Sickness and pain

I'm currently an inpatient in hospital. Iv been diagnosed with EDS type three (hypermobility type), pain amplifercation syndrome and SMA syndrome (it's extremely rare). I'm in pain 24/7, Iv been bed bound for 5 months. I have pain and inflammation nearly everywhere! The doctors think I'm faking and refusing 2 walk but I'm not I'm just in so much pain I can't get out of bed. I can't eat because I'm getting sick all the time and that obviously isent doing me any good. Iv been in hospital for 5 months now and I just want to get better. And because the Doctors think I'm mental they've taken me off morphine and given me a very low dose of ibuprofen. I might be moving to Great Ormand Street in London for specialist help but it's looking more unlikley than unlikley. Plz, I just want some advise 2 get me through this rocky patch of my life. Plz help me.😢

6 Replies

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  • I have severe back pain.siatica.i think cuase is infection.i may try disease specialist

  • I don't have an infection cus it's been going on for such along time

  • Psalm 91.and 30 and 31 helps.me.im going thru alot of testing too.its horrible

  • Hi Barney. I am sorry I have no knowledge of those conditions that you speak about. If these are diagnosed then I am very surprised the doctors think you are faking the amount of pain you are in. You certainly wouldn't be kept in hospital if it was considered that you were faking.

    Why are you being moved to another hospital ? Have you been told the reason for a move ?

    It does seem strange that you have been moved from morphine to ibuprofen just like that. It is not good to be on morphine for long. I am always trying to reduce the amount of opiates I take as believe me they are not good for a person. Physical ly, mentally or emotionally.

    Are your family supportive ?

    Please tell us a wee bit more of your history and what kinds of therapy you are getting. All the best

    Dee

  • Hi, I'm moving 2 a different hospital because my consultant thinks I'm mental and actually said 2 me that this is the new me. I need to go to Great Ormand Street Hospital because they have the only Neurogastroenterology team in Europe. My family are very supportive, they're the ones who pushed for the refferal. I'm now finding out the outcome of the refferal tomorrow.

  • Hi Barney. Do you mean that the consultant said that your pain etc had a neurological origin ie it comes from the brain and nervous system ? That s very different from saying you are mad / crazy. Could that be it ? If I were you I would tell them that you are confused about what they are saying and could it be explained to you again .

    Sometimes es doctors forget that we don't have medical training and that the language that they use is confusing. Mental to the ordinary person can mean mad. To the doctors a mental origin for disease means something completely different .

    That's just what I am picking up from your posts. Do correct me if I'm wrong

    Good luck with results

    Dee

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