My success! Hope it can help others.

[OldKarz]

Caution: Long post! Sorry.

Back story: My doctor does not believe fibromyalgia is real so have not had an "official" diagnosis of fibro. I have had about 90% of the ills that go along with it. Often all at once. It can come and go at different times and can swing from debilitating to extremely mild. I have had it for over 30 years.

A few years ago my fibro had gone very mild however I developed severe leg cramps that would hit 2 or 3 times a day. They were the kind that would have been sore for a few days after except since it was daily it just made each worse. My doctor had no real advice/drugs to help.
I had seen someone on the web say they found Tadalafil (Cialis) helped their cramps. I got my doctor to prescribe them for erectile dysfunction - which is the normal use for these - even though I did not have that problem, since I doubted he would go for a random trial for cramps. They can be taken as a 20mg single 'as needed' or daily at 5mg. Tried a single to make sure I did not have adverse reaction and all was well. Went on to the 5mg a day and sure enough, after a few days, my leg cramps were reduced to a couple a month and were less severe and controllable.

Every once in a while I would stop the Tadalafil to see if the cramps returned. After about 3 days they would. Recently I tried going off again and my cramps did not return. BUT MY FIBRO DID! Over the course of a week it developed into the debilitating phase once again.

At first I did not link the two until I tried to come up with a reason for the return. When the light went on I started the Tadalafil again and felt a difference fairly quickly with total remission over the next 3 days.

OK. So what does this mean? It is a field trial of only one participant and only one success. It may not work for anyone else or only relieve some symptoms in others. The drug does interact with others so side effects are dependent on what is being used along with it and one's tolerance. 5mg a day is tops and quite a few problems can occur if it is abused. When I told my doctor about cramp relief he said he was aware of a local lady that used it and found the same relief I did. So females could also benefit from this 'male' drug.

This whole thing may be 'pie in the sky' so take it as one persons rambling which may not be valid for you.

I really hope this does help some of you!

 

[JamieMarc]

Very interesting. I take 5 mg of tadalafil a day for erectile dysfunction, but I have never made any connection between that drug and my fibro. That being said, leg cramps are not a major problem for me. My fibro manifests itself in other areas just as it does with all of us. No two of us here are the same regarding the symptoms of our fibro. But I thought your post was really interesting and it sounds like there might be something to it not just based upon your experience but also what your doctor said about his other patient and her leg cramps. Thanks for sharing.

 

[OldKarz]

Thanks for your feedback. Did you start the Tadalafil after the Fibro started? It is as expected that the individual results will vary with each individual and their symptoms.
The more feedback we get the better we will know if there is any validity to my findings.

 

[JamieMarc]

I started the tadalafil 6 years after my pain started and about a year before my diagnosis of fibromyalgia. Funny thing, your post made me realize I do get leg cramps, especially at night. While I was watching TV last night my legs were cramping something fierce. But it's still not my major complaint, not even in the top 10. LOL. So I think the conclusion that can be drawn here is that the tadalafil is not going to be a solution for leg cramps for everyone. I still think though that it's wonderful that it is working for you and I couldn't be happier about that.

 

[JayCS]

Hi OldKarz: Just curious which symptom areas benefit most from the tadalafil.
I've seen it increases blood flow, which makes it sound a little bit like vit.B3/niacin works.
Maybe it works by improving things like oxygen and nutrients getting to your cells?

 

[OldKarz]

Sorry to take so long to answer. Just doing another test to further the process.
It would be hard to limit the effect to a couple of improvements. Starting at my toes - the pain there diminished as did the numbness in toes and just below the skin on the top of my feet. Legs stopped getting sharp random, muscle stabbing pains and burning muscles as well as numbness in the skin just above the knee. These also diminished over most of the body. Weakness in feet and legs, as well as most of the body, improved greatly. Fibro fog, nausea and loss of balance mostly disappeared.
One thing I did not mention was that when I restarted Tadalafil I took a 20mg pill that morning, felt the improvement quite quickly and then followed up with a second in the evening (not recommended by the manufacturer!). Went back to my normal dose of 5mg from there on.
Now to the latest. I was so elated at getting rid of most Fibro that the pains in my shoulder joints, arm joints, muscles and finger tingling/numbness, that I just put them down to the known pinched nerves. As the pain ramped up back to Fibro level I realized it was mostly Fibro with nerve complications mainly in the fingers.
This morning I took my usual 5mg plus a full 20mg pill. Again, within a short period, the Fibro part diminished to the point of almost disappearing. Why the shoulder and arm Fibro escaped/returned after my first rounds I do not know. I will continue experimenting when the Fibro returns. My problem is getting a supply of Tadalafil beyond my daily prescription.
When taking the excess I monitor my blood pressure regularly in case there is a problem. However I have not seen any significant change with the pills. As a side note I never see any difference in the erectile function either, but that may be because I do not have the original problem.
Seems like I am doomed to annoy people with long messages!
Take care, stay safe and positive and continue your much needed interactions.

 

[OldKarz]

Just an update: Fibro still virtually nonexistent - traction on neck pinched nerves giving relief.
I fully expect Fibro to return and will hit it again with additional 20mg of Tadalafil to see if it will do the job once again.

 

[OldKarz]

Today's update: Fibro has started to return in my upper body - shoulders and arms, hands etc. Felt the beginnings yesterday. So about 4 clear days after the 20mg pill.
I am going to let it run until my lower body gets in the act with strong identifiable Fibro ills. Then will take the 20mg Tadalafil to see if I get the same results as before.

 

[JamieMarc]

@OldKarz thanks for the updates!

 

[OldKarz]

Little bit of an update: Fibro has shown up only slightly more. Losing balance, burning and stabbing in legs, more shoulder/arm pain and muscle burning. I am still taking the 5mg Tadalafil daily and it may be slowing the progression. None of my symptoms are more than annoying at the moment. Although some of the stabs make me jump I could easily live at the current levels.
If it does not progress in the next week or two I will stop the 5mg and see how it progresses from there.

 

[OldKarz]

Today I had most symptoms back beyond the 'just annoying' stage. Crazy edema in my legs, numb toes, burning muscles as well as the upper body symptoms getting out of hand. The fibro fog and loss of balance was getting dangerous while trying to work on my old cars.
I am somewhat lucky in that even at their worse I am better off than many of you seem to be.
I decided that since we are supposed to be coming up to a fun time this weekend I would move on to the next part of the experiment. So took a full 20mg booster of Tadalafil along with the usual 5mg.
Within 30 minutes I could feel the results. Most symptoms dropped quickly and over the next hour many completely disappeared or were unnoticeable! I will have to see what the rest of the day brings and whether things stay good or regress.
One thing I did not expect was some improvement in my pinched nerve pain. The associated tendon pain is much diminished and I am getting strength back in my hands - as I am in other parts of my body. It does come and go so may not actually be because of the Tadalafil.
I will update this thread with future findings as I find symptoms returning and how often I need the booster etc.
As always this is just what I am experiencing and may not work for anyone else. Good luck to anyone that gives it a try. Let us know if you have any success at all. Be careful and check BP etc if you go to boost mode.

 

[OldKarz]

Correction and update:
I incorrectly indicated that the Tadalafil had helped my pinched nerve pain in my arm and fingers. Actually it was the fibro tendon and muscle pain that had gone, which is in the nearly identical areas. The pinched nerve still is doing its thing.
When I first jumped back on Tadalafil and found relief I took one 20mg in the morning and one just before bed. This time I only took the 20mg in the morning along with the regular 5mg pill. Although the lower body remained good the following day my shoulder/arm/tendon pains had started to return overnight. This morning I took the additional 20mg and will see if it stays away tonight.
I did way too much gardening/housework today so that may affect the outcome! Typical scenario on the days one feels good.

 

[OldKarz]

Got back from vacation, thought it is about time I gave an update. The 5mg of Tadalafil seems to be keeping the Fibro in check after the boost 20mg at the end of October.
I thought it started to return about 3 days ago with muscle pain and overall weakness plus my pinched nerve getting nasty. However my first test was to use Naproxen and after 3 days I am back to my 'normal'. Since Naproxen does not help my Fibro I can put the flair down to other issues.
So I am going to keep going with the 5mg until the Fibro breaks through - not that I want it to! Of course the real way of testing would be to go off the 5mg also and see if it returns in a few days after stopping. I hesitate doing this in case I cannot get it under control again.

 

[OldKarz]

Well I finally did the deed and stopped the Tadalafil completely on the Tuesday after Christmas. For a number of days I was fine. Then had leg pain and edema which kept coming and going for the next week. Some general muscle pain also but none were drastic. Next to kick in was shoulder and arm pain which gave me some trouble raising my arms. I had physio last Thursday and was given some basic nerve stretching exercises to do for my pinched neck nerves. On Friday I was unable to do the nerve stretching (flossing) due to limited movement and bad pain. It made sleeping very difficult/painful.
To do it properly I should have waited to see if all my other symptoms returned. However I wanted to keep working on the pinched nerves as well as relieve sleep deprivation and shoulder/arm pain. So on Sunday I took a 20mg Tadalafil. Within an hour my shoulder/arm pain reduced and the ability to have better motion also improved.
I took another 20mg Monday morning to knock it back some more. Now am back to my 5mg a day maintenance dose. Still have slight pain and motion reduction in the shoulder areas, which may or may not reduce further. At this point I will continue 5mg daily and maybe boost next Sunday depending on how things feel.
Of course it is possible that the improvement is nothing more than placebo. A drug trial of one is iffy at best!
Another reason for not letting the symptoms get worse is the fear of not being able to bring them back under control, which I have mentioned before. Maybe my 'brave' factor will kick in some later test time.

 

[OldKarz]

I did the boost, with 20mg Tadalafil, on Sunday. I have had the best Monday, Tuesday and now Wednesday I have had in a long time. What really surprised me was that things I thought were just age related improved drastically. I did not realize my brain slowing down was just residual fibro fog as opposed to just normal aging. I have not been so clear in years. Also 'old age' aches diminished maybe down to the point where it really is old age.
My pinched nerves are coming along quite well also - do not know if some of that is Tadalafil related or not.
As always, this is how I was affected, and may help only a few (or none) since we have no real idea as to what causes all our Fibros. It may only be placebo, although I think the results are too drastic to be only placebo effect.
My next stage is to decide when symptoms start to return and when I need a boost. My current hope is I will get a week before a boost is needed - so I could do it every Sunday as an example. Of course it would be nice if I only needed once a month or so. If my brain alertness drops a noticeable amount I think that would be a boost point.
Take care everybody and hang in there. There is always a reasonable hope that one of the treatments will relieve your fibro devils.