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Seeking Diagnosis for Chronic Pain

treehugger1

675d

I have spent my entire lifetime with consistent pain that just continues to grow worse. I have been to doctors yearly with new and worsening symptoms, my body has always been hypermobile and moves in ways others can't, consistent joints popping out of place but also some parts of my body don't move nearly as well as others. I have never been taken seriously until last year when based on my nails a doctor diagnosed me with psoriatic arthritis, but once the x-rays didn't show any skeletal changes, him and his office would never get ahold of me again after spending time calling and calling. it's getting to the point where not only am I in consistent pain, I am having a hard time getting up and moving because I nearly pass out and feel like I cannot breathe. it's like the world around me goes black. I recently moved from a small town with very little doctor choices to a giant area with hundreds of doctors around. what kind of doctor did you see for your diagnosis? even if this is not the right condition, I relate deeply to it and I'm hoping a doctor that specializes in it can point me in the right direction. I'm feeling extremely lost and no one takes me seriously. doctors don't take me seriously, my partner doesn't take me seriously and acts like I'm lazy, family members act like I'm a joke and pull the "haha! wait til you get older*. the women in my life who have gone undiagnosed with similar problems (my grandma and sister) and my mom who though she doesn't experience chronic pain is extremely supportive and are the only ones who take me seriously. they've watched me cry in pain since preschool and though it was brushed off at the time as growing pains, they feel like the only people who don't think I'm begging for attention. I want a solid diagnosis so that I can seek treatment, find some peace of mind in knowing what's wrong with me. thank you for reading.

2

9

9

Generalized pain

Ehlers-Danlos Syndrome (EDS)

Chronic Generalized pain

Edema & Anasarca

Naltrexone

Feeling of choking

Abdominal Distention

Dizziness

Cyclic Vomiting Syndrome (CVS)

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Top reply
    • MamaMe

      663d

      @Ark1 Hello, I am in a very rural area and it's a good 5 hours to a compound pharmacy. Would you mind sharing what online prescribers you've had positive experience with? Thank you

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    • Ark1

      673d

      Hi, similar experience. Found a good rheumatologist and neurologist and was finally diagnosed with EDS, Dysautonomia and Mast Cell activation. Went to so so many doctors over 15 years to finally get a diagnosis and some help. Please research low dose naltrexone, because you can get this prescribed online and it has been the single best thing for my pain. I also have to have a ton of salt and water so I don’t pass out or black out. Recently high dose ivc has kept me going quite well. Good luck, don’t stop!! Don’t give up. Maybe find a functional medicine doctor? They tend to listen best

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      • MamaMe

        663d

        @Ark1 Hello, I am in a very rural area and it's a good 5 hours to a compound pharmacy. Would you mind sharing what online prescribers you've had positive experience with? Thank you

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      • treehugger1

        673d

        @Ark1 thank you so much! Today has been an especially bad day for me, hitting the floor from blacking out. I will check that out and also look into a rheumatologist. I also need to work on my water intake. I am diagnosed ADHD and have an extremely difficult time remembering self care even with things I have to do like amping up water intake.

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        • Ark1

          672d

          @treehugger1 yes that makes sense. I don’t have adhd (but my husband does) and I can’t imagine trying to manage my health as well. I got a very large pill organizer for any meds and supplements I take and then set an alarm for each time I take them (3x day) I start my morning with a big cup of water and a packet of liquid iv. Keeping on with water and adding a pinch of sea salt under my tongue when I’m feeling light headed. I’ve near fainted driving, pushing the stroller, etc because no doctor was really validating my symptoms or helping me out. It’s super dangerous when not under control. The cost is high, but if you can get into a hydration room where they do custom IVs, I’d highly recommend it. I do the fluid with high dose vitamin c. At first I did it 3x a week to get the fainting under control. Eventually I have been down to once a week. I hope this helps! You’re not crazy and you aren’t alone!

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    • Keikochan

      674d

      Hey love, I'm also struggling with people in my life not taking my condition seriously. It sounds like you and I have very similar symptoms. Do you also experience GI pain and issues? That is one of my main pain concerns but I am also extremely hypermobile and I have been diagnosed with POTS which causes me to feel faint and also pass out. I am here with yoy

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      • treehugger1

        673d

        @Keikochan no, I actually got very lucky and generally experience no GI issues, however, my little sister who exhibits nearly all of the same symptoms as me is consistently experiencing issues such as being unable to eat or drink anything (even water) without throwing up. As bad as I feel for me and my chronic pain, I feel worse for her because she can't eat at home or in restaurants without getting sick and doctors consistently brush it off or tell her it's acid reflux when it's full on vomiting not stomach acid. I'm very afraid what this will do to her esophagus. I'm really concerned with POTs, I get scared to take showers now as I nearly pass out every single time and I struggle to get up without seeing black and having severe troubles breathing. Always here to chat if you would like!

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    • treehugger1

      675d

      definitely. It's been so frustrating spending my life head to toe in pain at different times and on top of that dealing with joint dislocation and such. Would you recommend a rheumatologist?

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      • AnnetteMarie

        674d

        @treehugger1 not really cause mine is doin nothin for me...nothing at all!!! I read the only treatment is very high dose narcotics n I am skeered to try them cause I don't wanna turn into an addict

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    • AnnetteMarie

      675d

      I went thru tons of pain in diff places at diff times al my life n finally figured it out..I did, not the mannnyyyy drs I seen ...and my rheumatologist agreed. Most Drs have no clue about elhers danlos n all they say is there's no cure n no specific treatment cause it's genetic so they pass the buck to the rheumatologist. I beg all my Drs to b aware of this disease n it's manyyyy symptoms so maybe they can spare someone else from Goin years not knowing wtf was wrong with them. It affects everything head to toe n I mean everything!!!

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☝ 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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