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Pain ?sacroiliac joint area

anniemax1968

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

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

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

Rachel_Scope

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

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.

anniemax1968

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

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

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

Dendoo

hi I’m a long time sufferer of sacroiliac joint pain ! Due to other symptoms they thought I had ankylosing spondylitis. Had an mri and because no damage was showing. I was left to it. To cut along story short it’s a lot worse now and I know after a lot of years looking at stuff myself it’s not forced to show damage on mri ! In ladies it presents differently to men. It was once thought of as a man’s disease. And sadly some drs stoll think it is! I’m back on the radar after years of it along with other stuff till I’ve burnt myself out with the stress of unmanaged long term pain anxiety and low mood . I also have wide spread osteo arthritis, fibro. I’ve paid for sessions of chiro over years and it made me worse so be careful . I know there’s other reasons for sacroiliac pain but just thought I’d share mine x

neil12345

I have similar pain 3 years. Tried co codamol. Tramadol. Naproxen. Amitriptyline. And recently last two weeks on medical cannabis. None has worked.