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Joined for support have I done something wrong??

I chose chronic pain , but I've posted under back pain and sciatica, and neck pain and posted my story. I have had some replies but it feels (with a few exceptions) NO ONE has either answered questions I've left on their posts and it seems no one has anything related or to share with my posts. Is there a procedure to this am I not posting correctly. It does seem on those I reply on I try to empathize or get answers that seem relate-able to my condition/situation, and there are many other replies on these posts but its almost as if mine get overlooked. Which is why I am asking am I not doing this correctly. Then I have to really search out things Ive posted. I dk I guess I was just looking for support that others seemed to be getting. This physical disability thing is very new to me unfortunately....I was healthy, 48 yr old and 11 months later about 9 different diagnosis and not one of them seems to be the actual diagnosis. Hopefully someone will explain if I'm posting correctly or maybe my situation no one feels compelled to contribute info thats what I thought this forum was for and joined. Some people have like more then 50 replies. Please help if I'm doing something wrong to post.
This can't be happening


  • dilaurodilauro ConnecticutPosts: 9,875
    things can take time. People read your thread and depending on what and how you put it together may be the measuring stick to see how many respond. The two biggest situations I have seen here is when members do not provide enough details for anyone to respond OR Members complain too much either about their pain or their doctors.

    Give all of this time. There have been new posts tht were not answered for weeks
    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
  • Most of the support I get here is from just reading other peoples posts. If I'm looking for diagnosis and or other medical advise looking at this post you put up if the professionals got it wrong I don't think this is the place to look at far as that goes. I do not know if there are doctors here, it does not appear so. I had one surgeon tell me before my surgery that he did not care about the size of my scar as he was going to do what he needed to do and that if I was looking for a plastic surgeon I should look to someone else. My ex asked how big the scar was going to be. It was not that I was worried about it nor her as we just wanted the surgery done but the answer he gave and the way he gave it was with no care or compassion. My point I went to someone else who seemed to care and in the end considering what type of condition I'm in now I'm glad I did. If your not happy or you feel you have not gotten proper treatment get someone else. I suppose it's kind of like this forum at times I get good stuff at other times I don't.

    I'm with you as far as Dr's and the like I did not go to med school and they seem to speak a different language, all having different things to say and different ways to treat it. Remember... what do you call a Dr that graduated last in his or her class ((doctor)). Still far better than me in every regard as far as anything medical but in truth Dr's are people to and that the same that goes for a forum. If you do not like my answer or what I had to say your probably right in thinking so, I have debilitating pain, depression, and anxiety plus look at the time it's 4am eastern, I could not sleep last night so if I were you anything I had to say I would take it with a grain of salt as with most people ((right))?

    I do hope you get some type relief best of luck
  • I think no one is responding because they really don't know what to say. The doctors are having a hard time figuring out your case, so of course a "normal" person on here wouldn't really understand it all. It doesn't mean we aren't here....don't you have an appointment coming up with a rheumatologist soon?? I know I have been praying they figure things out for you.
    Spine-Health Moderator 
    Ankylosing Spondylitis
    Bulging discs T12-L3
    Annular Tears with Disc Extrusion L4-S1
    Moderate Central Canal Stenosis
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    Spinal enthesopathy
    L4-L/5 PLIF with cages, rods, screws 2/15 

  • Jillybean079 said:
    I think no one is responding because they really don't know what to say. The doctors are having a hard time figuring out your case, so of course a "normal" person on here wouldn't really understand it all. It doesn't mean we aren't here....don't you have an appointment coming up with a rheumatologist soon?? I know I have been praying they figure things out for you.
    ya thats it!!!
  • Yes, people do care. It's great that you can ask for support. Give it time and understand that sometimes post are missed, or as the person before said...sometimes people just don't know what to say or feel like they can't contribute anything to your situation. I think that is just the nature of forums, not anything personal at all. I hope you find what you need and soon feel welcomed and supported.
  • Mr. DiLauro, and Jcham 12 and others I have PM, thank you honestly the responses help one not feel so alone. Going for the decision of surgery over a epidural was because it was so clear cut no pun intended and in the end an epidural 2 months later left me disabled so I am frustrated, with no clear diagnosis. I to Jcham am posting late hours into the night or early morning because I can not sleep. The pain management that my dr recommended by the second visit turned me back to original surgeon. So no clear diagnosis and no real "pain relief" I attempted to go see a nephew in a wrestling match just an hour away by the time I got there, my son drove btw, I could barely walk getting out of the car and that was with making stops along the way. Then I brought all my pillows into the arena which was almost impossible because of security issues but even in btwn matches I was up barely able to walk and then sitting just increased the pain. Lost my job, my benefits have been exhausted I'm on one income now with 3 kids. I'm just at the end and he still has never suggested a nerve test? Yet when I read other posts Dr's have perscribed them and given patients a diagnosis. I'm physically and mentally exhausted I'm researching the "what it could be" and letting my family down in the interim.... Thank you all....might change my how did I get here to FRUSTRATED ...lol
    This can't be happening
  • I'm here to see what other people are going through but by no means do I use this as a support system.
    I thought my depression was coming from one of the medications I take, so I log on here and ask. Even something like that I still do not have a solid yes-no answer a far cry from solid support and or treatments. Yes it does feel good to know I'm not alone but again a far cry from a solid support system.

    If they are sticking you with a needle giving epidurals you must have a diagnosis, Dr's don't normally attempt treatment unless they know what the problem is at least not from my experience?? Best of luck with our situation, God Bless
  • itsautonomicitsautonomic LouisianaPosts: 1,817
    Going for long periods without a diagnosis impacts hope. Unless you have been through it, it's very hard to give advice on. When I was going through my diagnosis years this site was helpful in terms of talking to someone , but finding others with similar issues with diagnosis problems and similar synptoms were few and far between. If the issue is from the spine this is the spot, if it ends up being something else neurological or brought on by surgury this may not be the best place. But without knowing what's wrong how do you know where to be. It's all so very overwhelming. As someone who has been there all I can really give is my story, which I have talked with you about, and say you must trust your body and instincts going forward. The answer is out there somewhere and all I can say is knowing what it is, no matter how bad, is better mentally than not knowing. By far. What helped me the most was just reading that other people had been misdiagnosed for years before finding reasons.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • oh i understand now...possibly being treated for something you dont have ((ok)). gotcha!!!
  • Hi. I just joined a couple of days ago & I know what you mean with not knowing diagnosis or cause. I have had pain for over ten years. I am a 38 year old female who is trying to stay positive. From 2001 until 2004, I was a healthy & very active police officer, working in the patrol section. I went to the gym daily & enjoyed my runs & my road cycling on my time off. In 2003-2004, I started losing feeling in my left foot & It would flop when I walked. I also was feeling a lot of pain from my buttock; shooting down my leg. I saw my doctor, who sent me to a chiropractor & a physiotherapist. I felt they did not help, but kept seeing them. I had MRIs & x-rays of pretty much all my body, but nothing showed. By May 2004, I was no longer exercising in any way due to pain & had visited the ER a few times for the pain, as no medications were helping. I did acupuncture & saw an osteopath as well, but that did not help either. I was losing weight eventhough I was no longer excercising. By August 2004, I was on disability from my job. I finally saw a neurologist in Spring of 2005 & she said I had sciatic neuropathy. We do not know what started this issue, as I do not recall any big injury. It just crept up on me. I started taking Neurontin & after about six months, I was able to go for short walks & started easing back to work (in an accommodated position in civilian clothes). I would work, but by the end of the day, I was in bed everyday after work due to pain, exhaustion & keeping a front that I was feeling okay. During this time, I was seeing a pain specialist, doing physio exercises at home & talking vitamins, as well as neurontin. About two years ago, it seemed that the pain & uncontrollability of left leg & foot were getting very worse & I was hardly able to get through a day's work. Sitting & standing were even way worse than before. Needless to say, I haven't gone for a walk since September 2013, nor have I worked since November 2013 & I am back on disability. A new doctor I started seeing in December 2013 recommended I start using a cane. The cane helps & I use it all the time. It is a must. I am also switched over to Lyrica. It helps somewhat, but seems to just take a small edge off the pain. I spend a lot of time in bed, as lying down is most comfortable. I saw another neurologist in the Spring of 2014. The EMG or nerve conduction test showed I have chronic permanant nerve damage. He said it was L5 S1 I think. I can't remember the numbers & I don't have anything in front of me right now. The doctor believes that due to the structure of my hips & muscle in that area, the nerve was irritated over the past ten years & has caused the damage. I am still trying to see if anything else can be done to relief this pain & disability. I do hope you get your answers!
  • Hey there :). I'd love to hear your story. Could you pm me or write it down here so we can all understand how it started and where you are at now. It seems to me that you like myself and most of people here need to be listened to and need to interact with others and network with people in the same boat. Many hugs.
  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    I've moderated forums and lists and often see people make long posts but they never ask a question or, they ask a question so limited that no one feels like they can respond.
    I know I come here when I'm fighting back tears of frustration or pain and I just need to see that there are others in a similar state and they would understand if they were able to hear me.
    And, I always make sure I leave here having left some support for others. I worked on a list for 14 years with well over 5000 people. Of the 5000 only about 10 people would offer support on a consistent basis. The other thousands would come and ask but have nothing to offer others. If I want to feel support I know I need to be willing to offer support but it's so difficult to remember when we hurt.
    Usually my pain, depression, or loneliness is cut in half when I leave this forum because I have reached out and tried to help someone else.
    I hope you know that people care. It's hard because illness causes us to withdraw and makes reaching out so difficult.

    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)
  • DanielCDanielC Posts: 155
    edited 04/16/2015 - 9:38 PM
    I would put together a boys and girls scout group and go out camping together. Imagine that. The tents at night in the woods and all the whining and complaining you would hear from each if them hahha. It would be interesting do actually do it :). A bit difficult logistically though.. Where should we organise it????
    Daniel :)
  • Can't in be nice log cabins with cozy fires & comfortable beds & reclining chairs? Ooooh with a massage therapist!
    My doc gives me extra meds to survive flights & traveling so I don't mind where it is as long as its warm. I'd love to actually meet my spiney friends. I often imagine what you're all like in 'real life'. It would be fascinating & wonderful to all get together.

    Thank you Daniel. Just thinking about it put a smile on my face. Isn't distraction the best spiney medicine? ;-)
    Osteoarthritis & DDD.
  • Haha. We need to sleep on hard and firm surfaces as it is good for our backs. The ones that have less pain will be in charge of massaging the ones with bad pain. I'm ok with the nice cozy fire as I am good with organising barbecues and that will be my duty :)
    We should organize it on the beach or the woods? I'm open to suggestions :)
  • I share your frustration in not having a diagnosis. Altho I had a cause (knocked unconscious by an out of control snowboarder, it took years and years of seeing special PT's, orthopedic surgeons, naturopath, pain management docs, spine specialist and having all kinds of treatments - accupuncture, rhyzotomies, prolotherapy, epidural injections before I finally got things fixed. By then my spine was collapsing in on itself so I had several fusions (L1-S1) and then last of all my SI joints were fused. Since the SI was what was involved from the beginning it was finally nice to get things (mostly) fixed. But it took almost 18 years to get to that point. The SI joint is not a very known thing and my spine surgeon had to go to a special training to be able to do it for me. I am lucky to have a wonderful doctor. But I went thru so much pain and anguish til it finally got figured out. Don't give up!!! And let us know how you are doing.
    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.
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