Extreme fatigue

[immyapple]

Hi there everyone my name is Sharon and I am from London so pleased I have found this site I've been feeling so alone trying to cope with this condition

I think my psoriasis started around about nine years ago when I was pregnant with my second daughter it started on my elbows and made its way down my forearms I also had it on my hands and at the back of my ear quite bad. Quite surprisingly to myself my daughter was also born with psoriasis on her back and on her chest luckily as she got older the psoriasis subsided somewhat it still makes its appearance at times

I would have bad flareups where I just want itch my skin all the time but I just got on with life as you do.

Around three years ago I started to get terrible pain in the coccyx area of my back standing from a sitting position was excruciatingly painful I also was getting extreme stiffness in my neck pain in my fingers pain in my toes pain on the soles of my feet painful hips and just feeling really unwell

Again probably like so many of you I just put it down to getting older I also suffer with osteoarthritis quite bad which I thought that was the problem but I was struggling with

The problem I suffer with the most is extreme fatigue. It has really affected my day-to-day living being a pretty much single parent and looking after my two girlsI get them up for school in the morning make packed lunch and driving them to school I get back from the school run I tried to start doing my daily chores and I have the most extreme urge the need to sleep like someone's give me the sleeping tablet I then sleep for about 5 hours straight

The Dr s have put me on methotrexate over the past 4 months it's not worked at all for me so they are going to try methotrexate by injection to see if that helps

Does anyone else suffer with extreme fatigue ? To this extent I am for ever playing catch up

Always feeling guilty that I have not got much done

I have explained to the rheumatologist with regards to my severe fatigue they handed me a pamphlet on fatigue which wasn't that helpful is there anything they can give me so I feel so tired all the time.

Any advice would be gratefully received

[Hidden]

Firstly hello and welcome! Unfortunately the fatigue is a huge part of this disease that we suffer with and you have to learn to pace yourself. It's easier said than done, I know, and extremely hard for you wth school age children and being a single parent to boot. I take my hat off to you for coping as you do.

Not sure if this will help you but my story at present us my hubby s in hospital and I'm having to cope. The way I've got round it is this each night I put the washing in the machine in readiness for morning switch on. I switch it on first thing when I get up. As soon as I get home any bins that need emptying I do it there and then. Those two things I do each day, plus swizz bleach down the toilet pan before leaving the house and on return I flush so it's cleaning whilst m out. Then look at what else that needs doing and see if I can leave or has to be done. I make time to have a snooze during the day and set the alarm to wake me.

Take a look at your day and see if you can do something similar, write down what you have to do and also when your at your worst and when your at your best. But most important of all are rest when you can and alarms on phone.

[immyapple in reply to Hidden]

Thanks for your reply Georje

I tried to be as organised as possible but as you know there's not enough hours in the day especially when you sleep half of them away lol

I do try to set myself a little tick lists to say how much I can get done.

sometimes I can get all done and sometimes not which means tasks pile up.

I set myself 20 mins goals ie washing up and putting away, even that can be really Hard especially when my psoriasis on my hands have flared up its painful I cannot use marigolds

As they make my hands itch even more.

I was speaking to an old friend of mine and she said I should try re-evaluate my household tasks ? She couldn't understand why I feel the need that I have to cook my children home cooked meals every night rather than packet for convenience food. I told her if I'm cooking a shepherds pie I make enough for two and put one in the freezer so on the days I do feel really poorly I can just get it out of the freezer. She does have a point on something's as I feel the need to iron everything and she is the opposite she irons nothing and sometimes it shows lol

I suppose it's the way I was brought up anyway thank you for advice.

[Hidden]

Hi there, I'm glad you found us too. Psoriatic Arthritis can be a confusing disease and it really helps to share experiences with others in the same boat.

My story is that, in retrospect, I can see that I had PsA for some time, possibly 10 years or more, before I was diagnosed. Towards the end of that time I had 'classic' symptoms such as very swollen joints which the doctors still managed to miss. By the time I got diagnosed I was really ill with crushing fatigue, chills (uncontrollable shivering), extreme stiffness and pain, unable to walk etc. etc. etc.

When I look back it seems to me that the PsA kind of built up a head of steam and then blew a gasket! Anyway, I wish I'd been diagnosed earlier. I'm telling you all this because your story sounds similar. The main differences are that I did not have any spinal involvement, nor do I have children to care for. Even so, I suffered a lot in those early days and experienced a lot of guilt, just like you say, because I couldn't be the person I wanted to be. What I now know is that these early days are, very often, by far the worst.

I'm in danger of going on and on and on! So I'll try to sum up the things I wish someone had told me back in 2012 when I too seemed to be taking invisible sleeping tablets and was wondering what the hell was going on.

Firstly, you may need aggressive treatment with biologics such as Humira or Enbrel. By 'aggressive' I mean towards the disease, not necessarily tough on the body generally. Biologics are game changers for many of us with PsA. Some rheumatologists can drag their feet so you need a good one & it's your right to see whoever you choose. But to start with, why not ask your rheumy where they see treatment going, what the long-term plan is. Mtx is usually the starting point but unless it helps considerably you should be moving on through a treatment plan before too long.

Secondly, the fatigue isn't your fault. I guess you know that. It's a typical PsA symptom. For me it was also the first symptom to start improving. You have to give in to some extent and again, you need the best possible treatment to tackle it. One thing that you can do is to exercise ... don't laugh! Some regular exercise does help knock out a bit of the tiredness and is great for joints too. Just walking regularly, stretching, swimming if possible, will all help over time.

Thirdly, I think I've said this but it's worth emphasising: this is very likely the worst stage. It's all about getting through it without self-blame or losing hope. One step at a time. Understanding the disease as much as possible and having a rheumy you trust will help. Be kind to yourself but do the right things: a bit of exercise, eating as well as possible, drinking plenty of water (that's vital when on Mtx) etc.

Wishing you luck & hope to hear more from you.

[Hidden]

Hello

One of the contraindications for PSA is an overactive immune system and that in turn attacks your joints etc, the causes the Fatigue.

Biologics and DMARD TYPE medications slow down the immune system and that slows down the damage caused to joints and skin. Psoriasis of the skin is again caused by body renewing skin to fast, hence the patches of flaking skin. There are other types of medication that can be give such as light and various creams and ointments.

BOB

[KLE56]

Hello, I have suffered with psoriasis since I was 13yrs ( I am 60 this yr) I took methotrexate although it helped my psoriasis it didn't help with psoriatic arthritis so was taken off it, at the moment my skin is bad very flaky and itchy but like you I suffer from extreme fatigue and also I have problems sleeping at night time so I get sleep whenever I can. I sympathise with you and your problems especially if you have a family to look after keep strong and keep smiling Karen

[Hidden in reply to KLE56]

Hello KLE

I sympathise also I was unable to have children because of many of the medications, I started showing PSA at thirty and am still with it at sixty five.

I stopped using all the creams and ointments a while ago and now use good strong moisturisers, many contain honey in bath and shower.

It seems to assist in thickening the skin instead of thinning it

Although I still suffer from the scaring, it is the elbows that seem the worse to treat

The tiredness is caused by the overactive immune system, that damages the joints and makes the skin cycle shorter

BOB