Problem with 13 year old

[amytz165]

My sisters 13 year old daughter has been diagnosed with hypermobility syndrome and the doctor said that for now when she is in pain take paracetamol (she is allergic to ibuprofen) and has been saying that the paracetamol dosent work at all (it works for her migraines not for her joint pain) and my sister is not really believing her and is sort of in denial about the whole thing altogether not sure what to do about her

[user1484226561]

I'd just leave it to your sister, its her daughter not yours.

[amytz165]

We live in a same household and we are really close and I look after her while sister is at wrk and its hard to see her in pain and not be able to do anything thats why ive posted x

[PickAChew]

I have HMS and paracetamol has limited effect on me. it might take the edge off, taken constantly, but it doesn't stop the burning and stabbing pains.

Is she allergice to all NSAIDS? At 13, she should be able to try other NSAIDS on prescrition, with monitoring. The evidence base around them isn't great from day to day, with HMS, but I find that they help me to cope wit the constant little twists and strains that are part of the package and which become increasingly likely and severe if you stop being active because of the constant twists and strains. Also with the fact that I've reached a somewhat zen like state with day to day pain but a mouth ulcer might send me right over the edge because I can't focus that out as well.

Sadly her migraines are probably part of te package - my most usual trigger is neck pain, in combination with hormone transitiions, but thankfully that doesn't trigger the seeing stars experience every single time.

[amytz165]

I will get sister to make her another gp appointment so they can try different nsaids I feel bad because the gps dont seem to know much about hms some of them for some reason dont really know what to do and shes said to me she feels like people are giving up on her

[PickAChew]

Mine had no clue, either. I was diagnosed at 40 and one wa s prepared to tell me that the amount of pain and restriscted mobility i was experiencing was normal for 40. Thankfully, a younger GP joined the practice and said no, you should not be living like this.

[Bensyster]

She might benefit from gait analysis and orthotics, maybe some physio to stretch and stabilise her muscles and joints - that worked for dd. Depends where she is feeling the pain. You might be able to get a referral to a specialist via her GP. Paracetamol is not an effective pain killer - it mostly works via placebo...maybe effective in 30% of people. I might as well take smarties!

[amytz165]

Yeah shes already had some physio and is very active and her muscles are quite strong so thats not the biggest worry, but she is very stiff, she cant sit with her legs straight out infront as just sitting like that is a bit painful. We will look into orthotics and stuff.

[Wolfiefan]

Paracetamol can be very effective but I think it has to be taken regularly (could be wrong!) so a one off dose isn't the best treatment.