LACK OF RESPONSES

[ChiariMSwithPOTS]

Hi all,

I am quite frustrated about the lack of responses that I'm getting on my posts. My last post hasn't gotten anny responses at all. I am so upset that I'm not getting anny feedback. I know that there's people on the boards that have gone through the same thing that I have. And yet no responses, even though it's been read a lot. -- I have a feeling that this is happening because I'm new. And that happens all too often on boards. People bond with members, and quite often new members are often ignored because they're not known. But it's the new people that need the most help. And if it's not because of being new, just please take the time to answer posts. We all know how much it means to us when we get feedback. Post to others the way we would want people to post to us. OK? Thanks for listening.

[persephone]

Sorry you feel blue I have to confess, I haven't seen many of your posts. I know you replied to my theories on blood pooling the other day, but aside from that, I've not really come across much by you.

I've been on these boards since Dec 04 and I've never found it cliquey- the people here are my lifeline and I feel I really belong. The people here must be tolerant if they can put up with me!!!

[Poohbear]

Hi! Just wanted to say I'm sorry you are feeling disappointed. I try to reply to posts when I can but some of your posts haven't applied to me or I couldn't relate and didn't have any info for you. I do support you though and hope you get some answers and relief soon.

Also, I have been feeling really bad myself lately and haven't had the energy or stamina to sit up and post. It wasn't meant personally to you. We have new members here on a regular basis and I think we do respond well to them and we try really hard to welcome everyone.

I'm not sure what's going on....I remember your post about chiari but I haven't been diagnosed with that so I don't really have anything to offer. I know there are others who have this as well but I'm not sure they are very active on the board (I'm not positive about this though).

Anyhow...I don't know that I have answers for you but I did want to say I'm sorry that you're feeling neglected because that's not people's intentions.

[Jenn202]

I a, also sorry you feel so dissapointed. I know how it feels to not get responses to very important questions... I have been on boards that have done this. I can assure you that everyone on this board are very caring people......

Sometimes with me I only have a litmited time so I scan the posts really fast and only answer 1 or 2.....

Like the others have said... This is not a "clichy" site. I was a new commer this past winter.....

Anway, hope you feel better

[Sophia3]

HI

My swiss cheese brain can't remember your post that you are talking about. I must not have had something pertinent to add.

But don't feel like the Lone Ranger with NOBODY replying or very few replies to your postings. I have had it happen to me as well so I just try not to take it personally...

I have had a very ROUGH summer with the loss of a family member thru death and an 85 year old mother who is crazy (many of us say that about our mom's but in our case, mom is now certifiable)

So my fatigue levels and cognitive problems have kept me from reading many posts. Frankly, my fatigue lowers my tolerance levels for visiting message boards. And when I am very tired, sometimes i just don't feel like replying. I just lurk.

I do remember asnweing a question on blood sugar here or someplace.

Perhaps if you repost your question (that didn't get answers or try a better title maybe? To get attention) folks may see if they have anything to ad.

Good luck.

[Guest Julia59]

Hi----i'm so sorry you haven't had many responses. I can assure you that it isn't always this way. Sometimes people may not have an answer because they don't know about a certain issue posted. Not a lot of people on here with Chiari. I was diagnosed with Chiari---but it was later changed to hypo-plasic posterior fossa, and vertebral artery compression on the brain stem also. I also have congenital cerivcal spine stenosis, cervical/cranial instability---and EDS along with my POTS.

I replied with a rather long post to you---but I removed it because I figure some people may get tired of hearing my ramblings of the chiari/and spinal issues. I tend to get carried away as this stuff can really get me down----the Pain---and all the other junk that i'm sure your all to familar with. It's tough----but don't feel you can't talk about it. There are just times where your post might not be caught for various reasons.

I'm always around---and I have a lot of information that I have learned over the last few years------so feel free to e-mail me any time.

Otherwise----just keep hanging around----we all love ya--------------- WE are here for you.

This chiari---spinal stuff is a whole different world aside from the POTS. You are a very special person as you have to deal with more then one health issue. Give yourself a pat on the back for just getting up and trying to keep going each day----you deserve the same support as anyone else.

I have had posts that had no replies---and I have had posts that had 30 replies. I just think some people may not be familar with what is being posted sometimes.

I'm sorry that you felt bad about this-----------------sending you hugs.

Julie :0)

[Laura]

Hi KLS! I've read your posts and have been waiting for answers too! I haven't had any experiences with phlebitis or with Chiari, but I was interested to see what others might have experienced. I'm sorry that you've felt badly because of this. I hope you'll stay with us and keep posting! Laura

[melly4]

I'm sorry you are disappointed with the amount of replies you have received from your posts. I am also a newcomer, and have had lots of replies to some of my posts and not so many to others. I have also had people totally and vehemently disagree with my posts or replies to other posts, but I try to keep a thick skin and hope that I will meet others like me and my son and get quicker answers to our questions because so many people here have been down this road long before us. And I have met people who have shared my experiences and symptoms and agree with my take on things. Everybody's different as far as exact combination of symptoms and what treatments work best for them.

If I haven't replied to any of your posts, it's because I didn't have any info that I felt I could offer you in the form of help.

But, in the form of support, I'll be there for you. Drop me a line anytime by personal message here, and I'll send you my e-mail address. Please don't leave!! I truly believe this a symbiotic community with a lot of people who want to help each other. You're included!!

Melly

[Michelle Sawicki]

Hi there,

Nina, Melissa and I try to make sure that no post goes unanswered, but we've all been out of commission as of late. I'm sorry you have not had some of your posts answered. This can happen for a variety of reasons, but I can assure you that we're not in the practice of ignoring new people.

Michelle

[MightyMouse]

ditto. I just got home from school... and I'm still out of commission; I've been reading but not posting. As for phlebitis, I've got no idea about it. Nina

[mom4cem]

KLS,

I'm sorry you feel this way. I know, I have felt that way too at times, but really I know it is because not everyone can apply themselves to the topic, they either have never experienced it, are just not feeling well enough to post or whatever the case may be.

Even if I have only gotten one or two replies I have found great comfort in that. Please don't feel left out, we are here for you.

[taylortotmom]

I have been an active member of this forum for several months and want to emphasize that this forum is a very welcoming, supportive forum. Two of our moderators have been quite ill lately so they have not been able to do as much as they usually do (both are awesome for the amount of time they are able to give to this forum). I , personally have had three TERRIBLE weeks physically as is the case for many of us. If you don't get answered please, please don't take it personally. Dysautonomia can knock you down at any time with little warning so understand that the members here have varying levels of functioning at any given time. Anyway, thank you for letting us know how you feel and I know I personally will try to do a better job of responding to posts as I can. Take care.

Carmen

[morgan617]

As I was saying this morning, we all seem to be falling into the grand canyon of potsholes. I too apologize that I haven't answered. I know absolutely nothing about chiari, don't have ms, so it's hard to relate, but never the less, I could have at least posted and told you that. i guess I just assumed the people that knew more about it would respond and then my lame brain flakes out.

Some peole get a ton of responses on something and sometimes only one or two. I'm not sure why this happens. I think sometimes we pick and choose, not out of favortism, but because it's an energy zapper and we respond to the things that we have in common. Or that grab us by the rear.

Regardless, I will try to do better in future. As far as phlebitis, anyone who has blood pooling will be at higher risk for phlebitis or clotting. That is one reason compression hose are so important. And keeping your feet up without pressure to the calves etc. I would assume it's much higher risk for troublesome varicosities too. People should never cross their feet or legs even if their blood doesn't pool.

Again, I apologize. Hope we can be better for you in future...sosorrymorgan

[Eillyre]

Sorry you're feeling discouraged by the lack of responses -- probably got more from this post than the others put together, right?! I have been purposely avoiding much in the way of posts and e-mails but thought it very important to resurface for this one. Thank you for communicating your frustration -- it's the only way we can find out that there is a problem and try to resolve it. I'm glad that you feel comfortable enough to share with us rather than just leaving the forum altogether.

Our forum has always been known for its friendly atmosphere; it's one of the things I love most about it. However, if part of the "family" is feeling left out, I think it is essential to straighten out the problem. Most of what I have to say has already been addressed, but I'd feel better if you knew that I cared no matter how repetitious those sentiments might be.

First, I think a majority of us simply have little or nothing to add to some of the posts (not just yours). I know that I have no information of use on Chiari, MS, EDS, CVS, IBS, etc. -- I have none of those problems myself, so I have no first-hand experience. I'm still working on figuring our POTS & CFS! I know I'm not purposely ignoring you and I suspect most of the others are in the same boat. Our lack of knowledge is the problem, not unfeelingess or cattiness. I suppose we could post something to the effect of "I'm sorry you're feeling bad, but unfortunately I can't help you out," but several of us are so worn out that we are trying to conserve our energy to write posts that are helpful to others. I would be too exhausted to write anything worthwhile if I replied to all the posts. That brings me to my second point.

Many of us are having a lot of trouble with symptom flare-ups at the moment. Autumn is always busy, and I suspect many of our bodies are rebelling under new workloads, environments, etc. There are also a fair number of people recouping from the stress of family emergencies/crises (I'm in that boat, too.). I'm struggling to just function (working my way back after major 2-week exertions), so correspondence has been low on my list of things to do. I even e-mailed a number of friends to let them know that I wouldn't be writing for at least 2 weeks.

I guess the bottom line is that yes, it's very frustrating not to receive answers, especially when you're suffering. However, the reason most of us are on this forum is because we're all suffering too. Sometimes we can help, and other times we need to be able to just love you from afar.

Hope this helped some. I'll try to be more attentive to posts when I'm feeling better.

Wishing you a restful week,

Angela

[Ernie]

Hi,

I am sorry you feel left-out.

I have been with this group for a little over a year and people are very helpful and compassionate.

I try to answer without prejudice to as many people I can with the limited energy I have.

I had some posts with limited answers and some posts with many answers. I appreciate all the answers I get because I know that the other members are also sick and are volunteering their time, knowledge and support.

Some posts are very difficult for me to read. For example, if someone writes in ALL CAPS I can't concentrate and get headaches. So I just don't read them anymore. Another problem I have is that if someone write with shortcut email, ie u instead of you, I get confused, so I don't read those posts either.

I have checked your topics and I don't have the technical knowledge to answer your questions.

I will be glad to answer your posts whenever I can relate to them.

[Dizzy Dame]

I'm sorry you feel neglected. I read your posts, but I had no advice for you so I didn't respond. I'm new too and I've found the people here to be really caring, so I'm sorry you had a bad experience.

Lauren

[corina]

i am sorry you feel this way. i haven't read everything, as that's one of my problems lately, but a problem might be (this goes for me at least) that i have trouble remembering. i have had several times where i thought i had answered, but i hadn't.

also, as i don't have much energy and lots of brainfog there are days (or more) that i'm not around. at that days i don't have the energy to answer or come up with my own things as well.

hope you understand, and wishing you the best,

corina

[Dawg Tired]

I. too had a post with no replies when I first posted - not here but on another site. I was told I had to have a pacemaker and the other site was the only place I knew to turn at that time. Finally Nina (our beloved Mighty Mouse) replied to me in an e-mail. Bless you, MM!!

But the reason I didn't get replies was that no one (or very few) could relate.

I kept posting and some of my posts got replies, some didn't. I find a very friendly bunch here who have offered a great deal of support. Keep trying!

[pamela]

Sorry that you felt out of the loop. I read some stuff about the Chari malformations but when my CT of the spine and neck were unremarkable I quit reading. I have not read your question on phelibitis but am going there now..

Now that you have met new friends don't turn into a stranger.

Pam

[becky]

hiya,

sorry if you feel left out, i, like most of the others i think didn't really know much about what you were posting, so i didn't answer, not cos we are clicky (is that spelt right?)

i have been a member for a few months now i think (?) sorry, brain fog! and i have found that the people on here are like one big happy family who help each other and care about each other, see how many replies you got this time!

i personally have no idea what chiari is, and i'm not really up on blood pooling either so i can't help you there.

but if you want to share funny stories about passing out i'm your girl!!

hope you get more info and help,

lots of love and hugs

becky x x x

[Sophia3]

For the record, I don't now much about personal issues of Chiari and all that goes with it either. I do know some folks who have been through it all though with surgeries and such.

I did learn something from this post. The next time I don't get replies, I will simply ask folks to respond!!

This certainly worked for you and I hope you feel better about things.

[Aprilmarie52]

I'm sorry you feel left out. If I havent responded to your posts, its not because I am ignoring you. I probably just am not having the same symptoms as you are. I hope you feel more welcome in the future.

[tracy]

Sorry you have felt left out. As for some have already said, I don't have any info to add to your posts, Sorry.

I have not been on for the last two weeks as much as I'd like or have been before. Been very stressed(family issues), daughter's b-day, over did it big time, and just feeling bad all together.

Again I am sorry and if I didn't before I welcome you and I hope you find some help.

[Sunfish]

KLS-

i know how frustrating it can be to not get responses to posts.

others have already given a lot of "reasons" why it can happen & i doubt there are many of us who haven't had it happen at some point (me included). i think in general we all make a point to welcome new folks and respond to posts, but things can fall through the cracks.

i know that i read your posts but chiari & phlebitis are two things that i have zero knowledge of. and then - believe it or not - i have a list of "posts to catch up on" as i'm constantly falling behind this last month or so, and your post on cortisol is on the growing list.

melissa

[Evie]

I have been on other forums where new people get ignored, its really horrible. However i have found this board isnt clicky, so please dont think it was a personal thing against you being new. I tried to respond to your question about cortisol (sp?) a few weeks back (i think that was your post?), i hope you foudn some answers in regards to that area. I have not been on this board as much lately as i have had lots of essays and study, it seems alot of people have been out of action lately ... im sure we will all do our best to make sure we dont miss your posts in the future