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Screaming Eagle
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   Posted 12/9/2010 9:51 AM (GMT -6)   
 
    I have gone as long as I can with my pain, and have made an appt with my PCD for tomorrow. The neck problem is back as well, and I think another Epidural is due. Plus I really need around the clock meds. I feel badly right now.
 
     will update when I know more.
 
         Thanks
 
 SE

Mrs. Dani
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   Posted 12/9/2010 9:57 AM (GMT -6)   

 

  

   Dear SE,

     I really hope your appointment goes well. I am terribly sorry that your pain has been so high. You have an incredibly high pain threshold. I know if you say it hurts, well then it must hurt a great deal. Let us know how things went when you can sit for a bit.

*warm hugg*
       dani


TWO roads diverged in a yellow wood
And sorry I could not travel both
And be one traveler, long I stood

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tmjpain
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   Posted 12/9/2010 9:59 AM (GMT -6)   
 
 
 
          Aaaah my poor buddy. I know it's been pretty rough for you
 
            the last weeks and that you are suffering badly.
 
              I sure hope the doc helps you out tomorrow.
 
            I can certainly feel for you as I am in the same boat as yourself
 
          and am seeing my pain doc today about a script for methadone.
 
           You and i have not quality of life.
 
           Hang in there my friend!!!!!   Love ya tons!!!
 
 
SUZANE

One day at a time!!

breezyP
Regular Member


Date Joined Nov 2010
Total Posts : 85
   Posted 12/9/2010 10:18 AM (GMT -6)   
Awe, Im sorry you are having so much pain:( I hope that the doctor can help you.
back on lyrica and also on imovane. Im seeing my family doctor once a week for the next 4 weeks.

botox injections January 10th
4 series medial block injections starting December 22nd

nasalady
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Date Joined Sep 2009
Total Posts : 1176
   Posted 12/9/2010 11:32 AM (GMT -6)   
Dear Michael,

It must be so disappointing that your pain levels are continuing to be so high even after your surgery. My heart goes out to you....you're in my thoughts and prayers! I hope that you and your doctor can find a solution that really works for you.

(((((((((hugs)))))))))
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, AIH, Hashimoto's, lupus, fibro, RA, celiac, asthma, psoriasis, adrenal fatigue, pre-diabetic, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, severe lower back pain, cubital tunnel, tarsal tunnel, Suprax, Malarone, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Liothyronine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec

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Monty's Mom
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   Posted 12/9/2010 12:37 PM (GMT -6)   
SE,

I am sorry to see such a good person in so much pain! I pray your doctor will help you tomorrow and that you get relief soon! I know you have been in pain lately and hope that things go well tomorrow!

Sending gentle hugs and healing prayers,
Mindy
The worst sin towards our fellow creatures is not to hate them, but to be indifferent to them. That's the essence of inhumanity. George Bernard Shaw


Pelvic adhesive disease, Irritable bowel syndrome, SI joint pain, arthritis, kidney stones, depression, 7 pelvic surgeries for pain, ovarian cysts, adhesions.

straydog
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Date Joined Feb 2003
Total Posts : 16295
   Posted 12/9/2010 1:06 PM (GMT -6)   
Hope your dr listens and will either increase your current medication or try a different medication. Are you on any muscle relaxers, one at bedtime may help, can''t help but think you have a lot of that going on by the end of the day to add to the misery. It's rotten to suffer as many of us do.

Take care.
Moderator Chronic Pain Forum

Chartreux
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Date Joined Aug 2006
Total Posts : 9664
   Posted 12/9/2010 1:42 PM (GMT -6)   
Michael,
So very sorry your pain is out of control again, hopefully you can get those nerve block injections
scheduled before Christmas...
Prayers and many many healing hugz and keep us posted as to how your doing...
Worried about you...
(((((((((((((((((((((((((((((((((((((((((((SE)))))))))))))))))))))))))))))))))))))))))))))))
Healing hugz
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

Screaming Eagle
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Date Joined Sep 2009
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   Posted 12/9/2010 2:14 PM (GMT -6)   
 
   Stray, I'm hoping he will put me on a long term med like methadone. I keep reading that several members have had good luck with it. They just will not do Oxycontin around here anymore. Thank you all for your support, and it means so much to me!
 
   Part of the problem is me, and I just saw him last week, and was having a good couple of days when I saw him. Silly stupid me said "I feel much better" The next day I started down hill, and it has been that way ever since. For the longest time I was good, bad, good, bad, good, bad, and I was thinking and hoping that I was on my way to a better recovery.
 
   I had a Epidural in my neck right before my lumbar surgery, and it has kept my neck at bay until now. That combined with my lower back, plus the nerve they cut through in front is just too much for my pain tollerence to handle. Short term meds make it hard on a person in the morning when I have been off of them for 9hr or so as well.
 
    I suspect he is going to want to do the Epidural first to see if that will fix part of the problem. The nerve damage in front I can live with and olny hurts when I take a shower and give it a good scrubbing. Ouch! I grit my teeth when I do that!
 
     This also takes a toll on my TMJ as well, as I also grit my teeth during the day as I try to work through the pain. I feel like an idiot, as I should have told him everything that was going on with me.
 
     There is also a med called Embeda, and I will ask him about it again. Im not sure if it is a short term med or a long term one.
     I do have Flexeril, but It does nothing for me at all. I usually sleep pretty good after a days work, but I have been wakeing up in the early am hours, and cannot take my meds, because I start them at 7:00am and keep on a strict schedule with them.
 
       Again, Thanks for the concern. I just hope he will make an adjustment somewhere.
 
         I'm miserable at the moment. If I missed someones question above please forgive me, as I just dont have the mental strength to check it and keep it in my mind. I even hate posting this! Every second my thoughts are on pain. I don't see how TMJpain does it, with no help from meds. She suffers way way more than I do. Bless her heart!
 
  I'm done! sad
        SE
 
 
 
  

solar powered
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Date Joined Nov 2007
Total Posts : 538
   Posted 12/9/2010 2:46 PM (GMT -6)   
Michael, I am so sorry to hear that you are suffering again. I know everyone here including myself wished they had a way to make your pain disappear. Unfortunately we don't. You have given so many here so much support and compassion. It's your turn to be on the receiving end (((HUG))). I hope that your doctor comes up with a good plan to help you in ways that we can't. Just remember we are here for you whenever you need us. Please take care and remember to breath. Lee
Attitude is everything.

Retired Mom
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Date Joined Feb 2010
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   Posted 12/9/2010 3:18 PM (GMT -6)   
SE,

I too wish there was some way to help or some magic pill I could create to heal us all. I'm glad you decided to go in for help and not to keep continue to tough it out. It's so hard after the pain is out of control.

I can't type much more right now because I just got home from my RFA and can't think or type straight.

I hope you find relief soon!
Retired Mom

straydog
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Date Joined Feb 2003
Total Posts : 16295
   Posted 12/9/2010 3:52 PM (GMT -6)   
Embeda is morphine and Naltrexone hydrochloride and it is an extended release medication. Someone on here is on this one and I cannot remember who it is. No alcohol at all with this drug, not even a small glass of wine, I am sure its the Natlrexone reasoning. Methadone is another good one for long term use, your biggest problem is the drowsiness the first two weeks or so on it. Ask your dr about Zanaflex if you have never tried it, works well for some, you know how it goes may work for one but not another.

I understand the TMJ thing all too well, I wore splints for several years, stemmed from a car crash. It will contribute to neck pain too. Unless you have great dental insurance, the splints are very expensive, the other alternative is you can buy at the drug store these splints to help especially with the teeth grinding at night when you sleep. Saves on the teeth. You can put them in warm water to soften them somewhat to help mold to your mouth & teeth better. These are made specifically for the teeth grinding. I don't have dental so I do this and it does not aggravate the TMJ but helps out with grinding all night.

Tell your dr when you saw him that you were having a good day & one more time you thought this was your chance of an upswing of more good days to come only to bottom out one more time. Just tell him you have been riding this merry go round and you are tired of riding it and getting worn down by it, he should understand. Tell him you have more bad days than good but you were trying not to give up on things. Maybe it will go well-is this your PCP or the surgeon?
Moderator Chronic Pain Forum

Screaming Eagle
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Date Joined Sep 2009
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   Posted 12/9/2010 5:36 PM (GMT -6)   
It is my PCD. Surgeon cut me loose after 6 months. I hear you, and will heed your advice, and actually you describe me very well.

We will see what he says tomorrow. You are so right in that it is wearing me down. My hope has been over ridding my reality with all this.

He did mention methadone to me on the last visit, but I shrugged it off, and now I kinda think he really knows that I'm going to need long term care.

I'm guessing zanaflex is a muscle relaxer? The extended release med is what I probably need. I dread the mornings and late afternoons, and am totally worn out all the time.


Thanks for the suggestions

SE

I just saw that the zanaflex is a muscle relaxer on another thread. So scratch that question!

Post Edited (Screaming Eagle) : 12/9/2010 4:42:36 PM (GMT-7)


PAlady
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Date Joined Nov 2007
Total Posts : 6795
   Posted 12/9/2010 6:27 PM (GMT -6)   
SE,
Sorry to read that things aren't going so well for you. I do understand the difficulty of letting go of the hope things are going to improve from surgery, but sometimes it's a relief to acknowledge "what is" and deal with it rather than hope for what might be, but never comes. But I know it's not easy. Been in your shoes. I waited over 2 years to finally let go of the hope those nerves might be healing and would one day magically stop hurting. I was lucky that my surgeon hung in there with me, at least as far as prescribing meds, because I had no other options at the time. Now at least I can begin to figure out what the rest of my life my look like - in reality, not in the fantasy I wanted. But now I can also deal with it.

I hope things start coming together for you.

PaLady

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 12/9/2010 7:00 PM (GMT -6)   
PaLady, Yes I believe you are correct! Each person has to come to terms with what it is sooner or later. I just did not know what that time-line was for me. But I think I'm getting there.

This whole thing has been quite a shock to me, as I remember my strapping young self smilewinkgrin Never ever in my wildest dreams did I think I would end up like this. My strength is gone for good! sad

Thank you for stopping in to advise! I sincerely hope you do so more often. By they way, do you keep in touch with Skeye? I have not heard from her in some time. She is a spunky little gal, and is missed as well.

SE

grainofsalt
Regular Member


Date Joined Aug 2010
Total Posts : 215
   Posted 12/9/2010 7:17 PM (GMT -6)   
Scream Eagle, I'm sorry hear that your situation has gotten worse. It has been a few months since I logged on but if I remember right, your situation was better back then? I know how chronic pain can be a roller coaster from good weeks and months to bad weeks, months, and even years.

I was talking to my PM doctor the other day about medication scheduling and frequency was brought up. She said that she prefers when patients take charge of their pain by limiting use of narcotics for the times that its more severe, and utilizing NSAIDS, TENS, heat-cold when the pain is more bearable. As I know my PM doctor quite well, I honestly think this was more if referance to tolerance and over medicating, therefore making the medication less efficient during times of great pain. One of the BIGGEST KEYS ive found that helps in working with your PM is to have atleast a few pills left over. For some medications, this just isnt possible if they are super potent and short acting. However for me, when I was on tapentadol, I always tried to not use it a fews times when it was bearable and then would come in and show the doc that I still had some left. I would say honestly that we not only have trust, but have almost developed a friendship and talk in details about my pain, the effects of medication, and just general medical discussions. Since I've been doing that, she also pee tests me much less frequently, down from every other month to bi-annually.

Now I'm only giving this as a grain of salt advice because my pain IMHO is more managable than most peoples. As a matter of fact, I'd almost consider my pain mild when read in comparison with other stories. I'd rate my pain in the 6 to 7 range (moderate to moderate severe), but I think about 50 perent of the regular members here would consider a pain level 7 as a blessing. My heart really goes out to those individuals (you know who you are, I'd name names but I don't want to accidentally leave someone out).

After weening of the Tapentadol, I requested a switch to Codeine and my doctor was fine with not only switching the meds but also writting enough for round the clock pain control. She is also aware that I have tapentadol left over from a fill 3 months ago and is fine with me using that for breakthrough pain.

Screaming Eagle, would you consider yourself to be both a patient and a friend of your PM doctor? If he or she is not willing to build trust with you, or give you trust after you've proved yourself, it might be time for another PM doctor. The "TEST" phase should really only last for about the first 90 days. By this point your PM should know that they can trust you, but thats just my opinion.
MRI revealed disc bulge and test injections revealed RA. Radio Freq procedures have decreased the severity of pain by about 1/3rd. Was on Nucynta (tapentadol 50mgs) for several months, but due to a decrease in pain, I now used Tylenol #3 with Codeine and .5 mg Klonopin. Go ahead and laugh but the Codeine works well ;)

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 12/9/2010 8:02 PM (GMT -6)   
Hello Grain!

I have a wonderful relationship with my Dr. I did with my Surgeon as well. I always take in my meds to show them that I'm on tract. In fact, I will be taking in a half of bottle tomorrow when I see my PCD. I knew early on that I needed to build a good trust with him so there would be less of a so called hesitation on his part to script meds to me. I told him here a while back I would pee in a cup for him all day if he wanted me to, and he just laughed and said no need. With me it is not a matter of trust as much as it is the government taking a hard peek at many of the PM's issue of meds to their Patients.

You did hit upon a note in your reply that I wanted to address, and it may seem odd to some here. I used to have a scale in my head of my pain, but when I had my surgery, and felt that kind of pain, it made me think about my own scale.

I actually re-calibrated my pain scale to a lower number. Does that make sense to anyone? The nurse just after surgery kept asking me what my pain scale was , and I kept saying I was a 20!....she would say now, now, we need a number from 1-10 and I would say again I'm a 20! Now, some of you might giggle at that, but later it made me think that if that was a 10, then my earlier number of a strong 7 must have really been a 4. I don't know how I come up with these silly thoughts, but I just wondered if anyone has ever given this a thought.

Thank you for your reply Grain, and I do agree with your thoughts, but trust is not a issue at all between my Dr and I. I think the issue has really been me fighting reality, and keeping my meds low, hoping that I would be off of them as I got better. And of course, it is hard on a person when your body is teasing you with good days, and I had several, and may in fact have more in the future.

I just don't know at this point what to expect, and how it will all turn out. All I do know is that I'm very tired of fighting it. I'm not one to give in easily on anything. Pain all the time is just a real pain to deal with. I used to have a lot of strength, and it is gone.

I feel defeated at this point, and I don't like it at all

SE

grainofsalt
Regular Member


Date Joined Aug 2010
Total Posts : 215
   Posted 12/9/2010 8:32 PM (GMT -6)   
SE,

I definately understand that pain relief > than being too cautious or using too little medication. If a person is in severe pain, they should not undertreat it for the sake of using less medication because in that case, the benefits are far less than the cons, which is unneed suffering. I forgot to make that point in my last post.

I think it is very good that you have that level of trust with you doctor. Since that is the case however, I can really understand why you feel lost at this point. I certainly would too. I'm not sure what to say except that hopefully you will be able to ride this wave out and that hopefully the government will reduce its eyeing of your health organization in the coming months so that your doctor can more freely prescribe what is needed. I wish I had a better answer on this one. Don't give up the fight though. I have been there before my friend and sometimes it just seems like accepting defeat is the best answer. IMHO, its definately not the best answer because severe pain is more than just a dsicomfort issue, it also adversly affects your health and can shorten your life.

As for the pain scale, I have personally thought that they should change the scale from 1-10 to 1-20 so you are not alone ---> Is my pain a level 7 or is it an 8? Well its really not quite bad enough to be an 8 but I feel 7 understates it, so I'm going to go with a 7.5. However, 7.5 just seems like saying 7 with added emphasis. I think changing the scale to 20 would give more numbers to identify the moderate, moderately severe, and severe ranges better. For example a 12 could be considered high end moderate where as a 13 could represent the entry of pain on in the moderately severe category.
 
 
MRI revealed disc bulge and test injections revealed RA. Radio Freq procedures have decreased the severity of pain by about 1/3rd. Was on Nucynta (tapentadol 50mgs) for several months, but due to a decrease in pain, I now used Tylenol #3 with Codeine and .5 mg Klonopin. Go ahead and laugh but the Codeine works well ;)

MIKEL99
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Date Joined Feb 2010
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   Posted 12/10/2010 3:20 AM (GMT -6)   
  Hey Michael , I'm sorry I'm late getting here , but I want to support your decision . I think your doing the right thing , there's no reason for you to live in such pain , get the help you need to feel better .Please keep us updated on your condition and take good care of yourself , all blessings to you and your family . Mikel

flower123
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Total Posts : 856
   Posted 12/10/2010 4:49 AM (GMT -6)   
Hi SE. I'm sorry that you're having so much pain.

Thinking of you,

Flower

tmjpain
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Date Joined Oct 2008
Total Posts : 2024
   Posted 12/10/2010 4:56 AM (GMT -6)   
Good luck at your appointment my friend. Maybe you and I will be starting methadone together and we

can compare stories!!! Love ya!!
SUZANE

One day at a time!!

Pete trips again!
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Date Joined Nov 2006
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   Posted 12/10/2010 5:48 AM (GMT -6)   
So sorry you're still hurtin Big Guy! UI had no idea it was so bad! I sure hope the doc can help you out today! One thing, make sure you check out everything about methadone before taking it. I've been on it for 6 or 7 years and I think it's a lifetime comitment!!! It's almopst like once you go that way, there's no turning back!!! It's sooo different then all the other meds out there!!! Good luck!!!
Pete
When I was young & stupid I broke almost every bone in my body and I'm paying a heavy price now but I'm still here and so glad to see my two sons grow up to be fine young men, both are in the Navy. I'm so proud! My biggest health problem>> I'm a certified Luny~Tune!!

damouthy1
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Date Joined Sep 2009
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   Posted 12/10/2010 6:27 AM (GMT -6)   
Hey SE, I hope that you have a good Dr. appointment today and are able to talk about some different med options. I am sorry you are feeling so bad lately. You will be in my thoughts and prayers, let us know how it goes.

Take care,
Shannon
Gentle Hugs,
Shannon

Fibromyalgia, Chronic daily headaches, Migraines, Possible Graves Disease, GERD, High blood pressure, Depression and Anxiety

Oxycontin, Percocet, Lopressor, Lexapro, Omeprazole, Promethazine as needed for nausea, Ventolin inhaler and Vitamin D3

Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 12/10/2010 7:20 AM (GMT -6)   

 

    I will be there in a couple of hours, and really have no idea what he will do for me. All I know at this point is that I hurt, and need some relief. The medication will be up to him.

    Thanks to all for the concern.

         Later,

      SE


Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 12/10/2010 5:29 PM (GMT -6)   
OK! Saw the Dr today!....and I love this guy!

I took in my remaining meds to keep that trust building. It probably was not needed, but he did examine it, and clearly saw that I had a half a bottle left since my last visit.

He first addressed my neck issue, and said that an Epidural probably would not work from the symptoms I told him about, and suggested a Trigger Point injection to start with. Next he took another look at my scar and groin area where I have intense pain if I touch it (scrubbing it in the shower) I also showed him that my stomach is now off center by 1 inch and he thinks they overlapped the muscle when closing me back up from the surgery. It is the reason that I have tugging and pulling when I stand up or walk, but strangely it is not too painful unless I scrub it in the shower. (or at least I though so) This includes my upper thigh as well. He shared some photos of the nerves in that area with me, and said while they try to avoid the major nerves, the smaller ones just cannot be avoided. They may not ever heal properly according to him.

Next we visited on the lower back issue, and as always he asked me what I thought I needed. This always makes me nervous, and I try to avoid giving him an exact medication I have in mind, so I told him all I could do was to name a few of them and let him make a determination as to the one he thought would be best. I rattled off the muscle relaxers first, and he frowned and said he was not keen on them and certainly not for my problems. I then said that the (Oxycontin) word was the unpardonable sin around here and for that fact around the rest of the country, and I recited several other medications to the best of my memory. This is where the conversation got interesting! I told him what I thought I needed was a extended release med with oxycodone as a breakthrough med. When I mentioned Dilaudid, Fentanyl, Embeda he said that those were for severe chronic pain (8 or better) and that if I ever got to that level he would send me to have a pump put in.

Now, I don't think my pain is severe at this point, (an 8 or better) but it certainly is not a cake walk either. What happened next almost floored me! He said I was right, in that I probably needed an extended med at this time and said he was going to script me Oxycontin again. Three months ago, it was a big no no with him. However, since the new formulation has come out, I think they are starting to loosen their grip on some of the PM's & PCD's, at least in this area. By this time I was doing everything I could to keep from grinning ear to ear, and not because it was Oxycontin, but that I was now going to receive an around the clock medication. I have hated the up, down, up, down, of the short term meds. Now, maybe in the mornings I won't feel so bad as I get ready for work.

I asked him what number he had in mind for the Oxycontin and he said #30....and this is where I always stick my foot in my mouth....and said "I want to stay on the lowest dose I can, so please start with #10's first" Did I just say that?!!! Slap me silly!
I did not realize he was so pro pain pump until today, and he told me that the Fentanyl and Dilaudid were usually reserved for the worst cases, and that instead of giving them orally he prefers the pump. If and when I build up a tolerance to the Oxycontin, and it becomes no longer effective for my treatment, he will consider the Pain Pump for the other meds instead of taking them orally.

This morning I purposefully did not take my Percocet as I wanted him to see what I really feel like....WOW!....That was a mistake! I did not realize just how much the med was helping me, even though I was still hurting so bad. I had gone 13hrs without my last med. Remind me to never do that again!

Right now, I'm flat worn out, and need some sleep. Pain does that to you! Right or wrong or indifferent, I can sleep with some peace tonight knowing that my Dr is on my team, and not going to let me suffer if things get any worse. Knowing that just lowered my pain scale by 3 points!

Also for those of you wanting to know....yes the Oxycontin's now have OP stamped on them instead of OC.

Thank you all for your support....it has meant the world to me! It really has! I could not ask for a better family of friends. We all are in this together!

If some of this makes no sense to you...I'm very tired, and I could have possibly made a few mistakes in my statements. I'm just tired and still taking in what happened today while in this fog. At least there is hope now.

I'm also scheduled to go back in 30 days to make any adjustments as needed. He really wants me to use the Percocets as breakthrough, kinda of hard to do when I asked for the #10's (Dummy me)


SE

Post Edited (Screaming Eagle) : 12/10/2010 5:18:11 PM (GMT-7)

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