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Please help, I am Desperate!

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:23 AM in Lower Back Pain
Here's my story and I will try to make it short but I think that it may be impossible to do that. I am 44 years old and have had a spinal fusion due to scoliosis at the age of 13. I have had no problems until the past year. I now have severe, dibilitating, low back pain almost every day that will last anywhere from 8 to 14 hours. The pain is in my low back and right next to my spine usually on the left side but sometimes on the right side. It feels like the pain is deep inside, not on the surface. I have pulled muscles in my back before, and it certainly does not feel like it's muscle pain. The attack of the severe pain will come on day and/or night. In fact, while I was sleeping last night about 1:30 a.m. I was awoken by it. The pain is so bad I am hyperventaling, crying, throwing up, and lying down make it worse. Please don't suggest that it's the mattress as this happens when on vacation or visiting family, etc.
I have seen an orthopedist that gave me a complete set of x-rays and says he sees nothing, and he says my spinal fusion looks great. I have seen a neurologist and he had me get MRI with and without contrast, Bone Scan, Moving X-Rays (that's where your bending all the way donw and all the way backward for the X-Ray). They all come back normal. I have been through Pain Management and given injections that did not help at all. I tried the following drugs from muscle relaxers, Fentora, Oxycodone, Dilaudid, and Lyrica just to name a few. None of them even remotely begin to take the pain away. My last ER visit they gave me 2 shots with the second one in the vain of dilauded and it did not even take the pain away...just made me tired. They wanted to give me another one, but I couldn't stand to be there any longer, it was going on about 10 hours in the ER. I spoke with a cousin of mine that is a nurse for 18 years. She mentioned the drug Neurontin. I called my Neurologist and he prescribed it to me, I just started taking that last night. He also referred me to Chiropractor and another Orthopedist. I can't have my back cracked due to the spinal fusion, but he said they can do other things. I need help! I want my life back!
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Comments

  • I am so sorry to hear of your pain and you will find that most people here can relate to your pain levels at one time or another. I have heard that the nuerontin works well for nerve pain. There are several members on this board that use it and I am sure that they will respond to you. My only suggestion would be long acting opiates. Have you tried any of them yet? Do not give up on the nuerontin yet because I think it takes a week or so to get in to your system. I really do understand your pain nad wish I had some better suggestions for you. It seems as though lots of us chronic pain patients end up on long acting opiates and sometimes even a combo of opiates and nerve pain meds. Sometimes it is the only thing that we can do for now in order to live a somewhat normal life. I have seen several new members recently that had the fusion for scoliosis when they were young and are now experiencing the same pain that you describe. I am really sorry that I could not be of more help but I hope that just knowing that you have found a group of people in similar situations as yours to support you will help somewhat. Good luck to you and please keep us posted on your progress.
  • :) hi! and welcome to the forum! we are here to offer you support and answer what questions we can. i am sorry you are suffering so. i have no solution for you but hope the friendship you find here will give you some comfort!! nuerontin may help with your leg pain. give it a little time to work! good luck and i hope you find the pain relief you seek soon! Jenny :)
  • Hi Quinn,

    Welcome to Spine Health. Have you been to a large Interventional Pain Clinic yet? These are the clinics that can do everything from simple nerve blocks, to RF Ablations, to Acupuncture to Intrathecal Pain Pumps to Spinal Cord Stimulators.

    Sorry that you are experiencing such horrible pain. If you get into a real bad episode, do you have a doc that can hospitalize you long enough to gain control over the pain?

    Well we are always here, so if you need to holler just pull out the keyboard and type.

    "C"
  • How could I forget to mention that I was also on Methadone for about 6 months. It did not help. The frequencey of my pain just continued to increase over time while on it. I finally told my Pain Specialist I didn't want to take it anymore becasue it really was pointless. He agreed that I could go off it so I did. Thank you for your support. It really helps to know that others understand what I am going through. I will keep you posted.

  • I am going to a Pain Clinic now. It seems to be pretty large. My Dr has given me injections as well as a Tens Unit and neither helped. They do not do accupuncture, but I did go to an accupuncurist and I didn't get any relief there either. I will talk to my Pain Specialist about the other things you mentioned above. Like I said, I am desperate and want my life back. I appreciate all your advice and support. Thank you so much!

    Quinn
  • Thanks for your support. I have my fingers crossed that the neurontin will work. I actually got through the night with no problems. I have only been on the Neurontin for 2 days now and it's a very low dose. My Dr. is working me up to the Theraputic dose very slowly. In about 4 weeks I will be there. So, I am not so sure the low dose is helping so soon, or just a coincidence. We will see what happens over the next few days.
  • The key is to just not give up!!! There are so many treatments available these days, that sometimes it's just a matter of locating someone who a.) feels it will help you and b.) will do the procedure or treatment

    I knew there was more that could be done for me, however where I live it isn't available. I was able to fly to the states and get help from a big Interventional Pain Clinic. Best thing I could have done!

    When we hurt, sometimes it is too easy to give in. Stay focused an know that somewhere somehow you can possibly get more relief.

    "C"
  • Nope, I am not giving up. I want to be "normal" again, or as close as possible. I have made it my mission now to find my path to better health. Reading through so many posts I am so saddened to see how many people suffer with chronic pain. It seems so unfair. But we all have to keep searching, asking others, until we find the right Dr. or clinic that is able to help. There are many people that suffer for many many years and finally find relief and can live a good quality of life. This is an emotional subject for me. It's not until you get in situations like this that you begin to appreciate how great it really was when you were living a happy, active life. Thanks, "C" for your comments.
  • This weekend was one of great accomplishments for me. On Saturday I was able to pack up and load up all of my own dive gear and go diving with a friend. Of course there's a long story behind this, but I am only 3.5 months post op from getting a c-spine spinal cord stimulator. Today I went to the gym and spent 2 hours working out and I am psyched cuz I am getting stronger.

    All because I refuse to give up! Of course none of this was pain free, but I am now functional enough to do it.

    I don't want to hijack your thread here. Just know that even though we are in our 40's we don't have to roll over and become 80 over night! I don't plan on living the next 40 or 50 years being taken care of and being bored. No way!

    I really hope that you are able to find a doc that can either help you or point you in the right direction!!!

    "C"
  • Okay, I am impressed! That is awesome! You are an inspiration for all of us! But now you have me worried. Don't over due it! I don't want to hear tomorrow that you suffering. :S

    So true, we don't have to act as if we are 80.

    About a week ago I started Diamoxe, and for about 10 days I have been on Zaniflex (muscle relaxer I take at night), and for 2 days on Neurontin (but not at the Theraputic dose yet). I actually felt pretty good today and yesterday. I don't want to jump the gun here, but I am hopefull that one of the 3 may be working or a combo. I am not a fan of the Diamoxe. It zaps my energy. I hope it's not the one that working, I would like to stop it. We will see...one day at a time...

    Rock on "C"
  • Quinn, I am very new to the forum and very new to back problems but it seems that I beginning to know what constant pain is all about.

    I have been taking Neurontin 300 once a day for four months now. I was also taking Meloxicam twice a day but since my pain improved the Dr. took me off of it and now the pain is back. The Neurontin did make the tingling to my toe disappear but as I recall it took at least over two weeks for me to start seeing some changes. Maybe my problem has come back because it is not easy not to stoop or carry heavy objects when you are a grandmother. I wear a corsette with stays in it to protect it but I am hoping I will be put back on the Meloxicam.

    I wish I could offer some help but at this point there is not much I know yet.

    _____________

    Mary

    Age 65, MRI 19/05/08, DDD, central posterior heriation of L4-L5, bulging of L5-S1 (sorry for the bad translation from Spanish).

    Meds. At the moment Neurontin 300 ad was recently taken off of Meloxicam

  • I am sorry to hear you are suffering from constant pain. You should call you Dr. immediately and tell him since you have been off the Meloxicam your pain is back. Ask if he can perscribe it to you. It's not worth the pain to wait until your next appointment.

    Thanks for the info on Neurontin, I thought it was probably too soon for it to be working.

    Take care,

    Quinn
  • Everyone is different as to how medications effect them and how quickly they begin to work (or not work).

    When I first got diagnosed with occipital neuralgia, the doc started me on Carbamazepine, one of the anti-seizure meds. Like Neurontin, most expect it to take days to weeks to start taking effect. I knew the next day that this doc was a genius! Now it took several weeks to adjust it to a therapeutic level, but I knew in 24 hours I was finally going to get some bonafide relief!

    I take Neurontin along with the Carbamazepine and the two together work wonders for me. Neurontin by itself provides me some relief, but not anything like when it is combined with a concomitant drug. (a partner drug) I swear by Neurontin. After my surgery in 07, they began to titrate me down on the Neurontin. Within a couple months I was begging the neurologist to let me take it back up.

    Sometimes our bodies just get used to certain medications in order to function and feel "normal".

    Hey thanks for the kind words in your earlier post. I am insane if nothing else. Tomorrow I am scheduled to film a training session for a techinical diving course. Saweet!!! Although I can tell you I am going to let my hubby carry my gear down the stairs in the morning. :-)

    "C"
  • Good to know about the Neurontin! Thanks! I guess I can't discount anything at this point. Since I started the neurontin I have only had 2 pain episodes and they came during the night and they were mild. I was able to sleep through most of the episodes. Now this is a first!!! When I get my severe pain I am completely non functional. I have a wonderful 4 year old son. My husband and family have been so helpfull during those times-taking care of me and my son. As I mentioned in one of my earlier posts, one of the three drugs or the combo is zapping my energy, I feel so lifeless. Just want to lay down, but would rather be doing things. It's a struggle, but I know soon I will get this worked out. I plan on calling the Dr today about the fatigue to see what can be done.

    Quinn
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