for the normal results, 
for the not find pain cause. I hope the pain subsides and leaves you alone. I wonder if it's something healing on inside that the scans aren't showing. Big
, and
Sassy.
That must be so frustrating, not only for you, but for the medical professionals that are trying to help you.
I have been on gabapentin for nerve pain for quite a while now. It hasn't done much for me so they're thinking about just taking it off my Med list.
To go along with the nerve pain. One possibility is scar tissue. There might be a buildup of scar tissue that is causing this but they can't go in just to look around it won't necessarily be safe right now. We still don't know if there are cancer cells lurking around.
For my palliative care team. Yes. Especially my nurse. She Advocates so hard for me and I just love her to death and she's told me that she's already cried because of how badly she wants to find my pain and at least help me get over that on some level even if it was just to improve it.
I think that's always one of the funny parts of a visit when you come out now. We can sit there and compare our meds.
I am sorry they have still not found the reason for your painI have been on gabapentin for nerve pain for quite a while now. It hasn't done much for me so they're thinking about just taking it off my Med list.
To go along with the nerve pain. One possibility is scar tissue. There might be a buildup of scar tissue that is causing this but they can't go in just to look around it won't necessarily be safe right now. We still don't know if there are cancer cells lurking around.
For my palliative care team. Yes. Especially my nurse. She Advocates so hard for me and I just love her to death and she's told me that she's already cried because of how badly she wants to find my pain and at least help me get over that on some level even if it was just to improve it.
I think that's always one of the funny parts of a visit when you come out now. We can sit there and compare our meds.
I am glad to hear that it was helping. I hope that the positive effect stays with youI finally found a place that does scar tissue massage. It was incredibly different than anything I've done before. She told me that my right leg is shorter than my left. And then my diaphragm is basically stuck up against my ribs.
Everything she did just kind of felt like it was helping right at that moment. Now that I'm home I feel a little bit weird. But again that was different than anything I've experienced before.
A joked that if my right leg made me 4 ft 9. Then at least that part of me was legally a dwarf. My left leg currently makes me 4 ft 11. Legally a dwarf is 4'9.
Well shit. Apparently I have not looked that up in quite a long time. It is is 4 ft 10.
@barefootgirl69 and I are both screwed if we shrink in old age.
It honestly was just really nice to hear that there were problems. I've spent the last year chasing my pain. And now maybe there's a chance that massage could fix it. Or at least some of it.I am glad to hear that it was helping. I hope that the positive effect stays with you
I know that I'm a little bit crazy for being super hopeful. But after Chasing this pain for as long as I have I just want answers. And want relief. I want to have at least a couple of good days a week where I can get up and feel human.Finally some relief sounds like. Hope the massages can do something to the tissue so it doesn't hurt you anymore.
Not crazy at all. I hope you have found the light at the end of the tunnel and this time it isn’t a train!
Hope this continues to help !!I finally found a place that does scar tissue massage. It was incredibly different than anything I've done before. She told me that my right leg is shorter than my left. And then my diaphragm is basically stuck up against my ribs.
Everything she did just kind of felt like it was helping right at that moment. Now that I'm home I feel a little bit weird. But again that was different than anything I've experienced before.
A joked that if my right leg made me 4 ft 9. Then at least that part of me was legally a dwarf. My left leg currently makes me 4 ft 11. Legally a dwarf is 4'9.
Well shit. Apparently I have not looked that up in quite a long time. It is is 4 ft 10.
@barefootgirl69 and I are both screwed if we shrink in old age.
Oh, Sassy. I hate that the complications and pain are so terrible for you. I’m really glad you expanded your support system though. That can only be a good thing.An update since it seems as though it has been a while. I've been struggling a lot with this lately and have gone into hiding when things feel dark.
The unknown is really taking a toll on me. We've been chasing this mystery pain for almost a year and still no answers. I went in for a colonoscopy yesterday and unfortunately, I will have to repeat is as I was apparently not totally cleaned out. They did take two polyps. I won't know the results of that for up to 10 days.
The pain has gotten worse, and they have increased my pain meds. But I tend to have to choose how I want the day to go. If I want to go anywhere. I can't take all the pain meds. If I have nothing to do. I can take all my pain meds.
MY emotional state has been all over the place because of how bad the pain has been, and how much it controls my days. I can't really plan anything because I have no idea how I'm going to feel. Tomorrow, we have tickets for the Kraken game, and I am not even sure I'll be able to go.
Every test we run. Nothing. I'm angry and overwhelmed. I can't stop thinking of death. Fighting the cancer was easy compared to this. I made it through Chemo and Radiation like a rock star. This pain has taken me out.
Even camping was hard. Wonderful, but hard. The drive was the worst.
I am now doing video therapy which is allowing me to vent to other people besides my family. They are so loving and supportive. I have such great people around me. I know how lucky I am. One of my good friends has gone on this journey with me. She had breast cancer too. Same side, same kind. Now I have a different kind of cancer, and she was diagnosed with MS. She wants me to go on this fun cruise with her next year. A bunch of the Tik Tok people will be on the cruise. But I can't plan.
The weight loss has finally started to scare me a little. I've now lost 60 pounds and am a walking twig. I haven't weighed this since high school. My son in law wants me to ask about getting a feeding tube.
I'm just broken and angry.
I promise to reply soon. I'm trying to figure out if I'm going to be able to make it to the hockey game tonight. We take a light rail and monorail there. It ends up being a lot of walking.Sassy, that’s a lot to take in and I can’t imagine how hard everything is for you right now.
Depression, dark thoughts, death, sorrow, anger those are all totally normal thoughts and feelings to have going through something like this. Let them happen and then tell them to go to hell.
Book that cruise because next year you’re going to be doing much, much better and you need something to look forward to.
I have some stupid questions (shocking, right?):
Are you sure your pain isn’t being caused by one of your medications, or possibly a mixture of them?
Have you (or your family) done extensive research online about this pain—surely someone somewhere has had this same problem and may know what it turned out to be.
Obviously you’re not able to eat properly, have you talked to a dietitian and gone over what your current diet and medications are—there might be something there? Or at least, find some food that you can eat to gain some weight, satiate you and not make you sick?
Things will get better. They really will.
I hope you do make it. I know how much you like to watch men in pads fight.I promise to reply soon. I'm trying to figure out if I'm going to be able to make it to the hockey game tonight. We take a light rail and monorail there. It ends up being a lot of walking.
This is a tough to read. So frustrating. The video therapy sounds like a much needed place for release.
An update since it seems as though it has been a while. I've been struggling a lot with this lately and have gone into hiding when things feel dark.
The unknown is really taking a toll on me. We've been chasing this mystery pain for almost a year and still no answers. I went in for a colonoscopy yesterday and unfortunately, I will have to repeat is as I was apparently not totally cleaned out. They did take two polyps. I won't know the results of that for up to 10 days.
The pain has gotten worse, and they have increased my pain meds. But I tend to have to choose how I want the day to go. If I want to go anywhere. I can't take all the pain meds. If I have nothing to do. I can take all my pain meds.
MY emotional state has been all over the place because of how bad the pain has been, and how much it controls my days. I can't really plan anything because I have no idea how I'm going to feel. Tomorrow, we have tickets for the Kraken game, and I am not even sure I'll be able to go.
Every test we run. Nothing. I'm angry and overwhelmed. I can't stop thinking of death. Fighting the cancer was easy compared to this. I made it through Chemo and Radiation like a rock star. This pain has taken me out.
Even camping was hard. Wonderful, but hard. The drive was the worst.
I am now doing video therapy which is allowing me to vent to other people besides my family. They are so loving and supportive. I have such great people around me. I know how lucky I am. One of my good friends has gone on this journey with me. She had breast cancer too. Same side, same kind. Now I have a different kind of cancer, and she was diagnosed with MS. She wants me to go on this fun cruise with her next year. A bunch of the Tik Tok people will be on the cruise. But I can't plan.
The weight loss has finally started to scare me a little. I've now lost 60 pounds and am a walking twig. I haven't weighed this since high school. My son in law wants me to ask about getting a feeding tube.
I'm just broken and angry.
Okay. Firstly. Thankfully I did make it to the Kraken game. They did not play well. But I didn't care. It felt nice to get out.Sassy, that’s a lot to take in and I can’t imagine how hard everything is for you right now.
Depression, dark thoughts, death, sorrow, anger those are all totally normal thoughts and feelings to have going through something like this. Let them happen and then tell them to go to hell.
Book that cruise because next year you’re going to be doing much, much better and you need something to look forward to.
I have some stupid questions (shocking, right?):
Are you sure your pain isn’t being caused by one of your medications, or possibly a mixture of them?
Have you (or your family) done extensive research online about this pain—surely someone somewhere has had this same problem and may know what it turned out to be.
Obviously you’re not able to eat properly, have you talked to a dietitian and gone over what your current diet and medications are—there might be something there? Or at least, find some food that you can eat to gain some weight, satiate you and not make you sick?
Things will get better. They really will.
