Madwolf - a mystery for you

Discussion in 'Fibromyalgia Main Forum' started by klutzo, Feb 21, 2003.

  1. klutzo

    klutzo New Member

    I hope you don't mind my asking you for your opinion. For about 6 months now, I've been having chills on and off for no reason, esp. at night. I lay there all night, unable to get warm enough to sleep, no matter what I do. I also have to get up to pee a lot more during this.
    The past 3 nights, I've had to get up to pee every 45 minutes and got only a little light sleep. I also wake up with my eyes slightly swollen, and it hurts like heck to open them. My fingers are also slightly swollen and hurt to bend.
    Once I get up in the morning, this all goes away except for having to pee a lot more than normal. Thanks to FMS, I already was going about 20 times/day, but now it's every 20 mins. when I'm awake.
    I just had an FBS done 2 months ago and it was 89. It's been about 10 months since my last complete blood chemistry.
    I've been putting up with this as just being part of FMS, since I have also become much more unable to tolerate heat in the past year or so. I am only comfortable between 70 and 78 degrees now....not much of a range!
    Now I'm starting to wonder if I might have kidney failure. I did take Darvocet for 12 yrs. and have now taken Tylenol EX for about 6 yrs.
    My next doctor appt. is one month away. I hate to call up demanding an early appt., only to have all the tests come back normal, as usual. I don't want this new PCP to roll her eyes at me and think I'm crying wolf.
    I should also mention that I am on a modified high protein diet,and the last time I tried this I used a much stricter diet (more like Atkins)which caused me to have chills all the time, non-stop. I was so dizzy and peeing so much, I could not leave the house, so I went off the diet. I wonder if the chills and insomnia could be caused by an adrenal response to subclinical hypoglycemia (GTT tests make me very ill, though results are always normal). If so, then I must have a serious defect in my ability to burn fat instead of carbs for fuel. I have serious lipid problems (risk ratio of 7.1) which is why I am on the diet.
    Anyway, if you aren't asleep after reading all this, what do you think?
    Thank you so much,
  2. kadywill

    kadywill New Member

    this may be concidental, but I did the exact same thing while on a higher protein diet and my flank area was sore from all the excessive urination. My potassium dropped to a critical low level and I was dehydrated. I had to start drinking even more water which caused even more urination. My blood sugar was low and I felt so weak and nauseated. I started being repulsed by protein and I ended up stopping the diet. I STILL have nausea when I eat protein foods. I tried Atkins first and then Somers. I just don't think my body is normal in any way; these diets are good for so many people and I NEED to lose weight, but it can't be this way.
  3. klutzo

    klutzo New Member

    Gee, Jelly, if this is a "bug" then it's the strangest one yet! It goes away for days and then comes back, and always at night time. Sometimes it's gone all day and only comes back when I lay down at night!

    Kady, I think your experience sounds just like mine. Have you read Dr. St. Amand's book yet? He says 40% of us have something he calls "Fibroglycemia", a combination of FMS and subclinical low blood sugar. Theoretically, the high protein diet should fix the problem, not make it worse. I am esp. upset, because I am soon to start the Guai again, and Dr. St. Amand says it absoultely will not work unless the blood sugar problem is under control. The diet he prescribes in the book is just like the Atkins induction, and I can't do that or I become dealthy ill, just like you. I wonder what is wrong with us that this happens?

    I hope Madwolf can shed some light on this...I'll keep bumping it.
  4. 2BPainfree

    2BPainfree New Member

    I know your question is for Madwolf but just thought I would try to throw out a few other possibilities also (I'm sure you are aware of these things, but never hurts to hear them again...I know when I don't feel good, all the advice I can get is helpful!)

    1. Interstitial cystitis...this often goes with the FM like you said. I got mine to settle down with a very good brand of golden seal root (capsules: must be from the root & a very good brand at that, not mixed with anything else)

    2) Also LOT's of water if your taking high protein.

    3. Moderate to high protein diets are very harsh on the kidneys, alot of people are unaware of the stress the kidneys go thru trying to process and metabolize the protein. (Swollen eyes, chills and achy joints can be related to your kidneys working too hard) Dry eyes sound possibily like a bit of dehydration. Many people often begin to lose hair or it gets dry & brittle while on high protein diets. Some even develope Gallstones. I wonder if the bladder irritation could be a result from this also??

    Detrol is suppose to help with bladder irritation if all else fails (haven't tried it myself) I have also heard that atarx and other antihistamines help with bladder irritation. (this is not recommended for other types of bladder problems or for those with high blood pressure, but may be worth mentioning to your Doc...I had a specialist recommend this)

    4. Tylenol is processed thru the liver, Advil, motrin more of a concern with the kidneys than tylenol.

    5.Do you think you may have a mild bladder infection? I find sometimes I get so use to having certain problems I sometimes rule out the most obvious before I should. (The golden seal may help with this if it is only a mild infection with mild inflamation. If it continues might be worth a getting a U/A.

    I know you know all this stuff...just was trying to toss out a few ideas.

    Susan B

  5. missvickielynn

    missvickielynn New Member

    And again, it may be something you have already checked out.

    But just in case. First, remember that the body temp goes down naturally at bedtime, unless you are running fever, which is usually higher at night.

    Just as an observation, you might start keeping track of your body temp. Take it first thing when you wake up, before you get out of bed, if possible; about 2 or 3 hours after you get up; late afternoon or early evening, and bedtime, both before the chills hit, and again after they hit. Not only will you discover what your "average normal" temp is (many of us have sub-normal body temps), but you will also discover if you are ever running a low-grade fever at any time, and if there is a drop (or a rise) in temp corresponding to the onset of the chills.

    I have gone through several periods of time with this illness when I was dealing with either the chills and never being able to get warm 99% of the time, or the bedtime freezing/chills as you describe. I have also gone through periods of time when I was always too hot, but NOT having hot flashes.

    The absolute worst for me was before I went on the HRT patch, and I went through a year of unrelenting cycling from drenching, blast-furnace hot flashes, followed immediately by teeth chattering chills that lasted until the next hot flash. My clothes stayed wet constantly, and I was always trying to rip off layers of clothes before the flash got completely underway, then trying to get warm dry clothes back on before the chill set in completely.

    It was torture. If you can imagine this, the flashes were so bad that I actually looked forward to the chill for relief...until the chill hit, then I would actually look forward to the hot flash for relief from the chill....and the cycle would repeat over and over, with very few times of "relative" comfort. Also, I was drinking so much water trying to combat the thirst from the flashes, that I was constantly peeing! Was even experiencing some urinary incontinence. All of that went away COMPLETELY within less than a week after I went on the patch. I have been on it for a year now.

    Just wish it had been the Magig Bullet for the CFS/FMS!

    Hope you find some answers, and some relief from the chills and constant bathroom visits!

    [This Message was Edited on 02/22/2003]
  6. layinglow

    layinglow New Member

    Have you been checking your BP through all this? I remember from past posts with you, that you are hypertensive, as am I. Has your BP been running higher than normal?
    You are already at risk for kidney disease with hypertension. We discussed this when I was asking awhile back about the high protein diets with Mikie and others, saying that with my compromised kidneys, I was really fearful of these diets, for myself. I have hypertension, acidosis, elevated parathyroid hormone, chronic kidney infections -- all greatly increase my risk.
    A high concentration of blood triglycerides, which is common in people who have compromised kidney function too....
    Since you could not go the full blown Atkins, having such a severe reaction, and you have modified and are having similar symptoms.....makes this very suspect that diet is causing this, to me. Nocturia can be a symptom of mild to moderate failure, the edema is something to consider, too.
    You could phone your doc Monday, and just ask if he would send orders to the lab for creatine,level.... Could do calcium, phosphate, and potassium levels. Creatine would be elevated, calcium decreased, phosphate up, and potassium usually is norm to slight elevat. but can get dangerously high.

    I am hoping Madwolf will see this soon, as I am concerned for you, and think you need to address this, especially if your BP is up. Please keep us posted.
  7. TerriM

    TerriM New Member

    Klutzo -- one thing to add to madwolf's recommendation about UTI . . . last summer I had similar issues for several months & kept getting urine dipped to check for infection, kept getting pelvic exams checking for infection . . . finally someone said, we better culture even though the dip isn't showing infection . . . THANK GOODNESS! I had a severe urinary staph infection that didn't show on the dip and didn't give me burning upon urination. I was on ABX just a couple of days & felt totally better . . . bizarre. After the first ABX course it came back & they decided maybe they were wrong & it was contamination so they catheterized me for a specimen and there was the staph infection still going strong! I finally got rid of it with the second course.

    Also, I think in other posts you've mentioned having insulin resistance. I have that as well and I get chills, extreme thirst and tingling in my hands . . . IR can move into diabetes . . . have you had that checked out?

    One more thing . . . when I was having really low blood sugars I was shaking and sweating.

    Take care I hope you feel better soon. Don't know if any of this is helpful, but hope so . . . Terri
  8. klutzo

    klutzo New Member

    Some more symptoms were added since I posted this, and I now recognize it as a familiar old enemy that has plagued me for years. I still don't know what it is, but have been through TONS of testing with all kinds of specialists for it, and at one point was dx'd with probable terminal Carcinoid Syndrome! I'd be dead by now if that had been true.
    The new symptoms are burning, prickling skin, hyper-alertness, shakiness, palpitations, and green BM's, and unfortunately, these are all familiar to me. It had been a couple of years since I had one of these episodes....that's why I didn't recognize what was happening, esp. since the red, burning skin was not present at first, and always was he first symptom before. Sometimes this lasts for months, on and off.
    I have a sneaking suspicion that my withdrawl from Neurontin is triggering this somehow. So far, it has been tougher than withdrawing from Xanax, and that's saying a lot.

    Lane - psyllium is great, but has not helped before. I'll take some anyway, as it won't hurt. Thanks.

    Vickie - What you went through sounds awful. I hope it's over with!

    LL - my BP is perfect at 118/76, thanks. I thought of this one too, as elevated BP has been a part of these episodes before. Interestingly, the Calcium Channel drugs actually caused these symptoms to come back and get a lot worse. Can you tell me about your acidosis symptoms? I have wondered if this could be my problem, since I can't eat any acidy foods while it's going on, as they burn my tongue unbearably.

    Madwolf - my T3 and T4 are right down the midline of normal and my morning underarm temps average 98. I hate to add still more carbs to my diet, because this diet is the first time I've had normal triglycerides in my entire adult life (even when I was normal wt. they were too high). You've scared me enough that I may call the doc like you suggested, but I don't want to go through all those tests again for nothing, and then have the nurses look at me like I'm a nutzoid forever after. I've been having this whole collection of symptoms together, on and off for about 15 yrs. now and thought I had beat it, but I guess not. Now that you see the complete picture, got any ideas? None of the specialists I got sent to did ....except for 2 who thought it was Carcinoid Syndrome, and one who thought it was Pheochromocytoma. I had two VMA's and four 5-HIAA's done!

    Terri - I have no pain and no blood in my urine, and I got up to pee "only" 6 times last night, so I doubt it is a UTI. I always had unbearable pain with those and rush to the doc right away, but have not had a UTI in more than 20 yrs.

    Thanks so much everyone for your good ideas. If the burning skin and green BM's had been present when I wrote this, I would not have even bothered to post. I just didn't recognize it at first for what it was. I wonder if I'll EVER know what this is, since all the docs I've seen have thrown up their hands in defeat. Before anyone asks, yes, I've had at least 4 abdominal ultrasounds, paying particular attention to the gallbladder...that was always the doctor's first guess.

    I am overwhelmed by your thoughtful responses. Thanks.

  9. klutzo

    klutzo New Member

    Thanks. I already have had that 30-day averaging of blood sugar test done...the last time I had one of these episodes! I can't think of a single test I have not had, usually more than once, over the yrs. I've had this problem.

    You guys are so knowledgeable that I'd bet you'll come up with a new idea for me before the docs will.

  10. TerriM

    TerriM New Member

    During all of the research I've been doing I've run across some different items mentioning strange colors in urine and BM's . . . re: your problem I don't know if any of these could be connected & what your diet is like, but this is the info I had read: (of course this probably wouldn't account for all of your symptoms unless you were allergic or something)

    1. some people can't metabolize certain dyes in foods -- I specifically remember a woman mentioning her son had bright green BM's and the doctor told them to stay away from grape flavored items . . . they actually finally traced it to green dye in Fruit Loops Cereal.

    2. I've also seen this attached to having too much iron. (I know sometimes people can also complain of black stools with iron problems -- or of course blood). I've actually been looking into the excess iron issue because I have well water where I live that is VERY high in iron. We have a filter, but had problems with it back when I got sick. Dr. Cheney's article on Klonopin deals with neurotransmitter (glutamate/GABA) imbalances & neurotoxicity. I have also found articles linking excess iron to too much glutamate in the brain.

    I don't know if any of this is helpful, but I figure too much info & weeding out is better than not enough. Hope you feel better soon . . . Terri
  11. layinglow

    layinglow New Member

    Hey relieved to hear your BP numbers!
    Here all all the symptoms of Acidosis....all of which I have with the exception of Diarrhea, thanks to opiod regime. As you know kidney stone formation has been a big prob for me. All the rest of the symptoms are right on the money.

    Kidney stones
    Irregular breathing (breathing may become fast and shallow with frequent sighing)
    Dryness skin
    Lack of energy-not emphatic enough--complete exhaustion
    Nausea, vomiting-really bad, phenegren before climbing out of bed
    Loss of appetite-food is really disgusting most of the time
    Weak and easily broken fingernails--mine tear off in layers
    Impact on the nervous system

    Hope this has helped LL
  12. RedB

    RedB New Member

    I would definitely get the urine checked anyway, just in case. You don't want to get septicemic (sp?). It's not a pleasant thing, and can kill you if it becomes severe.

  13. klutzo

    klutzo New Member

    Thanks guys.
    When I pee, I pee a whole lot! I am also really thirsty all the time, and have been ever since I got FMS. I drink a gallon of H20 daily. When my Benadryl runs out at night, I have to get up and take more to get back to sleep, and I have to drink a whole cup of water or the benadryl burns my tummy. No dubt, that is part of the problem, but doesn't explain the chills, burning face, etc.
    I already know why my BM's are green. This is one part of it that the stomach specialist knew about right away. It's called Rapid Transit of the Bowel (RTB for short). The dark green color is bile that has not been reabsorbed because it sped through me so fast there was no time. If it happens al the time it can result in malabsorbtion. My typical transit time is 12 hrs., but normal is 24-36 hrs.
    If you would like to know how to check your transit time, it's easy. Docs go for the expensive day long barium x-rays. All that expense and radiation is not necessary. All you have to do is eat some corn at dinner and don't chew it very well. Note the time you ate it, and then just watch for it to come out the other end, and note how long it took. Do not take digestive enzymes when doing this. Corn skin is notroriously hard to digest and you can see it easily.
    My iron level was checked last yr. and was fine. Neurontin is a drug that raises GABA, so I wonder again if withdrawing from it could have somehow triggered this.
    That acidosis sounds awful, though I could use the low appetite part of it. My appetite is ravenous, and I have to deny myself constatnly or I'd be so fat I couldn't walk!

    [This Message was Edited on 02/22/2003]
  14. klutzo

    klutzo New Member

    Among all the tests I've had over the years during these episodes were two 24 hr. urine collections for Cushings. They had to give me two of those gallon containers to collect it all, but both came back normal. Also, though I have the fat middle that goes with Cushings syndrome, my extremeties are nice and muscular, not wasted like in Cushings. I think most FMS folks put out too much cortisol in response to stress, versus CFSers who put out too little....seems I remember that being one of the differences between FMS and CFS...don't know where I read it. Anyway, maybe I put out just enough extra cortisol to make me thirsty, and to account for my having osteopenia when I have zero risk factors and have worked out and taken calcium supps. all of my adult life. In fact, I know I read somewhere that FMSers have more osteopenia and osteoporosis, and the excess cortisol would be the logical reason for it.
    It was a good idea though...thanks for bringing it up.