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MixedMess

128d

Looking for help/answers on where to turn/who to see. I've had ongoing chronic pain over most of my body going on 3 years now. I get recurring symptoms of nausea and vomiting, headaches everyday, dizziness, severe back and abdominal pain that goes up under my ribs, through my neck and left shoulder. I've seen Rheumatologists and pain specialists who just can't give me a straight forward answer cos apparently my symptoms "just don't make sense" Been referred onto a Psychiatrist because last specialist thinks its "all in my head" I'm so upset and just want to know what's wrong with me. I can barely do anything for myself and use a wheelchair most days cos I can't walk far. This is so debilitating and feel so alone and not believed by doctors that my pain is real. please someone guide me on a direction I'm desperate to get my life back.

    • Javen

      77d

      I'm not a doctor by any means and this is only a guess. I've heard when something is wrong with certain internal organs than can swell and cause bad back pain/ flank pain. I could maybe guess if left untreated long term it could move a lot of things out of place. The next thing I could thing of is a kind of neurological manifestation. Neurological conditions can be hard to find since they don't show up on labs. It can seem unknown but I think the doctors just need to do more research and out more effort into finding out what's wrong.

      • Javen

        77d

        @Javen I also see you have elhers danlos. I know that can cause unknown pain aswell. I'm currently undergoing diagnosis for that. I've had a lot of pain with no inflammatory markers and no particular reasoning behind it. I'm still confused why I feel pain. But I stand by what I said about the organs. Ehlers danlos can cause issues all over so maybe it is multiple things that its affecting all at once. I hope you find doctors who listen.

        • MixedMess

          76d

          @Javen My GP suspects I may have Ehler's Danlos Syndrome because I have such unusual symptoms. He sent me to a Rheumatologist who told me I had hypermobility and Fibromyalgia. I tried all the different medications used to help manage Fibro but nothing helped and I keep getting worse. My Rheumatologist won't listen when I mention the EDS as he says it's rare and doesn't believe it's that. I am now awaiting to see a different Rheumatologist that specialises in EDS to see if he will do the necessary testing for it. With all the research I've done into EDS and POTS I am almost 100% sure that's what's going on with my body. I know there isn't a magic pill to fix those conditions but proper answers would be a great start.

    • 100Percent_K

      79d

      Has anyone done any testing for your GI tract?

      • MixedMess

        77d

        @100Percent_K I'm currently on a wait list to see a Gastroenterologist. Over here in Australia sadly it seems to take months to get in with specialists these days. Pre-covid you could get in within a couple weeks now minimum wait for most specialists is about 6months unfortunately. It's ridiculous really :(

    • AnimalBoy

      79d

      Im in a similar boat with similar symptoms with "no cause" as far as drs have been able to tell. Technically it is possible for long term traumatic stress to cause debilitating long term health problems but finding out what those health problems are is just as important as treating your mental health issues, if that's even the actual problem. Ive noticed how much I sleep effects my nausea and headaches, I consistantly need about 12-14 hours of sleep to avoid being sick, you might be able to pinpoint the problems by changing things in your life around and seeing what does what. I use muscle relaxants, thc, massage therapy, hot showers/hot tubs, steam, stretches I learned in PT, lidocaine patches, and various mobility aids to lessen and cope with the pain.

      • AnimalBoy

        79d

        @AnimalBoy A decent chiropractor may also be able to help find a reason for your pain as well

        • MixedMess

          79d

          @AnimalBoy Thankyou for responding to my post. I'm currently seeing a psychologist to help with all this. He assured me it's not all in my head. He found me a specialist that I'm on the waitlist for that may be able to give me some answers 🤞 I will look into the lidocaine patches you mentioned and see if they may help so thankyou for mentioning them. I do find hot showers/baths help a little but only bring relief whilst in them of course. Wish I could just stay in them all day sometimes lol. I'll also look into a Chiropractor. Thanks again! I hope you too eventually find some proper answers for your pain and nausea.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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