What is life like once a diagnosis has been reached and on medication ?

[Lisalou19]

Past few days have been awful for me. I think I’ve suffered so many years and tried so many different things to make myself feel better I think I’ve finally realised that I haven’t been given a normal life with a healthy body.

I’m on my own with 3 children , often they find me sleeping or crying due to feeling so unwell . I know it must be awful for them to see.

The support from my family is pretty rubbish, I’m tired of telling them how I feel and to get the response “you will feel better soon”. My children rely on me for so much. I hardly ever arrange a day out as I never know how I am going to feel.

My question is really , will any of this get any better once I am medicated ? Or Is this the life for me?

Feeling pretty hopeless. I think the lack of sleep is getting to me.

[Sara_A]

Yes... there is a chance u may feel a lot better with medication. When I was initially diagnosed in early 20’s I was just put on steroids and hydroxychloroquine and seem to recall that I felt pretty good and ‘fairly well’.

I then stopped the hydroxychloroquine about 10-12 yrs later when I had my children and was always good when pregnant cos of the hormones I think but then have struggled to get back to anything near ‘well’ again.

It depends what problems u are having really, as things like migraines I have treatment for and that helps and I take clopidogrel for aps which helps with the headaches and brain fog.

So yes there is a chance u can feel better.

Obviously it can take some time to find the right treatment for u etc and no it doesn’t always work for everyone but there is definately hope!

I really don’t know how u cope on ur own with 3 kids as I really struggle with 2 and a partner!! I really feel for u and am sorry that nobody seems to be being very helpful to u!

Is there anyone that could help if u just said ‘right look, I feel crap I need help!’

Where are u with diagnosis/ treatment etc??

[Lisalou19 in reply to Sara_A]

My symptoms started after my 2nd, then when I was pregnant in 2013 I felt the best I had in years. All symptoms vanished until my son was approx ten months old!!!!! The symptoms have increased ten fold. I mentioned this as you mentioned pregnancy too

My main struggles are the extreme fatigue and lack of concentration Followed by the burning rash . I feel half the person I normally am

Lately my hands have become affective , covered in rash and very stiff to move.

I have a Mum & Dad, but my dad spends his time making sure my mum is happy. I’ve cried so many times to them but it gets me no where.

It’s difficult for me as I’m always the first to help when they need it. I literally try & get on with things the best I can, but just can’t imagine life always being like this

X

[sarahsch]

Hi Lisalou,

I really feel for you. I know how low I felt before treatment & every day was a colossal struggle against fatigue & pain.

Where are you with medical care? Are you seeing a Rhemy? Rhemy no.3 eventually tried a 3 month trial of hydroxy & I have never looked back!

As the risks from hydroxy are low, and your symptoms & caring responsibility are significant, then a trial would seem appropriate.

Sarah x

[Lisalou19 in reply to sarahsch]

I finally went to see a doctor privately, I rang around in a desperate bid back in January. I ended up in front of my dads doctor who treats him for rheumatoid arthritis would you believe .

He has been most helpful and made a referral back to him under the nhs.

I now need to wait until June to see a rheumatologist dermatologist. I can wait that long as I’ve waited so long already but at the minute I am getting no respite from my symptoms.

It’s hard to make any plans or decisions as I just don’t know how I will feel.

X

[sarahsch in reply to Lisalou19]

Hang in there. June isn't that far away & on the NHS you will not be able to see anyone else sooner.

Its taken me 8 years & 5 Rhemys until one of them final told me what I have, and that was only last week. I dare not say its name in case I jinx the diagnosis!

But lack of diagnosis should not mean lack of treatment. Focus on getting to the June appointment. Then layout your issues & caring responsibility and ask about a trial period of hydroxy to see if it would help you cope better.

Good luck & stay strong. We are always here for you.

Sarah x

[Lisalou19 in reply to sarahsch]

Awe bless you

I’m just going to stay focused, I feel awful today but took the children out, not for long as my feet are really painful today and my skin is unbearable. I really want my children to know I’m doing my best.

The doctor I have so far has been a super star. I have every faith he is going to get me the answers I need

Xx

[Chanpreet_Walia LUPUS UK]

Hi Lisalou19,

I am sorry to hear that you are not getting the support that you need at the moment, have you thought about asking any friends for help?

Sometimes certain situations can be tough which is why speaking to someone can help relieve some worries that you may have. We have a list of LUPUS UK Contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at [e-mail] with your name and address.

We published a blog article which has a section discussing what happens next to those newly diagnosed, you may wish to read it here: lupusuk.org.uk/getting-diag...

Medication should help reduce symptoms; it is important to bear in mind that lupus presents differently in everybody therefore, no two people will share the exact same experience. If you have recently been put on hydroxychloroquine, it is worth noting that it can take up to six months for it to exert its full effects. To read our factsheet on ‘LUPUS: and Medication’ click here: lupusuk.org.uk/wp-content/u...

Regular exercise helps to improve sleep quality. Exercise should be done at least a couple of hours before going to bed; otherwise, the mind may be too active, making it more difficult to sleep. We published a blog article on exercising with lupus which you can read here: lupusuk.org.uk/lupus-and-ex...

The NHS Choices’ website provides information on sleep hygiene which I hope you will find useful: nhs.uk/LiveWell/sleep/Pages...

Here is a link to our lupus and the skin booklet: lupusuk.org.uk/wp-content/u...

Please let us know how you get on.

[Lisalou19 in reply to Chanpreet_Walia]

Thank you for your kind reply

I think the sleep deprivation is getting to me, I was always such a good sleeper

As for friends , I’ve kind of lost most of them along the way. I can’t drink alcohol as it makes my symptoms worse and I often have to cancel arrangements as I’m too fatigued. No one seems to understand it.

I will email you directly thank you. I’ve spent most of today in tears. It’s not depression, I think it’s my way of screaming for help.

Xx

[Sara_A in reply to Lisalou19]

Please feel free to ask anything or just have a moan, I really feel awful that u aren’t getting any support and that u are just sat home crying x

[Lisalou19 in reply to Sara_A]

I received some email contact numbers today to talk things through

It’s just such a hard illness to talk about as no one can see your pain. My mum doesn’t even message to see if I’m ok Just left until I manage to pick myself up again. Sometimes the reality of it all it’s just so over whelming . I know in time I will be ok, again. Then you pick yourself up until you come crashing back down again.

I also think no matter how old you get, you still need your mum

I’ve been awake since 2am this morning, the lack of sleep is taking its toll

Xx