I am on oral MTX my specialist did have me on the injections but I on one occasion I really hurt myself (I had been doing it for 2 years already),after that I couldn't face the thought of doing it myself. I went without it for about a month until I could see my specialist to be changed back, the thought of taking it was worse in my head than the pain,crazy bacause the pain was agony.
I am 45 now and have had RA since my mid 20's, I am sick to death of people telling me the pain can't be that bad. I try my best too live as normal life as possible, MY walking is very slow because of it and unfortunately I have been on weight recently which i hate but the depression of the pain sent me to the biscuit tin. I am trying to lose it again but it's so hard when exercise hurts so much. Some days I even have to walk down the stairs backwards as the pain hurts so bad and it seems to hurt less that way, my kids laugh at me for it but I'm past caring. I really could do with using a walking stick but I'm too stubborn to admit that one would help. That's admitting defeat. If i could have a wish, I don't want three, I would wish for a life free of pain that would be nicer than money,although that would be good. I pray my kids never suffer with it.
I am scared of getting old I can't put up with this level of pain for the next thirty or forty years..
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Cassie66
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I was diagnosed 6 years ago, after 10 years of fibromyalgia and I too had trouble getting up and down the stairs, I did use a stick, but apart from work I avoided going out completely, and didnt drive for 3 years. The meds I'm on (mtx, plaquenil, steroids and biologics) have helped a great deal although I still have times when stairs (and everything else) are a struggle.
I too feel the same about growing old, it feels like a life sentence and as for my kids... I agonise over that fact that they might get it.
Hopefully, you will get some meds that work for you, it seems like you have waited too long for this.
Morning girls, I have ra and fibro and i'm 56yrs. I'm like you don't like admitting defeat. I have had to get a stairlift and boy does it help. I've had to have an electric scooter which i hate,but without it i would be housebound.I have to use a stick as well. I hate the pain that my diseases causes,but i can get out and that is a bonus. If you have to have help take it,its not worth all the pain to suffer like that. A lot of people are very kind if they know your suffering. Don't let pride stop you living, i am in the same position as you. Make a joke about having to use a stick,scooter,stairlift etc. My friend calls me emerson fittapaldi the racing driver when he sees me on my scooter. So make it fun that you have to use a stick,like at least i can hit you a lot easier.
Hope this little missive cheers you up.
Sylvia.xx
Cassie i feel the same, although i have only been diagnosed 10 months, life can be just a horrendous pain at times and people with their thoughtless comments make it so much worse - my pet hate is when i am steroids and not hobbling about (the ra has made a mess of my knees) people say" ahhh youre better" and when i am off them again its an exasperated "but sure i thought you were sorted".
Like you i do not want to start using aids at the age of 44 and i have blocked any thought of being like this in the future. I still will not believe that this ra is for keeps - i can't bear to think ahead. I have also put weight on and can't wear any of my clothes and am too down and p***** to buy any new ones. I am going to seek some help for feeling so bloody awful on top of the pain.
my goodness what a way to start the day, i am away to get the kids up!
Right girls put some lippy on and paint your nails,just to cheer you up. I have my nails done every three weeks and a girl in boots always asks me what colour my nails are this week,that means someone has spoken to me,it helps me,by the way i have five different colours on my nails. I'm suffering with pain and i find it very hard so i understand what your going through. My hair is five different colours as well,someone always makes a comment about it so that means someone has made the effort to cheer me up. I'm under clinical pschycologist as i'm depressed and anxious as well. I don't work as i'm in so much pain and nobody would employ me with what i've have wrong with me. Bomarche has some lovely clothes for the larger lady better than evans. I too am grossly overweight as well. I have had my hubby in hospital from thursday until tuesday this week and i was hopeless without him as does most of the caring with my daughter when he is at work. He is now off sick for another two weeks. i hope this has made you laugh if nothing else.
Hi Cassie, I am so sorry you are having such problems at present. Children can be unsympathetic pests particularly when they don't really understand what is happening. You can get some very helpful booklets from NRAS about RA, living and working with it. Have a look on their website. Give one the booklets to your children to read and hopefully they will then understand what you go through.
You don't have to put up with this level of pain at all. I am sorry you had such a bad experience with the injections - how about having a chat to the practice nurse at your GP surgery? Mine did my injections for me for the first month to be sure I was doing them right and suggested I go and see her if having problems. She always asks when I see her if everything is ok and is willing to do the injections for me if I ever need her to. I have bruised myself on occasions by being a bit cack handed with the needle!.
You mention you are now back on tablets. How many do you take at a time? Are you also on folic acid?. And has your consultant suggested you go onto one of the anti tnf meds? It seems to me that your consultant should be suggesting better medication given the level of pain you are suffering. If you have no appt with him/her shortly, suggest you ring the dept at the hospital and get an early appt. Your GP should be able to help with that as well.
With the tablets, you can feel very sick. WhenI took them, I found it was better to space them out over the day rather than take them all at one time. Also your GP or pharmacist can give you something to make you feel less sick.
There are also steroid injections which can help bring the pain and inflammation under control in the short term. Many of the people on this site take steroid tablets for a while but my own consultant said he woudl rather give me an injection when needed as once on the tablets it is very difficult to get off them again.
Weight gain is a problem with RA because of the lack of exercise and you feel so rotten that the biscuit/cake tin is calling, not to mention the chocolates in the cupboard! Exercise is painful but try some gentle stretching exercises before you get up and again once you are up. Nothing strenous - see what a cat does and copy it. I do find that helps. Also I stretch upwards on tiptoe (assuming I don't fall over!). Try to get as much rest as you can. And get that walking stick to help. It is NOT an admission of defeat - it will help to steady you and prevent falls. the last thing you want is a fall and a broken hip or something. Sorry to go on a bit but hope all this helps. Let us know how you get on. Best wishes. lavendarLady x
I take 7 mtx weekly. I like you advice on exercising like a cat. I will give that a try. Thank you.
I put weight on due to steroids and im poor due to reduced hours contract, I m not to proud to say that I have bought a few items in a bigger size from charity shops, and then when I loose the weight I can hopefully return to my own clothes..! x
Thanks girls for the support I hate to think of people having this, but on the other hand it's nice knowing I am not on my own. I am sure you all know where I am coming from when sometimes it makes you feel all alone. I have been on steroids too I hate taking them because they make me eat for an olympic event. At the moment I am on plaquenil,mtx,folic acid,calcium,kapake and diclofenac. The last two I seem to need permanently which I know isn't good for me but without my joints are agony. I think tomorrow I will swallow my pride and by a stick but only for really bad days. I have a 6 year old daughter, amongst others, some days I find it hard to keep up with her. My partner would like another child,he has more chance of winning the lottery than me trying again for a baby. Nothing is parting me from my medication.
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My ankle hurts :(
Experiences or thoughts re. DAS?
Waiting Game.
