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    Old 03-01-2009, 03:23 PM   #1
    robochick
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    Pain level scoring??

    hi, I've been attending a pain releif clinic for 10 years and never really been able to understand the pain level scoring thingie!!! I've never had anybody to ask and was too embarrassed to ask at the pain clinic, could any body please, please explain this too me?????? Also, how much is too much pain, what do you do when you have done everything to stop or manage your pain but it still persists!! my routine when my pain in extremly bad is, make sure am upto date with my buprenorphine patch, take extra pain killers , then I'll have a hot bath to try to relax my back muscles, then put my TENS machine on, then put my heat pad on, then I'll try my best to get as comfy as possible, try and control my breathing so I don't have a panic attack. What do other people do once they have done their pain releif routine?? I feel like am waiting for next christmas on boxing day, just sat or laid there waiting for the pain to subside!! Is there anything else that I can add to my routine for more pain releif??? Please Help xxxxxxxx

     
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    Old 03-01-2009, 03:40 PM   #2
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    Re: Pain level scoring??

    0 Pain Free No medication needed.
    1 Very minor annoyance - occasional minor twinges. No medication needed.
    2 Minor annoyance - occasional strong twinges. No medication needed.
    3 Annoying enough to be distracting. Mild painkillers are effective. (Aspirin, Ibuprofen.)
    4 Can be ignored if you are really involved in your work, but still distracting. Mild painkillers relieve pain for 3-4 hours.
    5 Can't be ignored for more than 30 minutes. Mild painkillers reduce pain for 3-4 hours.
    6 Can't be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, Vicodin) reduce pain for 3-4 hours.
    7 Makes it difficult to concentrate, interferes with sleep You can still function with effort. Stronger painkillers are only partially effective. Strongest painkillers relieve pain (Oxycontin, Morphine)
    8 Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain. Stronger painkillers are minimally effective. Strongest painkillers reduce pain for 3-4 hours.
    9 Unable to speak. Crying out or moaning uncontrollably - near delirium. Strongest painkillers are only partially effective.
    10 Unconscious. Pain makes you pass out. Strongest painkillers are only partially effective.
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    Old 03-01-2009, 04:58 PM   #3
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    Re: Pain level scoring??

    Funny you posted this because right now I am sitting here trying to distract myself from my own pain. I bet most people forget the pain levels and what it really means after having to deal for long periods - like you for 10 years. I only hope that by then I have more control of my own situation. I usually under value my pain because I am always reluctant to acknowledge it to myself like I am "givin in". In my PM they only use the happy face 1-10 scale so you don't have to read the words and admit how much you really hurt. If you actually look at the words I find myself having to admit the pain. My goal is to keep around 5's on average, on a rare lucky day I can get as low as 3, on bad days it can go in the 8-9s. Thankfully I haven't had any 10s for a while but did have 9 day on thursday. I find as I am in the 7's I tend to be crying (maybe that is like your "panic attack"), I looked at those statements from Pooby and the ones I was looking at were 7-8-9s. I never have complete "relief" and I am on fentanyl - what it does is bring it down to keep me in the 5s. I also am pretty reluctant to move up on nore patches and just try to manage - it is scary to me to think that tolerance keeps building and someday there might not be relief without being in a complete haze. So I would rather manage it with the lowest amount I can get by with for now. I think that is a PM goal anyway is not to be 0 but to at least cut pain in half.

    One thing I found useful is guided imagery with the pain psychologist - I learned it myself, but I think I need to go in for a touch up on the skills. If you haven't tried this you might! I do everything you say, and have burned out so many heating pads - I own stock in the company - try distracting things like music - or computer - or whatever is your thing. When all else fails, I just try to go to sleep for a nap and see if I wake up feeling better.

    There are people that get pain pump implanted and that works for many - have you looked into that as well as the scs?

     
    Old 03-01-2009, 06:48 PM   #4
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    Re: Pain level scoring??

    That is depressing. I just realized I never get below a 6, and spend a lot of time in the 7,8,9 range.

    My new routine to manage my pain is to take my medication on a regular schedule. Keeping on a schedule with these things helps a lot. I also spend a lot of time on my ice pack. Deep breathing helps a lot, because once I start moaning and crying my muscles tense up which makes it worse. Try playing some relaxing music. Do you have one of those clocks that plays nature sounds? That helps me relax.

    I am sorry you are in so much pain. It is really terrible to have to live like this.

    Last edited by megss; 03-01-2009 at 08:03 PM.

     
    Old 03-01-2009, 06:49 PM   #5
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    Re: Pain level scoring??

    I am a big fan of finding a therapist who deals with chronic pain. They can teach you all sorts of emotional coping skills as well as how to manage your family, friends and work. And it's helpful if you are applying for SSDI.

    As for the pain scale, I have my own scale. I had both knees replaced at the same time. The post-op pain is excruciating to say the least and it took me all evening to ge tto sleep after 8 hours in the OR. So what happens? The nursing staff wakes me up at midnight to clean me up. They had been too busy all evening. Well, I had maxed out my PCA already and they couldn't give me anything extra so I ended up with massive breakthrough pain. They paged the pain doc on call for 3 hours....she had turned off her pager to get some sleep. I was sobbing and near delium from the pain. My ortho had warned me he had seen people have psychotic breaks from the pain so he was "making sure" I was well medicated. He didn't count on stupid nurses and a lazy pain doc.

    They finally got the okay to inject Fentanyl directly into my spine and only after a second injection could I rest. The next day they changed the PCA mix to a higher percentage of marcaine with the Fentanyl.

    That became my "10". So now everything is relative to the night I had to put up with the post-op pain of 2 TKR's and no pain meds. Doubt I'll ever hit a 10 again(I hope).

    gentle hugs...............Jenny

     
    Old 03-01-2009, 08:41 PM   #6
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    Re: Pain level scoring??

    robochik - I am so sorry that you can't get it in reasonable control. It sounds like you use good techniques . I also do it by not working - thankfully I was in a position to retire, very closely monitoring activity, resting alternating days and some days not going through the whole process of doing hair etc., and kids are grown so that strain is gone. If I didn't do all these life changes I would be a wreck. Do you work - or do you have lots of responsibilities that you take care of daily? Plus weather is a big deal - you don't live in as good as weather as I do and I suffer on the bad days - does that influence how you feel?

    Do you have a good support system in home or family? Where they help extra on your worst days?

    What jenny said about the fentanyl directly in spine - I had that too on one of my recent epidurals. I think that is what it would be like with a pain pump robochik - maybe you should also investigate that piece in case you need to go that route in future. I recently met a woman who has a scs and pain pump.

    Jenny that sounds painful oweee and Megs hopefully after your upcoming surgery you will get in better control.

    Take care - and hoping tomorrow will be a good day.

     
    Old 03-02-2009, 12:38 AM   #7
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    Re: Pain level scoring??

    Oh robochick, I'm so sorry that things are so grim - I wish you could come and see my pm cause I think we both suffer mostly with nerve pain? If your pain is over a 6 (well, my 6 which is like I'm unable to connect cause my pain is so sharp) then perhaps norspan just isn't the stuff for you? I personally found it useless 4 nerve pain, the only thing that was good about it was you only had to change it once a week. How do you find the patches? They ended up giving me scars. Do you feel they're working as well as what you were taking before? Are you taking neurontin or elavil or something to modulate the pain? It sounds like some xanax or propanalol (I use this all the time when I'm about to freak cause my pain is so sharp, it's brilliant and non addictive).

    Visualisation helps a little. Heat helps me whereas cold makes me worse. One thing that I find great with panic is word categories - pick a category (eg girls names) then come up with one for each letter of the alphabet, my partner helps when I'n bad and it definitely grounds me. My psychologists latest suggestion was playstation to distact me for short periods. I can't work anymore so this sort of thing helps - just don't forget to move around or you'll end up feeling worse oh, and baths are great - but sometimes too much effort.

    Keep in touch

     
    Old 03-02-2009, 01:46 PM   #8
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    Quote:
    Originally Posted by pooby View Post
    0 Pain Free No medication needed.
    1 Very minor annoyance - occasional minor twinges. No medication needed.
    2 Minor annoyance - occasional strong twinges. No medication needed.
    3 Annoying enough to be distracting. Mild painkillers are effective. (Aspirin, Ibuprofen.)
    4 Can be ignored if you are really involved in your work, but still distracting. Mild painkillers relieve pain for 3-4 hours.
    5 Can't be ignored for more than 30 minutes. Mild painkillers reduce pain for 3-4 hours.
    6 Can't be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, Vicodin) reduce pain for 3-4 hours.
    7 Makes it difficult to concentrate, interferes with sleep You can still function with effort. Stronger painkillers are only partially effective. Strongest painkillers relieve pain (Oxycontin, Morphine)
    8 Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain. Stronger painkillers are minimally effective. Strongest painkillers reduce pain for 3-4 hours.
    9 Unable to speak. Crying out or moaning uncontrollably - near delirium. Strongest painkillers are only partially effective.
    10 Unconscious. Pain makes you pass out. Strongest painkillers are only partially effective.
    Thank you ssssoooooo much for that information about the pain level scoring, its really helped, thank you and take care x

     
    Old 03-02-2009, 02:11 PM   #9
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    Re: Pain level scoring??

    Quote:
    Originally Posted by Juliet31 View Post
    Oh robochick, I'm so sorry that things are so grim - I wish you could come and see my pm cause I think we both suffer mostly with nerve pain? If your pain is over a 6 (well, my 6 which is like I'm unable to connect cause my pain is so sharp) then perhaps norspan just isn't the stuff for you? I personally found it useless 4 nerve pain, the only thing that was good about it was you only had to change it once a week. How do you find the patches? They ended up giving me scars. Do you feel they're working as well as what you were taking before? Are you taking neurontin or elavil or something to modulate the pain? It sounds like some xanax or propanalol (I use this all the time when I'm about to freak cause my pain is so sharp, it's brilliant and non addictive).

    Visualisation helps a little. Heat helps me whereas cold makes me worse. One thing that I find great with panic is word categories - pick a category (eg girls names) then come up with one for each letter of the alphabet, my partner helps when I'n bad and it definitely grounds me. My psychologists latest suggestion was playstation to distact me for short periods. I can't work anymore so this sort of thing helps - just don't forget to move around or you'll end up feeling worse oh, and baths are great - but sometimes too much effort.

    Keep in touch
    Hi there, my pain management doctor hasn't been able to find out where my pain is coming from or what is causing it, my history is that I broke my back 10 years ago in a car crash and have suffered from chronic pain ever since, I've had x-rays, MRI scans but still they can't find whats causing my pain, is the norspan patches the same as buprenorphine?? I'm using 35mg buprenorphine patchs at the moment and they definatly arn't helping with my pain, my pain seems to be much worse since I had a trial of the scs. (not sure if that can happen or if its just stress making my back worse??) I'm the same as you with the patches, I've got squares left all over my back from the patches (I look like a human chess board, hehehe), my pm dr has told me to keep on the buprenorphine patches and just top up with paracetomol when I need it, (which is almost every day/all day), I'm also using propranolol, I take 3 per day, and I'm not sure if they are working because I've been on them for so long, I don't have as many panic attacks as I used to do so I suppose they are working really, I also have a visulisation of lieing on a bed of feathers on a beach in thailand, and I can hear the sound of the waves splashing onto the sand, the sun in so warm and feels fantastic on my back then I get up and go for a nice breif walk and the sunnys warming my back and it feels so fantastic, I can feel it warming my bones up from the inside, but when my pain gets really bad I can't think straight or concentrate on anything, but I will try harder, heat to me is a absolute godsend, I have an electric blanket on my bed and a electric heat pad on my sofa and have fleece blankets all over the house to keep my back warm, and the cold just makes me shiver just typing the word and absolutly kills my back, especially the cold weather, I like the sound of the word categories method, I think I will try that, I do have a DS lite which i'm never off, when my pain is really bad I find it hard to move my arms because my pain travels down my arms and legs, but I find it does help to keep my mind occupied but not when my pain gets very bad, and baths, your right are fantastic but sometimes its far too much effort, are the norspan patches the same as the buprenorphine patches, or is it the same product but with different names, i few people on this site have recommended the norspan patches and the fentlyn patches as well, do you know anything about those patches.
    Thank you so much for your reply, I hope your pain isn't too bad today, take care xx

     
    Old 03-02-2009, 02:49 PM   #10
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    Re: Pain level scoring??

    Quote:
    Originally Posted by neckpatient View Post
    robochik - I am so sorry that you can't get it in reasonable control. It sounds like you use good techniques . I also do it by not working - thankfully I was in a position to retire, very closely monitoring activity, resting alternating days and some days not going through the whole process of doing hair etc., and kids are grown so that strain is gone. If I didn't do all these life changes I would be a wreck. Do you work - or do you have lots of responsibilities that you take care of daily? Plus weather is a big deal - you don't live in as good as weather as I do and I suffer on the bad days - does that influence how you feel?

    Do you have a good support system in home or family? Where they help extra on your worst days?

    What jenny said about the fentanyl directly in spine - I had that too on one of my recent epidurals. I think that is what it would be like with a pain pump robochik - maybe you should also investigate that piece in case you need to go that route in future. I recently met a woman who has a scs and pain pump.

    Jenny that sounds painful oweee and Megs hopefully after your upcoming surgery you will get in better control.

    Take care - and hoping tomorrow will be a good day.

    Hi there,
    When I broke my back I didnt' work for years because of the pain and then went back to work about 2 and half years ago, I set up my own business doing beauty therapy so that I could be my own boss, I gave up work again in Sept 08 because I was having the trial of the scs implant surgury done, when I only had the trial wire in for 2 weeks before they took it out because there was a slight reddening near the exit wire wound and they thought it was an allergy to the wire but it turned out not too be and they put the electrode on my spine in the wrong place so I could only feel the stimulation in my leg and not in my back where I need it. I hope to go back to work and set my business up again once I have had my next scs trial which is schudule for the beginning of april 09 or when I finally find some effective pain releif. I don't have any children due to the fear of having children will make my back worse, and don't know if I could cope with a pain increase of picking up the child and carrying it around and careing for it, so I don't really have many responsibilitys just a boyfriend and two tiny little dogs which are my babies. The weather is terrible over here and has a very bad effect on my back pain, especially the rain, I think I need to move to a warmer country. I only have my boyfriend for support as my family seem to have forgotten that I broke my back and well they just ignore it, my mum calls me a mard arse when I complain so I don't bother telling them I'm in pain I just avoid them or make up other excuses, which is a big stress, because there help every now and again would be fantastic espaically when I had the trial scs, my boyfriend had to work full time then come home and get me showered and change my dressings which took at least an hour, then get me dressed, make my tea, then get himself showered, it was a very hard time for us both and very frustrating for me, seeing my partner have to do everything for me and my family choose just to ignore my kind of disability, I think that is why I now spend sssoooooo much time on this site because I've never had any body to ask questions and get advice from, when I told my mum I was going to the pain clinc 3 weeks ago to get a higher dose of my buprenorphine patch she just laughed and said I'd never get it & that she was getting back in bed because she had a cold, so I think I would say I don't get much help and support apart from my partner, any way enough of my moaning! The pain clinc have told me that they won't increase my 35mg of buprenorphine so I intend to ring them and ask them if I could try the fentanyl or norspan, perhaps the same dose of something else might help, which quite a few people from this site have suggested that I try. I was also wondering if after having my scs fitted, that if it doesn't work enough for the 2nd time, if it was possible to have a scs and a pain pump working together and I guess you just answered my question, I've been doing some research on the pain pump just in case my next scs doesn't work, so at least its another option to perhaps explore or talk to my pm dr about. Thank you so much for reading and for your reply, it means so much to have people here in simular situations, thank you, I hope your pain isn't too bad and take care xx

     
    Old 03-02-2009, 02:50 PM   #11
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    Re: Pain level scoring??

    Hey Robochick,

    Yep, norspan is burpenophine. Yucky stuff. It just did not work for me at all and the patches were awful. Fentanyl is a different kettle of fish all together. Fetanyl is considered to be the strongest (dose for dose) med out there. I haven't tried the patches but it works awesomely well in hospital. I'd give bupe a 2/10 and fentnyl a 9/10. It also has less side effects for me. We're all different but you could try telling ur dr that norspan isn't working, ur almost bedridden and is there a different type of patch you could use? That's prob how I'd approach it anyway.

    I feel for you, mate, let me know how you go, ok? You do deserve some quality of life and ur doing everything right non-medication wise. Best of luck ps: I'm ok today though really tired, my dog and I r just going to have our morning rest

     
    Old 03-04-2009, 08:07 AM   #12
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    Re: Pain level scoring??

    Quote:
    Originally Posted by Juliet31 View Post
    Hey Robochick,

    Yep, norspan is burpenophine. Yucky stuff. It just did not work for me at all and the patches were awful. Fentanyl is a different kettle of fish all together. Fetanyl is considered to be the strongest (dose for dose) med out there. I haven't tried the patches but it works awesomely well in hospital. I'd give bupe a 2/10 and fentnyl a 9/10. It also has less side effects for me. We're all different but you could try telling ur dr that norspan isn't working, ur almost bedridden and is there a different type of patch you could use? That's prob how I'd approach it anyway.

    I feel for you, mate, let me know how you go, ok? You do deserve some quality of life and ur doing everything right non-medication wise. Best of luck ps: I'm ok today though really tired, my dog and I r just going to have our morning rest
    Hi ya,
    I've done my research on the internet and have found that more people have much better releif with the fentnyl than the bup, so I've just left a message at the pain releif clinic and asked if I could give the fentnyl as go, as I'm getting very little releif with the bup, since my scs trial sugurgy in sept I've noticed a few differences in my pain and stiffness in my legs when I'm trying to get up from siting down, I now have to use my walking stick and the arm of the chair to get up, which I didn't need to do before the trial, and my day to day pain has come more persistant, and my usual pain releif routine isn't helping as much as it used to do, I'm really embarrassed to go out the house, because I struggle so much to get up, I feel at least 120 years old and I'm only 29, do you know if its possible for pain changes to happen after having an operation, am quite worried about what my pain will be like after my next scs trial, if there has already been an increase in my pain after the 1st trial.
    Hope you and your dog had a nice morning nap and hope your not in too much pain today, take care xx

     
    Old 03-05-2009, 06:16 AM   #13
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    Re: Pain level scoring??

    Hey robochick, how's things today? I've definitely heard of pain from scs trials - I guss it stands to reason if they have to poke around to get the right coverage. To be honest, the only reason I'm entertaining the idea is because it makes my pm happy - I'm terrified of having leads put in my spine, especially before I have kids. It's not really advised but the pms seem to push it anyway. Is your pm going to admit you to hospital for a few days during the trial? Mine did say he would do thisin case of a nerve pain flare up. This guy isdifferent from my usual pm though, and I don't really trust him to treat my pain properly. Oh well. Have you heard back from your doctor yet? I hope it's positive, you definitely need more relief. Take care

     
    Old 03-06-2009, 11:07 AM   #14
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    Quote:
    Originally Posted by Juliet31 View Post
    Hey robochick, how's things today? I've definitely heard of pain from scs trials - I guss it stands to reason if they have to poke around to get the right coverage. To be honest, the only reason I'm entertaining the idea is because it makes my pm happy - I'm terrified of having leads put in my spine, especially before I have kids. It's not really advised but the pms seem to push it anyway. Is your pm going to admit you to hospital for a few days during the trial? Mine did say he would do thisin case of a nerve pain flare up. This guy isdifferent from my usual pm though, and I don't really trust him to treat my pain properly. Oh well. Have you heard back from your doctor yet? I hope it's positive, you definitely need more relief. Take care
    Hi ya,
    When I had my last scs trial I was only in for the day, I went in at 7.30am and was at home by 5.30, but I have heard of people staying in overnight or for a few days, depending on your type of pain. How come you don't trust this pm dr to manage your pain properly, have you only just started seeing him?? I rung the pain clinic on wednesday to ask I if could give the fentlyn patches a try and she said that she would ring me back on thursday afternoon, but she didn't get back to me, so I rung her again today and she's on holiday until monday, I'm furious, they're supposed to be a pain releif clinic and all my pain releif clinic is giving me is more stress and back pain, stress inducing clinic more like. All I want is some decent pain releif (that is what they are paid to do) and a date for my next scs trial. The last time I saw my pm dr was in Nov and he said that I would be treated as a priority on the waiting list for my next scs because I've already had it before and he put the electrode on my spine in the wrong place, so I had to have it taken out, so I asked him if I could have it done before christmas & he said he was fully booked up already and that the next dates avalible are for the beginning of Jan, then they told me it would be end of feb, then end of march, then beginning of april, but I still don't have a date and I won't be at the beginning of April because they give you 6 weeks notice before your surgury and I havn't got it yet so it's going back again to April and they won't give me any thing to control my pain, not even just untill my surgury, sorry I'm ranting, it's really getting to me and the stress is making my back worse and the pm dr doesn't seem interested in managing my pain and I'm finding it hard to cope with at the moment, it's all I can think about.

    Sorry for ranting, am very frustrated, I hope your pain isn't too bad today and hope your feeling OK, take care xxx

     
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