Chronic Fatigue Syndrome (CFS)

[Clay]

After finally becoming comfortable with my chronic prostatitis / chronic pelvic pain syndrome diagnosis (self diagnosis really), I'm looking at my remaining symptoms and all I can make fit is CFS. I have an appt with an Internist in a few days to see if anything else is possible.

I have been lurking on a CFS board. It's a vastly different place than this is in many ways. One thing I had to get used to was endless comparisons of supplements. I've found some useful stuff there, but only after sorting through a ton of supplements.

I think partly it's because there is more hopelessness with CFS. I have a more hope that I can solve this chronic prostatitis / chronic pelvic pain syndrome stuff with hard work - stretching, PT, relaxation, anxiety control. If there's hope with CFS I haven't found it yet. Most CFS sufferers seem to get the chronic pain of fibromyalgia eventually, so there are a lot of ideas to glean from them:

-Epsom salts in the hot bath
-An electric blanket turned low underneath you when lying down to relax.
-water aerobics

OK, I'm not into supplements but here's what I found most interesting:

GABA, D-ribose, bromalein (pineapple extract, anti inflammatory), omega 3 oils, malic acid.

I've seen comments here about how chronic prostatitis / chronic pelvic pain syndrome might be a form of fibromyalgia. The way my fatigue and chronic prostatitis / chronic pelvic pain syndrome came on together tells me there are some connections, so I'm going to try you guys out for reactions to what I'm learning if that's ok.

They are, for example, working with drugs for restless leg and parkinsons in an attempt to address the muscle problems.

There's a new study out of Australia that says CFS is as common in men as women.

[CppsDad]

Fatigue is definitely a symptom for me, even now after so much recovery. It seems when I have minor pain, I become exhausted. I think it can't be much different than if you get a minor virus, and your body puts all the weight into dealing with the problem. You get a fever, and feel wiped out. I think chronic prostatitis / chronic pelvic pain syndrome causes that "wiped out" feeling without the fever and runny nose. I'm tired a lot.

I also think there is some minor depression that can go along with CPPS. There definitely was/is in my case. The chemical changes in our brains when we get down about this condition can secrete enough stuff into our bodies to get a psychiatrist on alert.

Lastly, stress and anxiety can cause fatigue as well, and many of us are high stress people. So take that for what it's worth.

Mike

[scotsman]

Thankfully fatigue hasn't been an issue for me.

I had glandular fever 15 years ago and was off for 12 month with that and I think I suffer from post viral syndrome. Thankfully though, fatigue isn't a symptom - though constant flu-like symtoms are.

Richard.

[Richie]

CFS and chronic prostatitis / chronic pelvic pain syndrome are very related. Some people react differently but its all the same. A screwed up immune system.

If anyone can explain the relationship between anxiety and histamine release, I am all ears. But its simple cause and effect.

Nothing is more tortuous to us than our own mind in the end.

[Clay]

I can imagine this much pain would cause fatigue on it's own, to say nothing of taking more Xanax and a vicodin here and there.

What I have is exhaustion, brain fog, dizzyness, blurred vision, nausea, twitchy muscles, wobbly knees, and more. It all comes an goes except the fatigue. I often have to leave my wife to finish the grocery shopping because my knees start to buckle, and in a relapse I can be in bed 15 hours a day. It's so erratic I can't make any plans, and I'm unemployed. On the other hand, I can play tennis for an hour or two. Huh? I don't get that, try explaining it to your wife or doctor.

I can feel the pain of chronic prostatitis / chronic pelvic pain syndrome stressing the CFS, and the CFS makes me more anxious and the chronic prostatitis / chronic pelvic pain syndrome gets worse. I've got a little death spiral thing going on. I actually don't feel that hopeless, but it gives an extra dimension to the whole thing, and an extra urgency.

[Ginty]

Hi Clay,

I've had this for years now and to start with it was prostatitis, but now its CFS and really the pelvic pain is more of a background problem compared to the CFS symptoms.

The death spiral you mention sounds very familiar to me, and I go from periods where I am convinced I may not actually wake up in the morning to times when I feel pretty normal actually in both mind and body.

I am certain though that the root of both my problems, CFS and CPPS, are both in my head since quite often when mulling things over I can feel something just click in my mind, like a realisation that I'm not actually about to die or that I do have a future, and from then on I can be relatively pain free for weeks or months.

I have also had some success in the past with giving up wheat, as webslave did for this same problem, but to be honest I feel like this just hasn't driven me yet to the point where my resolve has been strengthened enough to really stick to a good diet; but you might want to try it.

My other advice to you would be speak to your doctor about SSRI medication, taking this has been the single best thing that has helped me in terms of both mental state and phyiscal pain. I shy'd away from this for years but knowing what I know now I wish I had been on this from the start.

Also I would say avoid the CFS boards, I have no doubt that they do not help you. Reading material that re-enforces a belief that this is something that you can't recover from is madness and I've seen threads where someone suggesting that CFS is not a one way street is shot down by the very people who would be helped should the guys opinion be true. In this world you get what you believe you will get, this is no more true than in the case of a condition like this, so start to believe you will get better. You don't have a choice, if you don't you will go down.

This is a long process though, I am not quite there yet myself, but at the risk of sounding a bit self important, I can honestly say that were it not for trying to foster a positive mental attitude to this I would be in a far worse state. I still lead a normal life, work hard and do well in a professional career, go out and socialise regularly, really no one knows my problems. I do feel like crap a lot, honestly don't think I've got CFS-lite, I just know that retiring to my bed and interacting with other poor CFS souls is not the way forward. Although having said all that I definitely don't do much strenuous exercise or anything anymore since I've learned that this is bad.

So what I'm trying to say here is use this board only for your support, as you say CFS and chronic prostatitis / chronic pelvic pain syndrome are linked, so you definitely fit in here.
I think the overall tone of this place is very positive and has an air of hope about it and therefore by reading the success stories etc you really can begin to foster the attitude I am talking about above.

Hope this helps a bit.

[scotsman]

Great post and advice Ginty :icon14:

[Sleeper Service]

My Dad had CFS for a number of years. He said the best thing he did was set himself little targets which he gradually built up over the months and years. He says he's now about 90% better and enjoys life again.

He also said the worst thing you can do is get involved with catastrophic thinking and allow yourself to become idle. The targets you set don't have to be large - walking from a park bench to another is fine to start, but they have to be there.

If you want to get better you have to work at it.