When is it enough

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desert
Regular Member


Date Joined Feb 2011
Total Posts : 93
   Posted 2/21/2011 10:01 AM (GMT -6)   
Hi everyone. I've read through a lot of this forum and I've been so impressed by how welcoming and helpful everyone is that I finally worked myself up to actually posting and sharing. I always see these kinds of forums since I started researching, but I've refrained from posting because I see the preponderance of posts are from people with way more pain and problematic symptoms than I've ever had. I don't want to belittle their issues by posting myself. But I've been facing more problems recently that I need advice of people who can understand me in a way that friends and family cannot.

Basically I injured nerve roots in my neck more than 10 years ago on a birthday kayaking trip. But it was only after switching to some truly amazing doctors two years ago that the problem was located and I started the first treatments that had a measurable effect. The treatment was a series of epidural injections (less fun than usual because of my reaction to needles, the first one I was shaking so bad I think I almost fell off the table... twice). So after my first four epidurals, I'm now maxed out on steroids until April. But I've been continuing to feel the effects, mostly as the weather stays variable. I'm at a maximum of around 2 hours of sleep a night and a spike of pain yesterday combined with the lack of sleep managed to end with me missing my footing on a step ladder and falling 4 feet to put a quarter size hole in my leg (you can imagine how getting that patched up went with all the needles). Although the goal is to wait until April, I'm feeling like three weeks later I need to be returning to the doctor. Even though my pain management doctor is exceedingly nice and helpful and has repeatedly told me that he is always available when I need help, I always feel funny going in. I know that he sees many people who would love to have their pain reduced to the level that I started at, and I always worry that I'm overreacting to my pain levels. When I'm at the doctor I often find that this feeling leaves me unable to express what I'm really feeling to my doctor.

My questions to the people here are: How do you know when it's time to return to the doctor early? Do any of you feel the reluctance to return that I do? How do you deal with that? And how do you get past that to be honest with your doctor about the amount of pain you're in and how it effects your life?

Thank you all for reading and for your help.

All-Seeing Eye
Regular Member


Date Joined Oct 2010
Total Posts : 201
   Posted 2/21/2011 10:40 AM (GMT -6)   
I think you should go in and talk to your doctor with a clear head. in fact, meditation can be perfect for this. 5-10 minutes of meditation will clear your head of all those intrusive thoughts so you can express how you really feel to your doctor without thinking of all the preconditioned responses in your mind.

Just be HONEST and don't THINK about it. Just express how you feel and be honest and your doctor will understand. I think too many people try and come up with a speech or think "what line should i say" to get their doctor to believe them. In my experience, if you are just straightforward to a doctor and tell them like it is, they will help.

Screaming Eagle
Veteran Member


Date Joined Sep 2009
Total Posts : 5005
   Posted 2/21/2011 10:57 AM (GMT -6)   

 

     Welcome to the forum desert!

          One good thing I see here is that you are seeing a Pain Management Dr. My question is, has he or she  perscribed any pain med's for your pain? Generaly, once you have had an Epidural, it takes about two weeks for the maximum effect to kick in. These work for some, and then again, not so well for others.

     It may be, that you need a Breakthrough med to help with your pain at this point.

          Also, our Moderator (Chutz) posted this pain scale chart, and you might want to take a peek at it to gage your pain scale.

http://www.wemsi.org/painscale.html

     If you will read the Chronic Pain 101 located at the top of the forum page, it has a printable Pain Journal, that is a great tool both for you and your PM.

        Everybody is different in how much pain they can handle on a daily basis, but for me if I'm above a 5 or so, I then contact my Dr for an adjustment. My own pain scale seems to be all over the place, as just sitting can raise my scale by 2 points.

      You are your own advocate when it comes to getting treated for your pain. Dr's will seek the source of the problem and attempt to repair it, but will seldom ask you if you need anything for your pain. They will of course try the least evasive items first, such at PT and Epidurals. (for back problems)

       Honesty is the best route to take with your DR when it comes to your needs. Show him your journal if you are keeping one, and then let him suggest the way to handle your pain. Again, it will be up to you to convey that you are hurting and need some sort of relief.

  Good Luck to you,

       SE wink

 

Post Edited (Screaming Eagle) : 2/21/2011 9:05:52 AM (GMT-7)


desert
Regular Member


Date Joined Feb 2011
Total Posts : 93
   Posted 2/21/2011 11:11 AM (GMT -6)   
Thank you All-Seeing. That is something I have never tried. Do you have any pointers? I've never really tried meditation before and it seems to mean so many different things to different people. I do find that just putting my mind to rest is a difficult task for me and I often over complicate communication. I know it should be simple, but for me I think it's going to take a lot of practice.

I have experienced the whole "how do I convince the doctor" stuff before when I had poor doctors where I last lived because I often felt that they didn't always believe me. I've never had that problem with the doctors I have now. They have shown themselves to be great people who trust and understand their patients and have never disbelieved anything I have told them. My issue is more with being able to offer information. I don't really understand why. It just seems when I get to the office I clam up and my vocabulary becomes simply yes and no.

desert
Regular Member


Date Joined Feb 2011
Total Posts : 93
   Posted 2/21/2011 11:47 AM (GMT -6)   
Hi SE. Thank you for the welcome and the response.

I have definitely felt the effects of the epidurals. When I was at my best between some of them I actually had a handful of pain free days. So exciting! But then they disappeared and it's only been getting worse since. I've spent the last while reading that 101 post and following pretty much every link in it. It's one of the best resources I've found yet with all sorts of info in one place. It's also one of the big reasons that I finally dropped into this forum and started talking.

Pain scales are something that I've been struggling to come to terms with as well. I do always find it frustrating when asked to rate my pain on the 1-10 scale with no reference point. The numbers mean nothing to me without some kind of description. I do really like the one you linked. It has a different reference point for each number. The ones that give a range for each level I find confusing as well because how do I know where in such a range I am. This scale seems skewed toward the low end, but is still easily the best I have seen.

My pain definitely changes based on position as well. And so often when I'm at my doctor's office I'm at my best. Isn't that always the way :P.

I have only just started my own pain log. I made my own pulling from many sources I have found, but so far I just find keeping the log even more depressing.

I guess what's also on my mind is that in the absence of locating the issue and finding anything that helped, I've put up with my pain at full force for years. I didn't have any other choice. But then when figuring out what's right, how do I know what pain I should just put up with versus complain about. I mean I've made it this far, so obviously it's possible. Is it when it stops forcing interference with my life? Or when I can hide what remains well enough that those around me can no longer tell? Is it just when I can sleep enough that I'm not constantly tired? Sorry, I don't mean to unload all my burdens on others. I just find it all very confusing. Maybe these are personal questions that I have to find a way to answer somehow. Or maybe you just helped me to find what I needed and these are the questions I really need to ask my doctor.

I really want to thank you for all the help you've given me, which I didn't dare really hope for. Thank you.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 2/21/2011 12:21 PM (GMT -6)   
I found that writing stuff down and having my hubby help type up
a list of questions is my best approach with doctors, as I get scared of them.
Freezing up in the doctors office is probably more common than you realize,
it's not a place I like to be...I also type up a list of medications I'm
on and allergic to and tried.
You do need to call the doctor as your fall might have made things worse, so
call and get an appointment.
Also, there are some natural things you can try, omega-3, tart cherry juice small amount with
dinner as it's got some melatonin which will aid in sleeping, and maybe adding vitamin D....
Hope this info helps and that you get a low pain day soon...
((((((((((((((((((((((((((((((((((((((((desert))))))))))))))))))))))))))))))))))))))))))))))
well wishes and healing hugz
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

desert
Regular Member


Date Joined Feb 2011
Total Posts : 93
   Posted 2/21/2011 1:42 PM (GMT -6)   
Yeah, doctor's offices are strange. Even though I like my doctor and trust him completely, still I find it hard to communicate. It's so silly, but I cannot ignore it and have to find a way to communicate effectively with my doctor.

So I just got off the phone with the doctor's office and setup an appointment for Thursday (I managed to slip in right before he goes on vacation). Wish me luck, I've put a lot of motivation behind this one.

I'm definitely going to try some of those ideas. I'm happy that I've got my appointment and that I'm really pushing to tell him what's going on with me this time. But Thursday still seems like a long way away if I cannot manage to pull off a few more hours of sleep.

Thank you for the help and hugs and advice Chartreux. :-)

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2024
   Posted 2/21/2011 2:28 PM (GMT -6)   

 

 

              Welcome aboard Desert!! You will really enjoy the people here on this forum.

            They will even feel like family. Many of us here have made some close friendships as well.

            Please join us on Chat night where we have a lot of fun!

            Let us know how your appt goes on Thurs. I wish you lots of luck.

 


SUZANE

One day at a time!!

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16796
   Posted 2/21/2011 2:51 PM (GMT -6)   
Hi Desert and welcome to Healing Well's chronic pain forum. I am glad that you took the big step and decided to post and join in with us. I think that first post is the toughest one, it was for me when I first came to HW. One thing I would like to say to you is never feel that you need to compare your pain to anyone's here. It is your pain and your's only and you know what an impact it has made on your life. It does not matter how bad or how good of a day you are having, you still suffer and everyone's perception of pain is different. CP is really an individual type of an illness. You may have a higher pain tolerance than others you just never know, but please don't ever discredit your pain to anyone.

You know talking to our drs and relaying to them correctly how bad our pain is, is really difficult for a lot of us. I have trouble telling my own PM dr how bad I hurt. I think some of it is I do not want to admit to myself that I really hurt that bad because I try so hard to overcome the pain in other ways besides medication. I think admitting it is hard for all of us and that does hurt us when trying to express it to the drs. I have for years always said I was in control of my pain it was not in control of me and I probably do not come off too well with the dr in explaining how bad it is because I try to downplay it to myself. I will say this though, my PM dr has her own pain chart, it is not anything like I have seen in other drs offices and her chart is accurate because her chart deals with the daily living activities. Its a shame all drs do not have her chart because it is so detailed and accurate. You asked when to cll the dr, I usually give myself a good three days and if I cannot get things calmed down, then I will the dr. My dr has figured me out pretty good from listening to me on how bad I may be hurting. Another factor with me is my blood pressure goes off the scales when I am in a lot of pain too.

Anyway, I wanted to pop on and tell you welcome aboard. Take care and good luck with the dr.
Moderator Chronic Pain Forum

desert
Regular Member


Date Joined Feb 2011
Total Posts : 93
   Posted 2/21/2011 2:56 PM (GMT -6)   
Thank you Suzane. I'll be there.

desert
Regular Member


Date Joined Feb 2011
Total Posts : 93
   Posted 2/21/2011 3:55 PM (GMT -6)   
Thank you straydog. It has been really good to hear that I'm not the only one facing these kinds of issues. Knowing that others have faced and overcome what I'm dealing with is strengthening and helps me to have the confidence to tackle it myself.

Although I have found little to help my pain on my own (little of lasting effect anyways), it's still hard to admit that I cannot simply control it or deal with it on my own. I think between the visit a few weeks ago where I fumbled around the topic for a long time (and I know my Doctor noticed) and the note I left his as to the reason for this visit, I may have successfully trapped myself into being forced to admit to him where I'm at. That combined with the help I have derived from members here (and perhaps a little of the desire to not have to return and admit that I failed to pull through) leaves me quite hopeful that I will manage to tell my doctor how I'm actually feeling. And hopefully that will lead to some relief.

I also plan to print out one of the pain charts from this site and bring it with me so that we'll have a better focus for our discussion.
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