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matt3507 11-08-2008 02:29 PM

Barely hanging on. Long post, sorry
 
I am so messed up. I've lurked here w/few posts last 2.5 years. I hurt my back doing construction. Had multiple numb parts of body. Long story short, the last couple months I started doing Qi-Gong and it seemed I was headed in the right direction. Now my pain doc. is moving. I knew it was coming and thought I could deal w/it. But I am losing it. I saw another one 3 days ago and it was a nightmare. A "simple" strength test was ok in the office. But like clockwork, 1-2 days later my house sounds like a horror movie. My headaches put me over the edge. I didn't sleep for 2 days. I paced and moaned/cryed like a baby. Wife out of town few days. Back spasms are hell and make me go "uuugh!!" in public all the time. However I don't think I can leave the house anymore. I am at my limit I'm breaking down. I am going to see my psych. next but my doctor was the BEST! She was master of the accupuncture needles. I always felt great leaving here office. I am having massive mood swings. It's only been 2.5 yrs. but my old life is gone, I know many of you had to surrender your lives and start over also.
My childhood was a nightmare. My family all turned into freak hermits. I've tried to act "normal" but I am coming apart now. I have managed to suppress some psych. issues over the years but this neck thing stole everything I used to do. I had it all, all I wanted. Now I carry a bag of sugar to the car or look the wrong way. I go home and sit there and moan. I know it's wearing my wife out to. I'm just a drain on resources now. I've seen 12 docs/pt's. I look ok sometimes but I am far from it. Hope, disappoinment over and over, you know the drill. You get the knock down every day you will break down over time. Fear takes over. I don't want to do anything now, the pain stops my life. Now I am thinking about staying in bed. I don't know what to do. I can't take another "beating" at a doc's office. I'm hermitting. I just can't dealw/it. I emailed my old doc. as well as the new one but I'm afraid to read the replies. I'm just going to leave the curtains shut and read the web. If you read this, thx. I will read these replies.
Peace to all of you, matt

usps 11-08-2008 03:31 PM

Re: Barely hanging on. Long post, sorry
 
HEY FRIEND>>>>>SOMETIMES YOU JUST HAVE TO MANAGE TO GET THROUGH THE DAY THE ONLY WAY YOU CAN>>>EVEN IF IT MEANS TALKING TO SOMEONE ONLINE THAT KNOWS YOUR PAIN>>>YOU HAVE TO REALLY EXPERIENCED PAIN TO TRULY UNDERSTAND> talk to me and let me tell you my story too....If it had not been for the Grace of God and a loving husband I would not have made it....Please talk to me. my story turned around and yours can too

helenoftroy 11-08-2008 09:40 PM

Re: Barely hanging on. Long post, sorry
 
Hi there, I am so glad you said you'd read these replies. We may or may not be as crazy as we feel but we're not alone. You are not alone. It is really hard for anyone who hasn't had this problem to understand. Sometimes what's even worse is the cheery "buck-up kiddo" from the acquaintance who had one-level ACDF surgery and bounced back to head up the company softball team. Even the pain management doctors reveal how little they understand. About 6 months ago, my pain management doctor told me how he could now empathize with his patients since he had woken up with a crick in his neck and it hurt for two days. Soooo, how can they grasp how much a "simple strength test" can hurt and how demoralizing it can be for something so "simple" to hurt so badly? It will pass in time. Sometimes when I am feeling the way you described I try to focus on the smallest increments of time or accomplishment - just to find something positive to focus on. examples of positive focuses - that I haven't had to cry out in 5 minutes; being able to breathing to create the ocean sound (the oojaye breath from yoga) without increasing the pain in my arm; or the fact that my dog can jump on the bed without that killing me. If that's not possible, if him jumping up kills, I go back to the breath. It's a mental trick. Another related trick is to find some kind of task - organizing my bedside table or a drawer in the bathroom, just to be able to DO something. Because focusing on what's not right or what's not possible right now will really keep you down. I recommend not being a hermit. My leaning is always to enter that hermit state but then when I do get out, even to do mundane tasks, I feel better. Even if you don't talk to anybody, go outside. Stick with it and let us know how you're coming along.

sammyo1 11-09-2008 05:08 AM

Re: Barely hanging on. Long post, sorry
 
Matt I am so sorry. I can say I found a PM who is so understanding & trys to not let me suffer. I already freak just thinking if he was to retire but It took some doing to find him. I talk to people on the PM board who loose their PMs or have to find one who works well with them & its not easy but not impossable either. I feel so bad for you & would do anything I could to help. I do understand, it all makes you feel helpless & desperate & even at times at the mercy of others. I think we all understand. You said you emailed you PM who moved perhaps she can work with you on finding another PM that is a better fit. You have to keep looking & others have been in your shoes so they know.
As far as your wife I am sure she loves you no matter what. I know how this takes from your marriage, as I feel the same at times, but it is for better or for worse. That is what love is all about. I know this can take its toll on a marriage, it is on mine at the time.

Can you refresh my memory did you go through surgery?

Perhaps you should try popping on the PM & chronic pain board & asking if anyone knows of a doc. in your area. Either way they are a great bunch there & I can say dont know what I would have done with out them.
There are so many days I just want to stay in, just be left alone. Even though I know I should not be working at all I hang on by a thread because I know I would struggle at times with getting my butt out the door. Deep inside I know how I would be if I did not force myself to hang on to what I have. My PM just hinted again at not working & does not know how I am doing it. I do it because I have to & know that I would more then likely stay in 95% of the time. I went through giving my life over to chronic pain & just managed to take some of it back.
I force myself to take it "one day at a time" no matter what. Sometimes we just cant focus on who we used to be but who we are now & take it from there. I try to stop myself from thinking about all I used to do, I cant tell you how much I understand, so many days I have to push anger & resentment aside. So many days of sitting in my car & just cry out of pain & frustration. Strapping ice & heat on & praying all the way to work, knowing I should not even be going. Resenting my husband at times & those around me for not understanding. Tired of being scared of any changes. Any of this sound familier?
If anything we understand. I did everything before this, never asked for help, never waited around for my husband. Its the hardest darn thing to rely on others till this day I cant get used to it, I just cant. In alot of ways we all feel the same. Take it one day at a time, tackle one thing at a time. Like for now focus on finding the right PM for you. In the mean time please explore the PM & CP boards just having those who understand can help. God bless Matt & hang in there. You are never alone, Sammy

feelbad 11-09-2008 09:05 AM

Re: Barely hanging on. Long post, sorry
 
matt,you have gotten some very wonderful advice and just words form those of us who just know what you are going thru right now. you are NOT alone there,trust me on that. i am wondering if you have even actually had even a MRI done to just really see what is generating all this pain? in order to have the level of pain you are having,something has to be causing it. finding out just what that is will really help in just confirming that there is a very valid reason for what you are feeling,like its not all just in your head type crap?

you just sound very overwhelmed right now and could use something positive. finding out what is creating this hell is a big step in that direction,believe me. once you can find the reason,you just take that next step in finding out what you CAN do to try and get rid of it or at least make things more tolerable for you. just exacty what is occuring symptom wise and where is it located?

i really do feel for what you are going thru,unfortunetly alot of us have been where you are at or are there right now too. you DO have people here who understand why you are feeling what you are and that is huge for someone who is simply suffering thru anything. just knowing you are not alone and that someone out there really understands is what support is all about ya know? we are here for ya. just get some testing done if you have not already done this to find out what is simply wrong. hang in there matt. please keep us posted on how you are doing.marcia

matt3507 11-09-2008 11:34 AM

Re: Barely hanging on. Long post, sorry
 
God thx guys so much. I finally slept, getting sanity back. I am still wanting to live. Thanks, I will post later. Matt

usps 11-09-2008 11:16 PM

Re: Barely hanging on. Long post, sorry
 
matt,,,,,sweet dreams ,,,wake up and try to think of anything to be thankful for...then concetrate like heck on that until you can think of something else to be thankful for....go on and on until you find yourself with the pain in the back of your mind....YOU can get through this until you find another pain dr..that will understand...also dont give up on getting someone to help you try to fix your problem.....but always remember to be thankful for the little things, like even a minute without pain and bigger things will happen.........you friend in pain........i have a son named matt.......

feelbad 11-10-2008 07:53 AM

Re: Barely hanging on. Long post, sorry
 
have you actually had an MRI matt? i didn't see anywhere in any of your posts that stated whether you have had one yet to find out the underlying problem. if you did,what did it state as the hard findings in the summary? just want to try and help you matt,thats all. knowing what is there would help us to help you if you already had an MRI done. Marcia

matt3507 11-11-2008 12:06 AM

Re: Barely hanging on. Long post, sorry
 
OMG Thank you all so much for your concern! I'm much better. Wow that sleep deprivation/HA reduced me to an animal, I was going nuts. I am so thankful it passed. Reading your posts - I can't explain how much that helped. My wife is back now, too. I will post more tomorrow and see how everyone else is holding up, I need to go to bed. If anyone is down now and reading this, remember it WILL pass eventually. :)

matt3507 11-11-2008 09:52 AM

Re: Barely hanging on. Long post, sorry
 
Hello c.p. Thank you very much for your reply. It meant the world to me. Yes, please post your story, I want to hear it. I am taking some classes and that helps me to concentrate on immediate tasks like you said.


[QUOTE=cpowellusps;3787088]HEY FRIEND>>>>>SOMETIMES YOU JUST HAVE TO MANAGE TO GET THROUGH THE DAY THE ONLY WAY YOU CAN>>>EVEN IF IT MEANS TALKING TO SOMEONE ONLINE THAT KNOWS YOUR PAIN>>>YOU HAVE TO REALLY EXPERIENCED PAIN TO TRULY UNDERSTAND> talk to me and let me tell you my story too....If it had not been for the Grace of God and a loving husband I would not have made it....Please talk to me. my story turned around and yours can too[/QUOTE]

matt3507 11-11-2008 10:01 AM

Re: Barely hanging on. Long post, sorry
 
Hi helenoftroy. Thank you so much for replying!


[QUOTE=helenoftroy;3787363]Hi there, I am so glad you said you'd read these replies. We may or may not be as crazy as we feel but we're not alone. You are not alone. It is really hard for anyone who hasn't had this problem to understand. Sometimes what's even worse is the cheery "buck-up kiddo" from the acquaintance who had one-level ACDF surgery and bounced back to head up the company softball team.

Or even better the "buck up" from your NEW pain doc!


Even the pain management doctors reveal how little they understand. About 6 months ago, my pain management doctor told me how he could now empathize with his patients since he had woken up with a crick in his neck and it hurt for two days. Soooo, how can they grasp how much a "simple strength test" can hurt and how demoralizing it can be for something so "simple" to hurt so badly? It will pass in time.

Yes it will pass in time, thank you for reminding me.



Sometimes when I am feeling the way you described I try to focus on the smallest increments of time or accomplishment - just to find something positive to focus on. examples of positive focuses - that I haven't had to cry out in 5 minutes; being able to breathing to create the ocean sound (the oojaye breath from yoga)

I am not familiar w/oojaye breath, I will search net today for info.


without increasing the pain in my arm; or the fact that my dog can jump on the bed without that killing me. If that's not possible, if him jumping up kills, I go back to the breath. It's a mental trick. Another related trick is to find some kind of task - organizing my bedside table or a drawer in the bathroom, just to be able to DO something. Because focusing on what's not right or what's not possible right now will really keep you down.

Yes again, will keep busy.



I recommend not being a hermit. My leaning is always to enter that hermit state but then when I do get out, even to do mundane tasks, I feel better. Even if you don't talk to anybody, go outside. Stick with it and let us know how you're coming along.[/QUOTE]

Blessings to you

matt3507 11-11-2008 10:39 AM

Re: Barely hanging on. Long post, sorry
 
Hi Sammy101: Thank you so much for your concern, it kept me sane.


"[QUOTE=sammyo1;3787527]Matt I am so sorry. I can say I found a PM who is so understanding & trys to not let me suffer. I already freak just thinking if he was to retire but It took some doing to find him. I talk to people on the PM board who loose their PMs or have to find one who works well with them & its not easy but not impossable either."

Thx, will keep looking for P.M.

"I feel so bad for you & would do anything I could to help. I do understand, it all makes you feel helpless & desperate & even at times at the mercy of others. I think we all understand. You said you emailed you PM who moved perhaps she can work with you on finding another PM that is a better fit. You have to keep looking & others have been in your shoes so they know.
As far as your wife I am sure she loves you no matter what. I know how this takes from your marriage, as I feel the same at times, but it is for better or for worse. That is what love is all about. I know this can take its toll on a marriage, it is on mine at the time."

I will be praying for your marriage, I am certainly no expert even after 17 years. One thing that has helped me is not keeping in my feelings and "sulking" (not accusing you of this, but I do, I think it is a guy thing). The longer it is quiet the worse it gets for my marriage. Our spouses don't have our pain, but their lives are affected, also. My wife gets frustrated that she can't help.



"Can you refresh my memory did you go through surgery?"


No, I did not have surgery. I got an mri. c5-c6 bulge (I sometimes wish it just would have popped). c7-t1 severe foraminal stenosis (left arm numb, didn't work right). DDD all cervical levels. My primary doc. said I needed surgery. I met w/surgeon and he was ready to schedule. I wanted another opinion and saw a neurosugeon. He recommended I did not have surgery. I chickened out, put it off, and it's been 2.5 years.



"Perhaps you should try popping on the PM & chronic pain board & asking if anyone knows of a doc. in your area."

Great suggestion, I'm doing it today.

"Either way they are a great bunch there & I can say dont know what I would have done with out them.
There are so many days I just want to stay in, just be left alone. Even though I know I should not be working at all I hang on by a thread because I know I would struggle at times with getting my butt out the door. Deep inside I know how I would be if I did not force myself to hang on to what I have. My PM just hinted again at not working & does not know how I am doing it."

Wow, you have will power. Please do not make yourself worse though. No heavy lifting please!



"I do it because I have to & know that I would more then likely stay in 95% of the time. I went through giving my life over to chronic pain & just managed to take some of it back."

If you have time, I know you were waiting on mri results last month or so. Results?


"I force myself to take it "one day at a time" no matter what. Sometimes we just cant focus on who we used to be but who we are now & take it from there. I try to stop myself from thinking about all I used to do, I cant tell you how much I understand, so many days I have to push anger & resentment aside. So many days of sitting in my car & just cry out of pain & frustration. Strapping ice & heat on & praying all the way to work, knowing I should not even be going. Resenting my husband at times & those around me for not understanding. Tired of being scared of any changes. Any of this sound familier?"

OMG, so familiar!



"If anything we understand. I did everything before this, never asked for help, never waited around for my husband. Its the hardest darn thing to rely on others till this day I cant get used to it, I just cant. In alot of ways we all feel the same. Take it one day at a time, tackle one thing at a time. Like for now focus on finding the right PM for you. In the mean time please explore the PM & CP boards just having those who understand can help. God bless Matt & hang in there. You are never alone, Sammy[/QUOTE]"

Thx so much again, that was one of my lowest points yet and your post helped so much.

matt3507 11-11-2008 11:39 AM

Re: Barely hanging on. Long post, sorry
 
Hello Sky: Thank you so much for your reply.


"[QUOTE=SkyReech;3787609]Hi Matt,
First of all I want to say that I am so sorry the pain is so bad and your emotions are all over the feild! I hope you won't mind me saying some prayers for you. If that offends you just let me know."

That does not offend me and I will pray for you also.


"I like Sammy have been down this road a long time now and I too post on the Pain Management board...My stpry is over there is you want to read it."

I will find it today, if not maybe you can tell me exactly where to find it


"I am not sure if you Psychologist is one that specailizes in chronic Pain, but that is one option...I saw one for a surgical consult and I am considering going to him when I get to the point that it is time to get the meds lowered and find new ways of coping."

I will look into this, damn psychiatrist didn't call me back!


"In July of 2007 my life was forever changed becasue of a car accident that led to 2 surgeries on my neck this year....First a posterior cerivacal foraminotomy in January....then most recently a 2 level Fusion of C 4-6 on Spet 3 of this year..."

I will pray for your successful recovery

"Matt I can really relate to wanting to crawl into a ball --fetal posiition and just be done with all the apin and doctors and all that stuff...it really takes its toll on every waspect of your life....
It becomes very difficult to even know where to beging to start to get little pieces of your life back...
There are still some aspects of my life that are very uncertain...I have been told by two doctors i will Unfortunately always have a "bad Neck" those words are almost verbatum by an NS and an Ortho Spine surgeon."

You have been through much more than I, but I must say, doctors are proven wrong all the time - no joke - they do not know everything. Here is praying that new technology arrives soon that will make you as you were. That is no pipe dream, in europe they are using artificial discs and other technology and are not bogged down by beaurocracy like doctors are here. I hope I don't offend anyone, but the lawyers here in America (in my opinion) scare doctors and prevent them from doing alot.


"I am not married so I hae only the experiece of others to share with you...people like Sammy whom I have been blessed to have been able to walk down this road with for the last year or so....she is/has helped me so much! Like many others have also done for me...
I am glad to hear that you have contact with your old PM doctor...How far away is she???? Do you think she can help you to find a new doc???"

Well, unfortunately she recommended this last guy I just saw. He was 1.5 hours late on my first appointment, beat the sh#@ out of me, told me to buck up, and answered his cell three times in my appointment!


"Matt I am not real familiar with your neck injury history, but if you feel up to it and want to share a bit more about what happened to your neck and what kinds of treatments you have had that would be great and if not I will still understnad and be here to hlep support you through this time....this journey this process....it is a process..."

A willing audience? here goes: June '06 I was digging ditches and demolishing some concrete w/sledge hammer. I had done this for past 8 years. However, that job turned into job from hell. My labor quit and I did the job myself working from sun-up to well past sun-down (18 hour days 2 weeks straight). I was cheap and should have got a machine. Well, I woke up at 4 A.M. with a knife in my left shoulderblade and numbness over 1/2 of arm and fingers. ER, mri. Bulging disc c5-c6 right side, severe foraminal stenosis left side, ddd, arthritis. N.S. 1 said surgery. N.S. 2 recommended no surgery. I chickened out and hoped for the best. I saw a PT and next day my headaches appeared and have not left me for any length of time. I saw a PT for 6 months, we just did light resistance exercises - did not help. I saw another doctor who did Intramuscular stimulation - 6 months - that brought me up a level, I used to couldn't sit back in a chair. I saw another PT - his approach was neck massage - 6 months, no real change. Traditional accupunture 3 months - I didn't notice a difference. Next was Feldenkrais, I can't say enough about this science, it has helped me immensely. I am still going to Feld, practitioner, and she also turned me on to Qi-Gong - please look into this, it has helped me alot. You can get videos and make ultra small movements, that get bigger w/time. I've had the same physiatrist 2+ years, she is moving. She performed IMS (Intramuscular stimulation) also, very helpful, at least temporary. It has been a rollercoaster. I still can't carry anything over 10 lbs. for any distance, or walk, w/o bringing on spasms/headaches form hell. Random stuff sets it in motion. It defies logic. As a former general contractor, my tiny brain thinks it is something "loose" in there. If I could get in there w/some duct tape I swear I could fix it. I may have forgot something in there, but that is basically my story.


"Here comes the big "A" word Acceptance....I struggle here! Somedays I am totally fine with everything and other days I am not...
Today I am not so much unaccepting, but I am sick and it causes the pain to increase and I am trying to prepare for a college course exam I am supposed to take tomorrw.
Taking an exam is very very difficult for me and my neck...
Anyway...I ahve faith that you can pull your self up enough to come up with some ideas and a plan to get on a new road...with your neck...some will be medical aspects and some will be emotional and metnal aspects...when we are so frustrated at our situations it will raise our pain so let me see if I can start there and see if anything I say will help."

I am so impressed with your willpower. That is amazing you are still able to further your education. I barely got my B.A. and am a veteran of the educational system - If I can offer any advice PLEASE let me know.



"With your injury come a degree of Loss! Same as me.... I grieve the loss of the things I am unable to do...the loss of the "way things once were" the loss of my life as I was accustoed too....just to name a Few!!! because there are many of them.
Once I realize that I am grieving I then Give myself permission to grieve! In that also comes some other emotions and feelings that I give myself permission to feel. It is important to give ourselves permission to have the feeling the emotions etc....why? because they are OURS and they are ReaL!!!
The next thing I do is put a realistic time frame to allow myslef to feel thess things...and process them a bit. If I stay there to long I can get stuck there whcih is not good for me...
By the way I am not saying you need to do any of this...only sharing what works for me!!!
Once that time has passed I have to start to come up with some ways to resolve some of the "stuff" sometimes all it is is just "acceptance which means I need to surrender first...not give up but surrender! Some things are the way thaey are and that just "IS" for the moment....
Other times there is some footwork for me to do! Examples>>>
Finding some immediate help! this can come from some different sources....but it starts with being honest with myself and those around me...I personally need to tell my family and close friends that I am having a difficult time...then I tell my docs...my GP, my PM, my ortho, my psychologist...either alll of the above or start with the one I feel would be most benificial...
Then with the docs help i can get a plan of action going!
I also keep very documented records of my pain and my activities and what and when I take my meds....This I may need later to show my docs a pattern of pain or something along those lines...I keep trak and rate my emotions and I also rate the pian... good things to do...it would be good to have that especially if trying to start a relationship with a new PM...
Matt...I hope sharing some of the ways that I try to deal with my Chronic neck pain...will help you...
I hope that you will drop in and read on the PM board
Hugs and prayers...
Sky[/QUOTE]"
Great advice! Thank you so much. I will head to PM board later tonight when I time. Prayers to you also, friend. Matt

matt3507 11-11-2008 12:09 PM

Re: Barely hanging on. Long post, sorry
 
Hi feelbad: Thank you so much for your response.


"[QUOTE=feelbad;3787686]matt,you have gotten some very wonderful advice and just words form those of us who just know what you are going thru right now. you are NOT alone there,trust me on that. i am wondering if you have even actually had even a MRI done to just really see what is generating all this pain? in order to have the level of pain you are having,something has to be causing it. finding out just what that is will really help in just confirming that there is a very valid reason for what you are feeling,like its not all just in your head type crap?"

My last PM doctor, or for that matter all docs. I have seen never really gave me a black and white "here is the problem". My mri shows ddd, arthritis, bulging disc c5-c6 on right, severe forminal stenosis (partial numbness left arm and hand). It has been 2.5 years and I can carry a few schoolbooks, drive, and walk a little. This last doc. I saw beat me up, chatted on his cellphone, 1.5 hours late, told me my prob. is hypoanalgesia. First time I heard this word. My last PM I had said I need to learn to adapt and move on. She believes that immobility (I kept my back in whiplash position for 2 years, like a statue) is the cause of my chronic pain and that I will never be the same. Tension in the neck muscles are my problem. I have read about this. I have heard it called the "handcuff syndrome". 6 months arms behind your back, they will never move again. I don't want to agree with this. I have had 3 day stretches of my old self, but I have always crashed back into headaches and spasms. My headaches started right after my first visit with a PT. She gave me traction and my neck and back just crashed after that. My main symptoms are upper back pain and exploding headaches. For me it is ER pain that is unbearable (the headaches).



"you just sound very overwhelmed right now and could use something positive. finding out what is creating this hell is a big step in that direction,believe me. once you can find the reason,you just take that next step in finding out what you CAN do to try and get rid of it or at least make things more tolerable for you. just exacty what is occuring symptom wise and where is it located?"

Please see above.



"i really do feel for what you are going thru,unfortunetly alot of us have been where you are at or are there right now too. you DO have people here who understand why you are feeling what you are and that is huge for someone who is simply suffering thru anything. just knowing you are not alone and that someone out there really understands is what support is all about ya know? we are here for ya. just get some testing done if you have not already done this to find out what is simply wrong. hang in there matt. please keep us posted on how you are doing.marcia[/QUOTE]"

Thank you again, your post meant the world to me. Thank you! Matt

P.S. Any and all suggestions greatly appreciated.

feelbad 11-12-2008 08:28 AM

Re: Barely hanging on. Long post, sorry
 
i would love to help you matt and give you the proper advice,but first we kind of need to know just what your issues are or if you have actually had the MRI done yet to find out? the more info we have the better advice we can give you,thats all. Marcia


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