View Full Version : New to the Forum
~❀ Robyn ❀~
05-19-2011, 02:04 PM
Hello all :)
I was diagnosed with Lupus 2 weeks ago and Im very confused...
There is so many strange things going on with my body and its freaking me out abit.. Im hoping reading all your posts I start to learn more about this disease.
Little bit about me:
Im a 33 year old Mom of two.. I have two wonderful children ages 12 and 10. I also have a very loving and supportive husband. I live in Calgary, Alberta Canada and before I went on leave I was a Medical lab assistant.
Thank you and Im looking forward to getting to know all of you
05-19-2011, 02:20 PM
Welcome to WHL and it's lovely to have you with us and by venturing the threads you'll learn so much.
Besides diagnosing you with Lupus have they told you if you have any A1 Diseases or any Autoimmune Diseases beside Lupus itself.
All the things your feeling are from Lupus, i have all that myself and your life and doing things as to be spaced out, doing things to quickly can ware you out and make you ache even more. When your having tests to do with Lupus, it also loves fluctuating the bloods, so if something comes back negative it could be positive and it also thrieves on depression and makes the body feel worse.
Browse around and it will be lovely getting to know you and i've added info about Lupus and it's symptoms below for you incase it helps in anyway.
~Hugs Terri~ xxx
05-19-2011, 02:27 PM
Information on Lupus
Lupus is an uncommon, complex and poorly understood condition that affects many parts of the body and causes many different symptoms ranging from mild to life-threatening. Some common symptoms of lupus include:
•joint pain and swelling
Lupus is an autoimmune condition, which means that it is caused by problems with the immune system (the body’s natural defence against illness and infection).
In people with lupus, for reasons that are not clearly understood, the immune system starts to attack healthy cells, tissue and organs. As with other more common autoimmune conditions, such as rheumatoid arthritis, it is thought that a combination of genetic and environmental factors are responsible for triggering the onset of lupus in certain people.
Types of lupus
There are several types of lupus. The main types are:
•discoid lupus erythematosus
•systemic lupus erythematosus
These are briefly outlined below.
Discoid lupus erythematosus
Discoid lupus erythematosus (DLE) is a mild form of lupus that only affects the skin. It causes symptoms such as:
•red, circular, scaly marks on the skin that can thicken and scar
•permanent bald patches
DLE can usually be successfully controlled using medication and by avoiding exposure to direct sunlight. DLE usually only affects the skin but, in some cases, it can progress to the body’s tissues and and organs (systemic lupus erythematosus – see below).
There are over 100 medications that are known to cause lupus-like side effects in certain people. Lupus caused by medication is known as drug-induced lupus.
Stopping the course of medication will usually help to resolve the symptoms of drug-induced lupus.
If you are concerned that your medication may be causing lupus-like side effects, discuss the issue with your GP. However, do not suddenly stop taking any prescribed medication without first checking with your GP.
Systemic lupus erythematosus
Systemic lupus erythematosus (SLE) is a type of lupus that can affect most of the body’s tissues and organs. SLE is what most people mean when they use the term "lupus".
The rest of this article will focus on SLE.
How common is lupus?
SLE is an uncommon condition, with 90% of cases occurring in women. Most cases of SLE first begin in women who are of childbearing age (between the ages of 15 and 50).
There are marked differences in how widespread SLE is among different ethnic groups. For example, in the UK:
•one in every 5,000 white women will develop SLE
•one in every 1,000 women of Chinese origin will develop SLE
•one in every 625 Afro-Caribbean women will develop SLE
There is currently no cure for SLE, but there are a range of different medications that can help to relieve many of the condition’s symptoms.
The outlook for SLE varies widely as the symptoms can range from mild to severe. Many people will experience long periods of time with few or no symptoms before suddenly experiencing a sudden flare-up where their symptoms are particularly severe.
However, even mild cases of SLE can have a considerable impact on a person’s quality of life because many of the symptoms, particularly chronic fatigue, can be distressing and cause feelings of depression and anxiety.
With good levels of support from friends, family and healthcare professionals, many people with SLE learn to manage their condition effectively.
SLE can sometimes cause a range of serious complications, such as kidney and heart disease, and the treatment may make a person vulnerable to serious infections. This is why 50 years ago SLE was regarded as a terminal condition, as most people would die of a complication in the first 10 years after being diagnosed.
Thanks to advances in treatments, now most people with SLE have a normal, or near normal, life expectancy.
05-19-2011, 02:29 PM
Symptoms of Lupus
The symptoms of systemic lupus erythematosus (SLE) can vary from person to person. Some people with the condition may only experience a few mild symptoms, whereas others may be more severely affected.
The symptoms of SLE can also appear in "flare-ups". This means that although you may always have mild symptoms, during a flare-up your symptoms may become more severe.
The three primary symptoms of SLE are:
These are described in more detail below.
Fatigue is one of the most common symptoms of SLE. You may feel very tired even though you get plenty of sleep. Carrying out everyday tasks, such as household chores or office work, can leave you feeling exhausted.
Many people with SLE have reported that fatigue is the most distressing and disruptive aspect of SLE because it has a negative impact on their work and social life.
If you have SLE, you are most likely to experience joint pain in your hands and feet. You may find that the pain changes from one set of joints to another quite quickly. However, unlike some other conditions that affect the joints, SLE is unlikely to cause your joints to become permanently damaged or deformed.
In people with SLE, skin rashes most commonly develop on the face, wrists and hands. A rash over the cheeks and the bridge of the nose is particularly common and is known as a "butterfly rash". Skin rashes that are caused by SLE may be permanent and can be made worse with exposure to sunlight. This is known as photosensitivity.
As well as the primary symptoms listed above, SLE can also cause a number of other symptoms. However, if you have SLE it is unlikely that you will have all of the symptoms listed below, and many people with the condition will only experience the primary symptoms.
Other symptoms of SLE may include:
•high temperature (fever) of 38C (100.4F) or above
•swollen lymph glands (small, bean-shaped glands that are found throughout your body, including in your neck, armpits and groin)
•recurring mouth ulcers
•hair loss (alopecia)
•high blood pressure (hypertension)
•anaemia – a condition where a lack of red, oxygen-carrying blood cells can cause fatigue and shortness of breath
•Raynaud's phenomenon – a condition that limits the blood supply to your hands and feet when it is cold
Hi Robyn! First let me welcome you to WHL. We are so glad that you found us! This is a very confusing disease to have and we have all been where you are. I felt such relief when I found this forum. The people here are so kind and so helpful it made having this disease a little more bearable. Please feel free to look through the old threads or start new ones if you wish. I look forward to getting to know you and, once again, welcome to the WHL family!
~❀ Robyn ❀~
05-19-2011, 02:50 PM
Thank you to you both for your warm welcome and suport. :)
It was soooo nice to find this Forum!!
05-19-2011, 03:02 PM
Well like tgal said it came of a shock to me like yourself but found out more off the specialist after but joining WHL was the best thing i did and we're all so loving and carrying being in the same position and no judgement is passed and that's the support we all need, to get through this.
05-20-2011, 05:32 AM
this disease has no boundaries.
i, like quite a few others on here am from australia.
this site is excellent, i hope you feel at home here.
05-21-2011, 12:01 PM
I just wanted to pop in to make sure that I, also, welcomed you to our family. You have been given some excellent information as well as received welcomes from other family members here.
I am so happy that you decided to join us :-) Please know that we are always here to help you in any way that we can. Cruise around, read some of the posts, browse through the "stickys" and join in on any conversation that you like. Again...welcome!
Peace and Blessings
06-01-2011, 01:47 AM
How are you feeling in yourself and i hope you've got a better day today, please keep we updated on how you are?
((Hugs Terri)) xxx