Good days follow bad days

General Discussion
#1

I’m on a downer right now.

At the end of last week my sleep was almost back to normal, my erections were constant, solid and had been for a while, and then to top things off, my relaxed size went back to normal.

On Saturday morning, I felt convinced this was all over. I realised I felt completely normal and had done for a few days.

By Saturday evening, I’d started getting some little twinges in my groin. And now my sleep is poor again. Yesterday I had around an hour of feeling lightheaded and detachment from the world. I’m aware of a lack of libido and response to it now too. I know these symptoms are so mild as to be almost non existant for some people here. I hope you’re feeling ok.

Through this whole period, I’ve had ups and downs and ultimately I’m in a better position than a month ago. It’s disappointing and saddening to have had things slip back from a positive state but I think that my condition will improve again. If it can so quickly go from essentially fully recovered to this, I have no doubt that the changes we are all dealing with are temporary. If you are concerned that you have irreparably changed things, look to the many stories of temporary but complete recovery that you can find here.

Once we have funded more studies and found out more detail of the mechanism at work I am certain that treatment will lead to recoveries that will be both quick and complete. If you’re reading this and want to help, please register and post your story here. The larger and more active this community gets, the better for us all. Please also consider regular donations to the foundation.

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#2

If you are already having good days so early i expect your full recovery wont take long :wink: i still miss having a good day though…

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#3

I agree, Greek I’ve been following your story pretty closely, I think your on a path to recovery. Just need to get your sleep dialied in and Im sure the rest is going to fall into place

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#4

What a difference a few days makes, I’m feeling much better and my sleep was better last night too.

I’ve had some really long, hard days at work this week - I don’t know if that helped me sleep better or not, but I thought I’d put it out there.

I think @Pete1989 is right, sleep is a really big part of feeling better.

Thanks for your replies, guys. These little interactions make a big difference to me.

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#5

It’s similar for me. Unfortunately, I never really feel like I did pre-Fin, but I have a PFS baseline that is well tolerable and when I am at this baseline I barely think about PFS, because I am occupied with life.

After years living at that baseline with only a few downswings of a few days every now and then, I suddenly crashed badly at the beginning of May for no obvious reason. That crash was even worse than my initial crash. In mid-August I suddenly started to feel better again and the last couple of weeks I was pretty close to my PFS baseline, restarted my workout routine, had sex more frequently and thought less and less about PFS (and thus posted less here). Unfortunately, in the last couple of days my sleep has turned worse again and I wake up with anxiety. It’s annoying.

It’s clear it is all connected. Usually, my symptoms come and go hand in hand. I can almost feel it in my brain that there is one “switch” that is off. It’s a weird light/cold feeling that covers my emotions, libido, longing for sleep, connection to the world etc. It gives me hope that if we find that “switch”, all systems may start to work properly again. To find that “switch”, and I can also stress what @Greek already worte, we have to support the research efforts of the PFS Foundation with donations and participate in the community-based research projects, in particular the genome wide association study. This won’t be solved without us. We have to do this ourselves and we all have to help!

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#6

So a couple of weeks later, I’ve just hit the downslope after a couple of days of feeling normal again.

It is so strange and a little dispiriting to say the least.

I’ll post this for other people as I think it’s worth knowing if you’re in any doubt about your position.

As I said earlier in this topic, I think recovery will be quick for everyone once we’ve got this worked out. If you’re reading this and are waiting to resume your life and you haven’t donated to the foundation, please do. You’re literally prolonging your current position. Every time we can fund a study, you have a better chance of getting your life back. If you wait for other people to do it it will take longer. If you’re saving your money for a vacation when you’re healthy again, maybe donate some of that now. If you have to wait the same amount of time until you can go on that vacation, it might be better to feel ok for the second half of that time, rather than feeling as you do right now.

My experience this time around: my sleep was completely fixed again, everything in my underwear looking pretty much as it should. Totally clear mind. My libido isn’t really that lacking anyway, but I felt an uptick in it. I had noticed that under my arms there wasn’t really any kind of odour - I’ve read other people here saying the same, that has been gradually coming back, and I noticed it was as normal the past few days.

I can’t really pinpoint anything that might have facilitated my improvement / regression. My fatigue has been bad and last week I took 2 days off work, got 7-8 hours sleep at night AND then spent 4 hours in bed just dozing or listening to music - just total relaxation. Yesterday I was out most of the day and night and by mid afternoon had felt some tightening in my groin. It’s possible that I rushed it and should have immediately headed home and jumped into bed. No idea but I think going forward I’m going to prioritise low stress and low exertion, good, simple food and rest (though recently I’ve been inclined to just eat what I felt like, including junk food).

We’re all in this together to some degree, guys. I hope this is helpful in some way and I hope that you’re feeling better.

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#7

I have had a similar pattern. I am in my 5th month of dealing with PFS. My main symptom initially was severe anxiety/tinnitus which then suddenly changed to severe depression a couple of weeks later (after I started buspar for the anxiety). The severe depression lasted about a month and then I had almost 2 good weeks when I thought that PFS was over but then anxiety and tinnitus returned with a vengeance in early August and I have been battling them since. Throughout all these months however I have had good days each month when everything returns to normal and I am back to my normal self without any symptoms. The longest was in July when it lasted almost 2 weeks. Other times in tends to last 2-3 days. I have not been able to identify what triggers the improvement or the return of the symptoms. The only exception is that at least twice, the anxiety returned after I had a little too much coffee. This is the only factor I could identify. I have stopped drinking coffee. The severity of the symptoms is less now and I am hoping that this slow improvement will continue. However PFS has also taught me not to get my hopes up too much. At least 3-4 times I thought I was over PFS only for it to come back with a vengeance.

The one thing that has helped me deal with anxiety the best has been silexan. It was recommended by a Swiss doctor and it has been great. It takes 2-3 weeks to start working but the improvement has been very good. If you google silexan (or Lasea - its European name) you will see that there are several clinical trials where it did as well or better than Paxil and Ativan in head to head trials in treating anxiety without any significant side effects.

Great communicating with all of you. Hang in there. We are all in this together.

Giatriko

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#8

@Giatriko, nearly the same up and downs for me. Had also one period of 2 weeks around 4 months after crash that i was nearly totaly cured. Then came the stress/anxiety problems back more severe.
Yesterday i began with Lasea, hoping so much this brings my stress down.

Best.
Z.

#9

That’s awful to hear, the return of symptoms must be so disheartening. But I think we can all take something from the recoveries that occur. There is a path back to health. I hope you’re both @Giatriko, @zodiacs, back to full strength again very soon.

#10

Through these relapses I did learn that there were a couple of things that made things worse. As I mentioned, at least twice I relapsed after I had more than usual amount of coffee. The coffee without a doubt triggered at least some of my severe anxiety episodes. The other thing I noticed is that my anxiety symptoms were worse when I used Benzos (Ativan/lorazepam) to help me sleep at night. I would sleep better at night but then when the effect of Ativan starting disappearing the following morning, my anxiety was a lot worse. I have stopped using Benzos altogether. Now I drink chamomile at night about 2 hours before bed time and then I drink another tea (several options in the grocery store) which contains chamomile and other herbs/teas that help relax a person (eg, Bigelow “sweet dreams” tea) and I use a very low dose (2.5 mg) of vistaril (an antihistamine like Benadryl) 1 and a half hour prior to bedtime. I also used melatonin for a while (1 mg) and it helped a lot, but now I can sleep without it. I sleep well and I don’t have the rebound anxiety I had when I used Ativan. I will say again that silexan (lasea) has been great help with anxiety. My anxiety levels are lower without drowsiness, rebound anxiety, concern for addiction or any other concerns for side effects. I hope both zodiacs and Greek and all the other PFS sufferers will have better days going forward.

#11

Hey @Giatriko, if you’re drinking tea, make sure that liquorice root isn’t an ingredient. It’s in lots of herbal teas I’ve seen and is a 5AR inhibitor.

#12

I think I’ve been up and down twice since my last post saying that I was up and down. 9 days since my “mini crash”.

This week I’ve felt basically normal most of the week. Unfortunately, I took lots of extra work on and I think the pressure and long hours took their toll. Or maybe they didn’t and I was just due to have another dose of fatigue, headaches, dizziness, shrinkage and groin pain.

I’m hopeful that this will be part of another bounce back to feeling ok again.

I think I’ll try and keep this updated. Something of a blog thread. Feel free to add your comments though.

Peculiarly, when I am starting to feel worse my sleep is good. I’ve slept 7+ hours the past couple of nights.

Hopefully tomorrow will be a new day. I’m going to get an early night (it’s 7pm right now and I’m ready to go to sleep - I haven’t been up 12 hours).

#13

Thanks for letting me know. I don’t think it is an ingredient but I’ll double check.

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#14

@Greek. I have noticed a similar pattern. My job is very stressful because it demands very complicated decision making every day. As I have looked back to the 5 months that I have been battling PFS, any time the stress was high in my work, my symptoms were much more intense. Any time I was away on vacation for a few days, my PFS symptoms disappeared or become so mild that they are almost unnoticeable. This has been very consistent during these 5 months. In fact when I went for a summer vacation for 2 weeks, I had no symptoms and I thought that my PFS days were over. Last month I was in Seattle for one week. I travelled with severe symptoms as the days prior to the trip were very stressful at work. After 2 days of relaxation, my symptoms resolved almost completely only to restart a day before returning to work. I wonder if other guys in this forum see a similar connection between stress and their PFS symptoms.

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#15

Time for an update!

I’ve been up and down and this is a big down. I’ve got weird pains in my joints for the first time and I’ve recently started getting muscle twitches and various aches - it feels like I’ve exercised for the first time after a long break, that sort of soreness, particularly in my lower back/flank. That seems to be subsiding though. My fatigue is very bad and my sleep also not so good.

I think that as suggested, stress is a big driver. I’ve been worried about my digestion for a week or so and I think that has put me into a stressed state so the above has kicked in. I think it might be a bit of a vicious cycle - symptoms make you stressed and stress increases the symptoms.

Happily, everything else is ok. A week or so ago, aside from the digestion concerns I was feeling pretty good. I’m sure I can get back.

I’m going to try and relax today, I was supposed to be socialising but I’m going to stay in and just try and feel better instead.

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#16

are you taking anything that would influence better sleep during the positive portion of the cycles?

EDIT: just saw your sleep thread.

#17

Hi, I don’t do anything for sleep anymore, though I do a sort of meditation/breathing exercise if (when) I wake up.

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#18

Just wanted to say how much I appreciate you and everything you do for this community @Greek, and I know many others feel the same way. Hoping your weekend sheds a bit of the additional stress.

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#19

Is anyone here suffering physical changes? aka penis shrinkage, or is just sleep problems alone? Maybe I’m on the wrong forum.

#20

Hi @abredlobster,

Unfortunately many have experienced lasting physical damage, including myself. Our exposure sounds quite similar. PFS does not present uniformly in physiological sites or severity, so not everyone posting will have an overlap of symptoms.

This forum has existed for over a decade so not all symptoms will be on the front page of discussion. Active discussions tend to most frequently revolve around therapeutic attempts affecting the more functional side of symptoms. You can use the search bar at the top to find posts related to what you are interested in.

Additionally, if you could please consider taking part in our survey to provide standardised data regarding your condition, we would be very grateful. It’s an important practical step to help us take the issue forward.