Fed up =

not just tiredness, but awful fatigue

ive been on Orencia and methotrexate injections for 8 months and up until 2 months ago I was feeling good, but as soon as the weather changed ive been plagued with terrible fatigue. im sleeping 14 - 16 hours a day and even when im awake I could just go back to my bed, surely this isn't right ???

I do take a lot of medication for my rheumatoid = Orencia, methotrexate, fentanyl patches ( 200 mcg ), tramadol, co dydramol and amitriptyline.

Also ive been getting "bobbles" on my elbow joints which are hot and throb, is anyone else getting them. The reason im asking is that I cant get in to see my consultant until atleast April (even though im supposed to be seen every 3 months.... it will be 8 months by April ) and no use phoning the rheumatoid nurses, they just don't return your calls.

im sorry for moaning, but im quite worried about these symptoms, my doctor cant help me as he says because the hospital put me on all these medicines, he cant adjust them. im only 44 with 2 young children, but I feel like an 84 year old and I feel im letting the kids down by sleeping all the time.

Thankyou for listening, kind regards, Dee.

13 Replies

  • Hi Dee, I'm sorry you're having such a bad time of it right now and the fatigue is so awful isn't it. I'm 45 and have 3 children and it can be a real struggle, I know I am at the minute.

    Anyway, I'm not a great expert of RA as I've only been diagnosed since last summer. That amount of sleeping does sound a little extreme and the hot bobbles don't sound too good either. Hot always makes me think there's inflammation and if there's inflammation there's definitely something not good happening. But I'm sure others with more experience might be able to advise with this.

    Regarding waiting til April I think there are a couple of things you could try to get some advice or see your consultant earlier if you haven't done these already. Go back to your GP and explain to him what you've said on here and that if he is unable to alter any meds (which is quite understandable cos is it quite specialised) then can he fax your consultant for you and ask for his advice on how to proceed or that you be seen sooner. Then ring the rheumy nurse and leave a message saying that in your in trouble and your GP is faxing a letter up. I tried this and they rang me back within hours and offered me an appointment for that week.

    If your GP won't fax, which would be pretty poor, ring the rheumy nurse line anyway and leave a message. When they don't ring back, ring your consultants secretary and explain to them that you need help and that you're getting no response from the nurse and can she help.

    It isn't acceptable that you're left with no means of getting support or advice for 8 months. You need to make sure you stress this to your GP and the secretary if you end up needing to ring her.

    Lastly, cos I am going on here a bit, but I'm in a bit of a similar boat to you right now ... Please don't feel guilty about your children. It's not your fault and you're doing the best you can. I don't know how old they are, but even younger children will understand that mummy isn't feeling so good. Please don't best yourself up about it, just do the best you can and that will be good enough for them.

    Take care and let us know how you get on. Rx

  • I'm so glad we don't have these nurses I just phone my consultants PA and she has a day book for her and I get an answer within 24 hours if these nurses don't answer keep phoning everyday until they get feed up have you tried calling appts department for cancellations do this everyday. I didn't have much luck with my Gp getting an earlier appt until someone told me while waiting at the clinic. Suppose I'm lucky I can go to see my consultant at the cottage hospital instead of having to go to the big university hospital hope you get something sorted soon. X

  • Hi there I feel so sorry for you, the fatigue is terrible, I too spend a lot of time in bed, maybe when you speak to your specialist ask about your meds, at least two that you are on cause one to be drousy. I wish you all the best and push to speak to his nurse, you cant be left that long.

  • Your GP should at least be able to help with the pain relief, most of them get pretty good at that. It looks to me as if this is what needs tweaking - the fatigue from the inflammation is bad enough without adding to it with sedation from the medication! But if its the inflammation that isn't controlled then be persistent with asking for more help from the rheumy team.

    unfortunately, only by being a nuisance will you get help!

  • The a advice already offered re the long wait for your next appointment is good. It's not acceptable to be waiting so long.

    I just wanted to say that I really sympathise AND empathise. I am 42 with 5 children. As my name on here suggests the constant fatigue is what often gets me the most.

    I try to rest while my younger ones are at school so as have the energy to give them some attention when they're home.

    You can only do your best. I'm sure that they understand that you're not well, even if they don't necessarily show it!

    Hang in there.

  • Hiya. Get the gp to just check your iron levels. I was exactly the same and it turned out the medication was making me anaemic. A good dose of ferrous fumarate has helped a lot. I am not as completely wiped out as I was. Sally x

  • Hello

    You seem to be on a tranche of medications, some can cause fatigue as will RA,

    If you are concerned with your medications especially the DMARD the nurse should talk to you regarding this and also blood tests will need to be taken to check for problems

    Your GP will follow the hospital regarding medications although if you are having problems He should be able to get you a referral

    How often do you have your blood tests, are they taken by GP or the RA nurse

    One thing , I am not a doctor so any advice I give must be taken as that, support


  • Hi dee my advice to you as Ive been in similar situation...is to phone the secretary of the rhemy department and give her some calls to make and to explain your situation she can contact the nurse to phone you...tell her it needs to be sorted and you can't wait until your next app which is months away...be nice but assertive as you dont get anywhere...and another thing my local doctor wrote a letter to my rheumy consultant to make me an earlier appointment....as things needs to be sorted...so someone has to help you out...keep on at them as if you leave it they won't get intouch with you..sending you big hugs let me know how you get on Nicola :-)

  • I'm another one who is tired all the time. I take iron tabs and try to rest in the daytime when the children are at school just so I am in a reasonable state to function when they get home. I think you have to pace yourself if you can. I do also have some times in a week when I am quite full of beans and try to get everything done but I never fully catch up.

  • Thank you everyone for all the advice its so nice knowing that no matter how bad things get, there is always someone out there who will listen and can help. Ive phoned the hospital about being left on my own too long, only to be told that - and I quote " there are plenty of people in the same boat as you, but unfortunately the consultant is leaving the hospital with no replacement as of yet available, so we may have to adjust your dated appointment ", so I might not even get to see the consultant in April !!

    Another thing .....when I go for my appointments at the hospital, im given blank blood test sheets to fill in myself before I go for my 4 weekly blood tests, the nurse gives me about 12 - 15 blood sheets at a time, is this the normal practice ??

    Oh well, at least ive saved a fortune not going to the xmas sales - too busy sleeping xlolx

  • So sorry to hear about your fatigue. I haven't much to add, but the blood results should show if there are deficiencies like iron? I'm wondering too whether you're getting the right kind of sleep? I've read that it's best to only have short naps of about 20 mins in the day. But you might not be getting good quality of sleep at night. I have this snoring bear in my bed and when he doesn't snore I always feel much better. Hope you can get some help

  • The "bobbles" on your elbows interest me, I have those, not hot but painful if I put pressure on them.

    The blood sheets, totally blank? As I get those to make sure they check the right things, I think xx good luck xx

  • sorry to hear about your fatigue ive had ra for 12 years and know the feeling well. your not moaning and unless someone has this sympton they have no idea. try the RA nurses again if you keep at them that sometimes works . good luck and hope you get it sorted

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