Help with strange symptoms? Please?

Discussion in 'Fibromyalgia Main Forum' started by jennypee, Mar 5, 2006.

  1. jennypee

    jennypee New Member

    My problem is less the symptoms themselves, and more the lack of interest doctors show in finding out why I have them. It seems to me that having these symptoms over such an extended period of time (10-15 years) is a major sign that something is seriously wrong. So why do the doctors not seem interested in solving the problem, even before I had FM?

    I have had severe bloody noses since I was in my early teens. I used to think it was something to do with weather changes or dry air, but really it happens under ANY circumstances regardless of the weather, dryness, etc. To get them to stop I pinch my nose and apply ice. Sometimes it takes a long time. I would guess that I have 80 or 90 bloody noses a year.

    I have had constant diarrhea (sp?) since my early teens. It was sporadic for the first couple years, but it became constant really quickly. I have tried every dietary change imaginable, and otc meds don't work for me. I don't have solid bowel movements ever. I've got to be malnourished-- this can't be ok! But again, I haven't found a doc who thinks it's signifigant.

    I've had so many doctors that I have a hard time believing that every single one was negligent, and I know I put enough emphasis on the issues. Are these really not serious?
    (I have had excessive blood testing for the reason behind pain, though I couldn't tell you what for with most of them-- doesn't matter though, because they're always negative)

    Do I just ignore it? Do I try to find a doc who is interested? Any advice on what's wrong with me?

    Thanks in advance everyone... I'm just lost.


  2. sydneysider

    sydneysider Member

    I've come to the conclusion that many doctors want the easy money, and therefore the easy to diagnose patients. Otherwise they don't want to be bothered.

    I've had some success through finding specialists who eventually got to the bottom of things, and came up with diagnoses.

    In my case, even dumb luck, helped find things.

    However, I have recently had a symptom flare up, and am finding myself going around in the same old circles with the doctors.

    I guess their knowledge is limited.

    There is lots of IBS info here if you search. I suggest that you post each symptom separately, in order to get the attention of people with the same problems.
  3. Cromwell

    Cromwell New Member

    Somwehere about some medical condition that causes multiple bloody noses and for the life of me I cannot recall what it was except that it can be serious and is treatable.

    Can you google on Merck to check.

    Love Anne C
  4. Kat_in_Texas

    Kat_in_Texas New Member

    Jennypee -
    I had horrible nosebleeds as a child and for years not one doctor could tell my mom why. I can remember sitting in class or walking down the hall at school and my nose would suddenly start gushing for no apparent reason. It was mortifying! And sometimes the nosebleeds would get so bad that it would take literally an hour or two to stop. Awful!! So I can completely sympathize with you.

    I was finally told by an ENT doctor that the blood vessels in my nose are simply too close to the surface. A simple bump, too dry air, or a sneeze would make the blood vessels pop open. He cauterized (sp?) the blood vessels closed, a simple procedure to "burn" the blood vessels done in the office, and I went from having almost daily nosebleeds to having just one or two a month. The procedure helped for about a year. I started having it done annually when I was about 14 and continued until I was well past 30.

    I'm 49 now and haven't had it done in years, perhaps I finally outgrew the problem? I do still have nosebleeds occasionally but not often enough to have the procedure done. If they start occurring frequently I will not hesitate to have my nose cauterized again, it was a Godsend!

    You might find an ENT (ear, nose & throat doctor) who can advise you on this. It's simple and well worth your time!

    As far as the diarrhea issue, I wish I could help you there. My mom has had daily diarrhea for more than 30 years, and has been hospitalized several times when she quite frankly could not "stop the flow". I don't know how she lives with it, poor thing. She lives in constant fear when she's out of the house, because if the "urge" hits there is no stopping it, not even long enough to find a bathroom. She has seen dozens of doctors and been on every kind of medication there is but can't get it under control. And yes, she is severely malnourished, even though she eats decently. Her body just doesn't retain the nourishment she needs. During one hospitalization, the E.R. doctor told us that he had not seen a case of malnutrition as severe as hers inside the U.S., that she was as malnourished as a person in a third world country. I hate that she has to live with that.

    Sorry I don't mean to scare you, just wanted you to know that sometimes doctors can't find a cause or a cure. My mom swears by Imodium, says it helps more than any prescription medication she's ever taken. She takes it on a daily basis and it does help a little.

    As for me, sometimes I WISH I had that problem ... I have IBS but tend more towards the constipation problems. Sigh. Don't you just hate this DD??!?!?!??

    Good luck, I hope you find some answers!


  5. AnneTheresa

    AnneTheresa Member

    I know what you mean about the longevity of these symptoms. Recently I complained to a friend about having a headache. When she asked how long I've had the headache I answered - without missing a beat and in all honesty - twenty-five years.

    I particularly relate to symptom of chronic and severe diarrhea.

    The only upside to that particular symptom I've found is that - when it became necessary for me to start using opiates to manage pain - I didn't have to deal with the most frequent and terrible side-effect of constipation.

    Even now, using both hydromorph-contin and methadone (as well as several other constipating meds), I don't need to use a laxative. For the first time in my life, my B.M.'s are just about normal :)

    In answer to your question, I would say NO you should not ignore the symptoms (even though your doctors seem to be). You should keep asking questions until you get an answer that satisfies you.

    Concerns such as mal-nourishment should be addressed for the good of own your health and welfare as well as peace of mind.

    I relate to the frustration of working with doctors who don't seem interested in finding out the reason behind these symptoms. Unfortunatly, I expect many of us on this board can relate to these issues. You'd think the doctors would have an intellectual interest, if nothing else.

    My best advice is to keep looking for answers. Also, keep in mind you're not alone with this mystery illness. If we all keep asking questions we're bound to get an answer at some point.

    God bless,
    Anne Theresa
  6. jennypee

    jennypee New Member

    Thank you all so much for your help. I'll keep asking the docs, and hopefully I'll get some answers.

    It's so nice to have a place where people care, and don't think I'm more nuts than the average person!

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