"Undiagnosable" Torso Pain - Help

Posted , 3 users are following.

I am at the end of my proverbial rope with these health issues. I have been to several doctors in two different countries with no answers, and my pain is getting worse. I'm hoping someone here may be able to help me.

I am a 29 year old female in good health, or I was, until recently. Four months ago, I started getting severe abdominal pain, everwhere. The pain would shoot down the front of my thighs, it was in both shoulders, across my lower abdomin, and ribs and chest felt like they were being crushed. My stomach bloated until I looked 8 months pregnant, and my clothes didn't fit. I got terrible diarrhea - I was running to the toilet 15 times a day. It got worse for two weeks, during which time I dropped 15 pounds. I went to A&E in Scotland, and was checked for ovarian cysts (I have a history) - nothing. When back into A&E two days later with the same pain and a fever, and was admitted to the hospital. I had chest x-rays, an ultrasound of my gallbladder, blood and urine tests, and an endoscopy. They couldn't find anything. I was told sometimes, women just have abdominal pain and they never find the cause. My fever was under control at this point, so they sent me home. Two days later, I was back again. The pain was worse. This time, they did an MRCP, another x-ray, and more blood and urine tests. Nothing. While I was waiting for tests, I had what I assumed could only be a gallbladder attack - crushing pain in my right upper quadrant, wrapping around to my back. I couldn't stop screaming, and actually thought I was going to die. They just gave me three rounds of oral morphine and told me to sleep it off. I don't know if I passed out from the pain or the morphine. After I woke up, the pain was almost gone - or at least, different and less severe. Still everywhere, but less pressure. 

Then, the consitpation started. I didn't defocate for 5 days. They wanted a stool sample, but I couldn't give one. I started having attacks of severe lightheadedness and confusion, and shooting and stabbing pains in my left shoulder, neck, collarbone, and arm. They checked all of my vitals, did an EKG which was normal, and finally sent me home. At my urging, they scheduled a HIDA scan of my gallbladder and a CT, but for 6 months away. 

The pain was so bad, I couldn't manage. I couldn't sleep. I was terrified. And, not to mention, absolutely alone. I'm an expat living alone, with no family or even a single friend, in rural Scotland. So, I got on a plane and flew back to New York. I saw a doctor there, who (based on my explanation of chest pains after eating fatty meals for the last year) immediately sent me in for a CT, another ultrasound, and a HIDA scan, along with bloods and urine screens. Finally, the HIDA scan came back and showed that my gallbladder was only functioning at 2% EF. I was elated to have an explanation for my pain. So, we took it out. Simple, easy, quick laproscopy, and I was supposed to be feeling better in no time. Except that I wasn't. 

It's now two months post surgery, and while the chest pains after eating have stopped, my digestive issues have stuck around, gas and bloating and bm issues galore (constipation and diarrhea, and all kinds of strange colors), but my arm and rib pain has gotten significantly worse. I will get shooting, stabbing, crushing pains through my ribs, shoulders, arms, armpits, and neck on both sides. I've just recently put together that this pain increases significantly in the week before and the week of my menstrual cycle. It's like a crescendo - building up until it's unbearable, and then slowly decreasing in pain. I'll also get jolts of pain through where my gallbladder was that literally bring me to my knees, and take me 15 minutes to recover from - that may be post-surgical stuff, but it's terrifying. I'm wondering if maybe it's endometriosis, but I have been through every possibility in my mind, and am no closer to knowing what's happening now than I was 4 months ago.

I have been to see the GP - the same GP that told me my concerns were "probably just anxiety" when I first went to see her. Now that I'm less emotional and more rational in my explanation, she doesn't think whatever is happening to me could be that severe, so while she is referring me to a gastroenterologist, she's refusing to request a rushed appointment.

I am sitting here in absolute agony. It feels like someone is crushing my ribs and ripping my arm from my body at the same time. And then the severe headaches start. And I have to wait 12 weeks to see a gastroenterologist. In the States, I could walk into a Dr's office today and have all the necessarry tests done within the week. I lovev my job and life here in Scotland, but at this point I honestly feel like quitting my job, giving up my visa and whole life in the UK, and go home to the US. But, I don't have medical insurance there, and won't have a job to pay my medical bills or living costs until I find one. And if I do find a job, I won't be able to take sick time to go to medical appointments. I am at a complete loss as to what to do, and feel utterly hopeless. If anyone has any advice, any idea at all, what this might be, or how I can convince the NHS to help me, I would really appreciate it. I don't know what to do anymore. 

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6 Replies

  • Posted

    You have a lot of problems and I think they're serious and I believe everything you're telling me and I don't believe that they're caused by anxiety. But I think that they are causing you anxiety because good grief they would be causing me anxiety. I live with chronic pain and have been for many years and I know what pain can do to the mind. But I can't say what I think is wrong with you because I have no idea but I have hypotheses of what I think might be something you should consider and that is that your pain might be referred pain from whatever is wrong with you. In other words whatever is wrong with you might be sending nerve pain to areas that your feeling pain. So I'm thinking those areas are not the problem but the problem is elsewhere and the nerves are being triggered buy whatever organ or whatever is wrong with you. I'm not explaining this well but I hope you know what I mean by referred pain.

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  • Posted

    Well, as a nurse of over 30 years, I have never heard of a case like yours. I think the shoulder & arm pain are, as  'amkoffee' suggested, referred pain. I have 2 thoughts about what could be the problem. Number 1. Hormonal - have you had those checked? Number 2. Allergies - food allergies have become increasingly problematic, so I would get those checked.

    With reference to your bloating, try taking a dose of Lactulose, it will ease the bloating. If I think of anything else, I'll get back in touch.

    God bless.

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  • Posted

    @amkoffee and @sue84978 than you both for your replies. My GP agrees that I may have endometriosis on my diaphragm and bowels. It would take months for me to be seen in the UK, and the pain gets worse every month. So, I'm giving up my job and visa and returning to the US to try to seek diagnosis and treatment there. I'll post a reply to this if and when I have a diagnosis and treatment, in case there are other people suffering similar symptoms. 

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    • Posted

      It is such a shame that you have to leave so much behind to get help for something that happens to a lot of women. And you are very young to have to consider that you may need a hysterectomy. Have you even had children yet. Hopefully they won't have to do that and that they can clean up the endometriosis without having to do a hysterectomy. I know with me I was 35 and I had a lot of endometriosis I also had a lot of other conditions and since I'd already had all my children we went ahead and did a hysterectomy. They were reluctant because I was so young but there was pre-cancerous conditions so it was something that just needed to be done. I hope in your case everything goes well and hopefully maybe after all is done maybe you can come back and pick up where you left off.

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    • Posted

      Thank you. It is a shame. I've spent the past 3 years trying to get to Scotland and set up a life, and I'm so disappointed to have to give it up. No, I don't have any children. My mother had to have a hysterectomy at 30 also, but she already had 3 children. I don't even have the diagnosis yet, but I'm almost positive. Every woman on both sides of my family has endo that they had to have surgically removed. I'm hoping they'll be able to relieve most of the pain with surgery, and I can take hormones to stop it from growing back, without having to have a hysterectomy. Thank you for your well wishes. I truly appreciate it.

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  • Posted

    Hi again, this is just a thought. I don't know your finances, but you would have to pay in the U.S. for  this investigation/treatment. If you at least paid, say £150 to see a specialist at a private hospital in the U.K., wouldn't that be a less complex move, than packing up & moving back to the U.S? The NHS lists are notoriously long, but private lists are VERY short, obviously. I've taken that route myself in the past, & I have to say, money well spent. If you can afford it, then I strongly advise you do it. Try asking your G.P. If he can recommend a renowned specialist in that field, who practises privately.

    Good luck!

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