Make the pain go away!!!

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Anonymous
Anonymous Member Posts: 1,376

My whole body hurts.  All the time.  I have been on vicodin pretty much since starting chemo in Nov. of 2005, and just as of yesterday am off it( the vicodin, I've been off chemo since May of 2006) completely.  I was taking the maximum dose all that time. 

My doctor (neuro-oncologist, to be exact), tells me to just "tough it out," but the way I look at it, I have "toughed it out" way too many times than I care to remember these past 2.5 years! 

I want to be comfortable, but I also don't want to be doped up on vicodin.  Is anyone else taking a pain reliever they could recommend?  Tramadol is not an option because I am on Lexapro and they interact with each other. 

Help.  I'm in misery. 

Love and prayers, Deb

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Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Deb, gee, I'm so sorry you are in so much pain.  Why does your doctor want you off of pain meds?

    I don't know what kind of pain you are in.  Have you thought about seeing a pain doctor at a pain clinic?  There may be a pain "pill" that's not a narcotic that can help you.  I think a doctor who specializes in pain would know more about this type of drug.

    I hope you get help.  I don't think that anyone should be in as much pain as you and think you should "tough it out."

    Shirley

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    I hear you, Deb. I'm on Arimidex and the last 4 months (out of 4.8 years) have been especially a bear!



    I've tried to analysis the reason for the pain:



    a. Arimidex



    b. Arimidex and Lipitor: turns out Lipitor inhibits Arimidex (NOT the aromatase enzyme) so the Arimidex may have been circulating and circulating, i.e., getting more than usual 1 mg dose per day



    c. Lipitor itself. SE's are very similar in profile to AI's



    d. Bisphosphonates. Musculoskeletal pain is side effect

    Per Saluki today see:

    http://www.fda.gov/medwatch/safety/2008/safety08.htm#Bisphosphonates

    Turns out these can cause significant bone pain



    e. Other



    Since this feels so flu like (deep achy, sore, no fever) and muscle-affecting in addition to bone pain, I've decided to go to a therapeutic dose of NSAID. I respond best to ibuprofen (everyone responds differently to these drugs) so this may be 600 to 800 mg per day, divided with food for 2 weeks and see response. My oncologist is aware.



    Just to make this more challenging, Jelly Donut posted an article on a well respected Swedish hormone specialist, who notes AI induced pain may be due to too little estrogen to stimulate a type of estrogen receptor called ER beta (different from the ER alpha we're all knowledgeable about). You can read about that here:



    http://community.breastcancer.org/topic/73/conversation/698057?page=1#idx_2

    Or, just look under the Research Thread: A Different Kind of Estrogen Article.



    Wishing you didn't hurt too,

    Tender



  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Tender, it appears that Deb is not on any HT.  She is not ER/PR+.  I'm not sure if the chemo threw her into "chemopause."  If she had Taxol perhaps she is having neuropathic pain.  If so, I'm wondering if Lyrica would work for her.

    Shirley

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Following my first Mast and Node Dissection, I had horrific pain for 8-9 months. I tried everything. Including the Fentanyl Patch that I had a horrible reaction to. But, for many months I took Vicadin and Gabapentin (together) 2 times a day. That helped, but after a while I got to a point where I needed 100% relief. I literally told my Onc. I would not go on with my life if I didn't get help. He sent me to a Pain Managment Specialist. He gave me three pain blocker injections. They took about 2 weeks to kick in, but it was worth it. He told me he does this for lots of patients with different types of pain. Alot of them being back and leg pain. Maybe this would work for you. Sorry...I hope you get some relief soon. There's nothing worse than chronic pain.

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    Oh, yes Shirley! You are so right. I flipped Lexapro for Letrozole. Not having the best brain day, and I thank you for your help. Lexapro doesn't cause MS problems...



    Thanks,

    Tender





  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    I told the doc I wanted to go to a pain clinic and he said, "The goal here is to get you off of as many meds as possible.  Let's give this a week and see how you are feeling then." 

    My answer now?  NO!!!! 

    I am in misery.  I hurt everywhere.  The vicodin helped thoroughly, but I knew I was addicted.  

    Ugh.  Keep the suggestions coming, ladies.  I am going to write them all down and present to my doctor.  


    Love and prayers, Deb

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Deb, how long did it take for you to come off Vicodin?  And of course you were addicted.  My sister-in-law took pain pills for years and finally decided to have her second back surgery.  She got off the pills and it was very hard for her.  Now she's okay.  But her pain was "fixed." 

    My dh goes to a pain specialist and they put a neuro stimulator up his spine.  He doesn't use it like he should.  He also takes Lyrica.  I don't know if it helps or not.  We'd only know if he went off of it.  The injections didn't help my husband.

    A friend of mine who has rheumatoid arthritis has another friend who went to the pain doc my dh goes to.  He's got her on something that's time released.  I have no idea what it is. However, she says it has helped her tremendously.  I don't know if it's a narcotic or not.  I'll ask her to call her friend.

    Many doctors are afraid to order pain meds because they don't want to be thrown in jail.  LOL  No, that's not funny.  But many are very much against prescribing them long term. 

    It's like my primary care doc....I used to get my Alprazalom (Xanax) from a shrink.  Actually an orthopedic doc gave it to me as a muscle relaxer.  I was extremely anxious at the time.  It worked..didn't cure my anxiety...but helped.  Then I had to start seeing a shrink..the shrink didn't help.  But the Alprazalom helped. LOL  I stopped seeing the shrink when I was dxd with bc in Dec. '04.  Then my primary doc started prescribing it.  I used to take (many years ago) 3-4 mgs a day.  I cut back to .5 mg 3 x a day.  Then I cut back to .5 mg once a day.  When bc hit my primary let me go up to .5 2 x a day.  My last visit he again asked if I needed them.  I said yes.  He said he'd rather treat my anxiety with raising my Effexor.  I said to him..do you know how long I've been on Alprazalom and went on to tell him how much I used to take and what I'm taking now (which he knows..he prescribes them).  His answer was that he knew I had been on them a long time.  My response was 20 plus years.  He shut up. LOL

    I don't choose to take this pill or any other pill.  I wish like hell I never had to put a pill in my mouth.  I'm not an addict, but I can't live like I did before taking this particular pill.  I was able to get off Prozac before bc dx, but I'm now on a low dose of Effexor.  I also take Amitriptyline at night for sleep which is also an anti-depressant (first prescribed by a rheumatologist for fibromyalsia...suppose to help with pain).  I've taken that almost as long as Alprazalom.

    I so empathize with you.  I realize that pain meds as well as anti-anxiety drugs can become less effective therefore, needing more.  Yep, there's time I'd like to take more.  Unless I'm really in a pickle I do not up my dose for that day.  It's rare when I do.

    I still think a pain specialist would be a good doc to see.  Ask your doctor if he would like to live in pain DAILY!

    Shirley

  • bluedahlia
    bluedahlia Member Posts: 6,944
    edited January 2008

    Shirley, Effexor and amatriptyline contradict.  I just recently started Effexor and I needed to be weaned off the amatriptyline before I could start the Effexor.  Please be careful.

  • snowyday
    snowyday Member Posts: 1,478
    edited January 2008

    Didn't your Dr. wean you off of the vicodin if he didn't your probably going through withdrawals as well as the pain. Get another Doc and like the ladies said a pain specialist.  If he didn't wean you that was just plain cruel. Pearl

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Yes, bluedahlia, there CAN be a problem with both antidepressants taken together.  However, I've not had any.  I took Prozac for years while on Amitriptyline and had no problems.

    Thanks for your concern.  However, I would love to get off Amitriptyline to see if I could lose weight a bit easier. LOL  However, it does help me sleep.

    Shirley

  • bluedahlia
    bluedahlia Member Posts: 6,944
    edited January 2008

    No problem.  I did have withdrawal symptoms getting off the amitriptyline that took 3 weeks to go away.  No fun at all, but am ok now.  The Effexor seems to be helping my Parkinson's symptoms as well, so that's a plus.

    Be well.

  • AlaskaDeb
    AlaskaDeb Member Posts: 2,601
    edited January 2008

    Deb-

    NO ONE should go off a narc drug they have been on long term cold turkey.  If you just stopped the drug without tapering off you can have quite a few bad side effects as well as dealing with out of control pain.  If you didn't taper off over the course of a few weeks, I would call you doc and discuss this.

    Pain sucks.  I have a lot of pain, but lucky for me it is all low enough of a level I can function without needing narc drugs at the moment.  I just hate how they make me feel....I want too sleep all the time...

    Have you tried a TENs unit or accupuncture?  Both things have helped me with pain in the past.

    No one should have too "tough it out"  That is just a load of crap!  You should get the pain relief you need. 

    I am sending you a gentle hug....I hope your doc gets things worked out for you....

    Deb C

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Bluedahlia, that must have been awful..the withdrawals.  I bet I'd have'em bad.  Scary.

    I'm sorry to hear you have Parkinson's on top of this dreaded disease.  There's so many diseases for which we need a cure!

    Shirley

  • bluedahlia
    bluedahlia Member Posts: 6,944
    edited January 2008

    Thank you Shirley. 

    Smile

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008
    You're welcome, "Blue." Wink
  • iodine
    iodine Member Posts: 4,289
    edited January 2008

    This is absurd!  I would think he'd jump at the chance to send you to a pain clinic.  the objective is not basically to get you off meds, it' to find the cause and treat it!  Screw him.

    Pain clinic docs have  a great deal more education in this field and should be consulted.

    I have known local docs who didn't like pain clinics because the clinic would consult, write huge dose orders and then turn it back over the the initail doc to prescribe.  Now we all know that local docs are watched like hawks by the state boards and their records reviewed and they come down on them for "over prescribing" with fines and threats of loss of license.  so, I don't blame them for that.

    My pcp won't write for xanax, i get the scrip from my onc.  No one questions his orders for large amounts of ANY med.

    I have a good friend who's tried everything including surgery and just recently was put on Neurontin with huge great results in less than 48 hours with pain relief.

    Ck out that pain clinic sooner rather than later.

    Hugs.

  • NoH8
    NoH8 Member Posts: 2,726
    edited January 2008

    Deb, I can relate to the pain though not for the same reason. I have fibromyalgia and a pain free day is rare for me. It's really hard sometimes. Are you getting enough sleep? I know for me when I get an extra nap or sleep longer at night the pain seems much more manageable.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    I'm waiting for one of the doctors to call me back-I've left them all several messages today (and last night). 

    Oh, ACK! 

    Love and prayers, Deb

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited January 2008

    I agree with some of teh others that it is going to be hard for you to isolate the pain caused by rebounding off the vicodin and what pain would exist otherwise. Because you will feel pain withdrawing from teh vicodin. I think the suggestion of a pain specialist is the best idea.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Deb...I'm sorry you're having this struggle, but it seems the ladies here (of course!) have some good ideas. It does strike me as very odd that your doctor would cold-turkey you off of such a drug. Never mind the pain....what about the serious adverse events that occur from sudden withdrawal? That could be considered malpractice, but I certainly don't wish you a severe reaction to prove it! He should be giving you a milder drug, in a milder dosage, in the same drug family, to wean you off of the Vicodin.

    Hang in there, Deb, and try not to take "no" for an answer!

    ~Marin

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    He may have weaned her off.  However, my sister-in-law was weaned off and it was horrible for her.  She still had some withdrawals.  Everyone's different.  Some people take longer to be weaned off a drug.

    Sleep is good for fibromyalsia.  It's not always the same for other kinds of pain.  That's why I was put on Amitriptyline years ago, but on a higher dose.  They want us to sleep deep...Delta.

    Pain can cause anxiety and therefore, depression.  I know....been there, done that.

    Deb, I hope you find an answer soon.  I know this is so very difficult for you.

    Shirley

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Deb -

    The beauty of pain blocking injections, is that it eliminates the need of taking daily pain meds. Pain Specialists are just that...specialists. Best wishes to you!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Oh phooey, I wasn't clear-

    I did get weaned off the vicodin a bit.  I was taking 8 (yes, 8) a day, and I was told to halve that for a week, then go to two a day, then suddenly, none.  So, it took about 10 days.  I really felt like if I had about a week more, I would be ok and not climbing the walls. 

    I just want to gnaw off my appendages right now. 

    I have 800 mg. Ibuprofen that my onc. prescribed, but it doesn't help a stinkin' bit. 

    I switched to regular Tylenol yesterday and felt better for about 45 minutes each dose, then felt crappy again. 

    I practically stalked the neuro-onc all day yesterday, and finally had a long conversation with him on the phone. 

    He finally agreed to seek out other venues rather than torture me. 

    I am supposed to wait for him to call me back today to see what the other doctors on my "team" decided was best for me. 

    I totally know I have been addicted to this crap since the first month I was on it.  I tried to get off it the first month, but every time I did, I'd feel lousy, call my then onc. and tell him.  What did he do? 

    Gave me more. 

    That is so wrong!  I don't want to be in pain, but hasn't my body taken enough of a beating that I shouldn't be adding more chemicals to it? 

    Thank you all so much for being my support network.  I truly love each of you and thank our dear Lord for bringing us all together. 

    Love and prayers, Deb

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Well, the doctors at U of Chicago have all spoken, and they say that my misery is only due to vicodin withdrawal. 

    I'm to "tough it out" until next Wednesday. 

    I'm being sneaky (at least it feels that way), and going to see my old Neurologist in Peoria, because I want to see what he has to say. 

    He isn't an MS specialist like the U of C guy, but he's been my doctor, and keeping me comfortable for a few years.  I trust him. 

    I did call my gyn. and asked him for something for the ovarian cyst issue I'm having (which is often the cause of some of my pain).  He wanted to give me vicodin before, I refused it, and he gave me Darvocet.  I hate that stuff-it makes me feel lousy.   I'm not taking it. 

    An MS nurse specialist came to my house last night, and I told him my issues, and he STRONGLY urged me to follow through on the speculated fibromyalgia.  My oncologist in Peoria started to look into it, but then we moved. 

     He said that women who have had MS for a number of years often tend to struggle with fibro pain, and it remains undiagnosed because it is chalked up to MS pain. 

    So, I have this miserable whole body pain that began with chemo and Neulasta (oh, the horrors of that stuff.....shudder.....).  Then I have MS pain (possible neuropathy), and possible fibromyalgia?!?!?!?  How on earth can a doctor determine what the cause is?!?!?!?!?!?!?!?! 

    They still don't want to send me to the pain clinic.  I'm tempted to just go on my own........

    My head hurts.  

    Love and prayers, Deb 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Deb, my point of view.....they weaned you off of the Vicoden too quickly.  Two years is a long time.  And as far as the onc giving you more I think he thought he was doing the right thing since you had cancer.  The person who did my bp and weight always asked if I was in pain.  I believe they want to keep us as pain free as possible.

    MS is a big problem in it's self.  I don't really know about the pain from MS, but I hear it can be bad.  I read Montel's book, "Climbing Higher," after I was dxd with bc.  I needed some inspiration  Wink  (also read Lance Armstrong's book).  From what I've read about MS some people with fibro also have MS.  The two diseases can mimic each other. 

    I hope you find the help you need.  I do think you are having withdrawals, but I still think (I'm no doctor) that they took you off too quickly.

    Shirley 

  • chemo072
    chemo072 Member Posts: 682
    edited January 2008

    The fibro dx would probably be worth it - then you'd get treated for pain right away.  It was actually very helpful to me to get the fibro dx, because then I actually got help.  A pain mgmt program with a pain mgmt clinic and a pain mgmt social worker and nurse who'd actually help!

    I know what they'd say:

    a) adequate medication - if the pain is spiraling up and up it turns the volume dial up, and then what would be a little bit of pain hurts way out of proportion - the goal is to catch the pain before it gets out the barn door and keep that volume DOWN

    b) diet - no sugar, lots of water, lots of protein

    c) deep breaths, hypnotherapy, meditation, positive visualization tapes'

    d) walk 

    e) anti-anxiety meds if they'll help

    for MS, low fat, no red meat right? 

    Hope you get the help you need and feel better soon!

    Pain is supposed to be a new vital sign, and not ignored.  Sheesh. 

  • lewisfamily503
    lewisfamily503 Member Posts: 621
    edited January 2008

    Deb, I am so sorry that you are having such a tough time. When I read about someone as young as you, my heart just aches. It is SO not fair! I am a music teacher too! K-5 music in public schools. I so love to teach and right now I am really missing the kids. Music takes my mind off of everything and I bet that's the same for you. I sure hope the pain gets better for you. Chemo must be really hard. I don't have to do that part and I feel really lucky. Your avatar of your son is so cute--what an angel. I read you biography and I have to say you have been through it, girl!!! It sounds like your church has been so great for you and many people love you. Take care and god bless,



    Anne

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Thanks for all the thoughts on fibromyalgia.  I was at U of C today to get my MRI records to show my neurologist, and saw the sign for the pain clinic.  I started to march over there, and stopped about halfway there. 

    I just feel like I am not allowed to seek out relief from the U of C docs, and need to seek it out elsewhere. 

    I was granted a total of 10 Tylenol with Codeine yesterday.  I don't see the doc for my ovary till the 23rd.  10 pain meds are supposed to help me that long?!?!?!  

    Anne, I had a hard time teaching the little ones.  I LOVED teaching HS band.  It was my life.  I was the teacher that was at school hours after the final bell rang.  My kids were always in my room whenever they could be (like study hall, before and after school, during lunch), and I loved it.  I wanted my class to be the place they felt comfortable in.  They always wanted to help me, as though it was in gratitude for letting them come to my room. 

    Thank you all, ladies, I don't know what I'd do without you. 

    Love and prayers, Deb

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2008

    Deb...Have you used Lyrica? My good friend who has MS used to take it and found it effective for pain associated with spasms. I've also seen it being advertised lately for use in Fibromyalgia.

    ~Marin

  • Hanna60978
    Hanna60978 Member Posts: 815
    edited January 2008

    Reducing the amount of pain control medication a patient takes is not something a patient should be required to "tough out" under any circumstances.  This "physician" sounds like a sadist as well as an uninformed, cruel, insensitive moron who is neglecting his reading of the current medical literature regarding pain medications and anxiolytics taken for cancer and it's treatment se's (both immediate and long term) and the necessity for individualized dose reduction programs.

    Vicodin is not the strongest opioid available.  Vicodin is hydrocodone.  Percocet or oxycodone is stronger and often better tolerated at a lower dose.  Darvacet is the poorest performer, strong NSAIDS are better.

    If it is indeed necessary to withdraw from Vicodin, the reduction process should be taken very slowly or you risk an increase in pain and the increase in pain will increase anxiety which will increase pain perception.  Cancer pain, cancer treatment pain, and cancer related anxiety are all extremely real and must be removed.  Is this sadistic doctor under scrutiny for over-prescribing narcotics?   Or, in his opinion is it only right to allow a patient dealing with cancer relief from pain when it is terminal?  As in a couple of weeks left?  I think not! 

    If in fact, you really need to go off medications, there are distinct regimens to assist in the withdrawal - none of which involve a sudden toughing it out. 

    Pain/anxiolytic medication reduction should involve a mixture of medications aimed at a long term goal.  It's not a 'by next week' process if it's to work.  Simply thinking that goal must be reached immediately can throw a patient into a panic that increases anxiety and pain. 

    First, xanax is not the best anxiolytic available.  It is an immediate acting however short acting drug.  In quickly, out quickly unless it's prescribed in an extended release form.  It has a tendency to cause the central nervous system to react inappropriately when taken over long periods of time.  The quick in and quick out nature of xanax causes the one who takes it to need it more frequently as tolerance builds up.  When tolerance has built up, the need shortens from .25 every four hours to .25 every 2 hours.  Then the patient feels anxiety symptoms (which unknown to the patient can actually be withdrawal symptoms due to the central nervous system's missing the drug).   Xanax has a short half life.  A drug with a longer half life should be taken alongside a slowly reduced dose of xanax until the xanax can be discontinued. 

    The same is true for hydrocodone.  Another drug with a longer half life should be administered concommitantly with gradually reduced amounts of hydrocodone until the hydrocodone can be safely discontinued.  At no time should the patient be made to feel uncomfortable withdrawal symptoms.  Over time, the drug with the longer half life can be gradually reduced until it is not missed by the patient.

    It is true that the pain or anxiety symptoms  that led to the prescription of a narcotic or anxiolytic can mimic the symptoms of its removal from the body. 

    A relaxed medication management protocol designed by an expert in pain management where the doctor is not "on trial" for over-prescription of controlled substances, enables reduction in medication dosage and can be handled in a far more humane fashion than that ordered by the sadistic excuse for a physician above.

    That physician should spend a day with neuropathy before detemining the "right?" way to reduce pain medication. 

    Another thing, I thought with the moving forward of civilization, we would not be thrown back in the dark ages of medicine.  It seems as though the disapproval of pain assistance medications has only gained medical popularity in the past...what...30 years or so?  Maybe less?  Why?  Why do patients have to suffer more pain now with physicians in fear of losing their prescription licensure of controlled substances?  Our great grandparents had no trouble acquiring narcotic medications when necessary a hundred years ago. Why should women of any age or anyone of any gender suffer the pain of cancer or cancer treatment with the threat of their pain relief taken from them prematurely or abruptly hanging over their heads?

    As you can see, this subject gets me riled up.  I hate like anything to see anyone in pain and just want to help fix it. When I hear of a cancer patient whose doctor "doesn't want them to get addicted" I think what in the heck are you thinking??  The person has cancer pain and getting addicted is the least of their worries at the moment! I get disgusted with obstinate, supercilious physicians who withhold medications from those who need them.  And that's my two cents. I'll tell you all one thing, I will never allow a loved one of mine to suffer in pain as long as I'm around to help.

    To you Deb, I suggest you go call the pain clinic and tell them of your trials with the other doctor.  Tell them if you need to reduce your meds, will they help you do it in a humane way that won't cause you more pain and stress.  Tell them there is no way you will make it to the 23rd on 10 tylenol with codeine and keep going up the chain of command until you reach someone who will help you. If you don't get anywhere, go to the ER and tell them you've been a cancer patient on pain meds and they've suddenly been withdrawn and you need help. My guess is you need a combination of anti-anxiety muscle relaxants, and pain meds all with long half lives and a real slow reduction plan. Good luck.   

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