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    Old 03-04-2010, 08:01 PM   #1
    ajosli
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    Question Scared and frustrated regarding pain management!

    I have severe diabetic nueropathy in both feet, legs and left arm and hand. It is so bad now that I cannot walk without incredible pain and even being immobile is enough to make me want to pull my hair out and reduces me to uncontrollable tears. Went to previous Dr two yrs ago and explained tingling and numbness in feetand he said "Oh,thats probably nueropathy." This was the first time I had heard of this term and had a name to give my problem. He placed me on Gabapentin. It worked for a while and all was good. Eventually I needed something more so he gave me tramadol which worked wonders for me. I had not even realized how much I had gotten used to the pain, it came on so slowly. Eventually I was having to take much more than was allowed.
    I now have 3 Dr's...Reg Dr, Nuero and PM Dr. My pain is now debilitating. I was never even given a test for this until 2 weeks ago by new Nuero Dr. I didnt even know a test for this existed. I had an EMG which showed serious nueropathy all the way to my knees and now hand and arm on left side. I am now on Oxyicontin 15 mg 3x's, Lyrica 100 3x's and Hydrocodone 10 mg 3x's daily. This does not work for my pain I am still barley able to function and on pain scale at a 7 to 8 per the pain scales on this board. My new PM of course is relunctant to raise dose and I DO understand why but this does not help me. Through my ignorance I have really messed myself up. Now to my question...How in the WORLD do I get my Dr to understand the depth of my pain? I know that from reading the posts on here that I am not alone and I cannot help but be discouraged sometimes because it seems we are at the mercy of Dr's who are forced by the addicts and pill seekers to be overly cautious, but if we cannot get help from them where do we go?
    I cannot even walk to the bathroom or even sleep for that matter without crazy pain much less run my life. If my sister were not living with me and assisting me with daily living I would well, I dont know what I would do. I today found some stockings people wear to protect them from embolisms that seem to help and use cream on feet and take some nerve vitamins of some sort and am waiting on apt for April 6th with pain Doc. He is brand new to me and I to him but I am so worried from all I have heard on here that it could take months to get to any manageable pain relief. What am I to do...I cannot lose my job but I cannot work like this. Will I have to go on disabilty? I mean REALLY??? What are my options? There are so many wise people on this board and I hope someone can help get me where I need to be. I have tried to keep this short but has turned out incredibly long and I apologize for this. If you have questions or if I can elaborate on anything in particular please let me know. I am waiting eagerly for anyone to respond and I am standing by. I am so close to the end of my rope and I am desperately hanging on. I am not a dour person and it is not in my nature to complain but I am trying to be as honest and straightforward as possible so that I may get some answers or instructions or direction of any kind. I know the relationship with PM is very new and I sound impatient but as you all probably know I am just filled with frustration and feelings of complete helplessnes.

    Last edited by ajosli; 03-04-2010 at 10:29 PM. Reason: no response

     
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    Old 03-04-2010, 09:59 PM   #2
    ajosli
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    Unhappy Please respond??? Previous too long? Help me please!

    I today found some stockings people wear to protect them from embolisms that seem to help and use cream on feet and take some nerve vitamins of some sort and am waiting on apt for April 6th with pain Doc. He is brand new to me and I to him but I am so worried from all I have heard on here that it could take months to get to any manageable pain relief. What am I to do...I cannot lose my job but I cannot work like this. Will I have to go on disabilty? I mean REALLY??? What are my options? There are so many wise people on this board and I hope someone can help get me where I need to be. I have tried to keep this short but has turned out incredibly long and I apologize for this. If you have questions or if I can elaborate on anything in particular please let me know. I am waiting eagerly for anyone to respond and I am standing by. I am so close to the end of my rope and I am desperately hanging on. I am not a dour person and it is not in my nature to complain but I am trying to be as honest and straightforward as possible so that I may get some answers or instructions or direction of any kind. I know the relationship with PM is very new and I sound impatient but as you all probably know I am just filled with frustration and feelings of complete helplessnes. On another note I AM getting blood sugar under control and working hard on that end. Thankfully I have not suffered any kidney damage yet so there is one positive for me to keep my eyes on however...well you know!

     
    Old 03-05-2010, 02:31 AM   #3
    Myofascial Pain
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    Thumbs up Re: Scared and frustrated regarding pain management!

    Ajosli,

    I can definitely empathize with your situation... just some thoughts off the top of my head... given your diabetic condition you probably want to stay away from Acetaminophen and Ibuprofen... some people can take them in high dosages but my doctor specifically switched me from 7.5/500 percocets to 10 /325 percocets due to the risk the acetaminophen levels in my blood was posing to my kidneys and liver.

    On another note hydrocodone does nothing for me. So a strategy to consider is asking for different meds instead of more meds until you figure out the right cocktail that provides you relief. The drawback to this is some meds like methadone may take 2-3 weeks to build up to saturation levels where you actually get any relief. But if you approach your doctor with the philosophy that you want to find the right meds not more meds, odds are he might be willing to give you more break through meds to cover the first 2-3 weeks if he decides to put you on Methadone or anything similar that requires a build up in your body before it becomes effective.

    Sadly my experience in pain meds is limited to Methadone, MS-Contin, Percocet, pure Oxycodone, MSIR, Flexeril, Vallium and Hydrocodone which I've said does nothing for me. Of course one risk of opiates is "chronic drowsiness" where you experience narcoleptic like episodes where you fall asleep at the drop of a hat and may even function while asleep. I've carried on full conversations while asleep and even done Level 3 (highest tier) technical phone support in a non-conscious state. Literally, I was able to do the job in my sleep and effectively. Unfortunately, a prospective client for the call center witness one such episode. So the company had to let me go despite the fact that I was promoted within the first 3 months and effectively performed my job as an escalation specialist for 6 months straight prior to the unfortunate crossing of paths with the prospective client.

    One good thing did come out of it... For the past 8 months my doctors had been trying to get me on Provigil to counteract the drowsiness. For the same 8 months my insurance company refused to pay for it "due to it's addictive predeliction." They even went as far as getting me into a "trial study" for Provigil to convince the insurance company of my need for the drug. Of course my drug company wasn't going to budge due to the cost of Provigil. Cost?!? Now why would I suspect that?

    Well after I lost my job something had to give to counteract the drowsiness. My doctors finally relented and prescribed Adderall or as its generically prescribed dextro-(sugar)-amphetamine. Which my doctors didn't want to prescribe because its highly addictive! Of course the insurance company had no problem paying for that...

    Anyways the Adderall gave me "Night Terrors"... the first time in my life I experienced a panic attack of the slightest degree. So then they had to prescribe Vallium, voila no more night terrors.

    So I was then able to work steadily for networking components manufacturer and was even promoted to Senior Support Engineer. Two weeks later a former peer got promoted to a Supervisor position. He blamed me for some major public humiliation he was subject to, when we were peers. He let his emotions get the better of him. After a frustrating call, he burst out in a rant and falsely accused me of something. I then proceeded to calmly prove him wrong of by showing him the case notes, but of course everyone was watching because of his out burst. So he ended up looking the fool! Once he got promoted to supervisor, he made it his highest priority and a personal vendetta to seeing me get fired.

    None the less I was able to get up at 4am every morning commute by mass transit to work at 8 and with an hour lunch, I would get off at 5pm and make it back home by 7:30-7:40 pm. It typically took me until 8pm to pass out, but I did this consistently on my own for 7 months straight until I got promoted and could afford to move closer to work.

    I was relying upon a Flexeril, Methadone, Percocet, Adderall and Vallium cocktail to do it.

    Sadly like I said I moved based on my promotion and it only took about 2 weeks for Mr Vendetta to get me fired so I only enjoyed living close to work for a month.

    Wow I've been rambling... Anyways hopefully I've illustrated that whats important is the right combination of meds, not the quantity. Approach your doctor from that angle and also inquire about physical therapy, injection therapies, psychological counseling (stress is a major variable in your pain levels) and anything else he can suggest to help alleviate the pain and I think you'll find him more receptive than asking for more drugs.

    Hope this helps,
    ~Myo

     
    Old 03-05-2010, 03:09 AM   #4
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    Re: Please respond??? Previous too long? Help me please!

    ajosli,
    Hi, i can't help you with any advice but i just wanted to say that i'm very sorry for what you're going through. Please try to be patient & i know that some of the other, experienced members will come along shortly & help you to answer some of your questions & give you some sound advice. These boards are very helpful & resourceful & you will recieve some great support soon so just hang in there. Dont give up & keep checking back. Take care & i wish you the best of luck.
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    Old 03-06-2010, 11:18 AM   #5
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    Re: Scared and frustrated regarding pain management!

    Quote:
    Originally Posted by Myofascial Pain View Post
    a month.

    Anyways hopefully I've illustrated that whats important is the right combination of meds, not the quantity. Approach your doctor from that angle and also inquire about physical therapy, injection therapies, psychological counseling (stress is a major variable in your pain levels) and anything else he can suggest to help alleviate the pain and I think you'll find him more receptive than asking for more drugs.


    ~Myo

    Excellent post Myo!! I think the advice about the right combination of meds vs the quantity is spot on.

    Ajosli, I feel so very bad for you and I feel your pain through your posts. I also know that sometimes when we come on the board, we see certain posts where cpers have had horribly long waiting periods before finding the help they need and this makes us feel more hopeless. Lets consider where you are now in your treatment from where you started. You now have some meds being rx for you that at least have some chance of helping you. The fact that you now have an EMG that verifies the fact that you have severe nueropathy is a huge plus for a doc who is rx pain meds. If I understood your post you just had the test a couple of weeks ago and already your meds have been changed some. Yes, It is NOT controlling your pain yet and I'm not surprised at that. You will be seeing a NEW doctor in April and while that seems like it is ages away, hang in there. You certainly have things in your favor now for getting better help. Diabetic neuropathy is horrible. Some people also have posted that they finally found the doctor who was able to help them and within days their lives have changed for the better.

    When we are in pain, it is very hard if not impossible to be patient. I really think you will find someone who is willing to help you, and when you do, it is extremely important that you follow his/her instructions to the T. You can't increase your doses on your own and remain in PM.

    I'm glad you found this board and I encourage you to keep coming back. Sometimes it takes a bit for posters to get going but they will. We are here to encourage you and hold your hand until you get to that new doc in April.

    In the mean time Hang in There!!

    Hugs from Bullymom

    Oh and a huge hug for your sister for being there for you!!

    Last edited by bullymom; 03-06-2010 at 11:20 AM.

     
    Old 03-06-2010, 12:37 PM   #6
    ajosli
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    Re: Please respond??? Previous too long? Help me please!

    Thanks so very much, I was really feeling kinda rejected when I did not get a response and others who had posted after me had and quite a few at that. I thought I had done something wrong. Thanks for your quick note of support it really meant alot to me. I was crying at the time and so frustrated, again thank you for taking the time to respond!! This chronic pain stuff is so beyond me at times!

     
    Old 03-06-2010, 12:52 PM   #7
    ajosli
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    Re: Scared and frustrated regarding pain management!

    Thank you so very much for your response it has very good advice and Im sure took alot of your time! I will take everyhting u said and do so, it is very good advice! Im am sorry for your struggles with work and I hope things have turned out well for you! You have been very helpful and I am most grateful for your efforts! I hope to keep in touch with you regarding the results from next appointment. I send you the warmest regards and well wished!
    Alicia

     
    Old 03-06-2010, 01:03 PM   #8
    ajosli
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    Re: Scared and frustrated regarding pain management!

    It feels so good and makes me tear up to have gotten the responses from u guys! I truly am going thru desperate times and it is a big weight off just hearing from those of you who not only understand but are going thru this with me! I agree with what you all have suggested and think that is wonderful advice and I KNOW things will improve, but like you said it is so very hard to be patient while in pain...;( Thanks again u just dont know what it does for my heart to hear from u all!

     
    Old 03-06-2010, 03:21 PM   #9
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    Re: Please respond??? Previous too long? Help me please!

    ajosli,
    Hello again! No problem, i am very familiar with chronic pain myself so i can relate. I havent really even told my whole story or ALL of my issues on these boards as i'm not ready to do so. I have shared a few things here & there but mainly i just read & try to educate myself on different subjects but mostly, i like to give support whenever i can especially if i can relate or if i've been there myself. I like to help, whenever i can. Even if its just a few kind words. I could feel your desperation & thats why i reached out to you with just a few kind words. Sometimes just a few kind words will give us the strength to go on & hang in there. There are alot of kind, caring people on these boards & alot of them have so much knowledge, & good resources in helping you. But it does get very busy around here but believe me somebody with more experience will be along to help & guide you with all of your questions so just sit tight, keep checking back & just try to hang in there. Also, welcome to the boards! Wish it were under better circumstances. Take care.
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    Old 03-07-2010, 11:05 AM   #10
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    Re: Scared and frustrated regarding pain management!

    To Angelique43:

    What a lovely post! So nice of you to reach out the way you did and obviously it was well received. The nice thing about this board is, you can share what you want regarding your own issues and still reach out to help someone else! Sometimes just being of service can make all the difference in how we feel on a daily basis. The name fits, I'm here if you need anything Hugs from bullymom


    To ajolsi:

    Your so very welcome sweetie. You are not alone and keep posting. I remember feeling kind of fearful when I posted my first message. It took a couple of days before anyone answered and I felt a bit like you did. I thought somehow I might have said offended someone, they all seemed so close to each other and I felt like an outsider. But, I soon learned that nothing could have been further from the truth. We have some members here who are a bottomless pit of knowledge and I have learned so much from them. They have truly made my life easier with the sharing of that knowledge. And there are posters who may not have a ton of information that they share, but the love and support they share is priceless. You will become a frequent participator before you know it. I know you have much to share here. So welcome, your among friends!! Living with cp is a very lonely existance. We are wise to not share allot of information with others except here.... here is were we come when we need to talk about it. It's safe here.

    I hope you both have a great day and thanks so much for your support!!

    Hugs from bullymom

     
    Old 03-08-2010, 12:25 AM   #11
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    Re: Scared and frustrated regarding pain management!

    bullymom,
    How sweet! Thank you so very much! And of course i extend the very same offer to you as well. I'm so very happy to have found these boards as i feel like you guys are all my extended family. I never thought it possible to care about or pray for people that i've never even met but now i know that anything is possible! Thanks again. Take care & God bless.

    ajosli,
    Hi, how are you? Please continue to hang in there & keep us posted. Wishing everyone a pain free night. Take care. God bless.
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    Old 03-08-2010, 01:57 AM   #12
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    Re: Scared and frustrated regarding pain management!

    i sure understand your frustration; if i were you i would have already filed for disability; clearly you are disabled. and as for seeinng a new pm dr; just go in there and look him in the eye and tell him what your life like-no life-be real with him and dont worry about breaking down and crying, if he is a welll trained pm dr he will try his best to make you more comfortable-but; keep in mind you probably will only get minimal relief which sounds like more than what you have gotten-good luck!

     
    Old 03-08-2010, 10:38 PM   #13
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    Thumbs up Re: Scared and frustrated regarding pain management!

    Quote:
    Originally Posted by ajosli View Post
    It feels so good and makes me tear up to have gotten the responses from u guys! I truly am going thru desperate times and it is a big weight off just hearing from those of you who not only understand but are going thru this with me! I agree with what you all have suggested and think that is wonderful advice and I KNOW things will improve, but like you said it is so very hard to be patient while in pain...;( Thanks again u just dont know what it does for my heart to hear from u all!
    Trust me I get a little endorphin rush knowing I could be of help..

    So its not totally selfless...

    Also wanted to add my appreciation to Angelique as well as flipping her advice back at her... How are you hanging in? Keep us posted

    ~Myo

    P.S. Bullymom is a huge flatterer when it come to my humble advice, but take it with a grain of salt... I think she does it to make me feel good which it does!!

    Last edited by Myofascial Pain; 03-08-2010 at 10:41 PM. Reason: Postscipt

     
    Old 03-08-2010, 11:04 PM   #14
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    Re: Scared and frustrated regarding pain management!

    Myo,
    Thanks, i really appreciate your kind words. We are all like a big family here & i really believe that each one of us has something valuable to share & that we can all learn from each other. We may all be suffering from different ailments, back, feet, what have you but we are all in the same "pain" boat. Therefore we can all relate. Take care & God bless.

    ajosli,
    How are you doing buddy? Wishing you all a pain free night. Take care & God bless.
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    Old 03-09-2010, 10:25 AM   #15
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    Re: Scared and frustrated regarding pain management!

    Quote:
    Originally Posted by Myofascial Pain View Post
    Trust me I get a little endorphin rush knowing I could be of help..

    So its not totally selfless...

    Also wanted to add my appreciation to Angelique as well as flipping her advice back at her... How are you hanging in? Keep us posted

    ~Myo

    P.S. Bullymom is a huge flatterer when it come to my humble advice, but take it with a grain of salt... I think she does it to make me feel good which it does!!
    LOL Myo... you are very welcome.... now don't forget to send that check!!

    Bullymom

    I really was going to sing your praises regarding a recent post you did, but it disappeared!!

    Hope everyone else is having a wonderful day. The march rains are bringing pain to my little slice of the planet. Hate the weather changes in the spring!!

    Bullymom

     
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