I’m extremely sorry for your loss. I can’t imagine what you’re going through. Thank you for keeping us in the loop; I personally consider all of us a big family here on this forum.
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Thank you @Bruce.
Today makes 11 weeks exactly since she went into the hospital. Tomorrow will be 11 weeks since she’s passed on.
After 50 years, I still miss her so much that my heart breaks anew daily. Thanks to all who have sent me condolences. It’s nice to know people care.
I was watering her plants today, and a shoe box was calling my name from the top of the stack of accumulated “stuff” . I took it with me back to the living room and found Elaine had created a storage of memories.
The Box had four of my wallets from over the years, going all the way back to my teenage years. My driver’s permit from 1971. A picture of Elaine she gave me when she was still just dating this big old lunk. Some Father’s Day cards I had given my Daddy back in the 1990s. And on top of all these memories, was this framed picture. Sharing it with you.
From our wedding, September 11, 1976.
Jim
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That is incredibly heartfelt and wholesome. I’m so happy she was there for you during this rather unwieldy predicament that has brought us together. Thank you very much for sharing.
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I’m very sorry for you it must be a great pain… I can’t understand this pain because the one who was my wife after 15 years of marriage decided to label me as a depressed person and asked for separation she didn’t want to care about me anymore she took away my whole house and children since December 2024 I live with my mother. Dear Jim, I’m telling you this because I want you to appreciate even more the loving and caring wife you had in my illness I also had the misfortune to discover that I had a snake next to me who couldn’t wait to dump me at the first real difficulty of life. Sincere condolences
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Hello fellow PFS people,
I find it hard to believe that almost a year has passed since my last post to my own journal. I thought it was time to give all of you an update, those that are interested anyways!
To start the conversation, let me say that I have just read this entire thread from the beginning. I am again impressed by the fellowship we have had over years. I am thankful for those of you who have interacted with me during this time.
However I am saddened when I realize how many of those who have posted on this thread over the last 6 years are no longer here on this forum.
Although I have not posted as frequently as I used to, I do come to this page several times a day still, ever hopeful that I will see the post that a cure has been found. Hope Springs Eternal I suppose.
As you may be aware, my wife passed away 13 months ago. She was my single greatest source of strength in this life. She helped me get through the bad times, even while she was fighting cancer in her own lungs.
I still miss her terribly, I miss the encouragement that she gave me. So many times over the last year I wanted to give up, but I had promised her after the last time that I would not do that again. Even though she was not by my side, that promise to her held true.
Over the past year my sex life has remained nonexistent. I believe this is still due to the effects of finasteride, but in my grief I have had a total lack of Interest as well.
I gained weight when I was first hit with PFS and I have never been able to lose it. I have tried several diets including Keto with no good results.
Two symptoms that have been ongoing throughout this period are achy joints and muscle loss. Combine this with balance issues, and I now use a cane at all times. In addition, I now have arthritis in both knees and shoulders.
The severity of the joint pain comes and goes, and now the last several weeks have been some of the worst. By the evening hours I can barely walk from one room to the other. I think I crashed due to a meal that included soy sauce, something that I usually never eat which is on the list from bad foods.
I allowed a younger sister to move in with me several months ago, I felt I needed company to help keep me going instead of living alone. But my wife was the only family member who knew about PFS, and I have not yet mentioned it to my sister. I’ll have to decide soon if I trust her to know the truth of PFS, because I think she feels like my joint aches are exaggerated. But I think I would be embarrassed if she was to come to this forum and read this journal from the beginning to the end! So much personal info on there!
But finally some good news! Three months ago while I was in deep grief over the loss of my wife, I joined a grief support group. The group leader and one other participant have been extremely helpful and supportive as the meetings have progressed.
After prolonged contemplation I decided to tell these two ladies about my PFS damaged life. I wanted them to know that there was a reason that this old man had so many aches and pains. They have become important enough to me that I wanted them to know my truth. Now I have two people in my personal life who know the truth.
They have their own lives of course and they can never be as personally involved in supporting me as my wife was, but it was like a weight lifted off my shoulders knowing that someone else close to me in this world now knows what I’m going through.
They have been suggesting that I spend some time in the gym and try to strengthen my legs. I had to admit to them that I was afraid of that, because others here at the Forum have discussed how working out has caused them to crash. Any advice on this matter is welcome!
I am dismayed that so many of my old friends here seem to have left the Forum. Not knowing whether they have recovered or have just abandoned writing about it? As I mentioned earlier, I stop by here everyday several times looking for an insightful post that may be helpful to my condition.
If I see a post that I feel qualified to comment upon I will do so!. This has been an albatross on my back for going on 7 years now. I can only imagine the pain of you young guys who are looking ahead at a whole life with this.
Damn big pharma. Kennedy needs to work on this! (USA readers will understand.)
I pray for better days ahead for all my fellow victims. Jim
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Hi again,
As I mentioned in my post above, there are so many people that used to post here that I do not see much of anymore. To that end I’m going to call off a couple names here and hope that they will see this and come read that long missive I have ahead of this one!
Where are you, @Taw @LazarusRy. @Scotsman @Exsexgod. @Akiyah
It took me two hours to pen that post, I hope you read it! Jim
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Oh Jim, we are kindred.
I’m so sorry for what you have been through. I know the grief, pain and survival you speak of while we live with PFS holding us by the throat.
I am also sorry to have abandoned a fellow sufferer. This forum is a lifeline and it is because of it that I have a good path and manage my life as best as possible. And it is good.
While I may never be cured of PFS, it doesn’t define me anymore. It’s always there assaulting and robbing from me but I am a man of faith. God loves the humble.
I remember when I first came to the forum and had the epiphany that I wasn’t crazy, this has happened to others too. It was a great relief to know that and managing life was the next direction. You were there.
Reach out anytime,
Hey Jim. We are warriors brother.
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Thank you for your kind words. It’s great that you’ve seen some recovery!
TBH, I’ve had recovery in some aspects, but it’s an internal battle to remember that, with the unrecovered aspects beating me down.
I still pray nightly for relief from joint pain. I hope the Lord is giving me the “Not yet” answer, not the “No !!” answer!
Stay positive! Jim
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I’ve only done this once or twice before, I have posted a song elsewhere that really touches my soul and I’ve decided to repeat that post here. I think the words to this song could be an inspiration to those of us who are ready to give up the battle. I still feel that urge daily., Jim
I hardly believe it’s been nearly a year since I posted a song. Today I have an excellent song that really touches me as both a widower and a PFS battler.
The YouTube channel suggested this song last month, and I almost didn’t play it except the title drew me in.
Don’t give up, Performed by the duet of Peter Gabriel and Kate Bush.
The male side of the duet sings about how life is hard, how he’s beaten down. The part I really like is the female reply. She keeps telling him don’t give up, with words of encouragement.
Throughout the song the couple is hugging each other, which especially appealed to me since I haven’t had my wife to hug for over a year now. Those scenes of physical comfort and emotional support can bring tears to my eyes every time I listen to the song.
What follows are the female’s lyrics, which I think are of greatest Comfort to a fellow PFS sufferer.
Kate Bush lyrics:
Don’t give up
'Cause you have friends
Don’t give up
You’re not beaten yet
Don’t give up
I know you can make it good
Don’t give up
You still have us
Don’t give up
We don’t need much of anything
Don’t give up
'Cause somewhere there’s a place
Where we belong
Rest your head
You worry too much
It’s going to be alright
When times get rough
You can fall back on us
Don’t give up
Please don’t give up
Don’t give up
'Cause you have friends
Don’t give up
You’re not the only one
Don’t give up
No reason to be ashamed
Don’t give up
You still have us
Don’t give up now
We’re proud of who you are
Don’t give up
You know it’s never been easy
Don’t give up
'Cause I believe there’s a place
There’s a place where we belong.
I hope you’ll give the song a listen. Jim.
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Music has a way of healing the broken parts of our soul. Beautiful
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Hey Jim,
I believe Manu made peace with PFS (as much as you can) and sort of moved on. That’s what I heard through the PFS community grapevine. Hope all is well. Hopefully we get out of this nightmare. Seems like we have more eyes on these conditions (PFS, PSSD, and PAS) than ever before.
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Thank you for that update. The anger that man had towards PFS and what it had done to his life was so great it’s hard to believe he moved on but it’s good to hear if he has. Stay as strong as you can, one day at a time. Jim
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Thanks, you as well.
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Conversation with a new doctor about PFS
Hello readers, and most likely, PFS victims. I have an update to share that will include my conversation with a new doctor (to me.) Over the last 6 months my joint aches have grown increasingly bad and painful. My usual orthopedic doctor told me months ago that I had arthritis in my left knee, and at 70 years old I’m sure she figured that’s all that it could be.
Since then my right knee has started aching more than ever and moving up into my hips on both sides. I’ve had this happen in the past but not recently, so I wondered if I had eaten something causing a crash? Anyways my usual orthopedic doctor is out of town so I saw a substitute. What follows is a summary of my visit. For those that like to keep it short, of course he doesn’t believe in PFS. Otherwise read on please!
The doctor had me get x-rays of my right knee for the first time . During the visit he then tells me I have stage 4 arthritis in both knees. (See below) Stage 4, from Google:
Stage 4 arthritis (severe/end-stage) is characterized by significant cartilage loss, bone-on-bone friction, large bone spurs, and chronic, severe pain, often limiting mobility and daily activities. It is a late-stage condition requiring intensive management, commonly involving joint replacement surgery (arthroplasty) or, in some cases, joint fusion. (Much more detail at Google)
Now the details:
The doctor said that he could not give me the HLA shots in my knee until after I have the cortisone shots first. But he did not offer to give me that shot today. So even if we start that procedure it’ll take months before there’s significant Improvement, if there is any. (When I went through that series of shots on my left knee I can’t honestly say I could tell a difference).
He also told me that most doctors won’t do a knee replacement surgery until I lose significant weight. Even with best results on a good diet, that would take months to accomplish. Furthermore I was always in good shape until PFS hit and I gained almost a hundred pounds in the first year, that I’ve never been able to lose, regardless of dieting.
So, It looks like I’m looking at a Summer full of painful knees.
I then asked him if he was open-minded enough to talk about a condition that could be affecting my knees, and gave him a paper I had made up discussing PFS. He held it long enough to read through it before he gave it back to me. Result was, he was very politely a naysayer.
He said that the definition of syndrome is that it “is a collection of symptoms”, and if I Google the question “syndromes which include knee pain” I will probably get dozens of answers, (his words not mine.) So that was his way of saying that it could be anything.
So I asked what about cause and effect? I took this specific drug that is known to cause this specific reaction. Why look for other answers when I have that right there?. His escape? He said that the bottom line is, he wouldn’t be the doctor that would work on that type thing anyways.
We talked about epigenetics and 5aris and gene expression, so at least he discussed it more than any doctor until now has. I told him that a number of foreign countries have totally banned this drug but that America just shrugs and turns a blind eye.
I did ask him if he thought that as I did less walking with first one painful knee, and then the other, could I simply have muscle atrophy? He told me that I actually had better muscles in my legs than most people my age! He did not think that was my problem yet. The only positive aspect of our conversation.
The end result was that I walked out of there with no answers that will help my knees anytime soon.
Since PFS first started with me 7 years ago, I have had some of my symptoms go away permanently and others come and go. But this is the first time that my joints have ached this bad so quickly including my hips and my shoulder joints which do not have arthritis. I honestly hope that it is just a crash that goes away fairly soon, otherwise I feel like I’ll be in a wheelchair by the middle of summer. Last nite, after an active day (for me) I could barely walk. It scares me.
As usual, comments pro and con are welcome. That’s how we have a conversation. Jim
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Statins inhibit the HMG-CoA reductase (HMGCR) enzyme. The post statin syndrome is proven to cause autoantibodies against the HMG-CoA reductase (HMGCR) enzyme.
Finasteride inhibits 5ar enzyme type 2. Therefore, it is reasonable to suspect finasteride may trigger autoantibodies against the 5ar enzyme type 2 in PfS. It is very disappointing little interest is shown here.
I have posted ad nauseam such links:
https://gazette.jhu.edu/2011/01/31/statin-use-linked-to-rare-autoimmune-disease/
And yes, I think it is likely those with post statin syndrome have abnormal gene expression and methylation involving the HMG-CoA reductase (HMGCR) enzyme.
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@Taw
Your discussion of statins and autoimmunity reminds me of a link I first posted 18 months ago, which discusses Keto diet and autoimmunity. I’ll post it again for those who missed it in post 190.
https://medicalxpress.com/news/2024-11-keto-diet-day-autoimmune-disorders.html
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I don’t want pity. I want believers. I want understanding. I want answers.
Effing PFS. I hate Merck
Jim
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Why do our members not post anymore?
I recently posted my first update in almost a year. I realized I had waited too long between updates and resolved to do better.
It has now been two weeks since that post. I look at the results and wonder what has happened to our forum members and their lack of posting?
My coming back message got 10 hearts, which is good to feel that support. But the posts are few and far between.
That leads me back to a period 4 years ago when I had decided to “opt out” of this mess. I still can’t admit what that means, but you can check it in Post 95.
In the days that followed, my fellow Forum friends posted their concern. To this day I thank them and appreciate their support. But out of the first 10 members who back then wrote me their support, only four of them have posted anything recently, meaning in all of 2026.
Yet all of them are still reading fairly regularly. I hope this is acceptable, but I’m going to list those 10 and ask them to come back and start posting more regularly. We need each other’s support.
Here is a list of the 10 that supported me then, and the month of their last post here.
@Crembo 12/25
@Cbrandel 6/25
@BestLife. 8/22
@Exsexgod 7/25
@Wintermoon. 2/24
@Taw. 5/26
@mstone. 5/26
@LazarusRy. 12/25
@Scotsman. 5/26
@Akiyah. 5/26
Please guys, come back and let’s support each other like we used to. If you’d like to PM me that’s OK, too.
Your friend, in need of support. Jim
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Jim!!!
After years of not checking this forum, I just received an email alerting me of your message. I immediately recognized your name, brother!
I’m thrilled you seem to be doing okay (I still think of you sometimes even though I haven’t visited the forum in years). I’m also glad that you decided to share your story with some people in the real world. I believe it’s a great decision, great because the meaning of life is connection.
Sorry to hear about your wife’s passing.
Regarding the knee: PFS may be involved but even without it, the body breaks down with age as an accelerating rate, I see it in my parents. It’s a tough thing to go through, I wouldn’t torture myself extra by wondering if it would have been better without PFS. It’s just another difficult part of life.
The reason why I’m no longer active on this forum is because I accepted my condition and I don’t want it to keep me from making the most out of this short precious life. I am alive and in a good place. That’s me and I suspect that’s a lot of other people – we did not end our lives, we are at peace with it.
For me, spending time on this forum was a mixed blessing. It’s a wonderful place but being here also kept my misfortune in my focus (“what you focus on, grows”) which was not good for my happiness. Feeling like a victim made me miserable, I prefer feeling like a hero 
My symptoms aren’t debilitating so I decided to stop ruminating, and focus on purpose, on what I still want to do in this life while I have the chance.
I wish I could make everyone realize that when people go silent on this forum, it’s usually not because they passed away but because they came to this same conclusion. I hear that people who end up in a wheelchair after bad car accident are at peace with it after a while. We are tough motherfuckers!
… who do need connection.
I hope you all understand and forgive me that I’ve moved to doing this in the real world for now. I will continue to think of you guys.
Take care Jim - and everyone reading this (@LazarusRy, you’re special as well!). Don’t let 'em get us down. To the very young ones: enough women still like us. Try not to ruminate on what you lost but let’s be determined to make an impact while we can!
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Jim you have my absolute empathy, I wish I could offer more. I do appreciate you sharing your experience.
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