Having a bad day!

I was diagnosed with sle, Discoid lupus, raynurds disease and rheumatoid arthritis 5 weeks ago.I feel so depressed most days, i have a 4 month old baby and a 2 year old to contend with and most days its a struggle to get out of bed. I have been put on hydrochloroquine and so far feel no better, in fact worse as I now feel sick all the time and have stomach pain! I called my Rhemo as my steriod injection ran out 2 weeks ago and I have felt worse since then but they still have not replied to me about having another one! Although all my family and friends have been great, they can never understand how I feel and I sometimes feel like they think I am putting it on. Today is not a good day, woken up my joints are so swollen I want to stay in bed, the only thing that as got me up is my children.

Sorry for the rant

6 Replies

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  • Oh you poor thing , it's hard enough with young children without being so unwell. Why don't you see if there is any help out there. What about asking your health visitor as a start. We have a group locally called homestart and I am pretty sure they are all over the place. Volunteers come in and help out. Socail services may also in your area be able to give you a family support worker.You can't do this on your own and you shouldn't be embarrassed to ask ! Lupus UK also do a letter called Dear friend which you can give out to friends and family which gives them advice on how you feel and how they can help. Take care and try and keep positive x

  • Just remembered I have this letter in word . If you send me your email address, i'll forward it to you. There is nowhere to attach files in this sites email messaging .

  • Been thre done that, borining but true, when you hit rock bottom the children seem to be even more demanding. I had a Mother who would not believe that her son could possibally be ill and would ring me to come round to do various jobs, it infurareated my wife, there was a lot of selfishness on my side of the family.

    Do you have a Social Worker. If not when you fell better go and get one, also get an occupational treipist. You would be spuprised the diffrence they can make to your life.

    Do you have friend close by, if so use them. you can alway repay the favovor when you are well.

    A lot of Rhemo's will give you one steroid injection and thats it. check to see if yours is one of them, you may get your GP to to take over. That sound's as if you need a knee op, try and get an appointment with the Pain clinic at your local hospital.

    I don't think all of your family think you are putting it on may be a few root out the one's you think are puting it on and move on to the ones who believe you.

    Do thake lots of care, and let me know how you are getting on, With Lupus you have to survive, not worry about who likes you.

    Ken.

  • Hi I am in a very similar boat have 4 kids oldest 7 years youngest 6 months. I was first referred to the rheumatologist after the birth of my 2nd child. I was put on hydroxy as well and for the first few months it didn't do much but after that the tummy troubles settled and it did make a real difference mostly with the joint pain but also with the fatigue. I got help from my health visitor which lead to me getting a home start volunteer who came in a couple of times a week and a childminder for my older ones paid for with the children in need funding through the social work department. I also got a cleaner in once a week to do the heavy stuff like hovering this did cost a bit but it really helped.

    I hope you start to feel better and your flare calms itself down soon. If you need to rant it is normal and ok and just take life a little bit at a time. If you want a chat just shout you are not alone and we all know what you are going through. Gentle hugs :-)

  • Hi, make sure you get appropriate treatment by pestering (politely of course) the rheumy or his/her secretary or nurse. Tell family in detail how you feel. Get help and put yourself first whenever you can. You are having to bear too much whilst you are so ill. Do not be afraid of asserting your needs. Your body is under a lot of stress it seems to me.

    Hope things resolve or improve very soon.

  • Hi Joybell, sorry to hear you have just been diagnosed with Lupus & Fibromyalgia, I have both of these also S/S. Try not to let the diagnosis get you down in a way it is a positive thing because now people will believe and understand a little more when you are not feeling well. I bet if you think back you haven't felt right for a long time. My SLE came on more severly when I had my third child even though it took another 6yrs to diagnose and even then only when I paid privately. It take 6mths for the Plaquenil another name for the(hydrochloroquine) to get into your system properly and it will relieve pain issues to some degree. From there if you do not improve which I did for a long while there are other medication that can help. Try and rest when you can not easy with a young baby but forget house work and trying to be the perfect mom and look after yourself. I wish 29 yrs ago someone had explained this to me. Rest is so important someone with this illness. Good luck and try and keep positive.

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