Avatar universal

Enjoy a little bit of hope this Sunday...

Not truly a question for the community, I'd like to share my first 24 hours with a new medication which has brought me the first glimpse of hope in 6 whole years of solid, around the clock, disabling intractable pain.

I am blessed in many ways, unfortunately health is not one of them. I have succeeded cancers, excited specialists ("never in my wildest dreams did I hope to ever see a case in person, let alone treat!") been challenged by severe and unrelenting long infections. I can't list all I am currently going through, not due to HIPPA or because I doubt you would understand or because it would bore you mindless but because I just...can't. To list everything in black in white would be to acknowledge the deep hold my failed health has taken from my life. That's too much acceptance. Even as I type this I visualize my hands over my ears, "lalalalalala!!!!! I'm not listening!!!!!"  

One of my central deficits is a genetic affliction, Variegate Porphyria. For nearly 2 years I have been completely bedbound from inadequately treated abdominal nerve damage. It has never been that my doctors do not try or do not understand; there are lists of medications I cannot take, others I am allergic to, still others I have genetic resilience to. My options are limited. Hydromorphone is a medication I can take and seems to help but everyone has always been too intimidated to Rx a truly therapeutic amount. I have been assured by the 2 pain teams that have worked with me that I am a perfect candidate for a hydromorphone pain pump. But. But first I must infection-free and off antibiotics for 6 months. I am teased and tantalized, "It would be perfect for you. You would only require a miniscule amount to be completely free of this abdominal pain. No hills and valleys, the amount of medication would be constant. You would be able to join your family for holiday meals and if the pain increased from the added effort you could trigger a bolus to compensate."  So, you are thinking, why is this whiney b***h complaining? Nothing is ever simple, is it? Well, aside from the nerve damage and the pain and the disability, Variegate Porphyria induces a somewhat vampiric sun reaction. No problem. I'll just walk my dogs at night...(wistfully sighs at the memory of being able to walk the dogs...) However, as many of you may know personally, when your body is challenged by intractable pain for any length of time, you weaken. Insomnia ensues. Atrophy, general weakness. And infections. Nothing as common as an ear infection. No. Where someone else may chip a tooth and require a few days of antibiotics, I'm hospitalized with a jaw infection. My right hand is disabled and disfigured, a reminder of the osteomyelitis with septic arthritis. Surgical removal of necrotic bone and tissue. Almost 2 years ago and I am still not cleared to cut my own food. Just now remembering the doctor's indignant shocked face as he yelled at my 17 year-old son, "Why would you let her cut her food? She hasn't been cleared to cut a banana!"  Antibiotic free, so easily attained by most everyone else the world over, seems far too lofty a goal for me. For 6 months! May as well be 60 years. Rare and unheard of infections love me. Most people go to the doctor when they feel under the weather, I cancel my appointment and hide!  "We're going to have to admit you, set you up with a picc line and home nursing care, your labs show septicemia, you'll be on IV antibiotics for a couple of months." I don't trust follow-up appointments. They corner me in a tiny exam room and try to make me stay. Is it strange and so very 'Lala Los Angeles', they always bring in a cot and let one of my son's stay with me and the last time they also insisted I could keep my dog in the room. Which seemed ridiculously unsanitary, I had black circles of dying necrotic infected skin from where that devious sun had snuck through and got to me. How could it be advisable to invite my dog to stay with me? "Just relax, rest up a few days, try to think of it as a little holiday."

I've only now just realized. I'm rambling! Through hills and valleys, around bends, rambling. Back to my good news!  The one Pain Management Team was so hesitant to try a fentanyl patch because of all my sensitivities and problems, "Dilaudid works. Stick to what works." Is it really working if it only lessens the pain to the extent that I can roll over unassisted?  The other Pain Management Team voted to try the lowest dose patch, 12.5 mylan brand, along with my regularly Rx'd oral hydromorphone in case there was no effect. I placed it last night at 10:30pm. Still, didn't sleep but...I was able to sleep a full 4 hours this morning! And in my dream.....(wait for it.....) in my dream, I was pain free! A couple of hours ago one of my sons brought me a bowl of tomato soup and I ate the whole thing. I still feel the pain, does this make sense? It's still there but it's different. It feels more like a tenderness. ::Sigh:: Dare I say, it feels more like normal pain. It hasn't yet been a full 24 hours but this is the closest I've felt to hope in 6 years. This might work. I might be able to go someplace with my amazing sons! Maybe the park. Sit on a blanket and laugh and watch them play Night n Go Seek. Of course, one of my older boys will drive and it will have to be after dark, baby steps...but I can see it. And we'll bring the dogs!

6 Responses
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8725523 tn?1399590462
I love that you have found hope and some relief!  I'm so happy for you and I will pray for continued pain relief and "good" days!!
Helpful - 0
7721494 tn?1431627964
Long-acting opiate pain medication has many benefits, but the best is that you can go for many hours without thinking about dosing (when the dose is right.) This is often essential for sleep, and if you can break the insomnia cycle, your pain will reduce naturally.

Hydromorphone is one of the best medications for breakthrough pain, but its use can rapidly build up opiate tolerance, so always take as directed.

Hope the fentanyl patch gives you the level of pain relief needed to experience life again.

Best wishes.
Helpful - 0
9050293 tn?1401390027
I am SO glad to read your story and it brings tears to my eyes because I know exactly what you are talking about.  I may not be able to relate to the same type of pain you are experiencing but for me it wasn't until I was giving the Fentanyl Patch that I felt enough relief from my pain to enjoy my days and be able to think clearly!  I was on Oxycotin and Oxycodone prior to the Fentanyl patch (many other drugs were before these but these seemed to work the best) and I was having problems thinking straight and losing my thoughts mid sentence and I am an analyst so I need to be able to think!! LOL

Well I went through gastric bypass surgery in May of last year and the pain management team from that hospital put me on the Fentanyl patch and Oxycodone .... wouldn't you know that I thought I was in heaven!! The pain level went down so low I could actually function!!  My pain was like yours in that it didn't go away but it was tolerable and that was a blessing!!

I hope that the patch continues to give you your life back as it did me and so many others.  Reading your post brought tears to my eyes because you have been through so much.  I too have kids and I know when my pain was out of control I can't do anything with them and my youngest are 8 and 4.  So I am praying that your pain stays controlled so that you can go and do things with your family that you haven't been able to do up until now!!  Take Care!!!
Helpful - 0
Avatar universal
Thank you so much for your feedback and support!
It has now been a few weeks since starting the mylan brand matrix-type 12.5 fentanyl patches. While they thus far have not conquered my pain completely I have to say that this is the first time ever that I would consider my pain is being "managed". Any other treatment was so trivial and ineffective that it wouldn't matter how much I was given, it didn't matter if it was given IV, IM or orally, it simply barely touched the pain I've been enduring. 12.5 mcg is definitely not the correct dose yet but now we're talking apples to apples instead of apples to elephants! The way I tried to explain it to my PM Dr is that once the fentanyl kicked in it was clear that the level of excruciating pain was effected enough that I could reclassify the pain; I am still in pain but it's not that never-ending mind-warping insane pain, it's more like the tenderness type pain you have after awakening from abdominal surgery and before any post-surgical meds kick in. More like a raw-delicate pain that feels like it's healing, like there could be an end in sight. The first 10 days or so using the patches felt incredibly optimistic. I drove for the first time in 2 years, dropped my youngest son at school! I realized I could set appointments for all those things I could in no way do like going to the dentist and all of the medical appointments that weren't a top priority. I went with one of my sons to the market. I waited in the car while he did the shopping but there is no way I could have handled sitting in a car for 20 minutes prior to this. Then last Thursday I blew it. I had arranged for a repairman to come to the house. I was on my feet going over the work that needed to be done and I felt fine. Then at exactly 25 minutes after he arrived I just knew, bad things are about to happen. I had one of my sons take over and went to lay down straight away. The excruciating pain hit me like a wall and while it wasn't actually any worse than it has been for the last 6 years, since I had finally experienced some real relief the difference between the 2 was too much for my mind to handle and I basically broke my brain. It took everything I had just to concentrate on not losing my mind. How sad is my life that I cannot be on my feet for half an hour?

Basically, "doing too much" triggered a porphyria episode. When I went back to my PM Dr a couple of days ago it took my son to convince him that yes, the fentanyl was a good thing, that I really needed a higher dose and to try to do nothing even if I thought I could do minor things...until I learned to recognize my limits. Because standing and talking to a handyman for 25 minutes was just insane and I shouldn't have done it. So he rx'd the next bump up, the 25 mcg. He was hesitant because from his perception I had very little to nonexistent relief. My post surgical analogy made him think that the level of relief was unacceptably low whereas I saw it as the most improvement I'd ever had! I put on the new 25 mcg patch and definitely, there is an improvement but I am spending most of my time in bed in the effort to avoid what happened last week. I am so afraid to do too much. And as nothing is ever simple for me...I didn't really notice that the manufacturer the pharmacy gave me for the 25 mcg was different than the 12 mcg. The mylan brand is the matrix type, the par brand is the gel type. I have and allergy to tegaderm type tape, I get 2nd degree blistering burns from clear medical tape. It's noted in "the system" so assumed the pharmacist checked into it and that the gel-type would be ok. Turns out I am allergic to the adhesive in the gel-type, my skin is now burnt and blistering. I didn't know what to do! Take off the patch to halt the blistering and give up the immense pain relief? I don't think so! I finally called the pharmacy, they said to bring in the unused patches and they would order the mylan 25 mcg for me as they were out of it. I got one of my sons to drive me, when I got there the pharmacist told me they were back ordered and wouldn't be in for 2 weeks. I guess my face spoke volumes because he told me to sit and he would see what he could do. I'm still shocked the length he went to. He sent an employee to the hospital to get the Mylan 25 mcg, told my son to take me home so I wouldn't have to wait there and told me my son could pick it up for me later in the day. I think he must have felt somewhat responsible for not realizing the par gel-type would cause the same burn reaction I get from tegaderm, which is noted in my pharmacy as well as hospital records.

So...overall...I am still very optimistic, I just realize I have to go slow. Just because this pain treatment is really helping tremendously with the pain doesn't mean the cause of the pain has been treated and I must be certain to always take baby steps. I think the pharmacist will always be sure to have the mylan fentanyl on hand for me as well. I'm pretty impressed with how accommodating he's been, I've read so many nightmare stories, I'd have thought he would have made me keep the par brand and deal with the 2nd degree burns for a month!
Helpful - 0
9501656 tn?1404649387

Pain makes you ANGRY

Pain keeps you AWARE

Pain jolts your body ALERT

Pain forces you AWAKE

Pain redirects your ATTENTION
                                                                                                                                                                                                                              Pain uncovers your truest AFFECTION

Pain visits you relentlessly and ABRUPTLY


Pain eliminates your previous AIMLESSNESS

Pain is your most skilled ADVERSARY

Pain is your companion by unavoidable ACCIDENT

Pain reveals your previously hidden AGENDA

Pain is the new birthplace of your ACCOUNTABILITY

Pain becomes your first labor's fruit of ACCOMPLISHMENT

Pain removes your determination's ABBREVIATION

Pain unfolds your life's hidden ABUNDANCE

Pain presents your most heartbreaking ANGUISH

Pain is never your comfortable ACCOMMODATION

Pain is forever your inactive ACTIVITY

Pain is the source of your most impressive ABILITY

Pain reveals your true AMBITION

Pain is the blossom of your most reluctant ACCEPTANCE

Pain is your source of heartbreak most AFFLICTIVE

Pain is your soul's shadow, transformed AFFECTIONATE

Pain is your negativity, rendered to AFFIRMATION

Pain is forever earthbound, redirecting you skyward, AIRBORNE

Pain reforms your fossil grimaces to glowing AMBER

Pain is your











D, '14

Helpful - 0
Avatar universal
I have been a lurker on this wonderful site for a few months, and I realize this is sort of an old post, but after reading your touching story, I had to create an account to tell you how happy I am for you, and how much I hope that you are still experiencing pain relief. I read about your myriad health issues and I actually feel somewhat like a whiner, using a larger fentanyl dose than you for mere back pain. You're an inspiration, truly. I'm sure you've continued to learn your limits and listen to your body. I had the same thing happen to me when I first started using fentanyl: I applied that tiny patch to my shoulder, went to bed, feeling very skeptical, but hopeful. I woke up the next morning and… I was cured! I could walk around like a normal person, I had full range of motion. I went to the mall and marveled at this new pain level of 6, something that was previously only attainable with mind numbing quantities of oxycodone. Riding the ferry home, I hit the wall. I was stuck in bed for a few days, I'd learned my lesson! How you describe the change in the quality (if you will) of the pain was spot-on. It's no longer in the forefront of my mind, it's just a bother that I deal with every other day when I'm changing my patch. I have been able to cut my oxycodone use dramatically, some days I can get by with no breakthrough medication! I'm a junior in chemical engineering school, and was having trouble due to my medications causing me to struggle academically, something foreign to me. I don't find fentanyl to be mind-altering in any way, unless one considers actually being happy and feeling like there may be a future, and it might be good to be an altered state of mind. I (think) I did well on my finals. I'm getting my life back. Reading your story brought tears to my eyes. I don't know you, but I wish I could hug you. No one deserves to live with the pain that you do, and I'm so happy that you've found some relief!

As an aside, I had a similar reaction with the PAR brand patches, and, in my experience, the gel reservoir patches weren't as effective as the matrix-type patches. You have an amazing pharmacist!
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