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Let's Discuss...pain

Let's Discuss...pain

Posted by Lacey_adminCCS on May 2, 2019 11:23 am

                                                                                                      76f0db2c6c5e4ee61a736e59537e146f-huge-le


Pain can be a common side effect of cancer and its treatments, but having cancer doesn’t mean you have to live with pain. Managing pain is part of your overall treatment plan. Talking about your pain helps your healthcare team understand it and figure out how to control it.

Did you or your loved one experience pain? What are your tips for managing pain?
 

Re: Let's Discuss...pain

Posted by princessmaura on May 2, 2019 11:52 am

I had excruciating pain both before and after my cancer surgery...I was on opiates after my surgery, and then given Tylenol 3, which made me projectile vomit badly...I went off the Tylenol 3 after I came home from the surgery...a lot of time, I had to endure the pain without any pain medication...I did try medicinal pot for the pain but it made me feel groggy...once, the pain was so intense and went on for hours so I called the ambulance and they gave me laughing gas...
pain is a difficult subject to talk about because it can be so related to having cancer...and sometimes pain medication does not solve the problem for everybody...
 

Re: Let's Discuss...pain

Posted by Quinn on May 2, 2019 12:43 pm

Pain....I can still remember how things unfolded, as soon as I got home from having single masectomy, along with 'expander' inserted, I had to brace for excruciating pain that is to be expected, but found out the hard way after returning home from the hospital on a Sunday, the pharmacy is closed, still holding my prescription, hmm? Can I manage one night with no pain meds? Yep, I did until my friend went and picked up my meds the very next morning, so grateful for her help. That did not end there, there were other unexplained pain that left me sleep deprived & tired everyday for almost 2 months. I had tried Extra Strength Tynenol, 2X a day "as instructed by the doctors in the hospital, along with another type of strong pain meds, use when needed. I would take a extra strength tylenol, wait 1 or 2 hours, then find a friend to keep company, and go for a pleasant walk like 2 or 3 blocks during nicer weather and back home. I had to do walks because I was very wary of circulation issues can happen, if I don't move around as much as I should, so I didn't want to take chances. Once my 6 weeks of recovery ended, VERY slow stretch exercises each day until I no longer feel any pain. Again patience...It wasn't easy, as I did have my terrible, angry streaks at times, I would TRY find ways to keep myself busy, watch a movie, card game, write a page in my journal or have a friend drop in to say hello. ONLY that I am now dealing with muscle and bone pain in the late evenings and during my sleep hours, finger is pointing at my medication, letrozole's side effects...BUT I am not really looking forward to my next appointment in the late fall, where I would return to have my implant inserted during 2nd surgery. I am on the fence right now, should I have it done or other option? I will be doing more researching...

About pain, as Princess Maura said, everyone responds to pain differently, their tolerance for pain, and what pain meds can work for each of us & for how long? I am very curious & would like to hear others describe how did they manage their pain?

Quinn

 

Re: Let's Discuss...pain

Posted by DaniC on May 2, 2019 1:07 pm

I had a lot of muscle and joint pain during chemo, especially in my legs and hips. The first time it happened, I curled up on the couch with a blanket and pain meds. But i quickly discovered that made it worse!!! I found walking (slower pace and on a level trail) really helped 😊
 

Re: Let's Discuss...pain

Posted by prairiemom on May 2, 2019 1:16 pm

I had some areas of pain before cancer, in particular my left shoulder and neck area, and in my lower back, from being in back-to-back car accidents. Both are whiplash / impact injuries, and have led to degenerating disc disease in both areas. 

Since cancer, I have a specific area of pain under my right arm, at the end of my mastectomy scar on that side. It is super tender and painful to the touch, even 3 1/2 years out, but luckily it only hurts when i actually knock that area, so it's not like a constant pain. I had the odd zaps every now and again across my chest from nerve pain, but gabapentin helped with that. Pain-wise , I've been pretty lucky compared to others, I think. I have more fatigue type issues, and chemo brain than lots of physical pain. 

Steff

Re: Let's Discuss...pain

Posted by LPPK on May 2, 2019 4:22 pm

Pain is something that I have learned how to work with since 2012 when I was off work with severe pain due to three bulging discs in my lower spine. Working with an osteopath, a physiotherapist and acupuncturist over many months helped me to get my spine back to normal.
I started and continue walking daily, do stretches and yoga regularly, and do deep breathing when I need to calm down and relax.  I have become very good at reading my body’s aches and pains and try to nip them in the bud.   It is not uncommon for my family to find me relaxing my back while flat on the floor in the TV room or doing cat/cow stretches.   Only rarely do I need any medication but I have learned at what point I need to take something to break the pain cycle.
During my cancer journey I found that my pain relief skill set that I had acquired during my back problem helped me during and after cancer surgery and recovery.   After my lumpectomy surgery I took the prescribed meds for one day (they were too strong for me) and then Tylenol for another day and then stopped. Deep breathing and focusing on small tasks helped to take my mind off my pain/discomfort were very helpful.  I found working through the exercises recommended after breast cancer surgery I was able to work out the kinks and get my muscles working normally again. Rubbing and massaging cream on my breast and scars while going through radiation treatment helped to heal the scars and make the pulling and pain due to arm stretching lessen. 
My pain relief skill set includes: constantly listening to my body, having a regime of exercises/stetches that help different parts of my body, knowing what meds help me to break the pain cycle, and if I can’t solve the pain then go to the doctor.
 

Re: Let's Discuss...pain

Posted by law on May 2, 2019 4:51 pm

Hello Lacey, et al,
I neglected to mention that I also control pain of tongue ulcers by swigging liquid Lidocaine before, during, and after eating. It tastes nasty, but numbs the oral cavity to allow me to swallow more easily.
(law)

Re: Let's Discuss...pain

Posted by Jlo on May 2, 2019 5:38 pm

Hello all:

i had a lot of pain after each round of chemo from my hysterectomy surgery as I started chemo 4 weeks later.  I did find that meditation and visualization really helped to relax me and took away the pain for awhile.  The nurse at the oncologist's office thought I was strange and encouraged me to take Tylenol 3.  I didn't fill my prescription.  
i did find a good natural pain reliever on line (Walmart, Amazon) but it is expensive called Curaphen, by EuroMedica.  It was recommended to me by a certified health professional, and I still use it today for the odd headache.  I try to move and stretch and go for a walk every day.  I couldn't even put my shoes on  after surgery, but I initially walked around the yard, then down the street and kept going.  After each round I had to wait a few days, but then I started walking again.  Just before the year was up I walked 5K. I was thrilled to do it.    Never give up.  Keep going.  I take each day as it comes and enjoy each day.    The best to you all.  

jlo ( Joan)

Re: Let's Discuss...pain

Posted by Elsie13 on May 2, 2019 6:07 pm

Before my hysterectomy, (ovarian cancer) my surgeon suggested that I should have an epidural for pain after surgery,  (like when giving birth).  I thought that was odd, but the surgeon thought it would be great, so I said YES to that.  So for my 4 days in hospital, I had the epidural and  the nurse would come around with a small bag of ice, to check which parts of me were numb. So my abdomen was numb, didn't feel the cold, but my shoulder could feel the cold ice. However, when sitting up in bed , or getting out of bed, I was in a lot of abdominal pain, muscular pain,  for a minute or two, then I was mostly OK again. 
 At home, I slept on the living room sofa for about 3 weeks. So I could use the back of the sofa, my arm hooked over the back of the sofa to sit up.  Oh, yes, I had a Tylenol prescription, but I didn't want to use it too much.  The other technique for sitting up, it worked for me if I rolled onto my left side and used my right forearm to get up. It hurt, but not so much as when in the hospital bed. 

After each chemo session, for a couple of days, I had that aching bone feeling, so I used my Tylenol prescription for those days. 

Re: Let's Discuss...pain

Posted by SpeedyStill on May 2, 2019 8:26 pm

Pain is a very personal thing. Only you know if you are in pain and how intense it is. The Doctor or nurse will say to you from 1 to 10 where would you put the pain level.  You might say it's a 6 or maybe 7 and if you are like me sometimes you would like to say 27. 
With my non-Hodgkin’s Lymphoma it's been so long since my treatments ( 9 years ) that I can't remember most of it. This should be encouraging for those people diagnosed with the same.
I however do remember the pain during and after the bone marrow biopsy from my rump bone.  And I remember the shots of Neulasta given to me after each chemotherapy treatment which caused a lot of bone pain.
One positive thing that comes out of pain and that is empathy. I think this is one reason that this community is so good and helpful
How many people have said to you yes I have pain like that too.  I feel like saying oh I didn't know you had cancer too. In some strange way to normalize the pain they are trying to make you feel better.
SpeedyStill

Re: Let's Discuss...pain

Posted by MaryAnnR on May 2, 2019 10:44 pm

Aflter my lung cancer surgery in December 2018, I experienced quite a lot of nerve pain.  I learned, now five months later, how important it is to have a good attitude plenty of rest,, moderate exercise, and to be PATIENT  We often have expectations of ourselves, but I learned that I needed to take things slowly at first, and then to always look to each new day as an opportunity to do a ittle bit more that was within my limits and was reasonable.  Pain is experienced differently by each person.  I am only now beginning to feel stronger, and have much less pain.  I found if I went for a short walk, or worked on one of my hobbies, that that helped.  Talking with another lung cancer patient recently, he mentioned the very same...it takes time and PATIENCE...and the pain will subside gradually.  I am now taking much less pain medication and able to do much more because of it.  So, be patient with yourself...take what medications help you...and always, always have a positive attitude knowing that your situation WILL get better.  Do not give up!

Re: Let's Discuss...pain

Posted by WBCumm on May 3, 2019 12:43 am

My severe pain began about 5 days in to my daily chemo/radiation treatments for anal canal cancer.  My bottom was burning.  All day, all the time, but especially when I was sitting and when I was laying in bed.  I wouldn't wish it on my worst enemy.  

On the sixth morning of treatment I literally staggered into the radiation clinic, my eyes all glassy, and I cried out to the technicians that I couldn't go on like this. I was miserable.  I was on the toilet many hours each night (don't even ask about THAT) and I could barely get a couple of hours sleep.  I had no strength, no energy, I felt like a Raggedy-Andy doll that had been run over by a truck.

From that day onwards, for the next 5 weeks, I had a standing appointment at the Oncology Nursing station immediately after treatment.  God bless Oncology Nurses.  They cleaned me up, they lifted my spirits and they called in an Emergency doctor who prescribed various medicines, including opiates (which worked only marginally).   I was surprised that the pain treatment was almost hit-and-miss, mostly miss.  Nature of the beast?

I got the most relief simply soaking in a lukewarm tub of water at home.

In any case, I survived.

Re: Let's Discuss...pain

Posted by princessmaura on May 3, 2019 1:27 am

Elsie13‍, I did exactly the same thing you did...I had to get up from bed by supporting my body on one side and carefully sliding myself off, while holding onto my dresser for support...it was hard to initiate moving from one place to another, also...
LPPK‍, you have some excellent ideas on pain management such as listening to your body...I believe that if I had rested more and stayed more hydrated, my pain would not have been so intense (sister was visiting so things were hectic)...

Re: Let's Discuss...pain

Posted by MrFido on May 3, 2019 12:43 pm

My approach to pain management is somewhat unorthodox, but effective for many chronic conditions.
The fact that chronic pain becomes manageable, would suggest that some short term pain or hightened pain can also be addressed.

There's some good news / bad news associated with my 'prescription', but I know that relief is worth pursuing - so you'll be out of pocket and 
you'll need to do some footwork. Therefore, there are likely many who would throw my suggestion(s) aside. So be it .....

There is an 'off label' drug used for chronic pain management that has changed my life for the better. I went to my GP to get a prescription that was 
pointed out to me by my naturopathic doctor.

It is called LOW DOSE Naltrexone. I take 3 @ 1.5 mg. daily (at dinner time), but anytime is fine because there are NO known side effects.
Naltrexone is typically used for addicts that are withdrawing from narcotics or alcohol (at a much higher dose).
You will need a compounding pharmacy to make it for you, seeing as it is being 'custom' made for the 'off label' usage.
It is fully legal and relatively / affordably  priced  (about $0.50 each in quantities over 100).
I encourage anyone to Google it - you'll be surprised.
You will also find some significant relief from 'body and 'nerve' pains. 
I use it for severe arthritic pain - it has changed my life for the better.

Last, but not least, consult a doctor about medical cannabis. There is enough written about this topic, that I need not expand further.
Those that object to 'taking drugs', should ask themselves about the drugs and side effects they are already experiencing.
We are BORN with an internal 'endo-cannabanoid system' that has genetic READY MADE receptors that the plant can provide to us.
Cannabis is one of our BASIC natural herbal remedies to help balance us out.
In fact, MOST living organisms have an endo-cannabanoid system as well.
Think of your pets, fish, birds, reptiles - just about any living thing.
You think I'm exaggerating ?
You would be wrong .....

Google it - do some research ! 

After all, it is pain management that you seek ?

Re: Let's Discuss...pain

Posted by ACH2015 on May 3, 2019 1:03 pm

My tips for the pain I suffered prior to and after all the treatments:

1) Find out the root cause of the pain. Is it nerve, referred, swelling, acute, chronic, bone, phantom - the list is endless. Many of us suffer from more than one type of pain. That can mean several types of medication to address the totality of our pain. Understanding the differences, triggers and specific medications, exercises, diet etc.. is critical. Pain specialists in hospitals along with your oncologist, surgeon, GP, etc... can work in concert to assess and address our different pains, their origins and the causes.

2) Keep on top of it and address it at its lowest level. Taking any type of medication when your pain is at a 10 out of 10, is too late. It leads to unnecessary increases in medication and the possibility of reaching tolerance levels that render that medication redundant and useless.

3) Keep on top of doses, and reduce, increase or switch up as required. My tumor and nerve pain was always an 11 out of 10. That began to change for the better after surgery #2. Decreases in opioids was almost instant, and nerve pain meds decreased shortly afterwards.

4) Don't be afraid to resume a medication you may have stopped - as required. Like so much in other facets of cancer treatments - trial and error as well as "what works for you" can take time, investigation and research.

5) Keep your medical team in the loop, and keep track of your pain and the medications used or in use, in journals or daily check lists for reference.

Its your pain, and these are my suggestions to help you gain and maintain control.

Keep well

ACH2015 - Andy.

Re: Let's Discuss...pain

Posted by luvcurling on May 3, 2019 2:35 pm

Pain; it can be our friend or it can be our foe! As our friend it tells us when things aren't right. As out foe it becomes excruciating and then difficult to control. 

My experience with pain is that is it can become debilitating, exhausting and mentally draining. My pain started with surgery, then came multiple complications, and now I'm experiencing pain from the treatments.  

Each of us needs to find out how best to deal with, handle our pain. Yes, find the root cause - takes notes of when it happens, learn what's normal for you. Describe it as best you can so when you discuss it with your team so they can better help us. Remember, they can't read our minds - I learned this the hard way. We need to speak up and do out best to explain what is happening to us. Unfortunately, what works for one person does not necessarily work for someone else, so it is quite a bit of trial and error. Be open to new methods as suggested by your team. 

Non-medicinal options that have had varying levels of assistance for me include Tapping, meditation, mindfulness, gentle walking, puppy love, distractions (crafts, tv, audiobooks, puzzles), visits from friends to talk about non-cancer things and finally to laugh. I love to laugh!

Medicinal options include Tylenol, tramadol (lots of nausea with this though), codeine and yes laxatives to counter the effects of some of these. I did find Advil (Ibuprofen) to work as an anti-inflammatory, but have been asked to not take this so my platelets don't drop too low. 

My friend reminds me to keep CBD oil as an option - she found it very distressing this week when my pain hit an all time high as a result of the Docetaxel combined with the Neupagen (filgrastim) injections that I need to give myself after each chemo. The only thing that helped was laying as still as possible and taking the codeine every 4 hours as directed by my NP. As soon as possible I was up moving gently and moving all my "hurting" joints, bones and muscles.

I think that's it for me. Good luck everyone. There are lots of great suggestions that have been posted and likely to be posted yet.
luv curling - Colleen

Re: Let's Discuss...pain

Posted by Essjay on May 3, 2019 4:40 pm

If there’s one thing I’ve learned through my life it’s that we all experience pain differently, and our tolerance for it varies...

I’ve lived with pain all my life - I have joint hypermobility and dislocate joints easily, everything from my neck to my toes, usually at the most inconvenient time, or in the most ridiculous circumstances. My tolerance of pain is high. The medical fraternity consider the pain of dislocating a knee to be worse than child birth, all I know is that it is painful enough for me to not be in control and I don’t want to be touched anywhere. I have always found that medical staff have been very attentive to my pain needs for physical pain - probably because they can see the results of the injury, otherwise they just want to stop my groaning!

Last year I had a kidney stone - on a scale of 1-10 the pain was 12! In dealing with that pain I discovered my allergy to codeine. I wouldn’t wish a kidney stone on my worst enemy...

Through my cancer journey I have been lucky on the pain front I think. I had nerve pain for 2 months after my surgery which painkillers didn’t touch, and which drove me crazy, but knowing what it was and acknowledging to myself in a mindful way was half the battle to getting my head round it. It exhausted me, and distraction was my main coping mechanism. I have always found exercise helps too - endorphins are our body’s natural painkillers so anything that gets them flowing helps significantly.

On Taxol, I had terrible joint pain. Not like when I’ve dislocated a joint and it’s a single joint bothering me. It was everywhere. I didn’t cope at all well the first time it happened, and Advil and T2s were just not sufficient. However, I made a decision not to have narcotics. I wanted to be able to drive and maintain my independence, and I’m really nervous about addiction having a sister who has recently come off Oxys after 4 years on them for a back injury. I found my docs really not that helpful or understanding - they didn’t get how painful it was or the impacts of the pain on me. I turned to CBD oil and got some help with mindful meditation from the counsellor at the cancer clinic. These got me through the rest of my chemo, along with distraction, and a little exercise when I was up to it.

Next is radiation - and I anticipate some burning, and some pain...

Re: Let's Discuss...pain

Posted by Luckysgirl on May 8, 2019 12:43 am

My hubby was taking high dosages of tramacett and tramadol. 
The last 2.5 months has been on CBD and THC, and totally off all pain meds
He started off on 10 mg of CBD for 1 week, and less than 0.1 ml of THC, with THC you take small doses and move up as you tolerate it.
He is now up to 5 mg of THC and 20-30 mg of CBD. 
Takes THC at night around 830 pm, or when i know he isn't operating or driving etc. 
He sleeps Thur the night, and has been walking and able to enjoy the day
He is tired, but that is from the chemo

Re: Let's Discuss...pain

Posted by Lacey_adminCCS on May 16, 2019 3:11 pm

Thank you all for sharing your experiences and tips to help others. Would love your feedback on the following tips and whether they have worked for you?

Talk about your feelings-Pain can affect your thoughts and feelings, as well as your body. It can cause many different emotions. Many emotions, such as anger, fear and worry, can also make pain worse. Talking about how you are feeling may help you manage pain.

Track your pain- The more detail you can give your healthcare team about your pain, the better able they will be to help you. It might be helpful to create a pain journal or diary to keep track of your pain over time. A pain journal can help your healthcare team assess your pain and see how well pain medicines are working.

Try relaxation techniques- Relaxation can reduce muscle tension, which can relieve pain or keep it from getting worse. Relaxation can also give you more energy, reduce fatigue, anxiety and stress and help with falling asleep. Relaxation often improves with practice.

Focus on something you enjoy- Distraction is another way to help you draw attention away from pain by focusing on something fun or relaxing. Examples of distraction include reading a book, doing puzzles, playing a board game, watching a movie, listening to music or doing a hobby.

Keep in touch with family and friends- Pain can make you want to keep to yourself and avoid friends and family. But keeping in touch with friends and family is good for you and can make you feel better. Try short visits or even visits on the phone.

Ask for help-Living with pain is very tiring. Try to focus your energy on the things that are most important for you to do and ask for help with other tasks

Try to be active when you can- Being active can take your mind off pain. Physical activity can block pain signals to the brain. It can also relieve pain by stretching stiff or tense muscles and joints. Simple everyday activities like walking, gardening and dancing can help relieve pain.





We have a great booklet: Pain Relief: A guide for people with cancer.





 

Re: Let's Discuss...pain

Posted by jorola on May 26, 2019 12:28 pm

Chiming in here. Although I do not have cancer pain i have arthritic pain from severe osteoarthritis in many parts of my body and my husband has severe peripheral arterial disease in his left leg on top of the side effects of his stage 3b lung cancer. Plus in my job I work with injured people along side doctors and specialists, physio, occupational therapists etc. For those who do take opioids (I do but my hubby does not) I am going to cover a couple of different perspectives here but I encourage to read to the end as you might be surprised by the ending. I'l try to keep it short - anyone who knows me knows that is easier said than done for me.
  • We all know that there has been a growing concern about the use of opioids
  • Many practices have been put into place by the government and various colleges of physicians to track, monitor and reduce the use of opiods
  • Drs I have spoken to, including pain specialists, agree that causes for misuse of opioids are from both drs freely prescribing large amounts of unnecessarily heavier dose meds like percocet and oxy for minor injuries then not properly monitoring their patients and also patients misusing the medication
  • For most injuries a prescription of opioids lasting no more than 12 weeks is recommended
  • However for chronic or severe injuries it is recognized that longer term treatment is required
  • The link Lacey_adminCCS‍ gave to the booklet is a very good read. It is important to understand your pain so you can communicate well with your dr to ensure you are on a unified approach on tackling the pain. Based on the type of pain you have there are specific drugs designed for that. For example opioids are not effective on nerve pain but meds like gabapentin and lyrica are. As also shown in that booklet there may be other medication options that are not opioids like antidepressants. Many of those (even more now than listed there) are used to help calm/block pain receptors.
  • Know the side effects of the meds you are taking and be sure to tell your dr. These side effects can have serious consequences. It does not necessarily mean the dr will stop all opioids but rather find one that will be less harmful to you.
  • IMPORTANT SIDE EFFECT - Did you know that most opioids are designed for short term use only? If taken longer they can actually begin to accentuate your pain,making it worse? So when you feel like the meds are not working as well or your pain is getting worse, it may be your meds working against you. It is called Opioid-induced hyperalgesia.
  • In my opinion pain specialists are a true asset. These are anesthesiologists with additional training specializing in pain management. If you have chronic pain I encourage you to get referred to one.
  • Chronic Pain Syndrome is more than just chronic pain. It is also known as Complex regional pain syndrome (CRPS). The Mayo Clinic defines it as, " a form of chronic pain that usually affects an arm or a leg. CRPS typically develops after an injury, a surgery, a stroke or a heart attack. The pain is out of proportion to the severity of the initial injury." Sometimes it can also occur with cancer treatments.  Although not  common and still not clearly understood, there are some treatments and approaches that can assist to deal with it and it usually resolves on its own.
Information is power. The internet can provide excellent information just ensure you are using reliable and reputable sites. Research and discuss with your doctor.

I did find this resource on chronic pain that reviews every angle of tackling it - from yoga and mediation to medication. I hope you find it as helpful as I did.  American Chronic Pain Associate - Resource Guide
And this is just a list of multiple links given by US National Library of Medicine on Chronic Pain

Take care
Jodie 

Re: Let's Discuss...pain

Posted by Beespecial on May 30, 2019 11:56 am

When I was going through treatment in 2017 (for invasive lobular stage 3 breast cancer), I remember the only significant pain I had was bone pain, if I remember correctly due to the Neupogen shots I had 8 days out of every cycle. I did take Tylenol 3's sometimes, when it was really bad.  Also, Claritin helped tremendously. Something about the histamine build up from the Neupogen -- weird but it worked.   I remember sleeping a lot during that time, pain is exhausting. 

I've recently been diagnosed with stage 4 metastatic breast cancer, since my cancer has moved to my bones (my hip right now). I had Zometa infusion and the first two days after, I could barely walk. I was in bed, nothing helped. I slept alot. I guess that's one of my coping mechanisms.  They say future infusions won't be as bad.   I hear all of you with pain, I'm so sorry you're going through it. 
Belinda