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Posted in: Chronic pain, and Surgery.

I want to get better but I feel so much change that I feel lost

Started by alicia on 08/02/2011 4:15am

I get very nervous every time I try to do my stuff because everything feels so extremely different. I am fused c5- c6 and I had other expectations. Do some of you prefer some of the pain you use to have instead of the pain in the neck when you do everything?

I am sorry, I am really very lost, I feel like a total different person. My energy levels are very low. I don't take pain meds, I manage what I have with klonopin.

Is difficult for me to be interested in other things, I guess I am waiting to be me again.

I don't know if I have to expose myself more. I get so so sad and nervous when I see my friends so normal. I get scare. I want to be able to accept this and believe I can be better. The surgeon told me I could do whatever I want after a while but it seems to me I felt better doing the things before the surgery, everything was more fluent, the pain did not make me feel like another person. Not able to move my neck as before confuses me in my daily living. Is as is my mind is expecting something but my body another thing. I am scare to go out and be with my friend and not be able to be friendly.

I was so much hoping operation was going to grant me more security, but kissing, cuuddling is totally different and weird. I feel mentally lost, confused. My energy levels to do things are incredibly low.

I went to visit my nephews and in my head I wanted to play like I use to with them, but I was there with them in pain, sad but smiling. This is a real nightmare for me.

I really don't know how to make it better. I have to forget my old me? Belief that I will be better?

Has it happened to any of you, that you had pain in your arms, but could still do stuff and no pain in the neck and after surgery now you have constant pain in the neck?

Do you think you felt better before surgery? Does it gets better?

I am sorry to writ so much, I am just so very anxious, I was wanting so much to be able to play with dogs, go in the floor with them, walk them without fear. I get the feeling that I was less vulnerable before surgery, I think I was more scared of hurting myself (I did have pain) but not this much or not this strange feeling.

I know many don't notice their lost of range of motion, for me its been a desconcertating, it makes me feel like another person. All of this... wow!

Alicia

I am going to the doctor on thursday

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Hi Alicia, I have my l5-s1 fused March of 2011. I feel alot like you at times. I am better, the surgery was VERY ROUGH. The recovery is hard work and very exhausting. I guess for me I am very afraid to do anything. The slightest thing that I feel that dosen't feel right I freak out. Its a very strange feeling, so scary. Everytime I go back to surgeon for check ups and they do a xray to see how fusion looks, which I'm told I healed great and is completely fused, I look at the hardwear in my back and I just want to cry. I guess for me its not normal to have screws and rods in your body and to see it on an xray! My relationship with my fiance has become very strained. He says I'm a totally different person and worrys I may never be myself again. I try and somedays feel like my old self but then something happens and I just freak out. It was major surgery we had and I've heard can take up to a year or longer to recover. Antidepressants may help, but I don't want to take them. Your not alone I think we all have some fear. Always here if you need to talk. Good luck to you, Maryann

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Hi Alicia, I too am having alot of difficulty resuming my old life. I'm not sure what is causing me to feel the way I do. In Jan 2011, I had a multi level fusion L-3, L-4, L-5 done with a minimal invasive procedure. I guess I expected to be back to normal within a couple of months, but that has not been the case for me. To me, it has been a nightmare. I can't get any good, restful sleep since the surgery and for 3 1/2 yrs prior to the surgery. I'd sleep for maybe 4 hours and the pain in my back would wake me up and I would have to get up and take something so I could get back to sleep. I am extremely tired to the point of weary. The surgeon who did my surgery really didn't explain what I should expect but I never expected this. It's been 7 months now since he did the surgery and at 5 months they more or less booted me out the door, a PA telling me that I would have to find a pain management doctor to take care of me. This is after my insurance had paid them and we had paid in full what part we owed. Now they won't return my calls. The pain management doctor I have seen once, she cancelled 2 visits I had prior and when I did get to see her, she didn't have my medical records from the doctor and seemed more interested in training her new PA than talking to me. I am still having really bad pain in my spine area. I am taking the hydrocodone pink 10 mg and it makes me itch and have hives and when I did research I discovered that that was considered a medical emergency and I called and told them of this and they called back and told me to take a half of pill. I don't know if the meds are making me feel so tired and weak, or if I have reached the point of exhaustion, but I can barely take care of myself as most of my family doesn't help me and believes I should feel "normal" I guess. I don't leave the house for weeks at a time because I feel so bad and I don't know what to do or who to turn to anymore. I'm sorry that ths is so long but I have found that the only people who can truly understand what we are going through are the ones that have been there. It's horrible to feel so alone. I hope in time you are able to get your life back. After all we have been through, we deserve it. Thanks, Mary

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tesa313,
I so feel for you. I teared up just reading your post. I had a l5-s1 fusion in March of 2011 and have just started feeling...ok. I was taking Norco (pain killer) but weaned off them and now I take ultram, lyrica and muscle relaxor only before bed. Are you going to PT? I started that 5wks after surgery and has done wonders for me! I am not in the pain I was in before surgery, but feel very limited and I thought as well I would be doing better by now. I honestly feel that we may never feel the same. I think its a mind set we have to set used to. My surgery was not a mistake, but I as well was not made aware of how difficult this was going to be. My surgery is awesome as well as the pain mgt dr I have. The two offices work together and I'm lucky. I have alot of fear of hurting myself again and I honestly do not know how I would make it thru this again. Good Luck to you, I'm always here to talk were all going thru the same thing and it does help to talk to others! Keep in touch

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Thank you very much for your comments! For me it has been confusing... I think depression alters your mood, but my experience with antidepressants is terrible. I know it works wonders for some... I need to go out and walk today and do my neck exercises and organize myself, but it is so frustrating to feel my neck so different. I think regret is the worst. I understand that all doctors should be very aware of the medicines the person is using, to offer the person aerobic exercise to see if it works before offering any surgery. I should look forward, but I am stuck in the past and the things I like to do. They say to do them any way and little by little one feels better. I start doing it but then I get drained. Sometimes I feel that people with conditions that are not from the spine can manage better, or maybe people that have fullfill must of their dream. I say this because I use to have other pains and I could manage them much better.

If only I could turn back... there is no way. So have to wake up and walk, try to organize room, and head, read a story without wishing to be them. I used to be very expressive and hyper and all my friends are the same. AAAAAAAAAAAaaaa I don't want to wine anymore, I just think that I thought I try before the surgery, and now I am tired of trying as if I lost hope.

I wonder if some of you got surgery because a lot of friends told you so...

I imagine my old self and say well I could do that, but wow I don't know. We have to try. I wanted to travel all the world, and continue my work with communities, but I don't feel that sharp! I have lost a year and half suffering for this, so I have lost practice. Pain is dangerous it can suck you in such a dark place that leaves you hopeless, one is just waiting to be free again. For me the worst part is noticing that I prefer to be like before, really! That time passes by... and friends continue their lives... Sometimes I feel ok, I'll get out of this but then again... if only I have heard my neurologist more... I wish I could be like the soul surfer or all those people that move along! What I think a lot is sadly but true that I wish there is heaven, and that this world let me go, so I'll be free of pain and be able to enjoy life in a different way. I pitty myself I know, because I see me having fun with my friends, doing a good job which required movement, dancing, and jumping... so I stay away I know people don't like winners. The reality is that is not there fault that one is suffering.

Well thanks again,

Z

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Thank you very much for your comments! For me it has been confusing... I think depression alters your mood, but my experience with antidepressants is terrible. I know it works wonders for some... I need to go out and walk today and do my neck exercises and organize myself, but it is so frustrating to feel my neck so different. I think regret is the worst. I understand that all doctors should be very aware of the medicines the person is using, to offer the person aerobic exercise to see if it works before offering any surgery. I should look forward, but I am stuck in the past and the things I like to do. They say to do them any way and little by little one feels better. I start doing it but then I get drained. Sometimes I feel that people with conditions that are not from the spine can manage better, or maybe people that have fullfill must of their dream. I say this because I use to have other pains and I could manage them much better.

If only I could turn back... there is no way. So have to wake up and walk, try to organize room, and head, read a story without wishing to be them. I used to be very expressive and hyper and all my friends are the same. AAAAAAAAAAAaaaa I don't want to wine anymore, I just think that I thought I try before the surgery, and now I am tired of trying as if I lost hope.

I wonder if some of you got surgery because a lot of friends told you so...

I imagine my old self and say well I could do that, but wow I don't know. We have to try. I wanted to travel all the world, and continue my work with communities, but I don't feel that sharp! I have lost a year and half suffering for this, so I have lost practice. Pain is dangerous it can suck you in such a dark place that leaves you hopeless, one is just waiting to be free again. For me the worst part is noticing that I prefer to be like before, really! That time passes by... and friends continue their lives... Sometimes I feel ok, I'll get out of this but then again... if only I have heard my neurologist more... I wish I could be like the soul surfer or all those people that move along! What I think a lot is sadly but true that I wish there is heaven, and that this world let me go, so I'll be free of pain and be able to enjoy life in a different way. I pitty myself I know, because I see me having fun with my friends, doing a good job which required movement, dancing, and jumping... so I stay away I know people don't like winners. The reality is that is not there fault that one is suffering.

Well thanks again,

Z

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Alicia,Yes we understand ur pain n thoughts.But it is what it is,we all have changed ourlifestyle,n doing nomal things is painful. Ive been dealing w my spinal issues since jan of this year n had my surgery in march.The deppresion got so bad I was spiraling down n it was affecting my family life. Felt hopeless n alone. Psycho therapy is a must.A little for instance, . This past Friday was a special wedding I had to attend, I pushed my self, to b there w a smile and have a good time,wore my tens belt under my gown took some extra percs n was detemined. well, Today, I suffer in pain,But I dont regret it, My point, the pain will always b there but certain memories wont. So try and push yourself mentaly, and do what is most important for u, even if its a once n a while treat out w ur friends,It will b woth it the next day and help u mentaly get stronger to fight. Again, pain w still b there, but try.Dont give up on what makes u most happy, It SUCKS enough we have to deal w these isssues. DONT LET IT WIN. And as far as pain management and surgeons, Yes once their finished w us the boot us out (and im a nurse). ur better of going back to ur primary,( If u like him) otherwise find one u do. The correct doc is the most important, just bring ur paper mre Reportsw w u, primaries r easier to see, n if compassionate enough due to ur diangnosis, they will help u with ur pain managemant alond w ur other meds. You stopped all ur pain meds? that I can see bu u should b on an anti-inflamatory and anti-depresent.It takes at least 2-3 wks for any class of these meds to start n work n hit a therapeutic level, Dont expect an overnight fix like pain pills,and as far as itch,very common, any any pain med, make u itchy,as long as its not out of control itch!.. Good luck on your journey to getting better. RENE :)

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Its been 6 months since my fusion surgery (l5-s1). I am definetely not in the pain prior to surgery. Now its just different. I am taking tramadol, celebrex, lyrica. I have been getting really bummed lately. I guess I thought by now I would be so much better. I don't know if I'm expecting too much. Went to the Chicago Bears opening football game and was completely miserable. Was hot and that seem to make my back more ache, cramped in a seat and couldn't stretch out much. I did get up and walk around which helped, but when in the heck am I gonna feel like I can handle this. These are normal activities that I think I should beable to tolerate and I'm not. It really gets me angery. I want my life back and its taking way too long and its very hard. I'm still in PT and doing work conditioning. They are trying to see if I can come back to work, my back is a work related injury. I had a fuctional capacity test (fce) run and did not do well. My results came back that I can not return to my job and at this point I would only beable to do a sit down job with limitations. This whole process is very fustrating to me and not handling it well. Anyone who any info would be great, thanks

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Hi everyone, I am 8 months now post op fusion on L-3,L-4, L-5 and this past 2 weeks have been horrible. I had severe spasms for about a week and then the severe pain set in. I wasn't even able to stand up straight for days and had to even start using my walker again to get around the house. I called my doctor and talked to his nurse and she told me that somebody wants me to have an MRI on the area where they did the fusion to see what the matter is with my back because I shouldn't be in as much pain as I am in. My doctor and his PA was in surgery as always on Mondays, so I don't know who made this decision. I am worried about the MRI because it is metal in there. I was told it didn't matter cos' it's titanium and it is not affected by an MRI. I don't know if this is true or not. DO any of you know? Thanks, Tessa

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HI Tessa,
Im sure by now u had ur surgery or a plan..keep us posted..good luck, n feeel better :)

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