When pain last years; daily for years? mental coping skills

[veelighted7]

Hi. I have been living with CP for almost 3 yrs, from a whiplash injury. I have high levels of pain, daily. I have a few hours in the morning where my pain meds work, but then as my day progresses, the pain comes back. I have to go to bed and sleep til better.
I am relatively young and wonder, will this go on for the rest of my life? How will I cope? How will I have a normal life; travel, marry again, work?

I do go to Yoga, CP group to talk. I have been forgotten by my family because i look normal and they think I have let pain win and have give up on life..ironically, I have not let pain win, I'm still here! I have to be another person with my sister because she refuses to discuss it with me and does not care. BUT for me it's more than difficult, it's REALLY DIFFICULT! it goes on and on. I can't work although I earned my Bachelor's degree 1 yr before my accident. I am afraid to enter a new relationship for fear that i'll be seen as weak, etc.

I would love to hear how any of you cope. How do do with the idea of this being "It" for the rest of your life?

Blessings, Vee

[Elizabeth43]

Hello there,  I really empathize with all your health problems.  Mine seem minor by comparison though I've had a lot of pain.  (sinus surgery, facial pain, and now a very bad toothache for 2 weeks and my dentist doesn't want to pull the tooth - I'm just hanging in til monday and I'm going to ask him again to pull it).  I had the sinus pain for 2 years before the surgery, so I've had chronic pain for about 3 years now.
In answer to your question about what to do to help yourself with chronic pain.  These are some of the things that have helped me:
1.  I think this forum is really good because you find people who understand.  That helps me.  It's also good to have someone to talk to.  Luckily I can talk to my husband, he's very supportive, though I have to be careful not to overdo it.  He can only empathize so much.
2.  I've found some books that have helped me, (Since I couldn't do very much because of the pain I decided that I might as well read about how others had been helped). that you might be able to find at your local library:
a) "Full Catastrophe Living" by Jon Kabat Zinn.  Also his meditation tapes and body scan.  They're available from his website.  They are good when the pain subsides a little, but I find it hard to concentrate when the pain is bad.  They are from the Stress Reduction Clinic at the University of Massechusetts medical school, for people with chronic pain.  One thing they focus on is breathing and I've learned from them how to relax into the pain and not fight against it, which has made it easier for me to sleep.  They also teach you to live in the present moment, and deal with anxiety and worry.
"Meditation for Beginners" CD by Jack Kornfield.
b)  Dr. Bernie Siegel's books  "Love, medecine and healing"  (I think that's the name of one of them).
c)  Norman Cousin's "Anatomy of an Illness."
Those are 4 that I have enjoyed listening to or reading and found helpful.  I've ordered a book on self hypnosis from the library as well.
3.  Prayer is good.  The Bible is full of stories and quotations of how God wants to heal  people.  And people in the medical profession have documented how prayer helps.
4.  Make sure you get enough rest.

[Tuckamore]

Hi Vee,

May I say the obvious? You've come to the right place. Everyone has offered you support and understanding and I agree with all of them. We do what works for us.

I too have moments that I doubt the severity of my diagnosis. Sometimes anger sets in again and I get going....but no longer very far or very fast before reality jerks me back.  

My father is in the hospital and very ill so my Sis and I did some shopping yesterday for things he'll need when he returns to my home. My Sis like a few other members of my family don't get my pain as I too "look normal," what ever normal is. Today I am flat on my back from the little shopping I did yesterday. Unable to even drive to the hospital to see Dad yet today. I am coping by talking to all of you, taking my meds and laying on a heating pad. It can be overwhelming. And I agree with the member that said it is lonely.  

I still travel though it takes me longer to get to where I am going. I've found some products that produce sustained heat, I stop often and I let others drive when need be. You just need to find what will work for you.

A person that looks at your pain and limitations and not you the person is someone you wouldn't want to be involved with anyway. Someone will love you for you. My husband often has to pick up the slack for me. But I find ways to help him too. I am so blessed that he has stayed with me through all of these painful years following my MVA. So don't hide. Get out when you can and you will find that special someone. Maybe there is a support group in your area that you could join.

I find that my faith helps sustain me. I see my physician (a D.O.) every few weeks for a manipulation which helps my pain. If you don't see a DO you may want to consider doing so. A DO does gentle manipulations to assure your structures are in alignment (no not a chiropractor) and without that I could not function at all.

We're all here for you. Chat with anyone of us. I'm sure we'll all welcome a PM from you. I know that I welcome all PM's. Hang in there Vee. We can relate to your concerns.
  

[6FT2]

hehee, *blush* we seemed to have gone a bit off topic.  I have to totally agree with nick30.  Pain does seem to go into "remission" and at times I even doubt the diagnosis and then ... to quote nick30 ... *BAM*.

I think it all comes down to the power of the mind...Mind over pain.  If you think about it, if the pain is not causing any "damage", then you don't have to listen to it.  The body doesn't realise that you already know that there is a problem and that it should stop bombarding you with alarms.  

Some pain can be overwhelming tho, so if it gets too bad, take some pain pills (but be carefull to overdo it as a lot of pain-pills can have negative side effects when used for an extended period of time).  Try to not do the things that hurt you that much and if you HAVE to do them, try strapping the affected area to hold it stable.

[nick30]

This started off as a post to come up with ideas of how to cope with our pain. I didn't answer that in my 1st post so i'll try to adress it now.
1st of all, thanks for the question Vee.
I'm not sure that I(or we)cope well all the time. It would be great if pain levels were fixed. then we could find the required level of medication and live happily ever after.
Unfortunately we are all on a terrible roller coaster ride.
The second we think we have things under control BAM, things get worse.
that's what it's like for me. I constantly get lulled into thinking things are getting better for some reason.
I guess that means that it's really the mental side of it that matters the most(for me anyway).
It's a constant struggle. How do we stay on top?
I'm not even sure I can be all that specific.
I have tried to take care of my general health over the past 6 months or so, much better than i previously did. it hasn't lessened my pain but it has helped me feel that i can actually accomplish things, even if they are simple things that most people take for granted.
anything that we can do to help ourselves get into a more positive mood is worth doing i guess. it's easier said of course.
I'm afraid to say that at this time of night I'm fresh out of ideas.
Thank goodness this is a forum with many people on it.
someone help me out here. My mind is blank.

[6FT2]

Ouch!  That sounds painful.  Amputation does sound a little drastic but then again, who wants to walk with a stiff leg.  I sometimes wish they would get some real progress in the "cyborg" department so I can have all my joints replaced and get it over and done with...hehe... (Yes, yes, I know... be happy with what you got)

Don't feel bad tho, I tend to trip my self up very often ;D.  I have heard somewhere tho, that people with Marfan's do tend to have problems with "Proprioception"?  Where your limbs are in space in relation to your body, but still... it feels just as cluts-like when I do it.  Even tho I try to nurse my knees, every so often, I still knock them on the corner of a table and with Chondro, you can't believe the pain from the slightest tap!

At some point, I will have to get my wrists fused as well.  The last doc said I would be lucky if I reached forty without complications.  It wouldn't be all that bad tho, seeing as they are already immobilized by carpul-splints but then I would never be able to play electronic keyboard again... not that my wrists allow me to do that at the moment either but still.

[kiddthekatt]

  I really feel for you two. I took a fall on Thanksgiving Day 2006. I fell going up my steps(duh!) and landed hard on my right knee. By Feb. 02 2007 I had to retire from my job because my knee was shot. Ihad a partial knee replacement on March 22, 07 and in 8 weeks on May 17th, I had to have a revision. Seems the implant broke. 5 days later the spacer in the implant shot out and lodged in the medial part of my knee.

   I changed surgeons and had a total knee replacement on Oct. 22, 07. And I have gone down hill from there. I really thought that having the the first surgery would be a quick fix, ya right!! I still have problems with that knee today. My new surgeon told me that the only 2 options open to me now would either fuse the knee at 5% flexion or amputation. Quite an option huh?

   I have to take good care of what I do have left, as far as joints ar concerned, because I refuse to have any more rteplacements period.

gentle hugs
Angel

[6FT2]

Yep,  I have bilateral patella-alta (Both knee caps sits too high up).  I have Chondromalatial Osteo-Arthritis.  I have dislocated my knees so many times, it just isn't funny any more.  The last time around, I was in a closed reduction cast for two months and was stuck on crutches for a further two.  Seeing as I lose so much time everytime it happens, I might as well go for 6+ months off for surgery but the docs says that I am too young and that they are afraid of complicating the situation even further.

Every time I dislocate a knee, the doctor makes a statement of "We will wait for you to recover and then we HAVE to operate".  Ugm...well...  When I finally recover and they take a look at my knees again, they are at a loss.  The one specialist told me and I quote..."I seriously don't know how to help you".  

Apparently, I will lose a LOT of mobility in my knees if they attempted to fix it.  They only picked up the problem when I was 16 and by then, I was in the middle of a growth period, so they could not operate as further growth would recreate the problem.  I was told to go for surgery by the age of 21 but that never happened, due to the extent of the problem by that time.

So now, I just try to avoid stairs, carrying heavy objects, walking long distances, standing for extended periods of time and cycling.  The last doc I spoke to said that he would only consider surgery if I start to have chronic dislocations (As in once a month, as apposed to every six to twelve months).  So it seems like surgery for me would rather be a last resort fix to stop "the wheels coming off the bus" rather than giving the bus a smooth ride...

[ChronicPain1]

Sounds like you have similar problems, I have off-line kneecaps that basically shredded all my cartilege and a Lateral Release could not fix. The options to fix it are too extreme and would require 6+ months out of work, AND I live on the 3rd floor in my apartment. No way I could manage that now.

[6FT2]

ChronicPain1...

I feel your pain ( Pardon the pun ;D ).  As it is, I feel like an old man.  My joints pop and creak and my knees are also shot to heck and gone. The worse is the fact that I didn't even do things like BMX or weights to have busted them up in the first place.

[kiddthekatt]

  I Also can relate to all of your stories. I set my alarm 30 minutes before I get up so that I can do gentle stretches just to be able to get up and walk. Before I leave my bed, I take my a.m. cocktail of meds. As for my family I am so very Blessed to have a family that care and they all try to understand, they even research fibro/cfs so that they can understand more. I lost friends over this disease, but I figured if they were really friends then nothing could have gotten between us.    But, the few friends that refuse to leave are my dearest friends an I love them dearly.  

(nick30 wrote )

i just don't have the strength or energy to explain it to these people anymore. i used to but in the end it's just human nature to many people to not think about other peoples problems. things are a bit different here, we understand and we are willing to listen and help in any way possible

Those words made me feel so good. Because I know that it's true. MH has been Heaven sent and I am forever grateful to all here for their kindness and caring.

gentle hugs
Angel

[Cindee56]

I can also relate.  I have pain from several different problems--arthritis, DDD, herniated and bulging discs in back, knees, fibromyalgia.  It's horrible.  Not only that, I cannot take narcotic pain meds or NSAIDs because of a kidney problem and ulcers.  So I really have nothing to help with my pain except muscle relaxers, lidoderm patches and sleeping medications (which don't always work either).

I have been through the whole family thing also.  I'm 53 years old, and I have numerous health issues and would like to spend time with my sisters, but they don't get it and they don't seem to want to talk to me.  My parents are passed away, my son is out of the house, and my husband is very quiet.  I have no friends because they also have abandoned me because I *bring them down* and I'm *a baby and a complainer* according to them.

Just letting you know you are not alone.

[ChronicPain1]

I guess I hold out hope that my pain will be solved one day. My knees are basically shot, and it scares me that I'm 23....how bad will it be at 40?

[Red931]

Welcome Vee,

I have the same problems that you and the others here have. I wake up in pain, take my pain medication and just as you said, it works for about six hours and then the cycle starts over. I also use other methods to deal with it as you do and take medication to get to sleep as well.

I can't seem to keep myself out of the Operating Room either. I am trying to cut down on that issue first. LOL

As Nick pointed out: Stick around and we will all work it out together.

Day by Day

[6FT2]

Hi there Vee

I get what you say about your family.  My family had always made me feel as tho I am "weak" or "whiney" and never had any sympathy for my pain.  When I eventually found out, about two years ago, that I am absolutely not weak nor whiney...and most probably totally the opposite for putting up with so much pain, I thought it would change but it didn't...not overnight at least.  It had taken my family two years to finally realise that I have been living in pain for most of my life and it is still very difficult.

My father also used to think that I am giving up on life...but that's not the case...I am trying to preserve my body and stopping it from deteriorating too fast.  

People don't understand exactly what you are going through unless they get a taste of it them selves and even then, it fades quickly.  My dad now has osteoperosis and although he doesn't admit it, I can see that he is thinking a bit differently about my situation.  But then again, he is also a hard head and still carries around heavy objects despite his bad back and risks of further injury.

Me on the other hand...  I can't take those risks.  I am way too young and my body will still have to last a very long time.  What I do today will almost certainly dictate my quality of life in the future.  

My sister also still refuses to discuss it or even accept it.  She also refuses to go for tests even tho she has similar traits to me and could well have the same condition, albeit in a less extreme version.  She is ignoring her health in my point of view while I am doing everything I can to preserve mine.

It sounds lonely and impossible but in some ways, you have to prepare your self for the fact that you are the only one who fully understands your situation and am able to take care of your self.  In the end, you are responsible for your health and quality of life and no one else.

As for marriage and work?  Love and marriage should be about YOU and not your body or your strength.  Take it from a guy who has to stuff his ego into his pants everyday and sometimes ask a waitress to open a bottle of coke for him or get his co-workers to carry his pc to his car ;D.  I will one day have to face the fact of asking a future girlfriend or wife to do all kinds of manly things...and I need to swallow my pride now, so I can do that and not be stubborn about it and hurting my self in the process.

Oh, I learnt to cope with the pain...but even after years of living with it, it's still no easy feat.  

Strangely tho, no matter how painful it gets, I am still somewhat in denial over my diagnosis.  I keep on wondering if the doctors hadn't made a mistake and if I am not maybe just being weak and whiney ... then the pain sets in again and I am persuaded...  just to have it fade again and start doubting again.

I hope this has helped in some measure.

Keep well and Keep strong...

Blessings

[nick30]

Hi Vee,
everything you've said is instantly recognisable to most of us on this forum.
the answers to your questions are long and involved. but stick around long enough and you'll get your answers.
i guess we all have to face a new reality. one where people w/o CP simply don't understand. we aren't the only missunderstood people in society but we are much maligned because of the type of medications that are required to treat us.
i just don't have the strength or energy to explain it to these people anymore. i used to but in the end it's just human nature to many people to not think about other peoples problems.
things are a bit different here, we understand and we are willing to listen and help in any way possible.
thanks for writing, i'll try to get back later and try to answer some of those questions.
hopefully someone will beat me to it.
take care
Nick.