowadays, it is well controlled with modern drugs and taking care of yourself etc. The not knowing is all part and parcel of Lupus - it is a strange illness and brings many challenges but when you have been stabilised on the correct medication then life can run almost normally assuming the medication is right for you.

I have many problems with Lupus but you learn to live with it and learn to adjust to it.

Hope this helps

Julie

[Leah2014 in reply to Jueloz]

Thank you so much for your reply, its nice to hear from a "real person" so to speak without getting the standard speech! 7 years?! My goodness you really have been through a lot!. May I ask if you get muscle twitching , pinsand needles feeling with your lupus? My endo said everyone is different I know. Hope your feeling the best you can right now , Leah x

[Jueloz in reply to Leah2014]

yes I do get muscle twitching but not pins and needles - everyone with lupus gets their own range of symptoms which is why the diagnosis is difficult. I do get a lot of joint pain, nausea, headaches, etc etc but this is controlled by steroids and methetrexate which is for arthritis. When all of this started my children were young, and they have grown up with me being tired etc. I still work 2 jobs, I love life and when I am having a bad day I go to bed and sleep. Actually now you come to mention it my feet are tingling like mad - you get used to all of this and it becomes the norm. Don't worry too much - doctors who know about Lupus are scarce but if yours is suspecting it already then the correct medication/care will be put in place and your symptoms will be levelled.Ask me anything re your symptoms - I will let you know if I have them!

take care and try not to worry!

Julie x

[Leah2014]

Your so kind!, and have made such a difference to my day so thank you! X I started with chest pain/discomfort, which lead to panic attacks , bone pain I feel like I had bad flu, my joints make a cracking noise but no swelling the most pain is in my forearms and wrists. My BP went high, b12 dropped and vit d deficient my eyelid swollen and a red rash looks like sunburn across my face. Headaches, and pressure behind my nose. Muscle twitching and pins and needles in arms and legs and stomach pain. Feel like a full on hypochondriac to be honest! Kept going to the doctors (never been before this!) with all these vague symptoms and kept getting told anxiety so I started to think after being told that so many times maybe they are right! Until my endo saw me today and thinks SLE and sjrodens (misspelt sorry!) going through tests see you in 8 weeks. I done the worst thing as he told me no info apart from depends how it progresses, looked on Google and become really distressed at the prognosis with SLE , because of my babies mainly. You have been there with young children so I'm sure you understand what I mean . Does any of the rest sound similar to your situation? Leah x

[Jueloz]

I was initially told I was depressed - which to be fair I was coz of all the symptoms! Stomach pain is a part of lupus due to how it can affect your system. I was actually told in the early days to get a grip and relax lol x sjorgens can be part of the package. Dry eyes mouth etc - to google some of this would make you think you have only days to live! Try lupus uk - their advice is great. My kids were young when this all started but you are not on a death sentence - you will learn to accept this crap thing you have to deal with - it takes a strong person. Seriously check out lupus uk and get some advice/info - xx

[QueenV]

Hi I'm so glad Juelz has helped you. I agree that waiting for the diagnosis is one if the most difficult parts to this vague condition. For me I was so relieved to get diagnosed. Then the support came quickly from my excellent rheumy doctor lupus nurse & my excellent GP. As for coping with this condition I can't lie is does get me down but I try to cope a day at a time & not to look to the future. I cope with what's going at the present time. However everyone is different & whatever works for you. Have you thought of being referred to a counsellor from GP? You may find you are given strategies to help with your fears. I hope this has helped you a little. I'm new to this forum myself & have found it extremely beneficial & comforting. I'm sure you'll find it the same. Take care & keep us posted. X

[Atibrat Moderator LUPUS SUPPORT]

Hi Leah,

I was diagnosed in 2009 and it took almost 3 years since my first symptoms began. At first it was mostly fatigue. 2nd year the body aches and stiffness. I have every symptom you listed or have at times. Feeling like I have the flu is how I describe it. It actually feels like my bones are aching. I also get the pain in my sinuses and migraines. I get the red rash across my cheeks and sometimes nose and chest when I get a flare up. I also get purple eyelids that get worse with a flare up.

I also now have asthma with chronic bronchitis or chronic inflammation of my airways. Sometimes painful kidneys. The medication I am on helps. I take plaqinel and am on a low dose of prednisone most of this last year.

It is hard and at first I had mixed feelings. Scared but relieved to get answers. The hardest part for me is fatigue. I miss my old energy. I never sat still now that has changed. Like the others said it is a struggle and never know what to expect but you do somehow get used to it and it becomes your norm. I think that us with Lupus become very strong people. You manage it one day at a time with the help of your doctors and the people on here help me a lot. I even laugh and make jokes now.

My doctor told me people with lupus now usually live long lives I think plaqinel has played a part in that and other meds.

Mine has not progressed quickly but I have never gotten to a remission that I had hoped. I have pain, stiffness and fatigue all the time but prednisone helps me on that.

If you do have Lupus remember you are not alone and the medical community is advancing in this area. I learned to respect my body and listen to it. I try to eat healthier, rest more often, exercise when I can but try not to over do and learn relaxation techniques.

Sending hugs

Tammy

[lupus-support1 Administrator]

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

At one time, decades ago, lupus was poorly diagnosed and understood. Over the past 30 years, there has been a great deal of progress regarding diagnosis and treatment. Today, the majority of patients lead a normal life, have children and many come off all medication. Please do not read "old literature" and be very careful reading what is on the internet as many websites have incorrect information that is very alarmist. Websites such as LUpus Patients Understanding & Support (LUPUS) provide free information here: lupus-support.org.uk.

Diagnosis can be difficult in the UK since there are relatively few lupus specialists. Not all rheumatologists are expert in lupus and many have neither seen or treated lupus patients. In the UK, St Thomas' Hospital Lupus Unit, London is a centre of excellence under the Director: Dr David D'Cruz. If you are in the UK, you can ask your GP for a referral to St Thomas to see Dr D'Cruz. For those who have private insurance, I cannot recommend highly enough, Professor Graham RV Hughes who is at the London Bridge Hospital. Professor Hughes headed the unit at St Thomas' and has trained most, if not all, the lupus specialists in the UK. He has a syndrome named after him, Hughes (the antiphospholipid antibody) Syndrome.

In terms of your children, lupus is not a genetic condition in the way some illnesses are. In other words, just because you have lupus (or not), your children will not necessarily develop lupus since there are many variables involved. There are some families with more than their fair share of autoimmune diseases which include lupus, Type 1 diabetes, rheumatoid arthritis, MS and so on.

Even if you have a diagnosis, this does not mean a death sentence! In the past, lupus nephritis was undetected and because kidney failure was the only symptom (and no dialysis), this was fatal. Today, blood tests detect at a very early stage kidney involvement. There are many drugs available to contain and control the symptoms - not everyone has kidney involvement, just as not everyone will have a positive ANA or anti-dNA test. Diagnosis is based not just on blood tests, but on symptoms over time. If you get a referral to see a lupus specialist, which should be the case, I recommend you write down a history of your illnesses from infancy. Include everything, no matter how unrelated it may be and include any mood disorders such as depression and anxiety - give dates. The consultant will want as much detail as possible to build a picture and may even "watch and wait" to see what happens (hopefully nothing) over time before giving a diagnosis. This is because there is no single test to diagnose SLE.

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.

Be well!

Ros

[Dimpled1]

I have had Lupus since childhood (1950's) was told in early 1970's I may not survive ten years. I am now 72yrs . Way back in the olden days the prognosis was not good. I cannot tell you what else the doctor said to me because it was all negative. Diagnosis and treatments are much improved these days. Elaine Page has Lupus..and look at her. No two cases are the same. Arm yourself with information, have a good GP and rheumatologist and you are good to go. Lupus Uk is a good help. You are not going to die of Lupus. Trust me..I am old. ( not too old) !!