I go once a day; the most now is twice per day. When I first got off propecia over a year ago, there were days I went 3 times per day. All my bowel movements are soft, have mucus, and undigested food for the most part.
Did you use other supplements other than propecia?
Sounds like nme. First 2 months of propecia, I had diarrhea after every meal. Tons of undigested food in stool.
Now I go once per day. No to very minimal undigested food, but the size and color donāt seem normal.
Iāve only used vitamin D and multivitamins prefin. No supplements today except probiotics.prebiotic.
I believe thereās some huge inflammation in my body, specifically my gut and back. The first key is that my back pain goes away during exercise and comes back when I sit.
So hereās an interesting observation. My digestion improved tremendously after quitting multivitamins. When I was taking multivitamins, I always had loose stools. Now, since Iāve stopped, my stools are much harder and formed rather than loose and undigested. My guess is I had intolerance to the vitamins. Not sure if this is a temporary thing but it feels great to see some sort of normalcy after 1.5 years of PFS.
I also visited my first Gastrointestinal doctor in Japan. Not only was he a critical thinker but he was also open minded and no dismissive like American doctors. He diagnosed me with a Gastrointestinal Disfunction Disorder which is all connected to the brain. I was happy to see I didnāt have Inflammatory Bowel Disease or something of that nature. It does peak my interest as to what in the brain is creating this distinction.
Hey, man.
Glad to see your digestion improving.
I also noticed my stools being well-formed or complete slushy garbage depending on what I ingest. I noticed that sugar-free and low sugar type beverages give me softer poop.
Ramen and gatorade used to give me diarrhea within hours. Now they donāt.
I hope you and I continue to see further imrpovements.
1 Like
Thanks brother! I think itās food sensitivities of some sort. The doctor doesnāt think itās an allergy because thereās no biomarkers to support it.
So, Iām approaching two years of PFS and Iāve been reflecting on whatās improved, stayed the same, and gotten worse:
Improved: heart palpitations and anxiety. They still come from time to time but not as bad. If I drink green tea, itāll get worse. Also my running has improved. I run as fast as my pre-fin days. Funny thing is if I run a lot, my sleep is crap. On days I take off from running, I sleep better through the night.
Stayed the same: digestion and sleep. My body can only handle certain kinds of food. Muscle twitching is still there and my muscles still get tight. Low libido and low sexual desires. If I go to sleep upset or stressed, i know my mind will turn on at 0200 or 0300 wide awake. I also still canāt cry at all. My body is unable to reach the point of crying.
Gotten worse: my memory and my ability to be present in the moment. Itās strange but some moments feel like a dream. Itāll take me a moment at times to remember what exactly I was thinking just one minute ago. My skin and nails have gotten worse and are dry. Finally, body hairā¦wow much thicker. My head hair has receded slightly.
Iām not taking any supplements. Im however curious if theres a correlation between FAP and mental well being. Iām going down this road in hopes my body will naturally recover (some days I doubt it will). Hereās to two years with PFS or possibly an unnamed issue that Iām not aware of.
1 Like
I thought your digestion was improving? What happened?
I thought so too but nope! Still the same. I thought I had a positive correlation between vitamins and stools but I was wrong.
How long are you off vitamins? I think it can take months to notice some improvements.
Hey brother, Iām off and on the vitamins. My digestion is still no good.
I would recommend that you be specific. It is not only good for you to get real and better help from doctors, but is also helps your mind to be specific and for your emotions or feelings not to take over. What do I mean by this? An example:
āMy digestion is shittyā vs āI get diarrhea when I drink beer or soda or eat chinese foodā
āMy digestion is no goodā vs āI feel nauseous every day after breakfast and vomit 2 times a weekā
āMy body can only handle certain foodsā vs āeach time I eat ice cream, goat cheese, pizza, or a glass of milk I get acid refluxā
Let me give you a real life scenario. Woman (or man) goes into a doctor office. He finally comes in. She has been in pain for months, and now her back hurts and the same day was the first of her monthly cycle. She sees the doc come in, she starts crying, says āI really donāt feel wellā through sobs. The doctor calms her down, checks her body for 2 minutes, andā¦hands her a prescription for an antidepressant.
This is exactly what we do not want to happen to us!! But doctors are not trained to deal with: feelings or emotions or crying or complaining or vague symptoms or vague judgements.
They are data driven, scientific, mathematical. āI was hit on my back near the 3rd vertebra in my neck and I have had tingling for 2 months down the front of my left armā. We all have to retrain ourselves in having a more scientific approach to our symptoms and get somewhere with the medical establisment. Just my 2 cents.
1 Like
Appreciate it. Iām well aware that doctors want facts and data driven info. May I ask what triggered this post? Yes, I do try my best to give specific examples in the clinic and I agree we need to be specific. Appreciate the feedback.
I think @crossroads makes a good point. Describing whatās going on is really important, here too. The more weāre able to describe our experiences and the more we see other people doing it, the more weāll be able to tell others when itās important.
If someone perfectly describes something and another person who struggles to explain themselves sees it, then theyāre going to be better off for it, theyāll be able to explain themselves. The original poster is better off as theyāve gone through the process of working out how best to describe their condition and will be able to do so clearly and concisely when they need to.
The first couple of times I saw a doctor, I felt like I couldnāt explain myself, that the doctor didnāt understand and that he drew incorrect conclusions. If Iād gone through the process above, it would have been easier to share what had happened, because Iād already have descriptions that could be understood in my head.
Are you suggesting I need to be more descriptive in my posts and I certainly have no problems doing so. Iām however trying to determine why my post is being utilized as an example versus a general comment across the forum about being descriptive which would be my overall recommendation. Just curious since my posts go back months to two years. I suspect this feedback was directed towards my digestion comments but I could be wrong.
By the way, just want to add that I appreciate your inputs @Greek @Crossroads. I know we all have a good intent behind our messages and itās unfortunate we canāt regularly chat via zoom (face to face) or through another platform. I understand the underlying message about being succinct in our dialogue with medical professionals to get the best prognosis. I know I can certainly do a better job of logging events and the symptoms associated with events/triggers.
Hey, to be honest I didnāt even really read the topic, I just saw that comment and thought it was something I could add to that might help someone else. In general, I think the little things are going to be what makes the difference. If we can all help lift one another up using the abilities we have, weāll be in a better place.
1 Like
Hey all, I have not written on my page in a while and i wanted to reflect on a few things.
-
As of now, since PFS is not a fully understood disease, I donāt know what my true issues are really. If I think I have PFS, I have PFS. If I think I have a hyperthyroid, I have a hyperthyroid. My point is I am who I think I am and doctors cant find anything wrong with me. The only thing that is wrong therefore must be me or the chemical makeup in me. The truth is I have taken multiple types of vaccines in my life to include anthrax, experimented with various weight loss supplements, drank a lot in college, started having panic attacks way before taking propecia, etcā¦my point is, i have no true way to prove propecia caused my problem. When I took 5-HTP after my crash, that REALLY fucked me up but it also smoothed out my depression to this day which makes me think something is wrong with my body related loop/processes. As one rheumatologist told me, āit is not the effects of propecia but 5-HTPā¦it cant be propeciaā
-
Going on over 2 years of this feeling has been exhausting and I am not including the years I was on Propecia (8 years on the drug). Some days are not so bad but itās exhausting to know that the feeling will return soon enough regardless of what i think or how i feel nowā¦butā¦it could always be worse. I have my health and am still able to run, lift weights, and spend time with my wife and children. Some days my sexual urges return to normal and my wife and i go to town! but on other days, I feel nothingā¦butā¦it could always be worse
-
In trauma there are positive outcomes. Whatever my problem is, I have learned to appreciate my now moments. Some days it REALLY feels like I have maybe one year left to live but life keeps going. People have told me I am cool headed, non judgmental, but part of that is from this journey. I used to be really skinny when on propecia and although I have gained the weight back and some, I dont beat myself up about it. the me then is not the me now and the me in the past will probably never return to the way i remembered it. Either way, I have to Keep It Moving (KIM).
-
What is life without pain and learning? Look up Aristotleās Eudemonia. In pain, there is livingā¦pain is part of the living and in that way and view itās not so bad. It has taught me to soak in the good moments like when the world feels right again or when that āitās Fridayā feeling suddenly returns or when I find myself laughing at otherās jokes and really having fun. Boy does it mean more now than the old me.
-
I donāt know how many more posts I can write on this website but remember to keep going. Whatever your journey is, embrace it. Stop resisting it. The sooner we do that, the sooner we can be the best version of ourselves and studies have proven that with various types of patients. Also we need to stop telling ourselves we have PFSā¦We donāt know what we have truly and reality is propecia could have triggered genetic diseases in usā¦think about the symptoms we have and the commonality between other diseases. The sooner we break free of labeling ourselves as a PFS victim, the sooner we can break our minds from the inner web.
Sorry dude, I know you mean well but this isnāt it. Weāre all here because weāve taken a 5-AR inhibiting drug thatās left us with life-altering symptoms that none of would be experiencing had we never taken the drug. Thatās literally the definition of a post-drug syndrome; the substances weāve taken are solely responsible for our current condition and nothing else.
To try and pin our misfortunes on other things is both inaccurate and counterproductive to what weāre trying to achieve: the initiation of research to prove the correlation between substance and condition. Suggesting our problems are caused by something else is deflecting attention in the other direction.
Again, I know you mean well with what you say man but we need to see this for what it is.
1 Like
I appreciate the intent, but this makes very little sense.
There are plenty of substances who can lead to a severe decline in peopleās health, Fin is no different.
If you are talking from a theoretical standpoint, then we could also consider the possibility that we all just got bad karma and by chances also happened to have taken Finasteride.
How likely is that?
The link is so clear I donāt see how I could tell myself āoh no, is not Finā.
Cāmon.
2 Likes