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Old 05-21-2011, 09:18 PM   #1
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Unhappy Help needed...desperate mum

My very active 12 year old sprained her ankle..no biggie really.
However it has resulted in severe pin like feeling in her foot, the foot is often very cold yet swollen. it has discoloured on the bottom, she is not able to walk un aided, so she is on crutches.
we went to the hospital on Friday and they x rayed her..no break.
They diagnosed her with reflex sympathetic dystrophy and sent me home to google it.

I am in utter shock!!!!

She has been training for the worlds team for Tae Kwon do, she has amazing goals in life, she skateboards and surfs like a pro.

Now what do I do????

I am her mum, I am scared.

We are fortunate by the sounds of some stories, as she has a diagnoses only 5 weeks into the pain.

What do I need to ask the specialist? What do need to push for? Are there any excellent outcomes?

Please help me to understand :-(

 
Old 05-22-2011, 11:29 AM   #2
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Re: Help needed...desperate mum

[QUOTE=Pip12;4760088]My very active 12 year old sprained her ankle..no biggie really.
However it has resulted in severe pin like feeling in her foot, the foot is often very cold yet swollen. it has discoloured on the bottom, she is not able to walk un aided, so she is on crutches.
we went to the hospital on Friday and they x rayed her..no break.
They diagnosed her with reflex sympathetic dystrophy and sent me home to google it.

I am in utter shock!!!!

She has been training for the worlds team for Tae Kwon do, she has amazing goals in life, she skateboards and surfs like a pro.

Now what do I do????

I am her mum, I am scared.

We are fortunate by the sounds of some stories, as she has a diagnoses only 5 weeks into the pain.

What do I need to ask the specialist? What do need to push for? Are there any excellent outcomes?

Please help me to understand :-([/QUOTE]

Tomorrow take her to a physiotherapist and have her treated, the longer you leave it the more chronic it will become
James.
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Old 05-22-2011, 03:08 PM   #3
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Re: Help needed...desperate mum

we are at specialist today...I am asking for MRI and referal to pain clinic and Physio.

Anything else I can do?

 
Old 05-22-2011, 03:44 PM   #4
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Re: Help needed...desperate mum

[QUOTE=Pip12;4760603]we are at specialist today...I am asking for MRI and referal to pain clinic and Physio.

Anything else I can do?[/QUOTE]

The specialist will let you know whether she truly has RSD or a sprained ankle. The discoloration in the foot would suggest she has bled a bit from the capsule of the joint but that is not neccissarily bad. On the other hand discoloration can show with RSD. A sprained ankle should be immobilized as soon as possible after an inury to reduce the swelling and thus really speed up healing. No one seems to know why a child gets RSD and upsets the nerves. I wonder how the diagnosis could be made as early as five weeks? usually it takes longer to make this decision. We can only hope that it is only a sprain, RSD can be a long term condition and if she does have it, it was found early.
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Old 05-25-2011, 08:35 AM   #5
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Re: Help needed...desperate mum

sorry, did not actually read about you already being at pain clinic(great!) til i got done and reread some stuff. now, ask for the following block.

my BEST possible advice as one who has RSD in my R knee on down thru my foot since 2003? get her in for what is called a 'sympathetic nerve block'(it is done in the low back right into the sympathetic chain/ganglion to block all symp signals from entering that leg for about 6 hours). this, in most cases would be able to differentiate just a 'plain' long healing sprain with some 'nerve" involvement from actual sympathetically generated RSD.

after this particular block is injected, and all symp nerve signals are blocked from even going into that leg, she will be asked to gage her pain on a sheet they will give her over like the next six hours or so. the real 'key' here is if her pain actually goes away or changes at all with this block, if the pain gets better, then it is assumed it IS at least some level of symp generated pain. if not, while there is a small chance it still 'could' possibly be(unfortuently nothing IS 100% dead on perfect when it comes to actually dxing this crap), the chances are much less and it is merely some other type of pain issue from possible soft tissue/nerve and possible vascular damage(the vasc is only becasue of the color and temp change involved). but this IS unfortuently about the closest thing they ahve so far that at least CAN help in differantiating another pain process/damage from RSD. the bloodflow too should flush back into that leg to foot after that block is done as well. sometimes it may stay(esp if early onset is intervened with this block) and sometimes, once that six hours is up, it could come back. but this definitely IS something that needs to be done for her as soon as her doc can refer her to an anesthesiologist who simply does these types of blocks. most pain clinics do these. this is where i get mine done.

this type of block is used not only to help try and Dx RSD or symp generated pain processes, but it ALSO can help alot with pain and normalizing of the bloodflow back into that foot too. the earlier in the 'onset process" this particular block gets done when this IS indeed RSD, the better chance of actually creating the possible remitting of it in some cases before all the different "stages' set in too. sometimes it does take a series of like 2 or three? but this seriously needs to be done asap. too many people end up with the more impactful and life altering consequences of this RSD hell simply becasue the Dx was not made early enough and esp no symp blocks ever given then either. if this were my child, i would seek out this block and then go from there depending upon what does or does not occur.

right now i would speak to her primary doc about setting up that sympathetic nerve block somewhere. there are different places that do these and other types of injections too that he should know about. but just incase her ped/doc does not know where to send her, he should know about what actual good pain clinics are availiable who simply do the standard pain injections since they DO refer patients to them pretty regularly from almost any clinic. and just about any good pain clinics do these on VERY regular basis too. so they DO have alot of real hands on experience with them and what to look for with the changes as well. i truely DO hope that she does not have RSD. just DO try and get at least this one block done and see what comes out of it.

just so you know, all of our bloodflow is dictated and governed at the sympathetic level. the dilation and constriction of all blood vessels. so no matter what, unless those vessels themselves are damaged to the point of NO actual bloodflow, during the block, she should get whats called an "arterial flush" whether this is or is not symp generated, just becasue that stimulates it? its the other 'changes" esp pain that would indicate morseo RSD is possibly present.

believe it or not, there are actually people out there who ended up with RSD ONLY from a seriously botched blood draw or IV insertion. damaging blood vessels or the symp nervous system directly in certain ways like mine was(spinal cord), can trigger all kinds of problems. please do let us know what you find out and how things go,K? i WILL be praying she does NOT have RSD. good luck pip. marcia
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Old 05-25-2011, 09:49 PM   #6
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Re: Help needed...desperate mum

Pip,
Get her in with a anesthesiologist /Pain management doctor in the biggest city near you, as quickly as you can. The sooner, the better the outcome for you and for her. Check with the biggest teaching hospitals around you for a PM doctor/anesthesiologist who is well versed in treating RSD. You don't want to mess around with someone with little to no experience treating this condition because it can get worse and it can spread through out the body if not treated properly. The longer RSD /CRPS ( reflex sympathetic dystrophy or as it is more commonly known now- Chronic Regional Pain Syndrome) is treated aggressively, the more likely that it can be stopped completely or at the least managed so that she doesn't suffer life long.
I developed RSD in my right shoulder after a surgery- it spread to my arm, forearm and hand , and ultimately my fingers . I had severe atrophy throughout my collar bone area, the entire shoulder , upper back muscles, and limb.
You have to push her to actively participate in physical therapy, occupational therapy and to make her push herself to wear socks, shoes, put her foot on the floor, try to put it in contact with the floor, so that it doesn't become so sensitized , that you can't do any of those things.....and it will be miserable for her to go through this, and for you as her parent to watch her, but stick with it, because it is the only thing, along with proper treatment that is going to help her get rid of this or at the least minimize the extent of it.
There are blocks that can be done by a pain management doctor to stop the signals being sent from her foot to her brain, that can help to shut off the sympathetic nervous system and disrupt the constant flow of signals of pain.......they may have to be repeated over and over but that , along with other treatment options, PT, excercises and therapy is the only thing going to help her.
Hang in there,
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Old 05-25-2011, 10:31 PM   #7
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Re: Help needed...desperate mum

Has the diagnosis been made by someone who knows what is going on yet?
James

 
Old 05-26-2011, 12:09 AM   #8
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Re: Help needed...desperate mum

she has been diagnosed by two specialists now. We have a 3 week wait for the pain specialist and have been referd to the childrens hopsital pain people, this is all with private medical insurance, all we can do now is wait.
I feel so bad nagging her all the time to get her foot into a sock, or put it on the floor, even gently. She cries. Today she wore a sock and slipper for school, but took them off again.
I know its hard on her, but its hard watching it too.
I feel so bad for you all with this pain, and appreciate so much that you are all willing to share and care.

 
Old 05-26-2011, 08:35 AM   #9
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Re: Help needed...desperate mum

i really am so sorry that your child has to deal with this and you also have to watch it. as a mom, just seeing our children truely suffer thru something is like nothing i could have been prepared for when my son had his very sudden and suprise liver failure/transplant. it IS absolutely agonizing as a parent too. i am sooo hoping that they will do that symp block on her as soon as they possibly can. if this has not yet fully set in and she has not yet passed thru certain stages, it can help soo much with the pain of this hell and possibly remitting most of the syndrome. and doing the repated blocks DO seem to do better with most patients overall. just seeing how she responds to the block will tell alot.

what i am wondering at THIS point is, what exactly are they doing for her pain right now? have they started her on anything yet at all? while narcotics historically will not do to well for symp pain(i do get some level pain relief on a good day,its just no where near what i hoped from them), they DO also have a purpose in helping to disassociate the person from the pain. its part of what they just 'do' in our brains/mode of action. there is also the anti siezure meds that work on pain by calming down the inflammatory nerve responses that are not 'normal' that can possibly help too. i personally had really good luck with the med lyrica on both my RSD and another nasty pain syndrome called central pain syn too. unfortuently, i had some rather odd side effects and had to go off, but that drug has been the ONLY one out of sooo many others i have tried over years that even came close to touching the levels and types of pain processes i have. but eveyone IS very different in how any given med will work for them, so this one IS a good possible. i just don't know if there is an age limit? certain meds simply cannot be used on children since most of them have never trialed them on children. but narcotics if absolutely needed most certainly can be. if there IS anything that a good doc can even just 'do' for any patient, including a child who is suffering, there is NO EXCUSE not to. no one should have to go without 'appropriate' pain control for levels of pain they are suffering.

but topicals can really also help alot depending upon what is being used and where the pain is exactly. lidocaine patches are a REALLY good one. i use those alot and also an ointment form as well that you rub into the skin(both are the same 5% lidocaine). the lido could help her alot with pain control AND her PT just helping her to be able to even touch that floor with her foot and not feel that 'full' hit of pain, but a lessor type that is lessened by numbing it some first? while the patches do work better than the ointment only becasue they directly contact the skin and deliver it to it. they are not always easy to place around extremities. tho you CAN cut these particular patches to fit, or use ON the bottom of her foot for even enough time to numb it up well, take the patch off and begin her therepy as it wears off over time. its helping to go from desensitized(for HER comfort to start PT) into "sensitized" as it wears off, which is needed to help to try and desensitize her pain over time with repeated touch. and the ointment may help at least some in other areas, like her toes depending. even just taking the nasty edges off this level of pain IS something. if i can simply get any edges off any of my pain, thats a good day,and usually is for most chronic pain sufferers.

there is also another ointment called "prudoxin cream" that i used right after this central pain(it feels like a second degree burn that never heals) showed up post spinal cord surgery. this too is a good one for a topical. it did work rather well too, i just really do not totally understand the mode of action of it, but it was Rxed by my rehab physiatrist, and it helped. a TENS unit is also something i use specifically on my RSD knee esp for flares. this unit really helps tons in kind of distracting the the brain from the pain? this would be something that could help her. these are just some things i use that have helped me with my RSD and other pain processes i have. talking with her docs and mentioning at least the lido and the TENS unit really could help her alot right now as she is trying to deal with and live with this in her body.

when dealing with chronic pain and esp children, the less actual meds that have to be taken and given the better(certain types of meds really can and DO react differently in the still developing adolescent brain vs adult fully formed brain). i just have had some better luck with trying more of the topical approaches than dealing with some rather nasty side effects of taking certain meds. i just DO hope they are currently trying various things for her pain so she is not having to actually feel the fuller impact of RSD pain. if not, somone needs to be rxing something to at least try and help with that, ASAP.

i hope she is doing okay, and you too mum. just make certain that they are doing what they can NOW for her pain as much as possible and are NOT going to make her 'wait' til she can be seen to help with THIS level of pain she has. thats just soo not right if they are leaving her in this way. and you need to be demanding help if they are doing this to her. hopefully it IS being helped by something. take care, and DO please keep us all posted. marcia
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Old 05-26-2011, 03:40 PM   #10
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Re: Help needed...desperate mum

Thanks Marcia,
At the moment they have her on panadol and bioprophen(spelt wrong). We have just borrowed a TENS machine off a freind and have had the physio show us how to use it today. We cant get an appointment with pain people for 3 weeks, and we are waiting for the childrens hospital pain people to contact us, this may also take about 3 weeks.
I hate the waiting....
Its interesting about the topical creams you mention, I dont even know where I can get these, I wonder if the doctor knows.
She has just had the morning at physio, she is gentle with Niketa, but its hard to see her go through the most gentle of movements hurting her.
She is now at school, but it breaks my heart knowing she is in pain the whole time she is there.
She is so positive though, always saying "when my leg gets better I will......"
She is way stronger than me.
She is on school camp next week, dad is going with her. She is excited, ME..putting on a brave face, but wishing she was where I could keep an eye on her.
YOU have gone through some major things in life, and clearly still going through them.
I so wish I could find the happy story of recovery, I know they are out there...somewhere:-)

 
Old 05-27-2011, 07:34 AM   #11
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Re: Help needed...desperate mum

those stories ARE out there pip. alot of the people who have had good recoveries generally are not ON forums like these so you just don't hear about them as often, ya know? i really am shocked that her docs only have her on what sounds like tylenol and ibuprofen tho. i cannot imagine that combo, given the overall nature of THAT level of pain is realistically doing a whole lot in her situation to reduce her pain a whole lot. i WOULD call her docs that she HAS seen and ask about something a bit stronger til she CAN be seen at the pain clinic tho. one of her docs, esp her main primary 'should' already have been helping with this til the referred to appt is done(or whoever actually referred her is in charge of care), then her care would automatically transfer to the pain people. this IS just some really in depth and nasty pain to try and even get the edge off and there just is NO excuse for them NOT using the more 'appropriate" types of meds for HER actual pain levels here, no excuse.

but, on the 'good side' the one thing that IS really amazing about kids in situations like this pip, is they DO tend to stay more on the positive side and DO better overall for the most part, and for quite a few different reasons(in almost any given extreme or very painful medical situation, statistically, they simply DO so much better than adults). as long as YOU and and her dad, and everyone around her try and also stay positive thru this, she WILL tend to take her ques from mostly you two. and it sounds like she DOES have a great additude too, so keep encouraging that as well, K? children are simply way much more used to going thru ongoing changes in their lives when that young and DO conform/adapt much more easily to changes and develop their own forms of coping skills when forced to have to too. my son absolutly amazed me with his additude and always loved to try and make other people laugh while spending a huge amount of time being poked and proded and in pain and then a few months in the hospital too before/after his transplant. he was only 12 when he suddenly went into liver failure and we did not even know he was sick, and 13 at transplant. it was insane let me tell ya. but he just went with the flow and never laid there whining about his situation. we cried together only once during this part, and that was the day he was Dxed. after that we just kept moving forward, while at times taking more steps back and US as parents scared to death. but HE was the one that got me and my hubby thru this, and not the other way around, lol. i have never ever been prouder of that child as i was as he went thru that whole nightmare,and just handled everything the way he did. just try and keep as much positive energy around her, it REALLY does help.

the things i mentioned in that post are obtained only by Rx, so she will have to get these things thru her pain doc. but the lido, she could obtain thru her regular doc, or one that has already seen her. i would also ask her physio about lidocaine in PT and see what he or she thinks. it can help in many ways in either totally numbing particular areas, or leaving it on long enough to GET some 'numb' going, then remove patch from bottom of foot to start the therepy and she will then at least start feeling things a bit more slowly come back during the PT but she would at least be initiating it with some less pain and as it come back, as opposed to hitting PT cold, with no real help to try and take those edges off? its just a bit easier to take going into PT with what she is feeling with a more subtle approach vs the way she is probably doing now? at least at the beginning when everything new is simply much more impactful. just having used both forms of the lidocaine i mentioned in the other post for many years now on various areas of my levels of pain, i truely think it would be a huge help for her too. but there IS a time limit as far as like simply wearing one patch say like during the day of 12 hours, then it has to come off. but depending upon HOW it gets used, things may be a bit different, and also given her age. but i am a very tiny 5'2" woman who is also unfortunetly incapable, becasue of my own symp damage, of even gaining any weight anymore. my body is stuck in the "fight or flight" mode that is goverened as well by the symp system? so my metabolizm is wayyy hyper ever since my spinal cord was damaged. my weight went down between 96-92 lbs. it's like a yo-yo going up then down then back again. and i can wear two patches at a time on any given day. so depending upon her overall weight, that will also determine HER particular limits/doseage levels too.

i am really happy that you were able to obtain that TENS for her pip. mine has been amazing for when things really get out of control with my RSD. and it IS critical when using this to do exactly what you are doing in having a good experienced with the TENS PT person show exactly how to best use it for HER areas of pain as well. i usually use the pulsating/alternating current with mine and DO criss cross the electrodes so that signal is actually going THRU that most painful area of my knee which she can also do with her foot.

just one other thing i would VERY highly recommend that you just do right now, then keep doing for her, and for you too is obtain any and every single test result for your own files along with obtaining every single doc she sees clinic notes and other medical records too in an ongoing way. this IS a big part of her medical history that she will also need to fully know about at some point. so obtaining these records FOR her and keeping this all in some type of an expandable type folder just keeps everything in only one place too. this is what i did for my son and then for me when my crap hit the fan too. just having all this stuff obtained as you go along vs her trying to track down what could be some critical info way down the road that she may need, is sooo much easier to simply do for her now. the docs i see the most i will usually obtain records from like every six months or a year depending. but test results you CAN ask the ordering doc for a copy of them for her file you are keeping for her. this seriously DOES help you in alot of ways too pip, esp when a doc or someone asks you about a particular test or date of onset of a particular symptom or something else, you have it all in that folder that you can also bring to every doc visit. its just been extremely helpful for us in keeping up on all the tests and records.

but if your daughter is still truely suffering thru this with what they are only giving her right now, DO get on that phone and call her primary doc about 'helping' her pain til the pain clinic can take over her care. she just deserves "appropriate pain care for levles of pain" and to NOT have to suffer even more pain ONLY because no one wants to do it for her. it really IS cruel with this particular 'brand' of pain. hopefully her doc will rx something a bit stronger to help and i would ask about those lido patches and the ointment too. this stuff will help. just hang in there pip,and hopefully things WILL go well once she can get to the pain docs. but DO see what you can do for her NOW if at all possible. just never forget that YOU are her only true advocate. good luck, marcia
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Last edited by feelbad; 05-27-2011 at 07:38 AM.

 
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Old 05-27-2011, 05:16 PM   #12
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Re: Help needed...desperate mum

Hi, I have just posted on the stroke section on the "mirror box therapy" which may be suitable for sufferers of complex pain. Read it and see what you think.
James

 
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Old 05-28-2011, 02:04 AM   #13
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Re: Help needed...desperate mum

Thank you so much Marcia.
I will be calling the docs on Monday. It may sound like small stuff, but at the moment I have been ensuring she has a foot spa with epsom salts everyday, using the TENS machine, and keeping it warm.
When she has these, she tells me that it feels more relaxed when she is resting.
Today was a very good day, only a small thing, but she found a pair of shoes to wear..hahaha. I dont know if it was just the fact that it was a pair of funky high tops, and it made her determined to wear them no matter what, but for me it was great to see her bouncing around on ONE leg and crutches with a look at me i feel cool attitude.
YOU are so right about kids..her attitude is so positive.
Next week is going to be hard for me, she is away on school camp, she really didnt want to miss it, her dad is going with her, thank goodness. As I dont even want to think what I would have been like if he hadnt.
I am so fortunate to have found this message board. I want a magic wand for all of you.

 
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