I just wondered if anybody else suffered from the same problemI have, and that is I feel the urge and need to to urinate quite frequently and when I do is always quite a large volume. I drink a lot of water and herbal tea but I don't seem to be a hold on to it and any fluids I drink I have to urinate out quite quickly. Does anybody know if I could take anything to help with this problem. I also have a problem of constipation and when I try to pass stools sometimes it's impossible because they become very hard to pass I'm sure this is because I'm not holding fluids and the stool is drying out in the colon. So I now have to keep taking a stool softener to sometimes three times a day. Any suggestions?
We had a poll on this here last December see https://www.s4me.info/threads/unscientific-poll-how-many-times-do-you-pee-in-24h.12929/
I think a lot of us have some sort of bladder and/or bowls issues. For me IBS and very frequent urination, at the worst ever[y] 15 minutes, are a feature of PEM and of my food intolerances. In the past both would return to pre onset normal once any ME relapse stabilised or the PEM passed however more recently this does not happen and my new normal is relatively frequent peeing and lose bowels. [typos]
Another possibility is Addison's Disease : https://www.nhs.uk/conditions/addisons-disease/symptoms/ https://www.addisonsdisease.org.uk/
Also for men we need to add the need to be checked for prostate cancer. Medical advice should be part of making any conclusion that such symptoms are part of an individual’s ME or if they reflect a new additional condition. If a new condition, it might require treatment, or if symptoms of ME there may be possible medical management tools.
Hi, @Jessie 107. For me with those symptoms, it ended up I had Diabetes Insipidus. It's not the same as Diabetes except the frequent urination. It's of the pituitary gland. My doctor says it's rare to have DI, yet I know of a few people with ME that have it. There's threads about it elsewhere not sure if there's one here. I take desmopressin for it. Works well, except for me (and some) problems with low sodium with desmopressin, so need to limit the amount I take and limit my water intake (which is a whole other problem in summer heat). Best to see a doctor or medical practitioner to sort this out for you. Good luck.
@Yessica Thankyou for the reply. I seem to pee alot when I go, for example, About 500ml. Is this normal? I recently had some blood tests done which included a diabetes check, nothing out of range.
For constipation psyllium husk can help (BUT from what I know it's not for people with diverticulitis, gastroparesis etc. - so double check with other conditions you may have) Other things to induce bowl movements depending on what you can tolerante e.g. are sesame (tahin), espresso, quince juice or dried plums. Also putting the feet on a little stool to change from a "throne" like into a more squatting position ("squatty potty") (just my thoughts & own experience, no recommendations)
Same here. Pee a lot when I go if not on right dose of medication. Diabetes Insipidus is different than regular Diabetes. It wouldn't be tested for in the same way as Diabetes. Your doctor would have you do specific tests for Diabetes Insipidus. I don't know that most doctors would even look for DI. My doctor said when they learned about it in medical school cause it's rare they didn't think they'd ever have a patient with it. They went to school many years ago. So not sure where the research stands on this now (and if enough and what kind of research has been done) and what is taught in med school about it now. Good luck. Edit: added a word for clarity
Diabetes Insipidus is not uncommon in ME and Fibromyalgia patients, you can Google them together and find articles on it. I imagine because it is considered rare that little research is done, and if you can convince your doctor it might be an issue, they might well do some hormone based tests that they will think are the certain measures of having it. Or they might just skip tests and start you on pharmaceuticals, which is a crap shoot if it helps or brings new problems. Meanwhile we try to manage our fluid intake, electrolytes, have to pee often, and likely still suffer from peripheral venous system being shutdown, and a level of hypovolemia doctors would think doesn't exist outside of a victim with blood loss in the ER. Here is an article from 2002 citing Paul Cheney discussing DI in Fibromyalgia and what they still referred to as CFIDS - Chronic Fatigue Immune Deficiency Syndrome (ME). He states to actually not over do water intake, use salt, and on prescriptions: " If the DI test is positive, Cheney usually treats it with Vasopressin nasal spray. Cheney finds that about 50% of CFIDS patients show low-level DI. (Not surprising, given that the HPA axis – hypothalamus/ pituitary/adrenal – is suppressed in CFIDS.) Low level DI might respond to salt and water and licorice treatment. High level DI will not respond at all to those treatments, and without Vasopressin those patients cannot keep their blood volume up high enough. Note: Dr. Cheney has found that Florinef is not a good treatment option for NMH in most CFIDS patients. Florinef forces potassium depletion and further suppresses the HPA axis, which is already suppressed. Initial short-term benefits are seen with Florinef, but they degrade over time. With extended use Florinef actually exacerbates the disease in many patients. " https://www.prohealth.com/library/p...t-protocol-for-chronic-fatigue-syndrome-20149
You "just" follow a schedule for when to urinate and gradually decrease the number of times a day. Didn't work very well for me as the problem would return with PEM, and suddenly it wasn't an issue anymore although it was a consistent PEM signal for me for a year or so, and at that time I also had daily nocturia regardless of PEM which also just went away.
What about women who've gone through pregnancy and have prolapses or other reasons for incontinence. Or women with surgical damage? That's just two examples of women who are unlikely to improve with "holding on", although there must be many more. I really can't imagine "retraining" would be a useful thing to try. It just sounds like something that would regularly fail and humiliate the patient, with accusations from therapists of "you're not trying hard enough".
Yes Not so long ago a woman was in the news telling her story of becoming incontinent after giving birth and how she was fobbed of with that she should train her muscles etc., while the real problem was a damage she sustained while giving birth. A small operation and she was no longer incontinent. The second treatment I was offered was some sort of thingie that could send signals to the nerves in my bladder, but I didn't look into it further as I didn't see the point when the problem was so clearly (for me) linked to PEM.