KNEEtalk

The WAITING ROOM => Emotional/Spiritual help and encouragement => Topic started by: Lana1 on November 05, 2012, 10:13:25 PM

Title: Can't stand the pain anymore
Post by: Lana1 on November 05, 2012, 10:13:25 PM
I don't know guys how you are coping with pain but it' too much for me and it' just getting worse when I thought it couldn't get any worse. I can't live like that anymore. :(
Title: Re: Can't stand the pain anymore
Post by: travelthomas on November 05, 2012, 10:25:47 PM
{hugs}

I wish there were something I could do to make you feel better.

I've always tried to meditate on someplace that makes feel good.
Title: Re: Can't stand the pain anymore
Post by: Lana1 on November 05, 2012, 10:32:08 PM
Thank you
Hugs to you too
Does meditation help with your pain?
Title: Re: Can't stand the pain anymore
Post by: travelthomas on November 05, 2012, 11:43:03 PM
Thank you
Hugs to you too
Does meditation help with your pain?

Distraction is always good when it comes to pain.

When I traveled to India I was afraid I wouldn't get any sleep, because I hurt so much in bed (I always have). I completely forgot about bed pains, and even slept on the overnight trains. The worst night I had in India was trying to sleep upright on an overnight bus. That's one thing I cannot do.

Because of Fibromyalgia I could never sleep in a hammock, I would wake up in horrible pain that would last for days, mostly running up and down my spine making my neck stiff, so I couldn't turn my head. I don't know why, but I slept in a hammock in India without any pain. It's actually a funny story, because the woman I was traveling couldn't sleep, because she thought we were going to get killed, and I didn't care about that, all I cared about was a good night's sleep.  ;)

I've had a lot of guided meditations in my life, usually with the guide with me, but you can use recordings, like YouTube videos.

I'm in a terrible place for that now, because of the people care taking me, but I was able to have a good friend come in and guide me through swimming in the Caribbean meditations. I love to swim in warm oceans.
Title: Re: Can't stand the pain anymore
Post by: Lana1 on November 06, 2012, 12:11:11 AM
Are you in pain now? :-(
Do you think you felt better in India because of a different climate?
I live in England and my knee feels terrible here, but when I went to Kazakhstan in the summer, my knee was so much better that I could jump and I could feel it healing.
Title: Re: Can't stand the pain anymore
Post by: travelthomas on November 06, 2012, 12:32:08 AM
Are you in pain now? :-(

Just my back, knee, and this crawling sensation under the skin going up my shin.   ;)

I grew up with pain. I thought it was funny as a child when my hands would lock shut on things I held too long, and it was painful to open my fingers. I think when you grow up with it your mind learns to cope. The pain never stopped me from doing what I wanted though, and I learned how to travel with breathing problems. Mexico City, and Calcutta game me terrible sinus infections, but they cleared up as soon as I got away from all the pollution. It was hell growing up in the Los Angeles area, but as soon as my family moved to Ventura, on the Pacific Ocean, my breathing really cleared up.

The worst part of Celiac Disease was the pains in my abdomen. There were times it felt like a knife sticking in me, and someone twisting it. Those went away with going gluten free. There was this time the top of my head went completely numb. That was really strange, because it felt like I was wearing a tight cap. Right now my knee and heal feels like they have a tight brace on them, and that blood blister in my scare is starting to hurt. I better get back in bed.
Title: Re: Can't stand the pain anymore
Post by: travelthomas on November 06, 2012, 12:52:57 AM
Do you think you felt better in India because of a different climate?
I live in England and my knee feels terrible here, but when I went to Kazakhstan in the summer, my knee was so much better that I could jump and I could feel it healing.

I always felt better living on the Caribbean, but I think that had to do with snorkeling everyday, and all the exercise. Same with India, and staying in places like Goa.

Here in the Pacific Northwest I have too much time on my hands to focus on things, which happens to be my pain.

Concerning the blood blister, I just got a call back from my OS's nurse, and she said it's nothing to worry about. I e-mailed her a picture. She said to just watch out for redness developing around it, and it getting hot like an infection. She said it might break with time, and some fluids might come out.



Title: Re: Can't stand the pain anymore
Post by: RLE on November 06, 2012, 02:27:08 AM
I don't know guys how you are coping with pain but it' too much for me and it' just getting worse when I thought it couldn't get any worse. I can't live like that anymore. :(
I understand about the pain. What is yours caused by? I've had many years of pain-many many many causes but when I had my knee accident the pain was literally unbearable and I lost my mind a few times-literally. Nothing helped with that level of pain and I thought I had learned to cope with pain in my life but after a year of it I couldn't do it anymore, I couldn't live with that level of pain, I think people with illnesses with that kind of pain get morphine drips and all I got was Percocet a couple of times a day and that was a battle. I couldn't go on and overdosed last summer and almost succeeded-3 days in ICU. I came through it and a few weeks later the surgeon called and I had my surgery. The post surgical pain was also beyond anything I've experienced but finally I'm doing better and my pain is manageable. So I understand not being able to do it. There are pain management clinics and hopefully your pain is something that can be fixed.
Title: Re: Can't stand the pain anymore
Post by: newyorkcityknees on November 24, 2012, 07:50:13 PM
Be very very careful how you use opiates.  Two years ago I was awaiting a total revision and allograft and on a very very bad pain day, got a phone call that my best friend of 30 years died suddenly.  We were on the phone the day before.
I began to loose it, and in a rage forgot my blood pressure meds but overused the morphine.  Then bang, I do not remember it but my friend living with me said she heard a loud thump.  My brain began to bleed.  I was taken to a community hospital in Staten Island where I was at the time, then transferred to Cornell Univ. downstate Hospital,  four weeks in a coma on the edge in the ICU.

While the docs are not sure to this day they feel that the hemorrhage was brought on at least partially from overuse of morphine the prior day.  I was not trying to hurt myself just mellow out and I almost did for eternity.  Somehow when the pain is soooo bad I do not think I can go on, i just hang in so far even though I have thought of ending it I somehow get over the edge and move on.  Keep trying but please be very careful on overuse of opiates, been there done that no fun.
Title: Re: Can't stand the pain anymore
Post by: newyorkcityknees on November 27, 2012, 05:36:34 PM
I woke this morning in abject agony, after telling others to be careful about overusing opiates I had to take my second sixty miligram morphine just two hours after my first, in effect five hours early, and still in agony.  It is amazing what the body can stand in pain, I guess when it gets this bad you literally have no choice but to take it as it comes.  I wish I could have the revision and sometimes think I should find the doc who will overlook the problem with my teeth and do the revision anway.  All I could do to get this far today is think of my children and grandchildren and my love of music.  Here in New York we have access to the best classical and operatic music in the world, and next week I am scheduled to attend two evening performances.  I may try to see my pain management doc tomorrow if the pain continues this bad and see about an injection, but as we all know the docs do not like to inject into a replaced knee because of infection issues.   Do not know why I wrote this rant especially in someone elses thread except to say to those who feel like I do today you are not alone, God gave us the ability to handle this pain so I guess there must be a reason for it,I guess when we feel we cant stand the pain any more we just have to think of better times and pray for relief, If I don't keep busy now I may just take another haver morphine tablet but I know that it is not a good idea especially with my history, guess i'll just listen to some musica  and hope that tomorrow will be better, it truly can't be worse.  I am getting a new manual wheelchair delivered on Friday, so I may be able to get around better.  The power wheelchair I have is great for my apartment and myt  block but cant use it to cross streets.  I am seeing my physic therapist to get some home exercises to get better stregnth in my upper core and arms to use the manual chair outside.  Using the power chair this long has cause me to loose stregnth in mny arms so I will need some excercises,  I had some given to me after my brain bleed using the arms of the wheelchair to lift myself and I think I'll start there.  I can take the manual chair to the two music performanmces and leave it checked securly in the lobby after I get to my seat, the ushers will watch it and bring it to me at intermission. I have to get left aisle seats since my right leg will not bend enough to sit in a standerd theatre seat so my reservations have to be made far in advance.  Last season the pain was so very bad I had to cancel my season seats and donate them to a local music school but this year I promised my self regardless if I have to crawl I willk get to several performances, I guess all we can do is puish through the  pain and as my physio wouldm say, keep breathing.  Please do not give up this site which is new to me helps me and others I think to link together and united we will be able to do more than if we think we are along.   God bless and Good luck to all
Title: Re: Can't stand the pain anymore
Post by: Lana1 on November 27, 2012, 08:37:36 PM
Hi Newyorkcityknees
I am so sorry you are in pain.. I walked too much yesterday, more than usual, around 10-15 min and tried not to use sticks much and today I am paying the price. Been in a lot more pain today because of that, been crying all day. Can't believe all this pain because of some stupid yoga instructor pushed me through the pain last December so I injured cartilage in my knees. Got my scope booked for 10th Dec, so scared but I guess I have to go through it, there is flap in my cartilage, which needs to be removed.
Do you feel that praying helps you? I pray every day, it gives me some strengh, but today I just lost it.
Title: Re: Can't stand the pain anymore
Post by: newyorkcityknees on November 27, 2012, 10:56:51 PM
I know this site is not about prayer, however I will share something with you.  When I had my brain hemorrhage two years ago in December I was in a six week coma.  I was never religious and hardly ever prayed.  The it all changed.  I remember only one incident in my six weeks in the ICU of a large hospital.  On a given day, I do not know when I recall as vividly now as then I was totally surrounded by a bright yellow light, and susddenly i felt lifted up, then music, singing totally sorrounded me, I do not how long it lasted but it was the most real experience I have ever in my life felt.  When I woke from the coma, the first thing I did is ask the nurse in the ICU if I could see the Hospital Chaplin/  She came to my bedside and with tears flowing down my face I told her what the experience was.  She smiled in a knowing way and said that in her many years as a hospital chaplin she has heard similar stories from many patients who were very very sick.  As I began to think better, I recall telling my children about the experience, then my daughter who is maried to the son of an Episcopal minister related how on the ninth day I was in a coma the Neuro Surgeon called my daughter and ex wife and said they did not think I would survive, that my brain was swelling and the bleeding continued.  That night my son in laws father call together a number of members of the chrch he ministers at, they assembled at the church, and took a cloth, anointed wi with oil and prayed for my recovery, then he drove to the Hospital and asked the ICU nurse if he could place it on a bed rail on my bed.  She said yes. The long and short of it is I recovered, from a large brain hemorrhage most people do not live through.  Since then I attend church on a regular basis, I do,not pray for things I simply offer thanks that somewhere somehow God as I know him saved me and I am forever beholdent.  I always considered myself a hard nosed guy, growing up and living in Brooklyn, the Bronx and then manhattan, a typical know it all New Yorker, but since that experience I have changed.  On the really bad days when I can take no more morphine and my knee feels it is about to explod, I simply thank my maker for allowing me to live long enough to fight this knee issue.  I do not know a lot, and I graduated University near the bottom of my class, but I do know that when I was on the edge some people who cared gathjered together and prayed for a recovery the docs did not think was possible so yes I pray, but not for material things but for the ability to continue to experience both the good and bad so long as I live.  It works for me hopefully it will work for you.
Title: Re: Can't stand the pain anymore
Post by: Lana1 on November 28, 2012, 02:59:37 PM
That was interesting experience you had. What do the doctors say about your knee problem? Can they fix it?
Title: Re: Can't stand the pain anymore
Post by: newyorkcityknees on November 28, 2012, 04:10:31 PM
Lana1.  The docs do not think that even a revision would help the pain.  I presently take over 300mg morphine a day, and at least 75% of the time I have very bad breakthrough pain.  The OS's I have seen tell me that if on such a high dose of morphine I still have pain in the 8 to 10 range it is not a good predictor of being more pain free even with a perfect revision. A few say they will do it and are optomistic but even they say that with the wires I have holding my patella which was broken in half twice, a revision could make things worse if that is possible.  I had an apointment at The Hospital for Special Surgery last month but all elective appointments were cancelled after the hurricane which closed down two major hospitals in New York City, so I have to wait until after the first of the year to get a new appointment.  Frankly with the history of a brain hemorrhage and gross muscle atrophy in the bad leg I am not overly optonistic, the other issue is finding a surgeon willing to work hand in hand with my infectious disease doctor dealing with the issue of the broken teeth and gum issues.  It will be over a year before the oral surgeon conpletes the reconstruction and does the final implants .
Even if I found an orthopedic surgeon who I felt was up to the task I would have to give it a lot of thought, my pain management doc says she can get me better control by adding an anti-inflaminiatory drug to the mix, but I have to be careful, because the last time I used a high dose of the NSAID"s I had some kidney issues, so we have a big mix to deal with and at least four docs to have on board which is difficult to get them to speak with one another.  I am getting my manual wheelchair delivered today so I can get out and about and only use the power chair in my apartment.  Thanks
Title: Re: Can't stand the pain anymore
Post by: Lana1 on November 28, 2012, 06:36:16 PM
Newyorkcityknees, I am sorry you feel so much pain..
if you are in so much pain right now, the surgery might  help I think. At least there may be chance.. May be you could try to see another OS. Otherwise you will require higher doses of morphine and NSAID's might make your kidneys worse... Do you have partial knee replacement?
I will be praying with you that you get better.. You are very strong!
Lots of hugs.
Title: Re: Can't stand the pain anymore
Post by: Lana1 on November 28, 2012, 08:41:28 PM
I am in such pain :(
Title: Re: Can't stand the pain anymore
Post by: newyorkcityknees on November 28, 2012, 09:25:21 PM
Lana1, thanks for the good thoughts.  If it were not for the issues with my teeth, I think I would have settled on a surgeon and given it a try, I can't imagine it being worse.  My total knee replacement was done in 2001, so I have eleven years on it -+my x-rays show a loose tibial component.  As a matter of fact I had a date sheduled for a revision about six months ago but could not get the dental clearence I needed, so it was really a matter of not having a surgeon I felt I could work with.  As soon as the holidays are over I am going to see a surgeon at The Hospital For Special Surgery, they are rated number one in the United States for orthopedic surgery.  The infectious disease doctor who would clear me suggested two doctors who operate from that hospital.  I would hae gone last month, but as I said Herricane Sandy and the flood it caused shut down two major hospitals in Manhattan, one connected to The Hospital for Special Surgery.  Nearly eight hundred patients had to be moved from the two facilities to other hospitals in New YOrk City, the overload caused the hospitals that took these displaced patients to cancel all but the most critical surgery, unless I had an infected prothesis on my total knee, I could not get scheduled.  From what the press reports, at least one the the Hospitals will be up and running again right after the first of the year.
We all know how hard it is to get the atention of busy high reputation surgeons, in my case I have to have the orthopedic surgeon speaking to both the ionfectious disease doctor, my neuro surgeon and the oral surgeon and anesthesia doc, need I say more so right now it is simply a matter of wait and see what happens after the first of the year when I can get an apointment at TheHospital for Special Surgery, between now and then I will have one more tooth extracted so I will have at least a little progress.  So long as I am careful the morphine can take my pain froman 8 or 9 down to a 5 or 6 part of the day, it usually is worst after three or four in the afternoon and escalated till I take my night time dose of seventy five mg morphine extended relief so I can get about six hours sleep.
The only other option is a very local doctor who just added a new surgeon fresh from a fellowship.  Here in New York City we have hospitals serving different areas of the city and the big teaching facilities in Manhattan.  There is a local hospital less than two miles from my apartment.  They have only 85 beds and no teaching doctors.  A local doctor, the only orthopedic surgeon at the hospital close by would not take my case a year ago because he said he felt I was too opiate dependent.  I understand from word of mouth that his new partneri very agressive and excellent, and I think from what I hear he may be willing to take my case.  The only problem is that the local hospital does not have any neuro surgeon, or cardiologist on staff, just a few surgeons and some general hospitalists, who are really primary care physicians covering the florrs.  If anything out of the ordinary came up I would have to be transferred to a larger Hospital, since I have the brain hemorrhage and some kidney issues I really do not feel safe going to the small local facility with virtually no medical back up, and have to be at the mercy of a transfer by ambulance if any complicatioins arose.  Soooo, right now it is continued pain management and the focus on making the holidays as m,uch fun for my children and grand children the focus on the knee early next year.  Thanks ands God bless.
Title: Re: Can't stand the pain anymore
Post by: Lana1 on January 21, 2013, 11:18:07 AM
I had enough I am afraid, I am not getting any better, last few days were awful. Swelling post op doesn't improve, I am worse off 6 weeks post op :( :( I am crying my eyes out last few days. Nobody can help me. I am scared.
Title: Re: Can't stand the pain anymore
Post by: dm on January 22, 2013, 03:28:43 AM
you need to have a direct discussion with your doctor about what's going on. explain what your pain is like, where, when and how it occurs and worsens, discuss the concerns you have with the swelling, etc.

Make a list of your questions and have a discussion of what was done, and what the prognosis is. You need to understand fully what was the problems he found, what did he do about them, and what is the recovery plan, including therapy, etc, so that you can understand what the doctor feels is or is not normal about your stage of recovery at this point in time.

That is what you can also address... is this where you are now, expected or not? If not, what are they gonna do about it, cuz you can't keep on like it is, and explain why. Not just emotional, but the physical, reasons for why what is going on has to change.

sad fact, but if you can keep from crying while in there, and take a friend with you, you are likely to get better results than if you go alone and go in there bawling. show some of how you feel... but don't blow a gasket if you can help it... I've seen people do that and the docs often seem to tune out when that happens, especially if they're not real "people person" types to start with, if you know what I mean.
Title: Re: Can't stand the pain anymore
Post by: Lana1 on January 23, 2013, 02:32:34 PM
Dm, thank you :)
Been to GP yesterday, whatever I say doesn't bother her, I have a fever again, probably it's an infection I have. She wasn't bothered. So I wrote the complain to GP, but won't send it yet, see what happens when I talk to OS tomorrow. My husband is coming with me.
OS referred me to the pain clinic a while ago, still waiting.
Told him the swelling doesn't let me do exercises, said keep taking antiinflammatories, they make me so sick. Do they do anti inflammatories as injections in the uk?
The only exercise I can do is heel slides and it's 6,5 weeks post op.
Talked to the Horder centre's physio today, he said he could try pain reducing techniques as laser or ultrasound. At last something. Hope it will help.
Title: Re: Can't stand the pain anymore
Post by: Lana1 on February 06, 2013, 10:57:16 AM
It's been 2 months now since the op and no improvement, constant agonising pain and yesterday I've been told I have CRPS. My knee is purple red. I could give anything now to have my old knee back with the pain pre op. Why did I decide to have a surgery.. I had a good knee, no swelling to stiffness just some pain.. Which could've been helped with antiinflammatories, I've been taking them for 3 weeks now and my other knee is much better now..
I decided I want to leave this world, I really don't want to, but don't want to be in agonising pain either. I am so sad I'll be leaving my parents, husband and cat, I love them very much :( why is the life so cruel :(
Title: Re: Can't stand the pain anymore
Post by: Brambledog on February 06, 2013, 11:33:15 AM
Lana, I'm so sorry you got the diagnosis of CRPS. I completely understand everything you've said, but don't give up. You will have bad patches like this where things see hopeless, but also better patches where things seem possible again and you can live life. I'm stuck at the moment in bed with my knee horribly swollen and painful, and I really do understand.

Don't let it beat you Lana. Life can still be lived even with this thing. You do come through that awful initial hopeless phase and learn to cope. Never give up. I'm here if you need me.

(((((Hugs)))))

Brams  ;)
Title: Re: Can't stand the pain anymore
Post by: Mistyd on February 06, 2013, 04:49:17 PM
Lana,

First, let me tell you how sorry I am that you hurt so bad and have been suffering for these past 2 months. I am praying for you (and God DOES HEAL!).

Second, I would like to share a little of my back story.... I am 39 yrs old and have had a hysterectomy at 25, fasciotomies (surgeries where they lay the whole limb wide open) on my left arm 4x (which is medically unheard of) and still suffer from repetitive acute compartment syndrome of the left arm (8 surgeries total with many times 'opting out' of the same surgery when the arm swells so bad the skin splits). I have had 2 debridment scopes of my left knee along with harvesting of cartilage (2/4/13) for an upcoming ACI surgery of that same knee (left).  My right knee also has a cyst and some torn cartilage and I am praying will not need surgery also  ::) ;).

I say these things not to say that my pain is bigger or worse IT IS NOT!  Just to say honestly, that I do understand chronic pain (I have had it since 2002 with my arm) and how it can wreak havoc with your emotions, life, and desire to live.  The truth is, things do change.  I do still suffer chronic pain, however, my body has adapted, my pain threshhold (which was high to start off with) has become higher, meds have been given to help keep it under control, I have learned (after much depression, frustration, and practice) to focus on things that help others. Little things like my dogs funny habits, a beautiful sunrise, sunset, just the ability to get up and do something that someone else can't do (many are wheelchair bound, bed bound, have lost limbs, have pains in the back or neck or head or abdomen that keep them from doing soooo much more than me - and believe me, at 39, needing to have someone cut up my meat because my arm is useless is embarrasing  :-[ ;)).  Focusing on these things and praising God for what I have, has made my life so much easier to cope with.... I actually enjoy living!  Something I never thought I would say again!

I am a very athletic person, horse trainer (at least was...still attempt to at times, but teach still) and to be limited in the very things I love.... very hard to deal with.  Depression slips up fast, it robs you of the joy of living, all you can do is see the dark void, feel the life being sucked out of you, and feel the weight of life rather than the hope.  Honey, I am so sorry you are going through this!!!!  PLEASE, KNOW THAT THINGS CHANGE!!!  SOMETIMES RATHER QUICKLY FOR THE BETTER!  You won't be able to know this if you take your life.... but your husband, family, friends, and yes your cat, will all be left with guilt, remorse, anger that you stole your life from them when things would have changed for the better.  AND THEY WILL!!!

Lana, life is short to start off with... God has given us an opportunity to learn, grow, become all that we can be for others and Him.  Yes, life does throw some monkey wrenches into our plans :o, but that can also help us to appreciate the good times that much more. It also can help us to lean on Him, family and friends, develop stronger bonds, and help us to have empathy, sympathy and help others who may go through something as difficult as what you are going through right now.  Try to see that this difficult time is only for awhile.... IT WILL CHANGE, YOU WILL COME THROUGH IT AND BE BETTER!  Depression blinds you from hope and the ability to see outcomes other than the morbid and painful.  And there are other outcomes!  Talk to your husband about what you are feeling, tell your dr where you are at.  Both of them can help you be it a shoulder to cry on and support, meds to aid in pain, diagnostic expedience for why your pain is so bad, etc.  To end your life at 2 mos. post op (let alone at any time) is a shame and a waste. YOU ARE WORTH SOOOOOOO MUCH MORE!!!!  YOU MAKE A DIFFERENCE WHETHER YOU KNOW IT OR NOT!!

Please talk to someone Lana. I am praying for you  :) <<hug>>


God Bless and heal you,

Misty
Title: Re: Can't stand the pain anymore
Post by: The KNEEguru on February 07, 2013, 09:28:04 AM
The Horder Centre referral sounds of potential benefit to you. Although CRPS can be incredibly distressing, you are still in a relatively early phase of rehab and should respond well to diligent physiotherapy and pain management, and they seem to offer both these.
Title: Re: Can't stand the pain anymore
Post by: The KNEEguru on February 07, 2013, 09:59:55 AM
This paper by Dr Karen Rodham from Bath, talks about an inpatient programme there, but also gives useful advice for getting through difficult days.
http://staff.bath.ac.uk/psskr/patient%20leaflet%20version%201.pdf (http://staff.bath.ac.uk/psskr/patient%20leaflet%20version%201.pdf)
There are contact details at the end if you want to make contact and ask about services nearer to you.