I don't know what else to do

[Hannah221b]

I've had pain in my left side since early July, and my doctors initially thought it might be related to my pre-existing kidney disease, ADPKD, but they've given me scans and physical checks and they said that my kidney cysts shouldn't be putting any pressure on my back. So effectively, while I'm happy that my ADPKD isn't getting worse than expected, it means that there's no explanation at the moment for why the hell my side hurts and why things feel so difficult. I can't eat properly, and I get nauseous and anxious easily, and I have to take things slowly and take breaks when I get more acute pain.

A similar thing happened 2 years ago, where I was ill, couldn't eat, and had bad pain in the same side of my body for nearly 7 months straight. It was what led me to the initial diagnosis of ADPKD in the first place, but the pain went away of its own accord and I've no idea how or why. But it's worrying that it seems to have come back in full force and I don't want to get as bad as I was 2 years ago (I lost 20kg in a flash and it was terrible)

Do you have any advice for pushing for further investigations? Or going about getting pain management? I really don't want this to get in the way of me living my life and doing my work. The less I know about what's going on with me, the more anxious I am.

[Bananas5]

When you say you've had scans...does that include an MRI?

Maybe an xray of your lower back, hips etc might show if any damage there. It could be referred pain.

x

[Hannah221b in reply to Bananas5]

I've had ultrasounds and a CT scan, but if I remember correctly I don't think I've ever had an MRI scan. And because they can't feel anything wrong with my side or back, they don't want to do an X-ray as it doesn't seem to be a skeletal issue.

[Bananas5 in reply to Hannah221b]

Fair enough but as they can't find anything I would have thought MRI and Xray next.

Of course cost is always involved

x

[Hannah221b in reply to Bananas5]

It feels like because I'm not on the floor dying that they're putting it all on the backburner. Sure, there are definitely people worse off than me, but I'm really concerned that something serious could be going undetected for ages because I'm not yelling and screaming to get seen to. If I barely could handle having chronic pain for 7 months, I'd hate to think how long I could go on feeling like this without any clue of what's going on.

[Konagirl60 in reply to Hannah221b]

Pay for the MRI or X- rays out of pocket if you can. Insist they be done.

Have you had any surgeries where metal hardware was put inside you?

Curcumin may help with pain. If muscles are spasming, try magnesium bisglycinate. Epsom salts baths may help to.

[Barbola]

Did you consider seeing another doctor? An MRI will show if there is inflammation and show soft tissue better than an xray... you may be referred to a specialist after the MRI result, follow up on it. Dont wait and hope it will go away again.....it could be so many things, gallbladder, bladder infection, a torn muscle, a pinched nerve somewhere else, to name a few!

[Hannah221b in reply to Barbola]

I have a nephrology consultant, my GP and the other two doctors at my local surgery, and a Urology consultant was the one who referred me for this latest scan because of what another training doctor suggested when I was last in hospital for an emergency assessment.

My GP has worked wonders in terms of pushing for hospitals to get me my initial scans, and my Neprhology consultant was the one to get me the CT and second ultrasound.

I've basically been told to take paracetamol. And when the trainee doctor at my hospital gave me anti-inflammatories, my GP told me to stop taking them because NSAIDs negatively impact upon kidney function. I'm kind of caught between a rock and a hard place here. I've taken courses of co-codamol, ibuprofen, diclofenac, and paracetamol over the last 3 months every so often and no-one wants to give me anything stronger, or look into other potential problems that this could be. They're just 'oh take the pain meds it'll sort itself out.'

[Barbola in reply to Hannah221b]

Your nephrologist gave u good advice. No Nsaid.....this means non steroid anti inflammatory meds. One of those gave me kidney failure and chronic kidney disease stage 3.....it was Meloxicam.

Make sure all your doctors know your history and what you are taking. Ibuprofen is a NSAID....no no!

Paracetamol does nothing for any of my pains! I would not take anything till i knew what it is that causes the pain. Your GP hopefully will push for a solution....

[Hannah221b in reply to Barbola]

I'll wait a while until he receives my scan results and then get in touch ASAP to see what more can be done. I've got an ADPKD review in November too, but if this isn't kidney related at all, I'd definitely like to have help from my GP to speed along any other investigations into what the hell is going on with me.

[Marz21]

Hi, I have recurring pain in my right side. It started up again about 10 months ago and prior to that it was as bad a few years ago and just a little sensitive at times inbetween. Is it around lower rib area? I have had bloods/urine tests, ultra sound and ct scans to rule out anything serious with bladder/kidney/gall bladder. It started back up this time after a UTI and my doctor thought kidney stones. A&E where I landed up last December found blood in urine but ultra sound found no sign of kidney stone. Last time the side pain was diagnosed as costochondritis. I have a form of Rheumatoid arthritis related to my Ulcerative Colitis so short of anything obvious in scans they have decided a kidney stone could have passed and just a coincidence with side pain which is probably the costochondritis again! (inflammation of rib cartilage)

Hope you get some answers x