New to forum

Cookie83

I am new to this forum – I hope this doesn’t come across as too much of a moan on my first visit – just got back from my monthly blood tests and feeling a bit down.

Anyway, Hi… I am 28years old, a youth worker and was diagnosed with RA in 2010. I have been on 15mg Methotrexate since Jan 2011. I was in so much pain that first year and it came on so quickly, thankfully most of the pain has gone since being on the Methotrexate and I generally now just get aches and pains, the odd flare ups and mornings are difficult. The part of all this I am finding difficult to cope with is being tired and getting colds and bugs that I can’t shift.

When I am at work, I work hard and I’m fairly active – though I am more careful than I was before all this happened. When I am ok I get myself into the routine of going to the gym and I feel normal and then I get a cold or even just my period I am wiped out. But I go to the doctors and they say I am fine – “just rest”. But how can I be fine when I feel so ill and how can I rest when I have to go to work? I can only self-certify for a week at a time and all I can say when I get back is that I had a cold or a bug.

I hate having to have the odd day off here and there. I work in quite a small team and they are supportive and know I have RA but its more that I feel like a bit of fake, that I can’t come back with a doctor’s note to say “yes I was ill and here is my proof”.

Also my partner works really hard running a charity and I feel I should be doing more in our home but I just don’t have the energy and we’ve talked about it a lot and she knows how I feel and that I want to do more but sometimes I can’t. Mostly this is about how I feel about myself, I’m 28 I don’t want this. I fell asleep on new year’s eve before midnight watching Joules Holland – and my partner had to wake me up at one minute to midnight – now that’s just sad!

I’ve read some posts that say that not everything is the arthritis and if it is something else making me so tired I want to know what I can do. Do other people struggle with the tiredness and how do you describe this to a GP? I just feel like I’ve a got a flashing hypochondriac warning on my doctor’s computer screen now.

dreamdaisy

Hi cookie83, it's nice to meet you but I am sorry you have had to find us. On the plus side the meth is achieving something and that is a good thing, but it may not be solving everything, or the dose may not be quite high enough to fully control matters. Is this the only med you take? Arthritis itself is tiring: with the auto-immune based ones our bodies are busy attacking themselves (for want of anything better to do) and we try to subdue that with very powerful drugs: it's no wonder we feel fatigued so often. I am 15 years into my dealings with this pest and I have watched my little business (I'm a self-employed tutor) steadily shrink, I have become less and less able to do the things I used but I AM gettting better at managing my lifestyle (gives a hollow laugh - lifestyle? That's a bloody grand name for it! ) New Year? I was in bed by 10pm because I can't stay up any more, not for something as artificial as that.

It's all about learning to manage one's dwindling energy resources as best one can to help eke them out a little longer. It is a total PIG for someone as young as you, not so bad for an agéd hag like me, but yes, it still grates from time to time. I am not sure that your GP is the best-placed to understand this, mine is happy to leave all my Psoriatic A stuff to the hospital whilst she deals with the OA, but all my rheumatologist suggests is rest because that is really the only option. Do you continue with the meth whilst being affected by a bug? I was always told to stop the meth so that the immune system could fire up a little to help fight the infection - I find that works.

It may be worth having a frank discussion with work about RA and what it means: AC produce some excellent and informative leaflets, many of those 'outside' our arthritic world have little idea about what arthritis actually IS, let alone the fact that someone as young as you can get it. You may find that once they are more aware of how you are being affected some changes could be made to your schedule etc: I know I am floating some very vague and possibly errroneous ideas here, being self-employed I am very lucky in that my boss totally gets what's going on with me and does understand! Meanwhile, keep talking to us, we know what it is like and we understand that arthritis affects not only us but those around us too. I wish you well. DD

stickywicket

I very much doubt your doc has you down as a hypochondriac, Cookie83, more like someone just struggling to deal with RA and remain as ‘normal’ as possible.

You are very new to all this so your life will have changed a lot very quickly. Unfortunately, RA does bring on fatigue. Meth can bring on fatigue too. Meth makes you more susceptible to infections. You are a youth worker, a pretty energetic job I would think, in which you mix with lots of people who bring in lots of colds, bugs etc. It’s not easy.

My gut feeling, from what you’ve written, is that you have accepted the fact of RA but that you are finding it hard to accept the reality. The reality is that things have changed. You can often manage to live your old life but it’s difficult now. You sound to have a good partner and good work colleagues and are a conscientious person yourself.

Don’t beat yourself up about what you can’t do, Cookie83, and, when you do get an infection, be ready to hit it with all you’ve got – rest, fruit juices, healthy food, antibiotics if necessary – as quickly as possible.
I'm sorry, I can't offer any advice about the work situation but I hope some will come along soon who can help.

sulkycat

Hi,
A friend of mine who has had RA longer than me also suffers from terrible tiredness. When I am struggling she always reminds me that a flare up affects much more than 'just' the affected joints, and that it can feel flu-like, hitting the whole body.
My Dr has repeatedly told me not to fight it and to listen to my body and rest. It's harder to do than it seems, but I am definitely getting better at letting myself do nothing when I need to.

I can't work anymore (not at the moment anyway) so I am not at all surprised you are tired as you are still working. Forgive the clumsy sentence, I have just woken after a couple of hours snooze on the settee!

Best of luck - it's a real battle, one I am just beginning compared to many here. And do use the lovely folk on this forum, they are a godsend.

resusjan

Hi there,

Like the rest of us on here, I know where you're coming from. I was diagnosed with RA in 2011 and have found the fatigue so difficult to deal with. You go to bed tired and wake up tired. I too, was in bed before midnight on new years eve (on my own as my husband is fed up of me constantly moving around to get comfortable).

I work full time, as a nurse and find it really hard to cope sometimes. As usual, the wards are short staffed and because my illness isn't particularly visible to others I too, feel like a fraud.

I never used to go to my GP's but seem to be in there constantly now (along with the RA, have also got hypothyroid and just before christmas diagnosed with pernicious anaemia). For me, the key has been going to the same GP as much as possible - I managed to find one who is really supportive and often rings me at work or home to let me know my blood results etc.

I think the tiredness has got worse since starting the methotrexate and sulfasalasine (but probably mostly due to the pernicious anaemia) so I'm not sure if its the tablets or the condition. I find that if I come home from work, have a 30min power nap, then I'm able to enjoy a bit of the evening. But, I must admit, I've given into it a bit and am normally in bed by 8.30pm.

Take it easy, listen to the gentle nudges your body is giving you and try to rest when you can (I know, not that easy).

WIth regards to describing it to your GP - find one you get on well with and stick with them, I find it much easier seeing the same one as I don't have to explain everything over and over again.

Good luck, take care xx

bubbadog

Hi Cookie, 1st of all welcome to the forum, Getting any bug will wipe you out as your immune system will be low from having R.A and taking meds. And as for your menstral cycle as you know that wipes any well person out full stop! (I expect I don't have periods due to having hystroectomy 10yrs ago going through menopause now and on HRT!) I'm 38yrs old and feel my life has flown by me and I missed out on all the things I should have enjoyed as a young adult due to having Osteo-porosis, if I thought about it I would be in a big hole of being depressed so I think about what I can do and do that as best as I can.
The tiredness will be caused by part meds and part R.A. I asked my G.P she said that's what it was. I just listen to my body and if it's tired I just rest as much as I can, otherwise you could end up having a 'flare up' and I hate having them!
Your doctor should suport you, I know how you feel having to ask your husband to do jobs for you, we did have alittle row when I surggested getting a house cleaner but I made him agree and now he says she really is a big help. But whenever I say I feel awful him having to do so much for me, he says it isn't a chore because he loves me.
Hope you enjoy the forum, it's a great site and we surport and help each other. If you have any questions don't hesitate to put them on the forum or you can P.M (privete message) me or any other members if you want.

frogmorton

Hey Cookie

nice to meet you

sorry about this bloomin stuff though :roll:

I think feeling so very tired isn't right at all.....the MTX sounds to be being successful pretty well as far as pain is concerned, but other report other medications help more with the fatigue part.

I believe you have every right to tell your doctors rheumatologists etc, just how exhausted you are. AND take your OH with you to support what you are saying.

On another matter...if you earn enough to - could you pay for a couple of hours cleaning at home to enable you and your partner to enjoy your time at home more??? Of course your OH might not want this but a conversation where you say how guilty you feel could help a bit anyway.

Love

Toni xxx

skezier

Hi Cookie,

A welcome from me as well.

It gets hard, it really can grind you down but all of it passes and you do get times when you feel normal for many years.... that I can promise.

The fatigue does come with RA as well as other things and its hideous and hits like a blanket with me, though I don;t have ra I have pa and a hoist of other things that carry fatigue.

If you are worried you have something else as well its worth talking to either your doc, rumo or rumo nurse about your fears.

Its so good that you and your partner are able to talk about it, and hopefully it will get easier cus what they mean is your bloods are fine but they don;t always understand that doesn't mean we feel fine.

They tell me to listen to my body.... I kinda think it has nothing to say :roll: that's my way of dealing with it to be honest. We all do find a way that works for us.

If you need time off you might find a double appointment with the doc and be honest about how you feel could help? That way they might give you a sick note. I am lucky cus I am self employed... I wouldn't employ my self if that makes sense?

I think being totally honest with the gp and also with work (they might be able to lighten your work load some how?)

I so hope you can fine a way to make things a bit easier and maybe a couple of weeks off work to rest up could help?

Cookie the one thing I do know is it does get easier. Hang in there and nice to met you. Cris x

LolaCrayola

I think that tiredness from the drugs and from pain can lead to e xhaustion. Maybe see if you can get a referral to the Pain Clinic. I only tidy parts of my house on a daily basis and I had to stop work at Christmas. I nr know how I will feel from day to day.