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Pain relief

Hi ladies

I’m struggling with pain and have tried various combinations of paracetamol ibuprofen co-codamol but some days it really gets me down

My oncologist tells me to take morphine but I’m very reluctant

What do you find helps?.. I have extensive bone mets

Barb XX

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I take Vimovo which is a prescription naproxen and stomach pill. I also take hydromorphone. I too have extensive bone Mets. I just had my hip replaced due to my bone Mets and I am trying to wean off my hydromorphone

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Hi Sarcie

I think I’ll just have to take the strong stuff..I have morphine 5mg capsules which are sitting on top of my fridge and being ignored..I feel quite smug with myself for not taking them but suffering in the process which is rather silly of me but I feel by taking them I’m giving in to the disease..does that make sense?

I’m terrified of getting hooked but then I’m so miserable in pain

Dilemma!

Barb xx

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As my doctor and nurses told me it makes no sense to suffer. Being in pain just makes things harder for you b

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Hi

I know you’re right..just feels I’ve given up...but I’m the one who’s suffering and it’s mad

My oncologist seems to think it’s normal to take morphine..she prescribed it months ago when I was first diagnosed..it’s the smallest dose so I’ll try for a few days

Barb xx

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Good luck.

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Barb hope you have good pain relief soon and that is a small dose. Remember addiction only happens when you take pain pills for the high not when you take it for physical pain. Sending positive healing vibes your way.❤

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you must not suffer. if you take the tablets like normalbyour fine.to stopb is not a problem.if pain is not there as in cured you will not be hooked.you would only get hooked if abused to many.normal taking then stopping them will be alright.be good to yourself take them but just enough.pain free better than piling them up.good health to you.

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Hi Barb,

I can understand your reluctance to try morphine, but perhaps it will help until you recover from your surgery. My oncologist prescribed codeine for when I first started treatment. I was in a lot of pain as my body adjusted to treatment. Could that also be an option for you?

I hope you feel better soon.

Sophie ❤

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Hi Sophie

I’ve just had a really bad day with quite severe pain..yesterday I was reasonably ok..took codeine and rode my horse then just some paracetamol

It scares me to think I’m going to have a life of worsening pain..don’t think I can live like that..

Thank you for being compassionate

Barb xx

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Hi Barb,

I find it hard when I am in pain too. I just want to feel normal and not have to rely on painkillers. When I had radiotherapy back in August I had such a severe reaction to it. I was in a lot of pain and felt miserable for five days. I took a combination of paracetamol, ibuprofen and codeine on two occasions when it got too much. If you are still feeling like this tomorrow I would take action and call your oncologist or an oncology nurse. You don't want to suffer.

Take care,

Sophie ❤

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Hi Barb.....I'm sorry you are in pain. I used to have to take Tylenol with codeine every 4-6 hours when I was first diagnosed just to get through the day but I haven't taken them since June. They were extremely constipating for me and that was a problem I have never had in my life. I now take extra strength Tylenol only and usually only a couple a day. (Honestly I would much prefer to take Motrin but am not allowed anymore since I started on the blood thinners for my pulmonary embolism.) I guess I will say that I am always in pain and maybe I just cope but that is me. I use a heating pad and we are blessed with an infra red sauna in our house which I also find helpful.

My oncologist also offered me morphine back when I could not get relief but I refused as I wasn't ready for that. I also have extensive bone mets. Hope you find something that works for you soon. Take care.

Sandra

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Morning Barb,

How are you feeling today? Do you feel any better than you did yesterday?

I think sometimes we want to tough it out without pain relief, but that can make life such a struggle. When I attended my last back exercise class last Tuesday one of the men was telling the physiotherapist about the severe back pain he was experiencing and the first thing the physiotherapist asked him was "are you taking anything for it?" He told him that he wanted to push through the pain barrier. I wanted to tell him he didn't have to be brave, but get some relief. But he was determined to manage on his own.

I hope that you are feeling better today.

Sophie ❤

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Morning Sophie

I’m completely pain free at this minute but still in bed!!..disgraceful behaviour!!

I’m a bit weepy as I don’t know how the pain will be until I start moving about

I’m going up to see my horse this morning and have booked a shiatsu massage this afternoon..never had one before so see if it helps..hope so

How are you?..do you work full or part time?.. I hate this life at the moment as I used to be so busy and mixing with lots of people..now I’m by myself a lot and it can get me down

Sorry to be a misery

Barb xx

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Hi Barb!

That's great news that you are not in any pain. I have just had a nice relaxing Epsom salt bath before I start my day. I normally wait until the end of the day so I can have something to look forward to later in the day.

I'm sure seeing your horse will be great therapy. Enjoy your massage. I'm having my next complementary therapy session on Thursday. I was supposed to have it yesterday right after my CT scan, but the therapist called to cancel. I was hoping to fit both appointments in the same day, so I don't have to make two trips to hospital this week. Are you offered free complementary therapy sessions in Nottingham? I only found out that cancer patients qualify when I stopped by my Macmillan centre. Macmillan doesn't actually offer it though, St. Nicholas Hospice does. That's what put me off at first, as I thought they only dealt with end of life care, but they care for cancer patients too.

I am doing well, thanks! I run my own pet sitting and dog walking business, but I work part-time at the moment (I'll be starting in an hour). I haven't taken on any new clients since my diagnosis in March and I am happy with that for now. I am worried about taking on too much and then struggling to juggle all of my appointments and get enough rest. As things stand, I can make them all. One thing I do more of now is rest, even if I am not feeling tired. Back in August I stubbed my toe and was scared I had broken it, as I heard it crack when I tripped over my foot and nearly fell over. (Yes, it is possible to trip over your feet. I managed to find a way!) My feet are my main means of transport, so I didn't want to be out of action for any length of time! I was at a house/pet sit near home, so I had to ask my husband to come over and help me with the pets I was caring for.

By the way, you are not being a misery at all. Spending a lot of time alone can be quite isolating. I am with clients' pets rather than other people a lot, but I also try to make time to go out with friends. That really helps.

Take care and I hope you have a good time with your horse!

Sophie x

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Hi Sophie..you could indulge yourself and have two Epsom salt baths today!!

I just go to a natural health place down the road from me..haven’t sorted any complementary treatments at the hospital because it’s a trek to go there and I just hate the whole hospital environment thing

If I go somewhere ‘normal’ then I’m not reminded of my situation..that’s just me!! The place where I go for my scans bloods etc has a big sign outside ‘Cancer Centre’ just seeing that upsets me and I hope nobody I know sees me going in as it’s a bit of a giveaway..I defo need some horse therapy today

Just let my bunny out for a hop round my sitting room and he’s chewed my husbands phone charger wire..lol

Have a happy day and I’ll try to as well

Barb xx

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Hi Barb!

I know what you mean about having to trek to go to appointments. Although it only takes me about half an hour to get to hospital, it is still time out of my day. That's why I booked this month's complementary therapy session for yesterday to coincide with my CT scan. I really didn't want to be driving back there twice this week. But as it is, I will be making a second trip.

I have my scans at the hospital, but I visit my local health centre in town for blood tests. It's within walking distance, and I don't feel like I'm so much a "patient" when I go there, as so many people go there for blood tests, and other reasons.

Sorry to hear about your husband's phone charger. Hopefully you have a spare charger he can use! Naughty bunny! Enjoy your horse. I have seen my clients' pets for the day, and am relaxing now and enjoying my afternoon. I think it's time to put the kettle on.

Sophie x

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Hi Sophie

Haha he hasn’t noticed phone charger yet..he can use mine if it stops functioning though

Hope your scan results are what you hope for..I’m having one in two weeks...eeek..worry every time

Barb xx

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Hi Barb,

That's good you have another charger. Pets can be so naughty at times!

Thanks for the well wishes about my CT scan results. I am hoping for good results on the 19th. I hope your scan goes well too!

Sophie x

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Hi Barb.....I'm glad you are having a better morning. I can totally relate to your feelings of isolation. I used to work full time for 30+ years and loved both my job and the interacting with people. However since I initially developed my pulmonary embolus in March which ultimately lead to this diagnosis I have not been able to work and will not return. I live in the country so most days it's just me and my beautiful dog for most of the day until my hubby gets home from work. Most of my friends were all from work and I have only told a couple of people of my stage 4 diagnosis. Several of them keep in contact via texting and several I have lost touch with because I think they just don't know how to deal with my diagnosis. It certainly can be lonely at times. Take care and enjoy your visit with your horse.

Sandra

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Hi Sandra

You understand what I mean about missing work and people..even though I planned to retire in July I ended up leaving in April as I was a wreck and couldn’t possibly have continued..I was going to have a big retirement party at the races but cancelled that as I couldn’t see anything to celebrate!! Didn’t see the point

I enjoyed my time with my horse today but idiot forgot my mobile phone and the yard was deserted so I didn’t ride as if I came off had no phone to let anyone know my horse would be coming back on his own!!or get help if I hurt myself...years ago I wouldn’t have given it a second thought..no mobiles..no riding hat or body protector..would have just gone off without a care in the world..how things have changed!!

All the best to you and thanks for your post

Barb xx

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Narproxen is really good morning and night. Morphine has never worked for my Mum x

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Hi Bobbie

Yes they work differently on each of us..I find naproxen upsets my tummy but then they all have side effects and morphine is horrid for constipation

What a life..ugh

Barb xx

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It isn’t nice at all. She takes omeprazol and antil sickness tablet they seem to help. The morphine just didn’t take away the pain for her at all. She uses heat patches quite a lot too. X

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Hi Bobbie

Hope your mum has a good day today..give her my best wishes..none of us girls deserve this

Barb xx

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It’s my birthday today. We are going out for breakfast. She is really pleased that it’s chilly so she can wear her new fluffy hat to hide her thinning hair haha. She takes the positive out of everything. I don’t know where she gets her strength. You are all amazing dealing with such horrid stuff. Much love. Have a good day too. Oh I forgot to add that she take tumeric capsules at night and she definitely thinks they help with pain. X

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Happy birthday have a super day

I make my own golden paste with turmeric (from amazon) black pepper and coconut oil..not expensive..it reduces inflammation apparently

Barb xx

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Your elixir sounds amazing! Important though to mention the turmeric to our physicians as it can interfere with some treatments. I am on Ibrance and turmeric is not recommended if you are on this therapy. Hang in there...you eeem very proactive and positive.!

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Hi there

I did ask my oncologist about turmeric with Ibrance and she said it was ok to take

Barb xx

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Thank you...good to know. I will ask also. Seems like a number of women who take Ibrance also take it. The other drug we take...mine is letrozole but I think you said you took a different aromatase inhibitor—-causes joint pain. I like you want to include other treatments other than opioids to help. So happy to meet you on this board!

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Hi again

I’m on letrazole as well and I blame it for painful joints as I was on only that for a few months until I started Ibrance which didn’t appear to make the discomfort any worse..I know we all react differently

All the best to you

Barb XX

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Hi Barb, I have extensive bone Mets and I understand your pain. None of the non-opioids have ever worked for me. I do take extra strength Tylenol as a supplement but I have to take opioids to function. I was on oral morphine initially and it worked well. I also take oxycodone for breakthrough pain at times. But what seems to do the best for me is a long-acting opioid. I am on a fentanyl patch. I put it on and it stays on for 3 days and then reapply. I can function and go to work as usual. It releases the drug all day long so you don’t get that feeling of drowsiness or fuzziness like one can on short acting opioids. Good luck with everything. Let us know how it goes!

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Hi there

I’ve not heard of those pain patches..what a brilliant idea instead of having tummy upsets with oral administration..I shall investigate this.. thank you so much

I don’t think the meds I take help as their side effects are joint pain...ugh hate this life

Barb xx

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I know that alot of cancer patients worry about getting hooked on the strong pain meds, especially opiates. Talk with your oncs about that. My understanding is that pain creates changes in the chemistry of our brains and that those "addictive" pain meds work different in a brain with pain and a brain without pain. Bone pain can be excruciating, and there is nothing weak about taking pain meds so we can do more of the things that we want to, and need to, do! I had a bit of trouble after a surgical procedure a few years ago. It was long enough ago that I don't remember the name of the pain med, not which procedure it was. But after surgery, as I was really making progress in terms of healing, I totally forgot that I had been on pain meds before the procedure, and thought I could just change from the opioid meds to OTC pain meds, and started having withdrawal symptoms. I did call the surgeons office and spoke with a PA who told me to start up the opiod drug again and what kind of schedule I should use to get off it without those yucky side effects from withdrawal. The other scientific thing to know about pain and pain meds is that once pain is under control, it is easier to keep it under control than letting it start up again and having to control it again. With surgery and injuries, the second and third days are often the worst as far as pain goes, but we are all a bit different and need to pay attention to what our bodies are telling us. I tend to think of myself as a real wimp where pain is concerned, but a physical therapist told me that I have a high tolerance for pain. I have bone mets only (for over 14 years!) but have not had pain from them so far. I do not look forward to the day that changes and have heard that bone pain can be pretty intense. My husband has a very hard time tolerating most pain meds--they make him vomit. One of the newer meds did work for him after knee replacement surgery, meaning no vomiting but he did not like the way it made him feel. Anybody who has that kind of physical reaction to pain meds would sure have a horrible time living with metastatic cancer!

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I agree that it’s best to keep ‘on top’ of pain but I’m dreadful for trying to see how long I can go before taking more tablets..stupid I know..I will devise a plan for myself

Had a shiatsu massage this afternoon..absolutely amazing..feel so much better..maybe won’t tomorrow though!!!

Barb xx

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Hi, just a thought but have you tried a tens machine? I was in agony in the spring and my oncologist of the time told me to take nothing stronger than paracetamol. I’d been prescribed gabapentine (excuse the spelling!) by the orthopaedic consultant and she strongly disagreed, so in desperation I went on amazon and found a cheap tens machine. It really took the edge off the pain and made it bearable. Also there are still non morphine painkillers on prescription, seems mad you aren’t being offered them. If your oncologist won’t help try your gp.

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Barb, I have bone mets also. My diagnosis was made after a fall and T-10 and 12 compression fractures. At that point I was at a 10 on the pain scale. My oncologist started me on the Fentanyl patch. Currently I have a 12.5 mcg. Patch plus Dilaudid tabs which I take for breakout pain. I was pretty much doing without the tabs but I had to admit to my oncologist that I was limiting my activity in order to keep from taking the Dilaudid. He ordered me to take it 3 times a day and increase my stamina and activity. I love this guy because he says that his goal is to get his patients to a point that they can live life as well as possible with this disease and that if it means taking pain medication, then so be it. I am pretty much doing almost everything I did before except for strenuous activity and heavy lifting. I’m a quilter and a gardener and I’m 71, so I have to consider the limits of my age as well. Unfortunately I’ll never be 50 again! I’m doing PT to strengthen muscles as well as massages every two weeks to relax them. It has helped greatly as at one point I was on a 25 mcg patch.

So my point is, use pain medication if you need it. We won’t get to live these days over so we might as well make them as enjoyable and comfortable as we can. I have only been on this journey since April, but I am determined to live it as best I can. I have 4 young grandchildren that live nearby (ages 3-7) so I want to be an example of living with grace no matter what my circumstances.

Good luck in your journey!

Elaine

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Hello Elaine

Thank you for this info..nobody can understand how we suff

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Start again

I’ll investigate the patches..another lady recommended them as well..I hate taking medication but looks like my life will now be living from one med to the next

Barb xx

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The nice thing about the patches is that I forget I’m wearing them because they last for three days. I don’t have nausea or get a high from them so I still feel like my self. I have continued to drive and don’t feel like they make any difference in my reactions. Hugs.

Elaine.

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Hi Elaine

I will make an appointment with my GP and request those

It makes you think about the pain more if you’re having to always be looking at the clock to see when can take the next dose of pills

All the best to you

Barb xx

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So sorry to hear about your pain. I have just began to feel some myself. I just completed 2 years on Femara and Ibrance. The Letrozole is making me achey and painful in bones and muscles. It sounds to me like your pain is much more sevier, but I will tell you what my plan is for what I am experiencing. One approach I am taking the fast, I am just now comming off a 4 day long fast. I did learn during this time that my pain decreased, so now, as I begin to reintroduce different foods, I will be carefully watching to see when the pain begins again. Some foods cause inflamation, so I will be keeping that in mind as well. I have noticed that exercise really helps me, I do some crazy high intensity stuff and yoga (I much prefer the yoga, but the in intensity is neccessary for cardio work) and meditation. I may have an oppertunity to join in a 10 day meditation. My intention there will be to come to know my pain and (hopefully) not get mentaly "stuck" to it. I once heard that in pain there is the real physical pain then there is our attitude to it and our focus to it. It is good if the focus tells you to take your hand off the burner...but if it does nothing to help you make a better decision for your wellbeing, then it has limited value. So that about sums that up. As I say, my pain is different than yours (that can be said to each one of us), so what I do may not be something that helps you. I do hear you abt the meds, especially the opoids. I did have sevier pain with a gall stone and subsequent surgery, and I welcomed the meds, but I did notice that the tylenol and asprin were the meds that really addressed the pain, and the opoids just made me not care about it! Really they made me not care about anything, in a silly "my head fell off? oh well, it will be OK" kind of way!

Just know that all we can do is our best, and I am sure you are doing that as you face this thing one of us asked for! Sending love and light your way dear sister...Michelle

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Hi Michelle

Yes I agree that pain is a strange thing..sometimes I think the mind expects pain in a certain situation and therefore the pain happens..sorry not explained that very well

I’ve started to do some yoga stretches..I used to go to a yoga class twice weekly before the dreaded mbc diagnosis but determined to get back..will get me focused..at the moment I’m just feeling despair..need to be proactive as nobody will want to be with me the way I’m behaving at the moment and tbh I think it’s down to me to do something about this..

Best to you

Barb xx

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I understand, dispair, sometimes it just takes us. My very best to you in finding your way out of it!

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