Doctors dont believe me!!!

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New Member

Date Joined Aug 2009
Total Posts : 5
   Posted 8/28/2009 11:01 PM (GMT -6)   
What can I do to get my doctors believe me, I suffer from gilberts syndrome which cause me absolute turmoil. But is Australia doctors don't believe it causes pain. The pain on a scale of 1-10 is 11! No one will give me a treatment plan or a pain management strategy. I am being let down everywhere I turn. I don't know what to do, my illness has suddenly begun to get worse and pain relief is some I'm desperate to achieve when an attack hits. But no one will help me-rarely even ambulances help me, the last one I called said they won't help me and left me to suffer at home. I've seen ever gastro specialist in my town! Im absolutely helpless!

This link will help give some idea what is associated with gilberts syndrome.
Never take any moment in life for granted, you never know how much longer you have to experience anything.

Veteran Member

Date Joined Jul 2009
Total Posts : 2042
   Posted 8/28/2009 11:09 PM (GMT -6)   
What about finding a new doctor and when you see him do not present yourself as knowing why you are in pain, only that you are in pain. Let the doctor figure out what is causing the pain.

It is fine and a good idea to give a complete medical history of all conditions you have or have had, just don't say to the doctor I have Giberts and it is causing me to be in severe pain.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

Veteran Member

Date Joined Jun 2005
Total Posts : 610
   Posted 8/28/2009 11:27 PM (GMT -6)   
Did they say why they cant treat your pain? what is usually dont for this syndrome to help with the pain? Have you talked to others with this same diagnosis to ask what they have done? Sorry for hte questions, I'm just wondering as this would be my biggest questions if I had that. I dont know much anything about Austrelia, are there any pain clinics you could go to? Sometimes that may including have to go out of town. Many of us here have to travel quite a ways to find a doctor that can help, I have drive and hour and half to mine and some drive much further then that.


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Veteran Member

Date Joined Feb 2009
Total Posts : 999
   Posted 8/29/2009 1:30 AM (GMT -6)   
Welcome to our forum. I am sorry to hear that you are in that much pain and even more sorry that you can't seem to find someone who can help. From what I know about gilberts syndrome is it is common but severe symptoms are very uncommon. Thus, most believe that treatment is not needed besides diet restrictions. That does not mean that pain cannot accompany. We are not doctors and can't give that level of advise, but I know doctors who should not give medical advise either. I suggest that you keep a journal of when the pain seems to increase and what you did before the increase. Also, include what you did to try and relieve the pain and if there was any level of sucsess. Since many in the medical field do not believe that gilberts needs treatment it is not surprising that there are some who think it can't be as bad as you say.
My concern would be that is there a possibility that there is something more than Gilberts that is adding to the pain? I know that stomach pain and joint pain can be symptoms but there are other possibilities as well. If you were to present a journal of the pain and when it is worst and what seems to help at all, it might help a concerned doctor with ideas about options. Then finding a concerned doctor would be the next step. As Jim replied, take the approach to a new doctor that you do have Gilberts but you also have these other symptoms and hope that they will look deeper into the other symptoms even though they could exist because of Gilberts. You did not say what kind of pain or what if anything had been attempted by doctors but it could be worth a try.  

New Member

Date Joined Aug 2009
Total Posts : 5
   Posted 8/29/2009 7:00 AM (GMT -6)   
well, thankyou for you advice. The pain I get is in under my ribs, on the right side, and sometimes radiates into my back. It then gets so sharp that I cant move or breathe. Sometimes I black out form the pain it gets that bad. I tremble and get severe cold chills before the pain hits. I think I will start a pain journal. And also fid someone who maybe is more qualilfied with m specific condition. :-) For the moment it is all I can do.
Never take any moment in life for granted, you never know how much longer you have to experience anything.

Veteran Member

Date Joined Mar 2009
Total Posts : 1158
   Posted 8/29/2009 10:13 AM (GMT -6)   
I'm with fatherjohn on this one. What if you have something else going on? To me it sounds like playing russian roulette. I would go in and see a doctor and let them try and find why the pain is there. Of course they will realize you have another illness but what if the pain is not coming from that illness? What if there is another illness going on?

I have bad kidneys and the symptoms you just wrote above sound like my kidneys on a really bad day when I have stone or tissue blockages. I even get pain similar when I get VERY constipated from my pain meds.

I know its hard to think clearly when you are in so much pain but please think about going to a doctor without pointing to the first illness.

Kidney Diseases and Disorders
39 yr young female with,
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD

Also CHF (Congestive Heart Failure) and Sleep Apnea

Hopefully NO MORE........

Veteran Member

Date Joined Jul 2008
Total Posts : 2317
   Posted 8/29/2009 1:25 PM (GMT -6)   
I agree with the others. I sometimes get that pain. I know others hear describe those symptoms & have been diagnosed with costochondritis (I think that's how it's spelled). In any case, I think you definitely need a new exam to find out the cause of the pain.

Also, just as a friendly piece of advice, if you are in the worst pain of your entire life, call it a "10". Some docs consider people who say their pain is "11" to be overly dramatic & they don't take them seriously. I'm sure your pain is beyond horrible. Since that is the case, say it is a 10. Honestly, I don't always find the rating systems super helpful. They can be very subjective (though pain itself is subjective). In case it might help, I will post a link to the pain scale that my PM uses. It describes how the pain is affecting your life. You might consider posting it in your pain journal & bringing it with you to your appointment. If you don't find it useful, you might make up your own scale for rating your pain. Be sure to track whether pain is worst in the morning, noon, evening or middle of the night. Also, keep track of what things help your pain or make it worse. Hope that helps -- gosh, I sure hope you find someone to figure out what's going on & treat you soon!

Here's the link to the pain scale my PM uses:

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Veteran Member

Date Joined Mar 2008
Total Posts : 3089
   Posted 8/29/2009 7:20 PM (GMT -6)   
Hi Rachel,

Welcome to the CP Board of HW! I'm sorry that you have to join us because of pain, but we're happy to have you!
Are you seeing a specialist who is familiar with Gilbert's disease? If you aren't, I'd suggest that you find one. If you do have a severe or uncommon case, you want to see someone who has experience, rather than someone who is not very knowledgeable about the disease & just passes you off as being crazy. Have they done any tests to see if anything else is wrong? That may be somewhere to start as well. If it is true that Gilbert's disease does not cause pain then you may have something else going on. If you haven't yet seen a doctor who specializes in pain management, you should also look into the possibility of consulting with one. I don't know how the Australian health care system works, but here in the US you usually do need a referral to see a pain specialist. Good doctors are hard to come by. I wish you the best of luck & hope that you can find someone & something to help your pain!

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