15 Months of Chronic Pain at 18

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zabumafu
New Member


Date Joined Feb 2011
Total Posts : 18
   Posted 2/3/2011 8:14 PM (GMT -6)   
Hello I am new to the forums however have occasionally browsed through it over the past few months. I have a lengthy story but I will be concise yet thorough in order to provide as much information as possible. I have been seeking pain relief for over a year now and have yet to find a promising method.

For those who do not wish to read it all, dont worry I understand how precious time is. I put a concise story at the bottom. If you do however read the entire story I give you my deepest appreciation. I am sorry for grammer and spelling I wrote this being sleep deprived and while doing calc homework.

16 months ago I was a healthy young male of age 17. I was the captain of the Mens Varsity Swim Team and led our team to states. I was in the top shape of my life (always had been healthy and active), 3.95/4.0 GPA, ranked 2 in my class, things were looking well. Two weeks following the end of my swim season I began to notice a slight pain in my back. Nothing too serious, I ignored it and moved on. I would also like to say that during this period I had no injuries or strenuous activity other thank surfing/skim boarding. The pain started to build and grew slowly. I began seeing a physical therapist and did therapy every day for a few months. I then coupled this with chiropractic care for 4 months with physical therapy and multiple doctors. Nothing seemed to help. The Chiropractor noticed minimal sculiosis and with months of therapy and treatment it was almost unnoticeable yet I still had pain.

Confused I tried to think of all explanations and then remembered a diagnosis I had at a young age. When I was little I had chronic headaches and was sick all the time. At age 8 I was diagnosed with an arachnoid cycst in the back right hemisphere of my brain. Doctor said surgery wasn't necessary and it explained my sinus and headaches. He said the headaches should go away just as pain does when you hold a pinch and it did. To this day I rarely get headaches or atleast I dont notice them as much. I trace this to my high pain tolerance as it takes alot to make me go into extreme pain.

I continued treatment up until we moved from Florida to Raleigh NC. Ruling out chiropractic care as months of treatment with pain levels rising, we looked elsewhere. Not knowing doctors we found a pediatrician who pointed us in multiple directions. I went to a back specialist where I was put on Zanaflex and told to work out (which I have done 5-7x a week 1-2mile run/500-750m swim). She ran blood tests and nothing too special. I then went to another specialist who put me on Etodolac for pain. I could have sworn she gave me sugar pills as they tasted sweet and had 0 pain relief. Upon our visit I asked if she did and she was offended and told me to go to a chiropractor. Needless to say I ignored her advice having already told her my history and decided to just ignore it for awhile. If I can live with a cyst I can live with pain.

Needless to say I was wrong. about a month later the pain went from a 5-7 to a constant 6-8. I began having trouble sleeping and would sleep on average 5-6 hours. I went to a doctor a friend recommended and they ran more blood tests. I told her about my pain and she told my stretching and therapy would help. I had already been doing daily stretched before every workout, every morning and before I went to bed (as instructed by physical therapist from months earlier). Upon the checkup she noticed things were worse. Pain had risen and I constantly was awaken from pain shock and muscle spasms giving me about 4 hours of sleep a night. I assume she viewed this as depression having moved my senior year of highschool. I have never been one to be depressed yet they somehow saw something and she sent me to a psychiatrist.

I couldn’t get an appt with a psychiatrist for 2 months so for 2 months I did nothing yet again. Things got unbearable and pain was now a constant 8-9. I begged my doctor for another appt because I couldnt live like this and instead of helping me, she called the psychiatrist and got me a appt 4 weeks earlier. I guess she did help but I still had weeks till my appt. In the meantime, I had abnormal joint pain in my jaw which soon elevated to the point I couldnt eat or talk. This was the first time I went without sleep for more than 2 days. I went to a dentist and they assumed it was wisdom teeth from all my pain however upon xrays found something else. I have an unidentified calcified object in my jaw and was sent to a surgen who prescribed me lorotab to cope with my sleep. This did wonders for helping me fall asleep however he only gave me 8. I was instructed to take 2 before bed and 1 every few hours as needed to get me through the weekend until I saw my psychiatrist.

My psychiatrist was very quick an brief and put me on Cymbalta and 5mg of ambien for sleep. My refering doctor mentioned fibromyalgia which I correlated with the cymbalta. Ambien did wonders for a few days with getting me to sleep however I soon had to take multiple ones to fall asleep, then redose every few hours to fall back asleep. Needless to say it wasn’t working. He then switched me to lunesta which worked for a few days and the same thing. During these few months I would get on average 1-2 hours of sleep and lasted 7-8 weeks. This was absolute hell and pain only rose. Over this course he continued to raise my cymbalta dosage from 30 to 60 to 90 to 120. I never felt depressed and told him that and continued to feel no relief. My insurance dropped my coverage of cymbalta due to my high dosage and for the next 6 days I have never been in so much pain in my life. I didn’t sleep for a week, nausea, vomiting, hallucinations, shaking, 11/10 pain scale, anxiety attacks. MISERABLE withdraw. I received prozac to cope with withdraw due to its abnormally long half life as an SSRI. Due to Cymbalta I never want to take an antidepressant ever again. I dont want medication to control my wellbeing. Following this I took my healthy lifestyle a step further to the point it began to scare me. It seemed to be an OCD type symptom with frequently eating healthy, obsessivly cleaning my room, going to be super early, stretching, planned meals and drinks, scheduling activities, I could keep going but it began to take up hours of my day and I had little time for anything else. I still have these symptoms, none of which I had before the SSRI. My psychiatrist finally got me into a rheumatologist after removing the word fibromyalgia from all my notes (6/6 rheumatolgist denied me soley due to fibromyalgia related symptoms). I forgot to mention I was also put on 50mg seroquel the same time I was put on prozac for sleep and it is as of now, the only working medication.


Seroquel the first night knocked me out for 8 hours aka my first full night sleep in months. Next night was the same and I didn’t take it over the weekends as I tend to develop tolerance to medication very quickly from experience. Sleeping was terrible that weekend and would remain in bed 12 hours of which I was asleep maybe 4-5. I took it every night during the school week with less and less sleep each night until now its remained constant (its been 9 days). I take it every night at 9:35 sharp (like I said everything is set right on time). I dont fall asleep till 11ish and wake up everyday anywhere from 4-420am. The strange thing is how exact the time I wake up is, its in that range no joke everytime. My psychiatrist trusts and understands I know how to correctly dose myself and said to increase the dose as needed. At first I didn’t want to because even though I woke up I still felt like a zombie which I didn’t like but eventually did. The result was me being an emotionless zombie till around 12pm the next day and since then I have never done 75mg. My bedtime ritual as of now is 3mg of Melatonin along with 40mg of Valerian Root which is inside a Night Time tea blend. Followed by a glass of grapefruit juice which slows the metabolism of the seroquel thus is in my system longer. This helped for a bit but am still waking up now at random intervals in the night. Its all due to pain as I often spasm and wake up mid spasm or a shot of pain down my back will do the trick. I often have to use ambien to fall back asleep but only do so if I wake up before 3am or else I will be a zombie for school. If I wake up after 3, I am awake for good.

Rheumatologist was of no help and I hope she can give me some answers on my next visit (4 weeks). She has “no idea” what to do. One thing that troubles her is my past injuries. I have broken my wrist and my ankle however I never knew I did. I found out I broke them both during a MRI at the back specialist who asked when I broke it. The bone in my wrist had healed incorrectly and they had to rebreak and fix it. My ankle is still messed up and constantly pops and cracks with EVERY tiny movement of it. I always ignored the cracking as every joint in my body is in pain and cracks with movement. When realigning my wrist, the doctor said not to sedate me to see how I reacted. I felt pain of course but the pain in my joints and back that I have 24/7 was 7-8x worse...probably why I never noticed the bones were broken.

I know I am rambling but its been over a year and a half and I can’t live with this pain anymore. I stopped taking prozac as I feel no depression symptoms at all, never have and doubt I will. It doesn’t help with pain or anything. The only medication that helps is the seroquel with sleep.

I am now 18 year old male. 5’9 145ibs. I am about to go to UNC Chapel Hill, have a beautiful girlfriend and have made hundreds of friends since I have moved. I am not sad, I have anxiety attacks due to the pain and lack of sleep but thats it.

From the months and hundreds of hours of research I have spent, I can self diagnose myself with 90% accuracy that I have fibromyalgia. My psychiatrist and multiple doctors agree but due to my rheumatologist we are keeping it on the downlow.

I just want to be pain free and sleeping again.

TLDR:

Quick Info: 18 year old male with 15 months of chronic pain (specifically back neck shoulder along spine and lower back however tends to flare out). I eat extremely heathy, workout daily, stretch, and try to do everything right. I have visited chiropracters, back specialist, pyschiatrists, you name it.

Current Medications: as of 2/3/11 -50mg seroquel at night, 3mg ambien, 40mg valerian root. Etodolac or other OTC pain meds for pain as needed (absolutely no relief, I take one pill every 4-5 weeks praying it will somehow work). I still have prozac in my system and took 10mg 3 days ago.

Past Medications: 5-10-15-20mg ambien, 3mg lunesta, 30-60-90-120 cymbata, 10-20 prozac, 5mg tizidine hcl (generic zanaflex), etodolac.

Related (or so I feel) symptoms: Dry Mouth, Constant Dehydration (drink a glass of water every 15-20 mins), Frequent Urination, chronic fatigue, joint pain, restless legs, muscle spasms, shaking, extremities prone to cold, sensitivity to temperature, multiple adhd symptoms such as concentration, terrible short term memory (esp with names, I can only name on average 5/30 people in my class whom I see and hear there names everyday), hands chronicly shake (despite influence of stimulant such as caffeine), "red skin" around lungs and back (had it since pain started, looks identical to sunburn without pain and has never left). Will update once I restore my ipad aka my medical journal.

Other medical diagnoses: arachnoid cyst in back right hemisphere, keratokonis in the right eye, athsma and allergies (since young).

Thank you for reading, I know its long I just want pain relief just like all of you!

Post Edited (zabumafu) : 2/3/2011 6:59:23 PM (GMT-7)


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 2/3/2011 11:50 PM (GMT -6)   
 
  Dear Z,
 
     Good evening. My name is Dani and it is very nice to meet you. Welcome to the Healing Well Community. As you have probably gathered from reading... we have a great support group with many caring and compassionate members. Though we are of course sad to hear of anyone with chronic pain... we sure are glad to meet you.
 
     It sounds like you have been through the ringer this last year. There are, however, a few things that stick out in your Bio. If you don't mind I would like to tell you what bothered me and why.
 
You said ~~>  ".....The Chiropractor noticed minimal sculiosis and with months of therapy and treatment it was almost unnoticeable yet I still had pain."
 
     Idiopathic scoliosis usually first appears at puberty / teenage years. Once it is confirmed in x rays you must begin monitoring. You need to have x-rays done yearly at the very least (mine are every 6mos). This is done to measure the "cobb angle" of each curvature. No amount of chiropractic therapy or exercise will make scoliosis go away. "Scoliosis" is a descriptive term. Not a diagnosis. It means, quite simply, that your spine is rotating on the vertical axis.
 
     I have been told that the majority of scoliosis cases progress at less than 1%. In the case of young children or teens the rate of progression is MUCH higher. For instance a child with Idiopathic scoliosis has a far greater chance of progression and need for corrective surgery. An adult with "degenerative" scoliosis (degenerative changes, degenerative disk, arthritis) for example usually have slow progressing curvatures that are mild and rarely progress or need correction. Usually if degeneration becomes a problem in older adults single level fusions are common. Where as a "progressive" cases need scoliosis correction (done length of spine to stop scoliosis progression). So, you are in the group that requires much more than the word of a chiropractor.
 
     I encourage you to find a regular Primary Care doctor. Tell them about the scoliosis so you can begin regular monitoring. You need to keep track of the cobb angles of your curvatures. As you finish the last of your growth the likely hood of progression is very high.
 
  Here is some information that will help.
 
 
     Take it from someone who knows. I was 27 when my problems began. "Mild" they said. "Couldn't possibly be causing you pain" they said..... here it is 4 years later I have multiple deformities. I went from 5ft 9in to 5ft 5in. I can barley walk. My doctors are shocked and no one can find a cause. Not even 6,000.00 in genetic testing could find an answer. My case is extremely rare. Your case, however, is within the age range to potentially be a really big problem. Press your doctors for regular x rays. They are cheap and are great for measuring your angles. If you have gone over a year without new x rays then that is far to long. every 6mo - 1 year for regular monitoring.
 
     Then next thing that worries me a great deal was this....
 
You said ~~> ".....I have an unidentified calcified object in my jaw and was sent to a surgeon who prescribed me lorotab to cope with my sleep...."
 
   Did you have your oral surgery yet? And more importantly did you tell your primary care physician about the calcification? I ask because that could potentially be many things. First and for most, problems with your endocrine system. You mention sleeplessness, and even anxiety. Spasms and restlessness. This could be many separate things, a mere coincidence. ....unfortunately very few things in life are a true coincidence. From your own descriptions of the chain of events it looks like your problems, quite literally, began all at the same time. Seeking the assistance of an Endocrinologist would be a good idea.
 
  Here is some info that will help.
 

 
     One thing that is very obvious is that your pain and your troubles are not "all in your head". Your own descriptions of your life are that of a very active, social young man. You quite literally have a hundred things you would rather do that to see an endless list of doctors. That alone, were I a physician, would indicate to me that you are in desperate need of a diagnosis.
 
     One thing to stop and consider. Please know I am in no way trying to be mean.. But.....  You talked about obsessing about what goes into your body. Your diet, your medications, your exercise. I ask you to slow down and stop to give what you are controlling some real thought. Your body, is out of your control. No matter how many other things you try to control be it medications to nutrition.. you cannot control your pain. None of us can. We never will be able to either. Sometimes, for whatever reason, we are given the large task of over coming Chronic Pain and Illness. Your big job right now is to learn to make your pain and your illness a positive part of your life so that you can help others. Consider going to see a "pain psychologist". These are mental health professional who specialize in chronic and terminal illness. In short, they will help you to rebuild your life from the ground up. I did. I needed to. For me. For the inside me. You should to. Its important that once you over come this, that you are able to help and guide others going through the same thing. With the obvious drive and dedication you have, I have no doubt you will over come this and move mountains. Many other young adults have problems coming to terms with these same aspects of illness. You could be of tremendous help.
 
      It really is very nice to meet you. I look forward to knowing you better as time goes by. Stay strong!
 
*hugg*
  dani

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

Chronic Pain Moderator
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Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 2/3/2011 11:55 PM (GMT -6)   
If you and/or any of your doctors truly believe that your pain is fibro then ask to be tried on Lyrica. Like Cymbalta you will need to start off on a low dose and then gradually build up to a level that helps. Just Google Lyrica to learn about it.

While there are no promises that it will help it does help many who suffer from fibro. Also even if it does work for you it may not take away all of your pain and you may still have days or weeks where your pain may increase for a while before subsiding once again...commonly called fibro flairs.

BTW: Somebody should be shot for having you go from 120 mg of Cymbalta to nothing in one move. Like many drugs Cymbalta is not suppose to be stopped "cold turkey" as the withdrawal from it can be brutal as you unfortunately found out.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

JCG32
Regular Member


Date Joined Dec 2010
Total Posts : 62
   Posted 2/6/2011 10:43 AM (GMT -6)   
Hi I am sorry for your pain. A few thoughts that came to mind and I did read the whole thing but I forget so forgive me if you stated something already. Have you seen a neurologist? If so did they do mris and emgs? Another thing that came to min is rsd because of all the injuries you have had and now undx condition. I would also try to find a pain doctor who is an anestesologist. I see a combo of many doctors but each have their role. I do see a psychiatrist because the anixety and depression being 4 years in such high pain really takes a toll but I like her to keep to the mental side and the pain doctor to keep to the physical though of course both know what the other is rx. I hope you feel better and get more answers.

zabumafu
New Member


Date Joined Feb 2011
Total Posts : 18
   Posted 2/15/2011 5:38 PM (GMT -6)   
Thank you all for the support. Its been a rough few weeks and I am trying to get a hold of everything. I'm starting to see all the pressures of the real world as I am trying to take all the responsibility of an adult being 18 and preparing myself for college.

I continue to try to live as healthy as possible however its been quite difficult. For months I have been working out (would run 1 mile, 1.5, 2 miles, now up to 2 miles one day; then swim 500,750,1000m the next day) as I thought maybe this is why I was in pain. My pain originated when I stopped working out, maybe getting back into shape would get rid of it. Despite months of getting in shape and avoiding using upperbody and back muscles excessively (where the pain is often the worse), I regressed back into almost too intense pain. We had varsity lax tryouts and a 2 hour practiced made me want to kill myself. I was so distraught knowing I prepared for hours to be able to fight through the pain and ended up not being able to move my wrist. The wrist which I unknowingly broke a long time ago would shake to the point where I couldn't control it. It throbbed and was swelling and I lost feeling in the fingers. The couch made me get off after a face off seeing my hand was shaking (which can be illegal during a face off). I had wrapped it beforehand to limit movement as any movement hurts but no help.

I went to my pediatrist today as I have been feeling sick at the same time and pain was off the roof. I have been sleeping on average 5 hours a night which seems amazing compared to before. I owe it all to Seroquel which would knock me out but now no luck. Seroquel just calmed my thoughts as I am constantly thinking or analyzing everything and anything. However this time I went to bed at around 10:30 after getting home from a wonderful valentines dinner date with my beautiful girlfriend and finishing some homework. I woke up at around 12:30ish I think and laid in bed for how long I do not know. I attempted to lie on my back like a plank as it hurt the least but I laid there as a zombie. The seroquel was still in my system as I noticed its effects but despite it I couldn't sleep. I ended up taking a lunesta at what I would say was 3am begging for sleep. No luck...at around 5am accepting that I wouldn't sleep I began to do homework.

The day was miserably long..I couldn't concentrate, pain was off the roof, trying to keep my eyes awake knowing if I shut them sleep wouldn't come so there was no point. Ended up getting a 5 hour energy to energize me through a test (even though I hate caffeine as its a diuretic and prevents what I want most). Skipping ahead I went to the doctor who said my wrist wasn't broken she thinks but says the shaking and pain is still related but why it spiked is unknown. She wouldn't help me and put me on zyrtex d (i take it normally however have terrible sinus problems lately). I can't hear or think I am so congested and I am hoping this will help but I don't know what to do for the pain. She is really sorry she doesn't know what to do as ambien, lunesta, and even seroquel havn't put me to sleep through this pain. It seems to work some days and others not.

I am beyond happy as everything I try for seems to work itself out (except for this). I got into a great school, amazing girlfriend, and I am even about to work for Apple at the young age of 18. Things are great minus this pain. My mom still tells me its all in my head and I just need to think happy thoughts. I don't understand how I can mentally feel fine but physically be in so much pain. I am about to write the resume of my life and what I want out on a document to give to my psychiatrist tomorrow as I am sick of going through his pointless tests. For the past 2 months all he does is put me on SNRI's which didn't work, then SSRI and keeps upping the dose thinking once I reach its peak I should feel fine. I think he thinks Im depressed but I tell him constantly I am not.

I am starting to get scarried that maybe I am a hypochondriac...maybe my mom is right and this is all mental but I don't understand how the pain can be so real and how I can't think myself out of it. I have an abnormally advanced sense of logic and can persuade a plethora of people. I never lose my arguments and debates as even if I am wrong I make it sound right and convincing. If I can do that to other people, why can't I convince myself that I am fine and the pain is imaginary. If you see that logic then you can see the contrary where then I thought maybe Im so good at that, that I am tricking myself. I then thought maybe its because I want pain medication to "feel good" but then I realized I was only on narcotics for a few days then was asked to take be taken off as I dont like medicine controling me..I also have little to no addictive personality so I am not scarried of them. Seems like I am bragging about my persuasion skills which may seem normal for an 18 year old who thinks he knows everything..but I am conscience and desire to learn all and more. I love to research and expand my knowledge I just see this as impeding.

All I want is the pain to be gone and to go back how things used to be

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 2/15/2011 7:46 PM (GMT -6)   
Have you had Mri's with and without contrast done of your spine? seems the next
thing to get done and ask for the results to be sent to you. Till yoou can get on
pain medicines from a doctor, try vitamin d/omega-3 and tart cherry juice as all
these help naturally with pain and the tart cherry juice has some melatonin in it
which should help in getting you sleep. Wish I could've given you better advice.
Pain is an indicator something is wrong your doc's just have yet to find it. Keep
on the doctor's...Your a good young man and I'd be proud of what
you done if you we're my son and I'd also try to help you find out whats causing
all the pain, I believe your mom loves you she just doesn't know what to do...
((((((((((((((((((((((((((((((((zabumafu)))))))))))))))))))))))))))))))))
sure hope you can get a low pain day soon, healing hugz
and keep us posted
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

zabumafu
New Member


Date Joined Feb 2011
Total Posts : 18
   Posted 2/16/2011 5:38 PM (GMT -6)   
Today was the first day I brought my mom inside with me so she could see what my psychiatrist and I actually discuss. He was clueless on what to do he said as he has no clue why the pain is not only still here but getting worse (its spread to my legs slowly which appears will be more of a burden than my back). He recommended upping my dose of prozac to 40mg (currently 30) but my mom instantly shut it down saying no medicine. My mom urged that I be sent to a natural healing clinic which I am fine with and am looking for but he also recommended I see a pain management specialist.

I am currently looking for doctors in my area and found a few pain management ones which I will bring to him for a recommendation and referral. Medicine scares my mom as the media portrays especially pain killers as commonly abused recreational substances. My doctor assured her that pain medication prescribed and taken at the prescribed dose for patients who actually have pain actually have very low chance of abuse. This helped her a little but she still wishes for me to stop taking any and all medications.

She is very depressed and bipolar and wont seek help regardless of intervention but I thought bringing her would help her feel more connected in my life. I doubt I will again as before she impedes in my view my slow progression to getting better. I know shes trying to help by doing what she thinks is right but she is slow to accept that other people than her know whats the better option for me. She has constant pointless freakouts on everyone and one time she went through my room searching everything to find something to get me in trouble. She found my drawer where I keep my medication (I hide it from friends, siblings, etc.) and proceeded to count how many of each I took and how many I was suppose to. This made her very happy as she thought I was abusing the medicine aka she could call the doctor and ask to stop prescribing me them but this plan backfired. She searched through my medication while I was (stupidly without telling my doctor) weaning myself certain medication to see if I could live my life without aid. Thus when the doctor told my mom that I had taken less than half of the dose of what I should of in the given time, she was upset to find out I was not only not abusing the medication, but doing the exact opposite.

Its strange how she loves to get me in trouble yet I know she loves me unconditionally as a mother. I hope she figures her stuff out just as I figure this out. Does anyone have any experience with pain specialist and chronic pain without any clue of its source?

misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 2/16/2011 8:05 PM (GMT -6)   
So sorry for all this crap that you're going through. I was told that I had scoliosis when I was around 15, and although they described it as mild and normally painless, I've had lower back pain for years which has gotten progressively worse. (I'm 22 now.) It's really hard to have to run around to all these different medical providers and not get a solid answer.

The fact that you mentioned the cyst, pain tolerance, and the broken bones and what not also sorta troubles me. Hopefully when you see the Rheumatologist again you can get some more answers. If not, I would work closely with a personal medical doctor and bring up everything. I know it's hard to find someone who seems like they're listening to everything and weighing all the options, but sometimes you have to look around. When you find a good doctor, I think they seriously need to look at all these past conditions. Maybe they're completely unrelated, but maybe they aren't. You won't know unless a doctor actually investigates it in detail.

Also, in a slightly off original topic note, I'm also sorry to hear the problems you're having with your mom. It's hard when a loved one has a mental illness, because they often truly believe they are doing the right thing but it's really counterproductive. At least you tried and you're willing to give her a chance even regardless of the problems you had in the past. I'm sure she does care about you and I'm sure she's worried about your health too. But yeah, I think perhaps you're right not to have her too involved in some of this if she is truly that ill. I would still talk to her about it all though, so she doesn't feel excluded. Of course, I don't know the whole situation, but sometimes just keeping people informed helps a bit.

Anyhow, please let us know if you get any updates.
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