Fatigue with Lupus.

[Jessicaa19]

I have recently mentioned at the doctors about my tiredness and if there is a possibility that it's linked with my Lupus. I've had tests done and nothing has shown up and they have said that it could just be because I'm a teenager. I have about 8-10 hours sleep without any disturbance and I still seem to want to just sleep more. I did some more research and it has said that hydroxychloroquine can have an effect. Is there anyone that can give me any advise on feeling less tired?

[jojo-lianne]

Hi Jess,

Welcome to the forum, I'm glad you found us

I can completely sympathise with this! Fatigue is a classic lupus symptom and often one that can be overlooked initially.

When I was a teenager (10 years before my diagnosis) I used to come home from school, pass out cold in bed for a few hours, get up for dinner, attempt my homework and watch a bit of TV then went back to bed around 9.30 and still struggled to get up for school in the mornings. I think my parents just assumed I was lazy! I had loads of other weird symptoms and always had mouth ulcers but they never thought it was worth bothering the GP for.

I can't say whether hydroxychloroquine will definitely help your fatigue, it's eased some of my symptoms, but it would definitely be worth discussing with your rheumatologist! It works by dampening down the symptoms of our disease so basically takes the edge off. It works well for joint pain and skin trouble in most patients.

The big thing that helps with my fatigue is actually exercise. I try to make sure I do something active every day. I teach one zumba class each week as well as occasionally covering another class and aside from that try to keep it low impact with yoga and swimming. It's a very fine line learning when your fatigue will be helped or hindered by exercise though. Sometimes it's best just to try and make sure you have a rest day or just do a little more walking than usual.

Never stop pushing your Dr's for answers and solutions. If your treatment isn't working for you there is nearly always something else you can try. I know alongside myself there are also lots of us in the forum that complement our treatment with holistic therapies like reiki, meditation and naturopathy as well as changes to our diet and supplements.

If you're ever looking for advice the forum is always a great place to ask. Everyone is really friendly and happy to help out.

I hope that helps a little!

Xx

[Jessicaa19 in reply to jojo-lianne]

Thank you Jojo,

My parents both blame me for just being lazy and it's hard to describe how tired I actually feel. My doctors have up'ed my dosage from 200mg to 400mg and I was thinking that this could be the problem. I must admit that I don't do as much exercise as I should and it's really hard to get motivated to do things and to fit in with work and college. I'd say that I used to have loads of energy and mess around but within the last year I've just felt down and inactive.

As random as this sounds but it's nice to know that people are on your side out there and that they know what's going on as it is rare and I've never met/talked to someone with Lupus even though my doctors told me that they where going to do meetings etc.

xx

[Paul_Howard Partner LUPUS UK]

Hi Jessicaa19,

Tiredness is one of the most common symptoms of lupus so there it could be linked to your condition. Have you noticed any other symptoms flaring up too?

We wrote an article a while back about fatigue and collected people's tips for coping with it. You can read it here - healthunlocked.com/lupusuk/...

If you're interested in meeting other people with lupus that are your age we have a group that meets in London (I don't know if this is practical for you)? You can find out more at lupusuk.org.uk/young-people

[Jessicaa19]

Hi,

Thanks for that I'll have a read through. London is 3-4 hours away so I wouldn't be able to do that. The hospital was on about going on trips and that with other Lupus patients to get to know things about each other but it never seemed to come around.

[Hidden in reply to Jessicaa19]

Jessica,

If there is a group closer to you, I would try and get along to it. For me, it was possibly the most uplifting thing I have done since being diagnosed with an overlap of conditions. I have been off work with extreme fatigue, anaemia, low thyroid and, before I was put off, pains in all my joints. Being recently diagnosed I was despairing that this was just going to be my new norm.

It was reassuring to meet people with similar experiences to mine to know, first of all, it wasn't all in my head and secondly that they were back working, being productive and leading 'normal' lives with families and work etc.

I understand the whole people not believing your fatigue business when I was a teenager I developed Graves Disease which causes hyperthyroidism... People get that hypothyroidism causes fatigue so they assume you should be full of energy when your thyroid is overactive. I used to feel awful when people looked at me sceptically on days when I couldn't get off the settee.

Until people have experienced that sort of fatigue you can't just push through they really don't have a clue. You could maybe bring a family member with you to the support group. I'm older, but I still brought my mother with me as she wants to know as much as she can about this disease - she also found it very reassuring as well.

As for the hydroxycloriquine, it is supposed to help fatigue but a haematologist I saw recently was wondering if it could be causing some of my fatigue. I really don't know. I want to get the anaemia and thyroid function sorted first and then see if I can improve my energy levels through diet and exercise. (I used to lift weights, run, do Zumba, go to early morning spin classes so this feeling knackered all the time is doing my morale no favours!) im hoping I will see my rheumatologist some time after Christmas and we can discuss it more then. In the meantime I'm keeping on the Plaquenil. It seems to be the drug of choice and have the least side effects of all the treatments you could be taking.

I hope you get some sort of relief from your fatigue soon. I work with teenagers, and fatigue is not usually an issue with them. You are not lazy so don't let anyone tell you that. Make sure you have other possible causes of your fatigue investigated.

Best of luck to you. Hopefully soon you will see some sort of an improvement.

[largesse]

Hi Jessica19. My daughter was diagnosed with sle at 19. Four years on and fatigue is a major issue, although she does work full time. Her nephrologist gave her an iron infusion some time ago which did help for a while. For some reason consultants don't seem to place much emphasis on fatigue even though so many lupus patients suffer from it.

I hope you find your own way round it. Good luck

[Jessicaa19 in reply to largesse]

I was diagnosed around the age of 13 and being tired has only just come around this year and i am having bad head aches but due to have an MRI scan soon as they think it may be short term memory loss due to the medication I am on.

[largesse in reply to Jessicaa19]

Since my daughter has been on meds her memory is shocking so it is quite likely that it is the meds affecting you. Take care xx

[jojo-lianne]

Hi again Jess,

One thing I would ask for if you're having headaches is to be tested for antiphospholipid syndrome (aka Hughes syndrome). It's basically a condition where your blood is naturally thicker than is healthy causing some pretty interesting symptoms!

It's found alongside lupus regularly and comes with its own set of issues. The most common ones are headaches/migraines, miscarriages and blood clots. Sufferers also have fatigue, memory loss, foggy thinking among other things.

It's treated with anticoagulants like asprin, warfarin or heparin and occasionally Planquenil.

The Hughes forum here is another really good one and the charity website is also great.

I'm 'blessed' with this one as well.

Hope you're doing alright

Xx

[veronicasweeten]

I know of someone who has the same symptoms and they were prescribed medication for ADHD and that helped them stay alert. Don't know if that's safe or even an option, but it doesn't hurt to put that option out there