bonepain

My name is Jordan and today I had a really scary weird experience with my body one that I have never had before. I have EDS, Fibromyalgia, Endometriosis, IBS, and Interstitial cystitis to name a few. Today I ended up in the ER due to a new pain in my bones. My fibromyalgia normally hangs out in my bone but today something felt different and very very wrong. Today my bones felt like my bones where made of hot lead cement. It starts at my sacrum and then radiates out down then bones in my legs anand and up my spine but only as high as my waist and no higher. It get a million times worse when i stand and walk. The ER did blood tests, urine tests and a CT scan and all of those came back normal, so they discharged me with no answers and a small amount of pain relief. The ER doctor theorized that it may be sacral inflammation but that was a big maybe. I am desperately looking for any help that yall can offer and or any ideas on where to go from here. Please help and thank you!!

Big hugs to those out there facing this, whether you are just at the start of your journey or years in like myself, with still nothing but a load of “all clear”s from many different departments, both NHS and private.
I’ve fought this for what, four years now; doctors sigh when I recount my symptoms, my fiancé rolls his eyes when I tell him about my pain. My family was always too self absorbed to pitch in, they and my friends hastily dropping away as they realised that I couldn’t do things for them anymore, fit into their schedules as readily, or maintain a permanent positive outlook in the face of everything. Eyeing me sideways as I shift in pain or decline an activity far beyond my reach, some even outright claiming me to be a fraud behind my back.
It’s not all intangible though, and this is the kicker - for all the invisible aches and pains, the lack of energy that is so hard to convey, the huge gulf that lies where my support network should be, there are actual physical signs, red flags that I feel have been completely ignored; night sweats, recurring fevers, lymph nodes increasing in size, density and number all over my body, an unknown, slow-growing lesion in my spinal cord and now a bone in my shoulder growing abnormally, first raised to my GP in late February. Still no diagnosis.
All other symptoms aside (but should surely now be fully included?), with this enlarged bone, should I not have been put on a cancer pathway by now?
There have been so many delays - GP told me to wait for the initial X-ray appt (which never came) then was told when I checked 2wks later I should’ve rang the hospital to book it. After finally getting the X-ray and chasing the report a week or two later, it turns out the doc only asked them to look for a “floating rib” rather than the bone enlargement, so it came back clear. Another week of them looking at it again confirmed “deformity” and further imaging was requested. After another 2 weeks of nothing I contact them to find that it had been rejected as not marked urgent. Doc marks it urgent, I phone to book only to find they’ve marked me down for the wrong shoulder and they need to confirm the right one before imaging. A total of five weeks plus delay on top of several years shouldn’t mean much at this point, but now I’m actually really very scared. This new thing hurts in a different way to everything else (it really kicks in heavily at night and I have to use oramorph on top of usual pain meds to try to beat it back!) and this weird bone seems to be getting more and more prominent. My arm keeps going tingly and weak and rubbery lumps are appearing around my collar bone and neck. They aren’t listening, refuse to acknowledge the lumps and keep messing up - I really don’t know how to get them to take this seriously.
I’m just so worried that it’s going to be too far gone by the time they catch it 😕

#ChronicPain #lymphadenopathy #bonepain #Deformity #ChronicIllness #alone #Undiagnosed #doctorsdontlisten #ScaredItsC