New here...need advice and help re: PAIN!!

[russeld]

Hey all, new here... but I need some advice.

I have been a CP pt for about 3 years now secondary to Failed Back surgery (Lumbar Lami L5-S1), have had a Buccal Mucosa Graft Urethroplasty (I have Urethral stricture disease with recurrent strict=reconstructive surg) and have since had two stricture releases within a one month time frame... oh, I also have severe SI Joint issues. I go to Pain Specialist and he treats my CP as it relates to my ongoing radiculopathy in my lower back and leg. As a result of these past two urological procedures and my daily self cathing, I have severe pain in my hips, SI joint, coccyx, bladder, and testicles... I am presently on an antibiotic since I spiked a fever a day or so ago, but this pain is unrelenting, and no-one will treat it, not even my Urol... . . even after my last surg procedure, wherein I awoke to an indwelling cath and severe pain from the stricture release, he came to check on me, and said "No narcs for you, you have what your PM doc Rx'd for you" Wha??????

So, this put me in the position that I have been put in time and time again (the other urol, did this as well... UNDERRx'd me), wherein I HAVE to take what I have to stay ahead of the pain at a greater frequency, so whereas I am supposed to take "x" amt x 4 a day, I HAVE to take "x" amtx6-7 a day (you can do the math... I run out early=not real good in my PM docs eyes, but he said last time, one day after my Urol surg, when I was apologizing for coming up short=2 weeks short, "Its OK, I'm becoming more tolerant of this")... . These pain meds are the only thing keeping me going... . My Psych. (who is also an Addictionologist) seems to agree with me about the genesis of my pain, so no meds for depression, as any depression I am having is purely situational... I just don't know who to speak with concerning this issue, my insurance won't cover either my PM doc OR my Urol. as they are pre-existing conditions, so I can't afford to keep going back to them... especially my PM doc, b/c if I go in there asking for more meds, he'll be required to take a pee test, which I'm not worried about the results or anything, I'm worried about the BILL... WITH insurance last time, it was 300$... . I have a Neuro, should I call him??? With all of this going on, I KNOW (I'm a Lisc Health Care Provider btw, so I know my anatomy, neuroanatomy fairly well... well, enough to be dangerous) a pain feedback loop has been estab. and my pelvic floor muscles WILL not relax... I asked my Urologist about Pudendal Nerve Entrapment, and he just looked blankly at me... .

I am also fully aware of what my behavior looks like at face value... . "pill seeker", but NSAIDS don't work, and I don't want to tax my kidney any more than it has been (have also had a kidney stone get lodged in my ureter RIGHT after my disc blew out)... I'll just say it, stigma or no, narcotic analgesics are the only thing that work for me... . I've tried Tramadol, Ultram, Ultracet, and they just make me feel like I want to run a marathon or talk someones ear off, plus, last time I took them, my BP was 177/125... so <<those are a no go for me. Also, no go on Neurontin or Lyrica, Elavil, etc... . I have too many pills that I take, and I don't want to take more of something that MIGHT or MIGHT NOT work for me when I know darn well what does work for me... . I'm not asking for Fent, etc... . I just need something for the pain that is not related to what my PM sees me for
Any suggestions... . should I see my Psych, or Neuro (also, both of which aren't covered under my insurance)?? Suggestions? Help.

[Jay]

Hi Russel,

Very sorry to hear about the difficulties you're going through. All of us here can sympathize when it comes to chronic pain. I'm just a layman who happens to have read a lot, but I'll try to offer some observations.

Your situation is obviously complicated by the fact that you've had so many surgeries. The back procedure is outside of my knowledge, but I do know that we've had some guys end up here following stricture repairs. That's kind of a "damned if you do, damned if you don't" situation, because the strictures can't be left in, of course.

I'm on pain management, myself. I take Lyrica, Clonazepam, Tramadol, and Tizanidine. As you may be aware, this is sort of a multi-faceted regimen, aimed as much at the muscles as it is the nerves. While I realize that you don't want to add any more pills to your collection, if the ones you currently have aren't working, there's little harm in attempting alternatives -- under a doctor's supervision, of course. If your current pain management doctor refuses to take available measures to address your pain, particularly with well-documented causes, then I'd humbly suggest that you need to find a replacement.

Regarding the urologists, their refusal to adequately prescribe is not surprising. Most doctors do this, which is why there's an epidemic of under-treated pain in our country. Having said that, when they tell you that your narcotic prescriptions must come from your PM doctor, that's not always bad or wrong. Some PM doctors get downright alarmed when the pain meds come from anyone but them, as they'd rather get rid of you than have even the implication of a pill seeker on their books. It's very frustrating, but that's how it goes.

Personally, in your situation, I would be pursuing disability for assistance with your medical bills. I'm awaiting a court hearing to get SSI, myself. We are also very big proponents of pelvic floor physical therapy here. I don't know if it'd work for you, but it's something to consider, and we do have a plethora of info about it on the boards and the main site. Pelvic floor PTs often have skills with addressing SI joint dysfunction, too.

Finally, with regard to PNE, that's not really a theory we subscribe to. Just about every doctor you ask the question of is going to repeat that blank stare, because it's an almost unheard of condition. Whether it even exists is debatable.

[russeld]

Thanks for your reply. I am on Xanax, Xanaflex(what you take), Perc, and Clonopin, so yes, I am aware of the interplay between all of these, and this combo has/IS working, but just not at the level of frequency at which one particular class of med has been Rx'd(Perc)....I am in pain, but the level and frequency at which I have established is working for me in order to be functional, but that soon will not be an option, as I will be out of that particular med...THATS why I need something for breakthrough, so I don't create a higher tolerance for what has been working for me at a lower dosage**(Thats what got me into this whole mess in the first place, whenever I would go in for my urethral dilations, wherein they usually give Versed and Demerol, after a year or so on CP management, my tolerance was SO high, I would be completely coherant and hold lucid convos with the doc while he used his sounds to dilate me...after a couple of these times, one where I flinched and ended up hemmhoraging and him creating a false passage in my urethra...we opted for a "fix", thus the Buccal Muc....well, THAT didn't work, and we're back to square one).
**I had started out with my CP doc at a higher dosage and was in the process of titrating my dosage down and had several months of success with me on a lower dosage, but now, with all of this...I feel like I've been forced back into creating a high tolerance again by default.

[webslave]

Russel, you have a complicated case made worse by a lesion in your urethra. You also have what looks like a problem with tolerance to highly addictive opioids. What is the daily dose of Percocet you require?

There are many forms of physical therapy, as you will be aware since you are a LMT (Licensed Massage Therapist). One of these forms is Trigger Point Therapy. You need to get to someone who can give you this specialised form of massage therapy intrarectally. If this can resolve the pain symptoms, you will be able to wean yourself off the pain meds.

[russeld]

Hello Admin... thanks for replying... My dosage of Perc that I use now is 7. 5 mg (It was 10 mg, but I asked for it to be lowered)x 6-7 a day (It is Rx'd for 4 x day)... so, Instead of 6 hour intervals, I've found that 3-4 hour intervals work for me... like I said, still have pain, but this works for me, at least now.

I have been doing some myofascial tp release intrarectally, but have stopped as they seem to create a reflex arc of spasm (Fight or flight)... . there are other psych. sexual abuse issues in that area that have yet to be resolved... so, not only is there measurable genesis to my pain, there is also, I and my psych believe, that this childhood trauma has a lot to do with it. I am in a perpetual state of muscular guarding from one source or another, so once one problem is resolved, or seems to be, another rears its head... its a vicious cycle

I truly hope to be able to resolve these issues as they are eating away at me physically, $, and somewhat emotionally/psych... . especially the daily Cathing... omg
Like you said, I am an LMT, but also an OT, and am certified in NeuroMusc Ther... . so its like a "Dr. Heal thyself"thing.

Oh yeah, yesterday, I was emptying the dryer when all of a sudden it felt like I was being stabbed up through my rectum/perin. area into my bladder area... and I have had a kidney stone before, but THIS WAS WORSE... it lasted about 15 minutes and lying down was all that helped.

As far as being dependent on a highly addictive opioid, I'm not too concerned about whether or not I can control myself with the meds, its just that I can't control the pain except via these meds... . If the body/mind connection can't collaborate, or won't, its all I have to fight this battle... I've already shown my true colors as far as intent goes with my PM, as asking for dosage reductions usually aren't red flags for someone who is becoming addicted to a substance... this is just been going on for so long, and there are too many cooks in the kitchen.

[webslave]

Percocet contains acetaminophen, and the total daily dose of acetaminophen should not exceed 4 grams. Just be careful of that!

That sudden pain you describe sounds like proctalgia fugax, not serious, may sometimes be hemorrhoid-related.

You sound in some ways like a classic patient, an ideal candidate for Wise's clinics, or one of the better PTs we recommend.

[russeld]

Should I go to my Neuro to get a referral to a physiotherapist who specializes in this, and get an MRI as a baseline (since I've fallen very hard on my coccyx twice since my back surgery)... . I'm wondering also, if any of the scar tissue from the Buccal Mucosa Graft Urethro, has wrapped around ligaments/and or nerves and hyper epithiliation (sp) is occurring inward... . I know that I still have major inflammatory responses in my lip where they took the graft, so it would figure that where they out it would be just as susceptible to the inflammatory response.

I think you are right... I would be a classic patient, but its all in connecting all the dots and finding that right combo of therapists and docs around here... . . But in the meantime

[webslave]

In your shoes, I'd go to a skilled PT (known to be an expert in the field of chronic prostatitis / chronic pelvic pain syndrome and trigger pt treatment) and get assessed. Someone like Tim Sawyer in San Francisco area. If a person like this finds you are full of trigger points, then MRIs and other investigations are a waste of money. Please fill in your signature and also indicate you LOCATION in your profile.