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For nearly a year now my son who is 16 has had pain between the lower rib and the hip bones. It has gradually got worse and worse, to the point now where he misses 2-3 days of school a week with constant pain and pain spikes.
Xrays, ultrasounds, all reveal nothing there is no bone or organ involvement. The area is not tender to touch nor is there evidence of muscle facia tightening. The pain is aggravated by movement, general walking around, day to day life. Doctors here in Melbourne Australia who have unfortunately very little knowledge of EDS are scratching their heads on how to help him. The usual over the counter pain meds have no affect on the pain, have tried Tramadol but it also has no affect and makes him nauseous, and he has been put on an anti-depressant Endep however again I have seen no improvement in the pain he is suffering. A recent visit to a pain management clinic has resulted in no drugs but will be looking at OT, physio and psychological control. That’s all very well however I am not convinced they know what is going on as the cause of the pain remains a mystery to them.
He is currently doing clinical pilates to strengthen his core as we have noticed he is not using the correct muscles to hold himself upright.
We have been very lucky, he has not had any dislocations or broken bones, it appears his vascular system is not impaired, and until puberty he has not had that many issues with his EDS, so he has been very very lucky with regards to pain, now however, it seems growth spurts and hormones are contributing to this mysterious pain that is bilateral and increasingly decreasing his ability to function normally day to day.
My questions are:
A> Do you know of anyone else suffering from this mysterious pain in the flank with no discernable cause?
B> Are you aware of any doctors in Melbourne Australia with a good working knowledge of EDS that perhaps you could make me aware of?
C> I know that drugs seem to work the opposite to how they should for him, and for many EDS patients, but are there any that I could perhaps mention to our paediatrician that could help with the pain control until the other therapies kick in?As with many parents and suffers of EDS I am getting increasingly frustrated that nothing seems to help him and drs are just referring on to others rather than taking on the issue and helping my son with more than just platitudes and words.
Thanks in advance
DiCant help with the Australia referrals. I get a good bit of my pain suppressed from an old school med, amitriptyline. I also take Mobic for joint pain/osteoarthritis. I found Tramadol to be useless. Hydrocodone does work for me though for break through pain I can’t tolerate.
Flank pain could be referred pain. Does he have sacroiliac issues? Lumbar back issues? Have gastro issues like gluten sensitivity/Celiac, food allergies, IBS, gastritis, delayed stomach emptying, etc? Also, I had flank pain when I still had my gallbladder. Just a thought.
Anyway, welcome.
Have they checked for “floating” kidney? They have to do supine and standing imaging to compare, to see if the kidney(s) drop down when standing ( > 5 cm of change). X-ray with contrast works for the imaging. This can cause significant pain and is very difficult to DX because no one thinks about it. I only know about it because my Dr. is thinking it might be an issue for me (I had my x-rays done last week). Look it up online and see if the symptoms match up. From what I have read the surgery to treat it (put the kidneys back in place and keep them there) is pretty easy and has great results. It seems to me it would totally be a connective tissue problem.
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