When the PDE5 drugs don't even work...

I’m thinking that the Chronic Fatigue Syndrome is just getting much worse now. It’s been getting worse over the last 6 months. I feel much weaker now than I did before. I’m having to take more naps now. On the weekends I’ll probably take 3 or 4 naps a day on both Sat. and Sun. This all coincides with my inability to get an erection on my own even when trying to masturbate. I’ve also noticed over this time that I’m starting to drop more things out of my hands. Hope this doesn’t mean that I’m losing control of my muscles.

In my case I did go to a urologist only to be told that he could not help me. He said that he could give me an injection and I definitely would get an erection but that he could not help with my no sex drive issue. He said that he was going to refer me to an endocrinologist but he never did. I have to go back to my regular doctor in a few weeks to get my prescriptions renewed and I’m going to see if he will send me to an endocrinologist.

Needless to say I’m quite worried that I’m getting worse and worse.

Formula,

do you have anybody who will fight for you? I mean, if one is tired it’s difficult to find the energy.

Went to the nurse practitioner yesterday and switched to norvasc, cut the lisinopril in half to 10 mg, and left the hctz at 12.5mg. Now I get to look forward to edema in the ankles.
Askapatient ratings were very poor for Lozol, but very high for Aldactazide, which I think I’ll try (only two ratings). Other than BP drugs, I only take maca, arginine and health food supplements.
I just hope to breath freely again and run w/o hips aching, and get a stiff one.

Formula, I don’t get CFS. I know what you are experiencing is real, but it seems like a catch-all for when the medical world doesn’t really understand something. I mean, what is the cause of it?
Is it considered a family of symptoms, a form of MS? I get very angry at doctors who brush people off because they don’t know the answer but can’t admit it, and want to get to the next patient.
Give them hell—you pay enough for it!

Well that’s odd for Aldactazide, which is a combination of spironolactone and HCTZ. Spironolactone is an aggressive anti-androgen, and based on what I read, is more likely to bring your sex life to a complete halt than pretty much any other drug. But I’ve never tried either that one or Lozol, so I can’t say from experience.

Anyway, please let us know what you end up trying, and how it works.

Not really. I live alone so I’m pretty much on my own.

In my case I was diagnosed to have Epstein Barr Virus which is a component of CFS. It seems like I have read some things where it could evolve into similar things such as MS.

Formula,

Relatives? Moving close to them? Close friends that are aware of your condition?

Not really. I told my sister about it as soon as I was diagnosed last year but I don’t think she understands what all could happen. I don’t really have any close either.

Maybe you ought to think about relocating. If you’re going to so sick that you are handicapped (correct me if I’m wrong, but isn’t the outlook kind of grim?) - can you still work, for how long? - then wouldn’t it be better to be near her (and her family, if any)? I’ve understood that MS goes bad - regresses - goes bad - regresses and so on in a downward spiral. You might want to relocate before it’s too difficult.

Forgive me if I’m too direct.

It hasn’t reached that point yet and might not for several years, if it does. I will have to go back to my regular doctor here in a month or two to renew my prescriptions and I think I’m going to push him to send me to an endocrinologist or either someone that has worked with CFS patients in the past. Just to get an idea of where I am now and what to expect.

I’d still try to get ahold of someone closeby who can help you with the “fighting” when you are too tired. I don’t know if you are religious, but don’t some congregations have people that dedicate themselves to stuff like that. I know that here in Sweden the Red Cross have volunteers that help old people with booking doctor’s appointments and stuff. Seriously, look into it. The day that you are too tired to do anything you’ll be too tired to get someone to help you, most likely.

Insisting on getting to someone who has experience of your condition is worthwhile.

How was your usual erection strength before starting taking that anti-hypertension medication?

The beta-blocker and the diuretic may contribute to your ED. What beta-blocker are you taking? Some beta-blockers are less prone to cause ED. You could switch your HCTZ for indapamide (a diuretic that acts partially as a calcium channel antagonist and is less likely to cause ED). You’re probably taking IECA and HCTZ in the same pill, right?

If you tell us the exact substances you are taking (name and dosage) and your health profile (diabetic? Renal failure? Past stroke or myocardial infarction? Age? Family history? Weight?), perhaps I could help you.

Beast 2008,

I discontinued Bystolic last Friday, kept taking 10 mg lisinopril and 2.5 mg hctz. I am happy to report the weekend turned from one night to all three nights staying together.
I was able to get erections long enough to make it good for both of us and found she really enjoys oral, has multiple orgasms, and likes mornings and evenings, afternoons—hell, after 12 years of not having sex, she was ready to make up for lost time, and I had a weekend I will never forget. And fell in love.

The severe hip pain on both sides completely went away, the achille’s tendon pain went away, as did the difficulty drawing breaths while running. Now the good news, is that without the beta blocker in my system, my BP today was 121/78! Must have something to do with pure happiness. These drugs are evil.

I am 60 and have 75% kidney function apparently due to nephritis. That is my only current medical problem, and I just ran 2 miles, going for three in one month. Now if I can stop the drugs altogether
my erections will last as long as I want. Mind you, I was still using Viagra and Cialis, but will experiment this week without it on my own.

Formula, best wishes on finding a support group via a hospital or clinic; don’t give up because of one incapable doctor. I don’t think it has to be a downward spiral, using the right vitamins,
eating habits, and body care.

I weigh 185 at 5/11, no circulation problems, my father died at 62 from hardening of the arteries, mother is 85 in April. The natural erections have been slowly fading since 2003, and recently fading with PDE5 drugs. I am more hopeful now that even more conditioning and healthy eating, plus the addition of meditation and yoga, can eliminate the drugs completely and the need for any assistance at all—the goal being complete feeling and stimulation from natural sex. And no PE to let everything heal (except stretching). I look forward to your comments and suggestions.

Thanks. It just hasn’t been one incapable doctor, it’s been 7 years of incapable doctors. I’ve taken enough supplements and vitamins over the years to float a battleship and nothing has really done anything positive.