[AnneD]

Was diagnosed about a month ago and started plaquenil - but was in too much shock to ask much about what this might do to help, and am not feeling any benefit, just ropey tummy so far.

Sometimes I feel such a fraud, as I seem to be getting off very lightly with this compared to some of the stories I have just been reading - I've lost most of my hair, have mouth ulcers, the occasional fever, bearable joint pain... but it is the fatigue that is killing me, that and the blues. Some days it as if i only have enough energy to breath, cant speak or have any facial expression at teh same time. I feel sick with tiredness, have no spark, no light in me... I have two little children (5 and 8 ) and no energy to play with them.

My husband is being as supportive as he can - it is a huge relief to find out that this isnt all in my head, but I know that he cant really know what it is like to feel like this, especially as he is very outdoorsy.

Decided to join this forum because feel so very alone with this, don't want to be ill, dont want to be an invalid. Dont want to feel weak and sad and tearful all the time. When I think of all the energy i wasted on housework when i was well...

Going to stop now as otherwise this would be the longest post ever...!
Anne

 

[elisabethm]

:welcome:Anne you will not feel alone on this site the plaquenil takes a little while to get into your system.What meds have you been given other than the plaquenil.You will get lots of support we also have a chat room so feel free to pop into that.There will be others along to make you feel Welcome Elisabeth

 

[donna kosk]

ello anne you dont need to be alone any more now that you have found this site.
the last thing you are not a fraud we all feel for each other and support each other to and you are valid tearfull weakness sad i think we have all been there if not all most of us
its hard to be told you have lupus and very hard to get information about it but maybe you will get the care you need and we are here for support if ever you need it


take care
donna

 

[Joandublin]

Hi Anne and welcome to the Forum.

Im sorry to hear about your diagnosis but very glad that you decided to join us. You dont have to feel so alone again. Everyone here understands exactly what you are going through and its a great place to get support and advice for living with this disease.

I completely understand the fatigue you are talking about. Its the absolute pits and the hardest thing to explain or deal with in my experience. It takes a lot of energy to look after two little ones when in the best of health but its particularly difficult when trying to deal with a chronic illness :hugbetter:

The only thing I can say to you is that the Plaquenil is a slow acting drug which you may have already gleaned if you have been reading much of the Forum. It can take anything from 3-6 months on average to have any effect. Some people have reported having no discernible improvement up to about 9 months.

Also you may or may not be aware but Lupus can often go hand in hand with depression. It can be caused by the illness itself or it can be a reaction to living with it. Either way it is something that can be treated and you can get medical help. My rule of thumb is that if you have been feeling very low continuously for about two weeks then its time to see a doctor about it. Many people here on the site take an anti depressant and they find that it helps them cope better with their day.

There are also some drugs which you can take which help increase energy (Provigil comes to mind) but the problem is that by taking them your body is being tricked into having a false sense of 'energy' when often the fatigue is your body's way of telling you it needs rest. However as the parent of a nine year old I know how tempting it is to get your hands on anything that would increase energy levels.

When do you see your Rheumatologist again? It is something that you should bring up at the appointment and see if there is anything that can help. If I had a magic wand it is the one symptom that I would wave away for everyone.

Take good care and I look forward to getting to know you better
Joan:rose:

 

[dixy]

Hi Anne

Welcome here theres lots of support we know how it feels. Its a bit of a shocker when u find out u have SLE. there are so many questions and info to take in. Come join us in chat sometime.

Big hugs take care

dixy

 

[Katharine]

Hello Anne and :welcome:

I think everyone here knows just how debilitating that fatigue can be and it is so awful to have young children, a young husband (and one's young self) and just to not feel up to life much...

The good news, as the others have said, is that with treatment you should feel a big difference and life should look up immensely.

Plaquenil does take a long time to kick in but it is a wonderful drug and the mainstay of our treatment. It's also good to know that if that doesn't work sufficiently for you there are other options in treatment as well.

Don't feel bad about how much worse other people might feel. No-one's concerns are less important than anyone else's. We all suffer in our own ways and it is not fair to punish yourself further by feeling guilty about that too :hehe:

Being diagnosed with a chronic disease is not easy and we all understand that. I think the best advice that we often give here is to try and take each day, one at a time. That way it isn't overwhelming and also less frustrating. Slowly, you will learn more about your disease and how to live well with it. We'll also be here for the less good days and when you need to ask a question or two...

I would also like you to bear in mind that the people who post here on this board are not fully representative of the general lupus population. People who come here are often newly diagnosed like yourself or looking for a diagnosis. Then there are the others, who are a lot rarer, that suffer a little more severely from their disease. The vast majority of lupus sufferers are out there living their lives without much time to come on here and tell us how well they're doing

sending you huge tender hugs, bye for now,

:grouphug2:
Katharine

 

[AnneD]

Thank you so much for all your good wishes, it really helps to "talk" to others who know what it is like, and aren't already worrying about me!

Is it normal to have breathlessness/tight chest? Not all the time, sometimes i just catch my breath as if i cant breathe, or am suddenly breathless just sitting still.

Thank you all for being there - i appreciate it so much!

Ax

 

[Katharine]

Hello again Anne,

Some people do suffer from some degree of shortness of breath for various reasons which may or may not be connected to lupus and may or may not be serious. It isn't however "normal" and should always be mentioned to you doctor along with any other symptoms whether you think they are connected or not.

Katharine

 

[mamoosh]

Hi Anne

I am also newly diagnosed and recognise the horrible emotions. I am a bit further down the line with the Plaquenil than you and it will start to help. My consultant said it could start to help with the fatigue earlier than 3 months, I hope it does for you.

Can another family member take the kids off for a day out somewhere so you can just have a lie down?

Someone elsewhere on this forum mentioned the pacing technique to help with their fatigue levels. I applied something similar to my exercise regime and built up v slowly - it did help the tiredness. I also did gentle yoga at other times. You only have to do one move if that's all you are up for! I practise meditation from time to time and that helps me stop thinking about all the 'what if's'.

I think I read advice somewhere else here about stomach problems on Plaquenil and how people minimised them...perhaps it was on another website during that endless googling...

All the best
Mamoosh

 

[onetay]

Anne,
Hi and welcome to the site. The plaquenil will take up to 6months to level out in your system and have any benefit. You might notice as time goes on and days go by you might have some pretty good days. The tummy is pretty normal, try taking milk or some small amount of food when taking the medicine, it sometimes helps with the stomache issues.

Lupus is a real disease with real pain and real day to day problems. The difference is that most of us look healthy and feel crappy. If there was a way for the outside world to see in side the body they would know that it is a struggle just to do the things that they do everyday with ease. You feel like a fraud because the outsied world works hard to make us feel like we are just being lazy, crazy, or whinney. It seems like all they have done is convience you that you are making it all up. I hope you feel better soon.

 

[AnneD]

Thank you so much for your understanding - it means a lot to be in touch with other people going through the same thing, for the first time. Hope you are all having a good day! Ax

 

[alimonkey]

Hi Anne

I'm newly diagnosed too - about the same time as you so I know exactly what you're going through. I feel a bit of a fraud sometimes too - my main symptoms are fatigue, joint pain and fatigue. Sometimes I look and feel rather healthy, today my joint pain isn't that bad, but my face and neck are as red as a beetroot and I feel like I haven't slept for a month. To make it worse I arrived at work to find a 'special chair' which kind of makes me feel a bit worse really, it kind of reminds me that I'm not well. And I'm in an open plan office so it makes me feel singled out!

Anyway, hope you feel a bit better soon - my tummy's a bit grim because of the medication too - Plaquenil and dicloflex.

 

[KarolH]

Hi Anne and welcome to the forum.

Hope to get to know you better.:wink2: