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Barb feeling dreadful

Hi ladies

I tried the morphine patches for my pain but couldn’t handle the side effects so I stopped them and think I might be going through some sort of withdrawal

Feel sick and dizzy and very depressed..have to force myself to get up and shower etc...didn’t put make up on yesterday and that’s not me

I’m not eating so have no energy...any ideas that I could eat:drink to increase my energy?

I’ve even said to hubby that I can’t face Miranda’s wedding which worries me...also I’m not interested in going to Burghley horse trials this Saturday and we go every year...I’m scared of going far from home in case I collapse or something...two friends today have asked me to go round and I’ve made excuses

I’ve never felt this low before and been thinking of ways to just end it all which is awful but only bringing forward the inevitable

Sorry ladies for this post but I know I can divulge here

Barb xx

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Oh no Barb! Sounds terrible... I have always be told at my hospital that they will consider radiotherapy when pain is too much. Might be worth checking. You are having the 3 worse things pain , fatigue and nausea... And the timing is just rubbish. You should probably try to get them to look into pain management and side effects of what you are being given and may be take a bit of a break from some? I am so sorry you are feeling rotten , it is so hard to go from a place where we can do everything and feel like we are slapping the disease in the face to a place where it just gets too much and we suddenly start to feel unwell and effectively " sick"... I am so sorry I can't help more but I really think you should not underplay this with your medical team and ask them to check it through ....Thinking of you...

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You have helped just by replying and being kind

I’m actually seeing my oncologist tomorrow so I’ll tell her this

I’ve made myself eat 2 hot cross buns and drank plenty water...went for a little walk to the shop for the buns and was weak when I got back

Thank you

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How did it go today? I hope they were helpful and you feel a bit better.Thinking if you.

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Hi Barbara 🌺😍 Come on honey you can 🙏. You are wonderful Clear your mind. I personally drink and eat many berries between meals. I take pain reliever like Tylenol. I put on bengay cream and do things little by little. no hurry Get up. Eat your breakfast calmly. Clean your body a little from those strong medicines you mentioned. Give your body and stomach a break. Take a tub bath with foam and epson salt. I am convinced that analgesics create a dependency.

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Energize and open the windows. Take some sun. Cheer up. If you can 🌺❤️ We love you very much in this group of beautiful ladies. Support yourself here, relax. One day at a time. We will win ❤️🙏

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Thank you

I have sat outside for s bit with a book but not spoken to anyone today so a bit sorry for myself

Have decided to go to one of my friends houses later as she’s funny and might lift my spirits

Barb xx

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So happy you are going to visit a friend later. Good for you Barb!!!!

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Ive read that coming off morphine has side effects. Flu like feelings and aches and pains that last for a few days.

Hang on in there!

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Yes horrible effects but I cannot do without some pain relief so I’m cutting down generally but very difficult

Not even been to see my horses as do downhearted and I’m really worrying over the wedding

Thanks for being kind

Barb xx

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Have you tried MST continus?

Morphine, slow release. I take one twice a day

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I have some of these from ages ago...mine are called Zomorph...might try those..will ask tomorrow...just morphine seems a bit last resort and those patches were awful...and they’re on for 7 days so I felt as if I couldn’t control the dose...seemed like s good idea at the time!

Barb xx

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Well im using them for arthritis :) the oncologist thought it was cancer mets in my spine but its been proved not to be that. Theyre used for chronic pain as well as terminal illness :)

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Do you need to take other meds as well for breakthrough pain?

Stupidly I was taking other stuff as well as the morphine patches and I know I overdid it as it’s impossible to be sure how the drug is absorbed through the skin or how much...at least with pills it’s easier to monitor

Barb xx

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I take oral morphine at night as necessary to get to sleep. If the pain is really bad i take cocodamal which takes longer to work but keeps me asleep longer. That gives me control xx

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I don’t have pain at night thank goodness it after getting up it comes on with a vengeance ...no problem if I lie on my side

I suppose I can try different doses times etc but will have s word tomorrow

Thanks

Barb xx

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Hi Barb,

I think it would be a good idea to speak to your oncologist, oncology nurses or GP and tell them what you have said on here. You should not have to suffer alone or in silence while you try to work on how you are feeling. Miranda's wedding, the horse trials, these are important events that mean a lot to you, so that just shows that you need help to get you back to where you can face these events. Not just face them, but enjoy being there.

Are you not feeling hungry, or is your mood that has put you off food? Maybe you can try a rich, creamy smoothie to help with that. I sometimes add cacao powder, blueberries or blackberries, frozen bananas and some almond milk.

There must be some other kind of pain management that does not have such horrible side effects. I'm not a medical professional, so can't advise about that.

Please let us know how things go, Barb. I hope you can make it to Miranda's wedding and the horse trials.

Take care,

Sophie x

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Thanks Sophie

Barb xx

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You're welcome, Barb. Please let me know how you get on.

Sophie x

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Dear Barb: So sorry you are suffering! Praying you feel better very soon. I agree with sitting out in the sun for 20 mins & drink lots of water & maybe some hot green tea? Help your body rid itself of the pain killer. Try your best not to think beyond the day. Think positive thoughts, tomorrow is a new day. We all have ups & downs and you are on the low of the roller coaster ride. It will get better for you ❤️🙏🌞🌻🌈!!!

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Barb,

Hang in there! You are most likely going through withdrawal. For morphine type meds you generally need to be weaned off with decreasing doses.

Call your onc and tell them what's going on!

Hope you feel better! You will with time. You are strong!!!!

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Oh, gosh, Barb, I'm so sorry for what you're dealing with...and so glad that you can come here to share.

Perhaps you should gradually reduce the morphine vs. a hard stop, i.e. find a balance between the side-effects of using the patches vs. the side-effects of not? This actually strikes me as a potentially serious issue, plus there's no reason to suffer more than necessary. I believe there are drugs they can give you that help. I agree with the others that a consult with the doc is in order and perhaps also someone who specializes in this.

Please take care...

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Thanks Lynn

Seeing my oncologist tomorrow...just coincidentally...will tell her what I’ve put on here

Barb XX

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Oh Barb. I hate to hear you are going through this. I really don't have anything to offer other than I am praying for relief and the doctors insight on what to do. You are a pillar of strength to us all on here.

Many hugs and even more prayers!

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Thank you

I need hugs today

Barb xx

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No apology needed.

Berocca orange might help with energy.

Easier said than done but try and force yourself to go to see your friends as Im sure that'll help. If you're close enough maybe you can talk through your feelings with them and they'll probably give you a million reasons why you shouldnt give up. If not, that's why this board's a good safe space where you can rest assured one or the other of us will have felt your despair at one time or another so completely understand.

Re the meds It probably is withdrawal symptoms which isnt helping your current state of mind. It should pass in a couple of days and hopefully then you'll feel a bit better.

You were one of the first people on here I 'chatted' with and have been there for many other ladies on here so be assured we're all here to try and lift your spirits and keep you up when you're down.

Josie x

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Barb, since I've been on this site it's been clear that you are one of the pillars of it, sharing so much of yourself and helping others with your wisdom, humor and horse photos! So it's wonderful to read this much love and good advice returning to you. I'm a google hound so of course I looked up "morphine patch withdrawal" and it sure looks like you have some classic symptoms. It's such a strong drug. I love the other suggestions about eating and taking small steps toward activity. When I couldn't do much more than get down to my favorite chair I turned on the TV and watched old comedies or ridiculous new sitcoms. Reruns of "The Great British Baking Show" always make me feel good...and hungry too!

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There are protein shakes that are full of nutrients when we can't eat. Maybe try those.

They are filling and packed with vitamins and minerals. In the states we have Ensure and Boost.

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Barb, I replied to your post earlier with a long response. This is the third time I responded to a post but my comments do not get posted. Now I want to see if this appears. If not I have to contact admin and see what's going on.

Hugs

Anja

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Hi Anna

This is the only post I’ve seen of yours

Wierd

Barb xx

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I just read in a different post that Becca has the same issue with responses not posting.

I hope you feel better today❤️❤️

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Dear Barb. It pains me so much to read this post. The physical symptoms you mention that you are feeling are definitely typical of abrupt withdrawal of an opioid drug. My biggest concern though is your feeling of extreme sadness and thoughts of ending it all. Those feelings particularly when you have such positive things to look forward to that you normally would cause you so much joy really concerns me.

I see farther down that you are seeing your oncologist tomorrow.....please, please print off the post you made here (it is honest and raw) and she needs to see it. Usually when we get to our appointments we tend to sugarcoat what we are actually feeling. I honestly think that if they can actually get you a better grip on your pain the rest will fall into place. It is just not right for you to be suffering like this. If I lived close to you I would be marching you to see that doctor and not leaving until all your things were addressed and a solid plan in place.

Never feel sorry for posting your feelings and thoughts here.....that's why we are part of this wonderful board. We all want the best for each and everyone of us and I think we all put on a brave face in front of the ones we love. Please keep us updated and post your feelings anytime. We are here for you. Thinking of you as always.

Sandra

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Thanks Sandra

I’m determined to have a frank honest talk with my oncologist tomorrow...as you correctly said..we do play things down when In the consulting room ...I’m dreadful for this as if I’m trying to please her and be a good patient...ridiculous isn’t it?

Barb xx

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You are the most important part of this journey, your oncologist is there to facilitate you having the best quality of life that you can and be an equal partnership. Don't hold back....demand what is rightly yours. I'm routing for you and I know you have spunk so take it with pride to your appointment and use it. You've got this!

Sandra

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Barb - Sandra is exactly right. Show this to your doctor. I will share that after I completed radiation from my second BC diagnosis, I had a horrible delayed stress reaction. Although I didn’t consider hurting myself, I was feeling as awful as you are now. I couldn’t get out of bed, go out, etc. It was dreadful and alarming. This is very uncharacteristic of me. I told my onc and met with a psychiatrist. They were nice but I just don’t think they are as well trained in mind body stuff. Eventually I found a strong antidepressant that turned the tide. Subsequently I weaned myself off of that but I am so grateful I found it. It is truly horrible to feel this way. Plus, since you’re a strong woman to begin with, you add the extra burden of beating yourself up for feeling like this. Please reach out as often as you need to hear our support.

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Hi there

I’m so sorry that you’ve felt the same as me once but also reassured that I’m not on my own...I tried some antidepressants last year Citalopram...which made me feel ill...I also saw a therapist but it didn’t help at all...just the way I am...I find it difficult to talk face to face with a stranger for some reason

Anyway I’m out of bed..just going to get ready and go for a reflexology session which usually helps

All the best

Barb xx

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I'm like you and have trouble talking to a stranger about things. I did see a psychiatrist who prescribed Effexor which has helped tremendously for my anxiety. It also works as an anti depressant. No side effects that I can notice. It takes a few weeks to kick in but worth the wait. It might be worth a try . Please take care.

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Barb- Love, please never fear being honest here with us all. All our arm are aching to reach and hold you in a “we get it” embrace. You’ve received so much good advice from others, I can only add that a Pallative-care specialist should contacted to join your team. I say this as I and other family members are so negatively affected by morphine and other narcotics we counsel with P-care specialists regularly. They have such a greater arsenal at their command than our “regular” ones and physicians.

Be patient with yourself, let others help, and you’re not allowed to beat yourself up when you need to simply R E S T. k

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You are so kind and I’ve been utterly overwhelmed by the replies I’ve had from you ladies

You’ve all given me such s boost

Barb XX

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Oh Barb, You are like so many on here, trying to be strong and having to deal with terrible pain and anxiety. You are obviously someone who has been in control of their life. That is hard to lose on its own. Also this wedding must be causing you so much pressure. I remember, the last time I had cancer my older daughter was getting married, and just trying to look good and happy was such a strain in itself. I suspect after the wedding you will feel a bit better as you will be more relaxed. You are a beautiful woman, who obviously set very high standards. You need to be kind to yourself and give yourself a break. There WILL be something to control your pain, I just know it. You have brought such encouragement to us all, let us send you lots of love. Glad your are seeing your oncologist tomorrow. Good luck. Ruth xx

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Thank you Ruth

Sweet of you to respond so kindly

I’ll pick up soon because you girls have understood how I’m feeling and it isn’t me...blasted drugs!!!

Barb xx

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Only just reading your posts from earlier today , Barb , but feel for you and how rubbish you are feeling especially at this time ...I hope you have managed to eat a bit more as you need more energy if getting out and about ... . As the others have said here , do let your onc know tomorrow exactly how you are feeling and jot down everything you have said here as it is easy to forget when you are in front of her ...I know you normally prefer to go alone to your appointments , but is there someone who could go with you tomorrow ? Also do let her know what meds you have been taking and how recent you came off them as they could be linked as to how unwell you are feeling eg metformin can have a rare side affect , lactic acidosis and only a doctor will be able to tell you if there could be a link , or coming off the pain killers ...what are the potential side effects ?

I know you don’t want to miss the horse trials in 4 days time , but if you are weak and dizzy focus on getting well for Miranda’s wedding ... I’m sure everyone would understand . Take care and hope you feel better in the next few days 😘

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Thank you for that advice...I’ll do that

Barb xx

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One other idea about food. In the US we have yummy ice cream mixes called frappes or milk shakes. Plenty of calories and they go down easily. I like a coffee frappe. I’ve brought them to friends who are recovering from one thing or another and they all find it works.

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I see a psychiatric nurse practitioner to discuss all my feelings, meds, family, work etc. She has a private practice and it is included in my health care. She spends 45 minutes helping me find solutions when I need her. It’s a different perspective than my oncologist.

You are stronger than you think. Thanks for trusting us to help you. We love you.

You are here for us. We are here for you. BIG HUGS.

Reenie

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Hi Reenie

Thank you for your response

Just knowing I’m not alone in this nightmare is so comforting

It’s that feeling of hopelessness and feeling of being of no use in the world that is frightening at the moment

I’m telling myself it’s the drug withdrawal and not eating that’s making me feel like this...it’s not the real me

I’m going to put some make up on now and try to look human!!

Barb xx

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Barb, I’m so sorry I haven’t seen your post until now. You are definitely going through withdrawal. It does take time to get accustomed to the morphine patch. Please don’t change those kind of medications, either going off or on without talking to your docs. Overdosing or underdosing can both be problems and ending up in the hospital because of them is one more complication you definitely don’t need.

Being a good patient...it is something we all want to be. But you know what? Being a good patient involves telling our docs when we feel as bad as you do. They can’t do their job if you don’t. You are important to them. If you ended it all they would feel like failures because they are trying hard to make your life as good as possible. So please, tell them!

And we would all feel horrible too. You are important to us. I wish I wasn’t so far away. You need someone to give you real hugs and a shoulder to cry on. Lots of virtual hugs. Elaine

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What a lovely reply

Thank you Elaine

Barb xx

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Hi Barb

Please try and take it really easy for a day or two. Lounge around and try and watch something funny and uplifting on a TV. Then when the sun comes out again later, try and go for a gentle stroll and treat yourself to more buns.

C and its treatment is so very cruel. I’ve woken up with a painful mouth ulcer ....

I so hope you feel better soon.

I don’t post often but read this forum most days.

I think we are all incredibly brave ladies. Yes, I’ve learnt to praise myself...

Take care, beautiful lady.

Love Jo xx

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Thank you Jo

You’re so right

We are brave ladies and deserve to be happy

Someone said to me once when I was sad that I could live a long time (who knows) and did I want to spend that time feeling sad?

Obviously not but it’s not that easy is it when you have to forfeit all the things you enjoyed doing and be in discomfort

Hope all going well with your treatment

Barb xx

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Barb - Lots of healing vibes your way! I highly recommend detoxing all those drugs out. I know juicing Is hard - but I find it cleansing and gives the body a nice energy jolt. Maybe some near by friends can help or in the states we have plenty of juicing shops - even to buy pressed juice from the stores. Green and Clean is my motto and if it doesn’t have healing properties don’t waste your time or effort. Also My Naturpathic always reminds me your body is healing when you rest so don’t feel bad resting.... your body needs it. I too am always motivated by your words so - please know we’re all here for you! Keep the faith - don’t let the dis...ease take over. Your the winner here and you deserve to feel good! Cheers 🙏

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Hi there

I’ve not been juicing this past week so I’m glad you’ve reminded me...I only use basic things like carrot apple cucumber celery and ginger but it’s nice...perhaps my juices were helping more than I knew!!

I’m having a reflexology session this morning then my oncologist this afternoon...the lady who I see for reflexology is marvellous...she’s a bit eccentric and does lots of other things...she’s a medium and a minister and believes in the body’s energies and stuff...she always makes me feel better plus she spends as long as she thinks is needed so I’m sometimes there for hours!

Barb XX

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I’m so sorry to hear this Barb. I wish I could come around and give you a hug. When you hurt, we hurt. I guess it’s because we are all family now. Is Fentanyl patch same as morphine patch? As to what you can eat or drink, can you ask your onc about Prosure? It’s made by Abbott and is formulated for cancer patients. It’s a powdered drink which you take like a smoothie but it’s got all the vitamins and minerals we need. I believe it can be used as a meal replacement. Sending you ❤️ across continents.

Maria

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Hi Maria

(My middle name is Marie and I love it)

I think Fentanyl is very much like the morphine patch with similar side effects...I’m not going down that road again!!.. it’s scary the effects of drugs that can have on you...at least with s pill you know when it will wear off...I thought the patches sounded like an answer to my prayers as I could have continuous pain relief without having to take pills regularly...at least I’ve tried!!

I love what you said about this site being like a family...how true...I feel like I have a safety net when I’m alone with my negative thoughts

Thank you for your kindness

Barb xx

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Offering my prayers for you Barb. When all is dark and you are feeling hopeless, just call on God. He will hear you and uplift you.

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I’m not sure if he will as I’m a lapsed Catholic and there’s a measure of guilt here

Barb xx

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Barb ... we are all sinful by nature, quit beating yourself up! that's why Jesus had to die for our sins and shed His blood, and now we have HIS righteousness! WHY? because we could never be righteous without HIM! It's ALL ABOUT HIM and the GIFT of SALVATION! Jesus loves you JUST AS YOU ARE! Just say, I am the righteousness of God IN Christ Jesus! The phrase comes from 2 Corinthians 5:21.

He made Him who knew no sin to be sin on our behalf, so that we might become the righteousness of God in Him. <3

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He forgives everyone Barb. I’m not a lapsed Catholic but took Jesus for granted. But when I was (and sometimes still am) in a dark place, I called on Him and somehow found peace. I’m neither holy nor saintly but I believe in His goodness and mercy. Hope you are feeling better and are slowly getting back to the Barb we know and love.

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Hi Barb,

This does not sound like you at all. It seems that it could be the morphine withdrawal and hopefully it will pass in a few days.

Regarding increasing your energy, I have been taking Floradix (You can get it on Amazon) for a while now and it really helps.

All the best,

Eva

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I am deeply sorry that you are on pain. I remember past year during this time going thru horrible pain. Have you try strong tea made at home? I buy ginger root and cinnamon stick and tumeric root. It helps me with inflammation and nausea. It takes time but I have notice my muscle in my back doesn't hurt like before. My skin is extremely tie due to implants n cause me pain in my back and front. The plastic surgeon said that my muscles are so stretching due to the size of the implants that cause inflammation and pain in my muscles. I am removing them on October for small size but I have dealing with this pain for the last 2 years. I use lidocaine 5% patch bc I dont like oxycodone pills make me feel sick. They are not so strong but they help relief the pain a little bit.

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Hi

From all the various pills I’ve tried...I agree that ocycodone is the best but still do have side effects...I’m just glad I don’t have to work although I loved my job I couldn’t do it now

Barb XX

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Barb, it sounds like the patches are not for you right now. Do you have a Palliative Care doc or someone who can know and look at your whole experience and needs and help you where you find yourself right now. Your answer/s will likely not be in one thing or place but likely several and only you can find it and put something together. Dont look back the way ahead doesn't often look and feel like what we've always done and was always comfortable. I wish l wasn't across an ocean from you and could really get to know you and share. As long as you are still here you can do this, do the next loving thing for yourself. I know you want to be there for Miranda's wedding. I'm sure your pain is treatable and that you ca n get thru pain and fear. I took a little holiday off my letrozole and Ibrance and had so much less side effects an pain, I'm starting back on meds now with renewed focus and going forward. Please don't give up. Love, Mary.

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Hi mary

I think with the pain thing it’s the fear of when it gets worse..which will happen as the disease progresses and I can’t bear the thought of being inactive or at worst housebound

I know it sounds negative but I’m being realistic

Barb xx

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I totally get it.

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We all think of this scenario at some point especially when we are due for our blood tests, scans and get less than favorable results. But when I think of my husband and daughters, somehow I get the urge to fight this dreadful disease.

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Hi Barbara some of what your dealing with could be caused by stress . You have been worrying about your daughters wedding so much . Try to find things to do that get your mind off anything that stress you. Try to think positive keep repeating I am strong I feel great I am Beautiful Relax relax 5 deep breaths. If you sit and keep repeating things and truly concentrate on what your saying it leaves no room for stressful thoughts. Please do talk to your medical team tell them everything don't hold back they need every bit of info to be able to help you. You can get through this you are wonderful God Bless you!!

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Thank you

Barb xx

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Oh, Barb, All that you have written sounds so familiar -- this dam cancer is so awful to live with! And even when we are doing well, there are challenges. And I sure hear you that not doing equine things isn't like you at all! But when we are in pain, fun seems impossible! I don't know how I missed your note yesterday and I am sorry for that. I also am hoping that your onc will have good ideas for you, and your reflexologist sounds wonderful in so many ways. Since that is helpful to you, you might appreciate CDs/iPod downloads by a woman named Belleruth Naparstek, who has studied the mind body connection extensively and has a very soothing voice too. Here in the US, I get them from a website called healthjourneys (I can never remember if it is .com or .org) There may be a souce closer to you. I have her Cancer set and a Surgery set and the latter was helpful to the point that before using it my blood pressure used to spike whenever I was getting surgery or any procedure that required being put out. Once using it, my blood pressure become normal to on the lowish side when I was in for a procedure. I had trouble withdrawing from a pain med after back surgery (not cancer related) early in my time with bone mets. I don't remember which med it was, and I was really surprised that I had withdrawal symptoms after a relatively short time on it. This may sound wacky, but when you mentioned not being able to lower the dose since you are on patches, it occured to me that you probably could cut a bit off a patch and lower the dose that way, lol. Don't know if your onc would agree. I hope you feel better soon and that you feel more like yourself and not so yukky in so many ways! Keep us posted as you can, but if you need to stay off line for awhile, I suspect most of us will understand that. Sending gentle cyberhugs and love and prayers your way........

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Oh thank you

In the instructions with the patches,.its not allowed to cut the patches as the medication would leak out

I’ll see what the oncologist says this afternoon

Barb xx

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Barb, my Mom was dx with colon cancer last April, she couldn't eat and was losing weight rapidly, from 146 to 120 within 2 weeks. Dr. wouldn't do chemo until she gained. Dr. gave her Megace and it works great. Hope things get better. Also my husband is fighting lung cancer and Dr. told him to take one regular strength Tylenol with one Claritin for pain. He said it works better than morphine. Prayers your way...

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I e tried various combinations...the paracetamol and Claritin aren’t strong enough for me I’m afraid...wish they were but I need stronger meds

Barb xx

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My cancer center in Brooklyn is supposed to be one of the best. They and the breast cancer center have a no opiate policy. Giving pain meds (opiods) or even patches is very hard to get. They try shots and other methods first (they have a pain management clinic there but no opiods). If one has a surgical procedure, they get a very few. As your body gets used to them, you start to need a higher dose to "mask" the pain. And then if you stop, you feel the pain more acutely. It's a double-edged sword. Even their hospital did not want to give me pain meds after they did an invasive procedure of cutting tunnels out of my upper thigh. It was so so painful. All the doc would give me is Tylenol with codeine and that did not nothing. I practically had to beg and I only needed them during the recovery process. Luckily, I don't have pain from my cancer. It has to be awful to live like that. Maybe try spacing the pills (if you plan to go back on them) for longer periods.) But my cancer center prides itself on not prescribing opiates (I have no idea why). Many people who originally needed them for pain your body becomes used to them. They say that pain meds withdrawal makes you want to feel like you are dying, it doesn't cause it but it's the withdrawal from them and then of course you feel the intensity of pain so much more. Even pain management clinics in Brooklyn, NY very few of them will prescribe any type of opiate.

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I think I’m the UK they just dish them out to all and sundry which is inappropriate as many conditions don’t need drugs like these

Barb XX

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They are much stricter in NY. Even pain management clinics have signs up that they do not prescribe opiods. Even if you have a prescription, unless its a regular pharmacy that you go to they will tell you that "they are out of stock." I am thankful I don't need them. My friend who had stage iii recurrence of breast cancer was given strong meds, oxycodone, after her double mastectomy. She said she did not like the way they made her feel, groggy and out of it. She had her husband's adult children over for dinner and a few hours later, when she looked into her medicine cabinet, her medication was stolen. She strongly suspected her son's adult son. A woman I met in the first cancer center I went to told me she was given oxycodone after a double mastectomy but that she never even got to take it because her sister stole them. Sad. That is because we have loads of adults and kids that are now addicted to them. A majority of them started on them due to an accident of some kind and then became addicted but now a lot of doctors don't want to deal with the govt. looking over their back, so they would rather make a patient suffer than give adequate pain relief.

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This is so scary...I must say ocycodone does help with pain but at a price I fear

Barb xx

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you might want to try alternating Tylenol and aspirin. or Tylenol and ibuprophin. At the hospital we give Tylenol then 2 hours later give ibuprophin and just rotate them - Because they are 2 different types of drugs you can do that and our surgery patients are using it instead of the stronger stuff.

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sounds like you just started using morphine - you can't be going through withdrawal unless you have been dependent on opioids for some time - Short term use shouldn't be a problem. So sorry you are so sick - sending hugs

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I wondered about that however I’ve been taking other opioids for about s year which may be the reason I.e cocodamol and ocycodone

Barb xx

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Just curious. Were you taking the opiate pain meds every day or just on days when the pain was too unbearable. A year is a long time so of course your body gets used to it. I hope they can find another method to help control your pain issues.

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Me too!!

Hate opioid medication

Barb XX

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The problem is that eventually your body gets used to a certain dosage and then you need a higher and higher dose. I think stopping the morphine patch abruptly was probably not the thing to do. I had been on antidepressants years back and after three months I hated them, they made me feel so numb and I told the psychiatrist I wanted off them. So he gave me two other kinds of medication (one I think was for blood pressure) and another pill to wean off them. I remember a coworker at my last job that was on antidepressants. She decided on her own to just stop taking them. She was at work when she started feeling weird and getting nervous. She called her doctor and he was furious that she just abruptly stopped without getting his advice. She had to leave work and go to him immediately. These are heavy duty drugs so always speak to your doctor if you want to try and wean off for a bit. I hope you feel better soon, but I would guess that the withdrawal is making you so sad. It's not a pleasant process but it does pass.

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Yes I’m a bad girlfriend just stopping them but that’s me...I ought to know better being a health professional myself

Hopefully I’m over the worst

Barb xx

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2 aspirin every 4 hours; called aspirin therapy and mama's ortho had put her on this regimen for disintegrating discs in her neck; hope I don't sound like a broken record! There is also something to the claritin as well, as I've been hearing people talk about it for over 7 years now. Sometimes I feel lower than dirt and I will remember that I only slept 3 or 4 hours; lack of sleep with this disease is a horrible combination! when I get down in the dumps, I listen to good preaching and praise music, it will lift you up, I promise! Do you get Trinity Broadcasting Network over there? Freeview channel 65 I read, but have no way to verify that. turn it on and leave it on all day with the Word going out in your house also makes a huge difference in the peace level in your house. God bless you and heal you in Jesus name, amen!

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Interesting about aspirin

I do take a Claritin as I read it was good for bone pain

Thanks

Barb xx

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What dose aspirin was she taking?

Barb xx

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325 mg. ... regular aspirin. I take 3 if I'm hurting really bad and it knocks the pain out. I stay under 4,000 mg. per day. <3 xo God bless you!

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Thanks I’ll try the aspirin

Barb xx

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I thank God aspirin works, sometimes it's the simple things! Try 3 then 2 every 4 hours. I may have told you but aspirin washes out of the body completely and doesn't accumulate. <3

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Aspirin is a miracle drug for many things...I think it’s overlooked as old fashioned ..will give it a go

Barb XX

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The 4000 mg rule is for Tylenol. Not aspirin

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I read that about aspirin as well.

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Yes you are correct....both Tylenol and Aspirin have a daily dose limit of 4000mg. I would caution though that taking that dose of Aspirin daily for an extended period will likely get you in trouble with GI issues and your kidneys and liver may be compromised too.

Sandra

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Barb, I am sending you lots of hugs and happy vibes. This cancer journey gets us all down from time to time even without withdrawal side effects, so you are getting a double dose. Just know that we all have you in our hearts and know that this will pass and you will be your upbeat self again soon. Blessings, Hannah

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Hi Barb, I am so sorry to hear what you are going through. I am actually going through the very same. I was on fentanyl patch however, wondering if morphine might be too much. I was on it orally last year and pain management doc switched me to fentanyl patch with oral oxycodone for break through pain. I was in a lot of bone mets pain since last summer. After taxol, my bone mets resolved and so last Thursday I asked to start coming of fentanyl patch. I was on 25mcg patch every 36 hours. On Thursday we went down to 12 mcg and I am experiencing every single withdrawal Effect you mention. One tip though pain mgmt gave me and it works! Supplement with oral oxycodone when feeling poorly from withdrawal. She said each 12mcg of fentanyl is equivalent to 5 tabs of 5 mgms of oxy. With that in mind, I am supplementing with 1-2 tabs per day. It definitely gets me past the physical and mental withdrawal effects. The plan is to stay on 12 mcg for a couple of weeks and then come off or can go down one more step if needed. Then start to wean off the oral oxy. I think it is a gentle approach given the length of time I was on these drugs. I can say that with each passing day the withdrawal symptoms are lessening. If you are still in pain I might suggest you speak with pain management. I think the world of oncologists but pain mgmt drugs isn’t exactly their area of specialty. Are you willing to try fentanyl patch instead of morphine? Women in my support group seem to tolerate it just fine. I know we are all different but I know all too well the physical pain you are in and Tylenol of NSAIDs alone just won’t do the trick. Please don’t give up and stay with it...you will find the right combination of drugs for your pain!

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I have a box of 5g oxycodone and I’ve taken a few in the last few days and they help

It’s horrible isn’t it?

At the moment I’m not sure about fentanyl as tbh the low dose morphine patch was too weak and the higher dose made me feel wretched

Thanks for your lovely reply

Barb xx

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I truly feel for you! It is an awful feeling to have so little control over one’s body. I know what you mean about morphine. I was on 15 mgm oral last summer and was somulent the entire day. For me fentanyl was a dream. I was able to work and drive and do what I wanted. I understand your fear of opioids in general. Maybe feel better first from morphine withdrawal and then reconsider your options. Our current state of being definitely influences our decisions. I wish you a good discussion with your onc and sending big hugs your way!

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Yes anything is worth considering

Thank you for the info

Barb xx

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I am on the Fentanyl also. At first I couldn’t do anything but it was that, starting Ibrance, radiation, and back pain all at once. When everything got sorted out, I was fine on the Fentynal. I drive, sew(in the beginning my hands shook), do anything and everything. It’s worth asking is the sedative affects would be less.

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I should also add that we used multi-modality approach to my pain which definitely included very shirt and targeted bursts of radiation. I had it last summer to my ribs and right hip and this past spring to my lower spine. It also helped. Each area had daily doses for one week.

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That’s one thing I’m going to ask about today...palliative radiation although one or two ladies on here weren’t impressed

Barb XX

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Never go by what others think or felt. We are all different in what works for pain and what doesn't. It may work for you and you won't know if you don't give a try.

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So true!!

Barb xx

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I was told radiation for pain works only if your lesions are affecting a nerve. So I had T 10 and 12 radiated but my ribs and lower back lesions weren’t candidates. But it helped my back pain tremendously. I hope you qualify for some at least!

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I asked my oncologist about radiation and she wants a new scan then will do if she thinks it will help...glad you had s good response

Barb xx

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I hope you have a few spots it can help. You will feel much better if they can. I have a spot on my ribs that always bothers me but they said there weren’t any places there that radiation would improve. That was disappointing but at least my sharpest pain was improved.

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Sending prayers for physical and spiritual healing! 🙏🏻💕

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Barb,

I’m so sorry you are feeling so much pain. Sending you prayers and positive energy that your appointment leads to a resolution where you feel better and more like yourself very soon. Huge hug!

Tami

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Oh Tami thank you

Barb xx

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Hi Barb, ever tried a device call TENS? It releases micro electric current to muscle n nerve which proven can reduce pain. Worth trying as it's not expensive. Hope you'll be well soon. Take care!

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I did try a tens many years ago but don’t think it helped..however it is worth having another go...anything is better than drugs

Thank you

Barb xx

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Hi Barb, my mom is using Paingone for her muscles n bone ache. It really works! You can buy from amazon. Less than $55 including shipping. No electricity needed. You may check their website paingone.com. Hope this helps

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I’ve seen this advertised but was a bit sceptical

Might give it a go

Thank you

Barb xx

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Hi Barb, let me know the outcome

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Really hope it can help you. Take care

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Oh Barb, I hate that you are feeling so bad and so down but I honestly get it. I try not to think about ending it but when it gets to hard to manage it then I would make that decision. I see my doctor on Friday and if the pain hasn't subsided in my back he is going to send me to a radiation oncologist. I have been able to control the pain with a half of a Vicodin and a Lidocaine patch. Going to go without the next few days to see what the pain really feels like without the relief things I have been using.

I have to be out of town for the next three weeks on assignment and am really not looking forward to it. Praying that God will give me the strength and stamina to get through it. My home is my safe place and while I still go out and do things my my family and friends, I love coming home and just being still.

Hang in there my friend. If it helps you are not alone and I will be praying for you,.

Kim

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Hi Kim

Pain is the worst thing as you obviously can relate to

I worked with severe pain before the mbc diagnosis...looking back I don’t know how I did it...only when the fracture happened did I accept I had to retire...I admire your courage working as you do and I hope something can be done for you

I’m going to ask about radiation for pain

Barb xx

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You can have withdrawals from the patch even if you had it for a short time. You may want to put one on and then ask your doctor for lower dosage to wean off of. I tried to lower my dose of my oral hydromorphone cont and it was awful, dizzy, flu like symptoms and the shakes.

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I thought you had been quiet Barb.

I’m so sorry you have been feeling so blue. Everything has got on top of you. Sometimes the pain that we can normally cope with, gets a hold and takes over.

I don’t I can add any other advice than all the amazing replies you have had. Don’t let the pain get the better of you. It often takes some re-adjusting to get the right meds and doseages. I would just check about a Tens as I think you aren’t meant to use them with Mets.

My only other suggestion is relaxation or shout and scream - both work for me (at different tines).

Please don’t give up, you are So important to everyone here.

Stay strong lovely lady xxx

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What a lovely reply

Thank you

Barb xx

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Hi barb

Been thinking about you all day hope your feeling a bit brighter today keep strong . My daughter got married in may and I thought I was going to let her down and cried for days before but was so blessed to be there for her big day. You will make her proud and will have a fab day . Cant wait to see you all dressed up you always so glam on your post.

Chin up xx

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At least I know it’s not just me feeling like this about weddings

Thanks for this..means s lot

Barb xx

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Barb, I am so sorry you are feeling poorly probably more than likely the withdrawal from the morphine. I wish you were able to purchase CBD for pain much safer than Morphine and very affective for pain management.

I hope you feel better in a few days my heart goes out to you. It feels so bad to hit rock bottom. Praying for you Mimi

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Barb,

You are one of the first I connected with on here and a pillar of our group. I am so sorry you are feeling like this. Pain is debilitating- not just physically but mentally and emotionally. Plus not having a solution that works is enough to push anyone over the edge. I feel your pain in your words. Depression comes from that and withdrawal and feeling hopeless for an answer.

Then if there is depletion of nutrition on top it’s easy to understand all of it. I am glad you are seeing the dr. Hopefully you will find relief.

Radiation helped with my thoracic spine pain. I have been offered it for rib pain but haven’t done it yet. I have many bone Mets and I will use it if pain is too much.

Barb, I wish you were closer than across an ocean- I would give you hugs and comfort care- an ocean does not stop me from sending them to you through cyberspace. You are so loved here. Please let us know how you made out.

🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻(They matter even for us displaced Catholics-God hears our heart)

❤️❤️❤️❤️❤️😘😘😘😘😘

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Frances what a beautiful post and I think Barb was my first connection here too. I hope she was able to get some answers after her appointment today. Off topic but did you start your Xeloda and how is it going s far?

Sandra

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Hi Sandra

Yes on day 3. So far ok but I take zofran and Zantac prior to xeloda. I have hard time eating in morning when I am not hungry. Best I can manage is 9 hour interval: the pharmacist told me 10-12. So far it’s ok. Thank you Sandra for remembering and asking♥️♥️♥️

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Thanks for the update Frances. Fingers crossed that it will be easy for you and munch away at those bugger cells. Zofran as you know can be very constipating so make sure you get ahead of that side effect. Another option is Maxeran which doesn't have the same effect on bowels but works really well for most people. Just thoughts as I know you already are on top of all this. Thanks for updating me.

Sandra

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So glad Xeloda has been ok!!!

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Thank you for a lovely post...you ladies are the only people who totally understand

I’m getting an iron infusion next week as I’m anaemic again...a scan in a month to see if lower back pain is from mets...if so then I can have some palliative radiotherapy...also the pain consultant is going to try a hydrocortisone injection into the epidural space where the fracture is at T5

Feel a bit better now there’s a sort of plan

I’ve decided not to go to Burghley horse trials on Saturday...first one I’ve missed in 30 years so gutted but no point driving all that way and feel tired and it’s an expensive day out as well as strenuous walking the XC course

I’m going to be positive and plan on going next year!!

Barb XX

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Hi Barb: You have been on my mind & in my prayers & I was going to connect with you today to find out how you are doing. Thank you for sending us an update! I’m glad you are feeling a bit better. Still praying for good results and pain relief ❤️❤️❤️🙏🙏🙏❤️❤️❤️

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How are you Barb?

I’m glad your onc is on top of the back pain and I think your decision to rest at the weekend is the right one ... there will be other horse trials in the future , but only one daughter’s wedding ...which you need to rest up for !

Get a funny movie ( The Hustle , I saw recently will make you laugh and is now available to rent or buy ) ...enjoy dark chocolate 🍫 and lots of different nuts 🥜 for the extra iron and stay positive x 🤗

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So glad you have a new plan and a more hopeful outlook!

Love, Marianne

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Barb

I am glad that there is a plan in place. I know it is difficult to say no to events we enjoy; sometimes we just have to put us first and do what’s best for us. I hope you can manage to get some nutrition

Into your body also. You are in my thoughts and prayers; sending hugs and ♥️♥️.

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I am so sorry for what you are going through! Are you taking Ibrance or have you been on chemo. I am trying to avoid the chemo route, but only God knows what going to happen with this crazy disease. I send my prayers for all of us! Hang in and enjoy the sunshine! I wish I could offer more! ❤️❤️

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Hi there

Yes I’m on Ibrance letrazole and denosumab...there’s no way am I having chemo and I’ve told my oncologist

Barb xx

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Hi Barbara haven't heard anything from you in 4 days .Hoping all is well!!! Please let us know how you are doing.

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Hi there

I’m having an iron infusion Monday as very anaemic...I’m off to the stables now and going to get on my horse even for just a little ride...if I don’t then I think I’ll lose my nerve...just me!!!.. it’s easier to stay at home and feel sorry for myself

Having nails done Tuesday and trying to get in the mood for Miranda’s wedding but it’s hard☹️ Tried my hat on yesterday and I don’t like it now!!’ It’ll have to do though...I just don’t look well but it’s amazing what some slap can do!!

Thank you for thinking of me

Barb xx

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Oh Barb so sorry you are still not feeling well . Hopefully the iron infusion will help. Enjoy your ride. I have a very dear friend here that has horses. She recently had her horse of many years pass away. She has been training a new horse for trail riding. Thought he was doing well but while on a ride got spooked when a branch caught between his back legs . Before she could regain control it threw her off. Ended up in Pittsburgh hospital with a smashed hip socket. She is recovering very well but feels she may have to send the horse to a professional trainer before she will get back on him. I guess at 60 some years of age we don't bounce back as fast anymore. She loves her horses like you love yours says they have gotten her through a lot of bad times. Hope yours do the same for you.

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Oh he does...I tell him everything and sometimes cry against his neck and I know he understands (now you ladies will think I’m bonkers!!!).. I had a canter today which I wasn’t planning but Bugsy had other ideas!!

Sorry you’re friend is suffering with her fall...I had a horrendous fall a few years back and lucky to be alive as Bugsy landed on top of me in a deep dyke...was awful...not his fault but I had to be brave to ride again...I wear a gilet which is attached to my saddle so if I come off it inflates before I hit the ground!!.. makes me feel protected

Thanks for thinking of me

Barb xx

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I will have to tell her about the gilet . Maybe that would help her feel safer also . Thanks

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