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Old 12-18-2009, 11:14 PM   #1
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Question Searching for a way off the meds

A bit of an introduction first... I developed myofascial damage to my back after 2 auto accidents,,, both times a passenger... both times not my drivers fault...both times driver responsible was uninsured and did have a penny to sue for...

First it was misdiagnosed as a bulging disc.. after I went to a pain treatment clinic they informed me that about 60% of people have some slight malformation of the spine and my condition was caused by the fascia (connective tissue) of my muscles (myo) being torn...

So far I have been through numerous TPI's (trigger point injections), 5 basal blocks, first time they did one quadrant and the other 3 reacted harshly trying to compensate... after that I insisted they do at least 2 quadrants at a time. Huge difference... Then they did 2 RFA (radio frequency ablations) on both of my lower back quadrants...

After all that I am still taking 10mg of morphine TID, 20 mg of vallium BID. 2-4 10/325 percocets for breakthrough pain and 30 mgs of adderall twice a day to counteract the drowsiness... Ironically my insurance won't pay for Provigil an alterness medication even after I went through a 3 month clinical trial to prove I needed it. Their excuse, "Provigil is too addictive" but they were more than happy to authorize Adderall which is straight amphetamine... No addiction risk to that no sir... Oh and it took me getting fired from a job for narcolepsy episodes to get the Adderall

So with the meds I'm semi functional.. I can hold down jobs that I have current skills for but my mental acuity is about 25% of normal which makes studying/learning new skills nigh impossible... Before the meds I was an Honor student with 3 majors and even had scholarship offers from MIT that I failed to act on due to major depression due to childhood emotional abuse which I've since worked beyond..

So I'm looking at possible surgical remedies... I've researched dorsal stimulators but what I need is more of a subdural TENS unit that I can moderate with a control box that sends signals through the skin to the transmitter box in my hip.

Anyone have any information on dorsal stimulators and Myofascial Pain Syndrome or any alternative neural stimulators? My cousin has an opiate pump implant for arachitis that works wonders for her... sadly it took them 17 yrs to diagnose her condition accurately..

Suggestions anyone?

 
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Old 12-22-2009, 09:27 AM   #2
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Re: Searching for a way off the meds

Quote:
Originally Posted by Myofascial Pain View Post
A bit of an introduction first... I developed myofascial damage to my back after 2 auto accidents,,, both times a passenger... both times not my drivers fault...both times driver responsible was uninsured and did have a penny to sue for...
Suggestions anyone?
Hello Myofascial Pain. I've also been in a car accident and had a whiplash to my neck. That has been 4 years ago. I've been left with chronic neck pain.

I've also been a passenger(will talk about it later)and it was the driver's fault.
Could not sue her either. I tried to live without pain meds but it's impossible. Too much agony and sorrow as you know. tried the tens machine - was really happy with it for a while...and then it didn't help anymore, too bad. I didn't like this tens machine anyway, it frustrated me. Now on Oxycontin, percocet and neurontin(gabapentin) - it really helps me and I have my life back.

I believe I have the same damage you have - Soft tissue damage plus the bulging disks in my neck.

P.S I don't think you should take provigil, you will get addicted to it. Perhaps you should try a different pain medication like what I take. Gabapentin(neurontin)can make you a bit tired so you don't have to take high dosage, you can take for example, 800mg a day.

What can I tell you. Not sure if there is any other way then pain meds but recently I've read about something new it's laser to treat soft tissue damage. It looks promising. You should check into it but please be really CAREFUL cause it's new.

Now about driving. the lawyer I was consulted told me that most people who are ACCOMPANIED to the driver - Those are the people who get injured, not the driver. Lesson leart, drive your own car. That's what he told me, he has been a lawyer for many many years. I understand it's not your friend's fault - but since it happened to you twice you know...lesson leart.

Hope I helped some. Don't be sad. It's really unfortunate what happened to you. But it also happened to me.

I wish you a merry christmas and a happy new year! and hopefully things will get better.

Last edited by nochange; 12-22-2009 at 09:32 AM.

 
Old 12-25-2009, 03:31 AM   #3
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Thumbs up Re: Searching for a way off the meds

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Old 12-25-2009, 06:23 AM   #4
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Re: Searching for a way off the meds

have you ever tried a wonderful therepy called myofascial release? i get this along with another therpy that my myo guy also just happens to do as well called craniosacral therpy? the cranio simply helps to more even out the actual ebb and flow of the CSF(it just is supposed to have a 'normal' timing to it) that actually surrounds the brain thru and down thru the entire spinal cord within that dura. it kind of 'unwinds' stored traumas in our central nervous system and will also help to 'decongest" certain areas within that dura that can congest over time. espescilly when ANYTHING ,like chronic pain is constantly impacting it. but that myo release i have been doing for about the past two years ONLY becasue it actually works. i have been dealing with some very severe muslce damage in my upper neck down thru my blades from a surgery where they had to go into my spinal cord to remove a bleeding lesion in 2003? just simply cutting thru all that very thick muscle to even get to the cord really messed up all the muscle up there too(my c spine is also just a freaking mess). its been really painful and at times just agonizing too ever since that dang surgery. like you i tried alot of TP injections over the years(like hundreds of little seperate injections) and MANY many different types of therepies too and they never really worked anywhere near what geting to the very base of the muscle/fascia can with this particular therepy. it has allowed me to not have to even raise my OC since 2005. it keeps me on more of an even keel just by undoing the constantly generating inflammatory responses that keeps firing to the muscles/fascia that just will naturally thin out the surrounding fascia(we actually have this surrounding every muscle,organ and blood vessel within our bodies) then overly tighten around any given muscle. thats where the TPs get created and the overall muscle pain really gets generated from.

the key here is finding a really good and EXPERIENCED myofascial release person tojust do this. my PT just has over 20 years of solid experience in doing just this type of therepy. but the more experienced the therpist actually is,the better they can actually just 'feel' the bad areas by just placing a hand over certain areas of our bodies. our bodies just naturally give off the electromagnetic filed that is alsways there since we do run on eletrical synapses and currents. whenever a particular area is just inflammed,that energy actually gets much higher and easier to pick up.

this is BY FAR also the freakiest therepy i ever tried too in just how my body responds to just having my own energy kind of forced back into it to do the real work? but i would most definitely very highly recommend this to anyone who is suffering from any level of actual muscle problems. this therepist was a true lifesaver for me. this therepy is now just a very crucial part of my overall pain management now. just a really good tried and true and very old therepy that truely has helped my crappy muscle hell in all the best ways. Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 12-27-2009, 05:07 AM   #5
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Re: Searching for a way off the meds

Thank you all for the replies...

Nochange, do you have some keywords to help me search for this laser treatment?

Feelbad, so is this a specialized PT that has massage or chiropractic training... sadly there are few Pain Clinics in my metropolitan area and any aid in methods for locating myofacial release PT's would be appreciated...

 
Old 12-27-2009, 10:03 AM   #6
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Re: Searching for a way off the meds

my myo guy is actually in just a regular type of PT setting. this is also connected with my ortho surgeons facilty/group? but looking at the local physical therepy places around you, someone must be doing this in one of them? it has become very popular for people who suffer with myofascial pain. when my sci first occured back in 2003, my PT just knew back then what i needed to REALLY help with my insane level of huge TP wads that were litterally sticking up about an inch or two then under my skin? but despite her desperately trying to get my ins co to cover this therepy,they simply refused it since they just did not know how truely beneficial this could be for people with horrid muscle issues. but move ahead a few years and the very SAME ins co is now totally covering this therepy now.

i would first see what PT places your actual ins co covers then call them just to see if someone there actually does this type of therepy. chances are that someone in some PT place close to you just is doing this as part of a good overall PT program. if you cannot find one within your ins netwrk, ask the other PT places that ARE in it if they just know of someone, then speak with your doc about possibly okaying an out of network referral for this therepy. in certain cases, when a particular therepy could just really help the patient, its in the ins co best interest to just allow the referral vs having to keep on paying for other things you will just keep on needing(and that are just NOT actually working) if that very base of what is creating your real pain is not being helped.

this is what i would do if i were you. i just got very very lucky in that my PM clinic just already knew my PT person and i was directly referred only to HIM for my myo. i just think, given how bad my upper back and then shoulders got and the amazing amount of pain relief i have felt that this really would be the ideal type of therepy for you right now. it really has given me sooo much and also reduced my pain intensities too. just start doing some calling around. if you can even find more then one place that actually offers this,always go with the one who simply has the MOST overall years of experience with THIS particular therepy. it can matter. good luck with thew search. please keep me posted. MP
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 12-28-2009, 12:29 AM   #7
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Re: Searching for a way off the meds

myofascial pain, it's called low level laser therapy(LLLT) it's not a surgery, It's for soft tissue damage. but I've already told you my opinion on that one since it's new I wouldn't try it. I would wait.

How many years have you been suffering from chronic back pain? and what TID means, never heard that term before.

Last edited by nochange; 12-28-2009 at 12:35 AM.

 
Old 12-28-2009, 10:50 AM   #8
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Re: Searching for a way off the meds

TID, simply means "three times a day" in regard to taking medication.

 
Old 12-28-2009, 09:41 PM   #9
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Re: Searching for a way off the meds

Quote:
Originally Posted by nochange View Post
myofascial pain, it's called low level laser therapy(LLLT) it's not a surgery, It's for soft tissue damage. but I've already told you my opinion on that one since it's new I wouldn't try it. I would wait.

How many years have you been suffering from chronic back pain? and what TID means, never heard that term before.
3 years 5 months.. since July 2006 car accident 2nd accident Sept 2007

Daily
BID twice daily
TID 3 times a day
QID 4 times a day

My brother teaches at John's Hopkin's in Baltimore.. he's not an MD but knows a lot about procedures or who to talk to if he doesn't know.. I consult with him before undergoing any treatment... I'll ask him about LLLT see what he can find out before I bring it up with my doctor...

I'd be happy to share any feedback he gives me if you are interested....

Last edited by Myofascial Pain; 12-28-2009 at 09:50 PM. Reason: Adding

 
Old 12-29-2009, 07:45 AM   #10
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Re: Searching for a way off the meds

myofascial pain, are you able to sleep ok?. I'm asking you this cause before the accident I was able to sleep 8-9 hours. now I need to take sleeping pills so I'm able to sleep 5-6 hours each night.

sometimes I'm able to drift off without the sleeping pills for an hour or two but it's not enough like yesterday. I was sleeping and waking up sleeping and waking up. so strange and then it was 5:00AM. I've never had anything like that before the accident. it's probably my body wants to sleep and then the pain bothers it and then sleep again. though it's better now than before I've started taking oxycontin. I wasn't able to sleep at all without sleeping pills so that's a start. not a great start...but a start.

Last edited by nochange; 12-29-2009 at 07:50 AM.

 
Old 12-29-2009, 12:18 PM   #11
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Re: Searching for a way off the meds

I have myofascial pain and have had LLLT in the past. I don't think it would be effective for myofascial trigger points. It it mostly used by chiropractors and is most effective for inflamation. I did have it for a sprained ankle that refused to quit swelling even after several weeks, and it DID work wonders for that. Three treatments and I was out of the cast and walking again. Trigger points need to be treated by a physical therapist or massage therapist trained to deal specifically with myofascial release. Even then treatment is ongoing and may only relieve the symptoms and not 'cure' the problem. If the trigger points have become chronic and are wide spread(as mine are) they are very difficult to 'cure'. Treatments are primarily for pain relief and are likely to be ongoing.

Tigg.

 
Old 12-30-2009, 02:57 AM   #12
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Red face Re: Searching for a way off the meds

Sleeping... well I don't need sleeping pills, but the Adderall they gave me to counteract the drowsiness of the Morphine, Percocet and Flexeril I used to be on had the side effect of "night terrors" so now I take Vallium to counteract those. Never had anxiety attacks prior to the Adderall even with my chronic depression that I had from 12 yrs of age to about 2 years ago. The depression was caused by emotional abuse as a child so I have been able to move past it with a lot of therapy. Still I ran the full gamut of SSRIs during my treatment for depression and was on Ambien at one point.

So back to the question... my sleeping patterns are erratic. Some times I can't sleep because I can't get my back to relax. When I was on Flexeril it was the one thing sure to knock me out if I took 1 or 2 pills. When I took 2 pills though sometimes I would sleep through 3-4 alarm clocks scattered all around the room some mornings.

Now my doctor took me off the Flexeril since Vallium is supposedly a muscle relaxant as well but it doesn't have the same effect. Besides not being able to sleep due to the back tension, sometimes I can't sleep because of accumulation of Adderall over several days at my normal dosage. So for example come Thursday or Friday I may not be able to sleep because of the Adderall unless I risk taking more Percocet or Vallium than my prescribed dosage. I worry about overdosing on opiate and muscle relaxant medications so I don't exceed my daily allotment. The thought of shutting down my autonomic functions (breathing, heart pumping) in my sleep via overdose scares the hell out of me. Which means I am up all night and end up taking extra Adderall he next day to make it through. I know there is a risk in over dosing on Adderall but if I am awake then I can call an ambulance and get myself to the ER. So I choose the risk that I will at least be aware of over the chance of not waking up permanently.

Of course my pain levels aren't constant... My level of physical activity and emotional stress are constant factors in determining what percentage of my prescribed medication it will take for me to get to sleep. Most of my prescriptions read "as needed", so every night its an experiment to find the Goldielocks dosage for the night. I am trying to get by on the least amount necessary but this also results in me starting off with say 50% of my daily allotment at bed time and then adding another pill an hour later and maybe another an hour later etc. So some times I don't get to sleep until 2 or 3 or 4 am. Also sometimes I have to sleep on the couch so I can sleep on my stomach to get my back in a counter stretch.

Once I do get to sleep If I don't have my alarms set and even some times even when I do have my alarms on I can end up sleeping 10-18 hours. Oh I also have sleep apnea so thats another reason I worry about overdoing in my sleep. I have a Constant Pressure Aspiration Pump. But I have never been able to get to the point where I wake up with it still on my head the nest morning... At some point in my sleeping state I take it off. Also, I can't wear it while sleeping on my stomach.

Speaking of removing the CPAP in my sleep, another result of the sleep apnea is I have developed over the years a high level functionality nacrolepsy. I can have full conversations, navigate my bedroom to turn off alarm clocks.... all of which is very freaky for my family and my girlfriend. Before I was prescribed the Adderall I even had narcoleptic episodes at work where I answered technical support calls and resolved the problem the customer was having with their computer while fully asleep. That really freaked out my co-workers.

So my sleep is sporadic, erratic and yet it also seems to be curative. I'm sure a lot of people in this forum can relate to this next part... Beyond the work out of back spasms or physical therapy, just enduring the pain is physically exhausting. Even when I was working 40 hours a week with a 5 hour daily commute by public transportation, since I can't drive with levels of opiates I am taking, I would get up at 4:30 am shower, shave, dress... sleep an hour on the initial 90 min bus ride then grab coffee and make 2 more transfers to get to work at 8 am. Then I would get off work at 5, take another hour catnap on the 2 1/2 hour commute home and usually skip dinner, opting to head straight to bed when I got home at 7:30 pm.

That's the most frustrating part... I'm not fully disabled, but I definitely have a disability. So I am constantly battling to be a contributing member of society, but to do so I require accommodations for my disabllity. Right now I am struggling to get an exception from my state Department of Transportation for a handicap permit to take my powered assisted bicycle on the buses. I am also trying to get a Workforce Services intermediary to assist me in getting a job.

I don't want to resign myself to living off SSI and getting around in a power chair, but because it makes their jobs harder the social/public workers would rather pidgeon hole me in a slot that has policies already in place, instead of allowing me to be a contributing member of society!?!

My apologies for the rambling rant... its just so frustrating sometimes....

 
Old 01-04-2010, 11:22 AM   #13
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Re: Searching for a way off the meds

Quote:
Originally Posted by Myofascial Pain View Post
First it was misdiagnosed as a bulging disc.. after I went to a pain treatment clinic they informed me that about 60% of people have some slight malformation of the spine and my condition was caused by the fascia (connective tissue) of my muscles (myo) being torn...
Myofascial Pain, well maybe you don't need sleeping pills but your sleep is not normal that's for sure. Did this car accident cause you sleep apnea?.

Can you please explain me what exactly they've told you over there in the pain management about this 60% of people...how they got this number?
also what happened to you, did you have a whiplash?. reading your post I believe I also had this torn muscles? but why it never get back to what it used to be? I mean, howcome we are not what we used to be(mine is the neck yours is the back) and did you know, some people it gets back to what it used to be more or less. not me.

Last edited by nochange; 01-04-2010 at 11:24 AM.

 
Old 01-05-2010, 09:56 PM   #14
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Re: Searching for a way off the meds

Quote:
Originally Posted by nochange View Post
Myofascial Pain, well maybe you don't need sleeping pills but your sleep is not normal that's for sure. Did this car accident cause you sleep apnea?.

Can you please explain me what exactly they've told you over there in the pain management about this 60% of people...how they got this number?
also what happened to you, did you have a whiplash?. reading your post I believe I also had this torn muscles? but why it never get back to what it used to be? I mean, how come we are not what we used to be(mine is the neck yours is the back) and did you know, some people it gets back to what it used to be more or less. not me.
The apnea is genetic... recessed jaw causes soft palette to close more easily causing snoring and rarely stoppage of breathing...

Its not so much the muscle but the connective tissue surrounding the muscle that is damaged.. why isn't it healing? Not sure but it could have some thing to do with constant muscle spasms and the muscle never untensing enough to heal.

Sadly with a back you can't baby it like you can with an appendage..
You can't totally numb it because you need your intercostal muscles to breathe...

I am guessing that my back never untensing it's always trying to compensate the orientation of my torso to reduce the pain.. Thats why when they did a basal nerve branch block of just the lower right quadrant of my back, the muscle in my other 3 quadrants freaked out trying to compensate..

Thats the reason I only do basal nerve blocks in a minimum of 2 quadrants at a time based on that horrible experience..

So I'm only guessing but I think its the fact that my back never relaxes... my pain level is typically a 6 but never less than a 2.. is the reason my back isn't healing like a typical sprain or strain... or it could be the fact that its the fascia thats damaged instead of the muscle... I wish I had the answers.. then maybe we could find a way to fix my condition Right now its all guess work as far as procedures go....

Last edited by Myofascial Pain; 01-05-2010 at 10:02 PM. Reason: Typos

 
Old 01-06-2010, 03:16 AM   #15
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Re: Searching for a way off the meds

Myfasctial, I believe neck pain is worst than back pain. what do you think?. with neck pain Physical therapist cannot do anything. At least with BACK pain you said your Physical therapist can help you some. Strange, this woman was so mean to me right from the start, she said there is nothing she could to do ease the pain in my neck but I told her my primary care doctor sent me to her and she needs to do her job.

In fact, you sound luckier than me. I'm not sure, but I would rather have back pain than neck pain, perhaps. also since the accident I've developed TMJ exactly where my neck hurt in the same side. doctor said it's not from the accident but it's probably triggered it.
also I did the mistake of going for 12 session for a chiropractor cause was depressed after the accident when the doctor told me I will suffer till the rest of my life and the chiropractor told me I will get better. ya right. he possibly made my neck worst.

it's too late now. the only thing left to do is taking pain meds and accepting this chronic pain issue cause when you have to you have to.
Also, I believe you can still sue those people who caused your injury eventhough they don't have insurance. What you need to check is if they have possession and if they don't have possessions perhaps their parents have. Somebody has to be held liable. you know?.

Last edited by nochange; 01-06-2010 at 03:18 AM.

 
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