Newly Diagnosed at 29

Hi everyone,

I have recently been diagnosed as early stage RA, have been in excruciating pain with my knees mainly during the night which has caused huge problems as I've recently had a child and getting up to do night feeds has been extremely painful!

Over the last week I have really suffered with fatigue and my joints being very painful.

I have had the steroid injection and I'm on hydroxychloroquine which I have been taking for nearly a month, unfortunately the injection didn't do anything so I'm hoping the medication will kick in soon. I also started taking cod liver oil and glucosamine as read this can sometimes help.

I wondered what other experiences people were having, trying not to get down and despondent but been a very hard few weeks.

18 Replies

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  • Hello

    Be patient with the medications, many can take a period of time before they work. You seem to be trying all the right things

    You know where we are if you have problems and concerns

    BOB

  • It might be worth seeing your GP about some pain relief for night time - even if just to tide you over till the hydroxy takes effect. (Probably another couple of months.) Not sleeping just makes everything worse.

  • I have sopadol only issue is i'm breastfeeding so I don't love taking them but cant take 2 as need to be alert for night feeds.

  • Check with your pharmacist, Health Visitor or GP but I believe that the usual advice is that ibuprofen is OK when breastfeeding. (So long as you don't have other reasons not to take it, like asthma & stomach ulcers.)

  • I have PsA they think, rheumatoid type as symetrical polyarthritis with spondylitis neck, and due to start mtx soon, my knees kill me in the night too, they feel on fire and i too got no relief really from steroid injection. Are you taking nsaids? I had naproxen then meloxicam and take over counter cocodamol 4 x day on top, and still in considerable pain, i have phoned surgery today to ask for stronger pain relief as i am really struggling at work as not sleeping. Also have an oat bag to microwave and tried ralgex, just to change the pain.... My favourite thing for my hands is super powerful handdryers in public toilets but not sure i could get my knee high enough :).... Seriously though, you need your rest so take plenty pain relief and sleep when the wee one sleeps in day too, you should be enjoying your time with your wee baby, its horrible to be so tired and in pain - your gp will give you something for sure.

  • Haha! I'm lucky enough to have a hot tub so I find the hot water with the jets on really helps, plus little man loves it too so that eases it slightly. Have some pain meds but due to breastfeeding have to be careful. Trying to wean him currently at 4 months but the lil monkey point blank refuses a bottle :-)

    You have it all going on, trying to be positive and try as many things until meds kick in. Like you say it's just hard when your knackered!!

  • If the heat of the drier helped maybe that is your answer. Heat. Try a hot water bottle it stays hot longer than wheat bags. You can get heat patches that either stick on your clothes where the pain is or the others to stick on your skin. I have used both and both helped. it is just your choice. I hope you get relief soon.

  • Hiya Laura & welcome. Where you are now is probably the worst it will be, the start of treatment. Your HCQ hasn't reached it's potential yet plus you have the added fatigue-making situation of having a baby who needs your care & attention. Add in that you're limited to what you can take as regular pain relief & it must be difficult. It may be worth trying topical creams, you Rheumy nurse or GP should be able to advise. It won't be easy, no point sugar coating it but but you'll get there.

    Do you have a good support network around you? Obviously they won't be there for the night feeds, you alone can do that if he's refusing bottles at the mo but it won't be forever so try to focus on that for the time being. Please don't think you're failing him if you ask someone, mum, sister, friend whoever you trust to take charge the odd day or even a morning or afternoon here & there so you can have a few hours proper sleep. It might be worth mentioning to those closest to you to have a look through the NRAS website nras.orgu.uk so they're aware what's happening to you & why it's more than new born tiredness you're experiencing. You may find it helpful too of course, lots of useful information not there. Plus there's the helpline, free from a landline 0800 298 7650.

    My Rheumy prefers I take fish oil rather than cod liver oil so I take one with Omega 3 as I'm not so keen on foods with the higher natural source, fish in particular & I don't take in enough from the lower source veg & there are only so many nuts you can eat in a day! Glucosamine we really need to take in high doses to have effect on our cartilage & so our joints & could increase possible side effects which may be misinterpreted as being caused by the meds. Have you asked your Rheumy which supplements would be beneficial? We should be careful not to take anything which may interact with our meds. Also give a wide berth to those which suggest that they boost our immune system as we're taking meds to do just the opposite, calm our over active system.

    I hope you enjoy being here & if you have any questions you need answering ask away, we're a wealth of information between us. There are a few new mums with littlies as well so hopefully some will be along soon to give their experiences & tips having RD & a baby. :)

    Beautiful pic by the way!

  • Hello, the first few months to a year of diagnosis are so difficult, it's a lot to take in and the meds can take awhile to work. Just stick with it, keep talking to your Ra team and to us if you feel down. It's a bit of a battle but one that can be fought :) xx

  • I know exactly how you feel as my RA kicked in after my second child and night feeds/fatigue were terrible, it also seemed to affect my knees so I walked down stairs like an 80 year old. Not helped by my husband breaking his leg at the same time so he couldn't walk either!! I found the steroid injections amazing short term. I gave up breast feeding to get some drugs into me, a combo of methotrexate, sulfasalazine and hydroxichloroquinine works for me. 6 years on I feel as good as normal and no longer get the fatigue/pain of the early onset. I think it took a few months for all the meds to kick in. I would suggest getting your vitamin d checked as if I feel tired, my levels are normally down and iron tablets sort me out immediately. You could prob try sulfasalazine and diclofenac as think they are ok whilst breast feeding. Good luck and don't worry it will get better.

  • just want to say good luck. My hands and feet started hurting 6 weeks after I gave birth last year, and I've been on methotrexate for 9 months so far. To be honest, it hasn't made any difference so far, and I'm still squabbling with the rheumatologists over whether I really have it (as opposed to all the other joint type problems you can get after having a baby, usually caused by hormonal issues that the scientists don't really understand yet).

    There were some low times, like when my hands hurt too much to be able to lift my baby out of his cot in the mornings. But you are not alone in your situation and, as I understand, if you are ever going to get RA, now is the time to do so as they are now far more advanced in their understanding of how to treat the disease than they used to be, and prognoses are improving if they catch you early.

    Make sure you get your thyroid function checked too. That causes alot of problems for women post birth and can also cause joint problems. Ok, and I also had low vit d levels so am on supplementation.

  • Hi Cornish,

    Thank you :-) my thyroid is checked and fine. Yeah I completely get the pain of not being able to lift little on as I was lucky enough to have a crib attached to the bed as at one point I could barely get up as my knees hurt so badly, it comes to something when you lay at night weighing up if wetting the bed is really that bad ;-) haha!!

    They only haven't put me on methotrexate because of the breastfeeding but I know all of them take time to work. Have had to stop taking the solpadol this morning as that gave me headaches and dizzyness so stick with paracetamol and the gel the doc prescribed. I already feel a bit better in myself.

    Hope all gets better with you too!!

  • Thanks everyone, sometimes it just really helps to hear from other people in the same boat, glad I found the site :-)

  • I have been diagnosed in jan 2015 been on mxt and pred for 6mths. The first few months is the hardest especially trying to work out what sort of meds and pain relief work for you. Iam also 29 and really struggling with the fact i cant do some things anymore its very hard to get your head around it sometimes. I found compression braces really helped with keeping the joint warm and supported my wrists are the worst.

    In regards to your little baby snd weaning. Its hard if you get some puree apples and dip the tip of bottle in apples before you let baby suck on bottle. They like the taste of the apple and suck then they realise the more they suck they get milk and they keep going. I did this when weaning all 3 of my kids around 4mths aswell works a treat.

  • Thanks, i'll give that a go we tried honey but he ate the honey and spat the milk out :-D

  • I tried honey on recommemdation from a midwife. Then discovered honey id actually really bad to give kids under 12mths. It has a bacteria in it that gives them really bad stomach pains and diahoreah. So just be carefull honey isnt the best for them 😊

  • Hiya, I'm a bit late coming in here and you've already had some wonderful advice. All I can offer you is some sympathy and empathy, I was diagnosed when daughter was 10 weeks old.

    When we changed to bottle feeds my daughter was satisfied with one feed a night which really helped. I'd have the bottle in warmer all ready to go beside bed, it was one of these heats in 30secs! I also relaxed with night time nappy changes (unless stinky!) and she survived! :). Having the cot right beside me was helpful to pull myself up. I found couple of baby grows with zips which were great (I'd use teeth to change)

    Have you managed to find a pram you can cope with?

    You say you've been diagnosed early, I've read studies that say you have a much better chance of getting it under control, mine was aggressive but caught early made all the difference!

    Wishing you lots of luck x

  • Hi Lou,

    So sorry to hear that you 1. Have a diagnosis of RA and 2. Are suffering so badly with your knees.

    I also have RA since 26 undiagnosed for 2 years. Before any medication the things that really helped with pain for me were acupuncture, have a read on arthritisuk website it helps with pain, fatigue and medication side effects. I also had ankle, hand and knee supports which kept joints warm, what about over the knee socks to keep knees warm too, an electric blanket as well?

    I realise none of the above options are the most attractive things :)

    I also did a tiredness diary which is available on arthritisuk website to see if I could cut out non priority activities, sometimes we have to accept our limitations to prioritise more important things.

    Talking of prioritising, how about expressing milk for nighttime and letting someone else get up, whilst you are finding it hard to sleep because of pain, arthritis pain is made worse by disturbed sleep so actually having a full night sleep may really help you.

    An occupational therapist can help with sleep hygiene as they call it (basically getting a good nights sleep).

    Be religious abou taking pain meds, especially NSAIDs.

    Coconut oil is very anti inflammatory which I rub on joins and also cook with to get into system

    I too had no luck with steroid injections, but did with proper rest, fatigue management from an OT, warmth and gentle exerciise such as stretching or gardening.

    You will find your triggers for pain, they could be tiredness, they could be over activity, or stress.

    Good luck,

    Warm wishes,

    Terri

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