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Im am so frustrated

iowarobiniiowarobin Posts: 1,268
edited 06/11/2012 - 8:33 AM in Depression and Coping
~X( I had my 2 level PLIF seven months ago. I have been on fentanyl patches since pre surgery and have been trying to wean off meds. Sothis is the second time I have gone down on patches. Well its not working. My pain level is at an 8 with the patch and oxycodone 30 mg evey 4 hours. I feel like I am not getting better. I have this tumor thing hanging over me, and still have remnants of pnuemonia. I slept like 16 hours Sat. I cant walk far, hurts to much. I called ortho to see if I could get in today. Back pain from hip all the way to rib cage. This is new. Think I did something, therefore the call. Cant take much more. I am on antidepressants and have been for a couple years or so. They are helping, just needed to vent. I am so sick of hurting. I am supposed to be getting better. Cant a girl catch a break? :''(


  • I'm sorry to hear you're still having so much pain. Did the Surgeon say he was going to remove the tumor or what do they do about it? I hope you feel more pain relief and it's normal to get frustrated. You will get through this and it's okay to vent here. I'm sure I speak for many others we're here for you. Take care. 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'm so sorry you are feeling so bad. You've been through a lot, and have every right to be frustrated and vent. My prayers and thoughts are with you.
  • I can understand the frustrations . I am sure not like you have had. I had taken Lexapro a medicine for depression for over 3 years. I understand the depression side of it too. I will pray for you .

  • Just sending you a >:D< hug and a shoulder to cry on. If you get in to see the ortho, I pray that he's attentive to your needs and can provide some relief. There is no doubt that you've been through the ringer and deserve a BREAK!

    Sending you comforting and healing thoughts,

    Take care,

  • Hi Im Debbie and am new to the site however feel your pain and frustration I am 80% bedbound and have been since April. Scheduled for S1L4 laminectomy and fusion in August My nerves are gone so to speak Am post laminectomy S1L5in 1985 and have been disabled sinve 2001 have severe DDD,and DJD I am on Oxycodone,Flexeril.Valium.Celexia and still want to cry all the time My thoughs and prayers are with you and we all need to hang in there justa little while longer at least thats what they tell me
  • I'm so sorry to hear you're in such pain. You need to get relief from the pain and then go from there with adequate control. As I'm sure you know, unrelenting pain causes a person to tense up and hurt worse so before you can lower your pain medication you need to have at least temporary relief from the pain. You definitely need to break the pain cycle so your body can relax and regroup, so to speak. I hope your doctor can help you achieve that! >:D<

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • you can see by the way people are posting for you that we all care for you. if we can only get you headed in the right positive healing direction. i'll be thinking in a positive way about you and one of these days youll be back on course. thinking of you...
  • you can see by the way people are posting for you that we all care for you. if we can only get you headed in the right positive healing direction. i'll be thinking in a positive way about you and one of these days youll be back on course. thinking of you...
  • I am so sorry to hear that you are going through all of this, you're right, when can you catch a break??!! I hope that you get to see your ortho soon, and get some answers and help. I also hope that you kick this pneumonia thing, it's been way too long!!! Until then, sending you some strawberry rhubarb pie to tide you over, and bring a smile!!! Feel better soon!!!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • Thanks for the love, I can really feel it. I go to ortho tomm at 10. I hope he can find something that is causing all this pain. I will update when I get home, but again thanks. Everyone here has been so good to me though all of this. It makes me feel so warm inside. Talk to ya tomm...Nighty Night
  • Dear Robin,

    Please let us know how your visit goes today.

    I completely understand the frustrations you are feeling!

    Your mind is so ready to start walking and "getting on with the show", but your body keeps telling you no. When this happens to me, I tell myself that there HAS to be a reason beyond my comprehension. Maybe it's to prevent a fall, as my body is too weak and needs some more rest time? Then I'll think... "Oh great, more rest time... ugh! How much rest do I need? That's all I do is rest, rest, rest!"

    My surgeon once told me that in the "old days", people were confined to laying on back boards and resting for months and years.

    When I think of that statement, it helps me. Although I may be confined to bed rest, at least I have a comfortable bed with tons of soft blankets and pillows. I also have an awesome heating pad I can use for additional relief. We have our TV's and internet for distraction... something they didn't have in the "old days". And, our pain medicine. The list goes on and on, when you start to think about it.

    I'll be anxious to hear how you are doing today and what the doctor says.

    Much love to you my sweet friend,

    Tammy >:D<
  • Hi, I have been thinking of you. I'm glad you are going to the Dr today! What did he say/do? I hope you get some pain relief so you can rest. I know if you could get the rest you need your body would heal faster! Sometimes I just wish I could sleep until I wake up feeling better! But my body/mind doesn't let me! You are much stronger than you know! Here you are with so much pain, pneumonia, and the tumor, you have so much to deal with but here you are giving kind, helpful advice and concern to other members daily. I'm sending hugs and good wishes your way. I hope you get some rest and peace, some relief from pain today! Good luck! We're waiting to hear from you.

  • I'm thinking of you today, too. Isn't wonderful how many people are thinking of you? Do your palms itch?

    I'm anxious to hear what the doc says - hopefully it'll be some good news, finally.

    I'm sending you big gentle hugs.
  • Just got back from the ortho visit. He did Xray and said it looks good, but that it is only a picture looking down. He examined me and thinks that I might have a screw hitting my illium? or bmp grown too much or many other mechanical positibities. So he has arranged for a CT scan next Tues at the hospital across the street. Yah, another 2 1/2 hour drive there and 2 1/2 hours back. But at least, he will get them read right away and I see him right after the test the same day. Mean while, he gave me medrol dose pack to try to relieve some of the inflammation. He says if he doesnt see anything on CT, he will then do a MRI. He wants to think it is something fixable, like a screw. Or maybe the fusion is good enough that we can take out metal? Or it just needs to heal more and is a bad flare? But he is going for MRI if CT isnt showing anything. So..another week...another test or 2. Pretty soon I am gonna glow... =)) But as I walked in he hit me over the head with a clip board and asked me what he was gonna do with me. I looked at him and said"I have been a good girl. I didnt do anything". He smiled and said, I know.
    As far as the tumor... :? :W =; I dont know cause no one has called me back after two messages. Must not be earth shattering or I am sure they would have called. Either that or I only have a couple more days and they decided not to worry me about it. :W
    But thanks to all of you for helping me through all of this. I am not EVER gonna say whats next again. Learned my lesson on that. Will keep you updated to whats up when something changes. I just wait and wait and wait. Paitience is a virtue. Hmmmm. Maybe I will go to the therapy pool tonight and put the floaties on and drift my mind into a more pleasent thoughts! Take Care and HUGS to all...
  • Robin , I am so sorry to see that you are hurting and not doing well. I truly hope that the doc will be able to figure out what is going on with you so that you two can get you on the road to recovery. Please keep us posted as you know more. If there is ever anything that I can do for you then please just let me know. I wish you the best....take care....Miki
  • I'm still keeping you in my thoughts and prayers. I really hope the CT shows whatever the problem may be so you can be one step ahead toward getting this problem resilved, whatever it is! So you don't have to keep waiting and waiting and wasting more time in pain than need be!!

    Take care and keep us informed here. I hope you feel better today!
  • why dont u play some sports of ur intrest it helps alot in fighthing away the depression or do any active activity of ur intrest it will keep u bz n u will be less depressed n thier will be no need of these medication
  • Was put in hospital last Fri for pain managment and was there until Tues am. Got out and went to Ortho for CT. Top is fused and bottom is fusing but at slower rate. No problems seen,so will have MRI with and without contrast Weds. I had to go up on patch to 100 mg and use oxycodone 30 every 4 hours and ativan for muscles spasms. Need to call orto tomm to see what he wants to do if I am still in that much pain. Trying to keep my chin up, it is just so hard. I really appreciate all my friends here that are trying to help me. Its a rough time in my life, a time I should be having the most fun and happiness. But I am a survivor, so I will make it one way or another. Thanks all, for the kind words and helpful suggestions. I appreicate you all!!!! >:D<
  • I have been reading your post. Pain is so all-consuming! I just want you to know that you are in my daily prayers that I say for all spineys here. Glad to hear they admitted you for some pain control, been there and done that so I can empathize. I'm in a bit of a flare up from having too done too much, but am having fun with my spiney friend visitor, Liz.

    Take care and hope they find an answer with the MRI.

  • It's good to see you are fusing and they are not seeing anything "wrong". I hope this will pass for you and soon!

    On a happy note, A guy I have casual contact with online, not here, was back with a couple of emails yesterday. Seems that without rhyme or reason 90% of his pain simply went away! It has been gone for several months now, so there has to be hope! For all of us! He was doing some ablation and some other form of shots, but his pain resolved itself in the wrong time frame for them to be the reason, so he is hopeful it will stay resolved.

    EDIT: Wanted to add, The guys docs were so perplexed by his remission they sent him for Ct and MRI scans with and without contrast for BOTH! Their report is that from the looks of things nothing has improved and he should still be in pain, but he's not!
  • I am glad to see that your doc is taking you seriously and is doing everything he can to find out what is going on and to try and alleviate your pain. He sounds like a keeper! Hope you are doing better today.

  • >:D< Oh, sweetie, I don't know how you even function to post on the forum with all those pain meds. Please tell me there's someone driving you to and from your ortho appointments.

    You are in my prayers for healing. Sending you lots of hugs >:D< >:D< >:D< and a shoulder to lean on.

    Stay hydrated!

    Take care,

  • Hi All, It is Sunday afternoon and sunny, both outside and inside( ya know what I mean). On Fri the ortho told me to go up to 150 Fentanyl patch. I thought it was tooo much. So I went to 125. Along with that and my loving husband having me do absolutley nothing but rest, and taking my Ativan all the time, I am at a better stage today. I took my oxy and ativan last night at same time, and fell asleep about midnight and slept straight through until 9:30 this morning. I woke up once because I fell asleep with my arm on computer mouse and the laptop kind of fell backwards and scared the h*** out of me. But went right back to sleep. I dont think I have slpet that many hours in a row forever. I got behind on my break thru meds, but I am catching up and feeling rested. It is amazing how sleep can refresh your person. I have been only getting about 3 hours a night and I think that makes it really bad. Anyway, THANKS to all of you who have helped me the last few weeks. On Weds I will have MRI with and without contrast , so I know that I will finally have a definite answer to what the problem is. Either that or he is gonna do a look see or some other options. Look see operation does not sound like my first choice. But answers is what I need right now.
    Pain level is about a 7, 6 if I am a really good girl...Keeps going down back or right leg, makes me think MRI will show something. I am just glad that I am fusing. Was so worried with all the pain.
    I hope that with all my problems, that I can be as helpful to you as you all have been to me. It takes my mind off my problems when I can think about helping others. Its my nature. I love to help others. I would volenteer at the hospital, when I have my good days, but realized that there isnt much I could help them with. SOOOO...maybe when I am completely healed..like next week or something,LOL. If any of you have something that I can help you with, please ask. I am so grateful of all my friends here, that I dont think I would have made it without you. Seriously, I had many dark, dark days. It was U that pulled me through. And, I expect that I will probably be whining to you again. And I know that I can count on all my friends here, Thank you from the bottom of my heart. You are the Best. I am blessed.Hope all of you are having a good day, both pain and emotionally. Till we chat again, HUGS >:D< >:D< >:D< Love, Robin
  • Good luck with your MRI tomorrow. I hope the dr. can find a way to relieve/reduce your pain levels. You are so brave and I admire your courage...you have so much to deal with yet posting to help others too.

    Whine any time you need too...go for it, whine long and clear, let us know so we can be ther for you!

    Good luck and keep posting your updates.

  • Dear Robin,

    I will be thinking of you, as always, and hope the tests aren't too uncomfortable tomorrow.

    It sounds like your doctor is very anxious to find out what is going on. I know you are in good hands.

    Best wishes, many prayers and lotsa love to you,


  • Well the Ortho visit was yesterday, and nothing bad showed in MRI, there was a couple of bumps that are unexplained on the opposite side of where he went in. But he thinks it is still mechanical. I have updated the whold story in Surgery forum.
    My hopes are a little bit higher knowing the fusion is going well, and nothing is obviously apparent. Today I am wiped out from going to have MRI on Tues and the 2 hour round trip car ride, and yesterdays 4 hour car ride to the ortho and back. It is the worst thing for me, riding in car. At least I have really good friends who like to take me. The trips is always more fun with friends.
    I am trying to stay positive, since everything looks ok, and fusion is working. I just hope that if we take out hardware the pain goes with it. I hate being on so much pain medication and my ortho and I discussed it yesterday. He told me that right now it is needed to keep me comfortable while the fusion continues and that we would work on getting off them as soon as I can. He told me of a woman sent to him and her GP had her on 300 MG of Fentanyl pain patches. I thought that 125 I am on now was way to much. So, I am thankful I have not had to go to that level.
    I hope you all are having as painfree day as you can, and know that I am thinking of you all and how much strength you are giving me right now to go on. I couldnt do it without my family and friends. Its nice to go to sleep at night, knowing how many people care. Gonna take another nap now. Will keep you posted, when anything changes. Hugs to you all. >:D<
  • Sorry that you had to go through so much these past few weeks, and I'm relieved your doctors are taking good care of you. I hope the new dose of Fentanyl does you well. By the time I reached to 100 mcgs I found that I had grown tolerant to it because it didn't help my pain like it once did. I switched over to MS Contin which is less potent but I had to because of the cost of the patches. I took 180mg a day of the MS ER and up to 75 mg's of the MS IR for breakthrough pain. I was taking all this while waiting to have a pain pump put in. I am now allergic to Morphine so now I'm on 80 mg's of Oxycontin a day plus 40mg daily of oxycodone. I hope to have surgery soon to implant a pain pump with Dilaudid in it. Have you ever considered trying a neurostimulator or pain pump if more surgery isn't an option anymore? I hope that my procedure will be more effective than taking oral medication. I'm in constant severe pain all the time and have nerve damage in my leg. It's so tiring to deal with all that and the sciatica and muscle spasms.

    Anyway, I know you're a super trooper (not like the movie!) and that you are strong and resourceful. We are with you and pray that something can help you with your pain. Nobody wants to see their fellow spiney in so much pain. I understand what you are going through and I want to let you know that I'm here whenever you need somebody to talk to or just vent. Take care and please keep us posted >:D<
  • >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D< >:D<

    Hope you are feeling better soon girl!
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