Can't Stand the Pain!


#1

Hi, all–

I’m not sure what’s going on but the pain, which has been constant for over two years, is now totally out of control again. It’ staying way too high for too long and sometimes I feel like my brain just can’t take any more. It’s keeping me awake too much of the night and during the day is stopping me from everything. I can’t even eat a bite of something or a sip of liquid without it getting even worse, even when I don’t think it could get much worse. I’ve had days where I’ve used more than twice my “allowed” dose of pain meds (the pain doc is okay with it since the monthly amount usually seems to level out)-- and it never goes down to even a tolerable level anymore, really. I keep a smile on to “protect” everyone I know from it, but I know that ultimately that’s not fair to either them or me. The reality is that there are tears behind the smiles and it’s getting very hard to handle since I can’t even get it back below about a 5-6 even in the “good” moments. At least there are some genuine laughs and smiles still there, too. But add in the daily nausea and being back to barfing sometimes and it’s a really fun (NOT) flare of pancreatitis!

I know I likely have a biliary/pancreatic duct blocked again, and am hoping when I go to Mayo in about 10 days that they’ll be able to dilate the duct through the EUS they’ll do the first day. I just don’t want another ERCP! Every time it’s led to horrible flares, even to where my Amylase/Lipase levels actually still skyrocket (where most of the time, even in a flare, like most if us, they’re normal). I can’t handle getting that sick again. I also don’t think I can handle being back on TPN again (I still have my Mediport)-- especially after going into septic shock and hearing the “you could have died” thing again (also about 5 times that prior year at Hopkins before each ERCP). It got too scary and I can’t imagine risking it again (and I have medical training and really good technique, but the infections are always a risk, I guess).

I don’t say this much at all, but I’m really, really getting very scared of the pain level. I’m trying so hard to manage it at home until I go to Mayo-- and can’t imagine right now even making it through the plane flight. I wish I weren’t allergic to so many med classes so I could get better control-- I’d try anything at this point, but no doc has anything else to try and I feel like they’ve given up.

I know we all do, but I hate this disease more than anything I’ve ever had to face-- and I just needed to say that, maybe for all of us. We’re the only ones who can every ‘really’ know what we’re going through and how bad it can get. It’s just not something you can accurately describe to someone who hasn’t experienced this horrible disease, although they may tried hard to “get it.”

Thanks for “listening.” I just wish there were a way to get the pain back under control, even a little, or even for a short period of time to have a break.

Thanks to everyone who’s been writing and hugging-- I know many of us are going through this together. That’s what makes it more tolerable at times :slight_smile: and I hope you all can enjoy the Holidays and New Year!

Hugs to everyone,

Lisa


#2

I’m having one of those weeks too…I haven’t been diagnosed as long - only for about 6 months. But I know how it is to force that smile on your face, every time my mother calls, “Well, do you think you can go back to work??” I told a close friend that I feel like I have been “faking well”

The last time I was on a plane in the midst of an attack, the flight attendants were very good to me so I would encourage you to tell them your situation. They would probably do anything to make you more comfortable.

As for other things I do for the pain…I refuse to take narcotics. I know, I’m crazy. I’m sure I’ll lose that fight one day. But, I just try to put myself in another place. It’s hard to do when you are in pain but I picture a happy safe place and eventually I go off to sleep for a few hours - until my mother calls again. :wink:

Fortunately, my anti nausea pills work great. So, I have found ice cold water makes my pain numb too. My doctor told me that is completely ridiculous, there isn’t a medical explanation for it. But, he said if it makes me feel better then I should keep doing it.


#3

Lisa,

PLEASE keep your beautiful smile on your face. I know how hard it is to smile through the pain but sometimes, it actually helps a bit. You know that prayer is powerful and we are ALL praying for you all the time. Only a few more days until your procedure…hang in there knowing that we are waiting on the flip side to hear your good results!

Bless you always and take good care.

Hugs and prayers for pain free days and nights

Teresa


#4

Dearest Lisa,

I’m so sorry that you are in so much pain. I can understand what you are saying. Because with the loss of weight I feel the pain all the time more and more and unless I gain the weight it is not going to work. We need to have some buffer to tolerate the pain. My bones and skin are showing up and I can feel the lymph nodes. Few yrs back I got so scared and went to Dr. and he asked the surgeon to see me, he said, when there is no buffer you’ll feel everything in your body. I can feel my tube reacting whenever I drink water or eat little bits of crackers etc. The tube site pain is unbearable. I’m still waiting to gain weight. I gained couple of pounds and lost them. This is going on. I have few more Iron treatments.

I go to pain clinic every month. After my doctor left the clinic it took almost one year to get a replacement and I’m glad that he is as nice as the first one. We really like him.

Last month he prescribed the new medicine and started me on very low dosage because I get all the side effects and then I have to stop the medication. I tried the medicine only two times. Because I want my husband to be home when I try new medications. I go into hallucinations. But this time nothing happened but I was so drowsy and dizzy. I couldn’t even sleep or stay awake very uncomfortable feeling. But I did not feel the pain. So, I have few questions which we are going to talk and then take it regularly if I get proper answers. The medicine’s name is LYRICA. Interestingly, I haven’t seen the ad on T.V until very recently and they are prescribing for the Fibromyolgia. If you haven’t tried the new medication you can ask the doctor to prescribe and maybe it will help you to stay home until you go to Mayo. I really didn’t feel the pain for a long time. I took it when I had an attack last week. It worked for me and stayed home.

Good luck with the medication if you haven’t tried yet. This medicine is a new one and they were using for the nerve pain and now they are also using for Chronic Pancreatitis and also Fibromyolgia.

You are in my prayers and thoughts. Remember whenever you need do not hesitate to call me or send me message, I’m going to be always there for you just like all our friends on Care Place.

Love and hugs,
Durga.


#5

Oh Lisa,
I am so sorry you are in such pain. I know what you mean to hide behind a smile. Everyone “wants” you to be ok, but your not. Please know I am thinking of you and praying that your pain would ease. It is just something people shouldn’t have to go through.
(((HUGS)))
Keri


#6

Hi Lisa,
I hate to see that you are in so much pain. I’m sorry that it hasn’t gave you much relief for a good while. It’s something you wish the doctors could feel that pain for just 1 min. and they would understand what everybody with this cussed disease goes thru. I bet they would work with us alot more co-operative and more dilligent. Try to take care of yourself!!! and keep us posted. Love and (HUGS) Larry


#7

Thanks for all the posts, notes and hugs!!! They’re like my glue (keeping me together at the toughest times!).

Does anyone else also get really tight in their body, like a form of agitation that’s almost unbearable, when they can’t get the pain down? I’m not sure if it’s from pain or from the nausea meds side-effects again. Maybe I need more of the Benzo’s that cancel that side-effect out. It’s like the dyskinesia and akathesia I was getting before, but it seems worse when the pain is worse or I hesitate too long to use a prn med for the pain. Either way-- thanks!!!

Also, thanks for your note, Durga-- I’d been told not to try Lyrica (I also have peripheral neuralgia that started when I was a teenager and hit by a drunk driver and left in a coma, as well as parasthesias from a spinal injury in the Air Force, so it was recommended for this originally) since I had bad side effects with Neurontin and others in that same class.

They said that if the Neurontin side effects were bad, the Lyrica would be the same or worse-- it’s chemically very similar. My brother couldn’t take any of them either.

I’m SO very glad it seems to be helping you, though-and hopefully it will help someone else out there… that’s what I love most about all of us sharing info.

I wish there were any class of drug I could take to help with the pain other than Tylenol and Fentanyl. It gets frustrating. Too many other classes have been ruled out due to allergy or sensitivity or bad reactions (including all the great tricyclics and seratonin meds, unfortunately). And they don’t want to implant anything beyond my central line because of the Ehlers-Danlos, Classical Type I was born with- it can cause me to tear and perforate/dislocate, etc. very easily. It’s always a fear in surgery or procedures as well.

I think it’s part of what I can’t find other options and often feel like the docs, even those who genuinely seem to care, have really given up. I just can’t afford them to do that-- someone has to keep trying and find a way to help with some part of this.

I can only hope that with all the caring and help here on CarePlace (special thanks to all of you, again!)-- and all the love and prayers, encouragement and support, that Mayo will have some sort of “magic” to offer. I’m probably most scared that they won’t, and then I don’t know what to do at all. I’ll worry about that when or if it happens, though. I don’t like to focus on what isn’t even there yet. For now, just having another incredibly bad day-- the pain is spiked way back up, I can’t seem to eat or even drink much-- and am just holding on for the trip (thanks again for the suggestion to talk w/the flight attendants! Great idea–

Thanks again and I love you all for all the help!

Many hugs back,

Lisa


#8

Ooops, forgot these… I found a link to some funny videos on YouTube about the pancreas. They’re worth watching to the end:

Enjoy and smile!!

Lisa


#9

oh my gosh lisa !!!n how funny, only we would see the humor in this one !!! loved it

Julie


#10

yes I get this agitation too and it is like a churning inside the digestive system as well. I fell like I m in a panic mode and there is nothing I can do. It is the worst feeling and it lasts for a while.