I was diagnosed on the 20th December 2011. I was subsequently given a steroid injection for the pain, and assured this would help. In January I was put on methotrexate tablets. They made me sick constantly so I was advised to stop taking them. I was also given another steroid injection (which did nothing to relieve the never ending pain). March I was put on methotrexate injectons. I am in constant pain in my hands, wrists, elbows, knees, hips, feet and shoulders. So far I have had cocodamo; 8/500, trammadol, ibuprofen, cocodamol 30/500, morphine pills, butrans 10mg patches and currently cocodamol 30/500 and 20mg butrans patches. NOTHING is easing the pain. I am also on a ventolin inhaler as I get out of breath walking or doing much at all. I cant take anti inflammatories as they made me sick. However, I am still being sick EVERY day.

I wake up at roughly 4. 0clock every morning due to pain. I have seen an OT who gave me splints and isotoner gloves to help take down the swelling in my hands. I am just sooooo tired every day, fed up of being sick, losing weight cus I cant keep the little food i take in down. The never ending pain is making me feel suicidal. I suffer from depression any way and am on meds for an under active thyroid..which i probably am not benefitting from due to my "food escape" issues. I have seriously had enough and would really appreciate any advice as I really dont know how much longer i can take this. Every day is a struggle. I am sick of being told there is a light at the end of the tunnel....personally i think the bulb has gone! My sense of humor and a loving faamily and fiance is the only thng keeping me hanging on...and the thread is weakening.

At first people were sympathretic, but now thats waning too. Fed up of feeling and being acccused of faking it (as if). My 14yr old does not attend school due to mental health issues and i am bombarded with school visitors, CAMH consellors. I just want the world to go away and leave me alone. Any, ANY advice would be helpfull. I can no longe3r have a bath, as the .last time i tried, my 14yr old son had to come help me out as i got stuck! I complain about the pain and the GP tells me to ask the hospital...the hospitL tell me top ask my GP. Help!!!!

My heart goes out to you too. I have been there when nothing seems to be working; but things do improve as they find out the right medicines.

I agree with all Julie has said. I also use anti-sickness tablets. You could ask your GP for these and see if they work - ask for an emergency appointment with your GP for tomorrow (if you say to the reception its an emergency, they can't ask you why!). I would also tell them how you are feeling too - may be tweaking the anti-depressants might help for the time being until the RA is under control.

Next week - I would see if the anti-sickness have helped - if not, or even if they have a bit, I would phone your consultants secretary (f you don't have a rheumatology nurse) and leave a message to ask what you should do, as you are being constantly sick and in so much pain, and all our joints are swollen. You could ask if it's possible to have a steroid infusion (iv steroids straight into your bloodstream - takes about 2 hours) or some steroid tablets. Also ask how long to keep trying the MTX or whether changing drug might help.

You are in the very difficult period when finding the right medication can take a bit of time as most of the drugs take about 3 months to start working. But there are steroids for use in the interim (the injections don't always work on everyone).

Family: You could probably do with some help around the house, so have a family meeting at the weekend and tell them you need some help at the moment. Have a list of jobs and ask them if they could choose what they prefer (I see you have 3 boys). Mine all chose their jobs and I was surprised at their selection. ONe cleaned the bathrooms each week, one hoovered the whole house each week, and the other did all the washing lifting (moving it from washing machine to tumble drier in garage, then back again into kitchen for me to sort; then taking it upstairs). My husband chose to do some of the cooking. They all had to help lay and clear the meals! It actually worked as they felt they were helping me out.

So don't lose hope - there are lots of different drugs out there to try. Although, at the moment, life seems bleak... keep focused on the good things in your life, ie your family. And also be assured that there are many of us who have felt like you do... and it is lovely on this forum to be able to be honest and discuss how we feel.. and get as much advice as possible.

So in summary:
Tomorrow: get emergency appt with dr - anti-sickness and med check up
Weekend: family meeting - jobs
Next week: phone rheumatology nurse or speak to consultant's secretary (good way to get to consultant)

Hope that helps a little bit.

Anne

Hi Mandy

I don think I can add a lot to what the other ladies have posted to you. We certainly do really understand how awful it is for you, you really need to try and get this pain under control as best as possible, as it really does pull you down. I know it is really hard but try to remain positive, you have a wonderful caring family and as will eventually get your life back on track, the medications now available to us are truly incredible you will get there.

Take care, Julia x

Hi Mandy

Great advice here so do take heed of what these ladies are saying; we are all truly tried and tested in the vagaries of this cruddy disease so you can be sure recommendations usually come by way of our own personal experiences.

I am sorry to hear of your son's problems; we went through similar experiences with one of ours last year (he has now completely turned around ... miracles do happen!). When you already have such a lot to deal with additional worries can drag you down very easily. AS CAMHS are on the case let them, for now, deal with these issues but make sure they too are aware of your situation. You need them on side to help with the home circumstances.

I was diagnosed almost 24 years ago, a time when meds were just being released from the ark (Noah's that is!). I experienced much of what you are going through now and was hospitalised for many weeks. If the light at the end of the tunnel has gone out you definitely need to change the ruddy bulb otherwise you won't be able to see the way ahead.

There could be many reasons why the meds don't seem to be taking effect but I'm not medically qualified to advise. However my suggestions would be to pick a food that you feel (or your stomach tells you it's) okay with. I lived off very lean chicken breast for three months because everything else made me sick. Sipping (not gulping) lemonade is good for nausea. Make sure you follow the exact dosage for the tablets you are given and spaced out according to the instructions. Take with water, not hot drinks. Always keep pain meds topped up to get maximum relief; they won't work effectively if only taken when you feel you need them. Anti-inflammatories (Diclofenac, Naproxen etc.) usually need a stomach protector such as Omeprazole, but generally work very effectively in reducing inflammation and therefore some of the associated pain. Methotrexate has for a long time been the gold standard drug in the treatment of RA but like many of the drugs we take it can have side effects.

There are lots of drugs now available which will modify the course of the disease but firstly you do need to sort out the problem of nausea. Further investigation would perhaps seem appropriate in case there is an underlying cause not related to your RA meds. You have already had a bucket load of different pain relief which may suggest that perhaps the stomach lining is inflamed or irritated. Urgent appointment with GP needed! It is the GP's job to organise pain meds and deal with the problems that arise from them.

As Doreen suggested do give the NRAS Helpline a call. It's a freephone number, 0800 298 7650 available Monday - Friday between 9.30am and 4.30pm. You may wish to speak with a member of the Volunteer Network who will be able to lend a listening ear and offer support.

Do let us know how you go on; we will all be waiting for your next post! And don't forget the new bulb whilst you're out at the docs!

Take care Mandy

Lyn x