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Sick and tired of being sick and tired

nursedina001nnursedina001 Posts: 234
edited 06/11/2012 - 7:30 AM in Back Surgery and Neck Surgery
Almost 4 months post PLIF and I am slowly getting worse, not better. In the past few weeks I have developed a back aching that goes from my waist to my mid back, straight across. I have also developed a horrible burning pain in my right buttock that gets worse when I stand up.

Doc seems to think it is from SI joint and has ordered an SI injection and then try for physical therapy again (every time I try, pain gets worse)

I am just feeling so depressed and overwhelmed and I just want to be better again.

I am only 40 years old and I am spending my days laying on the bed with a heating pad.

I guess I'm just looking for a little support. No one out in the "real" world seems to "GET IT". They all keep telling me to hang in the there!! And not to get discouraged but they are not the ones in pain 24-7, they are not living on narcotics and can;t go to work to support their kids, they are not living this nightmare ...

thanks for listening to me blow off steam... :)



  • sunny1966ssunny1966 VIRGINIAPosts: 1,385
    I'm sorry that you're having so much pain. I know how frustrating it is. Even more so for you since you had surgery to 'fix it'. I'm sure you feel like it was all for nothing. You're right about the people around us not understanding. I admit I was one of them until I started dealing with it myself. Now I understand all to well and I get so aggravated with myself because no matter how much I want to do things I just simply can't and it's hard to face that fact. I hope that they can do something to help you. If you want to let off steam or whatever feel free to pm me anytime. Take care
  • Sorry you are having these problems, being in constant pain is, well, a 'pain' :p

    Could you be having inflammation? You say you use a heating pad, have you tried ice packs instead? I find that when I use a heating pad, it increases my pain, but ice helps, just a thought. Also, I know many doctors say NO to ibuprofen, but mine is not one of them, and I use 600-800 mgs up to 3 times a day, and it helps some of my pain more than narcotics. Of course, my tens unit has also brought my pain level during the day way down as well (God, I wish I could use it all night!) Might not be a bad idea to ask your surgeon if taking ibuprofen is OK. (but don't take it until, I still don't understand why each surgeon is different on this subject, but it may have something to do with the way they do the fusions, your history, etc.)

    I, too, am dealing with depression, and finally went for an appointment with a psychiatrist. (intake, still haven't had the actual appointment to start therapy, waiting for their call). It's difficult to live with pain for so much of your life, and slowly lose the ability to do all the things you used to be able to do. Many of us chose surgery hoping to be in that percentage that everything goes perfectly, and it's very hard to accept that things are less than so, even when you know in your head that you really aren't supposed to be back to perfect yet. Just remember many of us are having similar set-backs and are here for you if you need us.

    Take care of yourself, and keep looking for that light at the end of the tunnel!

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  • I'm sorry that you are in so much pain. Was there ever a time after your PLIF that you felt better and had no pain? Is your pain worse than it was before surgery? Have you had an MRI recently?
  • Thanks everyone for your replies - I'm in a big feel-sorry-for-myself funk.....

    Debbie - you are so right, it is so hard not to be able to do anything. My house is a mess, I do not have the physical strength or the stamina to clean it well, and it is so frustrating. I need to get back to work, but there is no way for that to happen right now. Thanks for the PM offer, I may take you up on that real soon :)

    Kat- yeah I know all too well about the depression thing. I have just recently gotten my zoloft dosage increased to help with the depression. I'm not a big fan of ice. I tried it and I'm not too happy with cold things against my body, but I am going to give it another shot tomorrow and see if it helps any. Thanks :)

    Pepper - yeah, I did feel better in the beginning. I never felt great, but I was doing wayyy better this whole time except for the past 2 weeks or so and it is getting steadily worse. Yes, I did have repeat MRI with and without contrast, 2 sets of xrays and a CT scan. She says they all look OK to her. The reports say otherwise though. I know each doctor reads them differently, but there are two pages of "things" that they have found wrong on my MRIs but she doesn;t seem to think that any of those have to do with my pain.

    I guess I will get the injection and see if that helps.

    I just feel like I am at the end of my rope and I know you all can understand. My family and friends are great, and they are very patient but I can tall that it is wearing on them and they are tired of listening to me complain all the time.

    Thanks everyone for giving me a shoulder to lean on :)
  • You are perfectly normal. You are really still at the beginning of your healing. It takes 1-2 YEARS to heal, sorry. Whatever your surgeon told you is not exactly true.

    Do you walk everyday? Walking everyday will help you heal faster, and doing "core strengthening" excersises.

    You just had a major surgery, and it's not going to get better as fast as we would like. But just to make you feel better, you're still early in recovery, and what your feeling is perfectly normal.... hang in there, and walk, walk, walk.....
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  • Please do try an SI injection. I had a 3-level fusion, and later developed osteo in my left SI joint...I understand your pain - SI pain can really hurt, and it's frustrating.

    After I had my injection under flouroscopy, the pain went away (still OK for now).

    I would also recommend ice - and not heat. If you are having spasm, ice is much better in my experience. And as to PT, do ONLY what you are comfortable doing - don't push past your limits. There are "easy" SI stretches you can do.

    Hang in there - by the way, you are NOT feeling sorry for yourself - this stuff is all REAL.

  • Lynnsy is right - you are very early in your recovery. There will be many ups and downs, good days and bad. New and weird pains and sensations will crop up for some time - especially as you add activity and as your body adjusts to its new spinal alignment. I am sure you have heard all this before but sometimes it helps a little to be reminded how early you are in the recovery process. I also know that 4 months seems like a LONG time - I am almost 9 months post ALIF/PLIF and still have new pains popping up and am a long way from being able to do the things I want to. It is very frustrating, frequently depressing, and having patience gets really old. (And as for house-cleaning - I found that at 4 to 5 months I could do about one task then had to rest - sometimes I could only do one a day.)

    About PT - I, too, found that my pain got worse with PT - but after several weeks I realized how much more I could do than when I started. (I let them know when my pain had increased after a PT session or with exercises at home and they made adjustments each time). If you can get aqua therapy, it is wonderful. Until you get to PT walk as much as you can - even if it is only 5 or 10 minutes around the house every hour. Also, heat feels wonderful but ice may be more helpful. And you might try TENS if you haven't done so yet.

  • I hope the injection helps, I've found the various ones helpful facet joint inj. to ESIs and even trigger points a little. The injections could break up the inflammation there. Best wishes and hope it helps. Charry
    DDD of lumbar spine with sciatica to left hip,leg and foot. L4-L5 posterior disc bulge with prominent facets, L5-S1 prominent facets with a posterior osteocartilaginous bar. Mild bilateral foraminal narrowing c-spine c4-c7 RN
  • I know we spoke in PM, but I just had to say something here. It's taken you this long to get sick and tired of it all? haha! I was sick and tired of it all day 1 postop!

    Gotta have my Zoloft and my counselor(now referred to pyschologist.) "Normals" don't understand if they can't see blood somewhere or a cut off limb, they think we are fine because we become good actresses(and actors.) I get sick of the, "Oh, you look so good!" when I feel like crap.

    The tornado that hit the inside of my house and made a mess probably came your way, too. I've had to give up thinking that cleaning is a priority. My priorities include trying to make it one day at a time without crying(too much) and make sure I say something nice to each of the kids. Someone has a quote here, I do not remember who it is, but it's something like, "It's OK to visit pity city, but you cannot live there." Made me think.

    I keep thinking that sometime some monk is going to pop up and say, "Angie, you have finally learned patience and empathy, now you can move on" like this is a test or something. OK, I'm a bit delusional sometimes but that's what it feels like, like I'm living someone else's hell or trial.

    Anyway, read my PM on the medical stuff.

  • Thanks Dina for starting post, because I feel same as you...
    my situation is different in surgery procedure, but I feel the same as you,(to bad you were not my neighbor, you could exercise by walking over here for coffee and a cookie...I can not walk but a few feet at a time right now...I'm 45)

    ERnurse---Bless you too.. because you brought up alot of things that i think might help me....can you tell me my mom and sis take zoloft and my sis swears by it. and mom... well daddy passed thanksgiving and since then she just been a mes and doesn't take her meds as she spose too. I have some medical background... If you have to P.M. me for answer please do.. but I take ultram for 15 to 20 years started way back then for shoulder prob. when doc brings up antidepressant(I get chills) oh I have tried quite a few but last week he put me on celabrex I had bad reaction first same doc(rhumy)has me on ultram)and knows I have gastro, swallowing, no gag reflex prob.what a mistake.. had me take first and only one in office that morn. (The7th)i ususally read about meds before taking... now he wants me to start celexia.. i have script but scared to take. I asked him while in office cant I take one thats been around for awhile.. but he just went on talking as if i never said nothing. I have worked side by side doc.s and know how it all works.
    My sis takes both ultram and zolft.. I myself know that could be a big no no. but works great for her.what do you think about mixing the two? my script for ultram is 6 a day 2 @ a x. i only take 4 a day because if i take after 12 noon I will be up all night. it perks me up in the morning. I call it my two for one lil pain relief lil anti pill.
    Doc also just upped my neurontin from 2700mg a day to 3600 over next month.and he was ticked off phsic gave me klonopin for muscle pain in upper back causing migraines. I understand the klonopin stuff.. But it worked from day one for me not ONE headache. and that's better then Imatrex for me.plus when grandkids come over which used to be everyday. My nerves never bothered me. Now its completely opposite. its the Saddest thing in MY LIFE right now. I have lost so much and had to give up so much.... but the grandkids thing is the worse... I'm crying now and all the time.. and I have new grand baby coming in few months.My daughter needs me, she was so used to grandma helping with kids they used to be here ever day and spent night least 5 nights a week have there own room here with bed and millions of toys. now its been months since they spent night and visit for very short time. some times I can handle one alone for few hours but that only is maybe once a month. its hard on the kids too. They(daughter and grandkids) live 5 min from my house.My single Son moved in with us to help me while my hubby at work. I need help and I know it...
    I JUST WANNA BE THE OLD KIND CARING PATSY. just me i wanna be me.Patsy
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