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Dealing with the fact that the pain may NEVER go away.

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Posted 4/28/2013 11:25 AM (GMT 0)
So I am beginning to come to the realization that the pain I have may be with me for a very long time, perhaps forever.

Now, I know that it is very unlikely to be life-threatening, but being on high doses of multiple anticonvulsant drugs for the rest of my life isn't too appealing.

I've read up about which pain condition the neurologist told me I have and there are reports of people having it for decades, incapacitated and unable to do anything.

I am currently still able to work full time, but not much else. And the pain is getting worse as every month passes, less and less responsive to medication etc.

What am I to do?
Posted 4/28/2013 1:56 PM (GMT 0)
Unfortunately no one can tell you what to do. It is good that you have done some reading up on your condition, I firmly believe educating ourselves is a good line of defense. However, with that being said try not to let everything you read drag you down and don't try to anticipate the next thing. All that will do for you is upset you, wear you out and just zap the life out of a person. Try to take things a day at a time, don't worry about what may or may not happen even next week or even next year, there is no guarantee any of us will be around tomorrow or a week from now. Try to find some enjoyment in your life, reward yourself.

I can understand not wanting to be on medication, none of us do. But, how will you feel or function if you don't take your medications? Can you function without them? Perhaps whatever your condition is, there will be better medications available in the future. We can always hope for better things in the future, never give up hope.

Take care.....Susie
Posted 4/28/2013 1:58 PM (GMT 0)
Allow yourself time to mourn and then fully come to terms with your condition and what it means. By doing this, no matter how bad things may get in the future you will be able to maintain a level of quality and dignity in your life and avoid becoming chronically bitter.
Posted 4/28/2013 2:09 PM (GMT 0)
straydog: Good advice yeah, it is important not to read too much into things and take each day as it comes. Sadly if I miss a dose of Gabapentin (did last night actually), the pain comes back 10x worse very quickly, so it is clear I need them. Thankfully the side effects are manageable, still though can very much feel I am on a 'drug'. Am going on some new meds this coming week so hoping for more relief and less side effects...

Jim: It has been only a year I guess which is not that long in chronic pain terms. So still time needed to adjust to a more limited way of life.

Thanks to both of you, makes sense. It is good that there are internet forums to speak to others having the same kind of issues, can't expect anyone around me in day-to-day life to understand properly.
Posted 4/28/2013 2:16 PM (GMT 0)
Jim is so right, we really do mourn for many changes in our lives when dealing with CP. I ended up getting professional help with an excellent psychologist that was so helpful. Wished I ha fond her a lot sooner. She was the one that told me about the mourning process, something I only linked with death.

I remind myself every day to be thankful for the things I can still do, not what I can't do. Hang in there you will make it......Susie
Posted 4/28/2013 3:03 PM (GMT 0)
You've gotten great advice from the others:)

I just wanted to add that it's REALLY important to not miss any doses of the Gabapentin...Any type of medication like this can cause some very serious and potentially dangerous symptoms by stopping/starting abruptly. As well as make you feel awful with headaches, nausea, and increased pain.

The way I do things is that I found a cheap pill box/7 day of the week, 4 times a day sorter. (They have all different kinds depending on how many times you need to take meds each day) I put all my meds in for the week.

I also set an alarm on my phone to remind me to take my meds.

I have also attended counseling for 6 months about 2 years after I started having chronic pain. It really helped me work on the emotional aspect of it all and realize that we can live a wonderful life "with" CP. It jus takes a bit of reorganization and planning.

As well as I had a "heart to heart" with both my PM and Neurosurgeon asking them what things would actually cause me physical harm or make things worse and what would just cause extra pain. There are just some things I am not willing to give up and the joy it gives me is worth some extra pain.

I just put in some buffer days afterwards.

I actually try to not focus on diagnosis per say as we are all so different and reading about what others experience with spine issues, pituitary tumor, Fibro, or anything else I have doesn't do me any good. I just get up each day, thank God I am here:), and try to focus on other things throughout the da

I've found that if I sit around and think too much about every ache or pain I have, I "feel" it more.. That is why I make sure I get up and exercise each day with walking, yoga, stretching, as well as eating healthy, drinking lots of water, and doing all I can to take care of myself. I also try and do things that occupy my mind so that the time passes more quickly.

We all go through that mourning period....the key is trying not to sit in that sadness or fear about the future for very long as our stories have NOT been written yet:)

Hugs (( ))
Posted 4/28/2013 6:54 PM (GMT 0)
Snowbunny: You are right about missing doses. I rarely do, have become good at remembering. Although I have had a fair few occasions where I take it during a busy period and actually can't remember whether I took it or not. Does affect the short term memory a bit. The amount of pain that comes on is unreal, like nothing else I thought possible, and shows how much good the med does.

I saw a counselor for a few months earlier in the year which was good, bit expensive to do all the time though. I've been dealing with chronic illness and disability for nearly five years now so I guess I have learned to cope to some degree, still very hard though.

The neurologist appointment last week was good -will be getting my new meds of pregabalin (lyrica) and Lamotrigine (spelling???) this week so if they can stabilize it then there is hope.

It is absolutely true that sitting around thinking about it makes it worse. I actually like going to work since I have things to focus on so that helps cope to a degree. Problem is it is impossible to relax and do something passive such as watching TV because the pain starts screaming at me, therefore I have to do only mentally intensive activities like writing this long post here, leading to me being really burnt out and stressed all the time.

Oh well I guess I will probably post a lot more around here, it is one thing that helps, can feel very alone with stuff like this. Anyway, can feel another burning ice pick coming on under my left eye so off to find some more meds and lie down...so it continues. Best wishes to all.
Posted 4/28/2013 8:25 PM (GMT 0)
I hope the meds work and you feel better soon!

We mourn for the ways things use to be, but know that they won't be again. Try to stay active and do things you enjoy as much as possible, even if you do hurt worse after. I planted my little garden of tomatoes, peppers, cucumbers, squash and beans yesterday as well as cleaned out my laundry room. I am paying for it today, but still I have a sense of accomplishment as well as I love to see the vegetables grow and can't wait to eat them

I have the 7 day medicine planner also. Works great as long as I put the meds in and remember to take them. My feet have really been hurting the last few days. I figured out why, i forgot to put the gabapentin in my med box. I now know that it does help, I took care of that this morning and am back on it.

Hope you have a good week!
Posted 4/29/2013 12:25 AM (GMT 0)
its a hard life dealing with chronic pain day in day out ive been in pain since 1977 after a motor bike accident . it took me yrs to accept how I was is the best its going to get . I refused to take pain meds for yrs vowing that the day I started it was like the pain had won the battle .

but you can only put up with it for so long and quality of life has to take precedence .as ive gotten older ive realized I need the meds to help control the pain . im passed the why me stage many years ago ive tried to do things in life that ive wanted to do work and leisure whys and keep a active mind "some may argue ive never been in sound mind to begin with lol"

I learned if I wallow in self pity and wrap myself up in cotton wool come the end of the day im still in pain and if I go mow the lawn or work in the garage im still in pain so I fig if im going to be in pain anyway I may as well accomplish something for my troubles .

I wish you well in finding a suitable pain management regime that works for you and like many of us on here you will find strategy's to help you cope in life . forums like this are very beneficial ive found as often family /loved ones friends cant truly understand what it's like . my pain took its toll on my marriage of 23 yrs and my ex was a nurse with a better understanding of pain than most and she couldn't cope in the end only people in the same boat can truly understand .

it took me yrs to train my DR to find a pain management program that helps me somewhat and at least he has a open mind on things once he really realized I wasn't some junkie trying to rort the system .

good luck with all and hope tomorrow brings a better day :-)

Posted 4/29/2013 8:51 AM (GMT 0)
You've been given some pretty awesome advice and I can't think of anything more I could add to it.

Its a point in time we all pass through on this CP journey and it too shall pass. The only problem being stuck on mourning and never actually move on to accepting and allowing yourself to take charge and make changes that benefit your living with the pain and your quality of life.
Posted 4/29/2013 4:04 PM (GMT 0)
It's very hard to deal with chronic pain issues or anything long term without help, counseling can provide you with help and not just addition medications, a good counselor will work with you...but like other doctor there are good one out there, it took me 4 trys to get a good counselor and he helps me with how I talk to my husband and not to dwell on it as that'll not do you any good.
Most important is you got to keep hope, medical sciences are making advancements everyday and there might be relief possible...I like to hold on to the belief if they can clone the spine, then maybe we could regrown a new spine to take over for the bad spine, seems like sci-fi but hey you never know whats possible...keep hope in the medical field... Hope this makes sense...
Prayers and well wishes
Posted 4/29/2013 6:00 PM (GMT 0)
Thansk for the great advice and support everyone - is very helpful. 7 day medicine planner sounds like a good idea, will invest in one of those.

I think my doctors and specialists are very good so I believe they will find an appropriate management program of meds.

Starting Lamotrigine (Lamictal) tomorrow, anyone taken that before?
Posted 4/30/2013 2:15 AM (GMT 0)
holydiver,

I waited a few days thinking about your post/thread. It's a hard nut to swallow, when one realizes that he/she may have to spend the rest of one's life dealing with chronic pain. This July will make 3 full years for me dealing with CP. I realize that is short compared to some here at HW CP, but its still a long time.

Mine is related to a combination of cancer related pain, and nerve damage that done to me as the results of a very flawed radiation treatments I underwent in 2009.

I am never going to get better. I feel confident that my oncologist can keep most of the pain at bay, but as the cancer continues to progress, there will be more and more pain issues ahead.

I never went through the anger stage, or the denial stage that some talk about, I went straight to the "acceptance" stage, right from the start. That is how my brain deals with things, I can handle any kind of new reality as long as I know what I am dealing with.

Acceptance doesn't change the pain of course, but it brings peace to my mind, that this "new" life of mine, is simply my personal thorn in the side, or my personal cross to bear. I blame no one, I don't feel singled out or cheated, its just the cards I was dealt with.

Hope this helps, I know my method wouldn't work with anyone else in particular, but its working for me. That and surrounding myself with doctors that I trust and respect makes my life more bearable. My oncologist is also my PM, and he really believes in me, and to the level that I suffer. That helps a lot in my own battles.

If by sheer miracle I got better, of course I would be thrilled, but I am a realist, and outside of an extreme miracle, I am not going to ever get better, so I don't allow myself to drift into that thought pattern.

Right now, just trying to enjoy whatever time I have left with my wife and family, and trying to do and enjoy the things I like, for as long as I can, even with the physical limitations I pick up along the way.

Good luck to you, and never give up hope. Hope is one of the best four-letter words out there.

David in SC
Posted 4/30/2013 2:25 AM (GMT 0)
Holydiver,

You've already been given wonderful advice from the others on here.... I hope you'll be able to apply the things that work for you....

I think continuing to post on here and reach out for support is a good thing.... It helped me greatly, years ago, to find a place of support and understanding.

Take care..... good luck w/ the Lamictal... I've not taken that before.... although I've taken other seizure meds.

--Tina
Posted 4/30/2013 3:52 PM (GMT 0)
Acceptance of your CP condition is soo very important. I made my life a living hell for the first two years of my cancer pain until I broke through to the acceptance level. Now I live life day by day, finding pleasure wherever I can. It is really not a sentence, you just have to live your life a bit differently than others . . . Q
Posted 4/30/2013 4:54 PM (GMT 0)
Hi holydiver,

I thought I might be able to ease some of your worries. While our conditions are different, I've been working full-time and in CP now for nearly 9 years.

During my first few years in pain, before it was getting managed and before one surgery that helped, I was barely able to keep up with my minimum duties. However, since 2007, after recovering from surgery and after starting with a PM, I've managed very well.

I'm fortunate to be able to work at home most days, but in principle, I could be in my office more than I am. My work allows me to most of what I need to from home, and with a suitable workspace, have been even more productive than before my CP problems started.

So, depending upon your pain and your profession, you could potentially keep on going long-term.

Let me add one more piece of advice -- IF you have enough of an income to save money, save as much as you can, for an early retirement if needed. I have a settlement in an annuity as well as a pension from my employer. Nevertheless, if I have to retire before I'm 60, I'll definitely need some savings to rely upon as well. So, most years, I save about 1/3 of my income. That means saying "no" to a lot of impulse buying and costly purchases. I drive a 9 year old car, and haven't gone on a trip (other than for work or to visit my parents) for 9 years.
Posted 4/30/2013 6:10 PM (GMT 0)
Purgatory:

Thanks David, that is a really nice post.

Accepting the new 'me' and the consequent limitations is key as you and others have intimated, not the easiest thing but comes down to a matter of time and a lot of soul-searching. I just have to take each day as it comes and go from there.

I completely understand what you mean about knowing what you are dealing with. I have recently got an actual diagnosis which I believe fits and explains a few other problems too, so that helps in a way I think.

Sounds like a whole lot to deal with there for you, sorry to hear it, hope you find enough pain relief to live in comfort.

cogito:

I am thankfully managing my job ok for the moment, but got a promotion starting soon involving more responsibilities so am a little concerned how I'll cope. My employer is very good and I think if it does get bad enough to affect my duties I will be able to work with them on a compromise.

I am only 25 years old so have a while to save for retirement yet! :)

I notice I am very young for this kind of pain issue to come up. This is what concerns me, living out the rest of my life in this kind of pain, or that there is some kind of severe underlying cause (although docs seem pretty sure there isn't). No sense in worrying about that now though, just got to fight on. Certainly an inspiration the kind of things I see people going through on here for a lot longer than I have.

Great words from everyone, I look forwards to giving and receiving more support in the coming months on this forum.
Posted 5/1/2013 2:21 AM (GMT 0)
holy diver. didn't realize you were so young, but it still wouldn't change my philosopy or advice to you, I started becoming a cancer magnet by age 40, my current advanced prostate cancer is my 4th bout with a serious cancer so far, and the game's not over yet. the advice about putting away money is great advice, especially for someone your age. wish I had the sense to do that way back then. let's see, I was 25, 35 years ago. in those days, didn't make much money, and being married with 3 kids and a stay at home mom, saving money wasn't much of a possibility.

it's a good family here, want you to feel you are part of us, we watch out for one another, and feel free to vent anytime you need to unload. we all do it, no one will be offended, and it helps. you are preaching to the choir here, so your vents and concerns will be automatically understood by this group.

hope you are feeling a bit better inside about your situation. and I agree, one day at the time, don't get too far ahead of yourself. I live for each day, tomorrow doesn't happen until tomorrow arrives.

david
Posted 5/1/2013 2:47 AM (GMT 0)
Holy Diver,

I am also 25. I have Cerebral Palsy though, which is something I've had since birth and will have until I die. It's brain damage- so incurable, and although the initial bleed won't "progress", the effects on my body as a result of the bleed, will get progressively more severe as time goes on. None of it will probably kill me outright, but things will get more and more painful as my body wears out.

I've come to the conclusion that if I "give up" then whatever cruel twist of fate landed me with this condition, will win, and I cant let that happen. That would mean my suffering will all be for nothing. I will do something worthwhile with my life. I don't know what it is yet, but I'll find some way to level out the hand I was dealt.

Deep down that's my reason for getting up every day, even when things are hopeless and I'm in so much pain I can't catch my breath or even take care of the basic necessities on my own. Sometimes I lose sight of it, but the *drive* is always there somewhere.

You need to find your reason and hang on tight. All the other advice is great too, but that's mine. :)
Posted 5/1/2013 5:18 AM (GMT 0)
Holydiver I am not trying to hijack your thread but this post brought up some emotions I am going through at this time. I am 30 years old and my pain just started in January so I am very new to this. They still aren't even 100% sure what is wrong. I have them treating both my UC and for intercostal neuralgia. I have so many health problems and now with this pain on top of it I just cannot imagine doing this for the rest of my life.

I have never been terribly motivated to go to work while even a little sick so going to work while this sick is very difficult for me. I am on so many meds I am scared to drive. The meds are affecting my memory. My PM says if it is intercostal neuralgia then I have a good chance of recovering because of my age. For me it is so hard to turn off the what ifs. Also to find the motivation that Lexi is talking about. I was raised in a house where you could cough once and be out of school for a week. I missed more school days than it was legal to miss and the school over looked it because I made good grades.

I have read all the advice y'all gave to holydiver. I think it is great advice. I do have a counselor but I can't see her as often as I would like. Also I had some other family drama going on so I didn't really get to focus on my health. We really focused on ways to destress. I a just so scared.
Posted 5/1/2013 7:17 PM (GMT 0)
Teddtlove: That sounds rough what you are going through, I looked up intercostal neuralgia and that would be very painful I can imagine. I am pretty new as well its only been a truly awful debilitating pain for the last 6 months or so, the months leading up to that it was much less severe.

The meds are really tough to be on, I am needing higher doses as each month passes and the pain gets progressively worse. I am about to go on two new drugs this Friday so am not looking forwards to the initial period of harsh side effects. My short term memory has taken a big hit too, I sometimes can't remember if I have took a med dose or not! Luckily though considering the massive dose of gabapentin I am on I am able to tolerate it, just about.

LexiRae said...

I've come to the conclusion that if I "give up" then whatever cruel twist of fate landed me with this condition, will win, and I cant let that happen. That would mean my suffering will all be for nothing. I will do something worthwhile with my life. I don't know what it is yet, but I'll find some way to level out the hand I was dealt.

Couldn't agree more with this. It is important to accept the things that we cannot change and work with them. I have spent a great deal of time and energy wishing things that cannot be different were. It is something that takes time to adjust to, but I know there are many who manage this (on this very forum for a start!) so I will be able to as well.

David/Purgatory:

Thanks, this thread has already made me feel more than welcome. Can be a lonely existence dealign with a debilitating chronic condition and it is very nice to have this outlet.

Seeing my general doctor on Friday morning to discuss the neurologist's report and issue my new medication. I am fairly confident this will be more effective in controlling the pain. So there is hope. :)
Posted 5/21/2013 5:11 AM (GMT 0)
Holydiver,
After reading your posting I wanted to share a little story. I too am a chronic pain sufferer, and I have been for 20 years. I have oral facial pain caused by damage to V3 in my right mandible. 20 years later, nerve degradation to the root (V1,2,3), plaqueing so bad that my neuro wants to call it MS, spinal compression (2nd round of fusions in 20 days). The bain of it all is the facial pain. If I had Trigeminal Neuralgia and occasion flare ups I could handle it. I have it 24/7/365. Why do I tell this .....
You will find the inner strength to fight the pain. Maybe it will be with the assistance of meds, maybe through counseling. You are the key ... keep the grey matter between your ears from driving you crazy with pain.
I do that every day. Someone asked what keeps me going. I have a bet with my neuro for $1. He bet that I wouldn't make it to 50. 2.5 years to go and that dollars is mine.
Stay strong Diver.
Posted 5/21/2013 6:07 AM (GMT 0)
Drdalto --

Welcome to HealingWell and the CP forum..... your post was very compassionate and supportive! We do like new members to start an "intro thread" (click on Post New Topic).... and just introduce yourself. That way -- all the members can see and give you a proper welcome!

If you have any questions, please let me (or any of the moderators) know.... otherwise, look forward to hearing more from you!

Take care --Tina
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