PFS is all over the Internet

General Discussion
#1

Hidden across the internet are many reports of people dealing with a mystery illness. Some of these reports date back to the early to mid 2000s.

Check some of these out:

https://www.healthboards.com/boards/thyroid-disorders/691918-facial-changes-anyone-i-dont-look-same-anymore.html

https://www.healthboards.com/boards/brain-tumors/635143-brain-fog-dizziness-fullness-ears-pressure-behind-eyes-things-moving-baseline.html
(This one is really interesting. If you read his story you can figure it out. He suffered since 1993(!) and was trying to figure it out in 2008. Someone eventually pieces it together too)

https://www.healthboards.com/boards/general-health/614517-19-year-old-feel-like-80-year-old-please-help.html

https://www.healthboards.com/boards/womens-health/193392-serious-side-effects-after-stopping-birth-control-pills.html
(This one seems to have been caused by a contraceptive called orthotricyclen. Googling this substance shows it has antiandrogenic properties)

https://www.healthboards.com/boards/thyroid-disorders/882066-19-year-old-male-desperately-needs-help.html

https://thinksteroids.com/community/threads/living-lonely-impotent-and-no-motivation.134255743/

https://www.healthboards.com/boards/myositis/1049391-my-ssri-caused-rapid-muscle-wasting-myopathy-myositis-rhabdomyolysis.html
(PSSD case which caused complete muscle wastage and changes to fat deposits)

https://www.healthboards.com/boards/general-health/527063-undiagnosed-desperate-help.html


(This guy is more self-aware. Seems to have induced an estrogen receptor issue on top of PFS? Or maybe he just has some severe novel form PFS?)

The point I am trying to make with this post is that the signs of this disease, whether brought on by finasteride, accutane, SSRI’s or some other antiandrogenic substance, have been out there on the internet for a long time. Imagine just how many people could be suffering from this without any idea of the cause.

One day this disease will be united under a single banner, which will drive us closer to the cure. This can only be achieved through advancing the research, which drastically requires more funding. I implore everyone to do what they can to help.

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#2

Man I would hate to be a PFS sufferer in the early days like that. Completely in the dark. At the very least, we have some understanding and means to connect in 2023.

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#3

Good work Ralph. It took me over 15 years to make the connection. Unexplained deterioration in health and nothing on the labelling. People take the drugs and don’t always experience problems immediately after starting or stopping them. The damage they cause to the thought processes and emotional state.making it even more difficult to pin it down. There will be many people out there I’m in no doubt. Suicide rates have massively increased over the last few decades I’m of the firm opinion these drugs are at fault in a lot of cases…Within a 10 mile radius of where I live 2 guys took their own lives because of fin and that’s what I know of. It’s a shame we can’t reach out to those you’ve found. Especially the one who started suffering from 1993 at the hands of accutane Awareness is key :old_key: which is why I always push the envelope in getting this out there.

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#4

@Balph, I specifically remember “Megazoid” from one of your links as one I identified with when scouring the internet for answers to my mystery illness back in 2010.

There seemed to be this common set of core symptoms similar to mine and I noticed the majority of patients had cited use of finasteride, saw palmetto, Deca Durabolin (nandrolone), and Accutane in association with what was apparently the same treatment-resistant illness. SSRIs, Lupron, and hormonal birth control causing this was something I became aware of after finding a “message in a bottle” @Awor was leaving on various health forums at the time.

One of the conversations involved a propeciahelp member interjecting to say “Hello, I hate to be the bearer of bad news, but I noticed you were using finasteride around the time your symptoms began.” and linked him to this forum.

Much of the past dialogue has been lost, including Dr. John Crisler’s “All Things Male” forum, 2 different iterations of a “RoAccutane Action Group” (RAG)forum, the previous pssdforum, and solvepfs.

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#5

That’s really interesting @Dubya_B . There appears to be a lot of history behind all of this.

Something I found of note about Megazoid’s case is that he claims that his symptoms started after an injury to his testicle, which he only had one of due to a birth complication. I think, in his case, this injury may have caused a temporary period of lowered androgens, and once things came back online the androgens would have rapidly increased, causing the condition we all know so well. Or it could have just been a red herring… Anyhow, I wonder if he’s still around.

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#6

@Dubya_B I just saw that you have been dealing with this since 1999. I’m sorry you’ve had to experience this for so long. What were your thoughts on the cause of your “mystery illness” during the 2000s when you had not made the link to accutane?

@LazarusRy Likewise with you Laz, 15 years ago is a long time. Edit: over 20 years!

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#7

Well over 20 years ago 15ish to make the connection. Thought I was off my rocker

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#8

I Saw @Konflict profile here in the forum and saw his thread saying that he recovered thanks to his vitaminic supplemention. Since he crashed so hard after this temporal recovery. He didnt update that thread his last massage is doubting if It was a good idea or not. Could you please edit that thread or post a warnimg? If some ppl reach his thread maybe will try those SUPPLEMENTS in that dosage since the title is so promising…

I didnt post anything on that thread because my english is bad and i dont want to bump it

Thanks and sry for my english

Ed: @konflict is the one Who wrote this https://forums.phoenixrising.me/threads/i-feel-like-giving-up-on-life.50299/ linked by my friend @balph

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#9

Good observation @Huehueh96 !

Konflict’s story is remarkable because of the severity of his symptoms i.e. systemic connective tissue disintegration. It makes me wonder if he did indeed cause some sort of issue with his estrogen receptors, like he hypothesised, or if he had simply made his PFS worse but developed rare catastrophic symptoms. I believe his second crash was from Vitamin E or K2, once again highlighting the dangers of experimenting.

There was another user named Douglasmich (RIP) from Australia who had the same thing. He had PFS but then crashed again from arimidex. Here’s a video he made shortly before he sadly took his own life.

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#10

Man, the CFS crew really hammers on this wastage.

“my socks started leaving huge indentations in my legs and feet that they never did before”

I have this like crazy.

“Muscle wasting, pheriphal neuropathy, loss of subcutaneous fat, stretchy skin, fissured and white tongue, flaky skin, thinning hair, wrinkling hands/feet, increased prominence of veins in hands and feet, fragile skin, slow wound healing, gum recession, ridged nails, mouth blisters, etc.”

Identical to the PFS wastage laundry list.

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#12

It looks like the people in the second thread are still trying to figure it out as of recent times. Someone should make an account and give them the bad news.

From page three:

“Symptoms started off with me losing 10 lbs of water weight over the course of a week or two, some joint pain, emotional liability. Slowly I began losing muscle and noticing I was getting weaker despite working out just as hard and eating as much. Then I noticed losing fat on my shoulders, hands. Next I noticed my muscles were getting soft instead of solid as they were before. Next came the cognitive problems. Soon I was losing weight pretty quickly, and I lost fat on my calves, face, and arms. Had joint pain on and off affecting different joints.

Finally, I looked like a skeleton and decided I had enough. It had been three years since symptoms began. Took a month of azithromycin, didn’t seem to be doing much then I did a month of doxy and cefdinir. I gained weight very very quickly on the doxy and cefdinir. Felt my muscular strength come back. Felt vital, athletic again. Looked normal. Brain fog gone, personality back to normal.

Then I stopped and symptoms slowly returned. Its now been 5 years since symptoms started.

All my symptoms are back, and I got some new symptoms. I started feeling inflammation / cracking in my neck bones, then having fasciculations in my inner neck muscles. Soon after, I felt like I actually lost muscles on my neck and started having neck pain. It’s like whatever I had spread to my neck.”

#13

Very interesting research, good work.

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