So many answers, so many more questions

Discussion in 'Fibromyalgia Main Forum' started by texangal81, Jul 1, 2008.

  1. texangal81

    texangal81 New Member

    As I read more and more of the messages that have been posted, I see more and more of myself in them. For example, Emah's balance post revealed I'm not the only one who bangs into walls, people, etc. I trip a lot too. I don't fall down like a drunk, but I trip over things that aren't there, I blamed it on weak ankles. And sleep issues. I don't sleep worth a hoot, and haven't for years.

    So I'm going to ask the board if anyone has experienced something that has plagued me for years - weak 'pipes'. One of the reasons I don't sleep is that I'm up every 2 hours 'relieving' myself (I do use the bathroom *L*). I have a very strong bladder, I can hold it for hours in the daytime, even though I KNOW I have to 'eliminate'. But at night, it is constant. My Sil who is a PA suggested that perhaps the waking up isn't because I have to hit the porcelain God again, but that when I do wake up I realize I might as well take that trip. Anyone else plagued by this? I don't take diuretics and I don't drink ANYTHING after 5:00 pm (unless it is a tiny bit of water to take pills). Nothing helps. My blood sugar is normal, my kidney functions are normal, my bloodwork in fact is all normal. My next trip is too the urologist, but I'm so tired of taking off work for doctors, I have postponed it.

    I also developed small, itchy bumps on my scalp about 3 years ago. They don't scab or crust, you can't SEE anything on my scalp, but if I run my fingernails through my hair, over my scalp I can feel them. And they can itch like the dickens. I told my hair dresser and she checked and said it isn't lice (my son's stepsister had them a few years back). So I'm curious. Are they my own little special 'gifts' or does anyone else have them?
  2. simonedb

    simonedb Member

    I think there is a post right now over at the cfsexperimental listserve where they talked about low blood volume as part of cfids sometimes and that can cause excessive urination if i am recalling right, might be something to look into

    dermatolgoical problems and rashes and stuff happen often with cfs too
  3. frosty77

    frosty77 New Member

    I always get up at least twice, if not more, during the night, to use the bathroom. Like you, I can hold it for hours during the day - but at night, forget it! I can actually pee, go to bed and lay there thinking I have to pee until I have to get up again.

    I think your SIL may be right. If I sleep through the night I REALLY have to pee when I wake up - and make a mad dash for the bathroom. But I'm a light sleeper so when I'm awakened during the night, each time I have to get up and visit the bathroom.

    With regard to the head bumps, I've had these for many years (I've had FM/CFS for 35+ years). I read a couple years ago that jojoba oil helps this - I tried it and it does help a bit (the bumps are still there but don't itch as much).
  4. Pansygirl

    Pansygirl New Member

    I too can hold it during the day ~ the exception being in the car.........on long trips I have to ask whomever is driving to stop alot as even after 30 minutes it will feel like I'm going to burst. At night I wake up several times and always need to go to the bathroom.
    I have to also remember to go the bathroom before I go on a 5-10 minute walk around the block because if not I will start to feel the

    take care :)

  5. gapsych

    gapsych New Member

    When I was cutting down on my sleep meds., I found that I was waking up almost every hour to use the bathroom. I think it was more likely that I never got deep sleep. When I went back to the original dose, this stopped.

    Interestingly enough, my doctor wanted me to decrease my night med. to see if it would help with my daytime sleepiness.

    Much to my surprise as well as the doctors, the opposite happened. Since I was not going into deep sleep, I was more tired during the day.

    I have the bumps, but no itching. I think my PCP said they were cysts.

    I think that at one time, people thought by feeling the bumps and/or irregularities on your scalp, predicted the future but I may have dreamed that. LOL!!!!!

    BTW, I have always walked into walls, even before this DD. I think that sometimes when walking I get distracted and turn my head and then BAM!!!

    Take care,

  6. Catseye

    Catseye Member

    One of the more common problems we face is a malfunctioning hpa axis. The hypothalamus-pituitary-adrenal axis is one of the main mechanisms the body uses to maintain homeostasis. The hypothalamus is reponsible for fluid balance along with the adrenals.

    Vasopressin is a hormone produced in the pituitary that tells the kidneys to recirculate water in the body. If they don't receive the message from this hormone, then they send the filtered blood, or urine, to the bladder for excretion. What's happening is that your pituitary is not making enough vasopressin. It has other effects, too like the dilation of blood vessels. I use a synthetic version of the hormone called desmopressin.

    I don't have the problem so bad anymore, but it used to be terrible. I'd wake up every hour with a full bladder and extreme dehydration, and it would upset my heartbeat and stress my adrenals. You can get the nasal spray easy enough from your doctor, though the hormone is very expensive. This problem of low antidiuretic hormone secretion is called diabetes insipidus. It's not related to the diabetes that has to do with blood sugar levels, it's just the name that's similar. It's not too common among the general population, but many CFSers seem to get it after awhile.

    Tell them you suspect diabetes insipidus but be prepared for an argument. Most docs are going to be ignorant about it and they will say they don't think that's it. But you'll have to tell them it's a well-known symptom of chronic fatigue syndrome that happens when the hpa axis malfunctions. Tell them your friend takes the hormone and it's helped her, maybe you can get them to listen.

    I complained to doctors for over 6 months about it before I found one that would listen. I figured out online what the problem was but it was a real hurdle to convince a doctor who could get me the hormone. I was even trying to find a place to buy it online, I was so desperate. Meanwhile, my adrenals got really burned out from being dehydrated severely every night. And I couldn't sleep properly for about 7 months. I kept waking up every hour and needed help to the bathroom.
  7. jasminetee

    jasminetee Member

    Thanks for posting about your experience with Vasopressin. I'm going to look into that. I have this problem big time and I get so dehydrated I'm constantly drinking water.

    I've read that this nighttime peeing problem is common in PWCs and that it's called Nocturia. I know all of my hormones are low and years ago I tried DHEA but couldn't handle even a tiny amount. I hope I can handle this though as it sounds like it could be very helpful.

    I found a link that talks about Cheney using it for his patients and finding it helpful.

  8. Catseye

    Catseye Member


    another thing it does is it may increase your blood pressure a little. I had very low blood volume and low pressure all the time and it helped with everything. Nocturia means just peeing at night and diabetes insipidus is the cause of it in these cases. It's just trying to convince a doctor you know what you're talking about that's hard. Usually, they don't like patients telling them what's wrong with them, especially when you say things like "I know it's a problem for CFSers because of the widepsread hpa axis malfunction".

    That's going to be way over their heads and they will most likely think you're a paranoid hypochondriac. They're going to want to do their own tests for it. I convinced a doctor here to just let me try it. My reasoning was that the worst thing it would do is increase my blood pressure, which was low anyway, and that it will either work to stop the peeing or it won't. It's not like it was really risky or anything. So she got me some and it was just what I needed.

    But I had argued about it with a few other doctors first. They just don't like being told what you have. Maybe in some instances that's fine and dandy, but it's really frustrating when you know what the problem is and they don't believe you. Meanwhile, it really took a toll on my adrenals.
  9. bikrgrl

    bikrgrl New Member

    Yes, i experience both of the problems that you are describing.
    At times, I get up to go to the bathroom as much as every ten minutes but can also hold it for very long during the day??
    The scalp thing, is new to me (few months) i've been going crazy with it, checking for lice and everything too!
    Wow, i'm really wondering what could cause these.
  10. texangal81

    texangal81 New Member

    Thanks everyone, it makes me feel less alone now! I am going to find out about the vasopressin and find someone to give it to me. The peeing has gone on for years so I suspect I've carried whatever triggered the FM for a long time. I can pinpoint when the bumps started and it was about 6 months before I really got sick, which was when I bought my house and broke up with my ex-fiance. I do remember days after I got divorced where I felt lousy, but I self-medicated in those days with pain meds. I suppose I was inadvertantly treating something I didn't know I had! But that was a monkey I'm glad I shed.......

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