ouch and yawn

resusjan

Hi everyone,

I'm a relatively new person on here and have only posted once before but found you all supportive.

I have just come on today so I can have a damn good whinge - I think my husband is fed up of hearing it.

I am 42 and was diagnosed with RA about 3 months ago after a long history of joint problems. I work full time as a nurse and am still managing to do this at the moment.

I've been started on Methotrexate 20mg weekly, that funny acid type thing that I can never remember the name of and folic acid. For the past two weeks I've been coming home from work absolutely knackered and having to go straight to bed (don't even eat first), my hands, wrists, elbows and feet are so painful that I feel like crying most of the time. I'm trying really hard not to take time off work as I want to apply for a promotion soon and am worried that this may go against me.

Is it normal to feel so tired all the time? I'm also quite anxious and low in mood (sleepless nights - taking sleeping tablets, palpitations and shortness of breath).

Sometimes I feel that I'm moaning about nothing as I read some of your posts and realise most of you are in far worse pain than me.

Sorry to moan when most of you are far worse off - just needed to get it off my chest.

Take care all of you, hope you're all enjoying the last little bit of summer as much as possible.

Love and kisses
Jan xx

frogmorton

Hi Jan

I am sorry you are feeling so rough at the mo. Husbands do probably get sick of hearing us moan....another reason why this forum is so good.

I don't know how long you have been on the MTX but it does take a while as you'll know. IF It has been the three months at that level it could be worth seeing the rheumy nusre for review???? I reckon your RA is not well-controlled.

the exhaustion is so much part of it and maybe they will add something else for you to your cocktail???

the other worry is the breathlessness...if l were you l would have to just to be on the safe side check it out.

I totally get your work worries....l would feel the same. Your career is part of your identity isn't it?

Love

Toni xx

resusjan

Thanks Toni,

I have been on methotrexate since diagnosis and they have been increasing the dose every 2 weeks but was told it would only be to a maximum of 20mgs. Not sure what they'll do if no better then.

Yep, I'm a bit worried about the breathlessness. I did have a chest Xray before being started on Mtx which I assume was ok. I'm not sure if its psychological though (it almost feels like a panic attack), I do get chest pain at the same time but don't think thats anything sinister. I've got a GP appointment on 12th September so will discuss it all with her.

Thanks for your help and support
Jan

valval

welcome exhaustion and arther do go hand in hand but you do need to eat. think you need to get meds checked good luck val

resusjan

Thanks Val,

Maybe I'll give the rheumatology nurse a call tomorrow (they never mentioned the exhaustion - wasn't expecting that).

On the plus side, I recently had an exam to sit through (doing a masters in advanced clinical practice). For this section we were individually questioned for 30 minutes by a GP on a frequently seen medical condition. I thought I was going to laugh out load when he decided to quiz me on Rheumatoid Arthritis - signs and symptoms, diagnosis and treatment options. Funnily enough, I was able to answer all his questions quite easily and even managed to tell him some stuff he didn't know. I got 92% for that one and passed the first year! Hahaha, gotta have some benefits from having this!

nanasue

Hi Jan,
Nice to meet you. I agree husbands (and family) do get fed up listening to us, it's because they don't really understand how bad it can be, evn though my husband has ankylosing spondylitis and OA in his right knee, he still can't get that feeling of being in pain all over and all the other stuff that comes with it, I have asthma (which I never had before) and bronchiectasis and now I have 2cataracts that need operating on. I hate to be a killjoy but even though you are only 42 (I'm 57) you need to face up to the fact that eventually you might not be able to work full time ( or at all) depending on how your illness goes. Some people work full time but really struggle it all depends on what you do and nursing is hard work. I was diagnosed 6 years ago and haven't worked since ( and for the previous few months). I used to be a complimentary therapist doing massage, indian head massage and aromatherapy, it was a big blow as I'd worked hard and done well in my exams to get there and I'd only been doing it for 18 months. I know nursing is a vocation but if you work too hard you'll just make your illness worse and it could even progress quicker. I can understand it will be
hard for you but YOUR health is the most important.

Sue x

Ankyspond

Hi

Don't apologise for moaning we all do that at some time.

Think you need to get your breathing checked out but the Meth can take six months to work to be honest. I have ankylosing spondilitis and its horrendous and like you the family get up of hearing me so I tend to bottle it up and then vent it on here. I hope you feel better soon and you make the call to get checked up in the monring. xx

julie47

Hi Jan

Just want to send you a hug (((()))) and hope the methotrexate starts to do its job soon.

Take care from a fellow sleepy
juliepf x

dreamdaisy

The tiredness is part and parcel of active inflammatory arthritis, how long have you been on the meth? Meth can also have tiredness as a side effect. The FA is to be taken one or two days after the meth, I am on one tablet of that per week, are you the same? What's the other funny-named acid thingy?

If you are still relatively new to the meds then it may take a while for them to get into your system, I was always told between 2-12 weeks before seeing a difference (that goes for all of them). I have slept for England during the past week or so thanks to a PA flare, it is debillitating and if you are still working full-time too well, hats off to you girl, but try to build in as much rest time as you can during the day (yup, I know, impossible). Don't think that you are going to have to stop working in the near future, that may well not be the case at all: let's get the right combination of meds in place first, yes? I hope you are feeling better today. DD

frogmorton

Could be tranexamic acid?? an anti-inflammatory????

Just a thought DD?

I think l am able to do panic attacks as we Resuss....but just to be on the safe side???

the total wiped out exhaustion is the arthritis for sure :sad:

Love

Toni xx

stickywicket

You are not ‘moaning about nothing’, Jan. You are in a lot of pain and knackered and trying to live as if you weren’t.

I’m afraid the others are right. This is par for the course but may well change dramatically once the meth kicks in. If the meth kicks in. We’re all different & need and tolerate different meds. It works for me but I’d to go up to 22.5 first. I’m now back to 15. However, it’s probably worth getting in touch with your rheumatology nurse because breathlessness can be meth-related.

Hope they can sort something out for you.

resusjan

Thank you so much for your comments everyone, I really appreciate it. I am seeing the rheumatology nurse on Monday so hopefully she will be able to help me out.

Hope you all have a good weekend
Jan xx

resusjan

DD - thanks for your comment regarding work, I was kind of panicking a bit last night as there is no way I could survive financially without my full time pay. I do appreciate the health comes first but, seriously, I would have to sell my house to pay off the mortgage etc if I didn't work. I've looked at benefits and there is absolutely no way I could survive on that. I've got 2 children (one already at university and one going next year). My employers are being very supportive and I think they will try to accomodate me as much as possible when the time comes with moving me to less strenuous work.

Thanks again, you've put my mind at rest

Jan xx

hileena111

Hi Jan,
Our husbands do get fed up with us no matter how supportive they are...they havent got it and they dont understand. So come on here and moan anytime....we all have some kind of arthur and can understand.
I cant help you with the medication....I've got oA not RA and medication is completely different. I think you are fantastic being able to keep on working full time.
Tiredness goes with it......even with the OA.
Good luck with your apointment on Monday...let us know what happens.
As for being in less pain than the rest of us that is rubbish.....pain is pain is pain.
It all deserves to be treated the same way....never think that you shouldnt complain because you arent in as much pain {or think you aren't} as other
Take Care
Love
Hileena

madwestie

Jan never be sorry for posting we all need a moan sometimes.
I have had ra for 4years now I am on 25mg of mtx but it did take a while for it to kick in and to build up to the right amount.
I still work full-time like you I cannot afford not too (albeit on a computer from home) but I do an engineering job and sbometimes have to work 12 hour days but i have found ways to cope and work round things and you will do this given time. Everything is very new to you at the moment and you will find ways to cope like DD says try if you can to find time to rest during the day even if it is only for a short while and try not to over do it at home ( we all struggle with this one not overdoing it is the hardest )
I do agree the tiredness is the worst thing but explain it to your rheumy on Monday as they can do other things to help.

I wish you luck with your studying and hop you get the promotion you want and the meds that you need

Tracey

skezier

Hi Jan,

Sorry I am late.

Its horrible to have to work and feel o bad. is there any way you can lighten the load a bit? I am ex ambulance and know how hard cpr is on your arms, back and shoulders.

Jan I might be way off here but could you be having trouble with stress? That will do the breathlessness, the palpitations and well you know all that better than I.

See this bone shift brings its own very special stress and that coupled with the type of work, the exams and the promotion thing could all have just got you stressed out?

As I say I might be way of line but it just wondered if it might be.

Jan I know the pressure of having to work cus you can't afford not to and its hell but its good your employers are being supportive.. hey since they are the nhs they should be!

Could you get a bit of time off to just sit back, try and relax and see if the palpitations and breathlessness eases?

Sorry I just wonder if your stressed out of you head just now? I get stressed and get the breathlessness palpitations etc so thats why i wonder if it is.....

Might be just now actually

I really hope you will soon feel a lot better and also that the mtx is ok with you and more importantly it works for you soon. Hang i there and well done on your exam That's some good mark! Cris x

resusjan

HI Cris,

You're not way out of line, in fact, you're absolutely right! I am stressed out at the moment and, like you, think thats the reason for my shortness of breath and palpitations.

I'm trying to get on top of it all, and trying to get my head around having RA. At the moment its not too bad - fingers, wrists, elbows, shoulders and feet aching but not to the extent that its stopping me doing anything. I think I'm just really worried about the future and how we would manage if I couldn't continue to work full time.

Hubby and I had a chat about it all this morning - I think we're going to just go with the flow, see what happens and deal with it when it does.

I'm carrying on with the studying etc at the moment because to give this up will mean I'm giving in to the RA. My employers and tutors know about the RA and are being great but I'm determined its not going to rule my life. And, yes, I'm probably being naive, but thats the only way I can cope at the moment. I'm sure that when (and if) things get worse, I'll have to sit myself down and reconsider.

Thank you so much for your response and comments, I really do appreciate all the support that comes from others on this fourm - you are all amazing

tkachev

Tiredness can be just as bad as the pain.
I want to say I have had breathing issues since going on MTX(over 5 years ago now). I have frequently mentioned it on AC forum.
Recently I was given an asthma inhaler(after tests)but I really don't think it is asthma.
Sometimes at night I struggle to breathe so have to sit up. I must always carry a drink with me when out and about which can be hard to carry when using crutches.
I am still trying to get to the bottom of the problem. Sjogrens (may have spelt that incorrectly) syndrome is something I need to ask about. I understand symptoms are dry eyes and throat and it is classed as an auto-immune disease.
I was promised a chest x ray but that seems to have been forgotten. I am as lost as you!

Elizabeth