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    Sleeping or more like not sleeping
    ricardo57 posted:
    I have a real problem with not being able to sleep right through the night. I either wake up every hour after about midnight or just stay awake. I've been awake from 1AM onward. I suffer from a couple of problems - dejenerative/bulging discs with siactic symptoms and then developed fibromyalgia nearly a year ago. I'm on med cocktails to hopefully improve all of those conditions but they don't seem to help. I also get a steroid epidural and nerve blocks in shoulders neck and jaw every 2-weeks. I guess that I could go to a vet and ask for s horse pill instead to put me out.
    bj1208 responded:
    hi and welcome to the support group -

    LOL - horse pills, huh! well I wish i could sprinkle fairy dust for everyone that has chronic pains and cannot sleep very well -

    I get about 3-4 hours sleep each night - and up the rest of the time - I can only sleep on my left side or my back and I do use pillows between my knees when sleeping on my side or under my knees when sleeping on my back - this does help keep the spine more straight and helps keep the tension off it -

    have you been examined/diagnosed by a spine specialist (Orthopedic Spine Specialist or Neurosurgeon Spine Specialist)?? if you haven't been it may be a good idea to see one and get an updated MRI/CT Scan - they can let you know what the best course of treatment options are. seeing a good pain management specialist may be recommended too so that you are getting the best treatments. Once you have been examined they can discuss sleep options too -

    hopefully this helps - please keep us posted - take care - Joy
    jsc321 responded:
    I have had chronic lower back pain for the last 12 yrs l1 thru4 are all herniated I've taken everything and finally started taking methadone which has saved my life and I can sleep and live like I did when I was younger you don't build up a tolerance to like other opiates and I take it once a day. Try that and see if works for you.
    BarbieJean1949 responded:
    Dear Ricardo or anyone else in this community who suffers: God BLESS you! Only someone who has suffered through REAL pain could possibly empathize with you!

    Almost 14 yrs. ago, after I suffered from a serious herniated disc in the L/5 - S/1 region of my lower spine, I made a huge mistake: I went to see an Orthopedic Spine Specialist; NOT an Orthopedic Neurosurgeon for treatment. After I'd already suffered through 3 failed steriod epidural nerve blocks that he performed in my lower spine, I was suffering so much pain I was willing for him to operate on me.

    FIRST of all: BEWARE of any Doctor who makes you any PROMISES regarding how SUCCESSFUL the outcome will be AFTER any spinal surgery! Sadly, MOST Doctors WON'T tell you this BEFORE they operate.

    My 1st surgery was to remove a herniated disc in my lower spine. Not only did the 1ST surgery fail: so did the 2nd AND 3rd surgery on my spine! As a result of scar tissue totally surrounding the herniated disc in my spine and continually pressing against my sciatic nerve (as a result of my failed 1st surgery), my doctor said he couldn't operate through the back of my spine for my 2nd surgery, but told me he must instead operate through the front of my abdomen, so he could access the inside of my spine. After he had removed the herniated disc, in it's place, he inserted a RAY cage into each side of my spine. Then he made an incision in my hip so he could chip off pieces of my hip bone and stuff them inside each RAY cage (supposedly so my spine would fuse into a solid piece when it healed).

    Two days after I returned home from the hospital after my 2nd surgery, I fell inside of my shower and landed on my left side: I was in the worst pain I'd suffered during my lifetime and the MRI revealed the RAY cage he had put into the left side of my spine had broken loose and the screw part was digging into my sciatic nerve!! So, I needed to have a 3rd surgery within only a month of having my 2nd surgery so he could remove the RAY cage that had broken loose. Unfortunately, he didn't replace that RAY cage, but he instead left me with only one RAY cage in my spine, in hopes it would stabilize it. I have been left with a permanently destabilized spine that kills me whenever I move in ANY direction, whether standing, sitting, or laying down!! Irregardless of what position I am in, I suffer continuously: you couldn't imagine all of the pain I've suffered during all these years!

    I explained my situation so you could understand that I totally empathize with the pain you must be suffering. I also have been diagnosed with arthritis in my spine and hip as well as fibromyalgia and chronic fatigue syndrome as a result of my failed spinal surgeries and I've been unable to work for these past almost 14 yrs. because I can't stand to sit or stand for longer than a few hours at a time. Stretching out flat is the only way I can get a modicom of pain relief.

    I have begun drinking a glass of milk before bedtime and also always wear a sleep mask, to keep my room totally dark, no matter what time of day. Praying to my Savior, Jesus Christ, is the only way I am able to get any rest. He suffered on that cross for ALL of us, and far more than any of us would suffer during our lifetimes! Believe me: Jesus understands ALL of our suffering and promises He will never leave nor forsake us!

    Anything legal you can do in order to get your mind off your pain, do it! I know water therapy inside a heated pool helps, so I'm thinking about joining our city's pool so that I can take advantage of that. I am finally a senior this year and notice they thankfully have a much-discounted rate for us seniors. I could not afford to join, otherwise.

    Why are you getting steroid epidural nerve blocks in your jaw and shoulders? The ones I had in my spine only caused me more SEVERE pain! Some doctor is getting rich off of you and/or off your insurance company!

    bj1208 replied to BarbieJean1949's response:
    hi BarbieJean1949 - welcome to the support group -

    first - Orthopedic Spine Specialists and Neurosurgeon Spine Specialists are the best to see for back related issues p

    Second -nerve blocks and epidural injections are different treatments - epidural injections are treatments into the joints to try and relieve any inflammation - nerve blocks are normally where they go in and deaden any nerve endings around the areas of the sciatic nerves - nerve blocks are not guaranteed as with epidural injections - nerve blocks are done properly but depending on how much nerve damage there is the nerves can grow back - I had 2 of these and the only relief I had was from the numbing agent used -

    Third - Spine Specialists may say that they can FIX the disc problem - but there is no guarantee that the surgery will work or reduce/eliminate any pains -

    it sounds as though the first surgery was a success - however you had lots of nerve damage which is a different area - the disc was herniated and pressing on a nerve root - the cages put in were to stabilize your spine while it heals - which this can take up to a year - as for the sciatic nerve issues if the disc has been pressing on the nerve roots for a period of time they can become permanently damaged and cannot heal.

    it appears that you had more than one herniated disc that was corrected - the first thru your back and second one thru your stomach - I'm surprised that you were allowed to take a shower so soon - after my surgery I was told not to take a shower - only sponge bath for week til my incision healed - so when you took a shower and fell you damaged the cage and had to have a 3'd surgery to remove the damaged cage -

    the reason another cage was not put in was probably due to part of the fusion and healing process where another cage would not have stabilized

    the reason they used part of your hip bone is to help your body regrow disc(s) - you can click on my name or picture and ready my story -

    my surgery was Anterior Lumbar Fusion L5-S1 - my surgery was a success - the spine specialist removed my damaged disc put a plate, screws and cage in - they did not use part of my hip bone but they did inject medicine to help my body regrow disc - I have fused 100% - however I had severe nerve damage in my left leg and slight nerve damage in my right leg and the chronic pains in my lower back were more severe than originally thought - my surgeon stated he could FIX the disc but there was a 50/50 chance of reducing my pains - so I am referred as "Failed Back Surgery Syndrome" since all parts of the surgery were not corrected - only the disc was -

    What I would suggest for you is to seek another opinion - from either an Orthopedic Spine Specialist or Neurosurgeon Spine Specialist - get a couple of opinions to see what's going on with your back and possibly what can be done -

    Following doctors orders after surgery is one of the most important process for healing - back surgeries can take up to a year or longer to heal properly - any nerve damage, depending on how long it's been damaged, may repair itself but can take up to a year to do so - and if like mine, can be permanent nerve damage.

    I don't mean to come across being mean but there seems to be parts of your story where you may not have followed doctors orders once you were home - and this can cause more problems and more surgeries.

    Please keep us posted as to what you find out - take care - Joy
    Bicbra replied to BarbieJean1949's response:
    Dear BarbieJean1949

    Have you ever asked you doctors about a neurotransmitter,
    it's like a battery pack that fits under the skin with to probes that are inserted in your spine where your having pain, and it can be regulated to treat your area of pain. That's what I'm getting real soon, I'm getting excited about it because I have ran out of options for pain meds.

    bj1208 replied to Bicbra's response:
    HI Barb - this is actually referred to as a Spine Cord Stimulator Implant (SCS) -

    Normally what they do is a "TRIAL" test first - they insert the leads into your back and you have the transmitter attached to your belt/pants - this is done for about 5-7 days as there may need to be adjustment done to the transmitter or the leads may need to be re-positioned. You are awake during the procedure and cannot take any pain meds up to 6-8 hours before as they want you to be in pain. The back area is prepped and given a local to numb the area to be cut (very small) and the leads are inserted. They put the leads in the areas (2 leads) where they pains are the worst (guided by fluoroscopic x-ray). They need for you to be awake so they can tell if they are in the right areas. It is a painful procedure

    The 'sensation' from this (kinda like a TENS Unit) is you feel like bubbles or tingling going up/down your spine - what this does is sends signals to your brain to 'trick' it into thinking there is no pain - If patients can handle the 'sensations' and it does help reduce the pains then the actual implant procedure is done - the transmitter box is implanted in the fat part of the buttocks and the leads are put into place. There have been a couple of members a few months ago that stated if you do not have a lot of fat areas in the buttocks (meaning if you are pretty skinny and no rear-end) to not have it done as you will be able to feel the transmitter box

    this is not 100% as adjustments to oral meds may need to be done to help with some pains and/or break-thru pains.

    there have been quite a few past members that have had this done and have had great results from it - reducing their pains by 20% to 40%.

    I did have this done on the "trial" basis - I have chronic low back pain and severe nerve damage in my left leg and minor nerve damage in my right leg. The SCS did take away the pains in my legs but it intensified the pains in my lower back (almost tri-fold). Since I was in the 'Trial" part I went in and the leads were pulled out.

    This procedure is very expensive and most insurance companies require that the "trial" be done first -

    Depending on the area where you live depends on the usual and customary charges for the procedure. When I had mine done I was already at 100% out of pocket benefits. The "Trial", if I remember correctly, cost about $20K - BUT the actual procedure can run into the $200K -SO please check with your insurance company to see how much they cover as in if your insurance policy pays 80% your co-pay is 20% and when you do the math it is expensive.

    There are other procedures that can be done - TENS Unit can give the same affects as the SCS implant and is not as drastic - I would research all you can on the SCS implants (google: Spine Cord Stimulator Implants) and you will find lots of information on it. There can be problems with the transmitter battery - so be sure to research and ask a lot of questions.

    A pain pump implant is another way to go too - there is a sac that is implanted (in front area - lower abdomen) and leads are attached going to the back area into a sacral spot very close to the pain areas (2 leads) and a 'cocktail' mixture of pain meds is injected into the sac where this flows to the back - a computer is programmed for the sac and releases the amount of meds directly to the pain area - this helps reduce greatly the amount of pain meds taken orally . I am going to have this done this fall/winter as I am at the highest amount of pain pills per day

    Don't give up - there's lots of treatments that can be done - be sure and discuss this with your surgeon and get a couple of opinions too -

    Keep us posted - take care - Joy
    charl1942 replied to bj1208's response:
    Joy, you certainly know what you are talking about due to your experiences. Everything you said about the neurostimulator and the surgeries are exactly what I have been told by orthopedic surgeons and a neurosurgeons in the past.

    When the medicines are administed through the pain pump it should save the liver and other damages to your body which happens with any medications taken by mouth.

    Thank you for being a constant on this board helping so many people with your vast knowledge.
    paininSD responded:
    Have you tried Noratryptiline? Its for the sciatic nerve. Also, Niacin is for nerve repair. You can buy it at Walmart but make sure you buy Non Flush other wise you get hot flashes. It takes about 3 weeks before you see any changes.
    bj1208 replied to paininSD's response:
    hi paininSD -

    I've read up on both these medications and I do not know if your information is correct -

    Noratryptiline is an anti-depresent - and you indicated it is used for sciatic nerve - I don't see any benefit for this -

    Also, Niacin - Vitamin B3 - again this helps with various sex and stress related hormones - prescribed Niacin is to treat diet changes to help reduce cholesterol and some fatty substances in the blood - again these 2 items do not help "REPAIR" Nerve issues -

    I have permanent nerve damage in both legs (left being the worst) - there are 2 approved medications to help with the nerve pains - those are 1) Neurontin (Gabapentin is generic version) and 2) Lyrica -

    If you have permanent nerve damage nothing can repair the damage nerve roots - they are beyond this point.

    If you have a damaged disc and have sciatic nerve issues with it - normally if you have something done within a good 6 months of the injury SOMETIMES the nerve root CAN REPAIR itself - but if you wait too long to have treatment then permanent nerve damage sets in and cannot be repaired.

    So please, before giving out information check all the sources to make sure this is the appropriate medication and has been approved by a PHYSICIAN and/or PHARMACIST- there are lots of over the counter meds that promise a lot of things and are not approved to do so -

    Anon_960 replied to bj1208's response:
    Dear Barbie Jean,
    It is modicum not modicom.
    when you have the same pains as another you sympathize, if you can only imagine the pain, you empathize.
    The word is regardless, though some use irregardless, it is still considered incorrect.

    You did not come to this group for a grammer lesson, but I thought you would like to know. I enjoy words and always like for friends to let me know when I am incorrect. That is what we are here...friends. Thanks for your input. That is how we all learn.
    yuskan replied to bj1208's response:
    hi i'm new to this site and you sound very knowledgable. i had a spinal fusion in 2006 on S1/L5 the operation has given me some relief especially the foot pain, i am now finding pain on my left side and my right foot is starting to ache although i've started a new job which involves a fair amount of lifting and being on my feet for nine to 10 hours would be an issue, i have since resigned and returned to my lod job which is less hours but more lifting seems i can't win. i've also had a knee operation which still gives me grief and thumb operation so i'm used to withstanding a fair deal of pain. i went to my doctor who seems to think its a disc in my back that is causing the stress. i have at the same time been seeing a chiropractor who has done an xray and adjustments first 3 times a week then down to 2 times and now once a week. as you can imagine itsrather costly wouldn't you think i would be in less pain instead of more i'm not sure as i started the new job if it's coincidence or is it the chiropractor is not helping i haven't had so much pain there for quite some time. i must admit my knee was better while i was going to him. i have a tens machine which does help. my question is am i wasting my money with the chiropractor and should i ask him for my xrays so i can take them to my own doctor i did pay for them after all. am open to suggestions.
    bj1208 replied to yuskan's response:
    hi and welcome to the support group -

    by trial and error is how I have come to know a lot - this is from my own experience and also from the wonderful members here on WEBMD - when I first came here over 5 years ago there were numerous members - some have resigned to spend more time with their families -

    I too had a fusion L5-S1 back in 2008 - I fused 100% but they couldn't do anything for the chronic pains or the nerve damage in both legs -

    I know have 3 more discs that are causing problems and have been told NO to further operations.

    What I would suggest that you do is; PLEASE STOP SEEING THE CHIROPRACTOR until you can get diagnosed by either an Orthopedic Spine Specialist or Neurosurgeon Spine Specialist - the reason we suggest this is that if there is something more wrong with your disc(s) and the chiropractor does not know, they can do more harm than good -

    Once you have been examined the spine specialist will let you know the best treatment options - and if physical therapy and/or chiropractic care is needed then they can write the proper prescription for that -

    Hope this helps - please keep us posted - Joy

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