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Desperate for help!

edited 06/11/2012 - 8:43 AM in Pain Management
:< Hello all online spine family! I am a newbie, but as I put at the bottom, I've been suffering from constant level 8-10 pain for the past 5 months. I had one small break for 3 1/2 weeks after a caudal lumbar epidural, it was the only effective injection treatment out of the three since Jan. I am not too sure how much I can go into so I can encourage Edited THIS WEBSITE IS MY FINAL HOPE...otherwise i don't think i can realistically (no matter what it is i still want to do in life) continue with the pain, the rejection from my support network of only 2 people, my folks who pay for every move i make. (control issues maybe? lol.

I need help, I live in a suburb, a town in Surrey, England. I am an american, mom from the midwest, dad is from greece. my father is strict and had a bulging disc that cleared up back when he was an athlete, whereas, i smoke (now to distract myself from this), can't exercise anymore as it is dangerous, i am so exhausted from no sleep, and i just last night broke my fall from trying to put a sock on in the bathroom with my nose by going head first into the sink. i am desperate for an invasive procedure that could help even if there is risk, as I was afraid of the knife 5 months ago, and now i beg 9 its been 4 consultants now, for anything they think could have a hot at helping. no luck, no realistic advice or direct answers, i leave, they don't prescribe, they refuse to allow me to decide to take the risk as they just won't even try.

I cannot even sit down to use the toilet, i have to stand, and i limit all nutrition in order to not have to go. this week was the first time since maybe the age of six i could not get to the bathroom to pee, and i feel so ashamed. i have an old and very dead history of getting high when i was younger on vicodin. i wanted to fit in so bad, anyway, went to a legit rehab, worked my ass off, and it was easy to keep clean. now i have legitimate pain that makes me want to plan and end to it all-and i get no offers to prescribe ANY opiates beyond the lowest baby dose possible. I've never had these meds before, but they are sugar pills to me, as they don't even TOUCH the pain. no doctor offers to help operate, nor treat the pain with opiates aggressively ( i am a heavy girl as well), other than telling me to lose weight fast even though i've been struggling with obesity since very young,and i'm sure i'll always have to plan strict meals to lose and maintain.

writing too much i can feel it.

need a doctor who is reputable, you know and trust, isn't afraid to explore how to find a solution, or even the tiny sliver of improvement. also/OR a pain doctor who as i mentioned above will still put me in physical addiction of opiates until i am able to build strength and go back to physio and exercise until i get better or hear from a surgeon ready to go.

new to england, but i am crying as i finish this up, i am so afraid i will neverhear from anyone with any advice other than please don't hurt yourself. i'm not going to, not with a safe place for me to request/beg for advice from those who know or care?

thank you for your patience in reading this mess, i am sorry, so little sleep, and i am hoping i hear from someone anyone or everyone asap:) lol. thanks, take care!

Giving or requesting medical advice is prohibited on Spine Health. Post edited by Authority Member haglandc


  • Sorry you're having so much pain. Keep looking for a Dr. to help you. You can look online near your city or keep getting your Primary Dr. to refer you. I've tried Physio and acupuncture to help the pain. Have you been to Physiotherapy yet?

    I just started pool aqua therapy to help exercise and feels better in the water. Heating pad or ice can help also. I drink lots of water to rehydrate the discs about 8-10 glasses a day. I use a recumbent bicycle and try to walk with a cane most days. I hope time will heal your disc or you find a Dr. to help. Never give up. 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
  • well bless your heart, you sound like you are at your breaking point but I'll be thinking good thoughts for you - being far away from home doesn't
    help - I wish you could find someone to talk to, your emotional state needs care also, I hope you feel better honey & as Charry said, search & ask around for the name of a Dr. - you just must. Good luck to you, Susan ( don't hold this despair inside,
    I hope you can think of someone to talk to)
  • Hi there...I'm glad you are here. Trust me when I say you are not alone....while you may not see my face or the faces of others, we were here for you.

    Most of us have been on this roller coaster of pain and can offer advice.

    I completely understand why you miss the states. The quality of medical care here is something most other countries cannot compare to in my opinion. It's not perfect but the options are here. IS there a reason you cannot get back to the states?

    Assuming there is, I believe there are things that can help you. I know you cannot take narcotic drugs as it seems you have worked very hard to be clean and that is a HUGE accomplishment. If you can do that, you can beat this. Of course you need to discuss with your doctor but there are things like acupuncture and herbal supplements that can help you.

    It seems you have a herniated lumbar disc. Is your pain in your leg? Back? Both? Have you lost feeling in your leg? I know you cannot take opiates which honestly, I prefer not to either. However, if it is nerve pain, can they give you Lyrica or Neurontin? I do not believe they are opiate drugs.

    Another one to ask about is Celebrex.

    Do not give up hope. Trust me on that...I have been where you are with the bathroom thing and had to be catheterized...something I refused until I couldn't refuse anylonger...and at the end of the day, it was more the anxiety than the catheter. I have to tell you that once I got past the pride and control issue, I realized in the grand scheme of things it was not as traumatic as initially thought.

    A few other things...can you meet a psychologist or psychiatrist? This is not an easy time and even with family/friend support, back pain is very isolating. There is nothing to be ashamed of by seeing help for your depression. You have a lot on your plate. You just need to build a support group until you can be scheduled for surgery...the support is here, with doctors, for your mental well being, for your physical well being, and for your long term recovery from this back issue.

    Please...stay around b/c I know we have folks on here from the UK that can probably send you advice via Private message.
  • & I hope you'll check in tomorrow & say how you are because I care & I know everyone who reads your post will care too - you're not alone - that is for sure.

    I hope you can rest - Susie
  • Most of the people who are being treated with stronger meds and more aggressive therapies have been suffering for a long time. I know that's hard to hear, but when you come on a board like this and think "why are they getting all of the good meds and I can't even get anything," that's often why. You are hardly into the chronic pain state yet.

    I am 2 1/2 years into my injury now, which will only get worse, never better, and I can say you do learn to deal with it. You learn to manage it with your mind more. My doctor asks where the pain is and I have to really think about it.

    Also, and I know this is also very hard to hear- but really think if you're telling your doctor your pain level is 8-10. Usually 10 is considered a level which would render one near unconscious. 8 would leave one fairly well unable to focus on anything else at all. If you're walking and talking, they usually consider that a 7 max I think. Maybe look up some pain scales. Some here do spend time at the 8-9 level, but they are usually not up and around at all when they are in that state.

    Remember, we all have pain and are just trying to help.

    Your history probably makes you not a candidate for some of the opiates because they are rather habit forming, so my suggestion is to get the weight off ASAP in whatever way you can (it will probably make a big difference) and get to physical therapy.

  • i've just been discharged from a stay at a psychiatric hospital here because i wanted to get mental help, or at least any support i could while i deal with this. i had to leave because i couldn't make it through my group therapy, i couldn't function even with nurses, and therapists 24 hours a day. i ended up angry at myself for not being able to work the program there even though i tried every hour. no real sleep, ate standing up until the sciatica in the left leg was too much to handle. so meals were about five minutes of the healthiest stuff i could get my hands on, and then i had to hobble back to the bedroom floor for a break. my last night in there i was trying to dress myself and can't lean against the wall or the back kills, and i knew socks were the hardest, but i had to try, and i fell head first into the sink and broke my fall with my nose. it was loud and the pain was nothing compared to the back and l leg, so i just went barefoot as usual. i can't wait to go back when i'm well enough to at least sit down, or can cope with groups on the floor for long enough to finish the one hour or one and a half hour sessions. i've tried up until now celebrex, pregabalin, tegretol, phenergan, paracetemol, ibprofen, diflonac sodium, tramadol, diazepam, lorazepam, paroxetine, tamazepam, oxycontin, oxynorm, oromorph, i won't go near vicodin ever no matter what, i don't care if they said its the only way. there are more i've tried but can't remember off the top of my head. i went to the gym, and had to stop with the machines because i couldn't handle it. i swam once because the pool was only a minute drive from the hospital and i would kneel on the seat and use all of my upper body strength to grab on to the headrest and push all my weight forward so i could keep from screaming. swimming is amazing, and i can't wait to do it as much as possible but right now i'm in my parents home, and the nearest pool is five minutes by car, and it's just too much, i say i'm fine, keep trying keep pushing, hobble/walk all day to keep my muscles from stiffness which just makes things worse. Thanks for the advice about pain levels, i guess its a 7 then since i am conscious and can type and answer questions etc. oh yeah,neurontin i've done also. the only relief was when i had oromorph, oxynorm and lorazepam all together, and even then it lasted about half an hour, and then it was just a joke, but i took any relief i could get so i could try to sleep and recharge my batteries, which is such a joke at this point. i'm exhausted, and i'm eternally grateful for every reply! thank you so much, and i'm not going out without a fight, i promise i'll do whatever i can i have to....
  • Hi there...glad you stopped in to give us some more information. Pain is really personal. If you believe it is an 8-10, it probably is. Don't underestimate pain b/c we all measure it differently.

    I tend to understate my pain which is also a problem b/c I wait too long to get help.

    I'm glad to hear swimming is enjoyable to you. That's a real positive!

    Did the psychiatric place offer any advice on how they could help you? Or how they can help you on out-patient care? Do they have a remote service that you could use over the phone?

    When is your next medical doctor appointment? Did they say how much weight you'd have to lose in order for them to operate? I am not familiar with that but my guess is that they want to give you the best chance at an easier recovery.

    What surgery are you looking at having?

    Anyhow, stick around. You are right about being able to get rest...it's the key to re-energizing which makes it easier to deal with things. So, don't feel bad about sleeping more than what most consider normal. I found that I was feeling guilty for sleeping too much or just not doing as much around the house as I thought I should but I've put life in perspective...I realize God doesn't care if my house is a little dirty or if my garden has weeds in it. He cares that I take care of me...so that's what my job has been the last 6 months...working on me getting to a new version of "normal".

    I know it seems like life is closing around you but trust me...all you need is for the window to be cracked open and an abundance of sunshine will remind you that it only takes a small opening to let in a lot of positive light and happiness.
  • Just for me, since my pain is due to a bad accident, I have a different view on things. I guess one does when they spend 2 hours with 6 broken bones and no pain meds strapped to a back board (oh, and no water since you might need surgery). So that set my 9/10 range.

    I don't know what to tell you, quite honestly. I've been there. I have kids, and I just kind of plugged along. Things are not that bad for me at the moment, but they have been. Without good medical care that you trust is doing everything they can to help you it's living hell.

    As for pain levels, it is personal. I kind of agree with those who think that doctors kind of think people who are still ambulatory and using 10 might be exaggerating, but this is just my opinion. In MY PERSONAL pain scale, a pain with activity limitation like you describe would be a 7-8. 9 is needing my husband to sit me up and get me out of bed to the bathroom (been there too). 10 is in transition in labor yelling my head off ;)

    I would say this. Don't imagine in a million years that taking your life won't devastate those that love you, or that they'll get over it. Just keep trying to find something that helps. I know the system is different there, so I can't help you navigate it. Maybe someone can. You can live with it. You have, all these days. It's neuropathic pain, it's not a sign that anything is burning a hole in your back, no matter how hard your brain is trying to convince you otherwise. That means you can survive it as long as you can tolerate it. It won't kill you, even though your brain is trained to think pain is supposed to.

    And doctors don't really tell us that, do they? That this neuropathic pain isn't really a sign that something needs to be fixed in the sense that there is an injury causing damage to our tissues.

    Make it your challenge in life.

    FYI, vicodin is unfortunately one of the least habit forming of the opiates out there. It's just the easiest to get (for that reason). I'm not sure where that leaves you, not being a pain management doctor (or how they do that over there either). Have you tried Tramadol?
  • Hi hon...I want you to know that your post has broke my heart...do you miss the States enough to try and come back? The reason I ask is that the more I read about the medical care where you are at the more concerned I get. I know the trip would be horendous as far as pain is concerned...but, it would be worth it if you could find relief here stateside. Do you have pain management dr's there? Sounds to me like someone is dropping the ball in your situation...please, do not take your life..my father did and both my grandfathers did and I haven't gotten over it yet...you will be in my prayers~
    :) Dusty
  • I am sorry to hear that you are having such a really bad time of things especially when you are far from home!!!

    How long have you been in the UK for??

    OK I am presumming that you have been to register and see your GP?? (PCP) and he / she has referred you to several surgeons??

    I am also presuming that you have had CT & MRI scans to confirm that you have the problems you have listed??

    Its one of those things that over here we have to wait a number of months before we can even get to see a surgeon and to see 4 in a short time scale is something of an acheivement in itself !!!!

    If you have had a caudal ESI you must be dealing with a local pain clinic - attached to your nearest hospital ?? have you got a contact for someone there that you could speak to?? this is usually hard to do as they are covering a large area and a high number of paitients but I would suggest that you try calling their secretary and see if she can get a message to someone and see if this works??

    On a daily basis the main person that can assist you with you pain levels is your GP (PCP) as they are the one that would be prescribing the medications - have you disclosed you previous addiciton to them??

    The only other way to get to see a surgeon or pain clinic is to go privately to see them and then see if they would be willing to accept you as and NHS (Nation Health Service) patient at their hospital.
    there are potential issues with this though, I have hear din the press reccently of a case where someone was refused treatment as they went "private" and then went into the NHS again. Personally I have done a similar thing recently and not had any such problems.

    I am glad the that ESI worked for you as this could be the next course of action for the pain clinic again - get your GP to send then an email or letter stating that you are having problems again and see if they can short cut the system slightly!!!?! Normally over here you might get up to 4 lots of Steriod based treatment in a year - this is the max that they seemed to be allowed.

    What type of treatment / operations were the surgeons recommending for your problems and why do they now seem reluctant to do these?? I know weight and smoking are the two big things over here I had to loose 1 stone and cut the smoking out / reduce it considerably before they would do my second operation - not easy to do at all but I did what they asked!!!

    Be warned that if you go in to see a surgeon full steam demanding an operation you are not going to get it!!! It is always considered the last resort and they are very hot over here on Munchausen's Syndrome.

    For my the two main things you need to do is get the pain under control - call your GP NOW!!! and also speak to him / her about accessing the Community Pshciatric (SP soz!)Team.

    Most health centres should have a CPN based with them or a local hospital where they have an out reach team they might be beter for you right now than a residential facility - they would have to bring someone in from a general hospital to try & work on your pain but this might be overlooked and they might be trying to concerntrate on the other issuses first.

    The CPN's can work with you at home or at the health centre if this is better for you !??!

    I hope this points you in the right direction for now - you have to get the pain under control!!! first and everything else with then follow!

    Your GP is the one that will write refferal letters for you (surgeons / pain clininc etc etc) so they have to be fully in the loop to get you onto the next step of the ladder so to speak.

    I have answered your request to be added to your buddy list so PM me anytime - but I tend to be online during the day and not in the evenings
  • Very nice post, Dorset boy :)
  • DorsetBoy...awesome!
  • dilaurodilauro ConnecticutPosts: 9,849
    but please keep in mind, that Spine-Health is not going to provide any magical actions as to provide your final hope.

    Final hope rests between your doctors and yourself.

    Members here can offer advise, make suggestions, let you know that they are sorry to hear about your situation, but at the end of the day, its you who needs to build up the courage to deal with everything that has been placed in front of you.

    So many other members on this site, some in many ways in much more serious situations have found ways to keep their head above water.

    I wish there was one easy way to tell everyone how to do that, but if it was that easy, no one would be faced with difficult situations.

    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Isn't that the truth? For some of us, there is no "cure." We get by day by day, week by week, and keep our heads above water by choosing happiness over despair.

    I mean, for you it's been 5 1/2 months, and you're still looking for the end. For me it's been 2 1/2 years and there is no end.

    That's not meant to be a comparison, but if it couldn't be done, I wouldn't be here.
  • I'm going for pool therapy by the Physiotherapist. I have my 2nd lesson today and going only once a week. They put a float belt on you first to see what you can do in the water. It's a heated pool so the muscles feel good no shock to the body going in and then I go in the hot tub afterwards. Not sure if Physiotherapy is an option right now for you. I found this pool online. Maybe there's something close to where you live. I've been disabled and lost my job for 2 years and 3 months. Never give up and did you check pain management clinics online?

    I have an addictive personality and I take slow release medications narcotic and could be an option for you as there is no feelings with it as it's slowly released through the day. Try and walk a few minutes a day with a cane or walker. I wish you the best. Hold on and looks like you're a strong woman. 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
  • thank you all again and again. the replies no matter what the content are just proof that there are people out there who care or connect or both.

    i have an appoiontment with a private pain management consultant, next tuesday the 18th? it's in a town 15 minutes appx away, but i am going to hang in there and if i have to scream during the car ride, so be it, so long as i can make it to some help.

    my mother is my only caretaker and we drive each other mad, but i don't have the strength even keep up. i just try to stay out of her way, as the truth of how she feels about me or having to care for me, etc is almost as painful as the back/l leg pain.

    so, i am going to fight everyday until i make it to that doctor. my hopes are not high, i've dealt with pain management doctors before-so i'm going to write down whatever is helpful for him in a journal so i can get there and not waste time going through the basics.

  • The thing isn't that you should give up hope. The thing is that research shows that people with severe back pain generally can expect max 50% pain relief. So that's pretty much what he's going to be shooting for.

    Between that and your history, you are a very difficult case for him. So you need to give him a chance to do his job.

    Now I've had my own lovely experience with pain management doctors. The first one I saw ran his finger down my spine and said "I don't notice anything." (see my profile pic- if he imagines he can find spine issues with his finger, he's pretty far off because he missed a biggy). He told me I'd have to stop riding my horse, lose weight, and go to physical therapy. No mention of anything he might do to help. Never saw him again.

    But it's a 2 way street. I am with one now that I like, but I have to hold up my end of the bargain as well.
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