I have taken MTX now for 5 weeks following the first diagnosis. I am so tired all the time.I have always very house proud, and now I don't seem to be able to do what I used to do and I can see my house not as clean and tidy as it once was. I try to rest but I get frustrated when I see what needs doing. It is making me more stressed than I already am. My husband can't help as I have posted before he has dementia. I am finding it hard to see to all his needs as well now.i do have a career coming in in the morning to get him up so that is a god send. It would be nice for me to just sit on the sofa and have a cup of tea made for me. Sorry for the rant but feeling a bit down this morning. It is a nice day today and would love to go out amongst the trees but I can't. Hubby not fit enough to take out and I can't leave him. Oh ther I go again moaning when I know some of you are a lot worse than me ( shame on me )
Can anyone please tell me if it gets better as time goes on, I am thinking that I will have to stop taking MTX as I am struggling.
Have a good day everyone.
Written by
Diddydriver
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I'm sorry you're having such a tough time, Diddydriver. It sounds like you could do with some help.
Are you in the UK? If so, there is some available that you can find and arrange for yourself, using websites like this: connecttosupport.org/s4s/ If you're in the UK but not in these particular areas, Google "shop for support" plus the name of your nearest town/city/local authority, and you should find something similar.
Also, if you're in the UK, there was a new piece of legislation introduced in April last year called the Care Act, which gives you new rights as your husband's carer, as well as rights yourself because you have a long term condition. You are entitled to an assessment of your support needs, and the local authority must help you find the support you need. You may or may not get financial help with these support costs, depending on your income. Phone up your local council adult services' department and say you'd like a 'combined assessment' because you have a long term condition and are a carer for your husband with dementia.
If you don't want to do this, then it still might be worth finding and using a cleaner, even if it's just for an hour or two a week, to help with the housework you can't do yourself. Most of us would prefer to do our own housework, but sometimes we have to recognise our limits... (That's a message for myself too, because I've realised how long it is since I've washed my kitchen floor and skirting boards...!)
I'm sorry that you are going through this dd and I feel that you have every right to feel sorry for yourself. It's difficult enough to look after ourselves without caring for a loved one with great needs. Please don't be afraid of asking for help. If you don't take care of yourself, how are you going to manage looking after others?
I hope you get the support that you deserve. Good luck x
I know just how you feel l was my husbands carer for 14 years and it can take its towel and to have a condition to deal with of your own health can seem never ending struggle I am living the mtx nightmare at the moment and I will speek to the nurse tomorrow hope you find the help you need soon you are among friends here
Since you are only 5 weeks into MTX, it won't be working yet. The tiredness could be a side effect or it could be the disease itself. Tiredness is a huge part of it for a lot of people. It's possible that if this is a side effect it will lessen with time.
Please speak to your GP/social work dept about assessment for yourself and your husband. They might be able to arrange some respite care or day centre attendance for your husband if you think that would help. If your needs have been fully registered it will be easier and much quicker for you to access extra help if you have a flare up or if your husband's needs change.
Cut yourself a bit of slack when it comes to the cleaning and 'what needs doing'. Looking after you is important! Dusty skirtings or whatever never did anyone any harm.
I'm sorry but feel strongly that after 5 weeks on MTX its too soon to give up on it. And in fact it may be the RA that is causing the fatigue which is fairly standard rather than the MTX. Give the MTX at least a couple of months as its said to be 8-12 weeks before it gets fully going in the system. Please talk to your GP before stopping as it may be that you also have B12 definancy and need meds for that. Who knows? but more tests might be needed before a definite cause can be found. Honestly its too soon and I feel for you, but MTX is a really good medication for lots of us and so don't give it up.
Do speak to your rheumy nurse as they may be able to give you something else to tide you over until the MTX has a chance to work. Generally they have more control over the RA meds than GPs.
Unfortunately this disease does bring with it a fair amount of compromise and can take some time to get the right med combination to suit you. Farm
As usual after reading your replies you have given me hope to carry on. When I am feeling cheesed off with my lot in life you all rally round and give me the lift that I need. I am not really as depressed as this reads just very fed up. Thankyou everyone I will take heed of what you have said. Hubby in bed now, feet up listening to the radio and finely relaxing. Sleep well everyone.
Hi I'm sure it's the RA that causes the tiredness when it's active Ive been on mtx for 20 years now and still get the days when all you want to do is sleep I'm sorry I'm not helping much have you looked in to respite for your husband just a couple of days so you can relax and recharge yourself it might be possible take care X Dawn
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