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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

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    Old 09-30-2012, 07:01 AM   #1
    Izzabella
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    Unhappy Just wondering...

    Hello everyone.. I'm just wondering if anyone else experiences some of the symptoms I have that have gotten worse... First.. The cold weather.. Or even just air on my leg is intolerable.. I have to wear long pants day and night.. Of course the material of the pants has to be soft.. I have to keep my leg warm at all times.. I dread winter and summer is no better because of the air conditioning.. Does anyone else suffer more with the cold??

    Second.. Spontaneous outbreak of sweating especially at night.. But it's much different then when I went through the change these are cold sweats.. I will be sweating my pjs soaking but yet freezing!! I actually dread bedtime between insomnia plus the cold/sweats I'm up all night miserable.. Anyone else??

    And lastly.. Although we all suffer from so many horrible symptoms with RSD these are just a few and this last one is very sensitive to talk about.. My RSD affects my right leg especially the front of the thigh over the knee but it has spread to my pelvis/groin area.. The pain is so intense that sex is no longer a part of my life with my husband.. I also feel that I constantly have to urinate.. I've been tested for bladder/kindey infections and all is clear.. My dr feels its due to the damaged nerve since he's tested for other possible causes and all is fine.. RSD has taken away so much of my life.. Now intimacy with my husband is no longer a possibility.. My RSD was caused by a back surgery I had that was done by a dr that made a horrible mistake during surgery.. So his life goes on and I just don't even feel like a woman anymore.. Does anyone suffer from painful sex from RSD?? And if so any advice?? I just want to feel like a human being again.. A woman.. Even just a little bit..

     
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    Old 10-01-2012, 03:12 AM   #2
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    Thumbs up Re: Just wondering.....

    My husband and i will say a prayer for you right now Dear Jesus please help take the pain from Izzabella, My Husband and all the individuals who have pain in each and every single bone, joint, nerve and blood cell in their body. Jesus help us, and give us strength and hope for our life. Jesus comfort Izzabella and her husband and bless them with the intimacy they once had together and please help the pain to be transformed into a feeling that is filled with love and overall pleasure Amen
    from married couple to another good luck you have our prayers and our best thoughts.:an gel:

     
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    Old 10-03-2012, 04:20 PM   #3
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    Re: Just wondering...

    Hi Izzabell, sorry to hear that you're going thru theses problems. I too have a problem with constantly have to urinate especially at night. I have to limit how much I drink at night and what time or I'm up every hr on the hr going to the bathroom. I get very little sleep. The sex is not because I'm in pain but because I have lost all the feelings in my pelvic area from where my pelvis was cracked 30 yrs ago. I get so angry at times for all the things RSD has taken from me. The best thing and only thing that keeps me going everyday is to get up and see my two grandson's smiling faces.

     
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    Old 10-03-2012, 06:01 PM   #4
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    Re: Just wondering...

    I sooo appreciate the reply's.. No one could fully understand how horrible this condition from hell truly is.. I made it through a double radical mastectomy and although the treatments kicked my butt when it was over it was over.. Unlike RSD.. There is no end to this.. So yes anger is a part of the many emotions we all feel.. My situation makes me especially angry because it I got RSD from a mistake a surgeon made during a laser spine surgery.. And he is fine.. His life is wonderful!! So I say this again thank you for the reply's.. Many days I feel very alone in this until I come to this site!!

     
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    Old 10-05-2012, 09:57 AM   #5
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    Re: Just wondering...

    Hi, I have Centralized R.S.D. which is all 4 limbs and its centralized which means my central and sympathetic nervous system is completely compromised, which means my body can't keeps its temperature ever. My temperature changes so often its hard to keep track of. I too get the sensitive wind changes, weather changes, and sweat even when I am cold. I too have the bladder and bowl problems, if I don't pee before bed and limit what I drink I will pee the bed in the night, and I have completly lost the sensation to pee at all so I have to make myself pee or I get in pain when I have to go and then if I don't go right now I will pee my pants. My bowl I have a hard time pushing it out its a little hard to explain. I also have problems having sex with my husband but its the other way around, I can only have one position that doesn't hurt as much but he won't have sex with me because he can't get it up anymore cause I am not as active any more and he is scared of hurting me to I guess. My life has been stolen from me but part of me still thinks that once we get past some things that we can have a new different life. Please try and keep you chin up hun.... LittleLizzy

    Last edited by moderator2; 10-05-2012 at 10:06 AM.

     
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    Old 10-11-2012, 09:58 AM   #6
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    Re: Just wondering...

    This disease seems to take control over a lot of our body. I am always in more pain in the winter. The summer is warmer and is better for me. I use a tanning bed in the winter to try for a few minutes of warmth.
    Every year I get worse. My CRPS started in left leg. Since the surgeries for two implants I have pain in back and hips. This year I started having pain in my pelvis, out of the blue. I think it's hard to be intimate with our spouses because of pain everywhere else too. You are not alone.

     
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    Old 10-11-2012, 01:44 PM   #7
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    Unhappy Re: Just wondering...

    Quote:
    Originally Posted by MiaBelle View Post
    This disease seems to take control over a lot of our body. I am always in more pain in the winter. The summer is warmer and is better for me. I use a tanning bed in the winter to try for a few minutes of warmth.
    Every year I get worse. My CRPS started in left leg. Since the surgeries for two implants I have pain in back and hips. This year I started having pain in my pelvis, out of the blue. I think it's hard to be intimate with our spouses because of pain everywhere else too. You are not alone.
    It does take over a little more each day it seems, sigh. Winter and Summer are my worst months, winter is way too cold where I live and Summer is way too hot for me. Spring there is way too much rain so that leaves Fall where I can have a little break from weather changes. In the winter I use a heated blanket in bed and a smaller one for in the living room if I want to read or watch tv in there with the kids. They are great for when you are cold. I hardly go outside in the winter only if I have too. I am in a motorized wheel chair now from all the atrophy in my legs cause they are so bad. I can't walk too far anymore, cause I need to use cains and the cains hurt my arms which have R.S.D. in it too. It sucks being 34 and using a motorized wheel chair its sad very sad, I feel like a total idiot, but have no choice since my feet are so swollen and bad. I go through bouts of swelling like crazy swelling where my skin splits at my joints cause my skin just can't stretch anymore. My skin has become so tough that my sweat in my hands and feet can't come out anymore like normal it comes out in blisters, and there becomes so many that the whole surface of my hand or foot becomes moveable like there is a layer of water under your skin and if you pop one they all pop and all your skin comes off, so then you have to wrap up your hands or feet till they heal. I can't wear anything but cotton, soft cotton but not over soft either. I have to wear socks all the time cause even a small breeze hits them and I cry like I have lost a loved one, truly gut wrenching. Also socks creates a barrier in case I step on something. My feet swell all the time, constantly different sizes so I can only wear men's slippers the biggest they have, because they are usually the ones that fit when I go out. I have become so Depressed, the Specialists diagnosed me with Major Depressive Disorder, P.T.S.D., Bereavement (loss of oneself, loss of identity). I am now seeing a Psychologist every week so I can try to get out of this really bad funk I am in. Oh, and watch out for skin, hair and nail changes too. I have lost a lot of hair in places, gained some in others, my nails have striations on them and are very brittle and grow quite fast. I was recently in the Pain Program at St. Paul's Hospital for a few weeks testing out there Ketamine treatment, which works well to get some good physio therapy in while it doesn't hurt, anyways I suddenly became allergic to all adhesive tape, Band Aids, anything like that. By the time I left the hospital both my arms were burned to the last layer of my skin and that was within 24 hours of putting the tape on so they had to keep moving my IV and then they decided to put a PIC line in directly to my main vein and started out with a big type of square adhesive tape they put over IV's and they had to keep cutting it shorter and shorter, by the time I left hospital they had burned both my arms and both my ankles with adhesive tape or with diabetic socks which I suddenly found out that I am allergic to the latex and something else I can't remember at the moment and it burned right to the last layer of my skin before I noticed something was wrong cause I was so drugged up on all high doses of Ketamine, Morphine, Dilaudid, Gabapentin, Baclofen, Cymbalta, Domperidone, Cesamet (Pot Pill) that I didn't feel the extra pain I just thought it was the normal pain and the Ketamine wasn't working that great down there. Yeah, boy was I wrong. Its been 9 weeks now and I am still dealing with the burns. I look and feel like a mummy lol. And if you thought that was bad then, the burns got infected and sent some bad bacteria and parasites into my bloodstream and the parasites entered my digestive system and made it so I can't digest any food so its been something like 26 days now that I haven't been able to keep down or it goes straight through me and quickly too. So I have been pretty miserable lately until I found this site where I hope I can help some people, or maybe get some help for me too. Its sure nice to vent to someone even if you don't know if they will read it or not, even if one person reads this post then I will felt listened to and thats all I want, is for someone to listen and understand or try to understand what I am and others are going through, because at home, my friends (I only have one left now, and my physio therapist introduced us because he has RSD too lol, in my small Village of about 1000 people it was really rare to meet someone else who has it. All my other friends left as soon as they found out just how bad I was and I couldn't play sports with them anymore or party with them or go out on a whim with them or help them fix their computers or machines for them they had no use for me anymore.), the Community sure doesn't understand the general population as a whole don't know about RSD or CRPS which ever you like to call it. So one day attached at my door by someone (Who Knows) was a piece of paper with this site address and info about it. And said what the ^&%^ I would try it out.. I am glad I did this is the first time since I have had my disease where I can write about it, and be surrounded by people who understand and not be judged for how they feel or whats going on with them at that time. I've probably put you to sleep so I will stop here. Hope you all have a better day then yesterday.

     
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    Old 10-17-2012, 04:44 PM   #8
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    Re: Just wondering...

    I have been suffering from it so long that I believe it has cause my body to hurt all down to the bone. Sometimes my bones hurt so bad that I don't want nobody to touch me. I don't think there's nothing it don't destroy in the end.

     
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    Old 10-17-2012, 05:29 PM   #9
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    Re: Just wondering...

    Yes!! It so hurts at times right down to the bones!! My mom lives with me I care for her and by the end of some days I'm literally crawling( if I could crawl)... I also still have kids at home.. So everyone needs something all the time and I try to push it.. And suffer at night.. All night!! ... My mom is 84 and soon she will be needing another knee replacement and I know her aftercare is up to me... I just don't think I can do it.. I know I can't!! RDS is truly a daily nightmare...

     
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    Old 10-17-2012, 05:30 PM   #10
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    Re: Just wondering...

    I meant to type RSD... Sometimes my phone will type what it wants!!

     
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    Old 10-18-2012, 02:02 AM   #11
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    Re: Just wondering...

    I also have pain with sex. Lucky for me i have a great and understanding fiance hes been great. Also the peeing god ive been to the er several times and nobody can find anything wrong. Id never thought that the rsd could get to my bladder?! But boy it does make me feel better knowing im not alone. I always feel like i have to pee and sometimes i can go and other times its hard. I have to sit there forever very annoying. Im 28 with a 1yr old and rsd is not easy. Ive had it since i was 3 and diagnosed at 11 and only started seeking treatment after my son because my pregnancy was so painful and after about 2 weeks post baby my rsd got to were i couldnt function i was falling and in pain every second of the day.

     
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    Old 10-18-2012, 07:50 AM   #12
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    Re: Just wondering...

    It just breaks my heart to read posts of those suffering who are so young such as yourself squishymom.. One thing I will offer to you as a little bit of advice is as far as sex goes try different positions.. It does help some women suffering from RSD to find one that's comfortable for them.. I know with myself sometimes the pain is so bad at the end of the day especially that you don't even want to be touched.. It does help to have an understanding partner.. And it sounds like you do.. I am so sorry someone your age has been and is dealing with this.. I wish I could tell you it gets better as time goes by but you know that's not true.. I will tell you to enjoy everyday any way you can with your beautiful baby and your fiancÚ.. Some of my most special memories with my boys when they were young was the time I use to sit with them and read or Legos ect.. It seems now those are the memories they still remember..

    Littlelizzy.. I had to tell you I read your post.. And it took real courage to write that.. I say that because I find one of the hardest things is spilling your guts about the real details of this horrible disease.. Or condition whatever the hell it is!! Either way it took strength to do that.. And I want you to know it didn't go unnoticed.. I know when others (myself included) read a post like the one you wrote it will help them because then they won't feel so alone suffering with so many of the same symptoms.. I am so sorry that friends have turned their back on you.. But please know you have friends here.. Maybe not as personal as being able to pick up the phone on a bad day but know you can reach out to everyone here..

    I find many days I wish I could press a fast forward button and the day would be done and it would be the end of day instead of the beginning.. It gets very difficult to push through the day in pain because you have to.. But your body is telling you it cannot.. Well today is one of those days for me... I have my mom to care for and a family and a home.. I wish everyone a nice day..

     
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    Old 10-18-2012, 08:02 AM   #13
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    Re: Just wondering...

    Quote:
    Originally Posted by dedwards View Post
    I have been suffering from it so long that I believe it has cause my body to hurt all down to the bone. Sometimes my bones hurt so bad that I don't want nobody to touch me. I don't think there's nothing it don't destroy in the end.
    What you said just sums up the disease quite right it destroys everything in the end.. At first it attacks your nerves (and Depending if it spreads or not cause some it doesn't spread at all if they catch it early enough others like me it spreads everywhere), then your muscles, your bones, then its your skin & nails, then its your organs and everything else you can imagine. We just have to hope that we can make it through each day and that our loved ones stay by our sides, and that some kind of miracle they start spending money & doing research programs like Canada & Denmark are doing with Pain Programs that are free here like in Canada and Denmark do if you're a citizen though or at least a care card (medical card) I even think you get a temporary one if you're visiting for a long time or a study or work visa.. Anyway's these programs work wonders and the studies they are doing are working one that if they get enough people in to get RSD put on the list for us to use at home in a spray form that you spray it up you're nose and it automatically remembers that it mapped out your nerve pain system and your severe bouts of pain are gone for a time being. Ketamine is a horse tranquilizer drug mainly used to put horses down or sometimes it was used on the streets as special k the drug of use in the early 90s. Anyways, how this works is you have to go in for a set amount of times to be able to get you to a level of ketamine where you can get up to a pre-set amount of ketamine and once you are at that level for 2 weeks so to let it program all your nerves. Once you go through that and they think your RSD is bad enough to warrant it they will give you this device that you spray up your nose when you are having your crisis or crash or whatever you want to call it I am not sure of the correct term is truth is RSD likes to play with your memory or the time it takes to remember you have already pressed the send button and then it pisses you off lol. I have personally went to this program twice and it works, once for four weeks to figure out my meds, did different types of therapy that didn't hurt you and they figure out what the best thing is that you need at that time. My second time was for three weeks on a ketamine infusion, to see if I could tolerate it and if it would work for me, to do physio (so my atrophy wasn't so bad) and walk a little further then I could, could I tolerate other therapies that I couldn't in the past. Right now they are using it for people to do physio, and to be able to participate in the program they have set up for you individually. I made some positive changes from the program and can't wait to go for my next stay in the Pain Program at the hospital for at least two weeks and use their therapy program with the Ketamine infusion so I can do some more Physiotherapy and Occupational therapy, Psychological therapy and other treatments they do, like sort you out on the proper medications or therapies that are better for you not anyone elses theory of what you should be on but, what you actually need to be on. And that's the new plan for me personally now to go in so many times a year for a bolus infusion (bolus means you can go home with it) or I can keep going back into the program anytime I want. Personally It takes me a long time to write messages cause I have a hard time with my fingers spasming, they hit the wrong keys and they always drop stuff makes me so angry... This has taken me two days to type this out for all the mistakes I make lol Got to laugh sometimes about yourself or you will go bat **** crazy lol

     
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    Old 10-18-2012, 08:37 AM   #14
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    Re: Just wondering...

    Quote:
    Originally Posted by Izzabella View Post
    It just breaks my heart to read posts of those suffering who are so young such as yourself squishymom.. One thing I will offer to you as a little bit of advice is as far as sex goes try different positions.. It does help some women suffering from RSD to find one that's comfortable for them.. I know with myself sometimes the pain is so bad at the end of the day especially that you don't even want to be touched.. It does help to have an understanding partner.. And it sounds like you do.. I am so sorry someone your age has been and is dealing with this.. I wish I could tell you it gets better as time goes by but you know that's not true.. I will tell you to enjoy everyday any way you can with your beautiful baby and your fiancÚ.. Some of my most special memories with my boys when they were young was the time I use to sit with them and read or Legos ect.. It seems now those are the memories they still remember..

    Littlelizzy.. I had to tell you I read your post.. And it took real courage to write that.. I say that because I find one of the hardest things is spilling your guts about the real details of this horrible disease.. Or condition whatever the hell it is!! Either way it took strength to do that.. And I want you to know it didn't go unnoticed.. I know when others (myself included) read a post like the one you wrote it will help them because then they won't feel so alone suffering with so many of the same symptoms.. I am so sorry that friends have turned their back on you.. But please know you have friends here.. Maybe not as personal as being able to pick up the phone on a bad day but know you can reach out to everyone here..

    I find many days I wish I could press a fast forward button and the day would be done and it would be the end of day instead of the beginning.. It gets very difficult to push through the day in pain because you have to.. But your body is telling you it cannot.. Well today is one of those days for me... I have my mom to care for and a family and a home.. I wish everyone a nice day..

    To: Izzabella & Squishymom,

    I must give you all the Praise, distinction, kudo's, honor, credit you deserve including a big pat on your back for being able to have RSD in whatever form you have it in and you have little kids to take care of and elderly parents or family you have to take care of. I know I couldn't do it at all even if I wished with all my heart if I am not in bed I am in a motorized wheelchair, sometimes a little distance with my two caines like to the bathroom and stuff, but mostly my chair, how could I take care of anyone else properly I can't. I have a husband who is there but doesn't really understand most of the time, and two kids who help me out when they can. At the moment I am able to stay home alone while the kids are at school alone, if anything else goes bad in my case I won't be able to, and thats a really sad thought, since its my 35th birthday this year.

    TO: IZZABELLA,

    Thank you very much for that very nice post, its nice to know that I am able to help someone, that maybe I am able to lay here and use my time wisely and constructively cause It's way better then watching movies or tv shows all day till your kids come home. Its nice to have found a place where you belong to with others. Thanks again Izzabella for making my day a pleasent one...

    I am around if anyone would like to message me with questions or if you just need someone to talk to I am available and it welcome to message me...

     
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    Old 10-20-2012, 07:17 AM   #15
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    Re: Just wondering...

    Again as in my original post I'm wondering if anyone would know the answer to this question..

    I went for a CT scan of the pelvis and abdomen.. Mainly due to the pain I have.. It was to determine if the pelvic pain is from something other then the RSD.. Well a gynecologist ordered the test and he said the problem in the pelvic/vaginal area was due to the RSD but.. The scan of the abdomen did show possible Crohn's disease there's also another area in question (I'm praying not cancer).. I do have an appt w/a GI dr but my question is.. Could the crohns be connected in anyway to the RSD? I have read on this site how RSD does lower your immunity...and RSD does affect other areas of the body.. So any advice is so appreciated..

    I'm so worried about this.. Plus I'm so tired of drs and tests.. After my mastectomy and my reconstruction surgeries it aggravated the RSD so much that I would just sit and cry for the pain to pass.. I'm afraid of facing more pain.. Yes.. I'm having a little "pity party".. It will pass...

     
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