[(JD)]

<font color="darkblue">[b] I have legitimate pain. What I mean by that is, physically certifiable, MRI-able, viewable reasons for and causes of pain. Physical pain. I also have psychological pain, also with "legitimate" reasons for it.

I am too complex a being (as in a human being ) to separate the two. One influences the other. The mind-body connection is more than a visible connection..it is enmeshed within my essence.

What I have begun to work on... what I will strive to do with the great assistance and leadership of my psychologist... is to reduce (to elimination if possible) my response to pain... reduce ?? how to say this... reduce the contributing factors that add to my pain.

Let me say that I don't "hate" many things at all... but two phrases that are misunderstood come very close to that feeling for me; these are: "psychosomatic" and, "it's all in your head." In reality, there is nothing wrong about either of these... but the negative connotations are huge!!! My T doesn't use these words... I won't either ...

As I work on all this, I will also work on finding suitable replacement words and phrases... which mean the same truth, but don't carry the negativity.

Pain is in the head...because that's where the brain receives the message and interprets it and says, "PAIN!" Part of my problem is that the nerves are firing and sending all sorts of pain messages... none of which I want... and the brain responds with PAIN PAIN PAIN!!!! It becomes cognitive at that point. Some pain is also physically induced. A vertebrae chewing into the spinal cord or root ball hurts! Bone spurs hurt. Joints that grind hurt. Bones out of place, hurt.

Being in pain and enduring flares of pain and/or fatigue and tremor affect me psychologically. Having lost a career and quality of life hurts psychologically.

That my body is a "psychosomatic" one is not unscientific IMO We are ALL a combination of mind and body (and spirit also.) Anyone who thinks the mind doesn't affect the body has the thinking of a crib baby. Actually, even a crib baby knows this, but can't verbalize it, I think. LOL And likewise for anyone who thinks the physical body doesn't affect the mind.

I do not know this path. I am unsure that I'm even correctly phrasing these thoughts and concepts. (Stick with me and I'll drag you along the learning curve on this one )

My ultimate goal remains to reduce my pain. I have reached beyond the why I have chronic pain. What does it matter? There is no reason to find any fault or blame. I can only care to reduce it so that I may live life with quality.

If that becomes mind over matter, then so be it!

[FaithisAlive]

Interesting indeed....I am a firm believer in the mind/body connection...

What you say makes complete sense to me....I'll be looking forward to more of your thoughts on the matter...

Faith

[pooh_ac]

As a Hospice nurse I can tell you for a fact the the mind and the body do affect each other! It is unreal how much helping a person deal with the "mental" pain can help with dealing with the "physical" pain. I have also noted if you try to fight the pain physically, ie tense up, grit teeth etc the natural things we all seem to do so we wont be "weak" contribute to this also.
BTW my biggest pet peeve is those who state to others "it is all in their head", well it may be but they need help for that too!!!
sorry

[(JD)]

Yes, it's a terrible phrase and most who use it mean ill, but if I didn't have a head, I wouldn't feel pain

Also, with physical pain, we tend to hold our breath! The physical response to lack of O2 in the muscles, is more pain!

Our thoughts change what really happens. They are not just reactions to situations.

[bflatgary]

To hear someone say, "it is all in their head", only tells me where my headache is.

What is in the head, in my opinion, is how we manage the pain. I was diagnosed with RA a little less than two years ago. My medications have helped immensely, but the problem is not gone. I have good days and bad days. I am learning to make choices that help me manage the pain.

I own and operate a business. My pain situation will help me decide what my business activities are for the day. If my feet are swollen, I will not be out in the field. I will handle things by telephone and internet. If I am having hand/wrist issues, I will contract out the manual side of production.

I avoid situations where people will "pity" me, because that itself will create more pain. The best way to live normal life is to live a "normal" life. It is easier said than done, and I am still learning.

GW

[(JD)]

I have already experienced some postive results from trying to change (reframe) my thinking/mindset.

My T desires that I continue to reduce my stress IRL, meaning reduce my reactivity to events of daily living... and I'm really trying to do that... and trying not to double think about it too! IT ISN"T EASY

But I did not have a pain flare these last few days, where I think in the past I might have... I'm taking that as a positive result!

[(JD)]

<font color="blue"> I've just begun a thread in PTSD about doing well... and the house painter who is pushing my buttons. Normally, as my T reminded me, I would have been upset and set off into a flare...

of course my T has been actively working with me for nearly 20 years so it isn't like an overnight success...but then again... Just over a week ago I registered with Dr Martin Seliger's positive psychology research... and for a week I worked on a project for it...

Regardless of WHAT has caused this positive response rather than a pain one, I WILL TAKE IT!!! Now, to duplicate the results. oh yeah, the painter has to finish my house!

[Boopers]

Hi Sky,

It sounds like you are doing positive things to help with your pain and that is great. We all probably would be better off if we used mind over matter with things. It's a matter of taking charge of your own life.
Good luck to you and glad things are working better for you this way. Looking forward to more of your writing about this.
Linda

[(JD)]

<font color="blue"> SO far, so good I am doing really well considering all the stressors about me.. some positive and most negative. I'm battling fatigue, and while I don't wish to lose the battle, it will be interesting if I do have a fatigue flare, what the pain level will do. Often it also rises.

Of course, with fatigue, I spend more time in bed, and that, alone can increase the pain as the muscles need not be in any one position for long periods of time. I also have more trouble stretching even to my own limitations (muscles that is) when I'm fatigued; I don't have the strength.

I slept Sunday night and then 6 hours after I saw T on Monday,and then Monday (last)night another few hours. I'm still recouping from Sunday's outing at the MS EXPO. I'm trying not to succumb, but also trying to rest more.

I am having trouble remembering to take my pain med. Brain fog (fatigue) is part of that, and depression is another. Won't be very scientific if I can't keep the basics going.

[(JD)]

<font color="blue"> Though it's been 2 months since I posted this thread, I have not forgotten. I think it will be a long process still.

Yesterday was the most trying, long day of "work" that I've experienced since my injury and had guidance on how to manage pain and stress.

The powers running the volunteers of the Superbowl...well, let's just say that she MICROmanages everyting. EVERYthing. NOT good for someone with pain issues and esp for PTSD and disability needs. NO accomodations, she doesn't have a mode for that (yet.) I ran into the wall a few times with issues..

And the day was a full 12 hours. I refused to do anything physically over the line such as lifting, pulling, pushing. BUT I did do a lot of standing, and walking. I am in pain for that. HOWEVER I am not in level 10 pain, which even a year ago, I would have been. I attribute this to mindfulness DURING the event.

I still had trouble remembering my pain med. Water was NOT readily available as they said it would be. I drank my supply too quickly with the idea more was there. I was over a team of 4 and let them take their breaks before I took mine (I will NOT do that again these next 2 weeks.) and thus ended up on the short end of the stick, esp when 2 of the workers did not return at all.

I wasn't vocal enough with my needs. Even though I DID remind 2 of the professional staff of my disability needs, they of course weren't able to make it a key element of remembrance. I was reprimanded in front of the entire Captain's team for something that was disability related. Though she ended up saying WELL.. OK...that was hardly expressing to me that she had learned anything from the experience. and was embarassing in a way, to me.

ALL that could have increased my pain...due to the stress.

I had discussed with my T about enjoying the moment. I worked at not getting caught up in the mechanics of it all (so many ppl, so many INCOMPETENT people, so many LAZY people, so much to do, so disorganized methods... filing, finding, walking, fatigue, pain etc) BUT on the moment: HEY I was enabling a great sports event to take place for 120+thousand ppl to enjoy with millions more to watch etc...and I was HERE in the place! I have memorabilia out the yin yang and more to come! I've helped others have a good experience also!

So that keeps the stess down. My mantra was :Nothing today will over stress me. It worked most of the day

So, even though my body ached and pained, I went home, took care of Caleb and Namaste (my bunny) took a hot hot shower and went to bed with 3x the pain meds and ice packs... and slept! After 17 hours of rest and sleep, I went to the picnic today (for Orange Bowl Ambassadors) and ate free food, played a water balloon game (Ouch, water when thrown is heavy and hurts so I won't do that again) showed off Caleb to the park visitors, and then came home and came here to PC.

I'm fatigued and in pain, but I am managing. It has to be part due to the mindfulness of yesterday, and the psychological frame of mind for today.

What do you think?

[pooh_ac]

I do not know how you do all that you do You are an inspiration to this old broad
After this is all over I expect an extended chat
TC and dont let the evil micromanager get you down

[Zorah]

Hi (((((_Sky)))))

We just wanted to say what an important thread this is !!

We try to manage our pain, in the way you are describing

& we've found this thread really encouraging

& a validation of what we are trying to do

[(JD)]

<font color="purple">
I am doing well, considering.

My physical activity has increased 100 fold now I think, due to the superbowl. I am having to really work at incremental actions and segmenting my life. Some day to day stuff has gone by the wayside, however I am becoming successful with eating better now.

Mindfulness is important. If I allow myself into the moment of the activity, this is good and can be fun, but if I totally forget the reality of my disability (discounting the pain completely???) then I have backlash.

Today is the biggest day yet, and already I've been up a few hours NOT GOOD. Blame it on puppyhood lol Caleb doesn't realize I needed him to sleep in!

Today can be fun if I allow it and look for it, manage my stress and pain.

That's my goal!

[(JD)]

<font color="blue"> Superbowl is over and not a moment too soon. The lack of appropriate, and might I say legal, accommodations for handicapped did not go unnoticed by me! I am too fatigue to compile an after action report (as they call it in the military) but it will be on it when I do write one.

It was easy to become caught up in the moment and forget I was disabled, only to find myself hitting walls along the way. I really did ok, considering, but wish to do better next time (3 years?)

This week has been one of trying to recover a bit. I have slept more than normal, and still wake up tired. I know I am writhing in pain during sleep so it isn't very restorative. Plus, the pain increases and the effects increase when I don't take enough medicine to calm it as best I can. This often happens during the night, as I need to wake around 3 am and take a dose.

My sacrum is out and the pain has increased incrementally, I believe with the swelling from the long term "outage."

A situation occurred today: I finally went to my MD to pick up scripts. I was due a new pain med script on the 28th of January, but was too tired and stressed to even manage calling the request in! Tuesday I called (from T's office) and today I went to pick the prescriptions up. While there, I asked if I could have a shot of Toredol (anti inflamation) because of the pain flare.
They said the MD would see me after she sees all her other patients (meaning at the end of the day.) My MD has NO allowance for any "walk in." They told me I had to schedule my visit. I told them I don't schedule pain flares.

I left, to go to PT and hopefully obtain a bit of relief, which I did, but not complete in the least. After sitting for an hour at Ts, and then driving home, and then with activity of the day... the pain is flaring.

Now, I post this situation because how I respond affects my pain level. T helped me again to realize that I don't need to heap more stress on top of my pain, thus making it worse. Of course I agreed. However, my idea was to never ask MD for a shot again, and just use the ER instead. T surely wishes me to give MD more tries, and to ask each time.

Ok. I really don't want to go to ER each flare... one reason (sorry about this thinking, I will work on changing it...) is that I had a good experience the first time I used the ER for a shot, if I go again it might not be that way, and then I wouldn't have the "backup" plan... it's a psychological support I need to know is there for me.

So I need to always ask the MD first. I need to know the ER is there, and even if each experience isn't the best, I can get help there. Stressing over the issue only makes me worse. I am in pain. My sacrum is out again. If I reach a point where I'm not able to manage my pain, then I can go to the ER. I don't have to try and work through such intense pain. Yeah, I have a back up plan.

[(JD)]

Well, management of anger will help also to curb some of my pain. I don't really vent it, and I don't really stuff it... I try to live with it (the anger) and I don't know how else to deal with it right now. T says that it is a difficult skill for those with PTSD. So once again I feel like I am having to do something that I really can't do...and must be perfect at it in very short time.

I won't elaborate much more here, as I can't handle another thread lock right now, and I don't know how long this thread really is, plus, it seems I'm the only one posting, so it looks like it's "my" thread and no one wants that.

TC!

[Larry_Hoover]

I don't understand this "thread lock" concept, but it doesn't sound very supportive. I've been following your posts, and I'm grateful that you made them. I just haven't had anything to say. My functional threshold just hasn't allowed me. I'm in a new physiotherapy program, and it just wipes me out.

Lar

[(JD)]

Yes, well it appears to have a limit at 100 pages, so this is far from that anyway

I'm sorry your physiotherapy program is wiping you out, and hope that you reap benefits of energy for doing it soon...

I can't progress in PT, for to do that would mean stopping everything else in life...with no promise of gain or even permanent gain level.

I do have to work on my anger though. I don't feel that PC is the place I can do this though I might ask in self help, with drclay...

[(JD)]

<font color="blue"> It's been another few weeks and I'm facing another pain flare. My sacrum is badly out (it is never really "in" where it belongs... muscles/tendons won't hold it there) and this time it is pressing on my sciatic nerve down my left side/leg. grrrrrrrrrrrrrr

Ok.. I've thrown ice, ice massages, heat pad, hot baths, hot showers, cold a/c, rest, stretches, physical therapy x2, and I hope to either get a shot at ER tonight of toridol and/or ultrasound tomorrow in PT.

Part of the problem as to why: extra activity, extra stress. I've been pushing physically since I fell in puppy class two or three weeks ago. Then add the actual training of the puppy, way over my allowances of physical activity (but he's learning so well!) Then add the extreme stress of the dog food poisoning and the having to take puppy to vet and give puppy meds twice a day (getting down on his level)... and from crying and allergies I have bronchitis too.

What I will do more: meditate and try to ease the muscles through my calming... take more pain medicine and try to work through it this way rather than go to ER... maybe after a few hours I'll have a sip of cognac to help try and relax the spasmed muscles.... drink more water! I haven't been doing that.... not watch news... not stay in one position long.. move every 15 minutes... I don't think I need to call T tonight...

T warned me last Thursday of doing too much. Monday he really told me to ease back and stop and take care of myself.. which I did (even went to movies Tuesday evening to escape)... and I'm technically on "rest" mode... and haven't done much at all (in addition to the junk I had to do) I haven't even followed up on returned call from lawyer ref the class action suit on puppy food.... breathe... breathe... this pain won't kill me....

[(JD)]

I am just exiting the latest pain flare. My PT and T both remarked how well I'm handling them of late. I have refused to try to "put up with" the increased pain, and rather than tough it out, I humble myself and go to the ER for a anti-inflamatory shot.

This latest flare began to develop Tuesday evening... and I did two physical things Wednesday to exacerbate it (squatted down to show housekeeper how to remove the head of the vacuum, picked up a light bin of recycles and dropped it over the gate outside) ... and by Thursday 2 am I was in ER waiting for the shot. It helped me get some sleep, and to my PT and T the next day. This weekend, though I have an enourmous list of things that need to be done... I won't. (Because I really can't.) This includes taking care of the washer which quit drawing water after the housekeeper used it (for some reason.) And that goes towards the top of the list now too

Well, that's enough about me, thanks for caring to read!

[bebop]

I hear ya sky! it sucks not being able to do things that really need to get done. I still have many boxes left to sort and unpack here but I can't do them. I am also in a bad flair and can't see the dr til tuesday. can't afford the er. deductible is too high. sigh

[(JD)]

Oh my... I have boxes I never got unpacked from when I moved 8 years ago! I can't let them worry me, I have too much other stuff to bother with.



((bebop))

(((pooh_ac))) ...tugging on rope, still there!

[pooh_ac]

Gentle HUGZ

[(JD)]

[b]<font color="darkblue"> I'm in increased pain tonight. Ok. Trying to realize some pain lessening techniques that I referred to originally.

Breathe. Release the tension. Release the fear of increased pain, beyond what I can handle. This pain won't kill me....

I haven't figured out why I'm having problems tonight. I pushed physically today, but I have been on and off, in attempt to increase my tolerance in preparation for the trip to NM. Even with increased activity, I am careful to hold posture, not push pull lift etc... more than the 5 lbs I'm allowed.

Hmmm I did squat and reach... pulling some tiny weeds out of the gladiolus area.

I've taken a hot tub, laid in bed with ice packs, done stretching, increased pain med...tried to divert my attention from the pain...now I'm writing in attempts to recall something I may have done. If I can realize if I did anything, that would give me clues as to what exactly is going on with my back (where the pain eminates)... but nothing else comes to mind. I had a boring day, as usual (Maybe r o t f l put my back in spasm? lol)

I sat too much. Not at the computer... but at the table. That is all that is different.

I'm going to have a hot cup of 1/2 caf coffee... and then do some meditation and relaxation ... more ice or hot tub (can't decide which right now...but puppy loves to play when I'm in the tub (he drops his toys in with me) so ice is best ??? hehehe)

Oh... the TENS unit... that will help relax the muscles around the bones that are out of place (the pain ...) arrrggh. I need to do that too.

Ok. I haven't been in a pain flare in a while. That is good. I have been very stressed the last 2 months...and have managed my pain quite well... this is bound to happen... I'm working at it happening less and less.

Hopefully, I will get it under enough control to get some sleep tonight.
OH! I just remembered another thing: I didn't have physical therapy Thursday. I was having an eye exam and they ran late so I missed PT. Bother. I really wish missing one of 3 appts each week wouldn't have such results. I wish I could remember that if I miss any PT that I just can't do anything physical till after the next PT appt. I sure wish I could recall these things. Oh well, I can't and I don't so I do the best I can.

TTYL

[tranquility]

Hi Sky,

So sorry you are in a flare. It is so hard to pin point what causes it. Sometimes it seems like a little thing. What struck me is sitting in the kitchen chair to long - I think that could be a potential big trigger (I don't know if it is hard or cushioned, etc). The PT too.

I'm still trying to adjust to learning my limitations - it sounds like you have a really good handle on it!

I hope you come out of this quickly - sending healing energy your way.

Tranquility

[(JD)]

Thanks tranquility. Well, there were many little things that added to this flare, I'm remembering. And it's that I couldn't keep it all in my mind that help lead to my being overwhelmed. But I'm not sure I could have totally prevented this flare and I'm not going to dunn myself as though it was my "fault" or anything. It just happens sometimes.

I'm still adjusting to my limitations... but reality sets in quite quickly with pain flares. I had to totally drop all my plans for today, and possibly tomorrow's too. I have to rest. It's not easy to rest in this situation, as the pain interferes plus I have to war against the anxiety of not getting things done, and wondering if I allowed enough time to get everything done on "time"... like ...I need to plan / schedule my pain flares??? Of course I can't.

I didn't even get to the pharmacy and fill the script the ER doc gave me. Just too much to get done. I must tomorrow do that one thing if nothing else(but of course that 'one' thing involves getting dressed, driving, parking, walking, waiting, and returning.

I need sleep. Only slept 1 hour last night. I did nap after PT and T today, for 2 hours or so?