Why won't Doctor address my Pain issues

AJKearney

It has been 2 years cancer free and for some reason My doctors seem reluctant to provide me with pain meds or even address my joint and muscle pain.  Can anyone give me any advice on this subject.  How does one obtain the proper pain meds without coming off as a drug seeking freak?  Has anyone experienced thi type of behavior.

cinnamonsmile

I don't know what kind of

I don't know what kind of pain you have, when you have it, what it feels like etc. I have post mastectomy pain syndrome from the nerves being nicked during my double mastectomy and lymph node removal and lymphedema. It is over two years and I am STILL having major pain issues.

I wrote down in great detail exactly what my pain feels like, exactly where I feel it, how bad the pain is, how it limits what I can do,when I feel it, what triggers it, etc. Over two years I have gotten to know my pain very well. Anyway, I took in my written sheet of very specific information about my pain. My breast surgeon at the time started me on some pain medications for my type of pain. It wasn't enough. I got a referral to a pain clinic. I never feel like I am a drug addict looking for a high there. 

However, I know that other new doctors to my case, look at my list of meds and I can see them thinking drug addict and they try to make me feel like it. It gets discouraging.

Maybe try writing a very specific list outlining your pain and take it to your primary doctor or oncologist.

I take it you think your pain is cancer treatment, related?

jazzy1

Pain

I had lower back pain after treatments end of '09 and oncologist told me, NOT CANCER. It wasn't bad as I tried lots of alternative type things such as supplements, yoga, exercising, etc, but by March of '12 it was down my leg and very painful.  My PCP wouldn't get me a scan, which is what I wanted to find out what was causing the pain.  Considering all the alternative type treatments I tried and none worked, I would have thought my PCP would agree to scan...NOPE!!

What I did was go back to my oncologist and plead with him to help and explained the situation with PCP.  He told me okay, he approve MRI.  That told me I had bulging disk with compression on sciatica.

Now back to your pain and no help, try another doc.  SOme docs just aren't working with us, so why keep beating on the same one and getting same answer.  Try a different type of doc, not same one...possibly pain management doc.  Keep on plugging and you'll find your answer as what I did.  Today I'm pain free.

Best

Jan

afschrieffer

i have been where you are

 

Eric65

afschrieffer said:

i have been where you are

 

Pain...

Chemo for tc killed my central nervous system and i will now "live" the rest of my hopefully short days with painful peripheral neuropathy, every day I spend more time in bed. For two years I dealt with pain taking only regular analgesics and gabapentin, back then I would cry for the pain was so strong. I finally went to see a pain specialist and I am now on some very strong pain killers which allow me to drive real fast to buy my own groceries and hurry back to bed. Having "survived" cancer turned out actually worse than dying from it as I'm really in a very bad position now. I wil depend on these pills I hate for life and they don't really allow me to live a normal life, reminds me of the saying- darn if you do, darn if you don't-. Everybody left and I'm dying a long miserable death lonely and with chronic pain even though I pop the strongest meds available. I remember back when I prayed for health, I pray for death these days. There's really no politically correct words but **** this cancer. I really lived a much better than average life, have every gadget and comfort available at the mall but turns out material things are nothing when one is just counting the awful long days. Take the pills or patches if you really have nodoby to help you they'll only be somewhat good for a while. Pray, just pray, I was Superman back in the day and all I do know is pray. Best of luck, you'll need it.

jazzy1

Eric65 said:

Pain...

Chemo for tc killed my central nervous system and i will now "live" the rest of my hopefully short days with painful peripheral neuropathy, every day I spend more time in bed. For two years I dealt with pain taking only regular analgesics and gabapentin, back then I would cry for the pain was so strong. I finally went to see a pain specialist and I am now on some very strong pain killers which allow me to drive real fast to buy my own groceries and hurry back to bed. Having "survived" cancer turned out actually worse than dying from it as I'm really in a very bad position now. I wil depend on these pills I hate for life and they don't really allow me to live a normal life, reminds me of the saying- darn if you do, darn if you don't-. Everybody left and I'm dying a long miserable death lonely and with chronic pain even though I pop the strongest meds available. I remember back when I prayed for health, I pray for death these days. There's really no politically correct words but **** this cancer. I really lived a much better than average life, have every gadget and comfort available at the mall but turns out material things are nothing when one is just counting the awful long days. Take the pills or patches if you really have nodoby to help you they'll only be somewhat good for a while. Pray, just pray, I was Superman back in the day and all I do know is pray. Best of luck, you'll need it.

Eric

Such a sad story as only had a dabble in the neuropathy type pains with my husband after a surgery.  Went to see a neurologist who informed him this should go away in due time.  Well....after a year it was BETTER, but not entirely all gone.  

Have you considered an alternative like acupuncture or reflexology? I do know my pain with bulging disk was hurtful, but nothing like what you're enduring.  BUt...in the end I uncovered EVERY ROCK TO FIND SOME OTHER OPTIONS KNOWING THE MEDICAL COMMUNITY WASN'T THE ONLY COURSE.  Other pain doc, as they're not all the same?   Few ideas as not sure what else you've tried.  Sounds like your pain is so, so severe.  On a pain pump?  

Best to you,

Jan

 

Eric65

jazzy1 said:

Eric

Such a sad story as only had a dabble in the neuropathy type pains with my husband after a surgery.  Went to see a neurologist who informed him this should go away in due time.  Well....after a year it was BETTER, but not entirely all gone.  

Have you considered an alternative like acupuncture or reflexology? I do know my pain with bulging disk was hurtful, but nothing like what you're enduring.  BUt...in the end I uncovered EVERY ROCK TO FIND SOME OTHER OPTIONS KNOWING THE MEDICAL COMMUNITY WASN'T THE ONLY COURSE.  Other pain doc, as they're not all the same?   Few ideas as not sure what else you've tried.  Sounds like your pain is so, so severe.  On a pain pump?  

Best to you,

Jan

 

Thanks Jan

I could use one or two folks nearby who understand like you do. I tried everything as I didn't want to go on these painkillers, held my ground for almost 3 years but finally gave in as I still have to run errands and such.  the specialist wants to switch over to patches which are even worse than the pills, after that the pump. I should have never done the chemo. Let's just hope the almighty takes me Home soon, I'm ready. He gave me such a blessed life, I really wonder what he's doing now, what this is all about.

Thank you so much, your kind words mean a lot.

E/

jazzy1

Eric65 said:

Thanks Jan

I could use one or two folks nearby who understand like you do. I tried everything as I didn't want to go on these painkillers, held my ground for almost 3 years but finally gave in as I still have to run errands and such.  the specialist wants to switch over to patches which are even worse than the pills, after that the pump. I should have never done the chemo. Let's just hope the almighty takes me Home soon, I'm ready. He gave me such a blessed life, I really wonder what he's doing now, what this is all about.

Thank you so much, your kind words mean a lot.

E/

Eric

Happy to help, but don't know if I've given you any support!!

A cancer friend has vulva cancer and diagnosed in '07.  The doc botched her up pretty bad during surgery and has tons and tons of nerve damage.  Docs tried various options to control the pain, but in the end the best option -- pain pump!!!   She lives and breathes her great pain doc, and today claims if not for him, she'd wish she were dead.  Might really reconsider this, but I do know nerve damage is really painful.

Sorry to hear you just want to be done with life, but pain is debilitating and it simply takes over our lives and thinkers.  Hope you keep on trying as possibly just one option will be the fix you've been looking for with the pain.

Best to you,

Jan

Victorious

Eric65 said:

Pain...

Chemo for tc killed my central nervous system and i will now "live" the rest of my hopefully short days with painful peripheral neuropathy, every day I spend more time in bed. For two years I dealt with pain taking only regular analgesics and gabapentin, back then I would cry for the pain was so strong. I finally went to see a pain specialist and I am now on some very strong pain killers which allow me to drive real fast to buy my own groceries and hurry back to bed. Having "survived" cancer turned out actually worse than dying from it as I'm really in a very bad position now. I wil depend on these pills I hate for life and they don't really allow me to live a normal life, reminds me of the saying- darn if you do, darn if you don't-. Everybody left and I'm dying a long miserable death lonely and with chronic pain even though I pop the strongest meds available. I remember back when I prayed for health, I pray for death these days. There's really no politically correct words but **** this cancer. I really lived a much better than average life, have every gadget and comfort available at the mall but turns out material things are nothing when one is just counting the awful long days. Take the pills or patches if you really have nodoby to help you they'll only be somewhat good for a while. Pray, just pray, I was Superman back in the day and all I do know is pray. Best of luck, you'll need it.

Chronic pain

Hello Eric, I cant say I know how you feel because when someone said that to me, I got angry for some reason.  I had two surgeries for breast cancer, but I went neutropenic after my first round of chem, (I had quite a concotion of 5 drugs) and I developed necrotising facieatis.  This is in my crotch. I was debreded of 154cc. of flesh and was "spared" a colostomy, but probably should have not been. 

All that to say, when I awoke, all I wanted to do is scream, as I was on fire. raw nerves all over the place.  Morphene 120 mg on board, 60mg of dilauted, and 40 mg oxycodone.  anti inflamitories and still no relief.  Those are doses usually reserved for terminal hospice patients so everyone thought I was already out the door. I asked for neurontin, don't ask me how I knew about it, I do not know.  It is a deep nerve pain interrupter off lable.  It was developed for epilipsy. after 90 mgs on board finally was the combo that quieted the pain to a level where at least I could sleep, not writhe.  So it took 4 months for the wound to close over, and then I began radiation.  I found out that while the surgery saved my life, my back was severely injured from the positions my legs were pulled to acess the area of debredment.  so after radiation and a little pt, I had lower back surgery on L 4,5 and L 5,6.  more pain meds.  Chronic constipation and all that anesthesia, really killed my colon movement. Joy rapture.

 

anyway, chronic pain created depression for me. I got tired of fighting. so now I have pills for depression.  I do not know if the neurontin,(gabapentine) will help you, but just fyi.

Every day, I wonder why I lived through all that, It was 09, cancer 10 back surgery, and 11, 12,13, trying to build some muscle so I can just live and take care of myslef.  I am off pain meds, but will use IB for back and muscle pain. finally weaned off gabapentine, it made me fat, but so did laying flat for 2 years. (at one point I had so many antiflamitories on board that I had a gi bleed out, and that was nearly fatal as well, but like I said I am alive.)  I just cannot use a lot of IB regularly from that.   

Dont let the pain win. Dont let the cancer treatment win. I am getting better from the depression. I have had a miracle.  I still search for why because I really need a lot of maintenance. There will be a time when we know in full.  I wonder if the reason would be to incredible to know just yet.

thats why I call myself,

Victorious.  

P.S.  If you want to read my caringbridge site lemme know

Victorious

Chronic pain

AJ,, I was including you in my comment to Eric, I know he has the neurontin, but I dont know if you had in the past. It was a certain combo of meds that helped me.  Pic your DR.'s brains for any combination of meds. Not just the pain killers, but the nerve interrupters and off lable uses of some things.  It might sound strainge but I even began to use a warm pool for physical therapy.  It has helped. somehow the 92degree water relieves the pain and the hydrostatic pressure supports my circulation.  Joint and muscle pain also becan to dissipate when I started to eat a lot of greens in juice form.  It taste awful. I hate it but it and some other naturpathic things like fish oil and other good fats. Also ask for massage IF you can handle someone touching your muscles.  at first I couldn't, but after several months in the water, massage is helpful now. Pain is caused by so many things. We just need to never give up.

Victorious

 

loving life 67

Eric65 said:

Thanks Jan

I could use one or two folks nearby who understand like you do. I tried everything as I didn't want to go on these painkillers, held my ground for almost 3 years but finally gave in as I still have to run errands and such.  the specialist wants to switch over to patches which are even worse than the pills, after that the pump. I should have never done the chemo. Let's just hope the almighty takes me Home soon, I'm ready. He gave me such a blessed life, I really wonder what he's doing now, what this is all about.

Thank you so much, your kind words mean a lot.

E/

In same boat

Hi Eric

I am 6 years into treatment and I had breast cancer that mets to bones. I am looking at pain patches and possible pumps. I use a walker around my house and wheelchair out. The pain is unbearable at times. I try to do alternative pain relief along with pain meds to improve my lot. I also try to find things to distract me from pain. I just wanted you to know you are not alone. I am in a simular boat.

LL67

loving life 67

Finding Help

I had to change Doctors in January due to Ins. I have breast cancer with mets to bones. When I met my new PCP he came accross as being afraid to take me on and said he would not prescribe the current pain medications I was using . Luckily my new oncologist wasn't so afraid, but he did refer me to a pain Doctor to regulate my pain treatment and meds while he consintrates on my cancer. My pain is spilt between the neuopathy and actual pain from cancer on bone.

If your doctor won't address it ask to see a pain specialist and they will give alternative treatments along with meds and  running scan to see what is wrong. Or change Doctors if you can't get answers from them. Be aware they may ask for urine test to check for drugs not prescribed because there are people out there who are addicts, but don't take offense it just means you have a good doctor. Also keep a record of your pain what may help, what makes it worse and where it is. Also trying using the 1 to 10 scale for pain monitoring 1 being the best and 10 the worse this helps the Doctor to decide what kind of pain you having

LL67

loving life 67

Victorious said:

Chronic pain

AJ,, I was including you in my comment to Eric, I know he has the neurontin, but I dont know if you had in the past. It was a certain combo of meds that helped me.  Pic your DR.'s brains for any combination of meds. Not just the pain killers, but the nerve interrupters and off lable uses of some things.  It might sound strainge but I even began to use a warm pool for physical therapy.  It has helped. somehow the 92degree water relieves the pain and the hydrostatic pressure supports my circulation.  Joint and muscle pain also becan to dissipate when I started to eat a lot of greens in juice form.  It taste awful. I hate it but it and some other naturpathic things like fish oil and other good fats. Also ask for massage IF you can handle someone touching your muscles.  at first I couldn't, but after several months in the water, massage is helpful now. Pain is caused by so many things. We just need to never give up.

Victorious

 

Great ideas

I to tried different therapies that have helped my pain. Also add an apple or another sweet fruit when making green juice it will help sweeten naturally and taste better.

LL67

HarvestMoonHaven

Radiation poisoning, pain & pride.

I am also one dealing with chronic pain. I first beat 3rd stage cervical, ovarian and uterine cancers all the way back in 83, I was only 26. They convinced me that the radiation would be the icing on the cake; welp; those words haunt me; cause I now have another two cancers..actually three; colon, bladder and the urethrea were destroyed by the cancer AND the radiation. I was told that stuff continues to kind of..cook us, forever. Thus the need for green drinks, lots of water. I read up everything on healing with herbs and foods and except for the pain issue; I am cancer free; two years last month. I am now an ostomy patient for life of course and that is not an easy thing; dispite what they try to say about going back to a regular life; except;   you have a hole in your abdomen and a plastic pouch there with gooooey adhesive and a bard bag that is your replacement bladder. I HAD both ostomises, so I guess I am still blessed. I JUST walked (staggered) out of the pain clinic here; I sat waiting to see the doctor for over three hours. Soooo busy, he never stopped by the room!! I am hoping the links this site provided me thru live chat will finally appear in my email box so I can try to contact REAL doctors, not pill pushers. We are not the bad ones; we are the survivors; do not allow them to make you feel less than. I wont. And Eric?? I hope you are okay, and found relief..I know how hard this road is; my dad just passed from this crap and he was my support; so ...I know. I hope somehow, someone has come to help relieve your pain...though I too have had much ....adventure this time around, I do not want to go just yet. Blessings.

nfu

Long Term Pain Help

Find a Palliatiwe Care or Pain Mgt specialist. Some trained as anesthesiologists, others pt/rehab med.

PC is was a recognized specialty when this thread started.

Chronic pain saps who you are the the good in life.

Oncs 'treat' cancer. They do not do anything else.