Hi all

Just joined.wanted to say hello and perhaps get some support from yall.so im a 29y old mum of 2 finally after weeks in pains-post pregnancy got diagnosed with RA.got pred.15 for week n now on 10.I'm breastfeeding as wasn't,well still not able to make up bottles,the specialist didn't sound very supportive on the first appointment. Husband on unpaid leave from work atm as I'm so bad some days I can't look after myself,not mentioning the kiddos.having podiatrist tomorrow as feet ever so sore.

And the Rheumatologist on Friday again,not sure what to expect as theres no big change in symptoms especially in the morning we are thinking of husband staying home permanently but scared we won't cope financially,never been out of work bfore. And Dont know if there's any help there..... Feeling like failure I am,don't know where to start with this huge change in our life's.I will be appreciated if someone could share some wisdom re all this horrible RA,any support will be a huge help thanks L.

9 Replies

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  • Hello and welcome to the site. Im so sorry for what you and your family are going through. I was diagnosed with RA in January 2013 and still having my share of problems. I was exactly like you describe when mine first started with the pain being really bad and finding it very difficult to even move.

    Dont give up I promise you things will get better for you once your medication gets sorted and they find out what suits your need.

    Hugs and best wishes

    Trish x

  • Hi and welcome from me too

    I'm so sorry you are going through this, it's so scary and horrible when you first get diagnosed, but as trish said, there are some really effective drugs these days and once you find a regime that suits you you will be loads better. This is most likely the worst time for you right now.....it certainly was for me!

    For now I would say rope in all the help and support you can, family, friends, your gp/ health visitor should be able to direct you to some help at home for this difficult time.

    I would say don't let your h give up his job, maybe see if he can get some more leave instead.... You will hopefully be sooooo much better soon and then may regret him having given up his job/ income.

    Ifirst you decide to read up online as we all do, then stick to sites such as NRAS ( here)

    You can go to the Link from the communities page.....the info is straightforward and up to date. I got scared too reading some of the posts on here until I realised that mostly people only post on here when they have problems. There are lots of people who get on well with their drugs and get on with their lives.

    The rheumatologist will probably want to start you on Dmard treatment.....and will hopefully give you a rheumy nurse contact number......someone you can call with any worries you have. My consultant is not very supportive either, just very "matter of fact" but I mostly see the rheumy nurses who are great and very supportive and I feel as long as he gets me the best treatment for me, then I'm ok with that. Hopefully you will find the same for you.

    There's loads of info on the dmards on Nras and loads of posts on here from members sharing their concerns/ worries......don't be afraid to ask away, I'm always amazed that whatever the question, someone here seems to have some experience/ words of wisdom.

    Good luck with it all......stay positve, things will get better x

  • Hiya

    Hang on in there it will improve for u. Mine cenon after havin my son and I couldn't pick him up and felt useless. Once u are on the right medication things will impove xx

  • I was 24 when ok had my first daughter and got RA two weeks after! I had physio make inersole for my shoes so I could stand and walk, I was a Hairdresser and the exact same circumstances as you, I had another child at 29.I was on a variety of meds which slowly helped with the pain and the disease! I am 53 worked all my life since contracting the disease despite having a chronic dose! I walked daily, got a alternative Dr, Rhumatologist, immunologist, good diet gluten and dairy free, determination, try to stay stress free, fight off the depression read Louise hay you can heal your life. I changed career at 40 to a office job and have just reduced to a 4 day week! Outside paid work I have remained very active and in community work, gardening tree planting exercising and a lit of hard manual work! Your determinaction and positive thinking will give you a better quality of life and happy family! If you have a supportive husband you are half way there! Good luck love, fight fir high-quality if life! My girls are 26 and 29 now, they have lived with the disease all there life and they are my backbone! My baby is training to be a nurse now!

  • You have had some sound advice, and will probably get more, but I just wanted to add my moral support. I escaped this disease until I was 70, and can barely imagine how dreadful it must be at your age, with young children. Do continue to use this forum, as well the NRAS helpline. I found that a God send in the early days. All good wishes J

  • Welcome to the site, you will find much helpful advice and support.

    Please give yourself some time with your new meds, they can sometimes take a bit to work, and ask for some pain control Meds in the meantime. I am hoping for you, once your condition is more under control your feet can be managed.

    Before I got onto Methotrexate every step I took was pure torture, I also have a job where I am on my feet all day. Anti- inflamatories also help.

    I know its not easy with having little ones and job absences but please know there are medications out there that will help you manage.

    It takes a lot of patience at the beginning, read everything you can and learn everything you can about your disease. I know it hard to even accept you have a disease. The more you know about it, the more power you have. Koodoos today your husband for being so supportive!

  • Hi Lidsy

    Sorry to hear about your recent diagnosis and it does sound like you are struggling at the moment but you will find lots of support both on this site and through NRAS. Please do have a look at our website nras.org.uk and our newly diagnosed booklet: nras.org.uk/publications/ne... (all of our publications are free of charge).

    As Jora said above, if you want to talk to our NRAS Helpline the free phone number is 0800 298 7650 and it is open 9.30am to 4.30pm. They have a wealth of experience of speaking to newly diagnosed patients so please do consider giving them a call. They may also be able to put you in touch with one of our trained telephone volunteers (all of whom have RA) who perhaps has young children too and can give you some hints/tips.

    With best wishes

    Emma - NRAS

  • Hello and welcome. I'm a new diagnosis, too, and though my health issues differ, I understand feeling like a failure. We aren't, it's just this pesky disease - no different than getting hurt in an accident or any other of a million random things that happen. Hope is slippery, and sometimes hard to hold onto, but if you can, cling to it. I've only been on the site for a little while, and I've already found tons of support and kindness. I find that when hope slips through my fingers, kindness helps me find it again.

  • Hi Lidsy, I've been where you are right now and it does feel horrendous and that's allowed, but please ask for the help you need from whoever is best placed to help. You are not a failure in any sense, you have two undoubtedly beautiful children and by the sounds of it a supportive husband. This is not just your fight, people are more than happy to help out if you can be brave enough to ask, think how good you felt when you helped someone out...

    I've done the commando crawling to feed my child in the middle of the night and you find ways to do what's important to you, they may not be conventional or even thought of but whatever works for you & yours.

    Your Dmard options will be limited while you're feeding but if you want to continue, stay strong and true to yourself. That said, be honest with your rheumy team about your feelings as well as your symptoms. It will get better, but may take some time. Try the NRAS helpline or see if your rheumy nurse can suggest someone local to talk to. You can do this.

    Take care, and please be kind to yourself.

    HCmum

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