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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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G
George
Guest
Thanks Kim
This is a nice little graph to show the doctor someday. (like after the whole retrovirus as cause thing become standard) (evil grins)
This is a nice little graph to show the doctor someday. (like after the whole retrovirus as cause thing become standard) (evil grins)
fresh_eyes
happy to be here
- Messages
- 900
- Location
- mountains of north carolina
I think it's weird that they label the most prevalent symptom "post-exertion". WTH? Like there isn't room to write "-al malaise"?
K
_Kim_
Guest
Klutzo, I agree those are confusing descriptions.
Here's how I read into it:
Shortness of breath = getting winded from exertion
Air hunger = trying to yawn, but still can't seem to get enough air. Happens whenever I have caffeine or get really anxious.
Abdominal Pain = belly hurts
Abdominal Discomfort = bloating, gas, rumbling (why couldn't they just say that, though?)
Andrew
Senior Member
- Messages
- 2,523
- Location
- Los Angeles, USA
Interesting. Thanks for posting that.
Fms? Cfs?
I find it interesting that the most common symptoms are the same as for fibromyalgia. Once again I wonder if the diagnosis we receive isn't dependent upon which specialist we get sent to first.
I have never had concentration problems at all, despite having all the other symptoms in spades. I am losing my memory though, even my long term memories. Vast pieces of my past are disappearing.
klutzo
I find it interesting that the most common symptoms are the same as for fibromyalgia. Once again I wonder if the diagnosis we receive isn't dependent upon which specialist we get sent to first.
I have never had concentration problems at all, despite having all the other symptoms in spades. I am losing my memory though, even my long term memories. Vast pieces of my past are disappearing.
klutzo
Text of Survey
The survey _Kim_ referred above to was 15 questions long. Question 13 asked respondents to indicate which symptoms they had experienced within the past 7 days and to rate the severity of each symptom. The symptom list was compiled from several research questionnaires used by other groups. Here is the full list, as it appeared in the survey:
The survey _Kim_ referred above to was 15 questions long. Question 13 asked respondents to indicate which symptoms they had experienced within the past 7 days and to rate the severity of each symptom. The symptom list was compiled from several research questionnaires used by other groups. Here is the full list, as it appeared in the survey:
K
Knackered
Guest
I have this at times and it's bloody annoying, my doctor prescribed Ditropan but it makes me feel awful, as though I'm spaced out, so I've had to stop taking it.
What's the best way to treat it?
starryeyes
Senior Member
- Messages
- 1,560
- Location
- Bay Area, California
I've found it helpful to squeeze some fresh lemon or lime juice into a glass of water. That seems to calm it down and if it doesn't work at least you're getting lots of Vitamin C.
gracenote
All shall be well . . .
- Messages
- 1,537
- Location
- Santa Rosa, CA
urgent and frequent
I had this for years and years. Usually with pain. It felt like I was always coming down with a bladder infection. It's not so bad now. It's almost normal. I can actually go for a few hours sometimes and not think about my bladder!
I don't have specifics, but there may be multiple causes. You might try looking up information on Interstitial Cystitis. There may be foods and beverages to avoid or limit that irritate your bladder. After I got some help from changing my diet, I took those over-the-counter pills for "urinary pain, burning and urgency." There are different brands. The ones I've used are called AZO. It is Phenazopyridine Hydrochloride 95 mg. You take them for a certain number of days, not continuously. They turn your urine orange. My treatment plan was to stop irritating my bladder first through diet, and then give it a chance to break the pain cycle. It seems to have worked. A lot less problems now.
There are also things you can add to coffee (Coffee tamer), and food (Prelief), to help them be less acidic.
I wonder, too, if taking antibiotics and antifungals have helped me resolve this problem.
I realize now that you weren't asking about bladder pain, but urgency. I think sometimes they are connected. And if not, maybe someone else can use this info.
I am SO GLAD not to be feeling that burning pain and not having to pee ALL THE TIME. Life is better this way.
I had this for years and years. Usually with pain. It felt like I was always coming down with a bladder infection. It's not so bad now. It's almost normal. I can actually go for a few hours sometimes and not think about my bladder!
I don't have specifics, but there may be multiple causes. You might try looking up information on Interstitial Cystitis. There may be foods and beverages to avoid or limit that irritate your bladder. After I got some help from changing my diet, I took those over-the-counter pills for "urinary pain, burning and urgency." There are different brands. The ones I've used are called AZO. It is Phenazopyridine Hydrochloride 95 mg. You take them for a certain number of days, not continuously. They turn your urine orange. My treatment plan was to stop irritating my bladder first through diet, and then give it a chance to break the pain cycle. It seems to have worked. A lot less problems now.
There are also things you can add to coffee (Coffee tamer), and food (Prelief), to help them be less acidic.
I wonder, too, if taking antibiotics and antifungals have helped me resolve this problem.
I realize now that you weren't asking about bladder pain, but urgency. I think sometimes they are connected. And if not, maybe someone else can use this info.
I am SO GLAD not to be feeling that burning pain and not having to pee ALL THE TIME. Life is better this way.
K
Knackered
Guest
I realize now that you weren't asking about bladder pain, but urgency. I think sometimes they are connected. And if not, maybe someone else can use this info.
I am SO GLAD not to be feeling that burning pain and not having to pee ALL THE TIME. Life is better this way.
I don't have pain but I have the constant urge to urinate, even right after I've passed urine. It wakes me up 4-5 times a night sometimes, it's awful. If I didn't have a girlfriend I'd probably wee in a bucket.
Hysterical Woman
Senior Member
- Messages
- 857
- Location
- East Coast
Knackered/Rich?
Hi Knackered,
Yes, having to pee frequently (especially during the night) is very annoying. I have the same problem, altho yours sounds more severe.
I believe that mine is caused from the small dose of elavil that I take for pain and sleep, altho I am not sure about that. Frequent urination can be a side effect of that drug. If you are on any medication you might want to check the side effects.
Also, I believe that Rich has said that some of us might have an undiagnosed form of diabetes insipidus? Rich, if you are out there, can you comment on this? Frequent urination can also be a symptom of that illness.
Good Luck,
Maxine
Hi Knackered,
Yes, having to pee frequently (especially during the night) is very annoying. I have the same problem, altho yours sounds more severe.
I believe that mine is caused from the small dose of elavil that I take for pain and sleep, altho I am not sure about that. Frequent urination can be a side effect of that drug. If you are on any medication you might want to check the side effects.
Also, I believe that Rich has said that some of us might have an undiagnosed form of diabetes insipidus? Rich, if you are out there, can you comment on this? Frequent urination can also be a symptom of that illness.
Good Luck,
Maxine
Diabetes Insipidus and/or magnesium depletion
I've had this problem the entire 24 yrs. of my illness, and to some degree for many years before I got sick. Friends used to cal me "peanut bladder" because I could not sit all the way through a movie. One time I forced myself to sit all the way through a movie, and was in so much pain I could hardly walk to the bathroom. When I finally let loose, my pulse soared into the stratosphere and my friends had to take me to the emergency room, where they told me never to hold it like that again and if I had to hold it, to let it out in small amts., not all at once. This happened 11 years before I came down with FMS/CFS/Lyme and shows that my autonomic nervous system was already out of whack.
Both Dr. Teitlebaum (FMS and CFS) and Dr. Klinghardt (LYME), among others, have written that we have mild diabetes insipidus, which has nothing to do with sugar diabetes. The brain does not produce enough anti-diuretic hormone (ADH), in our case, due to hypothalmic-pituitary-adrenal axis supression. Sometimes aldosterone production is off too. I have two friends who've been tested for it, one with Lyme and one with CFS, and both tested positive. If you have this problem to any real degree, your electrolytes should be off in your regular lab work. Look at your last lab results and see if calcium, sodium or potassium are out of range.
Both of my friends took the preferred drug, desmopressin, and both got very ill from it. One did not pee for a whole day and stopped taking it. The other did not pee for over two days and started throwing up water, which can be fatal. Dr. Teitlebaum advises that the drugs are too strong for our milder version of this, and sugests we should just keep on "drinking like fish and peeing like racehorses". If you end up with a diagnosis of D.I., make sure you drink plenty of water and a Medic Alert bracelet or necklace is not a bad idea either.
Another clue to this is if you are asked to do a 24 hour urine collection test and require two jugs to do it, instead of the usual one jug. I messed up my first test because I did not realize I could not possibly fit a whole day's urine in one jug, even when depriving myself of water until I was so thirsty I could not sleep. I easily come close to filling two jugs when drinking normally for me.
I had a hair analysis done which showed a severe imbalance between calcium and magnesium. The lab knew nothing about my medical history but my age and name. The report said this imbalance would cause contraction of the bladder size and produce urinary frequency and urgency. It said I did not have deficiencies of either substance, just too much calcium relative to magnesium. I take a lot of oral magnesium, but in fbiro and esp. in Lyme (I don't know about CFS) the pathogen causes magensium to be excreted in the urine quite fast, so it must be constantly replenished throughout the day. You can test if this is your problem by peeing in a measuring cup several times and taking an average on the amount. I found that my usual bladder capacity is 1/2 cup. A normal person's is 2 cups. That explains why I pee 15-20 times daily, including 4-5 times at night. I stopped taking my calcium supps. but have seen no change.
So, I know a bit about possible causes, but am watching this thread to see if anyone has solutions. I have tried cranberry extract, which helps with the rare pain that feels like a UTI but isn't. It does not stop the frequency however. I spent two years on a low oxalate diet, which did not help at all.
Gracenote, your Azo sounds interesting, even though I do not have an acutal infection, but "AZO" says sulfa drug to me. Do you know if it is in the sulfa family? I am very allergic to those.
klutzo
P.S. Knackered- because you are male, I would get the prostrate checked out, just to be sure it is not BPH (benign prostrate hypertrophy). Just because we have CFS, does not mean we can't still have mundane things like that too. My husband does not have CFS, FMS or Lyme, but he has BPH and always has to get up at night to pee because of it.
I've had this problem the entire 24 yrs. of my illness, and to some degree for many years before I got sick. Friends used to cal me "peanut bladder" because I could not sit all the way through a movie. One time I forced myself to sit all the way through a movie, and was in so much pain I could hardly walk to the bathroom. When I finally let loose, my pulse soared into the stratosphere and my friends had to take me to the emergency room, where they told me never to hold it like that again and if I had to hold it, to let it out in small amts., not all at once. This happened 11 years before I came down with FMS/CFS/Lyme and shows that my autonomic nervous system was already out of whack.
Both Dr. Teitlebaum (FMS and CFS) and Dr. Klinghardt (LYME), among others, have written that we have mild diabetes insipidus, which has nothing to do with sugar diabetes. The brain does not produce enough anti-diuretic hormone (ADH), in our case, due to hypothalmic-pituitary-adrenal axis supression. Sometimes aldosterone production is off too. I have two friends who've been tested for it, one with Lyme and one with CFS, and both tested positive. If you have this problem to any real degree, your electrolytes should be off in your regular lab work. Look at your last lab results and see if calcium, sodium or potassium are out of range.
Both of my friends took the preferred drug, desmopressin, and both got very ill from it. One did not pee for a whole day and stopped taking it. The other did not pee for over two days and started throwing up water, which can be fatal. Dr. Teitlebaum advises that the drugs are too strong for our milder version of this, and sugests we should just keep on "drinking like fish and peeing like racehorses". If you end up with a diagnosis of D.I., make sure you drink plenty of water and a Medic Alert bracelet or necklace is not a bad idea either.
Another clue to this is if you are asked to do a 24 hour urine collection test and require two jugs to do it, instead of the usual one jug. I messed up my first test because I did not realize I could not possibly fit a whole day's urine in one jug, even when depriving myself of water until I was so thirsty I could not sleep. I easily come close to filling two jugs when drinking normally for me.
I had a hair analysis done which showed a severe imbalance between calcium and magnesium. The lab knew nothing about my medical history but my age and name. The report said this imbalance would cause contraction of the bladder size and produce urinary frequency and urgency. It said I did not have deficiencies of either substance, just too much calcium relative to magnesium. I take a lot of oral magnesium, but in fbiro and esp. in Lyme (I don't know about CFS) the pathogen causes magensium to be excreted in the urine quite fast, so it must be constantly replenished throughout the day. You can test if this is your problem by peeing in a measuring cup several times and taking an average on the amount. I found that my usual bladder capacity is 1/2 cup. A normal person's is 2 cups. That explains why I pee 15-20 times daily, including 4-5 times at night. I stopped taking my calcium supps. but have seen no change.
So, I know a bit about possible causes, but am watching this thread to see if anyone has solutions. I have tried cranberry extract, which helps with the rare pain that feels like a UTI but isn't. It does not stop the frequency however. I spent two years on a low oxalate diet, which did not help at all.
Gracenote, your Azo sounds interesting, even though I do not have an acutal infection, but "AZO" says sulfa drug to me. Do you know if it is in the sulfa family? I am very allergic to those.
klutzo
P.S. Knackered- because you are male, I would get the prostrate checked out, just to be sure it is not BPH (benign prostrate hypertrophy). Just because we have CFS, does not mean we can't still have mundane things like that too. My husband does not have CFS, FMS or Lyme, but he has BPH and always has to get up at night to pee because of it.
Hysterical Woman
Senior Member
- Messages
- 857
- Location
- East Coast
Klutzo
Hi Klutzo,
Thanks for all of the information!! I have wondered if I too (along with many of cfsers) have diabetes insipidus? I have read that increased thirst can also be a symptom, but it is one that I don't have. Do you think that one has to have the increased thirst to be diagnosed with D.I.?
And yes, the increased urination can pull the magnesium out of you - one more reason to supplement it.
Take care,
Maxine
Hi Klutzo,
Thanks for all of the information!! I have wondered if I too (along with many of cfsers) have diabetes insipidus? I have read that increased thirst can also be a symptom, but it is one that I don't have. Do you think that one has to have the increased thirst to be diagnosed with D.I.?
And yes, the increased urination can pull the magnesium out of you - one more reason to supplement it.
Take care,
Maxine
xlynx
Senior Member
- Messages
- 163
- Location
- London, UK
How about dizziness and palpitations for symptoms?
Does no one else experience these? I would say dizziness is up there for me on symptoms in a big way I am dizzy at least 50% of they day for the last 10 months.
Does no one else experience these? I would say dizziness is up there for me on symptoms in a big way I am dizzy at least 50% of they day for the last 10 months.
starryeyes
Senior Member
- Messages
- 1,560
- Location
- Bay Area, California
Dizziness and palps are a huge problem for me.
Hysterical Woman
Senior Member
- Messages
- 857
- Location
- East Coast
Dizziness/palps
Dizziness has always been a big symptom for me - especially those years when I was ridiculously trying to hold onto my job. My dizziness improves if I am able to go to bed when my lymph glands really swell. My palpitations have gone away since taking magnesium supplements.
Take care,
Maxine
Dizziness has always been a big symptom for me - especially those years when I was ridiculously trying to hold onto my job. My dizziness improves if I am able to go to bed when my lymph glands really swell. My palpitations have gone away since taking magnesium supplements.
Take care,
Maxine