Constant pain for years - how do you deal?

Have you asked to try a non-steroidal anti-inflammatory as an alternative pain control? My PCP has me taking one (Mobic) every second day, two weeks on and one week off. It has solved my pain problem for now :-)



Jenn

I have PMPS and LE. I have been living in constant pain since 1/11/11. Granted it is a tad better since then, but not by much. When the LE flares up, the nerve endings who think they are always feeling pain, contribute to even more pain.

These are the meds I have been on since 2011:

• Amitriptyline 25 mg Tablet: 1 Tablet by mouth once daily at bedtime

        Amitriptyline is an anti-depressent that my pain specialist told me has been shown to be effective with some                         people and pain, it also helps patients who have problems sleeping because of pain

• Gabapentin 600 mg Tablet:  1 Tablet by mouth 3 times daily and  ½  at  hs This medication is for the nerve damage from the node removal and from the BMX on the chest area
• Hydrocodone-Acetaminophen 5-325mg Tablet:  1 Tablet by mouth every 4-6 hours for pain as  needed-----I only take this when things are really bad, like when I am having a really bad LE flare up

• Metaxalone (Skelaxin) 800 mg Tablet : ½ Tablet by mouth (400 mg) up to 3 times/day

  (I only take  ½  Metaxalone at bedtime) This is muscle relaxer. Every once in a great while I will take 2 halves/day

• Tramadol 50 mg:  1 Tablet by mouth every 4-6 hours as needed for pain. I was told by my breast surgeon that Tramadol was invented as a non-addictive subsitute for Vicodin. Sometimes it just doesn't cut it, hence the use of low does Vicodin

Back in 2011 when I first began at the Pain Clinic, they tried Stillete Ganglion Blocks to the nerve in my neck. They were extremely painful, not to mention dangerous if they hit and artery and the  medicine went straight to the brain,and only provided me about 2-3 weeks of relief.

When it was decided that the pain of the shot outweighed the benefits, they switched me to getting a bag of Lidocaine through an IV (like straight up Lidocaine to the vein) infusion. Those have been much more beneficial. At first I needed them about every 6-8 weeks. Now I need them about every 2.5-3 months. The three months is really stretching it.

In 2011, I got a wonderful referrall to a fantastic Pain Psychologist. He was super. He helped me learn that most people with chronic pain have a cycle. When we feel good, we overdo it. Then we are laid up in pain from overdoing it and do very little. Then we feel better and start the cycle again. The trick is to learn how to schedule your activities the best you can NOT to overdo it. Like I know that I can't clean the bathroom,do laundry, cook, sweep, and do dishes on the same day. He gave me a whole bunch of handouts. Basically he helped me learn how to live better with the pain, which really helps. It takes A LOT of work of accepting exactly how much I can do and how I have to live now.

I can't remember the name of the awesome book he gave me handouts out of, but I will ask when I see him again.

Now, I am already disabled, I don't have kids, just my dog, cat, and two birds and a wonderful significant other that I live with that is more than willing to help me whenever he can, understands I have limitations, and loves me more than I know.

I know many of you out there have jobs, kids, etc etc, so it may be harder for you. I used to be a single parent, first working full time in a very physical factory job with sucky hours, then as a nursing assistant and trying to go to school full time and parenting as well. 

Now, seeing that I have to get foot IVs (no needles or bps in the arms or hands), AND I am very difficult to start IVs in which my pain doctor finds extremely irritating and worries about blood clots forming, he is pushing me to try a trial of 3-4 days of a Spinal Cord Stimulator made by Medtronics. It is a very extremely expensive procedure (so if Medicare doesn't pay for it, I can't get it, which I don't really want anyway. I have had enough surgeries and worry about inserting a wire in the spine).

Basically what it is is a wire put up the spine where it sends out tingles to the damage nerves (mine are very easy to figure out where in the spine to connect to the nerve endings). It comes with a remote control that I keep on me (it had better come with one of those pagers like phones have when you lose them for me) and turn on and off, and control the tingles. I have heard of a few people that have had them and it works great for them, but unfortuneately they have different issues than what I have had. I had put out shout outs to anyone that has had them on here and at csn.cancer.org's breast cancer forum but never heard a peep.

If after the trial, the patient decides they want it, a permanent one is put in place. That is all I know for now.

I do have to get a referral to a psychologist (which is why I have to go back to the Pain Psychologist I saw before) to be examined and see if I pass the psychologist testing to see if I can handle. Given that I am so sick of surgeries, that I am so sick of being poked and proded and that I don't trust that I won't be the one to have the problems with it, I wonder if I will pass.

Does the pain make me so crazy I think I will go insane sometimes? HECK  YES!!! Do I get so ticked off at cancer that I have this extra crap sometimes? HECK YES!!!! (And I know that no one gets out of cancer with some kind of physical and emotional extras. We all do in one way or another)

As far as what you are going through Minxie, I am so so sorry. It would help if you described exactly what your pain feels like...stinging, throbbing, sharp, dull, tingling, burning,swelling like a water balloon being squeezed, etc. and exactly where you feel it. Those are the keys when getting help for pain, but that is just my opinion based on my experiences.

I know there is pain associated sometimes with reconstruction (I didn't get it so I don't know much about it), I know there is nerve damage pain that can happen, I know that there can be scar tissue adhesions that can cause tightness and pain, I know there is lymphedema that can cause pain, and I know that some get something called webbing and cording, and frozen shoulder.

I am not a doctor or health professional, so I don't know everything that could be causing your pain, but if I were I would take that list and start asking questions..Could it be one of these things causing my troubles? Rule them out one by one. 

Do your pain doctors KNOW what is causing your pain? I think it is easier to treat pain if  you know what is causing it. But sometimes we just don't get the answers. Make  your pain doctors do some work for you. Sounds like they aren't in your corner, but I don't know you, and I don't know the doctors.All I know is from the words you write, but you aren't singing your pain doc's praises, that is for sure.

I hope you do some investigating. If you are getting PT/OT but they don't know exactly what is causing the pain, they could be making it worse or not helping at all. Again, I am not a medical professional, but just trying to use some common sense here.

It sounds like your pain doctors are really doing their best to help you, so like me, you have to go out and be your own advocate. Push for answers, don't let them say poo-poo when you bring up a list of things you want to rule out. I would go to your primary doctor first, or you oncologist, or your breast surgeon. I have seen a lot of women in the past 2 years complain that their Plastic Surgeon doesn't take their pain seriously and brushes them off. That is not to say that ALL plastic surgeons are like that.

I hope I have helped you in some way. There are lots of different medications to treat pain besides Oxy. But I think knowing exactly what is causing the pain would help.My pain doctors (and I have seen three now, two job shared with me but left our clinic and they were very very good) told me that they never now how patients are going to respond to different treatments, and that even for them, it was a lot of trial and error to find out what works for each patient.  But told me not to worry, that if x didn't work, then they would try y.

You kind of sound like I did back in the very beginning before I had my team in place. It has taken me since 1/11/11 to get to where I am. And the most discouraging thing, is not feeling like my doctors' were taking the lead and willing to find out what was wrong with me and how to fix it. I think having a team of doctors that YOU KNOW are doing their best helps my attitude in dealing with pain. It is like I give up some of the negativity,down in the dumps, am I going crazy, will this ever end, emotions and thoughts.

Like I said, I still have my days where it gets to be too much, but it is nothing like the lost feeling I had in the beginning. Sometimes it takes a lot of strength, determination, and pushing forward for the answers to come. But once you start, things fall into place, not always at once, but over time.

I sure hope I have helped you in some way. I know where you are at. We are not the same circumstances nor health history, but we both are enduring a lot of pain.

Keep us in touch and keep letting it out on here. See if their is a Pain Psychologist in the clinic or in your area, if you find a good one like I did, he will go to any lengths to help you in your journey.

minxie...firstly i am so sorry you are in so much discomfort..i also had L/D surgery in Oct 09 to L side, like you i am in pain most of the time, if i get cold stressed or carry anything it is so painfull.  I find a hot shower helps a little, letting the hot water beat onto back. I do take painkillers most days.  I remember before having this surgery, i had this gut feeling i should not have this surgery, but everyone said it was the best way forward, my surgeon made it all sound so good, at that time i was just trusting in him. Wish i had gone with my GUT... Karen x

I've been taking Mobic (Meloxicam) 15 mg for years.  I have osteoarthritis in my knees and it takes care of the pain.  The beauty is that it's on WalMart's and CVS's cheap prescription list.  $10 for a 3 month supply at WalMart, $11.99 at CVS.  It really works.

Hi there,

I've been off the boards for about a year, getting my life back together.  I have been in constant pain since my dx, and after 6 drs, probably 20 different meds, and every sort of treatment and remedy available, I have a Butrans patch.  It delivers a steady 5mg of hydrocodone.  I have no problem working with it on, altho working is still a big challenge...6 hours would be good...8 wipes me out...no alternatives tho.  Anyway, my pain doctor said I can take an extra 1/2 pill at night or whenever I have a breakthru.  I have burning low back sciatic like pain (yes, tried it), and any ribcage movement irritates my hips.  (yes, had the shots)  But the worst is the foot and leg NEUROPATHY from the chemo. Ridiculous pain that never ever ever stops.  I just wanted to post in case anyone else is suffering.  It was dx as RLS at first.  Anyway, I have had about 80% improvement.  I am hoping to get my life back soon  Hugs to fellow sufferers!

Sometimes, it can take years for the pain to subside. There are several anti-depressants that work too....

I am surprised I have not seen any discussion  of Actiq on these pages. It is a form of fentanyl.

I have not used it myself, but have experience with a chronic pain patient, from cancer, who was prescribed Actiq for breakthrough pain only.

It is a dangerous drug, and should only be used in the most dire of chronic pain situations, where breakthrough pain is unbearable and the patient is tolerant to strong opioids, such as oxy.

Has anyone here been prescribed, tried or have commenta about Actiq?

I am so sorry for all that each of you is enduring.  I am 11 months PFC; I tried and gave up Tami twice, and Aromasin once, all because of the excrutiating pain I thought was from the meds.  I am now three months out from my last dose of Tami - and the pain is still there.  My hands are swollen and painful to move; my lower arms and elbows are so stiff I can't straighten them out without horrific pain.  I spent a month in PT for my (surgical side) shoulder which helped with range of motion but much of the pain is still there.  Hips are killing me.  The pain in my feet which makes walking almost impossible.  Surprisingly, though - I can still run (the pain is worst after periods of inactivity; once I get moving it seems to dissipate and even allows me to run about 2.5 - 3 miles at a time).

Worst of all - it all seems to come together at night, as I'm trying to sleep, and even with the help of Ambien I cannot sleep without waking frequently because of the pain.  If I was a betting woman I'd say it's actually getting worse, not better.

I was never warned about the long-term pain effects of chemo.  While I haven't read back on all of the posts in this thread, I'm wondering if it's worth asking my MO for a referral to a pain specialist?

I just never expected it to be like this...

Jg10:  Thanks for the insight.  "Pain" is kinda like breast cancer; it's not just one cause or disease, it's different for everyone!

I had never had a lick of pain before diagnosis; in fact I often joke that the last day I felt good was the day of dx, and it's been downhill (pain-wise) from there.  I've had my thyroid checked and been told it's functioning "perfectly."  Complained to my MO last year about the pain so he did a bone scan - no sign of arthritis.  I think perhaps the funniest thing about all of this is that it only hurts when I *stop* moving.  As long as I'm moving (running, gardening, walking, yoga, etc.) I feel pretty darned good.  That's what confuses me so; most pain problems like arthritis tend to hurt when doing things, not to get better.  So...I'll mention this to my MO and ask his opinion, and perhaps he can order more testing for other problems.  Thank you so much for your ideas!

Thanks again for this information.  I'm going to stop at my PCP's office tomorrow morning and pick up the latest test results so I have the numbers (I'm getting really good at reading medical reports!)  I do see my MO next Monday and will talk with him about this - I feel at least like they'll listen to and respect me a little better than my PCP who isn't focused on my cancer at all.