Having a bad few days!

Hi, my daughter, Molly, is really suffering, especially today. She was sent home from school today as both her knees were having spasms/stabbing pains and her hands were hurting (she hasn't had the hand pain before). Quite concerned about this :(

She is seeing the Physio on Wednesday for more physiotherapy, hopefully this won't hurt her too much!!!!.

I feel so useless because there's nothing I can do for her apart from giving her tablets to help the pain.

She's being so brave.

8 Replies

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  • Oh dear. You don't talk about her treatment, but there are so many treatments she can have. It's horrible seeing your children in pain. Let us know how she's getting on. I'm sure your support and love will be a lifeline for her

    Xx cathie

  • Hi ditto to what Cathie is saying. For most on here we are struggling to come to terms with our own loss of health through RA but it must be ten times worse watching your child struggle with this disease and you have my complete sympathy and all the maternal hugs I can muster (a lot - I have 3 teenage sons).

    Just a thought - if you need more support from people in the same predicament as yourself the Arthritis Care site has a "My child has Arthritis" forum on it where other parents in the same situation as yourself share info and support each other - just in case that would be somewhere additional you might want to go for more dedicated support for parents in you situation too.

    Best of luck with the next few days - I do hope her hands aren't flaring - it will make school that much harder with all the writing etc but as Cathie says she should be getting proper treatment for the pain? TTx

  • It must be awful for you, especially trying to stay strong for her when no doubt you want to howl yourself. Have you got any further with getting a specialist appointment yet? Do keep hassling to try to get one as soon as you can as knowing a diagnosis might help get her onto more effective treatment. Ice packs/heat pads can help a bit inbetween the pain killers. Polly

  • Hi Becsy, I'm so sorry your daughter is going through this at such a young age, it's difficult enough for us adults and we understand what's happening.

    As mother of a child in pain it must be horrendous for you. I still remember how difficult is was when no one would listen to me and getting the help/support my son needed (I was classed as an over anxious mum!). It eventually turned out he needed surgery.

    I agree with everything the others have said, your daughter must rest. Give her the max dosage of pain killers and heat/cold packs are usually quite soothing. I find painkillers then soaking in a hot bath helps ease my spine, SI joints and legs so I can then do some gentle exercise/stretches.

    Pester your doctor and if you don't get the support your daughter needs, I'd take her to A&E as many times as needed to get the referrals, it's important for her future and to prevent damage she's started on some sort of medication.

    But you also have to come to terms with the fact your daughter may have this awful condition, remember to get the support you need to cope with the feelings of uselessness.

    Please keep us updated and remember to care for and fight for her you have to look after yourself too.

    Stay strong.

    Beth xx

  • Becsy

    I am so sorry your daughter is going through so much. How old is she? It is hard seeing someone you love so much going through so much pain.

    Keep us updated on her progress and investigate her hands Can you go to OT they gave me some pressure gloves which are not too tight. You can wear these and she can still do her work. The are finger less and help to spread and stop the throbbibg. I use them for tying and driving,

    hugs and kisses to you and keep your chin up

    susanh

  • That sounds awful for you all. I often think when I have poorly children " wish I could have it for them!!

    The NRAS helpline is very good with advice if you need to talk to someone and can give you advice to ask for what she needs. Hope it all goes well and you both feel better soon. Thinking of you Axx

  • Hi

    Hope that you are soon able to get the help you need for your daughter as it must be awful to have to stand by and watch her in such pain. I would echo the suggestion made by Tilda that you contact the AC forum and get some support there and possibly also to contact the CCAA - you can visit their website on ccaa.org.uk/ Telephone: +44 (0)1905 745 595 but mainly that you persist/pester to get some help with her pain control and urge your GP to hurry up the referral.

    Best wishes

    Lorraine

  • Hi Lorraine, thanks for your comments.

    We are members of the CCAA who seem to provide a lot of support and advice.

    I have been pestering the Doctor's secretary asking about the referral but don't seem to be getting anywhere fast! The physio seems to be more helpful and is doing her best to find out when Molly will be referred.

    Today has been a good day for Molly - she managed a whole day at school for the first time in 10 days!! She has managed to cope with the pain today and she's had a smile on her face too :)

    Let's hope she has a few more days like today !!

    Thanks x

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