Pain ?sacroiliac joint area

anniemax1968
anniemax1968 Community member Posts: 21 Contributor
edited September 10 in Neurological impairments and pain

Hi just wondered if anyone experiences this. I have persistent pain in area of sacroiliac joint on right side going on for about a year now. Feels like it’s coming from deep within the buttock it’s does not radiate down the leg. I have one leg shorter than other and history of previous hip reconstruction surgeries 12 years ago. Some day are worse than others. It’s worse on sitting I’m still waiting on my orthopaedic appointment. Does anyone have any experience of this. I have spastic diplegia and walk with a Kaye walker Thanks x

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  • Rachel_Scope
    Rachel_Scope Posts: 1,059 Online Community Coordinator

    Hi @anniemax1968. Sorry you haven't had a reply to your post. Sorry you're in so much pain. Do you have a date for your orthopaedic appointment? Do you feel your doctor is managing your pain well?

  • anniemax1968
    anniemax1968 Community member Posts: 21 Contributor

    yeah I know hardly anyone replies on here any more. My appointment is at the end of October and all I take is naproxen and paracetamol. Drs are reluctant to put me on stronger meds as I drive and I’m young thanks

  • vikki66
    vikki66 Posts: 199 Connected

    @anniemax1968

    Hiya, I didn’t know that’s what it was called until I went to a chiropractor (GP doesn’t think to let you know what conditions you have🤷‍♂️). And nobody thought to tell me that one of my legs was a bit shorter either.


    Sorry to hear you’re in a lot of pain.

    Have you ever tried a chiropractor for this? Obviously people can’t afford to go all the time, but at times when I’ve not been able to bear the pain I go, and you do get a bit of relief for a day or two (which is not nothing).

    Same as you said, docs don’t want to give you anything that might actually relieve your pain (since they all watched Dopesick).

    I take cbd oil, and sometimes I get the CBD patches (they’re quite big).
    Mine is ok at moment, well only because my neck is torturing me this last week.

  • Rachel_Scope
    Rachel_Scope Posts: 1,059 Online Community Coordinator

    Hi @anniemax1968. Does the Dr understand how much you're suffering? I'd hope that there was something stronger they could put you on, even for a short time until you have your orthopaedic appointment. I have chronic pain and found naproxen didn't work for me. I now use paracetamol and codeine which I find better. Have you tried alternatives to find out what works for you?

  • anniemax1968
    anniemax1968 Community member Posts: 21 Contributor

    hi vikki I haven’t tried a chiropractor but might be something to think about! I also haven’t had physio in 5 years. Did the doctors get to the bottom of your pain ie did they do X-rays or an mri. I had hip X-ray recently which was normal so I’m assuming my pain is muscular or coming from lower back/spine. I’ve got one leg shorter than the other and I had two hip reconstructions when I was a child.

    Hi Rachel I have tried cocodamol which didn’t help and just made me constipated. No stronger meds have been mentioned due to side effects and the fact I’m so young.

  • vikki66
    vikki66 Posts: 199 Connected

    GP didn’t seem to care much. It was somebody who’d been to the chiropractor who recommended him when I was hobbling around.

    If I could afford it I’d go every week, I felt like it loosened me off, which eased the pain for a bit, not being so tensed when I was overwhelmed by pain meant I could relax a bit, so got a bit more sleep and didn’t feel like I was losing my mind. It didn’t fix the problem long-term, but I did feel better when I was going regularly.

  • anniemax1968
    anniemax1968 Community member Posts: 21 Contributor

    hi vikki no the gps don’t care I had to hound them for a referral and even then they sent one for my knee when it should have been hip. I’ve been waiting for almost 3 years to see orthopaedics. You should try and get a referral to see what’s going on. I’m not sure what they will be able to

    Do for me to be honest but might give me a clue as to what’s going on with my body. You have so much input as a child but as an adult with cerebral palsy no one seems to care x

  • Richard_Scope
    Richard_Scope Posts: 3,638 Cerebral Palsy Network

    Hi @anniemax1968

    Have you spoken to your G.P. about trailing Baclofen? Baclofen helps relax the muscles and reduce spasms, particularly around joints.

    I'm not sure where in the UK you are, but you can also get your G.P. to refer you to the Cerebral Palsy Service at UCLH. They are a multi-disciplinary team that will look at how your CP has changed and what you need now.

    Scope has done research on Ageing with CP this is an animation that might be helpful for you to show your G.P.

  • anniemax1968
    anniemax1968 Community member Posts: 21 Contributor

    hi Richard thanks for that. I have been on baclofen since I was a teenager quite a low dose of 20mg. I find it makes me tired and I drive so unsure about increasing the dose. I’m from the north so wouldn’t be able to travel to London but thanks anyway. I’ll have a wee look at aging with cerebral palsy x

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