Sitting here cannot sleep, and so looking forward to taking week 7 of mtx. mY Hands and fingers hurt, they are swollen and stiff, wondered if this medication will ever work, i have had bad headaches, tummy upsets, now ulcers in my mouth and my mouth hurts. I have had to rhumy appointments, the first one for my diagnosis, which was a leaflet slipped accross the consultants desk and two leaflets on the meds, and a depot steroid injection which really messed up my moods, and no opportunities to ask any questions, the second one, was a starting dose of mtx of 15mg, another injectioin and about to have my third in a few weeks, she did not recommend pain medication, supports or anything, or any support with the diagnosis. She did say the mtx could go up, etc, and at my last appointment when I was in so much pain, it was oh the illness will stablise, don't worry. If I have another professional say that to me at the moment, i will kick them. I am tired all the time, driven mad by the pain, and it is going to get to the stage and i am nearly there where i will get to the shed and get my husband to chop the hands off. My Rhumy appt is in April, do i ask about splints, steroids oral that is, and prarfin oil, to rub in to the hands, I just do not want to be smiled at sweetly and handed more medication when i need to know how to protect my joints exoecially at night and during the day, and what are the best exercisises to do. I thought a local RA group would be good for me to join, and i e mailed the person who runs the group local to me, and they have not had the courtsey to ring me back and that has been six weeks ago, one of our local groups has folded because no one would run it, and i have not met anyone with RA and on top enduring mental health problems, I battle BIpolar on top of the RA, it is one long learning curve, and the patient is left alone to get even the basic information and no support, the GP says a consultant problem, the CPN fobs you off speak to the Rhumy nurse, i would if our centre had one, and the pychisatrist go to soical serivces and get help from them to help out at home, yeah already lost out on that, you know the answer to that, you have a husband and a family at home, they can do everything there is nothing we can do, I just wondered what other peoples expereinces were in the first few months of being diagnosed, and anything you can share with me that may help me as i am battling the mine field. Really scared and anxious, and totally fed up. Hang in there all of you and thinking of you all.
Does it work?: Sitting here cannot sleep, and so... - NRAS
Does it work?
Jetblack, you can ask for the ot and when you do ask for the hand therapist. I am under then and i have splints from them. Look in mobility shops and see what you can get to help yourself. There arthiritus gloves that you can buy. Get a wax bath for yourself they are good and not too dear. I have cups with two handles on,special thick handled cutlery. I have brought a lot myself as the system is so slow.
I can give you a name of a company if you want to invest in some of these things.
Hope this is of some use to you. Keep you chin up it will get easier in the end.
Sylvi.xx
Hi Jetblack. Sorry to hear you are in so much pain. Are you on painkillers? Speak to your GP and see if they can give you something more/else for the pain. Mouth ulcers because of Mtx. (have said on another post this morning) my rheumy nurse advised me to double up vit. c tablets for a few days - I did and it worked for me.
If you are under a hospital your rheumy consultant will have a secretary (or the rheumy department will) and tell them that you need to talk to someone.
Also, look up DIAL in your area (it's a disabilty advice bureau - think I've got the name right) they may be able to help you with anything you can claim for and if you can get to one of their offices they will help you with form filling.
Meantime - hands/wrists swollen and painful - I have found soaking them in cold water helped me. (Some people prefer warm - we are all different).
You are not alone - there are always people on here to share your problems with.
Judi
Hi - I feel much the same way - never even had mood swings or anything until I got the RA. It's just such an unpredictable disease that we can't find the right way to view it sometimes and it just plays havoc with us so you're not alone.
But you do need help and I would take Sylvi's and Judi's suggestions up straight away and do all the research you can for yourself. I have found that the only way to help is to learn to help myself by reading and researching because the system is just designed to frustrate us -especially in the current economic climate - so we need to take control wherever we can and then hopefully more will happen for us.
These groups you are trying to join are probably made up of people who are in equal amounts of pain and they just don't want to have to be in charge of others - do all the running around and organising etc any more than you would. So that's why HU is so good because it's here and we are all here to support and advise and let you let off steam etc. Take care. TTx
PS should say that I think MTX takes between 8-12 weeks to work for most people and my GP said it can take up to 6 months to really do it's job so you will hopefully have something to look forward to re improvement. If it doesn't work then they will try you on other drugs until some combination does hoepfuly work so please don't despair after only 7 weeks - my new dose of 15mgs has given me a lot of relief in wrists and hands especially.
Hi Jetblack, so sorry to hear you are in so much pain. When we are first diagnosed it does take some time to get the meds right. I had to have steroid infusions at the hospital spread over several days to reduce the swelling and inflammation and get me out of the wheelchair I was in!
MTX takes up to 12 weeks to start working so if you are only on week 7 there is a little way to go before you begin to feel the benefits. Have you tried pain killers and anti inflammatories? They do help. My Rheumy recommended 1000mg of Paracetemol and 400mg of Nurofen taken together and it does work. Very good at night to enable you to sleep as well. I take the Nurofen gel capsules to protect my stomach and always take them on a full stomach.
Ice packs also help with the inflammation and help to bring it down. By all means speak to the hospital about splints etc for your hands although I think once the MTX kicks in, you probably won't need them all the time. I was diagnosed 4 years ago and don't need to use splints at present.
Your local beauty salon will almost certainly do paraffin wax baths for your hands. Very soothing.
I found Bonjela very good for the mouth ulcers which I still get from time to time and your GP can give you some anti sickness tablets to help with the nausea. I take it you are on the MTX tablets? I found the only way I could cope with them was to spread the dose out during the day and take them after food. (Now on the injections so the side effects are very few and far between).
You can get help from Social Services for equipment to help you round the house despite having a husband and family! I had grab handles fitted to the outside doors and have special toilet seats all supplied by social services.
Their own occupational therapist came out to see me and was very helpful and kind. So worth contacting them again.
As you have bi polar as well, you have enough to put up with at present, without being fobbed off by the medical profession! Can't your husband do something like jumping up and down and shouting? Or at least seeing your GP with you and demanding extra help. We all keep saying on here, we pay their wages so we are entitled in return for their assistance. Don't give up - things will get better.
Do go onto the main NRAS site, they have many booklets you can get and volunteers you can talk to when you feel down and in pain who've been in the same position as you. We are all here for you on this site as well. When you feel up to it, you can also apply for Disability Living Allowance and a Blue Badge for the car.
Best wishes. LavendarLady x
Hi jetblack. I know you said you'd kick anyone else who said you have to be patient for meds to work, but sadly it is true. They do just take what seems like forever to have the full effect which I found very hard to deal with. And must be so much worse for you as you're bipolar (and it does baffle me why you were given steroids which frequently cause mood swings).
But you've made it through 7 weeks so probably more than halfway there to pain starting to ease. Do try all the non-chemical things that people have suggested - I find that they also help as a distraction as it means at least I'm doing something. But do nag your mental health team - this disease is hard enough emotionally for those of us who don't also have mental health worries, so please take care of yourself and ask them for more support.
1. take non-steroidal anti-inflammatory tablets and 2, 4 times a day, of paracetamol tablets on a regular basis throughout the day - or take regularly whatever pain relief you have prescribed .
2. use hot/cold hand baths - find our what works for you, either just cold, or just hot, or alternately with two basins.
3. wax baths - ask the pharmacists, or a beauty therapy salon
4. find out about EPP (now called Educating Patients programme, previously Expert Patients Programme) - courses for people with long-term health conditions or specific Rheumatoid arthritis education courses in your area - put in EPP on a search engine (I do voluntary work for them in Wales and think it's a brilliant programme for people with long term conditions). This will help you to find ways of coping with your illness and better skills negotiating with health professionals etc.
5. It will get better but this is one of the big holes on the road to recovery that you have to climb out of to get to the other side and back onto the road - you have the ladder - MTX to start you off but it's a long climb!
6. last but not least, ask for gentle hugs from everyone! And a virtual one from all of us here who've been there.
Hi guys, thanks for all the replies really appreicate your input, in regards to the painkillers am on 8 paracetamol a day and tramadol three times a day. Cannot have anything with iprofuren in because I am asthamtic and also on liquid lithium which would make the levels toxic. Have tried co codomol, co dryamol, etc, they did nothing. tried icing the hands, heat packs, gloves, different creams still a way to go. The mental health team are concerend about 8 paracetamol a day, but the GP decided it, What I am going to do is write a lot of things down for my next rhumy appt when I am able so i do not forget anything. Hang in there to you all and a gentle hug to you all, xx
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