Just diagnosed and feeling quite desperate need help!

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Hi, I have believed it was RA for many years and have been fobbed off time and time again until i finally got a rheumatologist that did proper tests. The radiographer confirmed RA after doing scans but still need to go back to rheumatologist for confirmation. I have been struggling more than ever this last year or two but now i feel so desperate with the pain i just don't want to carry on! Now my shoulders hurt so much I can't hold anything, my hands are getting extremely cold and sore, my feet have been this way for a while now, my elbows ache throughout the night. My legs get random aches that bring me to tears but my hips are the worst, I just cant cope with the pain anymore. My children and partner are aware of how i am feeling but I still have to drag myself to the kitchen for a drink and end up making them one too. I am still expected to do the cooking, hunched over and shuffling round even though it cripples my hands chopping and stirring and my back feels like its broken.  I am struggling so much - at best I manage tasks with lots of pain, at worst tasks are impossible. I want to run away but cant abandon everyone, but I just don't know how to cope with this dreadful pain. I am only on run of the mill pain relief which does little, if anything. Any advice would be very much appreciated. Thank you.

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  • Posted

    Hello sandy. Are you taking any pain relief? First and foremost that's what you need. How old are your children? If they are older they need a kick up the backside as does your hubby. You said you'd seen a rheumatologist. What did he say? You need to be on some treatment.
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    • Posted

      Hi Matron thanks for replying. I take co-codamol full strength and tramadol, but they do extremely little for the pain. I am awaiting my second appt with rheumatologist and keep ringing her secretary as she did say she would see me within 3 months of my first appt and now that the radiographer has told me it is definitely rheumatoid I just want some proper treatment. It has been two months since my first appt and even in that time things have gone from very bad to much much worse! My hands hurt just doing this on ipad. Kids are now 20 and almost 18. My partner helps where he can but I wonder sometimes if he understands just how bad this has become. There is no way i can cook tonight and I have been in bed since I made myself (and him) coffee and sandwiches about midday. Its now almost 5.00 and I know that my son will just order himself takeaway which really annoys me. My daughter will do herself something simple. I dont know what my partner will do and it makes me feel guilty for not cooking. I usually cook healthy meals from scratch -curries, stir fry's, casseroles etc but I am done in right now and I know I couldnt stand in the kitchen for more than a minute. I feel lazy being in bed all day. I have slept most of the afternoon as I didn't sleep during the night with the pain. I was on suicide watch last week cos i told my partner I didnt want to be here anymore and I had asked him to leave cos I just feel I dont want to keep asking him to do things for me. He had gone to his flat and when I was talking to him on the phone he got frightened I was gonna do something silly and phoned a blinkin ambulance. After 4 hours of waiting to see a doctor though I just said can I go home now please I am not going to harm myself or anyone else I just said I didnt want to be here cos I was feeling very low, so he just said yeah, thats fine you can go home. My son was really concerned and made all sorts of promises, all the right noises but here I am again feeling totally desperate and no-one has even been in to see if I want a drink. I hate being like this I wanna be out walking my dog, cooking nice meals etc but they dont seem to understand that this is not my choice. I want someone to sit down with us all and explain to my kids especially how difficult things are and that I am not being this way out of laziness. Because I have been ill for quite a few years now they have been used to it, but until recently I coped very well and got on with things as I was able to so I think they just think I still should be able to grt on with things. Sorry this is longwinded and thank you again for your reply
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  • Posted

    Hi Sandy,

    first thing ink is you're not on your own in feeling like this. It's difficult for family to understand how it feels, they just see the word arthritis and assume that it's 'just' joint pain.  Well, RA is much much more than that. It is totally debilitating until treated.

    you need to start drumming your heels and banging your fists and insist that you get treatment immediately. Whatever teatment you are put on will take up to twelve weeks to get into your system so the sooner you start the better.  Ask your rheumatologist for leaflets on RA, if you're in the UK then all the rheumatologists have leaflets for families to help them understand the condition, and most importantly you've got to stop feeling guilty and you've got to ask them for help. A direct request such as 'could you please make us all as drink' is hard to ignore.

    Its hard I know, we are brainwashed into thinking that we have to do certain things. I was the same when I was first diagnosed but you have t put yourself first for once. 

    If you ask for help and its refused then you have justification for a kick up the backside, but you have to give them the chance first by asking. Remember, you've always done things for them, they don't yet understand that the tables need to be turned, give them a chance and good luck.

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    • Posted

      Thank you Linda I will definitely try to get some of those leaflets. I am going to set my alarm to make sure i ring doc at 8, if its any later I cant get an appt, which is what has been happening every day the last week. I am in the UK. I will have to make the kids understand more, thank you.
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  • Posted

    Hello again sandy. You really are having an awful time. I'm glad you are seeing a rheumatologist but co codamol on it's own isn't helping. I take codeine, Naproxen and my GP prescribed Nefopam last week after I kicked up a fuss and told her I couldn't cope with the pain any longer. Would your GP prescribe something else to tide you over until you get your hospital appointment? I think you need an anti inflammatory.

    I have a GP appointment this week and took advice from someone on this website to write everything down. My symptoms and how I was feeling. I intend to present her with that piece of paper.

    How would you feel about showing your partner your post? You explain things very well.

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    • Posted

      I am going to beg my gp to let me try something else. I will tell him results of the scan and hopefully that will be enough. How do you find the medication you have been on? I may let my partner see my post actually at some point! Lol.

      my son just came in asking what I am doing for tea. I replied I am not and suggested he eat the rst of the huge takeaway he ordered last night that has just been left in the fridge! Don't think he was impressed! 

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  • Posted

    Hi sandy. I have found the Nefopam really effective. It blocks the pain so works quite well. The Naproxen is the anti inflammatory and I have to take Omeprazole to protect my stomach. I'm hoping my GP will refer me this week to a rheumatologist. I've had more blood tests and she wants to see the results of those first. Good for you not getting up and cooking. We forget sometimes that teenagers can look after themselves most of the time.
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    • Posted

      Thank you. I will ask my gp about those meds. I already have to take lansoprazole twice daily 30 mg so hopefully I would be ok with them.

      yes the kids can look after themselves, only priblem is my son orders takeaway to be delivered, costs a small fortune, then has no money to pay me keep! He knows I am struggling financially now too and cant afford my mortgage since being off sick, just reminded myself i have a firm from the bank I have to send off to go back on interest only. This is something elsee I find incredibly hard - I have managed to bring kids up on my own from the ages of 5/2, buy a nice bungalow, take them on good holidays, always managed my finances very well. Have always been good with money, but when there simply isnt enough to pay for things what do you do?! My outgoings are about £1700 including food, mortgage etc. my income now is about £1400, soon to go down to £1000. So the worry of that causes stress! ANyway, I am not going to moan anymore! Lol thanks for advice again!

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    • Posted

      I dont know how things work in the UK but here in the states we have disability through the government. You basically get a check once a month if you are unable to work due to some illness or disabling disease. I dont know how much people get i think it's done on a case by case basis and you have to prove that you are unable to work. Neverming I just found it:

      https://www.gov.uk/browse/disabilities/benefits

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    • Posted

      Thank you Phillygirl. I do get disability benefits now, unfortunately it doesnt cover my bills. I am hoping, however, that they will help towards my mortgage and have sent a form off to try to get this help. My bank is being silly with communications though, so it is taking a long time. Thank youfor the link x
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  • Posted

    So sorry to hear you're in so much pain sandy67! We all can relate!! I hope you can get into see your doctor sooner than later and get some relief. The meds they put you on for RA can take 3 months to start taking effect so make sure you can get some stronger pain medication to help you until those can start working. They can also give you cortisone injections too if it's really bad. I was put on Leflunomide for my RA and have been on it for 1 month. I haven't had any bad side effects from it and I think it actually has helped the foot pain just a tiny bit, but it's only been a month, so I'm getting hopeful that gradually all the pain will start to decrease. I feel it mostly in my hands, wrists, shoulders and knees.

    I also hope your family will start to help you out more. I am always so relieved to find out that I'm not just being a big baby and that the pain I feel is real. It's not your 'typical' arthritis and I think people just assume it's not as bad as we make it out to be, but the pain is so much more than joint pain; it's nerves and tissue and just all over awful. 

    We're here to support you so if you ever just need to vent, feel free! Here's hoping you get some speedy help. Keep us updated!

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    • Posted

      Thank you sue (making assumptions here! ). I am going to see gp today but not my own so not sure how that will go. My own is brilliant and really gives me the right support but he is away this week. I have just received my letter for next appt at rheumatologist its not till 9th jan so I am having another little cry here wondering how I am gonna cope. Shoulders getting worse and hips and groin too. I really wanted to go back to work and get my finances back on track but theres no way at the moment. I never slept till 7 this morning just lay awake all night trying, then I got a couple of hours broken sleep, how could I work even with that sleep pattern, without the pain. I know what you mean about feeling people think you are a big baby, thats how I feel too, yet I managed my pain  very well for about 16 years (I was housebound for 4 years following a spine and pelvis injury). I slowly went back to work and eventually was able to manage full time very well. Its only this last year to two years that things have become much worse and unbearable.

      thank you for your reply x

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  • Posted

    Hi again sandy. Ask your GP to expedite your rheumatology appointment. This means they can personally speak/write to the consultant requesting your appointment is brought forward. Just tell your GP everything you've written about in your posts. You can't carry on like this. I know just how much pain you will be in. I hardly slept last night but I have a good range of pain killers I can take.
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    • Posted

      Thanks Matron I will tell him today and see if he can do anything. I take oramorph too at times but even that doesnt work so as far as pain killers go I have the maximum I can take, without relief. I have been caught out in places away from home before where I could not move, once in Aldi. They had to call an ambulance. When they arrived they gave me gas and air. I can honestly say that is the only thing that has ever truly helped with my pain. It was marvellous! X
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