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I AM DESPERATE!!!!!!! Can Someone Please Help

TomRodnick555TTomRodnick555 Posts: 2
edited 04/14/2015 - 10:22 PM in Chronic Pain

My name is Tom and I am brand new to this forum. I have tried to read the rules to the best of my ability and if I break one I assure you it is unintentional and I mean no disrespect. I am just very overwhelmed, upset, anxious, and I dont know where to turn or what to do anymore. I need people who are more experienced than i am to help me/point me in the correct direction.

I am a 32 year old male. By trade I am an electrician. 3 years ago I was diagnosed with degenerative disc disease. I went through the whole rigamarole of doctor after doctor after specialist after surgeon etc. You catch my drift. Anyway long story short my condition was deemed irreparable by surgical means. As an alternative, and some self advocating, I was implanted with a neuro-stimulator. I got some decent relief, however, the trial surgery was much more effective than the permanent surgery, and I felt a bit duped. Regardless, I was able to stop taking the heavy-duty medication and just stay on tramadol, about (1) 50mg to (2) 50mg and some meloxicam. Not a bad improvement. As time went on, there were some times where the pain got bad again but only for a few weeks, during which time i went on a moderate dose of a narcotic, rested, stretches etc. And once again was able to return to "normal". As you might guess, there is a certain amount of pain that I always will have to live with it seems.

Anyway, I am a resident of Mass, like I said an electrician, and this winter was absolutely brutal!!!! I had to get my truck out of the driveway to get to the doctor, so I was forced to shovel, a task I ordinarily would hire someone else to do....but sometimes life doesn't always work out the way we hope. While shoveling, I suddenly felt that familiar "snap" and I knew immediately I was in trouble. I took moderate measures at first, a torodol injection at the walk in, a few days off work, ice/heat etc. It just got worse and worse and worse. The spinal stimulator started turning on and off at will almost and was giving me zero relief. It is worth mentioning that I also have Bi-polar disorder. I went to my PCP and was placed back on a moderate narcotic. Within four days, I noticed a shift in my mood (sometimes the heavier meds can do this to me) and I knew I was in trouble. I went to the ER and admitted myself into a psychiatric ward and there they got my head meds back on track and my pain under-control with long acting narcotics, nerve medicine (GABA), and short acting narcotics PRN.

I've been out of the hospital a month and my CT scans have been processed and they found that I have 2 bulged discs that weren't there before or at least as bad. Once again, surgery not an option. I've been told in very specific terms that my condition is incurable and surgery is not an option. My spine will continue to get worse over time. I don't want to be overly dramatic about this, but my point is there is no simple fix.

My spinal stimulator will be troubleshot next week, and PT begins on Friday. However, my doctor needs me to find a pain management center to find something that, long term, will be more effective for pain. I know that the course of meds I'm on now is unsustainable and is not a permanent solution to my issue. But I dont know what to do. I take the medicine and go to work because without work I cannot afford to live and have health care, I absolutely refuse to go on SSDI @ 32.....it breaks my heart thinking about it. I come home in agony, take the meds, go to bed and the cycle continues. Dont get me wrong, the pain is there with or without work, but its a lot worse after and 8hr day at work.

I have NO ACCEPTABLE quality of life for an otherwise healthy 32 year old. I want to run, ride bikes, be intimate with my girlfriend, go to the gym......but work is all I can do and I'm in tears half the day, luckily my boss understands, and i have "light duty".

I DONT WANT TO DO THIS ANYMORE. I'm so distraught. I'm sick of not having a solution. I even went to a pot doctor and tried all kinds of supplements. I hate my life. Plus, I hate going to the "specialists" and being scrutinized as a possible drug addict. My gf is a nurse. I have no access to my meds, I have never diverted/sold/or otherwise abused a medicine, I have never ran out early, I have never lost a script, i have never had a script stolen, i have one prescriber, i typically only use 1 pharmacy (convenience and supply is sometimes an issue), and I have never use a medicine in a manner inconsistent with its labeling. As mentioned above, I need to find a PM doc. Ive been turned down by the one the hospital referred me to upon my discharge and I'm afraid to apply and get referrals to more because I'm afraid i might be looked at as a dr shopper.

I'm scared, I'm frustrated, I'm over-whelmed, and I'm just tired of this life. I want to give up because Im so damned tired of living this way. I see a therapist, I see a psych doc, I do what I'm told and still nothing. Does anyone know of compassionate pain management clinics/doc's in MA? By compassionate, I mean not biased, not yet jaded by drug seekers, someone who will work with me to find a way to fix this mess and not be a jerk?

Also, has anyone had to leave a profession due to chronic pain? Being an electrician is all I know. I cant do all this and go back to school? I have a family and can't afford it....I need to provide.

I know this post is all over the place, I'm just very distraught and upset right now. I don't want my family and friends to know I'm losing faith.

Please Help Me.





  • LizLiz Posts: 7,832
    Please take the time to read this post and refer to it when you have questions

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    Doug Hell

    Also working with us very closely is Allison Walsh from the Spine-Health company


    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • HI, and welcome to the boards. Reading your message, I can feel your frustration. It is difficult at any age but being so young makes it a lot harder!

    What is the reason that they won't do surgery? DDD is usually a reason for fusion surgery, which is what I had done, and the reason I had it. I had to go to 3 surgeons before I found one who would do it. The first drs wouldn't operate until there was instability in the spine. That made no sense to me, because it still hurt like he'll because I had no disc left!

    And now you have 2 bulging discs. Again, what is the reason for no surgery? I told my drs that I HAD to work and take care of elderly parents...I couldn't be messing around with this!

    As for meds, the Butrans patch has been my life saver (yes, even after surgery, there is and always will be some pain). My sister uses Fentanyl patches. They release tiny amounts of medicine throughout the day, so you aren't up and down constantly.

    I personally can't help you find a Dr there, as I am in Pa. , but look up drs in your area, and pick out 1 or 2, and tell them that you are inoperable and need to get into pain management. Why did the one Dr. drop you? That is usually not a good sign but it isn't always the end of the world. Can your psychiatrist recommend someone, and maybe write a note on your behalf?

    I know how hard this is, but there is light at the end of the tunnel. It sounds like you at least have a supportive gf. That is huge! And we are here to help you also. Try not to get discouraged!
  • Hang in there buddy. I'm also your age and know what it means being restricted from doing stuff that one should do at this age. Try taking things slowly one step at a time. Try not to panic and maintain a positive attitude. Things should slowly start to sort out buddy. Take care
  • Doug HellDoug Hell Posts: 335
    edited 04/15/2015 - 3:26 AM
    Hi Tom,

    First things first, welcome to Spine-Health. I'm sure you will find many answers to your questions on this forum. There are people here just like you, feeling exactly the same way as you do. I too have held hands with lonely; it has often been my friend.

    I'm not sure why your condition has been deemed to not be surgery worthy? Did they offer you an explanation as to why? It is not uncommon for people with DDD to have a fusion surgery and/or multiple fusion surgeries. Please enlighten us as with more information, we can better assist you. Unfortunately, yes, it is indeed incurable, but it is also manageable. This is definitely a roller coaster ride before and after corrective measures have been taken, so I am not surprised that you have ups and downs. Chronic pain sufferers will never be pain free. You have to manage what remains. Narcotics are not always the answer, but some people need specific doses for life. That being said, it will NEVER take away ALL your pain. There are other means of pain management that I would encourage you to pursue such as heat, ice, tens machine, PT, etc... Have you explored anything outside of pain meds?

    Due to the nature of your condition (DDD), Construction is not going to work out for you in the long term, my Friend. Clearly you have new issues based on your Occupation. Unfortunately, the more you aggravate this condition, the worse it is going to become for you. There is only one direction for you if you continue to go this route and that's the downward spiral. There is no room for pride or stubbornness when your health hangs in the balance. Without your health, you have nothing. Finances are a distant second. It doesn't surprise me that you are hurting more and more, especially after 8 hrs of Construction type work. I feel for you as I am in a very similar situation. 15 months ago I was in a car accident that yanked my life right out from under me. I had a 4 level posterior instrumented fusion (compression + radiculopathy). I'm lucky to be able to walk and better believe I am thankful, despite the fact that I am still suffering. Even 15 months later I have a very weak left arm + hand combined with chronic pain. I am still not where I need to be and have not returned to the work force. I too am young with a young family. To make a long story short, we had to sell our house along with some other items including our newer model SUV. My only option is to re-educate and at some point I will. As a result of this move, we can manage financially. Though we are not happy about it, we can certainly get by and the Insurance company's strangle hold isn't as tight now.

    I'm sorry to hear about your Psychiatric condition. Narcotics absolutely cause mood changes, especially if you are Bipolar. My advice would be to focus less on the drugs and more on the other means of pain management. I know it is easier said than done, but you need to somehow figure out a balance here.

    Unfortunately with the abuse that is running rampant with narcotics today and the laws that Doctors are faced with, someone with your condition walking into a Pain Clinic is a liability. Everyone is scared. That being said, keep trying. Eventually you will find a Doctor that is willing to help you. I went through the same hassle until I found someone. That was 12 months ago and he has helped me to manage all of this. You need to put the negativity surrounding narcotic pain meds behind you. Of course they are going to look at you the way they want to, but you need to ignore all that and just find a PM Doctor to get this pain level regulated! Whether they think u r Doctor shopping or not is irrelevant.... You NEED a Doctor. Those are the facts. And that should be your ONLY answer.

    The things you mention you want to enjoy can be attainable if you can just get this all under control and explore some other options with some other opinions (make sure you get a 2nd opinion as I don't understand why you can't have surgery). Killing yourself as an Electrician is not the answer, even if it is "light duty." Clearly it is too much. You need to WANT to make the necessary life changes and accept it for what it is. Otherwise, you will fight the good fight and ultimately lose any way. You may make your condition worse along the way as well.

    There is never a simple fix. The focus should be to manage. Any one person can take on the BS of just one day, today. It's when we try to take on the hardships of yesterday and the uncertainty of what tomorrow may bring that things become unmanageable. That leaves today. The moment is what counts. Deal with it as it comes, one step at a time. Again, I know, easier said than done, but if we have hope, there is faith and when your mind is in the right place, things are a lot easier to manage and pain is absolutely affected by the mental aspect. The reason to consider life and what's of value is to make sure you're not missing out. Seize the day. What's important to you? What do you care about ? What matters? Pursue that; forget the rest.

    Sending healing vibes your way.

    Doug Hell
    Spine-Health Moderator
    Realize that FEAR is our worst enemy. Get up & get out in that stormy weather of the real world & kick fear in the teeth. Stare at it dead in the eyes & walk right through it into the storm; because once you're wet, you won’t fear the rain anymore
  • I am right there with you. I was diagnosed with DDD 5 years ago after an injury with a obese patient. NOw the pain is extremely bad, to the point I am on 2 major pain meds and just got 6 trigger point injections and they didn't work. I am waiting on a referral to a pain specialist to do an epidural injection in my cervical spine. The doctor that did the trigger point injections said basically I have bone scrubbing bone. My appointment with the surgeon is not until May 21st. I have already waited one month and have one more to go! I am in extreme pain most of the time and still have to work. I work in a clinic so it's not hard work and not very physical but I do an extremely lot of walking and it just kills my back. I stay in spasms and it gets so unbearable. I just can't take this pain!!!
    Loving Mom of one and wife of 13 years
    DDD x5 yrs
  • janiskijjaniski Posts: 679
    edited 04/15/2015 - 4:20 PM
    Hi Tom,

    Welcome to Spine Health. It was great you could get things off your chest. This is a great group. Like everyone I can empathize with you. I have spent the last 12 years having a surgery a year. I am fused L1-S1 and my SI joints are both fused. It took a long time to resolve most of the pain altho it is not totally gone. My whole life has been in the ski industry (starting at age 16). I teach skiing and have been a supervisor for most of that time. I was knocked unconscious by a snowboarder about 16 years ago and it totally changed my life. Besides ruining my back (causing my spine to collapse in on itself) and putting my SI joint in a different time zone I had a concussion, bruised kidney and torn cartilage in both knees. It was hit and run but I was working at the time so workers comp covered things for awhile til they went bankrupt and then it was all on my nickel.

    I took a leave of absence from teaching but when I returned I worked in a lot of pain til all the surgeries were done. Can you get a 2nd opinion on your condition? Sounds like you are a good candidate for surgery. Just when I thought I was done with surgeries my spine surgeon discovered that my right hip needed to be replaced (from running my whole life, not connected to my back problems). No problem, hip replacement is a common surgery and I wasn't at all worried. However because of all the fusion in my back and SI joints there is no place for movement to go. So my new hip dislocated 2x in a month and I had to have a revision. The revision hip is wider and longer than my old hip (never make a woman's hip wider!!!).This basically wrecked my life again and I am still adjusting to it (its been a year).

    I was able to return to teaching skiing, but only because I am so stubborn. I can't run or bike but I can swim. I was diagnosed with PTSD after the accident happened and started on anti-depressants. Very good move on my part to see a therapist and I had a good one. I moved but one of my doctors kept me on the anti-depressants. Things degenerated and I got more and more depressed. I procrastinated and finally saw a psychiatrist. He changed my meds and slowly I am feeling better. I felt at first, as I was procrastinating, that I couldn't afford it. Now I realize I can't afford not to do this.

    If your resources are limited there is help with mental health issues, usually thru the county or other gov't office. Depression is nothing to be ashamed of. I have done a lot of research on it and it is a disease of the brain. We just also have diseases of our backs which add to the problem.

    Please let us know how things are going and if you have been able to get a second opinion or see someone to talk about things. Good luck. You are not alone. Unfortunately we do not get to live the life we used to have. I keep trying to remember that but it gets hard sometimes.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Hi All,

    Thank you all for your overwhelming support and encouragement as well as for sharing your experience, strength, and hope with me, it means the world.

    To clarify a few things:

    1. I was never "dropped" by a doctor. The pain clinic affiliated with the hospital I was in, refused to see me because the amount and types of meds I was on made them uncomfortable. It was the PMC that the hospital that I was inpatient in, the hospital that placed me on the medicine, referred me to!!!! I didn't ask to be on these meds, but for now, without a fix all they can do for comfort is to "throw" some meds at it for now. To be clear, I am not a fan of this medication, I don't like it, and I want off, however, my other option for now is to suffer even more. Those are my immediate choices.

    2. I have and do do other types and methods of PM. I've done trigger point and epidural injections both useless. Im going back to PT on Friday. That typically has not helped in the past, but maybe now it will. I've also had a neurostimulator implanted in my back. It has since broken after my new injury in february. $180,000.00 implant and it breaks in 1 years time, unbelievable. I also use heat and ice and do my stretches regularly. So yes, I have and am still trying many non med related forms of PM.

    3.. I've been told like horselady that until my spine becomes so unstable that my ability to walk becomes jeopardized, that I am not a surgical candidate. My DDD is still in the "moderate" stages and not yet "severe" so surgery is out according to the 3 Neurosurgeons I saw at one hospital (a big one too). I am having hard times getting second opinions because most hospitals I've tried around here want you to have a PCP at the hospital to get in the door. I don't know what kind of crazy practice that is, but it is the one I am facing now. I'm thinking of maybe just going through an ER and getting and internal referral that way. The volume out here is so high for this type of thing that doctors appointments are 4 to 5 months out. I dont have that time. If I go through the ER to talk to a clinician about the type of negative influence this is having on my mental health, maybe they can fast track a few referrals. I dont know why I've been hitting all these brick walls in trying to get some pretty basic appointments, but I have. I NEED TO GET THIS FIXED NOT MASKED WITH DRUGS!!!! It should not be this hard to get help.
    The other two reasons I've been denied for surgery are my age and the fact that i am nicotine dependent. I am not a smoker any more but still use nicotine, the doc said, even if he would consider the surgery and he wont, I must be nicotine free for at least one year or they wont do it. The age thing is based on the fact that fusion parts are FDA approved for 15 years max...that means that by the time I'm 47 I'll have had 4 fusions.

    If I cannot get some appointments nailed down by Friday, I'll go through the ER and see what happens. Please keep your fingers crossed for me, I just want to be well.

    I am open to any and all suggestions that any of you may have.

    Thank You All Again. I felt so alone and you all have been a God send.

  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    Hi Tom,
    I now also live in PA but I lived in Rhode Island, Massachusetts, and Maine before moving here almost 6 years ago. You know? I have a friend still in New England too and both she and I had not the best pain treatment there. I never thought about it until now. I had a rather big spinal surgery in a hospital in Maine and they sent me home the same day- now home was 2 hours away from a city or medical care! (Maybe we're supposed to be tougher than the average American?)

    Anyway, last July I started with a pain clinic in PA and they were amazed that I was not being treated for pain. They saw old MRIs and surgery reports as well as the current images of my back from surgeries and just recently, of my knee from those surgeries and didn't know why I didn't complain more. Me? I never found complaining helped much but the strongest drug I'd take was tramadol. Now I'm on different meds and I'm finding some pleasure in life.

    Also, lemme address one other thing you mentioned, I went on disability when I was 23 (after graduating from a university) and now I'm 48. You're right. It's not fun but you're not alone in that either. And like you I'm waiting to see if I should have surgery now or wait a bit. My spine is wonky but my left leg is pretty bad too. My brain has obsessive compulsive disorder but I like it aside from that.

    I went through a bad depression for a few weeks realizing that people do die from what I have. I had a good long cry and then I decided that I'm going to keep pushing the limits. We're all going to die sometime but I still have a lot to do. You keep hanging in there and I will too. Oh and, can you install a few extra outlets in my kitchen?

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • horselady21hhorselady21 Posts: 175
    edited 04/15/2015 - 11:05 PM
    HI, Tom

    Just read your post giving details...specifically about why they won't do surgery. When I was turned down the third time because there was no instability ( and because I also use tobacco), the last Dr I saw knew a local Dr who he knew would do it. I saw him and it turns out that he developed a fusion hardware set up and was happy to do the surgery. I don't know if you can travel or what your insurance situation is, but if you want his name, let me know. Depending on where you are in New York, I am in Pa. And may not be too far.

    Also, as it turns out, this Dr. has done the same surgery on several friends and relatives, and all are doing well.

    Forum rules prohibit recommendations of medical professionals and facilities
  • Sounds like there are some people who have been in the same dead end as you are now. And maybe a little traveling would help to solve some of the many issues you face. Our medical system is so screwed up sometimes. I wish you good luck in pursuing some new avenues. Please keep us posted. We are all rooting for you.

    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • BpainFree39BBpainFree39 Posts: 127
    edited 04/21/2015 - 12:16 PM
    Tom, I am sorry for your frustration. I had to go out of state to get my surgery. The fools at the orthopedic clinic I went to first were prescribing Tylenol, and PT for a bad tear, compressed nerve root, and 2 bulging discs. Granted my first surgery did not work, and I had #2 a year later, but some times it's necessary to travel to get these things done. This is what I would do... 1), get all your records, and scan them to a CD, and include the MRI, and report. 2)Then find 3 doctors by doing reviews / searches. 3) Then send the packets to the 3 doctors with an excellent track record. Get each of their opinions, and decide from there. These days, surgeons will review a patient from out of state's case without seeing them in some cases, and it can make things much better. Anyways, good luck, and take care.
    Left foramina stenosis of L3/L4 (retrolisthesis)
    L2-ilaic revision fusion ( loose screws) with a laminectomy at L3 (cage at L3-L4)
    (PLIF) -@ L4/ L/5 - S1 (cage at L4/L5)
  • muncchiesmmuncchies Posts: 1
    edited 04/26/2015 - 7:21 AM
    I am new to this forum.....approximately 30 minutes ago I joined. I too am in severe pain and wish to use other methods other than narcotics to manage pain. But, aside from me, after reading your post.. leaving current employment, especially when your training limits you, is an issue. Since you are trained to be an electrician, it appears your skills and knowledge would allow you to move into another line of work that would be less taxing on the body. Because you are so young, you still have the opportunity to move into another career. I'm not saying it would be an easy road, but taking the time and doing some research on other employment opportunities would be well worth it in the long run. It might take some additional training or a certicate but something like computer repair would be less physical. I hope I'm not violating any rules or offending you by making this suggestion, but I've gone through some of the things you're experiencing. I also realize that it's very difficult to think about alternatives or the fact that life can be good when you're in excruciating pain. I really hope that you find a good doctor and some relief soon. You are really dealing with a lot and it must be very difficult.
  • Redy8RRedy8 Posts: 4
    edited 05/03/2015 - 8:05 AM
    Hi tom,
    I am relatively new here too. The last 3 years gave changed my life with surgery and chronic pain, but u will get through it. My pain has got better but u have to find what works for you and to try and modify how you live unfortunately. It's hard to accept but u can do it and live a great life. I am 42 with 3 kids 2 under 5 and really didn't think it was the end of my world as I can't do all the things I loved like hockey and playing with the he kids etc but I have just modified what I do an how I do it. My family and work have adapted too and at last I have a life again.
    I still have pain and have bad days but thinking positively helps.

    I really hope things get better, I'm sure reading and communicating with all the people on this forum will help you xx
    Thoracic disc graft t9 t 10 dec 2013
    Spinal decompression t9 t10 sept 2014
  • I can understand you wanting to be able to run again but you have to be realistic ....when you have a back condition you have to adapt your life to manage your condition .I use to be a keen runner but I had to accept that I wasn't able to participate in any sports anymore.You have to accept that there's some things you just can't do with back pain and your job seems to be aggravating your back....I have had to give up my career in the healthcare sector because I can no longer cope with manual handling .All my training has been in healthcare and it's upsetting but no point me irritating my back condition ...
    My plan for the future is to work with outpatients (no manual handling involved) I'm no where near well enough to return yet but it's good to have a goal!
    You mention Bi polar -there's a big connection between depression and pain ...and depressed patients are likely to feel higher pain levels than non depressed patients....obviously I realise Bi polar isn't only depression but it's something worth thinking about ...and discussing with your psych doc maybe.
    Have you tried steroid injections into your discs?this is also another option worth discussing with your spinal doc and maybe get a second opinion on surgery
    We all feel your pain and frustration!least you have a partner that is standing by you and supporting you....
    From experience I know what a painful nitemare it can be,working in a physical job in severe pain 8hrs a day.
    I vomited at work I was in that much pain I was sent home and I haven't returned since ....and i won't be returning to that job either ......
    Facet joint Arthritis L3,L4,L5,DDD.
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