Thank you that’s very kind of you ur suggestion is a great one but my kind of pain just isn’t copeable for me anymore that’s y I’m hoping to God that OHSU is my awnser im not saying you but most people dont get it every week i have dreams in my sleep that I’m a kid hanging out with old friends and don’t have this physical pain if I’m unable to get rid of it its just isn’t a option for me that’s y I’m doing everything I can I’d rather rest in peace than live in suffering holding on to my wonderful past
Hi Justus
I am sorry it is so bad.I am an old lady who has lived her life.
I am glad that you can do vivid visualization.I am hoping that you can
actually envision the new doctor looking at you,at your reports,and the
doctor having an AHA moment and finding that one thing they missed and you
being pain free.
It is possible,it will make you feel better and who knows-miracles
happen.please come back on and tell us how it went.
Although I am much older than you,I am still trying to figure it out.Dental
osteopath tomorrow.
I will try and read up on your comments-I have just needed a break from
things for a bit.
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Justus I think you need to work very hard at resetting your expectations from the idea that this is going to “end” and that you’re going to be “cured.”
First, you don’t even have a diagnosis to work with, without that there’s nothing to be “cured.”
Second, many of things that cause facial pain do not end and do not have cure, they require management.
Third, you have to learn to cope. You actually have no option to this, no one who participates here does, we have all learned to cope in various ways. Life in general is about coping.
The fact that you keep talking about being cured and everything going back to normal worries me greatly, regardless of what happens your normal has changed and that’s something that eventually will have to be accepted.
So the pain behind my right eye is something I’m supposed to just accept I’m supposed to just say well chucks that’s it normal me is in the past I’m sick of ur attitude it’s statements like that that make me feel and say to myself wow u know what maybe I really am doomed maybe I just have to accept that everyone else’s life’s matter more and that’s y they don’t have any physical pain I’m sick of it I’ve had it up to hear with the excuses if my right eye is never getting better y even go to these doctors y pray why get up outa bed why do anything why work for a worthless check that’s how ur making me feel that there is no end to my pain and there never will be thanks for nothing what excpetations should I have then should I expect to never be the same should I expect to never be happy again should expect to hold on to the past forever what should I do because my life sucks I hate my life and myself I need this thing gone no weird shrink can cure that this is all that’s keeping me alive just the small chance that I might be myself one day don’t take my hope away from me
I reread my post to you Justus and I never said you were to stop trying or to accept unrelenting pain. I said you need to start thinking in terms of management as you continue to hunt for a solution. Daily management of what you’re experiencing will make your life better and will make it easier to handle the often frustrating process of finding what works for you. Demanding it be “gone” has not gotten you anywhere yet and it may not get you anywhere any time soon.
Not once in any post have you mentioned or willingly discussed the fact that pain management is a fact of life when you have chronic pain. In fact, when it’s brought up you repeatedly lash out as you have most recently done towards me. Per your own posts you have had five years of pain and yet you continue to act like learning management of that pain some sort of stupid excuse and is beneath your consideration. This is a very poor attitude to cling to and will, in fact, make you feel doomed. If you had a compound fracture of the leg would you refuse to cast it? If you were near sighted would you refuse to wear glasses? I would hope your answer to both of these would be no and that you would do whatever you could immediately to start helping/fixing the situation. Pain management is a way to start helping your current situation in a very proactive way.
I have never said you should expect to never be happy again or hold onto the past. Nor have I mentioned going to a shrink, although based on how you lash out you may want to consider it, clearly it’s on your mind so others must have mentioned it, I’m not sure why you’re so angered by the idea. What I have said repeatedly to you is that you must work with what is happening to you right now this very minute. You must keep an open mind. You must listen and consider and be willing to try things because you never know what’s going to work. I have also repeatedly said there may not be a quick fix, since you’re five years into this you should already know and understand this fact.
Justus you have, by your own admission, had five years of chronic pain and none of your “fixes” have actually fixed anything. This changes you, there’s no way around it. You are not the person you were before and your “normal” has changed, whether you like it or not. The fact that you clearly don’t like it is okay. What is not okay is lashing out at people who have been nothing but kind to you.
The majority of your posts over the past 48 hours have been unacceptable. I suggest you step back, check yourself, and start behaving before the kind people who read and populate this site become unwilling to engage in conversation with you.
I’ve done nothing but try to manage the pain what you don’t understand is that there is no medicine nerve blocks or treatment plan that I’ve found that works yet tried em all don’t talk to me like I’ve just been sitting on a prayer that’s y I’m going to OHSU and I mentioned the shrink thing because stupid people actually think dialogue from one human to another is going to fix anything you need to check yourself im trying to have high hopes and be optimistic while ur telling me don’t ever expect this to be over with not once have you said yea someday this will go away not once have you said it will even get better the reason y I lash out is because ignorant people have told me it’s all in my head but it’s not !
There very well may not be a medicine or nerve block which is why literally millions of people have chronic pain.That does not mean you have to live in pain. What ever caused your pain five years ago may very well not exist any more, but when pain becomes chronic something else is at play and that needs to be treated. That leads to other things. You are setting yourself up for failure before you even get to OHSU. They specialize in those other things. Those other things is what keep the rest of us here who have suffered a lot longer than five years living and enjoying life. What you don’t seem to want to understand is that we DO UNDERSTAND, you simply refuse to listen to folks who have been where you are and have been able to move on without a pill or nerve block, simply because they were willing to do what it takes. If some one told you that painting yourself purple and dancing under full moon while licking frog slime worked, you skeptical, but if a lot of people told you that and showed you the NIH studies that confirmed it (not to mention told you it DID work for them) you would be a complete fool not to be checking the calendar for the next full moon, catching frogs, and at the paint store when it opened to get a bucket of purple paint. You don’t know until you know. A lot folks have tried to tell you what they know.
TJ
Well it’s not all in my head I don’t need a psychiatrist I have good days and even on those I still have this pain behind my eye I believe I’m doing the right thing by going to OHSU I’m not expecting to be cure with one visit but I do expect to one day be a normal and I mean actually normal again I’m setting myself up for success just by reaching out to them councling and all that psycho stuff wont get rid of my physical pain I have alot of respect for you tj but it really makes me want to pull my hair out when people think it’s not physical because it is nobody figured it out yet that doesn’t mean they don’t be able to either atleast I hope not because there my last hope I’m not wanting to invest all this time in improving myself as a human being because that for a fact will not take away this pain trust me I wasn’t always this miserable but after 5 years the only normal human feeling one would feel would have to be hopelessness and desperation tell me I’m wrong ? And I am willing to do what it takes to get rid of the physical pain that’s y I’m going to OHSU in the first place
If memory serves me correctly…in all of my research into finding my ATN diagnosis, Dr Kim’s name pops up as one of the gurus in neuro diagnoses. He created a series os questions used by the field among other state of the art tools. Good luck! It took 30 years of having teeth pulled and suffering in silence until this diagnosis…Im taking carbamazepine and its working. Needs to be titrated up to banish my pain to the background. We’re all in this together to share treatments that work.
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Thank you pattylg1 ur support means alot to me I’m glad that there are optimistic people like you or else I don’t know where I’d be mentally but ur right we all have facial pain of some kind and were a team I just hope Dr kim gets me on the right track is all I’m saying and hoping for just need things to get better
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Seenie, I did have a look at the background, I think before my last post, which is how I came up with the time frame, and looking it again this evening I see no diagnosis so far, I could be mistaken.
TJ, I understand some, great Dr Buchiel might concentrate on Pain as opposed to surgery, but pain management does not address the cause of Justus’s position. (O.K. he might be addressing more than I expect, but can’t help but doubt it- medication outside of surgery, hat off to him if he has other suggestions, so I stand by my original suggestion- a waste of time and indeed money, is the control of symptoms through meds satisfactory?)
Justus, I’m not suggesting your condition is psychiatric, you simply don’t supply enough in your bio, who does? there isn’t room. That said, I maintain if it wasn’t for stress/ tension I wouldn’t have enough work to be in business, and I don’t say it applies to you but you don’t state a possible cause. I know folk who’ve had problems, pains who have held on to trauma for years and it has turned out to be the cause, and it doesn’t fall into the category of ‘it’s all in your head’. Whilst I know this sight is not about diagnosis or treatment, maybe sharing of possible causation aggravating factors might help, why not share a bit more?
Regardless, pain of any sort not due to any nasty ( You’ve had yours for five years plus, so unlikely)-
Treat yourself like your nurturing a tomato plant, short of living in a puddle we are all organic aerobics.
Sunlight- optimize your vitamin D status, your GP can test you for this, if he / she says it is just above 50 mmol ignore it should be greater, if your ill.
Hydration- best anti inflammatory
Oxidation, learn to breath properly i.e abdominal breathing, few of us do, we’re too stressed looking for where the next blow is coming from- the Ex or taxman ( OK my case)
A healthy food source- The ‘pack it in diet’, if it comes in a packet give it a miss.
Change your posture, even your tomato plant does this depending on the sun.
Address stress/ tension doesn’t matter whether yesterday or ten years ago it could be an issue, Prince Charles talks to his tomato plants.
Regardless of your diagnosis, clean your lifestyle.
With all respect to any DR intentions, he is going to offer you surgery and/ or meds , in my opinion last resort
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Dr Buchiel operates an integrated pain center, although he himself is a surgeon, his team includes psychopharmacologists, hi level pharmacist, psychologists, pt (including spinal adjustment), OT, a number of medical specialists, psychologists, physiatrists , psychiatrists, accupuncturists, nutritionists and few ists I haven’t even heard of all of which are in one of the nations top academic medical centers. There is little they don’t have the ability to sort out from the physical, mental, spiritual and environmental. It is the model of pain management. They even have an immunologist from Kings Collge (thats gotta be worth a laugh)
ALL excellent advice and the starting point of any treatment:
TJ
Justus, the above is pretty impressive, my apologies, Dr B seems to have it all covered, I’m surprised pleasantly, I’m more out of touch than I could believe. That said like to think you might address first mentioned before spending. Thanks tj.
Aiculsamoth, I agree with you. A large part of pain control is getting control of your life in general. Protect yourself first! And one of the most difficult things to do is adjustments to influences, be it changing jobs to reduce stress or changing friends to reduce emotional drainage. There really are people out there who are toxic and it really does help to limit contact with them. I learned this while my husband was dying of cancer, my life was made easier by simply ending association with certain people. Was it easy? Of course not! Did it help in the long run? Absolutely.
You and I disagree about meds, tho. I think meds are a critical tool to be used. Not a cure but a tool. I think one should never give up on finding a chemical to help adjust what’s going on in your body. Bodies don’t always want to work and meds can help adjust that for the better. Of course I also work in a pharmacy so take my opinion with a grain of salt.
Justus, I wish I could tell you this will all be over for you. Like having a broken leg I wish I could tell you to wear a cast for 6 to 8 weeks and then do some physical therapy for 2 or 3 months and you will be normal again.
Chronic pain isn’t that kind. It’s nasty and mean and largely not understood. I would never, ever imply that it’s going to be fixable when as of right now you don’t know exactly what it is, what’s causing the pain. As TJ mentioned the original cause could even be healed and the chronic pain is a separate issue that developed.
There are so many variables it can be overwhelming. Someone mentioned creating a flow chart of everything you’ve done, I think that’s brilliant. And I suggest charting the pain. How bad is it? What did you eat! What was the weather? Who were you with? How was work that day? You might be surprised at the connections you find.
Justus, I can feel your frustration and your impatience to get to Dr. Burchiel and “get the show on the road”. Do you have any idea of a time frame for when that might happen?
You’ve received so much advice in response to your questions, that it can all seem overwhelming. I’m thinking that maybe what’s going to be best for you at this point is to consider your lifestyle, maybe make a flow chart for Dr.Burchiel, and start working on the lifestyle changes that people like 'moth have suggested.
Really, you haven’t offended anyone, but I think that perhaps there’s not much more to say about your situation, except maybe offer false hope. And as a community, that is one thing that we try not to do: we aim to be accurate, realistic and well-informed. But we don’t tell people things will be all ok and hunky-dory when we aren’t sure that they will be. We will, however, always offer the hope and experience that when the going gets really tough (and they are for you) that there are things that you can do to make things a bit easier for yourself.
TJ and I visit almost all of Ben’s Friends thirty communities every day, and we read a lot of threads. This one is remarkable in the amount of wisdom and support and kindness that has been shown and shared. On most discussion threads, advice and support is rather diffuse and general in nature, but in the case of this thread, every bit was gifted to one person: Justus.
What is it they say? “When all’s been said and done, a lot more was said than done.” I think the best thing for me to do here right now is to close this thread so that you can take a little time to contemplate the generous support you’ve received here.
Seenie from Moderator Support