Make the pain go away!!!

Anonymous · January 2008

HannaB, VERY well written. You should be THE doctor. Perhaps everyone who is on any kind of meds that can be addictive should print your post in case our doc should suddenly decide we don't need it anymore. Oh, if these docs could live in our shoes. Some of them make us feel like drug addicts!

Shirley

Anonymous · January 2008

HannaB, that was awesome. Thank you so much to you, and all the ladies who have surrounded me with support and love. This has truly sucked to say the least.

I'm feeling pretty lousy still, and trying to desperately ration out my 10 Tylenol with codeine till Monday. I fully intend on making lots and lots of calls come Monday morning.

I do have to say that the anxiety of "what the hell am I supposed to do without pain meds?!?!" is lessening, but the pain is still very much there.

I do feel like I can now better pinpoint the pain. I wonder if that makes sense? A month ago I would say "I hurt everywhere," heck, even a week ago....now I can say "I have pain in my back, down my legs, I have dull headaches, I have a very achey ovarian cyst, and my arms are sore like I have been carrying 1 ton weights all day."

I think that is important progress.

The MS nurse asked me sheepishly if he could share my story with other nurses (regarding my pain struggles). I told him ABSOLUTELY. He wanted to know if he could so the other nurses could know what doctors have a kinder reputation.

Oh, if my story can help someone else down the road, then go for it!

Love and prayers, Deb

chemo072 · January 2008

Deb - pre-cancer, with fibromyalgia and ovarian cysts, I explained over and over and over how much pain I was in, and no one got it until I said - "it's like having really bad cramps 24 hours a day, 30 days in a row." That was when I got help. So, I sympathise with the ovarian cyst pain! No fun at all.

Best wishes with the pain mgmt docs. Also, if you have a good pharmacist (hospital pharmacists tend to be quite helpful) they may have better suggestions that your doc might actually listen to.

With fibro and taxol pain, which is bone pain and neuropathy, what my onc. finally prescribed for me that actually worked was MScontin (oral morphine) for longterm pain control and dilaudid for breakthrough pain. It worked wonders and then was a total b#((% to get off of, I dealt with withdrawal symptoms for months and months, but I did it - with roxanol (short acting liquid morphine), drop by drop. The weaning process was much more intense than any of us anticipated. I got chills, intestinal distress, hot flashes, etc. More than 5 days will create dependence as I understand it.

But whoever wrote that "toughing it out" with withdrawal is NOT the way to go was right. In fact, my understanding is that withdrawal can cause long term problems (I'm sorry, I don't remember the references.) And my docs finally understood that once I quoted various articles. If I'd had to get off the morphine fast I think we would have done a methadone inpatient treatment, but luckily the roxanol worked and I didn't have to do that. But it took the pharmacist and a bunch of research on my own to figure that out - my oncologist knew how to get me ON the painkiller but not off. I don't think withdrawal is their specialty. Finally the oncologist agreed to consult with the pharmacist, and that's when I got the help I needed.

Best wishes Monday morning, and wishing you lots of deep breaths until then. And the ER is always an option.

mntskies · January 2008

Hi, I just wanted to add to the previous comments. Bandgteacher, I hope you get the answers you are looking for. You have a full plate to battle MS and the s.e of AIs.

I have talked to my onc about this very topic (after seeing an orthopedist and having an MRI) and he said I could take a "vacation", 10 days, from Femara. Then I told him I wanted to switch to Aromasin. I also know Actonel plays a role in this; I have increased my Vitamin D3 to 4,000 a day because I have read it helps decrease joint pain. Once a month Boniva has been more painful for other women because it is such a big dose at a time. I have also added glucosomine with MSM; I can't tell if it helps, but I know it doesn't hurt. I know women who won't take AIs because of the side effects, but it has been shown to give a 25% advantage against reccurence.

I hope this gives you some encouragement. Best wishes to you. Please keep us posted.

Anonymous · January 2008

I'm still in a whole lot of pain.

I took matters into my own hands and went to my "old" docs in Peoria on Friday.

Funny thing-my right ovary is now a-ok, and the left one has a cyst. I actually wondered if it did, I was feeling that pain the previous night. I thought I was just imagining it. I still have pain in the right side, but doc says it is because I have so much scar tissue there and it is pulling. So, I have to go back in a few weeks for another sonogram.

My MS doctor is putting me back on Cymbalta. I was on it a while back, but it wasn't doing much for me at the time. Now, my doc thinks that I am showing signs of Fibromyalgia, and thinks this will help my pain issues. He is taking me off Lexapro and the massive doses of Nortriptyline.

Now, I am worried about how to face the docs here! Embarassed Undecided Frown Foot in mouth

I think I am going to ask Peoria doc to contact Chicago doc so they can "co-treat" me (or the other way around). Is that a reasonable thing? I am now kind of sheepish about having gone behind Chicago doc's back, but I WAS NOT GETTING ANY ANSWERS!!!!!!!!!

As for the gyno. issues, I am terrified of that doc, and have no idea how to handle that one. Do I call and say that I need to cancel my next appointment? Do I explain that I went elsewhere?

As for the rest of my pain, dh gave me one of his muscle relaxers today because my back was in such major pain, and I felt outstanding. What does that mean? Do I need to stop picking up my 40 pound toddler?

Hrmpfh.........

Love and prayers,Deb

iodine · January 2008

As far as the docs and knowing, I've always had a hard time getting them to actually Talk to each other.

I ask for and carry copies of their reports and office notes with me to another doc, or have copies sent. I prefer to send copies myself, I've seen too many reports fall thru cracks.

That way each doc knows what the other has done and if they ever DO talk to each other, they have an idea of what's happening.

If you don't want to go to the gyn, cancel the appt. No one can make you return.

If you get better treatment from one doc, stay with them.

If you need a new doc in any specialty, find one and have your records sent.

YOU employ these people---act like the boss!

Anonymous · January 2008

I GO TO THE PAIN CLINIC TOMORROW MORNING!!!! I'm writing that in caps because I am shouting with GLEE!!! Let's hope I can get some relief.

My new motto: Pain sucks

My old motto: Cancer sucks

Anonymous · January 2008

I agree with Dotti.

I am so happy you will be at the Pain Clinic in just a matter of hours! Let us know what they say, PLEASE.

I have heard fibromyalsia can accompany other diseases. It seems people with MS often get fibro. They are now using Lyrica for fibro.

My friend is being taken off her muscle relaxer that she's been taking for years and switching to Lyrica. I so hope it helps her. However, I do not think she's in much pain. She was getting a massage every week until her therapist recently moved....been doing this for years. I really thing the massage really helped her and so does she.

Good luck tomorrow, Deb.

Hugs

Shirley

TenderIsOurMight · January 2008

No one should feel sheepish for seeing new, old, or in between doctors when they are in unrelenting pain. The more input the better, as medicine is not an exact science and so much depends on where the doctors head is right at the moment of your visit.

Cymbalta sounds like a good alternative to Lexapro and huge does of Nortriptylene. Our bodies get use to meds over time (called tachyphylaxis), so switching them around from time to time may have more of an impact. Luckily with Lexapro to Cymbalta there's no weaning process as you're substituting a SRNI for and SSRI and shouldn't run into trouble with Serotonin syndrome. For the Nortriptylene, you may wish to either check how to withdrawal the med or reduce it gradually. It causes dry mouth, blurred vision, constipation, heart slowness, so those are all symptoms you may like getting rid of.

Deb, at least your still pushing. I fear for the patient(s) who get so frustrated with the system, they just give up...Hanna, your post is so true and well written: we do seem to be going backwards in pain medicine of late.

Here's hoping to a good day for you tomorrow, Deb.

Tender

Anonymous · January 2008

Ok, here is the game plan....

By the way, this was the BEST experience ever. The nurse looked like he was going to be a real grouch-he didn't smile or say hi when we got there (10 minutes late cuz we couldn't find it).

When we got called back, for some reason I told the nurse that Daniel has Hemiplegia CP, and the guy looks at me and says, "I know, I do to."

OMG!!!!!!!!!!!!!!!!!!!!!!!!!

This guy was AWESOME. He looked me straight in the eye, and said point blank, "You need to calm yourself down because your son needs YOU." He was SO good at reading what a neurotic mess I am. I wanted to talk to him about HIM, because he was just plain AWESOME, walked with a tiny limp, used both arms rather equally, and was a GENIUS. He was so busy, but said I can come talk to him another time.

Anyway, the doctor was awesome too. He was very thorough, and examined me and asked tons of questions. He said that he was going to first try me on Tramadol (which I got excited, because that was the medicine of dreams for me-took away the pain, no SE). However, I asked if it can be taken with Cymbalta, and he looked crestfallen, and said no. Ack!

He wants to give the Cymbalta at least 4 weeks.

He is putting me on a low dose of Baclofen (my Mom took that, too!), to see if that eases my issues.

If the Baclofen and Cymbalta do the trick, then we have a winner.

If not, then he is weaning me off Cymbalta, putting me on another anti-depressant, and putting me on Tramadol.

In the meantime, they want to be sure I get a spinal MRI asap, which I was supposed to get the day after my big car accident.

They, too, are stunned I have MS, and couldn't believe that I could do the things they asked me to do (the usual neuro exam stuff).

So weird. I SWORE to them I really do have it. They believe me, but can't believe it!!

I have hope for a pain-free future. I feel happier already!

Love and prayers, Deb

snowyday · January 2008

Deb, I'm so happy you finally found some real help. You were on my mind last night and I just kept answering other posts and even started one. But I'm happy you have help, let us know how it works out for you. You never should have had to go through any of that bs they put you through, I still feel horrified at what you went through.Pearl big hug!

Anonymous · January 2008

Deb, you have made my day! I believe you have found yourself A DOCTOR that's willing to really listen. You make me feel like <dancing> Laughing

Shirley

snowyday · January 2008

About constant pain, I have strong pain medications and even take advil on top of that but nothing is helping the joint pain. I was watching Jeopardy and the commercial for Activeon came on has anyone tried a topical pain reliever and did it help them. Going to change my avatar to despartly seeking pain relief.pearl49 And boy I'm crabby today because of it.

Anonymous · January 2008

Oh, my sister, I am "feeling your pain," and I offer my love and prayers for your own relief.

I was told to try topical pain relief, but how could I? My pain is everywhere, and I would have to cover myself with patches or dip myself into something.

Thanks again, you guys for being there. It's so hard when people can't see your issue/malady. It's like chemo brain. I sure look like I'm not a cancer survivor now, so I sure can't have chemo brain and cognitive issues, right? Grr.......

Lots of love to you all, and prayers always, Deb

djr · February 2008

Deb i have the same pain you have mostly my back. the doctors said the same thing to me as you. like i was making this pain up. i been taken percocets. i tried everything. i had my breasts removed and have implants.when i did taxol i had bad pain last november year later still in pain.i have massage therapy every monday for the pain approved by my cancer doctor and insurance. went to rheumtologist he said my bone are soft so i was given bone pills and an infusion to make my bones stronger. i take cal cum and castrate the pain is better but i still have to take pain pills. i goneto every doctor for help . it terrible sometimes i think i have bone cancer because of the pain. with out the pills my life is horrible i can't work and i'm not fun to be around when i have the pain . i want it to go away. when the weather cold forget about it i can't walk. o yeah, one doctor told me it the side effect of the aromision pill sorry my spelling bad

Anonymous · February 2008

Hmmmm......the baclofen isn't doing so very much. I feel a little more energy without all the nortriptyline in my system, and my mouth isn't so daggone dry now. My head is pounding all the time.

I told the doc yesterday that I'm not exactly dancing and singing the praises of this medicine cocktail yet, and I am instructed to wait till Monday. If still no improvement, he will do some tweaking.

Bleech......pain sucks.....

Anonymous · March 2008

Update on pain.....

It's getting better. They listened to me and took me off Baclofen (although the doctor insists he never would have taken me off it right away without weaning me, those were the orders I was given by both his nurses).

He came into the room for my second visit and looked at me blankly.

"I don't know what to do with you."

Ok....He went on to say that he didn't want to give me anything narcotic based (fine by me!), and all that leaves is the piddly stuff.

I said, "Didn't my bone scan say I had arthritis? Where exactly is that arthritis?" He muttered something about how arthritis shouldn't make a person this miserable, but pulled up the scan.

"Hmm...You have arthritis in your shoulders, knees, both hands, spine, hips, toes, it's everywhere!"

So, I ask if he can give me something to help that.

Unwillingly, he says, "We can give you celebrex. I don't know if that will do anything for you, though."

I take my celebrex the next day, and feel like a new woman. I did so much that day-I cleaned the house, I went wild with activity!

I still have to intersperse celebrex with some Tylenol, but now it is two doses of extra strength, vs. four doses.

Aaaahhhh......much better!

I asked my hubby if he will love me when I am all disfigured with arthritis, and he just looks at me and says, "I loved you without hair, I love you without breasts, don't you think you know the answer to that?"

What a man.

Anonymous · March 2008

Deb, do not over do! You don't want your arthritis getting worse. Rest in between chores.

I am happy that you are feeling so much better. Pain is hell!

Shirley

Anonymous · September 2008

Pain update again.......

I was having some funky SE's with Celebrex, and got taken off of it. I went back into the depths of pain hell.

I had just spent the entire day (literally) on the phone with my oncologist's assistant (who was a total hag to me, btw), and my neurologist's office. I even called my PCP. I cried to every single one of those people, "I AM IN PAIN!!!!" and nobody would help me.

I was in the drive-through of Walgreens Pharmacy, and the angels from heaven sent a ray of light to me in the form of a license plate on the car next to me. It said, "NOPAIN4U" or something like that. I rolled down the window and yelled to the lady in the car.

"Are you a pain doc?!"

Crazy look, then response, "No, but I am a nurse for a wonderful doctor....." she gave me the doc's name, and drove off. I called my hubby right away and had him google her.

After months of phone calls to the PCP that doesn't return calls, I got a referral to her.

She was amazing. She LISTENED to me, and said, "What you are describing to me is NOT arthritis pain. It is NOT chemo-related pain because it changes when you change position. It is NOT MS pain, either. You describe CLASSIC symptoms of disc problems in your back."

She had me get an MRI, and I am getting the results tomorrow.

I never thought I'd say this, but can everyone please PRAY that she calls me and says I have back problems?! She said if it is a disc problem, I'd get steroid shots, and my body will learn to heal itself eventually, and I would NEVER TAKE A PAIN MED AGAIN!!!!!!!!!!!!!!!!!!!!

I told her if she can get me to that point, I am bringing her cookies. Lots of them. She said she was very food-driven!

Of course, as with every test, I have the teensy worry that they will find some remaining cancer in my body, but I tuck that worry aside and pray for back problems!!!!

Make the pain go away!!!

Comments

Categories