Back on duty, for now

Been gone a week, kind of helped to clear my head, but other than that, didn't prove a lot.

Still don't have any new answers for what ails me.

Very frustrated at the slow pace sometimes, still waiting 1 1/2 months later for a referral to the CRPS specialist, thinking about just forcing an appointment on my own.

Have had some terrible high level pain days the past week, worse than ever before, hits me about every other day.

I see my doctor in 10 days, and unless a miracle happens before then, he will see a slightly less friendly side of me, still haven't heard a word about the Duke specialist either, yet every day, I am still suffering from the bladder spasms on top of all  the other pain issues.

During the past week, even shut down my FB account and a few other places I hang with on-line, but none of that helped either.

I find in my heart, I am more useful being here than not being here, so here for now, unless I feel another burn out coming, I will continue to do my own part, my own way, here at HW.

david in sc

Nice to have you back.

Sorry to hear of the continued discomfort...

David,

Hardly know what to say.  Having endured a pain so bad that I would have given just about anything for a few minutes of relief as a result of a kidney stone, I would like to say I know how you feel.  But in reality I imagine the pain, the constant pain, is 100 times worse.  You are in my thoughts and prayers, if that counts for anything. I appreciate the fact you have returned to this community.  It means a lot to us, myself included.  Hopefully when you are reading and typing it will take your mind of your pain for a few minutes anyway.  Seeing what my mom and dad went through in their final weeks and days and reading your comments and thoughts helps me understand that while long life may be  desired it is the quality of that life that is most important.  No one deserves to suffer they way they did and the way you are now.  And as you said, it has to give those of us who have had PC pause as to what our future may hold. 

Jim

David, you are a definite candidate for Fentora. In addition to PCa I have Hep-C, OA, Osteoporosis, high level Tinnitus (which makes me fall around 3 times a week), and C-Apnea. Not to make this "Queen for a Day" here, just want you to know my daily routine. Fentora, along with Oxycodone 30s 8 @ 1-2 every 4 hrs has done a good job on my muscle pain.For neural, it's Cymbalta,90 mgs one a day and Abilify, 2.5 mgs a day. This schedule has to be kept to religiously . . . miss a day and its 3 days of hell. I just finished one of those episodes and I honestly can sympathize with your symptoms. Whenever I feel my base level pain, the PC goes right out the window, it's that bad.
The most recent episode was the,once again, fault of the pharm not ordering my Fentora in time.This IR sister drug to Fentanyl knocks your pain out in 10 minutes. It stops my pain cycles from escalating into what you describe. This is my sixth year living this way and it wasn't until 3 years ago that I discovered Fentora. My onc is more than happy to not only Rx it but to fight with the Ins Co. to get it for me for free. Please, give it a try and feel free to email me about its uses and SEs. Currently, I'm taking one 800 mcg on awakening and then I spread 4 600 mcgs throughout the day, prn. If you are on Medicare, you can get it free with a good advocate . . . otherwise my Rx would cost around $11,000 a month . . . Q

..David, I am new here and new to all that involves PAc. It seems I will be around HW awhile cause a cure for me is on the fence at best. As far as your situation you have every right in the world to feel the way you do. You have every right in the world to let it out, let your pain be told especially here on HW. I am sorry for all the suffering you endure daily. There is no way for people that are not at that stage to truly understand. But, here at HW we are a family of sorts and we listen to each others complaints and then send good intentions. I would love to see your pain absolved. Keep the faith as long as you can brother, we are a pulling for you..

............Nick.............

David, thanks for the kind words and for understanding that I wasn't going for one-up-manship type crud. You hit the nail when you wrote that nothing short of IV would knock out your pain. That is how the FENTORA works. I tried the Fentanyl patches for 4.5 years and good as they are they don't have the speed of delivery that is necessary with your . . . our . . . type of pain. You need something FAST and that is what FENTORA delivers. I'm capitalizing here to emphasize the huge diff there is between the delivery system of the two sister drugs.
I read your posts on the CP forum as well and It makes me wish that I could somehow get your onc to write you a script for a month, the diff it made in my life was amazing. I got off the Fentanyl and was able to drive again and the frequency of bone-crushing pain attacks dropped by 80%, it seems. I've been on this pain regimen for just over three years and there's been no increase in tolerance, in fact, I tried going with all 5doses of the 800 mgs and it didn't work near as well as the one 800 and 4 600s. Go figure . . . Best of luck and the Least of Pain . . . Q

Hey David,

Just wanted to chime in and agree w/ what Quincy is saying re: the oral fentanyl (be it Actiq or Fentora).... It DOES act just like IV medication and usually reduces pain within 10 minutes or less. It comes in varying strengths....

I would really talk to your oncologist about this. There's no need for you to suffer like you are - when there is something that I really think would help your pain. It will not "rid" you of it -- but, as you know, the point is just to make it bearable and increase your quality of life.

Even if you got a diagnosis of the CRPS -- I really don't think the treatment would be any different -- other than pain meds, nerve meds, etc (in terms of medications; there are, of course, injections, biofeedback and so forth).

I would be pushing to give this a try, David. If anyone would qualify for the oral fentanyl, it would be your situation.... It has greatly improved my quality of life (I use it for my migraines and intense back pain).

With concern --Tina

thanks quincy, tina, snow, and passages.

absolutely will ask my doctor about Fentora. That's a new one to me, but sounds promising. On the really bad days (as I described graphically above), what I have isn't enough. The Fentanyl is good most of the time, especially switching patches every 48 hours, but even a new patch can take hours to kick in. And I have been on Lortabs for so long (3 plus years), that they always react with me the same way, takes a min. of one hour to kick in, then I get 2 good hours, then 1 hour of fadingl away time. I take (2) 10/500 at the time btw.

yes, even if CRPS is diagnosed, the outcome is still grim to be honest. It's not curable, and it can be a progressive disorder. I appear to be at level 2 of 3 levels at this point. At level 3, its very hard to manage from what I have been told.

This pain, on top of having prostate cancer that has failed both surgery and radiation, and with a PSA that has been climbing fast, is a lot to deal with.

It really has become a QOL matter to me, and my QOL right now, couldn't be much worse, unless I reach the point where I am bed ridden or having to be drugged to the max to where I could no longer think clearly. Right now, that is not the case.

david in sc

David, have you looked into fibromyalgia? I've cut and pasted something from the American Fibromyalia website that describes what patients feel:

Patients must have widespread pain and tenderness in all four quadrants of the body (using a tender point exam), and although there is no blood test or biomarker for fibromyalgia, the diagnostic criteria are accurate; severe widespread pain is not normal and its presence should prompt a doctor to conduct a tender point exam. Current treatment methods are geared at relieving the symptoms, particularly the pain and the sleep disorder.

Pain - Fibromyalgia pain has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, stabbing, or intense burning. Quite often, the pain and stiffness are worse in the morning, and muscle groups that are used repetitively may hurt more.12 In addition, the severity of regional pains (particularly those in the head, neck, shoulders and lower back) are a strong predictor of a person's overall pain rating.13 The muscles in these painful areas can feel tight, knotted and rope-like. Pressing on the firm, knotted region hurts and often causes the pain to shoot to other muscles when a myofascial trigger point is present.

Fatigue - This symptom can be one of the most incapacitating for people with fibromyalgia. Patients may feel as though their arms and legs are weighted down by concrete blocks and their bodies may be so drained of energy that every task is an effort.7

Memory and Concentration - Difficulty concentrating and retaining new information may seriously interfere with everyday mental tasks.14 This symptom is referred to as "fibro fog" and may hinder job opportunities. In particular, fibromyalgia patients have serious difficulty retaining new information if they are distracted.15

Sleep Disorders - Patients report trouble falling asleep and more importantly staying asleep, but the unrefreshing quality is what makes the disorder much worse than insomnia. Repeat arousals prevent patients from reaching deep, restorative sleep.16 As a result, the night is spent in "quasi-sleep" and patients wake up feeling as though they have been run over by a Mack truck. An overnight sleep study will likely show repeat arousals with bursts of awake-like brain activity occurring throughout the night, but a specific sleep disorder may not be identified.17

Exercise Difficulties - Moderate intensity exercise activates a powerful pain-relieving system in healthy people, but it makes the pain of fibromyalgia worse.18 This is why initiating an exercise program may make you achy and tired. However, if you do not exercise on a regular basis, the performance of normal daily living activities will start to cause more pain. Rather than give in to the increased pain sensitivity related to exercise, patients are advised to do mild exercise in short intervals (such as five minutes at a time) to keep the muscles fit while not over-taxing them. A study in Sweden revealed that half of the fibromyalgia patients found it impossible or difficult to climb stairs and a majority of patients could not run. Just standing for five minutes was extremely taxing to one-fourth of the patients.19

Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain and bloating, abdominal gas, and nausea represent symptoms commonly found in roughly 40 to 70 percent of fibromyalgia patients.20

Chronic Headaches - Recurrent migraine or tension headaches are experienced by 50 to 70 percent of fibromyalgia patients. Most headaches are rated as severe, occur at least two times per week, and often have a migraine component.21 Referred pain from myofascial trigger points in the shoulder, neck, and head muscles are suspected to be responsible for most tension-type headache and also play a role in migraines.22

Jaw Pain - Temporomandibular joint dysfunction causes tremendous jaw-related face and head pain and affects one-quarter of fibromyalgia patients. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.23

Other Common Symptoms - Non-cardiac chest pain, acid reflux, irregular heart beat or palpitations, shortness of breath, numbness and tingling sensations, the feeling of swollen extremities, chemical sensitivities, nasal congestion, premenstrual syndrome and painful periods, irritable bladder, interstitial cystitis, vulvodynia (vulvar pain), difficulty focusing eyes, dry or burning eyes and mouth, dizziness or feeling faint, profuse sweating, muscle weakness and balance issues can occur.24,25,26 Fibromyalgia patients are often sensitive to odors, loud noises, bright lights, some foods, and often the medications that they are prescribed.27

Aggravating Factors - Changes in weather, cold or drafty environments, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety, and over-exertion can all contribute to fibromyalgia symptom flare-ups.12

David,

Ask your doctor about using oral fentanyl, either in the form of Actiq (the "lollipop") or Fentora (the "lozenge")... I've used both and they are both pretty comparable.... Since they are both "on label" for cancer pain, I think you'll have no problem getting approval -- but should you run in to a bump w/ it - let us know and I can point you in the right direction.

I'm w/ Sephie -- I've often thought that the symptoms you have resemble fibromyalgia. Not only the pain, but the sleep issues and so forth. Just something to think about..... Once again, not sure how much this actual diagnosis changes the management.... other than trying one of the main fibro meds (like lyrica, cymbalta, etc).

I think your symptoms much more resemble severe fibromyalgia than CRPS.

I would be really open minded and talk to your doctor about the oral fentanyl ASAP. My gut instinct says that this will dramatically help you David.

I know you worry about being "drugged", David.... but w/ your QOL being as diminished as you say -- it's worth giving the oral fentanyl a try. The doctor can start you at one of the lower doses (200 or 400mcg for Actiq, or 100 or 200mcg for Fentora)....

Years back, I thought I'd never, ever be stable w/ all of my pain issues.... and this medication has made the difference between being in severe pain/being home bound many days - to me actually having a decent QOL these days. I pray the same will happen for you.

--Tina

My doctor had already ruled out fibro in the past, as did my long term GP. The CRPS seems more likely, because it can be triggered by trauma from surgery and even radiation. In the 2 years before the worse of the symptoms appeared, I had underwent the trauma of a heavily flawed major radiation even, followed less than a year later, by the Ileal Conduit Surgery, which in itself is a major traumatic surgery. Six months after surgery, while my body was healed so to speak, the chronic pain began, and has slowly but surely, spread from one area to the next, and encroaching on more and more regions in my body. Very classic symptoms of CRPS.

Not interested in diagnosing myself, will leave that for the real doctors. My last visit with my oncologist was a good visit, but the follow-up has been poor since. That is my real disappointment.

Tina - I will bring up the subject of oral Fentanyl with the doctor next visit.

And SB, I have been on 3 of the mainstream nerve meds, and not one of them ever did me the slightest bit of good.

david

Glad to see you back, big guy!

I'm really just trying to help. The only reason I mentioned that I hadn't heard you mention any of the nerve pain meds in the last few years was to specifically say that many times a med that hasn't worked back when, can be helpful now a few years later. We see this time and time again on the chronic pain board.

So, I was just trying to suggest to not rule out trying out different combinations as any PM Dr. will likely recommend these meds to help with your nerve pain and muscle spasms. As you have already found, taking only opiates are not enough to handle the types of pain you have.

We are all just offering thoughts/suggestions for you to discuss with your DR. as it will be your first time with an actual PM Dr. So those of us with experience in long term chronic pain and with PM Drs. are sharing things that we have learned.

Just like you all do on the PC board here for those that are just getting started. Obviously none of us are Drs. and no one is trying to be one when we offer things to bring up with your Dr. It's all about passing on knowledge that others have learned and sharing it in case it may help.

And the part about being the Fibro and CRPS was only to say that the Drs. who specialize in this are either a PM, Rheumatologist, or Internist. So wanting to make sure that you get seen by the best possible specialist to help with your pain.

I think many of us both on the CP board and here on the PC board are just frustrated for you as things seem to go way too slow in their referrals and we want to see you get better treatment with your pain!

Post Edited (Snowbunny21) : 5/20/2013 8:05:31 PM (GMT-6)