Can't stand at all, pain is at a high +10

Discussion in 'Fibromyalgia Main Forum' started by pitoune, Mar 29, 2009.

  1. pitoune

    pitoune New Member

    I know I've told you before that I'm in an electric wheelchair and that I have 8 herniated discs. The problem right now is that my legs are on fire and hurts so bad and that's been going on for 3 days now. I can't sleep very well at night because of the burning and throbing pain. I keep putting pillows under my legs but no relief with the pain.

    I've seen doctors after doctors and they've all told me that I would have to paralyse before they would do anything for me (afraid of law suit if I do paralyse during surgery I guess). With my Fibro, I also have DDD and that's why they won't operate to fix the hernia. They told me that even if they were to fix one, two more would appear because of the DDD. In the mean time, I'm suffering and I don't know how much more I can take. I eat Morphine like candy but they are not doing anything anymore. I guess I've been on the same dosage for too long now and my body must have adjusted. I take 30 mg slow release twice a day and then I'm suppose to take 10 mg if it gets too bad during the day every 4 hours. I've changed my dosage myself up to 20 mg but I'm now taking them every 2 to 3 hours and still, no relief. Some days like today I just want to end it once and for all. It's raining quite heavily and the humidity level is 100%, probably not helping me one bit either. Even if I'm in a wheelchair, I usually do manage to stand for a short period of time to do some chores like cooking and a bit of cleaning but it has to be for short period of time. Right now, I can't stand at all and that's scaring me to no end.

    Anyone going thru this???? Would appreciate some help in this matter

  2. clerty1

    clerty1 New Member

    I am so sorry you are feeling this way I wish I could help have you I have no answers as to what you can do but I am thinking of you and praying!!
  3. MtnDews

    MtnDews New Member

    I sure hope today is better for you. Maybe yesterday was so bad because of the weather. Sounds silly, but it sure makes a difference to me. Be careful with the pain pills, you don't want digestive problems too. : l Does heat or cold packs help you any? Really hoping today is much better for you.
  4. pitoune

    pitoune New Member

    Thanks for the well wishes but no, I'm not doing any better today. I've actually been worse than ever and that's the way it's been for days and days. I keep hoping that tomorrow will be a much better day but it's worse every time. Today I could not even get out of my bed cause I couldn't move my legs at all. Once my hubby, who thank God is on Holiday until Wednesday, heard me crying so much, he came and got me out of bed. I had wet myself again and felt so ashame cause he had to clean everything and wash everything too. I have a bladder problem and sleep with a diapper but it doesn't always hold it all, especially in the morning. Hubby rubbed my legs and got me in a nice hot bath but then I couln't get out of it. So frustrating. I'm trying very hard not to take too much Morphine as they cause me to go into severe IBS or I get severely constipated. Just don't know which way to go. Hubby took me to the hospital but all they tell me is that there's nothing they can do for me, to just tough it out. Well, I'm all out of that. I'm so scared that one of those morning, I will wake up and be completely paralysed. It's bad enough to hurt from the darn Fibro but this DDD is no bargain either. Thanks for listening to me. Oh yeah, I do use a heat pad and it does help me a lot. I just have to be careful with them as I'm really sensitive to the heat or the cold. I hope you're having a good day hon.

  5. DemonFairy

    DemonFairy New Member

    to get a doctor to operate, if you sign a waiver or something? It seems like with 8 herniated disks, there has to be something that they can do to attempt to make it better. At the very least, couldn't you get a higher dose of pain meds? Could you manage the constipation with MiraLAX or something like Relistor? Is the bladder problem related to the disk problem or something by itself? Have you tried to get it treated? I had to take Enablex for a while, which solved whatever weird bladder problem I had. No one was ever able to diagnose it and I never found anyone online with the same symptoms, but after a couple of months on Enablex, whatever it was, was fixed.

    It seems like there must be something that can be done to help you. Have you talked to more than one surgeon or gone on any of the spine/back pain message boards to see if maybe someone knows of someone who could help? I know I'm probably telling you everything you've already thought of, but better to ask, just in case. I couldn't handle having one herniated disk without having surgery, so I can't even imagine eight. Yikes. Maybe a Fentanyl patch would be better than taking pills, so you would have longer lasting pain relief and could take something strong for breakthrough pain, too. It just seems like there should be one doctor out there brave enough to try to do something for you. If you'd like, I'd be willing to send an email or letter to my surgeon, who has taught all over the world and invented some spinal surgery techniques - he seems like a good guy (uh, despite some bad press about one particular case...I'd still trust him), and he really seems to care and understand about disk pain, since when I was seeing him, he was suffering with a herniated disk of his own.

    I have no idea what email address I have associated with this account (I can't figure out how to update my profile with new information, as I set this account up years ago), but if you go to my blog (flippyodegard with the usual website appendage after it<g> - don't want to violate any rules), I have a current email address listed there. While I'm often totally wiped out with fatigue, there's nothing I enjoy more than a challenge to find a hidden answer somewhere for someone. Frankly, if I could spend all of my time doing internet searches, I'd be a happy camper. So, if you want to set me up with some info to track down something/someone to help you, I'd be glad to poke around. Even if you've already looked just about everywhere, perhaps the answer is still out there somewhere, waiting to be found. I hate hearing about someone being in so much pain, as I can't even imagine worse pain than I was in before I had my surgery.

    Hang in there and don't lose hope. With a board full of people, there has to be someone somewhere with some info to help you.

  6. charlenef

    charlenef New Member

    they have new machines out that gently stretches your spine to help discs recover without surgery you might want to look around at a dr for them it is called drx9000
    I think it is a chiropracter that uses them[This Message was Edited on 04/02/2009]
  7. DemonFairy

    DemonFairy New Member

    I looked into that before my surgery, and the problem with them is that they're really really expensive and I've read that after a while, the pain comes back. Now, if I was filthy rich or had insurance that would pay for it, I'd definitely try it and I tell other people to try it, but I think there are very few of us here who can afford to experiment with something like that, if there's a good chance that we'd end up feeling the same way soon after the treatment stopped. But, if Froggy can afford it, and she can't get a doctor to operate, would a chiro be willing to let her use one of the machines? Seems like it might be a vicious cycle of not being able to get help. I know I'd definitely ask for more pain meds as her dose isn't that high for someone with 8 herniated disks.
  8. pitoune

    pitoune New Member

    He will not refer me to a back surgeon. He did refer me to a pain specialist but believe it or not, he turned me down giving me a prescription of Morphine and a letter to tell my doctor to keep giving them to me. I would love to be able to see a back surgeon but I can see them without a referal and I've asked so many times, I've lost count. 5 years ago, I only had the one herniated disc and that was bad enough. When hubby got transfered here (Ottawa, Canada), after 2 more years of fighting with the doctor, they did send me for a full back MRI from the neck all the way down. That's when they discovered that I had 7 herniated discs and several buldging discs and told me I had DDD but still no referal to a back specialist even if I did asked them. Two years ago, while holding a big jar of pickles and trying to put it on the table, I herniated another disc. The only thing I was told last year when I saw the pain specialist was to hang on, that the techology does change a lot and that within 5 years or so, they should be able to fix my back, duhhhhhhhhhh!!!!!! I don't have to tell you how long that is when you're suffering the way I am.

    For the first time yesterday, I woke up paralysed from the waist down, lost all bladder and bowel control and that scared the crap right out of me. I had to let myself fall out of bed to get to the washroom to wash up. After a few hours, I did regain bladder and bowel control but I could not use my legs to save my life. Thank God, last night I could move my legs some. Hubby took me to the hospital but since the feeling had returned, they sent me packing after 9 1/2 hours or waiting in the waiting room. I came back crying like a baby. I have already told my doctor that I would sigh a weaver for them to at least fix some of the hearniated discs that are causing me so much problem but no, live with it. They didn't even do an MRI at the hospital and that really did upset me. I did show them the report from my last MRI which I always carry with me but they just tossed them aside so I put them back in my purse as I don't want to loose them.

    As for that machine you're talking about, I've already looked into it and no, I cannot afford it as it is extremely expensive here too. It's been over 2 years now since I last had an MRI for my back and would not be surprise to find out that I have more now. I was a fairly tall woman at 5'7" but I'm now down to 5'4" and I'm pushing it. I've been trying to get an appointment with my doctor but he's away until June. His replacement said she would give me my prescription but that's it. I'll have to wait for the rest of my problems. I don't know where to turn to anymore, just very lost and in so much pain and so tired of living like this.

    Thank you all for the help and the response,

  9. Pansygirl

    Pansygirl New Member

    Very gentle hugs just for you pitoune. ((((( hugs ))))

    take care, Susan
  10. faithinlove

    faithinlove New Member

    just a special hugs and a prayer to let you know that I am praying for you. I do hope you will feel better soon. PAIN is such a constant thing.It has a way of getting to you. God bless and lots of hugs :0)
  11. DemonFairy

    DemonFairy New Member


    I didn't realize that you were Canada. I know that trying to work through your system is a lot more difficult. My partner is Canadian and can't get insurance here (turned down for a false positive on a pap test many years ago, and has since had a hysterectomy so it renders that test moot anyway, but still ridiculous to be turned down for a FALSE positive), but we've discovered that when we have enough money to see doctors, it's free us up to see the very best by paying cash. Plus, most of the doctors will give you a discount for paying cash. So, luckily, even though we have annoying medical problems, we've been fortunate to be able to see the best doctors in the city (and a couple of them are considered some of the best in the country, too), which makes getting a diagnosis and treatment a lot easier...when we could afford it.

    That said, when I herniated my disk, I was having bladder problems at the same time, which really really worried my chiropractor due to the possibility of Cauda Equina, which is considered a medical emergency and is supposed to require immediate surgery. It sure seems to me that your loss of bowel/bladder control is the possibility of Cauda Equina. Also, I just talked to my partner, whose mom is still in Canada and has recently had bad back problems. We're assuming it's a herniated disk due to her symptoms, but she can't get an MRI yet. However, her doctor told her that if she lost bowel/bladder control, to immediately get medical attention because she'd require surgery. So, I don't know why you haven't been given the same advice. Although, I know that in Canada that if you have a lousy primary care doctor, you're kinda screwed. Anyway, the advice from my partner is to contact the Ombudsman of Ontario ( to get help.

    It's unfathomable to me that you can't get a referral to a back surgeon. If you can't get a response from the ombudsman, then perhaps you can contact a local politician or reporter. It's really depressing for me to see the situation you're stuck in, as we had hoped that we might eventually be able to move to Canada once my partner has gotten her citizenship here. She has nieces and nephews she'd like to see grow up (mine are already in their late teens & twenties, so I got the childhood years) and we'd hoped that we could move and also get decent healthcare. We know a couple of women who have gotten great care for breast cancer, but it seems like that unless your condition involves the possibility of dying, there's a chance that you might not be able to get the care you need. We've even been thinking of leaving Vegas to go somewhere cheaper in the U.S., but we're afraid of losing our great doctors. Honestly, if we didn't have any financial problems, the sky would be the limit with our doctors - they're willing to work with us to try just about any treatment we've uncovered with our research.

    Since I obviously can't get you any U.S. help, I'm still willing to see if I can somehow get you better help there. I've had some contact with a popular columnist there who writes human interest stories every week and maybe she'd be interested in taking on the health system on your behalf if you can't get help from the province. Just let me know and I'll give it a shot. I seem to have more energy for trying to help other people than trying to help myself, although my main problem is financial...and family stress-related. My doctors have been great.

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