I was so glad to see 2023 come to an end, but unfortunately, my transition into the new year has not been much better. I think I’ll make a couple of separate posts, so this does not become convoluted, but my most immediate need is finding some resolution for the increasing pain I am having. Actually, I’ve been very lucky for the last six years. I have not had to deal with a huge amount of pain at all but over the last six months of 2023. I started to have what I called recurring muscle flareup in my right groin, right inner thigh.
A series of hip x-rays, lower back MRI and trunk CT scan at Xmas did not show anything significant with my bones and nerves to cause pain but it persists. All this time Advil had been working quite well for me.
Last week I developed a new area of muscle pain, in my buttocks(!) deep around the hip sockets. Hot bath while I’m in it or Advil was literally all that was helping. I decided to reach out to the doctors office and they said they don’t want me taking that much Advil , so they prescribed me tramadol. The first pill I took at night and that was ok, I slept well but the second pill I took 11 hours later and I ended up spending the whole day, 12 hours after that with lightheadedness, nausea and vomiting ! I will not be taking that again!
Now they’ve given me a muscle relaxant to try , which although I am uncomfortable right now, I am holding off until after work with my client this afternoon, just in case I have another reaction.
I know there’s plenty of women here who have pain so I am curious if there are other alternatives that are not opioids that have worked successfully for you? (Oh, and my liver mets have increased so I think the codeine things are not good for that.)
Probably this week I will start on Xeloda
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Dear 13plus: Sorry to hear of your suffering! I don’t like taking narcotic medication either. I have found help from OTC Tylenol & physical therapy & massage. But that may not be enough for you. I use lidocaine topically as needed.
Thank you, yes I have to admit to feeeling pretty miserable. It's interferring with my ability to work, and do anything much now, and I have a lot of important things to take care of (!) but have no focus in this state. It's very frustrating. Tylenol is not suggested for me due to the liver mets. I became sensitive to massage a while ago with the bone mets (or maybe it was just the acupuncture I had at the same time?). I stretch, carefully, but I cannot overstretch. They're unhappy muscles, it's not a type pf ache I've ever experienced before
Yes I've been considering getting a PT to guide me back to more strength. Ironically recovery and fitness is the focus of my work but I'm not practicing what I preach! 🥴
Best to check with your pharmacist first ( often across interactions etc) but complementary Boswellia, Grapeseed ? Claratyne (off label) Curcumin, Voltarin , (short breaks) min codeine, min diazapam at night, relaxant, muscles etc , Melatonin for sleep, ginger, most fresh herbs. Diet and exercise, physiotherapist. Aim to use the absolute min analgesics, opioids. Get a pill cutter. CBD works for many, very commonly taken during cancer treatments.
Lyrica prescribed here by new public, private Oncologist but wont take as strong pharmaceuticals averse for all the side effects, possible addictions.
Some, most? antidepressants have side effects, addictive or dependancy.
I talked to the pharmacist tonight. Turns out that drug also makes you dizzy! ("Not as dizzy as the Tramadol"). Well I spent the entire day on the couch doing nothing, unless I was up to vomit, and couldn't eat anything at all either. It was totally miserable- oh except no pain! But I cannot stand that whole head effect of the opiods, always been sensitive to them. So very wary to try the relaxant too. All these drugs are pretty awful with side effects. I can't take codiene (liver mets), usually always eat very healthily/clean foods, and teach fitness - another reason why I'm so frustrated to be feeling like this Sorry, feeling pretty low at the moment. Sometimes I use a great anti-inflammatory cream but it only helps a bit
I have constant pain. Nerve pain and muscle pain. I takes Pregabalin and oxycodone. I still get break through pain. I am getting a shot in my spine to eliminate the pain. We’ll see how that plays out. I hav been in pain for years. I have heating pads everywhere. Best to find a solution for you.
Thank you Reenie, I’m sorry to hear you’ve been suffering like that for years. I hope the spinal shot helps you considerably.
The tramadol they gave me is the lightest of all the opioids. There’s no way I could handle OxyContin . Last time I took something like that was about 10 years ago and I reacted horribly, even though I’d had it previously and it was ok. It’s like something switched in my system and I can’t process it now
I have been up and down with pain. I completely get why you would be reluctant to take anything orally if you are getting wicked side effects.
Consider limiting oral medication to sleeping. In the day time try to stick to topical. I rotate as my body gets used to something I move on … my rotation is THC cooling cream, voltaran, “that stuff for Pain” Amazon Canada Carrie’s it), Extra Strength Pain Release by Saje, and Absorbing Junior extra strength.
My meds are T3’s (but I was asked to not take those anymore - liver toxicity), Naproxen, or Hydromorphine depending on how much pain I am in. I was offered a fentanyl patch but said I am not ready for that.
I also use hot baths (keep your feet out of the water on Xeloda), heat pads and a heated mattress cover always on so if you’re sharing a bed with someone who might not want heat get dual controls. Try a different massage therapist without acupuncture or maybe just acupuncture alone to see if separately they could do you some good.
Pain is debilitating and depressing so try to stay on top of it.
SoulJourney Thank you so much for your many tips Tammie, especially the no hot water in the feet for Xeloda. I love hot showers, this is going to be another challenge for me
I was thinking about using some of the drugs only at night (though today I’m travelling into the city to catch up with a visiting friend so I’m going to go back to the Advil just to see me through that visit) . I remembered I have some so I tried Frackinsense on my back and thigh last night. I think it did def seem to take the edge off! I’ll look into getting a heat pad
The hard part for me is if I can’t control the pain I’ll have to stop working. My clients will be in for a big shock, but that’s another matter.
Thanks again, and all the best to you too as you deal with this
Hi - just catching up! It has been a rough few days
Frankincense is another good one I forgot about. I read that applying it topically to a tumour can reduce it. I know there has not been any double blind studies done to that effect but my feelings about alternative therapies is go for it unless there is a contraindication or the oncologist specifically says no that will hurt you. So true or not if we might be doing something good and we better then great!
I hope that your pain is improving! staying as normal - typical - to your regular routine is a good quality of life thing, especially if you love your work and it gives you positive energy!
Happy thoughts and positive vibes coming your way!
Thank you I DID feel that the Frankensense took the edge off. Sunday night I took the muscle relaxant before bed and slept well. Monday I was a bit better and then after that I've ended up being fine! The pain just dissipated. Feeling grounded again now. I'm sorry to hear you've had a rough couple of days ... hope you're feeling better by now too!
I know pain is very difficult to live with. I’ve had shoulder since Mat 2023. Finally in November I had radiation treatment to my shoulders. It helped some. Maybe you should ask about getting it to your painful area. I have Mets in my shoulder area. They also didn’t want me taking Advil and I was given tramadil. It kept me awake too. I wish you the best. Hope you find relief of pain
hank you for your good wishes. I think rads for the sacrum is not off the table but the doctor wants me to start the xeloda asap for my liver. I think I couldn't do both at the same time. Wishing the best for you too
Have you ever considered ice baths? Pro athletes have used them for decades and Scandinavians for centuries……the thinking is so much of pain comes from inflammation and ice reduces that. I live near Seattle on Lake Washington and I only need a few minutes in the lake for relief…….it is about 45 degrees……doesn’t work in the summer 6 months. After 3-4 hours, the cancer pain reduction doesn’t work as well but maybe a half of a Advil/Tylenol pill m, 4 to 6 hours apart, can get you through the rest of the day. Many Docs do’t like Advil/Tylenol for pain but if you can “ make it”on 2 split half’s of a pill daily, might work. Frequent blood tests to monitor liver and kidney function are part of my ongoing chemo treatments so I get them every 3 weeks.
Like the Wim Hoff Method too I guess if I were so chilled the cold and numbness would overtake the pain lol. I know many swear by it and I'm glad it enables you to have less painkiller. That's great! Personally I've always had a very low tolerance for cold. But my dad always finished his hot shower with a pure cold blast! Very rarely I will do it and it does make you feel alive. Perhaps I could experiment with the shower again. Then again, it's interesting because my hips can be aching SO badly and the moment they sink into the hot bath it's like the pain melts away. Of course as soon as get out it's not as bad as before I got in but that ache is immediately present again.
So I was taking the advil about every 5/6 hrs and it wasn't working so well this time around, which is why I asked for something else. So 1/2 pill is a nice idea but I do need something stronger now to feel "normal" and be able to move decently. Today and yesterday I just endured with nothing. It's not easy but I prefer this to those awful opiates. I will try the muscle relaxant tonight to sleep
hello 13 plus! Your story sounds familiar. I went through nearly three years of relative normalcy after the initial tumor in my iliac was radiated and I was put on IBrance and anastrozole. Pain and joint discomfort was handled through a naproxen (375) and daily Claritin (antihistamine that prevents the histamines from cancer cells from causing bone pain).
6months ago, I started to notice back pain and spasms. I was offered Flexaril and gabapentin for that…and progressively more gabapentin as the pain increased . I play golf so it was easy to see the differences in my game, walking endurance, etc.
In September I had enough and started to knock on doors…asked my ONC to get the scans earlier. It showed only intense uptake in my original tumor on the iliac as well as some new spots but no real progression.
I tried radiation on the new spots on the sacrum and L5 but I’ve had nothing but pain since early December.
Hah! Since then it’s what you have described…I know you have to avoid Tylenol but I take Tylenol, naproxen and 3 gabapentin, three times a day. It barely helps until the afternoon when I have built up some meds in my body. Unfortunately this means I spend a lot of time sitting and this leads to other degradation of the muscles and bones.
I’m going to see a Palliative doctor next week. We have medical marijuana in NH so I may ask about that. But apart from another possibility to re-radiate the original tumor, there may be spinal shots or another mix of meds…but like you, I want to avoid opioids.
This is what helps. Naproxen 3 times a day. (I also use Tylenol). Gabapentin to address the nerve pain down my legs. Flexoril at night to sleep and relax the muscles. If my hips hurt a lot, I rub Voltarin there to give an extra boost of anti inflammatory med to the area. (Do try this…it works!). Try Claritin once a day to address pain caused by histamines from cancer cells . Try Physical Therapy to override a sedentary lifestyle caused by months of pain.
Someone mentioned a mattress heater..game changer! So wonderful to crawl into a warm bed at night!
I will write again after I meet with Palliative care…but right now I have a goal to golf again come spring. So I have to see if more radiation will be worth the impact on my bones and ultimately red blood cells.
Best wishes..yiu sound young because you mention work..I’m sorry this has come to you so early..it makes a difference as you need clarity and relief to function. Hang in there!
We do have a somewhat similar story! I did not know that about Claritin so I will probably try that. It will probably be the least harmful anyway. I'm starting to wonder if I should be having a nerve-related drug. Through my right pelvis it feels vaguely nerve originating, I suspect my right illio-sacral joint . I'll discuss it with them. The worst thing is that all through this period my regular oncologist has been MIA! She never returned from her holidays and they still don't know when she'll be back! (obviously something happened but just horrible timing for me). We have a fantastic relationship and I feel like she looks out for me. The temp. replacement is a topnotch oncologist but her manner grates on me, and well, I don't know HER at all, and she's a bit too blunt and direct at a time that I'm really going through more fear than usual.
I will try the Flexeril tonight to sleep, that's the next one they gave me to try after I hated the Tramadol. I'm praying it doesn't make me nauseated. I might try Voltarin too, I have an over the counter which is usally very good , it helps my tight leg feeling at least.
It's a vicious circle with the pain, meds, and trying to keep active, isn't it? I just turned 59 recently and teach fitness. Only some of my clients know my situation, even though I've known nearly all of them for years now. So this is reaching a critical point for me where I'm going to have to either stop working, limit working, or at the very least open up about my situation. Many don't know how much I've physically regressed because I'm mostly verbally directing them online now and not demonstrating. But I think I'm done hiding the reality now. (never did earlier for work reasons, and because people's attitudes change and I didn't want to feel that).
Anyway, I wish you the best with your meeting with the pain management team . I'd love to hear what they had to suggest. I've wondered about medical marijuana too, we have it here too. But I've also watched different seminars about it and know that it is crucial to get only high quality product and guidance by someone who knows the appropriate dosing for each person is different. It seems a bit of a high hill to climb. True experts in the medical area (even if they're in a certified place) are in the minority.
I am on opiate therapy because I have neuropathy where the tumors are laying on my peripheral nerve and it effects my entire left arm, shoulder and hand. Don't have much use of my hand. I take gabapentin 3x a day, low dose time released morphine 2x a day (prevents high pain spikes) and oxycodone for break through pain. I am on palliative care and they manage my symptoms. Without this therapy I would not function at all. My pain is 24/7 and with all the meds it only gets down to a level 4-5. I no longer can take ibuprofen since I am on Eliquis. I monitor how much oxycodone I take because it has acetaminophen in it. With the pain meds I take onesdraten for (generic zofran) nausea, without it I would be so nauseated and it works great. Because of the letrozole and Ibrance I rarely have constipation with the opiate therapy. If I do have an occasional constipation I use miralax which is a tasteless powder I mix in tea. I tried muscle relaxers but they don't work on neuropathy and neither does ibuprofen nor Tylenol, nothing over the counter works. I even used lidocaine lotion that lasts about 5 minutes. I tried everything to avoid opiates but I can't live with a high pain level of 10 and constant shooting pains. My oncologist and palliative care are all hoping that when the tumors shrink that I will have pain relief. I've only just started my 2nd cycle of Ibrance so too early to tell. I have lived with this pain now for six months. I start physical therapy later this month. And with all this I can function somewhat normally. I didn't want opiates but without them I have poor quality of life. This is my pain journey.
I don't know about USA medications but here in New Zealand you can get Oxycodone on its own without the Acetaminophen in it. At this point I don't have pain so I can't help with the other stuff but I did work for hospice for 8 years so I checked and yes we use Oxycodone on its own.
That is certainly a lot to endure. I really hope the ibrance works well for you! I had wondered if Zofran to combat the nauseau would help so thank for sharing your cocktail with me. And yet the main issue with the opiate for me is the weird loopy feeling in my head, that's the hardest thing for me to tolerate. Do you have that all? I mean that's mainly why I spent the day on the couch not able to do anything. I wonder if resolving the nauseau part would make any difference to that?
The zofran works great for the nausea, the trick is to take it about 20 minutes before taking the pain med. The Ibrance causes me nausea too, so I take the zofran before taking the Ibrance, I take Ibrance at night and letrozole in the morning. Yes, at the beginning I got that loopy feeling from oxycodone but it went away for me after being on it for awhile. But I still get the nauseousness, that never went away for me. I could not do opiates at all without the zofran. I too spent time on the couch until I got past the loopiness.
Ok thank you, that's very helpful! Do you remember how many days it took you to get beyond the loopinesss feeling? I didn't imagine one might get to a point they could tolerate it.
I think about a month. I also pushed through the feeling of loopiness but I was not nauseated and that made a big difference for me. I think it sounds like the nauseaness might be the worst culprit for you?
Yes I know it's a long time. I am so very sorry that you are going through this, I wish I had a magic wand 🪄. Palliative care may have a good pain management strategy for you.. I know what it's like to live with unrelenting pain daily. 🤗 Alicia
Thank you, and now it’s miraculously mostly lifted. Thank goodness! But now my forehead hurts to cough, and I had pain under my rib near my liver this morning, which was disturbing. Hoping that was actually from my back and not my liver! Always something new lol
13plus, I know there's always something that crops up with us MBC thrivers, right? If the pain under your rib continues you might want to let your care team know. I have a saying it's better to nip it in the bud while you can before it gets out of control. This is especially true with pain. Hugs 🤗, Alicia
I can definitely relate to all your pain, I have been dealing with it as well since the end of October. The only scan that finally showed what was causing it was an MRI and we discovered I have a fractured sacrum.
I am taking an Opioid which you said you don’t want to take but I also take Gabapentin and Cymbalta for nerve pain and it seems to help with all my all-around pain.
Maybe one of these medications can help? I am also connected with Palliative Care and they are a tremendous help.
Wow Allison bone fractures must be really painful!! I don't have mets to my bones just in places I wish I didn't have like both lungs, liver, adrenal gland, two lesions in one in each kidney and one of my ovaries. No pain from those areas. I have two tumors one in the left armpit and one by my collar bone that are visible and that's what is causing the neuropathy. I hoping the Ibrance and letrozole will take care of those tumors lickety split.
Thank you, perhaps this is a time for me to connect with palliative care too. I'm not sure if you can stop and start using their services as needed? Are you in the US?
Palliative care is not like hospice … though they can and do work together. They are are just more skilled in delivering meds that work for serious pain . PT and radiation are also part of it. Yes I am on the states…best wishes. ❤️🩹❤️🩹
You can start and stop palliative care if you wish. Hospice is really for end of life event and even then if you get better you can stop hospice. The thing with hospice if you have a hospital stay it stops but palliative care doesn't. You can still be on palliative care even while being in the hospital.
I am sorry you are in so much pain. Nothing is harder to deal with than pain.
Drugs might offer temporary relief but of course you want to stop the pain. Pain is so debilitating. I don't know if you want to hear what I am saying but you might try fasting. It is not pleasant to fast because most of us love food and we are so addicted to our diets. But...you might consider it. My husband has had ongoing chronic pain in his whole body for a long time and often couldn't lie down in bed because of the pain. He has a - yet undiagnosed - muscle wasting disorder. He is currently waiting for a muscle biopsy to try to identify the disease that his neurologist believes he has.
Recently after watching YouTube with me he listened to Dr. Ekberg on fasting. What he said seemed to to resonate with my husband so he decided to try fasting. He is 82 years old and is quite a determined old bugger when he makes up his mind to do something. So he fasted for 72 hours on nothing but two cups of black coffee each morning and lots of water.
He is currently completely out of pain and his swollen feet and ankles are normal. The pain left almost immediately and it is now about 6 weeks since his fast. His vision slightly improved too. Which is quite amazing. He sleeps longer periods of time at night without having to get up to have a wee and so he is not as grumpy.
He doesn't know if the fasting has helped with his muscle loss but we both plan to go on another 72 hour fast in February. I did the 72 hour fast too but not at the same time. It took me a few weeks to psyche myself up to trying it.
I also had improvements in my feet. The fast did not produce as many amazing things as my husband's fast but my feet have been so much improved.
My feet have been a problem since I started taking Ibrance and Letrozole - the hormone drugs I take for my MBC. I believed it was a side effect that I would have to live with. My oncologist offered no way to relieve the numbness - especially in my toes. This numbness caused me to walk slowly and to lose balance. Since the fast I now have less numbness in my toes and I can feel my instep when I walk. My gait has improved and I don't feel like I am off balance.
So I am also benefiting - I believe - from the fast. Not as dramatically as my husband but I have had some benefits and think it is definitely something that I can do to help myself stay healthy and happy while I take my mbc drugs.
Fasting is not easy - it takes determination and a belief that you are not hurting yourself. After the first day the fast was easier. I don't think it is dangerous but if you have a heart condition or something else you should probably consult your doctor before you try it. If he says no - just simple intermittent fasting might help. I think most doctors would approve intermittent fasting. And it is easy to do.
The 72 hour fast allows the body to go into autophagy which is a state where the body cleanses and recycles bad things in the system. It makes some sense to me. Autophagy begins at 17 hours without food so by the time you fast for 72 hours with only water you are probably getting a much cleaner system. And I believe you start producing new stem cells. That makes me hope that they discover that fasting is a way to cure mbc. Right now that is just a HOPE!
There is a lot of info on line about fasting and its benefits. Of course, you should watch everything you can and read up on it before giving it a try. If you are desperate to get out of pain it is worth trying. Of course, my husband did not know what to expect from his fast. He just wanted to try it after watching a Dr. Sten Ekberg on YouTube.
By the way.....heh...heh... I am not on Dr. Ekberg's pay roll. I just watch him on my TV.
My husband didn't believe in all the stuff I watch but he felt that the information made sense to him so he decided to try it. He has had no negative side effects - only positive effects. My only negative side effect was feeling very tired for a couple of days after the 72 hour fast. After that cleared I was in a happy and energetic mood.
I wish you the best solution to your pain. Hugs Marlene
Thank you for taking the time to share you and your husband's experience with the fasting. I know many swear of the benefits of fasting. In my case I know my pain is from the cancer in my bones, and I can't really afford to lose more weight either. Recently I happened to lose weight, even over days where I ate more than usual, which is not a good sign re-my cancer. So fasting won't be appropriate for me right now.
That's great for both of you that you had such a significant response. I wonder if the fasting enabled your husband's system to empty of some kind of food type that was agravating his system? Certain foods that you develop an allergy to (which can happen at any age) can cause a lot of inflammation in the body (and pain). An allergist might be worth a visit to rule that possibility out. That would probably be something different to the reason for his muscle wasting. Hopefully you will get that muscle biopsy back soon and it can be treated. Exercising can help reduce neuropathy, so now your feet feel better it would be great to get as much walking into your day as possible. I didn't even know that was a possible side effect of Ibrance.
Thank you for responding. And thank you for mentioning walking because now it is easier for me to walk and I am trying to go for many more walks. There is a sea wall not far from where I live and I love walking on that sea wall. My husband actually gained weight after the fast. We are goth mystified by that. But I know that in your case it might not be wise to fast. Even it you think it is not good for you it might not be a bad idea to ask your Oncologist about whether is could help you. It is not a bad idea to look into the whole subject because you never know it might be something you could benefit from. My cancer was also in my bones. But I have not had any sign of it for over two years. That is not because I have been fasting because I only started fasting recently. But it might be because I have made some dietary changes and I also spend a few hours a day on a Wave Mat. The Wave Mat gives off some kind of infra red rays. It is supposed to be healing. It almost immediately made me feel better. It feels good and is comforting because the crystals heat up and offer warmth. So not sure what is helping me but I don't leave out anything. Miracles happen because we are willing to not give up. I sure hope you find a way to heal your wonderful bones. Hugs Marlene
I ordered the Wave Mat on line from a place in New York. That was about 4 years ago. It cost me $1100 Canadian. It is a mat that you can sit on or lie down on and it is filled with crystals. You plug it in and it heats up the crystals and the crystals give off some kind of far infra red waves that penetrate the body. I have heard that there are now Wave Mat representatives in my area in BC. But if you are interested in knowing more about it you can just google search the word Wave Mat and you will likely get all the info you need. My Wave Mat is a PEMF. I believe it helps me. Hugs Marlene
I also do fasting both a 2 to 3 day and intermittent fasting daily. I have been doing it for many years before getting dx with MBC. I don't feel any different regarding pain. But it helps me to maintain weight and I just feel overall better. That's interesting that full fasting produces new stem cells. Does that also work for intermittent fasting?
Hello…well you certainly put an idea in my head…I did a little search and there seems to be a lot of literature and studies about fasting while fighting cancer. Fasting periods are tough on cancer cells so they succumb to treatment better. Here’s a link to a study that investigates this phenomenon.
I also do some intermittent fasting. It might be helping me with my weight also. However, I still need to lose at least 10 pounds to feel good. I know I am a bit over weight and that makes me upset. So I will continue with the fasting. I have lately really struggled with my cravings for sugar. Cutting myself off seems to make it worse. the recent holidays really made my sugar addiction that much harder. If I spend time alone (with my husband) of course but don't do too much socializing I find I can stay away from most sugary foods. But if I begin socializing it gets harder. When the weather improves I will begin walking the sea wall again and I know that will help. MBC is a very difficult kind of illness because most of the time I look and feel pretty good so others expect me to keep up with them. That also makes social life harder. I will continue to include intermittent fasting and sometime in early February I plan (along with my husband) to do a 72 hour fast. I do the fast during my 7 day rest period - this time I will do it on rest day 4, 5 and 6. That way my blood with have recovered. I usually get a blood test on day 3. Last time I did the 72 hour fast I was very exhausted at the end of it and it took me a week to regain my energy. So this fast will take place at the end of the 7 day rest. All the best. Hugs Marlene
Oh I too have been craving sugary food. I wonder if it's because my glucose levels are low like 85. I tend to be the opposite, when I socialize I tend to stay away from sugary foods but home alone and late at night I am stuffing my face. It's only been recently that I have been doing this. It sounds lovely walking along the seawall. I understand when one looks good, others seem to think we are just like them but it's certainly not the same energy level. Our bodies are fighting cancer 24/7 and that takes a toll. Hugs. Alicia
Hello Alicia. Thanks for responding to my sugar concerns. I am experimenting with different things but don't have any solutions to my sugar craving problems yet but I will let you know if anything I am trying works.
Right now I have included coffee in my diet and I add one or two teaspoons of extra virgin olive oil to my coffee in the morning. I hope it makes me feel more satiated. I want to see if it reduces the cravings. But I just started doing this so I don't know yet if it will help. I am also hooked on sugary chocolate so I am also going to try switching to 85 percent chocolate which is very low in sugar. Not the same flavour but it might help reduce the cravings.
I will share what I learn if it is helpful. By the way, I do crave less sugar when I go for walks and when the snow disappears I will begin walking on the sea wall again. Hugs Marlene
I have to tell you that you're amazing!! Six years of dealing with this MBC. My journey started right off the bat with pain, that's what sent me to the my primary care and that was only 5 1/2 months ago. I hope to do as well as you 13plus. Hugs and prayers, Alicia
Thank you for your kind words. I feel very grateful for these past 6 years . I’ve lost a number of friends along the way who didn’t last nearly as long with metastatic disease, but the drugs since then have come a long way in giving many of us much more chance for longer survivorship. Long live us!
I have tried everything and nothing worked. I had the muscle pain you describe plus knees, calves, IT band, hips. The pain doc finally prescribed Butran’s patch 20 mcg. Each patch lasts one week. It is an opioid (buprenorphine). I have severe osteoarthritis that started after the MBC. It helps with that too, supplemented by Tylenol Arthritis every 8 hours. He prescribed baclofen 5 mg for muscle spasms but it has no effect on me. It may on you. I still have significant pain but not the paralyzing kind where all you can do is moan and cry. Thanks for the heads up on Tramadol. That was recently rec’d to me.
Adding osteoarthritis into the mix certainly adds to your pain load. I have a client I work with who has it so I'm well aware of how much it can flare up and effect what one can do. I'm sorry you have to deal with that as well.
So I wonder if the Tramadol is lighter than the opiod patch you use? They claimed to me that Tramadol was the lightest of all of them (but way too much for me!). I did try a muscle relaxant, Flexitor, the other night, and it let me sleep soundly. I've been fortunate that since then the pain hasn't been nearly as bad so for now I'm persevering without anything. Giving my system a break while I can! After I've got settled on my treatment for the cancer I might ask about meeting with palliative care for future " pain events".
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I DID feel that the Frankensense took the edge off. Sunday night I took the muscle relaxant before bed and slept well. Monday I was a bit better and then after that I've ended up being fine! The pain just dissipated. Feeling grounded again now. I'm sorry to hear you've had a rough couple of days ... hope you're feeling better by now too!
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