Fed up and in pain AGAIN!

I have just had six weeks holiday (education) during which time I had a minor flare. I have been on Methotrexate since April along with Folic Acid, Ramipril for high blood pressure and Paroxetine for depression. My next appt with the rheumatologist is not until mid-Nov. Only 4 days into the new term and my joints have flared - left ankle, right knee, right elbow and constantly hands and fingers.

I am so fed up of the pain. The mtx does not seem to be doing the job I thought it would. I have meloxicam but am not sure when to take it. My rheumy team are too busy trying to cut waiting times to listen to me and I feel I have bothered my gp enough.

I am approaching my 50th birthday and can't see a way forward. I only work part-time as it is and cannot afford to cut my hours any more. I am a single parent (divorced for the past ten years) looking after two teenagers, three dogs, five chickens and two cats

I'VE HAD ENOUGH!

15 Replies

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  • Hi Lillibet,

    Sorry you are going through a bad patch. I'm afraid you will have to arrange to see your GP asap, to review your meds. I am only familiar with methotrexate, but maybe steroids would bridge the gap until you see your rheumatologist and help you get on with things until then.

    It is always easier with RA when you are not working, but maybe (hopefully) things might settle down when your body adjusts to the new timetable.

    In the meantime, try and have a chat with GP, maybe she could change your anti dep, I am on one for last 2 years, think of RA people need it to keep sane.

    I am just gone 50 in August, and have 20, 23, & 25 yrs olds, two dogs & a husband (dunno if it is easier with or without the latter.)

    Remember that you won't feel like this every day, you are probably just tired (I know not that simple) but try have a good nights sleep, and be good to your self tomorrow, don't think too far forward, and stay in the day you are in.

    I am sure you are a great mum and when you get on the right combination of meds you will feel much better.

    How about a bit of counselling, might help you? How long have you been diagnosed?

    Regards, Gina.

  • oh lillibet if it is any consilation there have been quite a few on here with flare ups these past few weeks, infections, weather, bugs - don't know whats going on.

    Its awful these long waits between appointments, what pain relief have you got - i get all my pain relief from the gp and just the dmards from the rheummy.

    Gosh you do have alot on lillibet can you get any rest at all. bother the gp one more time and ask for all the pain relief she can give, i know it doesnt help too much but does take the edge of things.

    I am having a good day today despite the pain but this is the first for weeks so i do understand.

    I really hope you get sorted.

  • Please dont feel like that this site is to support you... re the meloxicam look at the label on the box. I know that sounds obvious.. message me with the details if you like? and I will help you figure the instructions(always after some food! I am divorced and working only part time due to health reasons too!. dont give up your children and pets need you please have have a chat with Gp.. when I was at my worst with bad pain and dispair I had some dark thoughts too.

    Only Ra sufferers know the intensity of how bad the pain can be!.

    Chat on here does help and am sure that any one on here will want to help as much a possible.

  • Don't give up, i've been there and i have had days when i've said i would be better of dead. I've got ra and fibromyalgia, i also have high blood pressure and i take antidepressants. A right old cocktail i can tell you.

    Can you ring your ra nurse, i can and it can be useful, have another go at your gp as they should be able to help. I don't know where you live,i live just outside coventry and thanks to my ra nurse i've got treatment for the fibro and without her i wouldn't have this diagnosess, SO DON'T GIVE UP KEEP PESTERING THE HOSP AND YOU GP.

    My love to you lillibet. xx

  • Hi Lilibet. some very reassuring and sensible blogs from the others. I think most of us have gone through flares, and other health issues recently. RA is no respecter of people - it comes and goes. Have a word with your GP. they would rather know what was going on with you than have you left in pain for any length of time. That is unacceptable.

    How many times do you take the folic acid? Some of us have it prescribed for 6 days a week, some for less than that. I have found the MTX works better for me when I have the folic acid on every day except MTX day. Speak also to your GP about the MTX dosage - it may be too low for you at present. It can take a while to get the right dosage and for the first few months, it is really trial and error to find the dosage which suits you and keeps the RA reasonably under control.

    Also, you have just had 6 weeks off so going back to work with all the stress involved may have triggered the flare. Rest as much as you can when the opportunity arises and don't be afraid to tell people, particularly those at work, how you are feeling. You can also access the NRAS web site and get some very useful booklets about RA and work, etc. Have a look at that.

    Like Sylvi, I also have high blood pressure. I also have a heart condition + medication for thyroid and statins to keep cholesterol down. Sometimes I feel I rattle as I walk! I do find that a combination of Nurofen and Paracetemol helps with both the pain and inflammation. As well as seeing your GP, see if you can get an earlier appt with the consultant at the hospital. Blow their cuts, you are the important one here. GP might be able to help get an earlier appt.

    Can the teenagers do a bit more to help you? I know how wrapped up in their own affairs they can be but I am sure that if you told them how you feel, they would be willing to help?

    Anyway, good luck and I do hope you feel better soon. LavendarLady x

  • Thank you all so much for your kind words. I slept on the sofa last night because I couldn't get up the stairs! Am still in lots of pain this morning.

    Today, Sunday, would be a good day to get bloods done as ESR would be off the scale!

    I have been told to take folic acid 3 days after mtx, which I take on Saturday a.m.. Mtx dosage is currently x8 tablets per week. Rheumy said I am probably a candidate for anti TNF, whatever that is?!!

    Feeling a bit more positive this morning. The house looks like a bomb has hit it, there is a ton of washing and ironing to do, chickens to clean out, dogs to walk, etc etc. etc.....

    BUT the sun is shining here in Essex so I am going to sit in the garden with a cup of coffee for a while and count my blessings.

    The teens are away for the weekend (funnily enough, at their father's wedding - his third!) so I am able to rest up today.

    I will call gp tomorrow and get an earlier appt with the hospital. From reading other blogs on here, it seems I am somewhat lacking in information. I do not have access to a rheumy nurse/clinic or a helpline telephone number? Is that unusual?

    Will report back in this evening.

    Thank you all again for you support. It really does help to know that there are other people out there who know exactly how this feels.

  • HI lillibet,

    great to see you feel a bit brighter this morning and that you have decided to call the gp and hospital.

    I have a number for a rheummy nurse and there is an answering machine message which says if you are having a flare up ring your GP straight away. Its hard to get them at the time but they do ring you back so if you could get a number to ring that would be a life line.

    I know what you mean about the housework - that is the thing that really annoys me more than anything, i struggle into work because to sit in my house with so much ironing washing etc to do drives me mad and i know that everyone says "sure it doesn't matter...." but well you know.

    It is pouring here and the wind is hurling around the house (n. Ireland) so enjoy your cup of tea in the sunshine.

  • Dear Lil,.

    I am pleased you are feeling brighter, that is large dose of methotrexate, anti tnf/ biologics are an excellent option if you can get them.. NRAS do a good publication on them.. lots of people on here take them and they are the best to advise you as they can speak from experience.

    There is a poll on this site on methotrexate and folic acid taking have a look you might find it an interesting read!.. re methotrexate dose you are getting to the top of doses used for RA.. so an alternative is the the sensible way forward especially if you are suffering so.

    Dont be frightened to ask you gps advice either! mine are excellent.. now back to the tablets. ,assuming they are from your local chemist ?ask them to explain

    the normal dose is once daily so in the morning after breakfast or lunch if you prefer! is fine.. though please check with your local health professionals

    Alison x

  • Hi Alison, I used to have to take 10 tablets of MTX and because they made me so sick, I spaced them out during the day, 4, 3 & 3 otherwise couldn't have coped! My consultant was happy with that. I suppose a better way than throwing them back up again! LavendarLady x

  • The once a day tablets I was referring to were the meloxicam..( ant anti inflammatory) however the methotrexate we dispense in the NHS hosp are always labelled as follows eg" three to be taken once a day.".( consultants can sometimes have different opinions ideas on how to take things like yours did.. so the sensible advice to any one is to always say like I have please check with your local health professionals.. but your consultants advice makes sense..

    Alison x

  • Hi, glad you are feeling a bit better, i too work at a school, like you am already worn out and we have just gone back, have had to cut my hours down from 37 to 29 but am still struggling. I was on methotrexate but i had more side effects and no change in my RA, now on sulphrazine and Meloxicam and anti-depressants, hopefully these will work !

    I have two girls 19, 23, two dogs and two lizards ( not sure whose more hard work ).

    This site is great for advice and friends who are all going through the same things.

    Take care Karen x

  • it is hard working with RA I was doing 28.75 before current bad patch.. now doing 20 hrs and hoping to go up gradually we can only do what we are able to do.. dealing with our disease takes most of our energy.. my original contract before diagnosis was 37.5 hrs

    I know in my heart and have had to accept Im not well enough to ever do this hours excepting some miracle.

    However every one is different as is their illnes there are a few people on here that work full time still ! my aim is to try to get to about 28 hours if possible.

  • Hi, poor you. Working in education is really demanding. Septembers are always the worst time, new term, new people, new timetables. So add RA and its effects, and its no wonder you feel bad.

    I struggled on for about 12 years after diagnosis. I hope you have employers like I had, who make all sorts of adjustments for you, including basing all your work in only one place, supplying equipment, supportive seating, etc.

    Please do make sure you are getting all the help there is available to you. Good luck!

  • Hi Lillibet

    May I suggest you have a look on the NRAS website as they have a whole range of fantastic publications, all free, which will explain what RA is, how it is likely to affect you, which drug options are available to you and how they work, and, not least, how to look after your joints etc.

    You can also ring the helpline, and the girls will put you in touch with a support volunteer who has experienced the same problems. Again, this is free of charge. They are also able to give sound and sensible advice themselves.

    I would also write to my rheumatologist, explaining exactly how you are feeling and that you are having difficulty carrying on a normal life because of the pain and fatigue levels. Do send a copy of the letter to your GP so that they are both informed.

    Rich C (a member of this forum) knows a great deal about work place assessments and how to make sure you have all you need to work comfortably. I'm sure if you pm'd him, he'd be happy to advise.

    Hope it all works out well and you soon start to feel much better

    Jeanx

  • Just a quick update for you at the end of what has been a trying week!

    Had bloods done Tuesday, but not in time for them to get to the lab that day.

    Had appt with gp this morning (not my usual one, unfortunately) who was incredulous when I told her I had not been given a contact number for the RA nurse at the hospital. Explained that next rheumy appt was not until mid-Nov but couldn't wait that long.

    She is faxing across to the hospital today to get an urgent appt. next week. Regarding the depression/Paroxetine she was unwilling to increase the dosage or change the meds because this might trigger an increase in the depressive symptoms which she thought would be unwise to try to cope with until the flare is under control.

    But the best news of all is that school have agreed to me going onto a 4-day week. It will mean a reduction in salary but I have already contacted the tax office to see if it will change my tax/child tax credit situationl. Already the relief of knowing that I don;t have to push myself so hard has taken the edge off of the pain.

    Goodness only knows how I will cope financially, but it is not worth risking my health for.

    My question now is 'are there any other top-up benefits I could apply for to compensate for the loss of salary'?

    Hope you all have a good weekend with plenty of rest!

    Liz

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