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A truly miserable day

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Posted 6/8/2013 7:13 PM (GMT 0)
thanks, SE, I knew you of all people would totally understand. the day I started this thread, I was besides myself, and knew it was mostly the pain speaking for me. Had to talk to someone, so I turned to the one place where I didn't have to explain or justify my feelings, one of the great benefits of HW CP.

david
Posted 6/8/2013 8:58 PM (GMT 0)
And I hope today is finding you feeling a bit better! I'm sure you may get a little tired of hearing how inspiring you are to so many of us, but you shouldn't because it's the truth. When I first started 'lurking' on HW, and then when I went on to become a member, your 'story' was one of the first that I started following - simply because I was amazed at how much you'd been through (and were still going through), and how supportive and caring you were towards other members. To you, you may just be 'you', but to others you are an example of someone who doesn't let their illnesses define them. Thank you for that, David.

I only mentioned the dronabinol because I was trying to think 'outside the box' a little by giving you an idea you may not have considered before. Although this medication is commonly used and is nothing like (the thing we shall not say! C:) - people tend to shy away from it. The ironic part is it is less restricted than many narcotics - such as oxycodone, morphine or fentanyl, for example - those are Schedule II, whereas dronabinol (Marinol) is a Schedule III. Anyway, please do keep it in mind. Although it is not listed in the conditions it is used to treat, it did help my friend with her abdominal spasms (mainly uterine).

You continue to be in my thoughts - be well, David. Have a peaceful day. :-)
Posted 6/8/2013 9:19 PM (GMT 0)
thank you splash. I am at the point, where I am open to anything "outside the box". I am waiting to have this appointment next week with this CRPS specialist, and see what he thinks is going on, my oncologist is anxiously awaiting the results too, before we move on to the next step.

I have a lot of patience, and will wait to see if this proves anything of value or not. If not, will move on to the next idea.

Today, been a bad pain day. On those days, I often know the moment my eyes open how its going to be. Already spent from 130 to almost 530 today in bed, and even laying down with meds, the burning pain from my hips to my feet kept me from relaxing enough to get any sleep. But it was still better than standing on my feet. Got to be some better answers out there, that's my hope and prayer.

david
Posted 6/8/2013 9:32 PM (GMT 0)
Im really sorry to hear that you are having a hard time right now shakehead     I really pray that your docs can find a treatment that helps you with it all. Im sorry I dont have any advice as Im not familiar with the conditions you have but I will be looking for your update!

 

Hang in there!

Posted 6/8/2013 11:14 PM (GMT 0)
Thank you Sophia, hope you are doing better yourself, been looking for an update on you.
------------------------------

It took 4 Lortabs (spread out), 3 Advil, a fresh 100 mgm Fentanyl patch, and laying around in bed for 6 hours today to break the worse of the pain cycle. Doing a bit better this evening, now its like a "normal" pain day. Amazing how weird it is to say that's not too bad, its all relative of course with pain.

david
Posted 6/9/2013 4:26 AM (GMT 0)
David,

((((((hugs)))))) I'm so saddened to hear that your pain is so bad right now. I wish they could figure things out and get to the bottom of things for you. It's not fair that with everything you have already gone through, that you must deal with this severe pain.

I'm truly upset that you can't get the relief you need. I know I can certainly understand your feelings of being to the point of trying anything for relief.

I pray that your appointment on the 11th goes well and this Dr can pinpoint exactly what's causing this pain. I want you to be able to have a better QOL with your wife and family. I know I sure wish I had it, I too, like you am dealing with severe pain on a daily basis. It's certainly not fun in any way, shape, or form.

Here's praying that today is a better day for you. You know you can contact me anytime you need.

Hugs,
Barbara
Posted 6/9/2013 5:05 AM (GMT 0)
barb,

just coping like the rest of us do. I have "normal cp" pain days, then I have really bad ones, like today, getting to have more bad ones than normal. hoping help and answers are on the way, perhaps with the new doctor, and I know my oncologist is prepared to make whatever changes are needed.

thanks so much, hugs

david
Posted 6/10/2013 8:47 PM (GMT 0)
Hey, David
Nice to run into you over here. Or not, as it's the chronic pain forum. As you may remember I'm on the PCa forum. I'm not currently in chronic pain, but after years and years of chronic cluster headaches, I can relate to that kind of day. I hang out here sometimes thinking that I may be of help to someone in that situation.
I wish I could take a little of your pain away. Just a little.
I remember clearly days when I would have to teach 2nd or 3rd grade after having a night of a half dozen serious clusters-the moaning, screaming, hitting yourself kind. Sleep deprivation sucks and so does a pain hangover. I couldn't call in sick, because if I did it would be every day for months until I was out of a cycle. So, I machoed it out.
You are such a trooper, but... there are those days. When a cluster would appear after I'd been headache-free for awhile, I'd get depressed. Then for weeks I went into survival mode, just dealing. I would always get to a point where I just felt I couldn't take it anymore. If something at work was particularly bad, that just exacerbated the problem.
Please know that there are so many here rooting for you.
Posted 6/10/2013 9:56 PM (GMT 0)
thank you donft

have the triple whammy of advanced prostate cancer, chronic pain, and chronic fatigue. life sure can be fun with all that going on. I just worry about one day at the time, and rarely think more than a few days in advance, no point, as I never know how I am going to feel at a given moment.

those cluster headaches such like the devil. I am fortunate that in a years time, I might have 2-3 regular headaches, that's one ailment that rarely hits me.

david
Posted 6/10/2013 11:45 PM (GMT 0)
David,
Sure hope the rest of the week works out better for you! So very sorry about the bad day. Hope things turn around for you soon. Many well wishes and prayers. Maybe you can sleep in a little tomorrow! Can hope that for you.
Posted 6/11/2013 1:04 AM (GMT 0)
thanks. yeah, doctor appt. not till 230, so don't have to worry about being up early. hope it goes well and turns out to be a productive visit. kind of skeptical, but I have to go through with it, as I am running out of answers and hope at this point. any improvement would go a long way with me.

like most every one here probably feels, I am sick and tired of being sick and tired, and sick and tired of hurting constantly. my will to keep fighting all of my stuff is wearing thing, getting harder to keep a positive view of my situation, as I know on the cancer side its only getting worse. not giving up, just still a bit discouraged. would love to be in an induced coma for a few days, just so I wouldn't have to feel or think anything. I know that was an odd thing to say, but it popped into my head.

david
Posted 6/11/2013 3:19 AM (GMT 0)
Hi David

Sorry you are having a rough go of things. I hope that tomorrow will be a brighter day and that you are able to cope better with your pain levels. I certainly know the feeling, as in my case with 24/7 head pain, it can certainly get the best of you.

Never give up and always pray for hope.

Suzane

Posted 6/11/2013 3:59 AM (GMT 0)
thank you, suzane

been working all evening on my chronology and note for the new doctor tomorrow, the CRPS guy.

my medical history is so complex the past 5 years it took 3 pages just to get all the major events in the right order. hoping it will make it easier for the doctor to fully grasp my entire situation

david
Posted 6/12/2013 1:40 AM (GMT 0)
David

Prayers for better days !

I use to be annoyed when I had episode of irritable bladder: now I know I am fortunate to HAVE a functioning bladder.

So sorry for what u r going thru.
Posted 6/12/2013 5:16 AM (GMT 0)
David,

I've just started reading the forum, so far haven't seen an update on the CRPS Dr visit today. I really hope that it was a productive visit and they were able to offer you something. Whether it be a DX and then solutions for care, or totally ruling out CRPS.

If it was ruled out I'm hoping they were able to suggest what's causing your pain and how best to treat it. As always you're in my prayers, I'm wishing you better days with much less pain.

Hugs,
Barbara
(((((hugs)))))
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