To Everyone that has suffered from Pain

Chronic Pain
#1

I do thank everyone who took the time to reply to my first confusing post. And although I am thankful for the suggestions I am dissapointed in the numerous emails that suggested I find a group of people who have my specific condition. I’m sure they were not ment to make me feel un-welcome and were only looking out for my best interest but still, it didnt feel very good. I was going to make this post under my initial thread but thought maybe it was important enough to deserved its very own.

When we feel the need to reach out for support for our pain its a pretty sure bet were all experiencing a fair amount of similar circumatances. Sure pain can effect so many different parts of the body and involve many different conditions, but it still may hurt just the same. I dont care if you have a wort on the bottom of your foot that chroniaclly hurts. If it keeps you from living the life you want, you belong in a place with people who can understand that feeling. Not nessesarily with peole who understand what lead up to getting the wort.

I’m not saying people with my condition dont understand what I’m going through at all. Infact most everyone with IC has experienced some amount of pain. But if there are people who can count the days they felt pain free in the past year on one hand than I probably have more in common with them.

alot of IC sufferes dont know what its like to be a slave to a little pill with an orange warning label, and maybe not everyone here takes pain meds, but I’m betting more CPers here have at the very least experienced PM than I’ve found with IC.

As I said in the beggining I’m sure no one ment to make me feel un welcome and were just trying to help. But there is a huge lack of understanding in the world about CP already and why we sometimes need the medications and care we do.
The way I see it we all need to stick together no matter what our condition. There is no need for anyone to feel alone or isolated in this world. Which is just what CP has done to every single one of us at some time.

If we dont show eachother understanding and open arms why should we expect anyone around us to understand.

If youve gotten to this part of my thoughts, thank you for listening. It just bugged the heck out of me to get more posts suggesting I go elsewhere than welcoming a fellow Chronic Pain Sufferer. You never know who your all but turning away, I may have something to say which could make a difference in your day.

Thank you Mrs. Barb for making me feel welcome and accepted. You must be one of the angels in disguise.

#2

I have IC. Sorry for your suffering. This is my first reply to this list. I don’t read too many of the posts, just too busy tying to get well. I have many other conditions, IC is just a part of the picture. Just want to say I hear you on your pain, and the whole idea of support. I didn’t read the other messages, so I don’t know what was said. I think its good to belong to a CP group and perhaps as well, groups specific to individual diagnoses too. As long as the group is truly supportive and a learning opportunity. Some groups I’ve been on are not truly supportive.
Wishing you all the best,
Lynne
----- Original Message -----
From: Avalonmailto:chronicpain-cpt8778@lists.careplace.com
To: annalynne3360@msn.commailto:annalynne3360@msn.com
Sent: Friday, April 25, 2008 4:54 AM
Subject: [chronicpain] To Everyone that has suffered from Pain

#3

Hi Avalon, I am so happy to see you posted your HURT feelings, no one on here should ever have to feel rejected, regardless of there diagnosis!!! There are plenty of people out in this world that don’t think before we speak, and sometimes it isn’t nice…I share this feeling with you, because not to mention names, but when I first joined these two ANGLES reach out and still reach out to Help or just chat ok ok to vent too! :slight_smile: But as far as I see it you ARE a part of this group and hope you stay around, don’t let other people detour you they don’t know what each and everyone of US suffer through on a daily basses!!! So again I will say “WELCOME” ABOARD… I am sending you lots and lots of HUGS and PRAYER that you have a pain free weekend and I will end with that…Thinking of You! With all my love, Barb :slight_smile: PS: Thanks for your friendship and words of Kindness!!!

From: Avalon chronicpain-cpt8778@lists.careplace.com
Date: 2008/04/25 Fri AM 03:54:19 CDT
To: msboosting@windstream.net
Subject: [chronicpain] To Everyone that has suffered from Pain

#4

Thank you Annalyne for taking the time to reply to my post. I’m happy to have someone else with IC here on the CP forum no matter how often you get to post. I do hope the time you are taking to focus on yourself is helping you heal in anyway possible. I hope you’ll let us know how your doing when you can. I’ll be thinking of you…
Barb, what can I say…Thanks again, always there with a helping and understanding hug. Who could ask for more.
Thank you for letting me know you understand where I’m coming from. It can be a hard road to travel down especially without a hand to hold. Spouses, sigifigant others and family are great to have in your corner but sometimes you need a friend to just listen to what your thinking. Even if thats venting!!
I wont be disapearing any time soon, And who knew…someone with IC was here too!!!
I’ll be thinking of you this weekend and hoping you enjoy it as much as possible. Even your kind words have inspired me to take a little more peace in mine.
Be Well and speak with you soon.

#5

Your kindness is so appreciated, I’ll think of you too, with prayers. I can tell you the most help I have had with IC and any of my many health issues, is to get on an all organic, mostly vegetarian whole raw foods diet and as much exercise I as I am possibly able to tolerate. IC is not well understood, but it is inflammatory and any inflammation can easily be exacerbated by chemicals in our foods and environment.

Exercise helps our bodies purge these toxins, but it isn’t helpful if we keep adding them back in… so… diet is important to pay attention to. When I first started a regiment of this diet with aerobic activity, I got very sick: increased rashes vomiting etc… part of that I believe was my body purging toxins and the other part was due to one of my other illnesses for which exercise is a trigger (mast cell disease)… but I over came it through perseverance and desensitizing to exercise under my doctors advice and care. I even ran a marathon just under one year after major brain surgery.

I am sick again , un able to exercise because of further brain problems… and as a result my mast cell disease has retuned with a vengeance. But once I get my brain issues resolved and I can run again, or even power walk, I believe I can repeat the overcoming of that disease once more. I don’t believe diet and exercise are a cure, per se, or my symptoms wouldn’t have returned… I just believe it is the way to keep the symptoms under control and live a better life! By the way, I don’t know if you have ever heard of mast cell disease, but many people with it also have IC. Diseased mast cells or having too many mast cells can wreak havoc on the tissues of the body causing inflammation wherever they release their mediators.
God bless everyone!
Lynne
----- Original Message -----
From: Avalonmailto:chronicpain-cpt8778@lists.careplace.com
To: annalynne3360@msn.commailto:annalynne3360@msn.com
Sent: Friday, April 25, 2008 6:06 PM
Subject: Re: [chronicpain] To Everyone that has suffered from Pain

#6

See low and behold there is someone here on Careplace that shares your pain and IC, I just could not imagine that no one on here would have this IC and CP symptom’s :slight_smile: I just want to send a quick post to let you know that I am over JOYED for you!!! I sure hope the two of you can chat even exchange numbers of private email addresses:) Ok I have not checked my inbox on Careplace in a week so better tend to that, I see I have an invite from you to be your friend, WELL I AM HONORED, I will continue to be your friend and confident! Here is to a pain free weekend…With all my love, Barb :slight_smile:

From: Avalon chronicpain-cpt8778@lists.careplace.com
Date: 2008/04/25 Fri PM 05:06:42 CDT
To: msboosting@windstream.net
Subject: Re: [chronicpain] To Everyone that has suffered from Pain

#7

Hello Lynne my name is Mrs Barb/aka Barb, I just wanted to thank you so much for responding to Avalon’s post and opening up to let he/she feel supported and cared about. My goodness I can’t believe the unwelcome responds he/she got-grrrrrrrr made me angry :frowning: No one is alone here on Careplace there is always someone out there who can relate, or have the same terrible diseases and more, so I just wanted you to know how happy I was to see your response and to let others know that you to suffer from IC. Thank You, Thank You! I don’t think we have meet yet, but I do look forward to chatting and posting with you…Again good luck to you, and I sure hope you have a pain free weekend! Big Hugs and Love to You! With all my love, Barb :slight_smile:

From: annalynne chronicpain-cpt8778@lists.careplace.com
Date: 2008/04/25 Fri AM 07:15:18 CDT
To: msboosting@windstream.net
Subject: Re: [chronicpain] To Everyone that has suffered from Pain

#8

Lynne
Thank you for such a caring post.
I’m sorry to hear of your surgery which is causing a long recovery back to doing the things you love. I am sure you will get there, the body however ill still reaches amazing feats. You seem like the kind of person that just never gives up, thats something to truely admire.
Thank you also for your help in giving me some of the things that have helped you along the way. I too have been on a completely organic diet, since before even the IC. I much prefer to leave the chemicals in science labs. My uro has deemed me under the cases in which diet just doesnt seem to matter any. Oh I’m sure if I drank cranberry juice, ate bananas and chocolate I’d be in a worse state…but the rest doesnt seem to effect me one way or the other. I guess thats what makes IC so complex and almost funny. I must have spent a whole year just making food my priority. Take away this…add that…Fun!!
But I am so happy to hear that the IC diet has made such a huge difference in your everyday life. Thats great! I’m sure your diet will also help a great deal in healing your body after surgery and getting you back to running. A marothon for anyone is quite a feat but with IC its truely inspiring!
I have not heard of that stem cell thing you mentioned. Thats really interesting, I’ll have to look that up. I’m surprised my uro never mentioned anything when I recently had an endless run down of tests for a suspected auto-immune condition.
I’ve lucked out to stumble upon the greatest docs who do all they can with such little treatment available, so maybe I’ll have to help lead the way on this avenue! He is waiting for something new to come along as he refuses to remove my bladder under any circumatance which is good for me to know. But I count my blessings that he is one of the best IC docs in my area! A bit of fate to live so close to him!
My pain is a combination of IC and endometriosis(and occassionaly IBS) But they cant remove the endometriosis because of where it is and they will not give any type of hystorectomy because “I’m too young” That has left me with only disgusting hormones which put me in a chemical menapouse. After two of those I refused anymore. The hormones destroyed my body and the added pain from endo became a better option than ruining my body further (besides how many times should I go through menapaouse before the real one, theres a reason each woman only experiences one a lifetime, at least I’ll know just what to expect now!) Besides being a newlywed at the time I put my husband through absolute hell…poor guy, he’ll never be the same!
Anyhow, enough of my babbling I think I just wrote part of my memoirs!
It would be great to add you to my friend list to better keep in touch.
I hope you are staying well and enjoying the warmth of spring!
Light and Love
Avalon

#9

Lynne,
God bless you and your journey with this awful dis-ease!! I have had
scleroderma and RA for 24 years and recently suffered a collapse lung due to
pulmonary fibrosis. Doc’s have told me I would need a lung transplant in 2
years (they do their best) but I have started on the herbal/holistic
approach with a whole foods diet…paying attention to acid and alkaline
and eating for the seasons. I’m still pretty new at this but I want to
thank you for putting your message out there. It has been an amazing
transformation for me as well. I, too went through the extremes of
releasing the toxins with the increased inflammation and pain but it has all
been well worth it. I have spent years expecting my body to figure out what
to do with all of the chemicals I have fed it so I realize it will take a
while to get it all re-adjusted so to say…but it sure has made a huge
difference!! My mucus has decreased tremendously thus making it much easier
to breathe on my own and my stamina has increased as well. I have since
been taken off the transplant list!! May God Bless you in your fight with
your current symptoms. I pray you will be up and running again!!
Take Care,
Kim

-----Original Message-----
From: annalynne [mailto:chronicpain-cpt8778@lists.careplace.com]
Sent: Friday, April 25, 2008 8:03 PM
To: self2710@comcast.net
Subject: Re: [chronicpain] To Everyone that has suffered from Pain

#10

Avalon, I need to correct you in a couple of things, just to be clear. Most important are the treatments and causes I mentions re IC. First though, let me correct this: My brain surgery was in 2005, so I’m not recovering, but dealing with the return of pre-surgery symptoms as well as new problems related to the conditions that led to surgery and problems resulting from surgery. I have many other things going on with my health to include Ehlers Danlo’s, mast cell disease, chronic deficiencies of iron, b12, vit d and folic acid, cranial settling, retro-odontoid pannus, external hydrocephalus, ligament pressing into my brainstem, cervical instability, and on and on…

The important things to correct here are: I didn’t say STEM cell… but MAST cell… very important difference if you’re going to look for more information. Mast cell disease is rare and most docs don’t know a lot about it. Some never heard of it, but more and more now they have. A urologist and urogynocologist ought to know about it, but might not suggest it, as even with a clear cut diagnosis, I have many docs refuse to accept I have it… just because its rare. But I have leading experts in the field who have diagnosed me and most of my docs now have seen it by my reactions to various things, etc.

As for diet, I am not on an IC diet. Also, organic alone is not sufficient. I am on an all organic, also all natural (organic is not necessarily natural and not always healthy depending on processing and so on), and mostly raw whole vegetarian/vegan foods with only about 20 percent of intake cooked, and for the first 6 months or so, only distilled water for drinking, cooking and making any beverages. After that, you need to add back minerals, so artesian water or mineral water of you can find it non carbonated. Or you can buy mineralized distilled water at the website I included below. No caffeine, (although I have been able to add back organic coffee without a problem for myself), no meats. no dairy, no peanuts or peanut butter. Also, avoid microwaving, and avoid plastics to store your foods in. I’ve thrown out all of my plastic containers and use only glass or stoneware now. Just save wide mouthed jars from foods you buy and use them instead and try to get your water in glass rather than plastic. If you filter your own water in a Brita or other plastic pitcher, pour it right away into a glass pitcher to store. Use glass, iron or steel pans only or stoneware. No nonstick or aluminum. And exercise on whatever level you can manage is very important, as the increased oxygen in your system from increased activity helps clear the toxins from your body and maintain cellular health. (I have fibromyalgia, but with the organics and exercise, I don’t get sore anymore from working out, etc., even lifting weights, like I once did… at least I didn’t when I was able to keep up this routine… my brain problems inhibit exercise at all right now and so many other health problems are returning as a result). Expect that you might feel worse in the beginning as you detoxify. It takes commitment. I used the Hallelujah Diet at Hallelujahacres.com to get started. I stuck to it like glue because I truly wanted to know if it could help and if I didn’t follow it as designed, I knew I could never know for sure. Once I got it down, after about a year, I slowly made some changes to fit my needs/desires. Once I was detoxed, I could easily tell if anything new I added or changed was going to be a problem. I could also see that anytime I was away and unable to stick to organic health foods, it would only take a matter of a few days for symptoms of illness to begin to show up. I got off of all kinds of meds I had been on for more than 20 years. So people would say, isn’t that a very expensive diet? yes, but cheaper than the co-pays I was spending on meds and doctors every month, and I’d much prefer to spend them on healthy things to put in my body and actually feel better, than on meds that add new problems in the form of side effects.
Best wishes,
Lynne
----- Original Message -----
From: Avalonmailto:chronicpain-cpt8778@lists.careplace.com
To: annalynne3360@msn.commailto:annalynne3360@msn.com
Sent: Saturday, April 26, 2008 3:34 AM
Subject: Re: [chronicpain] To Everyone that has suffered from Pain

#11

Hi All,

I just came across this topic and wanted to let you all know that no matter what causes your pain you do belong here. I suffer from I.C. and some days I just can’t deal with it. I have tried almost everything possible for this awful condiditon. There are So many of us out there and really no place to express ourselves about our condition. It takes a lot of strength to get through the day and no one really understands the chronic pain we have to deal with.

I was wondering if anyone has heard of using Botox to help with the frequency connected with I.C. besides the pain?? My Dr wants to try the Botox on me but I feel like a guinea pig at this time?? I try to keep the pain at bay but realize that I do need to exercise on the days I feel up to it. I find if I try to exercise while my bladder is inflammed I really pay big time!!

There needs to be a place for us to vent since our family and friends do not understand our frustrations when we are in pain.
This site should make everyone who lives with constant pain to be welcomed and given lots of hugs!! Understanding is a big help for anyone who had no one else to talk to.

Hope everyone is doing better and try to keep your sense of humor about all this since this is the only thing that has kepted me sane!!
Bye,
Rose

#12

Hello Rose, WELCOME and I am glad to see that more and more people are joining with all types of illness and IC has just been brought to the Careplace site thanks to Avalon! I have been chatting with her and she wasn’t very welcomed here at first, but thank goodness she spoke her mind and let people here on careplace know about it! I told her the first time I posted that she is so very welcome here and that there are people out here that might have IC, and can relate to her and the suffering she is going through! WOW friends make such a difference in the way we can feel and talk about Anything! Ok Kudos to Avalon, You, and (ouch-forgot the other new person’s name) so Avalon we as a team can find all kinds of friends here! This makes me feel really good that you and others are reaching out with the IC/Chronic Pain and everything that goes with OUR diseases! Here is to you Big Hugs and Love for a pain free day :slight_smile: With all my Love, Mrs Barb/aka Barb :slight_smile:

From: carezeb chronicpain-cpt8778@lists.careplace.com
Date: 2008/04/26 Sat PM 09:13:08 CDT
To: msboosting@windstream.net
Subject: Re: [chronicpain] To Everyone that has suffered from Pain

#13

Avalon Avalon there is another one on Careplace that is suffering from IC, yeah I can’t say enough about Careplace and the Caring Friends! I just wanted to share my excitement with you as more and more post are coming out…See hon we all do care and want to share our hurts/pains/confusions/venting/excitements/friendships, and most important our support, hugs and LOVE!!! Have a great night and a pain free one as well…With all my Love, Barb :slight_smile:

From: Avalon chronicpain-cpt8778@lists.careplace.com
Date: 2008/04/25 Fri AM 03:54:19 CDT
To: msboosting@windstream.net
Subject: [chronicpain] To Everyone that has suffered from Pain

#14

This is so great!
carezeb, its so great to meet you!
I can identify 100% with where your coming from. Its a very hard condition to cope with, with few places to get support. But I’m so glad you are all here.
I have heard a few things about getting botox in the bladder. A few have said it has helped them for a bit and others have said that it was more trouble than its worth(just like every treatment for IC can be) and I think you have to keep getting them over and over once they wear off(dont qoute me on that though)
My doc and I decided it wasnt for me and tried the different kinds of bladdder installments. My doc treated this woman who was bed bound for years and he finally decided to try the Heparine installments with her. 7 months later, the woman was out of bed and going out everyday!
They didnt work for me, but if you havent tried them yet, thats another idea to keep in mind.
If you decide to try the Botox, I’d be interested to hear about how it goes.
Hopefully I can get my profile up and running again, I had to change email adress and change my account here right along with it…sighing computers are so frusterating.
I hope we can all get to know each other better.
I hope you are a having a good night carezeb and can find something to help the pain a little better
Many hugs
Avalon

#15

Thank you, and I hope you too are having a great weekend.
Blessings,
Lynne
----- Original Message -----
From: Mrs Barbmailto:chronicpain-cpt8778@lists.careplace.com
To: annalynne3360@msn.commailto:annalynne3360@msn.com
Sent: Saturday, April 26, 2008 12:27 AM
Subject: Re: [chronicpain] To Everyone that has suffered from Pain

#16

Hallelujahacres.com
----- Original Message -----
From: Yveymailto:chronicpain-cpt8778@lists.careplace.com
To: annalynne3360@msn.commailto:annalynne3360@msn.com
Sent: Monday, April 28, 2008 6:45 PM
Subject: Re: [chronicpain] To Everyone that has suffered from Pain

#17

Lynne
I thank you for clearing those things up for me. Because I have never heard of Mast Cell Disease, when writting a reply I must have just typed stem cell since my brain was familiar with it.

I do appriciate your lifestyle and diet. And I did assume you followed an IC eating plan,

But honestly, I’m not really sure what you were trying to say when you told me the organic diet I had mentioned previously was insufficient. Not sufficient enough for what… maintaining good health? curing someone of all ailments?

Lets not kid ourselves, we are both on a health forum with health problems. I truely mean no offense but it looks like neither of our lifestyle choices have been “sufficient” enough to keep us completely healthy. Eating as healthy as possible and getting as much exersice as you can is great at keeping the immune sysytem in good working condition and repairing damage that has been previously done through bad food and lifestyle choices.
I’m sure you have been able to get off of many perscription medications you have needed in the past and I’m sure you can even atribute some of those to the good choices you have made for yourself. But the last time I checked no one here is in any position or has any right to tell anyone which personal choices are sufficient or insufficient.

#18

Lynne,
I just checked out your link…WOW!! How exciting is that? You’ve done the diet? I feel like I’m searching constantly for info on THIS subject…organic/ whole foods…the connection to God. I’m getting ready to order some stuff. I have an issue with food prepartion, do you find the foods on the site to be good? How about the recipes? Did you take the actual course. Sorry to bombard you with questions!! I currently am on the supplement track so I think I’m good there but I DO have a problem with my food. I do not really get hungry because with scleroderma the digestive tract is “slow” so I have a tendancy to “graze” throughout the day. Because I am oxygen 24/7 excercise can sometimes be difficult and it has been suggested that I pick up a “rebounder” as you know; for the lymphatic system. Thank you for the link!! You have answered m prayers!! You oughta see all of the books and info I have collected trying to find something like this site.
Take Care!!
God Bless…
Kim

#19

To Lynne and Kim, The link sounds wonderful. Would you please send
me the LINK? I would appreciate it very much. my email is:
kay1958@gmail.com
Thank you, Yvey

On 4/28/08, sazmastr chronicpain-cpt8778@lists.careplace.com wrote:

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Lynne,
I just checked out your link…WOW!! How exciting is that? You’ve done
the diet? I feel like I’m searching constantly for info on THIS
subject…organic/ whole foods…the connection to God. I’m getting ready
to order some stuff. I have an issue with food prepartion, do you find the
foods on the site to be good? How about the recipes? Did you take the
actual course. Sorry to bombard you with questions!! I currently am on the
supplement track so I think I’m good there but I DO have a problem with my
food. I do not really get hungry because with scleroderma the digestive
tract is “slow” so I have a tendancy to “graze” throughout the day. Because
I am oxygen 24/7 excercise can sometimes be difficult and it has been
suggested that I pick up a “rebounder” as you know; for the lymphatic
system. Thank you for the link!! You have answered m prayers!! You oughta
see all of the books and info I have collected trying to find something like
this site.
Take Care!!
God Bless…
Kim

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