Hi all,

Forgive the moan but I don't usually post on the site and now have reached the point where I need to let rip!!
Feeling really fed up..saw rheumy nurse about 3 weeks ago..am on MTX (20mg by injection) prednisolene, and at last visit leuflonomide which was increased from 10mg to 20mg at last visit..been undergoing treatment since Jan last year. So tired..more than usual and struggling to keep up with managing the hospital appointments with work now. For example told need blood tested every 2 weeks now until next visit to rheumy nurse on 19th March.. I can do these Monday evenings after work so fine. However, when I saw nurse last she advised me (again) to have physio so said would give it a go as long as appointments could be at convenient time. All ok there, have first one of course of 6 on Monday for hydro starting at 8.30. Sounds ok but as I work in London and the hospital is in Southend I probably wont get to work til about 11-11.30 depending on trains... then of course, some Mondays I have to go to hospital twice in a day, hydro in morning and blood test in evening!
Oh and then I have another physio assessment coming up for my hands soon. The week of 15th March is a classic - the one week I really need to be at work as my boss is off on hols and I need to cover, on Monday I have hydro in morning (arrive work 11.30), then must leave dead on 5 for blood in evening at 7pm. Then on the Wednesday have appointment at 3.30 for hand clinic (leave work 1.30pm), and on Friday have rheumy nurse appt at 3.45 (leave again 1.30)!
This week I have felt really bad..my wrist is starting to play up, troubling twisting door handles, lifting anything heavy etc and my knees and neck all playing up. But the main thing is the tiredness, nausea and headaches Ive had recently. On Friday at work I felt so bad I threw up and had to go home..I had my blood test on Monday and phoned GP as so concerned asked them to tell me if results ok.. first time I have been asked to get a random blood glucose done as well...receptionist said GP had written blood glucose all ok but evidence of arthritis (tell me something I didnt know!) and anemia. Anemia ? News to me.. would this explain the tiredness more than usual? do I go back to GP or leave until I see rheumy nurse on 19th? Could this be linked to fact I have had nose/sinus infection for over 2months now which means each morning I get congested nose and whenever I blow it blood comes out..fed up with this as well..rheumy nurse said last time she wants to reduce/take me off steriods as am on top dose of MTX and Leuflonimide now but can't do so til get rid of nose problem which GP says caused by pollution(?). Can't get another GP appointment. Finished cream he gave me and antibiotics over week ago and still got it...
Wow is this therapy..feel better for typing this, could carry on but wonder if you still awake ? Sorry for the rant and for being boring..

Blimey no wonder you need to let off some steam.We are all here to listen and support,you must wish for a twenty six hour day.

Hi, welcome to the forum.

Stewart's right , you may be better having some sick time till you get stabilised.

You do need to see your GP about the anaemia, don't leave it till next month.

Looking forward to getting to know you.

Doreen xx

Hi welcome to the forum, it is a great source of support. I agree with the others, it does ound as though you need a period of sick leave. I know it is difficult, but we have to putourselves first. I hope they can get you and your meds sorted soon.

Take care

Deb x

Thought I'd have a read on the Forum to get a better understanding of this terrible tiredness I have because of anaemia. I have recently had my dosage of MTX stepped up and wondered if that had anything to do with the light headedness.
Sorry to hear your having such a bad time! I think it was great that you posted this and hope it makes you feel loads better!

Take care
Mari

Hi Mari,

Welcome to the forum.
The fatigue associated with RA is bad enough but with anaemia as well it's no wonder you are tired and light headed.
Have you got some treatment for the anaemia?
I hope you and Ali will keep posting, you'll get lots of support and advice and all of us on here know exactly what you are going through.
Looking forward to getting to know you both.

Love, Doreen xx

Hi,
Thank you to everyone who posted..feeling a bit tearful today don't know why but reading your responses has made me realise I am not alone and this really helps. My husband is going to drop me at hospital in the morning for the hydro and while he is waiting for me he will be on the phone to the GP to ensure I can secure a doctors appointment to see about the infection in nose/sinisis which today is at its worst and get a prescription for the anemia. Have taken on board all your comments about some sick leave..have considered this long and hard but am afraid this is not an option, especially in todays market. Due to redundancy in Jan I am only now contracting with a 12 month term and think if my current/future employers saw a prolonged sick leave record I would find difficulty getting another job.. I am the main breadwinner, my husband is self employed wih health issues too, and I think this with the arthritis etc. is weighing heavily on my mind, as financially things will be difficult if my income is not there. We are just adjusting to live with me with the arthritis now, agreed today we must get a cleaner for example, as we both work long days and at weekends, we cannot commit to time cleaning not knowing how we will feel etc, Thankfully we agreed a few years ago children would not be for us, although we both relatively young (can I saw 40 is young?!). Will keep posting and would love to hear more from everyone...Thanks again!

Poor you, this sounds like an awful to to cope with.

My hubby grew up in Westcliffe-on-sea and commuted to London each day, it is a long way!

I hope you can manage to find some help..

Love,

Amanda

So glad you've got this off your chest. Yes I've just been diagnosed as anaemic and am having tests to see which kind of aneamia it is.

Did you know you can get a booklet from NRAS which is to give to your employer explaing how the needs of an RA person will require them to have more time off work etc. I got one and highlighted all the relevant bits and gave it to my employer.

The build up of appts. can be overwhelminmg at times. But I've found that as time goes on they get less and the pressure is eased. It is depressing to see them all lined up on the calendar some months isn't it?

Oh, I forgot to mention anaemia! RA is almost synonymous with anaemia, but then so is MTX...

I have been anaemic for years and years but then I am also coeliac so no one is even sure where it originates from!

There are all kinds of different types of iron tests to have and then differing types of anaemia. Pernicious anaemia is a severe lack of Vit B12 for instance....

Love,

Amanda