Help

[jilly60]

Is anyone with sale having problems with short term memory loss confusion and clumsiness x

[Atibrat Moderator LUPUS SUPPORT]

SLE and a big yes to all I do not know the reason but think many people do. Maybe the same reason for fatigue. I never had any problem with any of these until I became sick 7 years ago.

[Dawn1977]

Yes! My rheumy suggested it was to do with my sticky blood and put me on daily aspirin which seems to have done the trick. It's known as Lupus brain fog, and is very common. Mention it at your next appointment. Xx

[jilly60 in reply to Dawn1977]

Thanku for your reply but my rhumy is very well let's say unhelpful I feel alone with this x

[IrishLupie]

Yep, you're another one of us foggy types. This phenomenon, known as lupus fog, is well known to myself and many others. Talk to your rheumy about it and maybe they can suggest a plan of action. Some SLE meds seem to help some people with it but it seems completely random, there's no med that works for everyone and sometimes nothing will completely cure it. I've heard Plaquenil does it in many cases but for me only IVIg works.

[lupus-support1 Administrator]

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

What you describe is very common, but I would speak with your rheumatologist, especially about the clumsiness which is unusual.

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

[TM1970 in reply to lupus-support1]

Hi Ros, im trying to sign up to the message board but it's telling me im putting in an invalid dob? what is correct format? ive tried with a / and a .! sorry for hijacking this message.

[lupus-support1 Administrator in reply to TM1970]

The date format is: nn-nn-nnnn where n=number. Please only use the "-" separator (without the quotation marks!)

[jilly60 in reply to lupus-support1]

Thanku for your reply I do feel totally alone with this I don't really understand or accept what is happening to me all I know is it's hard to accept confusing and pretty scary x

[lupus-support1 Administrator]

What you are having to cope with can feel confusing and scary. However, you do not have to deal with this alone. I do recommend the LuPUS Message Board because it is more private. We also offer an online psychological support service.

It is also very important that you have a lupus consultant who you feel you can talk to. Most people will have many questions and when we are with the doctor, it is easy to forget to ask something which we remember when we have left the consultation. I recommend you write down all the questions you have so you can go through what you need to know.

One of the ways we can feel alone is because we just don't know or understand. Therefore, one way of feeling empowered is through knowledge. While your consultant is the best person, what happens if they are unhelpful? If you are seeking help using the internet, you must be very careful as to where to get information. While people may identify with you, they may not be doctors so don't take anything without telling your doctor - some natural remedies may contraindicate with the medication you are taking, so always talk to your doctor.

Finally, today lupus does not mean the end of the world. Diagnosis and treatment is much better. Many people come off all medication and lead a normal life, have children and so on.

Talking about your feelings is also important and sometimes talking to an outside is better because some of what we feel may be too difficult to talk about to our spouses, partners, family or friends.

Be well!

Ros

[faceit]

Omg yes terrible memory lost. Daily i have to ask people for help expressing c what I'm trying to say because i can't remember the word. I'm only 50 how bout you?

[faceit]

Omg yes terrible memory lost. Daily i have to ask people for help expressing c what I'm trying to say because i can't remember the word. I'm only 50 how bout you?