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    Old 01-28-2009, 10:31 AM   #1
    parcarp
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    New RSD Patient they Think

    First I would like to thank all of you for everything I have read over the last 24 hrs here. I used Healthboards a couple years ago before/after back surgery so when this popped up I found you all.
    I am almost 6mo post tri-malleous ankle fracture/shatter with ORIF 10 days after injury. I guess to be honest my ortho has known this diagnosis was coming since just after surgery. I thought I had an infection, however, it wasn't and I have been chalking up the burning and pain, color changes etc to trauma....(my boss is a podiatrist and that is what he thought too...) My ortho was concerned back in late Aug 08 that I had RSD, but I managed to keep it under wraps with Lidoderm patches for a couple months, then I had no problems with pain or burning for a little while, then I began using a Flector patch which didn't take all the pain away, but it did make it bearable. over the last month I have had a steady increase in pain/burning, the patch isn't working to ease it, I have had 7 migraines, I have woke every night the last two weeks with the sweating, and am lucky if I sleep 3 or 4 hours routinely now. If I think about when this burning started it would be the night of my surgery....it was very intense, and we thought maybe the swelling was too much for the splint I was in, so they cut that baby to relieve some pressure. That burning has never fully gone away.....
    I go see my ortho tomorrow morning to discuss this.....I finally gave up trying to fight the burning and pain, the pain has also gone into the medial malleous bone, it feels like it is still broken and is "crushing" together when I walk. She called yesterday after I contacted the office and has me off my feet, and back in my aircast if up, gave me vicodin because tramadol not working...I take motrin but it upsets my stomach, the flector patch is an NSAID so I do have that.......
    I have hundreds of questions, but what I would like to know is what is it that I should go in armed with as for questions first? I have read everything I can get my hands on but still guess I am confused about what the first steps really are going to be.
    I know that this disease is progressive, and I wonder if I have a better chance of going into "remission" since it hasn't been that long since the injury, or is that just wishful thinking? Does taking calcium/D etc help with trying to maintain the bone density? We were already wondering exactly what my bone density might be anyway because I broke my ankle walking across my front yard....no big hole, no dropped anything on it, just a small one inch difference between the yard and sidewalk.....even the ortho was shocked at the damage to the medial area when she got in there, it was shattered......
    I also wonder if there is any possibility this could be an allergic reaction to the metal of the fixation wire? My husband thinks she said it is all stainless steel, so the plate on the lateral side would be too, but I have absolutely NO issues on that side. She wasn't abe to reduce the tibia to fix it so the bone is just filling in nicely back there......
    Like I said I have hundreds of questions, but maybe starting at what to expect starting the discovery process might help......I am going to have to review the entire nervous system to get my bearings again on how that all works, I am confused about how the immune system plays into it all....sorry, auto immune system, and then wonder if my Hashimoto's has anything to do with all of this.....it is also auto immune.....we do know that my thyroid pills can cause bone loss, and i am on high doses to let the right side of my thyroid "rest" because the left was removed due to cancer. Anyone think that my Endocrinologist should be involved?
    Thanks for any guidance..prayers to all.....
    pc in michigan

     
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    Old 01-28-2009, 03:10 PM   #2
    Gaollan
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    Re: New RSD Patient they Think

    The "usual" treatment at the start is nerve blocks,meds and pt if needed. Nerve blocks are used to numb the nervous system essentially and hope it brings pain relief. They are good when the pain is still sympathetically maintained. There's no way to know for sure whether it's maintained or gone independent until you have a least one block done.

    For you, like me, the block you would get is called a LSB or Lumbar Sympathetic Block. It's done in the lower back, sort of like getting an epidural. Most docs put you to sleep for a few minutes while doing it. Depending on the doc, you could get one block a week or 2. My doc wanted to do 2 a week for 4 weeks. I only did the one and it was a disaster. It was done way too late (over a yr after starting) and the pain was independent and had been.

    If you get pain relief from the block, then the pain is still SMP. A block will also warm up the skin temp and get rid of the color changes. The reason blocks need to be given as I said above is because the effects of them are cumulative. Say with the 1st one you get 6-8 hrs pain relief. With the 2nd you could get 24 hrs, with the third, 48hrs,etc. Ideally that's what would happen. In the real world there's no way to say what will happen for you. Sometimes they work for the first 2 or 3 and then do nothing more, other times they continue to work and you get lucky to one of the very few who get remission. Remission is a total lack of any pain,skin color changes,skin temp change, absolutely no symptoms at all. If you have even a bit of pain still there then you still have active rsd. I read the other day somewhere a guy saying he was in remission but yet the paragraph above he said he still had some pain. Nope, not remission then! I like to clarify for the "new" ones.

    It's been 6 months and some would say your "window" is closed or closing. All the studies I've read say it needs to be caught and treatment begun in the 1st 3 months. At 6 months changes to the nerve endings begin. I'll stress again though, that everyone is different!! None of that means it's "too late" for you! It's just ideal that treatment begin soon after symptoms start.

    I wish I could say you have a better chance at remission but there's just no way to know for sure. We react to things differently so you may begin treatment and be one of the lucky few or not.

    A test you could get is a bone scan. If there are changes to the bone caused by rsd then it will show. If there are no changes then it won't. It's kind of a 50/50 thing. Just because the test comes out normal doesn't mean you don't have rsd,just that there's no bone changes. The bone changes it picks up are osteoporosis or the beginnings of it called osteopenia. It also shows healing fractures. That's all that showed up on my first one. I didn't even know my knee had been broken! :-O They(ER doc) said it was just badly bruised. LOLOL Suuuurrrre. LOL

    Taking calcium will help. Grapeseed extract is something that has been successful for slowing down spread and/or keeping it from spreading. Like everything else about rsd,it really depends on your body. Vit C is also a great thing to take. They've done studies that show taking it after a broken bone reduces the chances of rsd but if you already have it it still helps.

    I don't think it sounds like any kind of allergic reaction. It sounds like rsd,burning,color change,temp change,pain....rsd.

    RSD affects both our whole nervous system, the sympathetic and parasympathetic. They keep our voluntary and involuntary systems running. This is the reason people deal with a low grade fever for no reason, blood pressure changes, sweating, hot flashes,etc. with rsd. The immune system is all part of that as well and usually isn't affected by rsd early on. You know it's being affected if you seem to pick up every cold germ known to man every time you turn around. LOL

    Any doc you have right now should be involved in a way. All the docs you see need to know and understand what rsd is, if they don't already know. They should have factual info and not some of the crap too many docs out there believe like....it can't spread(yeah right!) It can and does in most. Since it travels along our nerve pathways it can go anywhere it darn well pleases! lol You need a good pain management doc for the meds and they usually do the blocks as well.

    My opinion in the process is to just be realistic. To not think oh it'll just go away or whatever, but to not give up hope either. Think positive thoughts that blocks will work, keep a good attitude as much as possible. Adjusting is never easy. It hurts me to see people get blind sided when they realize it isn't going away and their life is changed forever. Once you have rsd, you do have it for life. If you get remission it could come back from stubbing your toe or for no reason at all. This is the big sucky part of the whole thing.

    Be proactive, ask all the questions you want to and we'll do our best to give you our experiences and knowledge. Don't let any doc treat you badly for any reason. It sounds like the docs you have now are good ones so you're lucky.

    I guess I covered everything you wanted to know for now. LOL There is no such thing as a dumb question either. Speak up and ask.

    Welcome to the board, just sorry it's because of rsd.

    Hugs,

    Karen

     
    Old 01-28-2009, 05:48 PM   #3
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    Smile Re: New RSD Patient they Think

    Hi and welcome! I haven't heard anything recently about RSD being auto-immune-related, but about 10 years or so one of my docs told me that people "studying" RSD were leaning toward it being an auto-immune disease. I also have Hashimoto's and Type 1 diabetes, both, as you know, auto-immune so who knows, but also as you probably know, auto-immune diseases tend to come together...if you have one, you're apt to get another. Anyway, my final answer is that I don't know if it is, but was told that it might be.

    It's nice to meet you and I'm glad you found us .

    Sharon

     
    Old 01-28-2009, 09:05 PM   #4
    parcarp
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    Re: New RSD Patient they Think

    I appreciate all the input, I am nervous, a bit on the frustrated side I guess, like with accepting Hashimoto's, well, not as bad as a STD but hey they are for life too.....I am having the "sweats" or hot flashes tonight out of nowhere, usually get those in the wee early am hours, but hey, I am starting to resign myself to the fact that there is no telling what the hell this body will do at this point...
    I was just laying in the bed thinking a few mins ago, it's 11:45p here in Michigan, so you'd think I would be asleep, but, I was just debating in my head the "window" of time, conservative or invasive, then hubby may be out a job who knows when *thank you ford mo co*, so I was debating just telling her to get me in to the pain clinic and let's just do this block asap....I was in a pain clinic for L1/L2 disk issues a while back so I had a fantastic pain doc for that, cutie pie too, but if I said I needed to be "far away" during an injection, well far away is where I went.....I don't know yet if he has dealt much with RSD but will by noon tomorrow, and our clinic has a close group of PT that we routinely work with for our foot clinic, and you can bet your tush I am going to figure out which has the most RSD experience by noon too. I guess that I am feeling the "need" to push like hell right now...I do NOT want to be on my rear end doing nothing again....oh well those who had ankle stuff know...and being in a wheelchair isn't my cup of tea.....I have the trust of the doctor I work for to work at home 90 percent of my time if not all 100, and I do not want that to mean I work from the couch or the bed...
    I'm feeling not only frustrated but a little aggressive, and I hope that doesn't ebb by morning.....
    I appreciate the experience, and I too wish it weren't with RSD....I got very lucky with my hashimoto's once diagosed, so the talk of the antidepressants, and anxiety pills just makes me shudder....before they knew i had hashimoto's, they thought I was having a major breakdown.....preemie child, cycle changes, working in a plant life and being away from preemie...yeah sounds right, right? No, 4 different antipsychotics of one form or another, and I still, to this day do not remember the vast majority of my daughter's first 4 years.....I see pictures and think...when did that happen....and I took them! My mom was remembering too and she remembers coming over and I had the house locked up/closed off all the time...what a way for a baby / toddler to grow up eh? So I am fearful of those pills in any form...I have taken zoloft for a little while with my back, but it didn't phase me like the rest did...I almost think I would rather have my ortho cut off my left foot/ankle than to be back on all that crap and miss my mind....can I get lucky twice and be able to control it easily like the hashimoto's and hypothyroidism? Dunno.....wish? Absolutely....who wouldn't? Just still in part of that "For cryin out loud now what?" phase, and the "you've GOT to be kidding me" phase too......but desperately need to cling to the "No way in hell will I lose life" phase more and more......
    My mom has always said, God doesn't give us anything that he doesn't think we cannot handle......I say like Mother Teresa: Why does he trust me so much? However, I guess it could be worse right? There is always "worse"...someone out there is crying in pain tonight....my heart breaks for them.......someone out there lost their preemie tonight..my heart breaks for them too...I didn't, mine is beautiful and 9 yo......Someone out there died of cancer just now......and I pray for them.....but I didn't.....If I can hold on to my blessings, maybe I won't lose my mind.....
    But I needed the wisdom I saw here......thank each and every one of you for what you've shared......maybe not much with me, but there are hundreds of posts on this topic, and I found help in every one I read.....I am grateful beyond words......
    Goodnight fellow RSD'ers.....even if there is pain tonight I pray you are held by angels.....
    pc

     
    Old 01-28-2009, 09:41 PM   #5
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    Re: New RSD Patient they Think

    Hi parcarp,
    Welcome to the boards..the people and information here have been so helpful and supportive for me and I hope you find as much comfort here as I have.

    I think Karen and Sharon covered just about everything, but I wanted to tell you how it was for me in the beginning, sleepwise. I don't if it was because my body was adjusting to the RSD or if it was from the anxiety from all the information I was reading, but I was sleeping only a couple of ours each night...I was exhausted.. As the months have gone by I am sleeping a little better and it may be from the Neurontin medication that I am taking for the RSD or who knows....I have tough nights still when the pain maxes out, but overall my sleep has gotten better. Also, the night sweats have lessened..

    Your ortho may not have mentioned this as yet, but don't ice your foot/ankle as this is not good for the RSD diagnosis and causes more constriction.
    My RSD is a result of a bad ankle injury in Aug. 2006, with surgery in Feb. 2008. I was fiinally diagnosed in Aug. 2008 (it should have been a lot sooner)so who knows how long I've had the RSD....!!! Good luck with your appointment tomorrow and be sure and ask what kind of physcial therapy if any as yet, your treatment team advises!

    Keep up the good attitude of strenghth, and remember we are all in this together!! through tears and smiles!!!
    Angel blessings to you, too!
    Tigerlily xo

     
    Old 01-28-2009, 11:29 PM   #6
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    Re: New RSD Patient they Think

    You got the great attitude part down! Of course you can't just sit around so you absolutely need to just get that ball rolling and maybe.....maybe you'll be our lucky one!!! It's always the hope that one of us will be The One and we can rejoice along with that person.

    I can't believe I forgot the NO Ice part!!!! DOH! LOLOL Thanks Tigerlily for not forgetting.

    As for meds you might take....something for pain(obviously), possibly a muscle relaxer like baclofen,soma or zanaflex,for muscle spasms and jerking of the affected part(s) and maybe lyrica,topomax,cymbalta or neurontin. That is not all of the ones at the end at the same time, just one. LOL They're supposed to help with burning,pain and numbness. We're all different so for some of us *raises hand* it does nothing at all. I'm hoping you won't need to go this route but figured I'd give you some names of meds and what they're for just in case.

    Trying to adjust to all of this does have us swinging through the emotional forest like Tarzan. We can only take things one day at a time. Keep us updated on what is happening.

    Hugs,

    Karen

     
    Old 01-30-2009, 04:39 PM   #7
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    Re: New RSD Patient they Think

    I wouldn't really say that any RSDers go into remission other then children and teens.. and if you have been Dx with RSD within the first six months of injury along with intense PT...
    Theres so much said about remission.. so many questions... What is remission.. You hear that all the time.. Is it pain free? Is it pain free along with taking meds?
    I could say I am in remission.. but I still take meds.. I still some bad days.. I am not sure I am in remission.. Like my dr says.. Does it really matter.. as long as my quality of life is better. Thats what counts.. I am not getting any worse.. I've only improved.. I've only met one person who was only six yrs old.. She was a pt where I use to work.. She injured her knee and was dx with RSD.. She started intense therapy for five days a week for over a month.. She is completely better.. No symptoms of rsd nothing.. That is what I call remission..
    I think the most important thing is your quality of life.. Trying to get back what you lost.. There are a lot of pts who can get there..
    Once you get the proper cocktail of meds, you start sleeping better, you start physically moving around better and with all of that mixed together.. It helps with your mental state.. All of that combined will help with any chronic condition..
    So my feeling is.. The goal is not get into remission. Realistically.. may not happen.. The goal is... to improve your quality of life..... Improve you mental state.... When that is done.. Life is ok...
    Just my opinion..
    Michelle

     
    Old 01-30-2009, 04:49 PM   #8
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    Smile Re: New RSD Patient they Think

    I 100% agree with you, Michelle. We can't sit around waiting for it to go away. Most likely, it won't happen (at least, to me...23 years into it) and we will be VERY disappointed if we count on it and it doesn't happen. It's better if we can get our pain under control and then try to put our lives back together. I think this advice is more for people who've had RSD for a while and have tried all the treatments. I wouldn't forego those treatments because they might help or at least, keep the pain at a place where you can still function.

    Have a nice weekend, everyone.

    Sharon

     
    Old 01-30-2009, 07:00 PM   #9
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    Re: New RSD Patient they Think

    According to all the medical papers and such I've read remission is a complete lack of any symptoms at all. No meds, no pain, nothing. Like with cancer. You're in remission when there's no cancer to be found. If you still have some pain or any other stuff then you're not in remission.

    I'm with you in that if you find something that's worked and gives you back part of your "life" so to speak, then YEA! Anything that helps cut back on the amount of meds, YEA! LOL Remission is good but IMO with so very few getting it, it's your attitude and what you do with your life regardless of anything else that counts. You can let this consume you,give up and sit around, or go on despite it all and do what you can.

    I'm happy for every single person who finds something that allows them to go back to work and function. I miss working and other stuff, like riding in a car lol, but eh....I have a great life, the most awesomest and best hubby in the world,fantastic kids. I'm still breathing and laughing....what more could I want?! We are all strong women...and men . I love this board and every single one of you on it!

    Ok,mushy stuff over. LMAO

    Hugs,

    Karen

     
    Old 01-31-2009, 04:32 PM   #10
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    Smile Re: New RSD Patient they Think

    Hi Guys,

    We love you too, Karen . You said it perfectly...we have to find what works for us to allow us to get the most enjoyment out of life as possible. I guess that's the quest for all people, but a little harder for people who are in pain with chronic illnesses. I'm glad you've found what works for you. The most important thing, I think, is a supportive family and my heart breaks for all people who don't have that support.

    Sharon

     
    Old 01-31-2009, 05:46 PM   #11
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    Re: New RSD Patient they Think

    Sharon,
    I agree with you.. When dx with RSD its always best to try all treatments offered to you first..
    I just am not sure about this remission thing.. Is remission pain free for how long?? Some pts. who have had the lidocaine infusions.. They are pain free for several yrs.. is that considered remission? Its been been a yr since I had my last infusion.. I am not any worse but I still have pain.. and take meds on those bad days.. and still take the neurontin everyday.. I guess the best thing I should do is call my Dr and ask him.. I know what he would say to me.. lol..
    What counts is that you are feeling good.. Thats how Dr S is... lol
    I know I will probably have this for the rest of my life.. and I am sure I will have those good and bad days for the rest of my life.. I just say to myself.. It is what it is..
    With any illness its always good to have that support... I didn't have it at first.. I am not to sure anyone believe me.. For four yrs the dr didnt know what was wrong.. They just kept saying herniated dics.. So family and friends thought it was that... At least the first two yrs they didn't.. then the symptoms became so visible..
    My father.. He still to this day probably don't believe me.. I don't care.. I know whats wrong with me.. and I know my brother don't.. He once said to me.. Stop feeling sorry for yourself.. and get treatment.. instead of sitting around look for a job... your doing this all to yourself.. I said I have three letters for you.. RSD.. look it up on the internet then call me back.. He never did.. so now we aren't to close.... I would never be like that to him or anyone else.. as long as I don't live in their shoes I do not have a right to judge..
    I'll be honest though.. This board was my back bone.. It fell into my lap at the right time.. I was a mess when I first came on here.. Physically, mentally and financially and relationship... but I finally got it all together.. lol.. I am sane now ....
    Now it my turn to give the support back...
    Michelle

     
    Old 01-31-2009, 07:48 PM   #12
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    Re: New RSD Patient they Think

    Quote:
    I just am not sure about this remission thing.. Is remission pain free for how long?? Some pts. who have had the lidocaine infusions.. They are pain free for several yrs.. is that considered remission?
    You are considered in remission when you are pain free. It doesn't matter for how long. Those who are pain free for years, the answer would be yes, they are in remission. When they pain comes back, you are no longer in remission and would be classified as having active rsd again. If you manage to beat it back and get pain free again, then you would be labeled in remission again.

    I'm so lucky I have my hubby and my kids. They have been my rocks on those days when I just didn't feel like being very strong. Hubby and our daughter Serena who is the only one living with us full time, both of them have a shoulder or arm for me to hang on to when I can barely shuffle across the floor. She was 9 when I got rsd. I still smile thinking back on that first year. WC was making my life a living heck and no meds. *sigh* She would come ask me every couple of hours if I needed something to eat or drink. Then see if I had to go potty. If I did, she put her little arm out there, like a gentlemen does for a lady and I'd "lean" on her as she escorted me to the bathroom and got me safely back to the couch again. What a kid huh? She's always been like that for others as well. We raised her to not see differences in people but to just see them regardless of anything else. I am a very proud mama. LOL

    Hugs,

    Karen

     
    Old 02-01-2009, 04:13 PM   #13
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    Smile Re: New RSD Patient they Think

    Hi Guys,

    Michelle, I guess it really doesn't matter to me what the definition of remission is. If I don't have pain, I'm happy and if I do, I'm not (but try to be, anyway ). That definition and the one on the stages never really mattered to me, but I realize that it does to some and that's okay too.

    I'm sorry about your family not being supportive and not believing you. Nobody deserves that. Like you said, we shouldn't judge anyone, even if we feel we've been in his or her shoes because in the end, even if it seems like we have the same circumstances, they can never be EXACTLY the same (mental state, support at home, finances, etc.).

    Karen, that's so cute about your daughter when she was little. How adorable! My 4 year old niece is kind of like that too. It amazes me how empathetic a little child can be. I've been watching her and her 2 year old brother 3 days per week since September when my sister went back to teaching. One day I told her that I wouldn't be able to go up and down the stairs too many times because I need to "save my knees." We were upstairs and I realized I had forgotten something downstairs so I told her I'd be right back up. She said to me, "Sha-Sha, let me do it. Save your knees." Sweet.

    Have a good week, everyone.

    Sharon

     
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