Relapse

[latte]

Hello All chronic prostatitis / chronic pelvic pain syndrome sufferer
This is Latte emailing the board after a long absence from posting. Ten years ago I had a very bad case of chronic prostatitis / chronic pelvic pain syndrome that lasted a few years and I got better to the point where I was 90% for a long time. Last November I had a burning in my sinuses and heart palpitations, very weird combination. My doctor ran the usual full blood panel, all normal. After an echocardiogram showed nothing he sent me to an ENT, sinus scan showed nothing. This has been very strange since it has also affected my pelvis. For four months I have had a very irritating shaky body feeling, the sinus inflammation has subsided but whatever process is going on has settled in my pelvis very reminiscent of ten years ago. Fatigue, brain fog, pelvic pain upon urination. Basically the whole gamut has resurfaced. Its definitely a body/endocrine/stress process. My doctor has no clue. Any comments?

[webslave]

Have you had your C-reactive protein tested? Looks like you had a surge of inflammatory activity in your body, for some reason.

[latte]

Good suggestion webslave. Yes my CRP is 1.5 and normal is less than 3.0. My sed rate is 1 which is really low. Doesn't seem like inflammation. My EBVIgG is positive but so is everyone's at my age. I asked him to test my IgE and ACTH levels but he's pretty stubborn.

[webslave]

That's interesting. Can you think of anything that could have precipitated a relapse? Stress increase? Sudden fondness for, or overindulgence in, alcohol or an acidic or spicy food or drink? Exposure in workplace to a chemical that may have affected your biochemistry? I have seen quite a few potentially chemistry/chemotoxin-related cases, such as a certain professor of chemistry from Georgia called John Garst (wonder if he is still around?), and of course the sad tale of Tim. I remember at one stage noting that several members were connected with college chemistry departments or chemical-using industries. The theory would be that a toxic exposure could set you up to fail, as it were, especially if you happen to be genetically predisposed.

[webslave]

I emailed emeritus professor Garst and asked him for an update. His response was instructive for those considering prostatectomy:

I guess I cannot be said to have chronic prostatitis any longer, since my cancerous prostate was removed in 2007. That doesn't mean, however, that all my symptoms have disappeared. Most of the time they have, but once in a while I have a flareup of what feels like the same old stuff.

[latte]

Thanks so much for your response. I do work in sales for a medical company that uses some organic solvents but I am not in direct contact with them. I thought of stress since that was what set this off in 2001. I am not really stressed. Work and marriage are fine. I thought maybe an allergic response to some unknown stimulus. I would like my doc to test the IgE. Metabolically could it be my HPA axis malfunction? I am really at a loss to explain it unless its an immune response reaction but I don't really have bad fatigue, I still go out and play golf twice a week even if I don't feel very well. My main complaint is a very annoying body ache/shaky nerve feeling. It definitely affected my heart with marked uneven palpitations. Toprol seems to have stopped that. Now its nerve pain in my pelvis which is really set off by urination, sex is very uncomfortable right now. Its better than a month ago, maybe it will fade away, hopefully. I am doing my Dr. Wise relaxation tapes daily.

[webslave]

HPA axis malfunction in a setting of calm is not likely. The body ache symptom and malaise may be related to a subtle depression, and depression may actually increase sensitivity to pain, so otherwise minor feelings of discomfort may be perceived to be more painful than usual (there are studies supporting this).

Why not try Tramadol or Oxycontin for a week or two (if you can get them prescribed)? I found they could abort flares, years ago, because they act like antidepressants (opioids have anti-depressant actions) as well as subduing the somatic symptoms. Worth a try.

[latte]

Update from Latte, well my doctor finally found one clue, my IgE is 333, normal is less than 80. I don't really know if that's much of a clue but my allergy response is up. Is it possible for an allergic response to last four months? This did start in my sinuses before migrating to my pelvis. Dr. Parsons regulately prescribes Atarax to his IC patients and says it is related to allergies. If so, why doesn't my body discomfort subside?

[webslave]

Your body must be full of histamine, with that kind of IgE load. Take megadoses of Vitamin C, which mops up excess histamine, say 2 - 5 gram a day, for a few days.

[latte]

Well I'm back. After ten years of fighting this monster its back in a big way. Started with burning pain in the pudendal nerve area and caustic diarrhea. Became full body tingling, burning feet and brain fog. Its been now about 18 months and the brain fog is gone but the burning perineal pain and burning feet are bad after defecating and orgasm. Have been to a wonderful PT about twenty times with some relief off and on. Am taking Atarax, Singulaire, and Lyrica. Neurologist did a small fiber biopsy on my ankle and foot, came back positive for moderate small fiber neuropathy with no known cause. Don't know what to do now. It may be permanent says my neurologist. Not really much known about it. He said a nerve block may be helpful. Losing hope. After doing Dr Wise's protocol for ten years I thought I was done with this. Now its back worse than ever. All glucose tests are normal as are all other tests for autoimmune diseases. What now? Fell like I am screwed this time.

[webslave]

The fact that you now have symptoms in bowel, limbs and brain suggest that something else is going on. Are you also suffering from tiredness (fatigue)?

[latte]

Yes, I did at first but the brain fog and fatigue are pretty much gone. For a long time it felt like I had the flu all the time but that has subsided. Now the nerve pain in my pelvis is the worst symptom. Seems that these symptoms are consistent with small fiber neuropathy although its usually only in the hands and feet. I also have a compression at L5S1 which everyone tells me is very common. Would fixing the compression with surgery make me feel better? Seems like a big risk. Maybe I'll try Cymbalta or Tramadol. Can still work and function but its pretty uncomfortable day to day. Any suggestions?

[webslave]

It sounds very much like a mixture of conditions that are related to CPPS, namely fibromyalgia and perhaps some CFS too.

Unfortunately, this is a complication of CPPS. I myself have some fibromyalgia, even though my chronic prostatitis / chronic pelvic pain syndrome is long gone.