| Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | I've been on some kind of pain killer since last December with my 1st tonsillectomy. I went off briefly and right back on after my 2nd surgery in February and then third surgery less than two weeks later. I started treatment and have been on them since. Oxycododone, Oxycontin, Hydrocodone and most recently Lyrica and Tramadol. I've weaned myself down in dosage and frequency but still have been taking them daily. The Lyrica is twice daily for the nerve pain. I still hurt the vast majority of the time. Mostly it's a general body ache as if I have the flu or I'm 80 years old. My body just hurts!
Yesterday I only took two 5mg Oxys, one in the morning and one in the evening after work. Well today I decided no matter how bad I was hurting, I wouldn't take any. What a mistake! I was absolutely miserable. OTC pain relievers didn't do a thing. It didn't help that the neuropathy I had a few weeks ago returned and has affected me from the waist down to my knees and lymphedema has my face feeling like a balloon. I finally fell asleep last night a little after 11pm and awoke an hour later with a start like I was jolted out of bed. The sheets were soaked and my legs are restless and I feel twitchy for lack of a better word. Upon consulting Dr. Google (I know I know), these are symptoms of narc withdrawl. I have a few others like anxiety, irritability and hot (sweating)and cold flashes.
So here I sit unable to sleep. My shins feel like they want to explode and I just can't get comfortable. I took one 5mg oxy a few minutes ago and hope it quiets me down. This sucks! You think the docs would have warned me about this. I don't get a high off of these things. They just take the pain away but yet I feel like an addict and I suppose I am to some degree. A call/email is in order to my team about this. I'm seeing my RO and MO the 1st week in August and will discuss it further then. I want to feel normal without these things. Not to mention the diet of stool softeners and M.o.M. so I don't explode from constipation!
~Sigh~
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | I would cut down to one pill daily before dropping the lot - then maybe half. Someone else better versed in this situation can help. Good luck.
Last edited by Cheryld; 07-21-2013 04:12 AM.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Maybe you will be referred to a pain management specialist, some places for cancer are in palliative care. As Cheryl said, it's a slow withdrawal, and would be careful with others conditions that may be impacted from fast withdrawal. Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I think most strong pain medications need to be slowly eliminated from a patients routine. That is if they are not in pain any longer. That means to very gradually withdraw and cut back on medications over a span of a few weeks. This can be dangerous to all of a sudden stop taking without medical advice. Im glad to hear you will be running all of this by your doctors.
If this helps, Ive been told by a couple of my doctors a patient who is truly in pain and takes medication to alleviate the pain is not a drug addict. Your docs may suggest pain management specialists to help if you have trouble managing the pain without medication. Im not exactly sure what these types of specialists will do to help but some members ahve used them successfully.
Best wishes!
PS.... Compazine can cause restless leg syndrome. It happened to me and made me pace the floor even when too exhausted to walk. It was awful! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | T- I wouldn't let my husband drive on narcotics, so he went off them 'cold turkey' regardless of the fact that his instructions stated that he should speak to the doctor before reducing the dose. I left him alone and slept on the couch. So, you are not the only one.
Pain management has a lot of facets, and I think that seeing a specialist has its merits. My guess is that you really need some of your meds - but as to which - and at what strength - is for a doctor to work out with you. One of my friends - who is a pain management specialist - told me that it frequently takes a while to get the dosages and kinds of pain meds right. She is a good 'listener' - an important quality in any doctor, and one that you really want to search for as a pain management specialist. Best wishes - and hope you did get some sleep. I find that white noise of some sort helps me.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | One other thing to get checked out...your TSH. You may also have a bad Thyroid.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Thanks for the replies. After reading a bit more it was rather unwise to try to go cold turkey like that. Our reaction to withdrawal from narcs is no different than what a heroin addict experiences. I've taken a couple of doses of 5mg oxy today and feel much better. The reality is that I'll probably be on some kind of narc for a while longer and will have to seek some help from a pain management specialist to wean myself off totally when the time comes.
I finally got some sleep and I'll get to bed early tonight. Tomorrow starts another work week.
David, thanks for the tip about the thyroid. I have blood work coming up and I can ask that the TSH panel be included.
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | hi "T"
The most narcs I was on was 180mg of morphine along with hydro for break through pain. Nobody advised how to get off but I let my body tell me. I would cut MS to 120mg and stayed there if the pain was not present. Then several days later, I went to 60 and stayed there until no pain. Then finally went off daily but used them if I had pain come back for a day or two.
Having another chronic disease that requires daily meds I know my body all too well when I have let a day or two pass. So, that helped me more instinctively be in tune with symptoms associated with drug dosage changes.
If you have pain, you can't get off the narcs and try to tough it out on OTC stuff. Your body is telling you it needs more time to heal and needs the extra support of pain meds.
Once you get the I GOT CANCER badge, life is not the same. I believe we are permanently in a different class with respect to average consumer treatments ala OTC things. At least that is how I view it. At every turn in my journey there was always some prescription option that is far more effective than the OTC counterpart. In that regard, I guess I am spoiled and know better to get the "good" stuff right away and not mess with the kids tabs.
best, don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | [quote=donfoo]Once you get the I GOT CANCER badge, life is not the same. I believe we are permanently in a different class[/quote]
No doubt about it Foo!
Doing better the last couple of days. Trying to use as little as possible. Still using 2-3 5mg oxycodone a day. They keep the edge off. Mostly it's the body ache that gets to me. I feel like I've been run over by a truck and it's been that way for 4 months now.
Oh well... such is life with the I GOT CANCER badge...
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Apr 2013 Posts: 21 Member | Member Joined: Apr 2013 Posts: 21 | "T" I can relate! I am a little over 6 weeks out and have tried to start weening of the meds. I have 2 25 fentanyl patches with 2mg hydromorphone every 8 hours. I have started going to 10 hours and if this works for a few days I will go to 12 hours. Last week when I tried to go past 12 hours it hammered me hard so as much as I want off these meds I guess I will have to go slow.
T1 N2b M0 IVa HPV+ right tonsil 58 non smoker Noticed enlarged lymph node right side 2-2013 CT scan 2-18-2013, FNA 2-21-2013 Neg, Excised 1 node and bio tonsil SCC 3-19-2013. MD Anderson 4-1-2013 8 teeth removed 4-12-2013 Start treat 4-29-2013 66 GY IMRT Comp treat 6-7-2013 8-15-2013 NED | | |
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