Systemic Lupus Erythematosus can be from very mild to debilitating.
The first symptoms in lupus symptoms in women can be…
Systemic Lupus symptoms in women left undiagnosed and untreated can become more serious and even life threatening.
Lupus effects each person very differently no one persons symptoms will be the same. What all lupus sufferers have in come is that their body is under attack from itself.
Lupus is not contagious and so you cannot catch it from another person. It would seem that certain people are more prone to developing lupus than others. A family history of other autoimmune conditions within the family are very common. It can be quite common to suffer from more than one autoimmune condition.
When your antibodies turn on themselves and begin to fight healthy tissues these are then called autoantibodies.
What is Lupus
|Lupus is an Autoimmune Disease, and effects women nine times more often than men. Systemic Lupus Erythematosus or SLE is also known as the great mimic – It can quite often be misdiagnosed as ME or Multiple Sclerosis.|
There are several forms of lupus
|The most common being Systemic Lupus Erythematosus.
Others being Discoid and Drug/Food induced Lupus and Lupus nephritis which is a kidney disorder that is a complication of Systemic Lupus Erythematosus .Lupus Symptoms in women can also have other conditions overlap/associated, such as Sjogren’s Syndrome, Raynaulds Syndrome, Hughes Syndrome (sticky blood), Under-active Thyroid and occasionally Over-active ThyroidLupus symptoms in women can not be cured at present,but in most cases they can be controlled so that you can enjoy your life.It is not known why the body does this, but it is thought that some sort of trigger starts this off. Some of the common triggers are immense stress, envoiromental factors, and illness. Certain types of drugs can also induce lupus. Although due to this fact there is no cure for Lupus, with the help of modern day medicines lupus can be kept under control so that you can live a full and acitive life.You may also find that you have periods of time, in some cases years, where you have no symptoms. New drugs are becoming available to treat lupus.
Systemic Lupus Symptoms In Women and My Experiences.
Exhaustion and Systemic Lupus Symptoms in Women
|The chronic exhaustion started when I moved into my first house with my husband, along with this I lost my sex drive (lupus symptoms in women is not funny) being a young person at the time I felt that I could not discuss this with my doctor.
To begin with this caused a few problems, which still needs to be addressed today. I am determined that this situation needs to be changed and I am now sorting out this problem.
Sun Sensitivity and Systemic Lupus Symptoms In Women
|It has taken a long time to discover that I am actually Sun Sensitive due to my lupus symptoms in women, on camping holidays I would develop severe headaches and become exhausted. So needing a sleep every day while on holiday I put this down to having 4 children and being in the “great outdoors”. I now know that this is not the case, as these last few years I have managed to have a few days camping along with my husband and this still happens.
The same happens when I have spent family days out or walking.For the last 8 months I have been seeing a Counsellor to sort out my life and learn to identify what symptoms and feelings belong to which problem to ensure that each of the problems can have the correct treatment.
Lupus Symptoms in Women and Sleep/tiredness.
|Its been my experience that when people say they are tired then they are talking about a tiredness that happens when you have had a busy day or not got to bed in time so that they have had a full nights sleep.After many years of spending a lot of my day asleep it has become clear to me that I suffer from at least 3 different kinds of tiredness.|
- Lupus Symptoms In Women
The kind of tiredness that people refer to as for a better name, I will call Normal Tiredness. This for me consists of feeling slightly tired and I also yawn a lot and I will also be happy to say to anyone that I feel tired. It also comes on slowly during the day.
- Lupus Symptoms In Women
My second kind of tiredness which I will call Lupus Tiredness is very different. It does not come on slowly I either wake up feeling exhausted and then when I get out of bed its like walking through jelly, or it can happen at any point of the day and comes on like putting a light switch on.
I do not have any warning and so I cannot prepare myself for it. My head becomes very heavy, I find it difficult for my brain to function and moving about takes all my energy and when I sit/lie down I am out asleep the moment I am comfortable. When I have this kind of tiredness everything comes to a stop and I go sto sleep. I will not tell anyone that I am feeling like this.
- Lupus Symptoms In Women
My third kind of tiredness has been really hard to seperate from the other two. This one I am going to call Depression Tiredness as this is what it is for me and as many Lupus Symptoms in women are likely to suffer with depression at some time in their life I have decided to add this one as well.
Depression tiredness for me is a mixture of the above two. I feel tired like I would do if I have had a busy day,the tiredness develops over the day and does not come on all of a sudden, the need to stop what I am doing is fairly strong but not as strong as the lupus tiredness.
The difference here is that I can identify a trigger and that I feel weepy, low and upset. This tiredness does not go with a good nights sleep, it will hang around all day for many days or weeks.This Depression Tiredness stops when I begin to feel happier.
I quite often find that when I am in pain I will get depression tiredness or if I have been under a lot of stress.
Lupus Symptoms in Women and how to pace yourself.
|Systemic Lupus Symptoms In Women patients are often told that they need to pace themselves doing this will make life easier and less tirering. I am sure like many other sufferers of lupus symptoms in women, I have found this is very difficult to do. Family and work commitments make this very difficult as things need to be done by a given time.For many years I have been told by my Rheumatologist that it is very important for those like me with lupus symptoms in women to pace themselves.
What I hadn’t realised was my understanding of pacing myself was very different to my Rheumatologist idea of my pacing myself. This went on for many years until I attended a pain management presentation.My understanding of pacing myself was to split my day up into sections. I would start off by having breakfast and getting my four young children ready and off to school. Then once they had gone I would start on the house-work and do as much as possible before lunch. I would then spend the afternoons relaxing or catching up with friends. Then I would prepare tea and spend time with my family, running my children to numerous activities, reading books, playing games and as they got older help them with their homework.
As I was keeping my afternoons for quiet restful time I thought this was what was meant by pacing myself. What I hadn’t realised by doing so much in the mornings my resting time was not helping me, it was just allowing me to get through to the end of the day before falling into bed exhausted.
With lupus symptoms in women you have to have small chunks of activity.
What my Rheumatologist had meant by pacing was not to ware myself out by doing loads all at once. I was to break my day up into smaller sections and to have lots of breaks in between chores.Once I understood this about lupus symptoms in women I changed my whole way of life as follows. I would get the children up and ready for school, then have a coffee break and plan what needed to be done through the day, if I was having a day where I am feeling ill I would decide if I could possible leave certain chores for another day and only complete the important ones. Once this was sorted I would then make a start on the chores making sure that I listened to my body and had plenty of rest breaks. Some days I would have to stop more often than others depending on how well I felt. An average morning went from no rest breaks to at least two or three. This meant I spent longer doing the chores, but I was not wearing myself out and so the rest in the afternoon was more beneficial.Much better at coping with lupus symptoms in women – After keeping to this way of life for a few weeks my family and I found that I was coping better with life, happier in myself, not in so much pain and I actually had more energy.On my good days I am still very tempted to go overboard and do too much as I hate to see things that need doing not being done. I also think if I get it done now I will have more free time later on. This is not the case what normally happens when I do this is, I end up having to rest more. My husband is now much more helpful and he also reminds me not to do too much.There are exceptions to this pacing that I have put into place and that is family days out and family holidays. I want to be able to be able to keep up with my family and participation in these activities. These times are very special for me and I am not prepared to let my Lupus symptoms in women rule this part of my life. So when something has been planned, I always make sure that I have two or three days afterwards free so that I can rest and refresh myself and I can tell you that I really need to do this- It’s almost like having Jet-Lag, you have to give in and let it take its course.
A lupus symptoms in women “Flare” can last years.
|For the last few years I have been struggling with a Lupus symptoms in women “flare”, and this has put a lot of stress on me and my family, so I have also had to think about other things that I can do to make life easier for me.
With my lupus symptoms in women food shopping was a really big problem for me as the pain and lack of energy made it very difficult to keep on top of the food shopping. Their have been quite a few times when I have stood in the que to pay for my shopping when I have thought I was going to pass out as I felt so ill. The solution to this was really very easy, I started to do my food shopping over the internet and made arrangements to have it delivered when someone else was at home to help me put it away.Having lupus symptoms in women and four children all with different interests and wanting to be at different clubs at different times in different parts of the local towns was beginning to be a real big problem their were times when I felt so tired that I felt I wasn’t safe to drive. This is when I had to accept help from my friends at first it felt like I had lost my independence by asking them to run my children around to clubs. Once my children were old enough to make their own way to places they used the local bus service. This worrid me an awful lot that my children were going to places on their own would they be safe. This is when mobile phones became a very important item for us all to have any problems and they just rang me. They also began to take themselves school uniform and clothes shopping.This has had a good effect on my children they are very independent and caring children.
Doctors and consultations – Re. Lupus Symptoms in Women.
|I have decided to talk about doctors and consultants as they have had a big impact on my life physically and mentally.
I use to think that doctors and consultants were trained to treat, cure our symptoms and illnesses – In my case my lupus symptoms in women, it had never occurred to me that this was not the case. So my expectations of my visits to start with were very high and I couldn’t understand why I wasn’t beginning to feel better.
Doctors and consultants can only help when they know exactly what they are treating.
|With Systemic Lupus symptoms in women, Doctors and consultants can only help when they know exactly what they are treating. A lot of the time I have found that it has been trial and error before I had any improvement in my health.
This has been very frustrating and upsetting when my lupus symptoms in women have gone on for months and no sign of them improving.
Appointments for lupus symptoms in women can be very short in time, rushed, unsatisfactory and many months apart.
So it is very important that you prepare yourself well before hand by making a lists of all your systemic Lupus symptoms in women and related things that you want to discuss, making sure that the important things are discussed first so that if you do run out of time you won’t feel so disappointed.
I tend to make notes and keep pictures of all rashes and swollen joints as I have never attended an appointment yet when the lupus symptoms in women are obvious to see.
It feels that I spend an awful lot of my time sitting in waiting rooms and discussing my systemic lupus symptoms in women problems with doctors but I have never thought about the impact it has on my life mentally, till recently.
I have found that visiting and waiting for appointments emotionally its like being on a roller coaster and that I go through many feelings. I have now given them some thought and feel that I would like to share my findings and try to address these feelings.
In some cases the emotions I go through are worse than the actual consultations.
When it gets close for an appointment perhaps a couple of weeks before I start to plan what I want to talk about, I feel relieved that I can at last talk about some of my lupus symptoms and hope that something can be done to help me.
Lupus Symptoms in Women – The dreaded word – FIBROMYALGIA
|I also get quite nervous as well in case the doctor makes another diagnosis and add more things to my growing list of conditions. Being given a name of a condition is not always helpful and at times can make further treatment difficult, especially if you are told that you have a condition (fibromyalgia) that covers all symptoms and so the doctor stops doing further investigations. You have had a “don’t bother us any more” label stuck on you with that one…. It’s referred to as “the Waste Bucket Disease” by the more knowlegable Lupus symptoms in women sufferers!
I also feel happy as I have high expectations at a consultantation and expect to have answers to my questions and a plan of action to help me feel better. For a long time I didn’t think I was being unrealistic at these consultations and so they had a big impact on how I felt and delt with my illnesses.The Lupus symptoms in women consultations themselves are very varied and I have had different outcomes, I have come away from the consultation cross, happy, depressed, disappointed and happy.
Lupus Symptoms In Women – What causes these feelings is the attitude of the consultants.
|What makes a good lupus symptoms in women consultation - for me is a consultant who has taken the time to read my notes before he sees me. A friendly smile or gesture as I enter the room to put me at ease. A consultant who goes through the results of previous tests and explains to me what this all means. A consultant who listens to what I have to say and explain to me why I can or can’t have certain treatments. I also find that an action plan set up to follow to the next visit also helps. These actions make me feel relief as I have been listened to and taken seriously. If I come away from these appointments with no treatment at all this does not bother me, as I know there is no need for further treatment. Feeling happy that all has gone well will see me through to the next appointment, which may well be many months away.
The appointments for Lupus Symptoms In Women should be every three months, especially if you are starting a new treatment. At this time it is more likely to be every six months and in some cases up to eighteen months, which has to unacceptable, especially if you are experiencing “silent” problems.I have come away from quite a few of my lupus symptoms in women consultations in tears and feeling very depressed, this is usually due to the fact that the consultant has not read my notes and quite clearly does not know very much about Lupus symptoms in women.
Not being given any explanation on tests being done or results from test already carried out, or a consultant who quite clearly does not show any interest in what I have got to say and has nothing helpful to say to help you feel more able to deal with the Lupus symptoms in women and then stands up and says see you in six months…
This really upsets me because I feel it was a waste of my time going as nothing has been solved and that dread of having to wait a further six months before I can get another chance to discuss my Lupus symptoms in women and concerns.
When you are ill six months can feel like a lifetime and you find yourself counting down the weeks before you have another chance to help yourself.The Lupus Symtpoms in women consultations I have come away from cross and angry are normally down to the fact that I have been belittled, or given advice that is impossible to do or just not appropriate for the condition I have. Not being listened to and made to feel I am making it all up, or even worse its all in your head and you are just imagining the symptoms, just because I look well doesn’t mean I am well this often happens with Lupus symptoms in women.In between Lupus symptoms in women appointments I also go through many feelings. At times I can become quite frightened when new symptoms develop and I am not sure if I should be taking action straight away or whether it can wait the x months I have left before my next consultation. At other times I become cross and angry as I quite often receive letters cancelling my Lupus symptoms in women appointments and changing them from six months to as long as eighteen months. Other times I feel relieved when my appointments are later rather than sooner as when I feel well I don’t want to be hanging around waiting rooms.Systemic Lupus Eryhthematosus waiting rooms are also a place where I go through many emotions. I use to get very cross and agitated if I had to sit and wait long past my appointment time. Now I am more patient and look at it, if the consultant is running late he may well have given a certain patient more time as they needed to sort thing and if that is the case then I know I will also get the treatment and time I need. Sometimes I sit and worry that the consult may be cross because I may have not been able to follow previous instructions, or I may have left a new Lupus symptom in women too long before seeking treatment. Or that I am unable to get across how I feel about a certain symptom and how it is affecting my life. My worse fear is that the consultant won’t believe me. Other times I feel happy and relaxed as I have had a good time between appointments.
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