Does anyone else feel like this???

EmmaEJS

Hello there I am new to this forum but hope to make use of it in the future. I was diagnosed with RA in 2007. I am not in a wheelchair and have lead a fairly active life until recently. I have suffer with pain in my hands, elbows, shoulders. My feet and knees suffer when I have used them too much. The thing is I have been feeling excessively tired recently and feel like a leper because no-one around me understands what its like to be like this, unless you have RA yourself you feel quite alone and as if your just being lazy. I am a student nurse (mature student) and have been on placement recently in the community. I have spent the whole summer coming home from work and falling asleep with no enthusiasm for anything. I have 2 chilldren who have not been anywhere or done anything this summer due to my fatigue. Does anyone else have similar experiences like this??? I just want to get back to feeling more like a person!

tillytop

Hello EmmaEJS and welcome to the forum!

First, just to reassure you that you are absolutely not alone in struggling with RA fatigue and this is a subject that comes up on the forum often. I have to say that I have huge admiration for you managing a demanding nursing role whilst you are struggling so much.

I know from experience how awful the fatigue associated with RA can be and I can identify completely with the feeling that you are "lazy" and feeling that those around you don't understand. When I was first diagnosed with RA I remember the consultant asking me about fatigue and, at that time I didn't understand what he was talking about - but the first time it hit me I began to realise why he said that some people felt it was more debilitating than the pain and stiffness.

What meds you are taking and how active is your RA at the moment? I ask this because the fatigue may be an indication that a review of your meds is needed - I have found that when my RA is under better control the fatigue eases hugely. Do you have a rheumatology appointment in the pipeline?

Have you ever heard of "The Spoon Theory"? If not, try googling it. It is a brilliant explanation of the relentless fatigue which can accompany RA and other chronic conditions and you may find it helpful to share with those around you to help them to understand.

The forum seems pretty quiet today but I know you will get some more replies in due course - and hopefully you will begin to feel less alone with things.

We are a friendly, knowledgeable bunch and you will be made very welcome.

Thinking of you.

Tilly xxx

Paulinecarza

Hello Emma - I only joined the forum myself last week and have found it to be a huge support.

My RA sounds like yours in that I can still get around fine but also like you I struggle with the fatigue (and was even wondering if it was all in my mind!).

Some meds make the fatigue feel much worse so its worth checking that out too.

Pauline x

DebraKelly

I too have RA and suffer from a lot of fagitue.

I have never read the spoon theory, but will have a look.

Its a very hard thing to learn to deal with.

fowls48

Hi Emma


I have RA i get very tired , and have even been known to go and have a sleep during work times .Yes i find it very frustrating when people do not listen to the other things we go through , i feel like sloshing them about the head .You are not your your own .I just take one day at a time now its all i can do .
Take care
Fowls xx

dreamdaisy

Can anyone remind me what alert feels like? Awake? Wossat mean? Restful sleep? I wake up and just want to doze off again. I don't even have RA, just PsA (another inflammatory type). It's part and parcel of the arthritis package and the only way to minimise it is to pace oneself. The days of doing what I want, how I want and for how long I want are long gone. Everything now is judged and paced, with frequent rest breaks in between. I find that works for me - plus stopping when I think I can do more. It's taken me years to learn that though. DD


PS I forgot to say 'Hello' - I'm in a bit of a pother at the moment, please forgive me.

kentishlady

Hi everyone. I have OA - my back is badly affected and I find it so frustrating not being able to do all the things I want to do because of the constant pain. It seems that almost everything I do affects it - walking is a real struggle but normal everyday things like housework also cause me great problems too. I also have found this forum to be such a help and support as everyone actually understands what you are experiencing (if only other people could it would make life so much easier). I try and go out as much as I can but always have to plan my route out so that I know there are places where I can sit down and rest. If the pain would ease I would be able to walk further and exercise more. I notice that some of you with RA mention that you find you get tired very easily. I do too - some days more than others - and wonder if others with OA find the same. By the way DD, have been thinking of you and wondering how you are getting on.
It really does help to know there are others on the forum experiencing the same difficulties and that you are not alone. Beryl (Kentish Lady)

EmmaEJS

Thank you all so much for your support and advice I cannot tell you how much of a difference it has made to me knowing that people understand. Fatigue is somethimes the worst part as people just dont understand it. I had been coming home from work and just sleeping or going for a 'quick' nap and waking hours later in exactly the same position and then sleeping all night as well!

I am lucky my knees and feet are not so bad at the moment but my hands shoulders, elbows and neck/back are awful! I admire all of your courage to carry on with things and pacing myself is going to be something I will just have to get used to.

I take methatrexate 15mg a week my bloods are not awful but they are not great either. My CRP is only 17 but it was 107 in 2007! But all my inflamatory markers are all raised I also have swollen glands which is a bit strange! I dont have a Rheumatologist at the moment working on that one its a long story!

I am sorry to read that sleep deprivation effects you I cant imagine what it would be like to go without sleep. I used to have pain in the early days at night and sometimes now but I sleep well as I am sooo tired!

I will check out the Spoon theory and thank you all for your support once again.

Emma

tillytop

Hello again Emma

You are so welcome! We're pretty good at that on here because we all find ourselves in a similar position.

It does sound as if your RA isn't under brilliant control at the mo and that could be why your fatigue is so bad at the moment. Have you seen a GP about the swollen glands though? Just asking because if you do have an infection that could well be contributing to the fatigue too.

I hope you can find a rheumatologist soon Emma - really does sound as if you need one. You say your CRP is "only" 17 (which, granted is a whole lot better than 107 - yikes!) but even so, it is, as you say, an indication that things are not going well inflammation wise.

Glad that you are going to check out the "spoon theory" though. I re-read it after I had posted on your thread this afternoon and it is really very good.

Thinking of you.

Tilly xxx

barbara12

Hello Emma and a warm welcome to the forum
just talking to people that understand some of what you are going through can make such a difference, and there are many mums on here going through the same .
So hopefully some of them well be along very soon..
You take care xx

bubbadog

Hi Emma, As been said your not alone! Recently I've had a flu bug and due to very low immune system I've been really fatigued which has caused me to fall asleep while watching telly or talking to the OH (that is embarassing!) .

As was talked about in another topic, I said you have to learn to listen to your body, it will tell you when you've done to much! (by pain/flare up) So you need to learn to listen for your body to say stop! I'm tired. I know it sounds crazy but it works.

Everyone takes different meds so that's something not to tackle, but as for not having a Rheumatologist, I think you should talk to your G.P and see if they will refer you to one. I didn't welcome you to the forum offically! So, Welcome to Arthritis Care Forum Emma!

EmmaEJS

Thanks all again for the warm welcome!

I have read the spoon theory and have passed it on to friends who are in a similar situation everyone finds it amazingly helpful! Thank you Tilly good call.

I have an appt with the dr next week and have contacted the ra dept at the hospital they claim I missed an appt so they discharged me! I cancelled an appt but obviously they dont believe me! Ironically I didn't feel well enough to go! If they want I can provide proof from my phone bill that I telephoned them to cancel, if it goes that far.

I have learnt a valuable lesson not to take my ra for granted in the future and will just have to take more care of myself. This is suprisingly calming and I laughed a great deal more than I have done in ages with the children last night.

Thank you all.

merri

Hi and welcome to the forum Unfortunately, yes I feel like this, pretty much all of the time but then again I don't think my RA is under control at the moment.

I've found pacing really helps and not trying to force myself to do too much.

tillytop

Hello again Emma

So glad you found the Spoon Theory and that you found it helpful.

I am also really pleased that you are making progress with the rheumatology appt and that hopefully you will be able to get some advice and a review of your meds. Re the rheumatology dept saying you had missed an appt - I can't believe they just discharged you! Not so long ago I received a copy of a letter which had been sent by the rheumatologist to my GP saying "how disappointed" they were that I hadn't turned up for my appointment. I didn't even HAVE an appointment and, coincidentally had just arranged an appointment for the following week! I was so cross that this phantom "non-attendance" letter was going to be put on my records! But at least they didn't try to discharge me!

I'm pleased you are feeling happier about things Emma and good luck with GP next week.

Tilly xxx

chris164

Hi Emma,

I don't have R.A, I have O.A, However I am replying because I too am a Nurse.
I just wanted to say how I do feel for you, we are on our feet all day, and having to be polite and sympathetic to patients, when sometimes it feels like YOu are the one who needs the TLC. Plus, you are a student nurse, so theres all those assignments etc. i admire you doing your training when you are feeling like this.

Chris

RitaW

Hi Emma,I too have RA and suffer with terrible fatigue.My husband is my full time carer and has to do everything around the house as I am in too much pain and fatigue.I find the fatigue harder to cope with than the pain as I used to be very active and now find myself in hibernation most of the time.It is very difficult to explain the fatigue to others who do not suffer from it and it really helps to read about others experiences and know that they understand exactly how it feels.Please know that you're not alone and we understand how you're feeling.xx

Starburst

Hello Emma,

Welcome and glad you found this great place. As you can see, everyone is wonderfully supportive.

I could have written your post myself! I'm a youngish (24) mature social work student who's just started placement and I'm finding the fatigue from my RA very tough to cope with.

It's good you got back in touch with the hospital and hopefully it can get sorted out so you can speak to a medical professional. If you have a lot of active inflammation, that will be contributing to the fatigue so it might be a case of adjusting medication. Not that I'm suggesting it will cure the fatigue but it may damped down some symptoms.

Most areas have a pain and fatigue clinic which may be able to offer you some support. I see a physio who specialises in rheumatology and she helps me work through techniques such as; pacing myself. The sessions have really helped me learn to do things like relax in bed, reading a book without actually needing to crash out and sleep the hours away.

I imagine it's extra hard for you as you have 2 children, do you get much support with them?

We're here if you need us. x

6im2laya

Yeah just to say I admire you too doing your nurse training. A hard hard course and having to do placements that have been set up for you rather than what you chose. I have o/a and finished my nursing 4 years ago although I was a carer for 20 years. I had a 3 and 5 yr old at the time and I used to go on placement hoping I would never have to go with resus team coz couldn't have run that far it at all. Advice I could give you is let all your placements know u have r/a and some days you may not be yourself. I used to nearly cry at my breaks at lunch coz was sooooo sleepy and could have lay on the floor for an hour for a wee nap. And when you finish your training don't do 12 hr shifts try and keep to the 7 hrs. So much kinder to your body. If you ever want to moan about your training and pain ill listen coz I was there... U look very normal to everyone else and not their fault but a lot of people see arthritis as an old persons think so have no idea u may be suffering inside. Take care Wendy. Xx