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Posted 2/28/2013 4:03 PM (GMT 0)
First off, we ALL know that people without Fibro, really don't have any clue to what its like, right ? We totally understand... heck, almost expect people to not want to listen... or should I say, "not want to hear" about our aches and pains. Just lame human nature I guess.

However, whenever I start talking to somebody about my journey back to health, I always stress that the weight loss / muscle gain has been SOOO small a part of my recovery, compared to knocking down Fibro and IBS !

> And people just seem to pay so much more attention when I'm talking about "how bad it used to be" as opposed "how bad I was, right then and there".

Of course, often X's, they will try to cut in with the, "See ! So, if you could beat Fibro and IBS down, all those people have to do is........."

......which is where I have to interrupt, and tell them, "Well, no. Fibro is different for everybody, and my treatment plan might have less, or no positive effects at all, on the next Fibro person".  

Anyway, in a nut-shell, I just feel like more people listen to me now about Fibro, than they did when I was really suffering with it.

I try to be as good a Fibro ambassador as possible, and I feel like my position might give me a little more attention to get the word out.

Any suggestions on how I can help more ?

Peace,

Fish 

Posted 2/28/2013 6:03 PM (GMT 0)
Great topic, Fish. I really don't have any suggestions. It seems people believe what they want to believe, and yes--it sure is hard if they have never had fibro.

I think, though, that when you come across someone who HAS fibro and needs advice, you are the one to see! It could make a huge difference in their life, if they're willing to listen.

Go get 'em! Best wishes. :)
Posted 2/28/2013 6:51 PM (GMT 0)
My experiance is people are more willing to discuss pain or a health condition after they have a chronic pain condition of their own. When I'm around the "normals", I don't bring up any of my health conditions unless I'm asked.

Coming to the forum, I know people "get it" and I'm more comfortable about discussing things. I do my part in trying to educate family and friends but they are not living in my shoes so I don't expect them to fully understand.

Positive thinking has helped me get through so much and family and friends notice that.

Chris, I think it is great that you have found something that works for you and that you go the extra mile to help others. :)

Hoping everyone finds what works for them!!!

Hugs, Robin
Posted 2/28/2013 6:57 PM (GMT 0)
I don't find this site information restrictive at all. I have learned soooo much from the people here, including advice on many different "products" people have used, from foods to supplements to devices. I've also been directed to other information sites many, many times by other users.

What isn't allowed here is promoting items, devices, information from which you (general) stand to profit. I think the mods and Peter do an excellent job of preventing this site from becoming a spam haven or one long product commercial.

Chris, I appreciate your efforts to share your experiences. We are all different and have different needs, experiences, health issues, etc., but I think you do a great job of sharing what has worked for you.
Posted 3/1/2013 3:27 AM (GMT 0)
Thank you Luvsminis :)

FibroT, to be honest, I was really thinking on a smaller scale :)
Even in person. I actually have two good acquaintances with Fibro who I talk with pretty often. I'm too slow a typer to get out to millions ;) LOL
But no, I'm not selling or promoting anything. Just the idea of LOTS of exercise and a super clean, healthy diet, to hopefully give the next Fibro sufferer some relief, but maybe, a TON of relief like it has for me !

Robin > My experience is people are more willing to discuss pain or a health condition after they have a chronic pain condition of their own. When I'm around the "normals", I don't bring up any of my health conditions unless I'm asked. <

I used to be exactly the same way...
But now, I swear if I hear Fibro mentioned, "Bam ! I'm there ! :) What do you wanna' know ? Yes ! Fibro sucks @$$ ! But then I can and often do, just freely go into how it is believed to be from misfiring nerves, and how any part of your body with nerves can hurt, and how it can hurt, in all different ways, etc, etc.

It's kind of funny the looks some people give me {I guess I'm starting to get a little bit buff / ripped, hard as it is for me to see}, when I tell them, "And yes, I still do have Fibro... I've just kind of kicked its @$$ way down :)...

Oh... theirs my AADD again ;)

Thanks to you too Austen :)

Peace,
Fish
Posted 3/1/2013 5:59 AM (GMT 0)
Fish, I'm the same way - I'll talk about it as long as people are interested....it is a very confounding condition we live with and it affects us to our bone marrow - so why act like it doesn't? Of course, they're usually not interested for very long, but that's another matter...I applaud your desire to educate people.

Terry, this site doesn't "try to restrict information or prevent site visitors from going anywhere else for information" (how would that work, anyway? - it's a great big internet out there!) As Austen said, what's not allowed is promoting something from which YOU would benefit...we often talk, very specifically, about products that have helped us, from heating pads, to exercise equipment and tapes, to supplements - their cost, where they're available, etc. So I'm a little confused as to why you would get the impression that you did.

Debbie
Posted 3/3/2013 11:59 PM (GMT 0)
Please share, how did you alleviate the pain and other issues with fibro and you really got rid of ibs? I'm new to this forum so I'm not sure if folks check back on their posts?
I thought we've been conditioned to believe that there are good times and bad flare up times...its just our lot in life~it not a lot but it's our life;o)
Posted 3/4/2013 7:03 AM (GMT 0)
Kova, first off, welcome :) You have stumbled upon a place where "everyone" KNOWS how you feel.

How have I nearly knocked out Fibro ? ... and totally IBS ?

{disclaimer: Fibro is different for everybody, so what works for me, might not work as well, or at all for you... of course you won't know if you don't try it :)} Well, all of the regulars here have heard me tell it so many X's, their probably tired of hearing me :) LOL But in a nut-shell, diet and exercise. Sounds too simple, right ? But to be honest, my diet and exercise regime is pretty extreme.

But without a search function or "my posts" feature, I can't even find one of my "novels" here, myself :(

If you give me a little, I'll find my whole fitness plan spelled out, and link you to it :)
`````````````````

BTW, how old are you ? And do you have any other issues such as spinal issues, or rheumatoid arthitis ? Or just Fibro and IBS ?

Peace,
Fish

Posted 3/4/2013 10:42 AM (GMT 0)
Hi Fish,

You always bring up such interesting topics. First of all, how to describe fibro pain...

Before fibro we sometimes would experience a localized pain, fibro is much more than that. My fiance had the flu over the weekend. He told me he felt like he had been run over by a truck. He was sore all over. That's what fibro feels like in different degrees of pain and it almost never goes away to me. Then what also goes along with the flu is weakness and fatigue. That's what fibro feels like to me. If I eat the wrong food, I have more trouble breathing through my lungs, then I feel even weaker. This happened to me last week when I had a squeezed a piece of lemon on my fish. Lemon doesn't agree with me.

Fish, that's great you can exercise hard but there are those of us who also have spinal injuries who can't do that, so we need to remind others that we all can't do what you do. Some of us have to really listen to our bodies and not push our bodies too hard. It's great that you can.

Pushing too hard sends me into a flare. I carefully lifted a pot of chicken soup the other day and I suffered for it the remainder of the day.

IBS, I'm not sure if I have this but if I don't eat right I have issues. I certainly need to eat enough fiber every day and drink plenty of water.

Finally, Fish, there are some people who are not fibromites who would rather not hear about or talk to a person who is dealing (suffering) with pain or health conditions. Maybe because this scares them a bit, that something like this could happen to them? So perhaps this is why they are listening to you now?

One last question, what is AADD? Would that be ADD?

Keep up the good work.

Posted 3/4/2013 6:04 PM (GMT 0)
Thank you Almost :)

Yes, your right about spinal conditions, and other physical limitations which might prevent a lot of exercise. That's why I asked the OP about anything like this in my last post.

I have to say though, when I first started lifting weights {in spite of the fact that my IBS was already getting much better} my body was in all kinds of shock ! I had so many aches and pains.... and I honestly didn't know if some of them were from my Fibro, or just being an old guy, trying to work out again.
But as I have said many X's, for me, causing soreness to my body from actual hard workouts, seemed to distract my Fibro, from making up "phantom" pains of its own.


ADD = Attention Deficit Disorder
AADD = Adult Attention Deficit Disorder
ADHD = Attention Deficit Hyperactive Disorder.

Funny you should mention this.... I just saw a thing this morning where a study showed that adults with ADD, have at least 1 or more other pshychological disorders, 80% of the time ! I guess I'm no exception to this , with my OCD, Body Dysmorphia, etc...

Peace,
Fish
Posted 3/4/2013 8:50 PM (GMT 0)
Hi Fish,

You're welcome. Sorry to hear you have AADD. Fish, I know you've mentioned how healthy you eat. I'd be interested to know if you follow a diet for your AADD like what is listed in the following article:

http://www.webmd.com/add-adhd/guide/adhd-diets

Have you ever watched the TV show Super Nanny? Sometimes I wonder if the troublesome children's diets play a big part in their behavior issues.


Thanks!

Posted 3/4/2013 9:04 PM (GMT 0)
Everybody has to find their own happy place.

Since dx, I have tried several times to do weight machines. It simply causes too much pain for me. Basic cardio usually can work. I have problems with my knees, legs, and back when on a treadmill. I prefer using an elliptical, though I haven't for a while due to additial dxes recently. I used to start at a modest easy set for about half an hour, and worked up from there.

I prefer my aqua work, and generally will do an hour in the pool. I try to get in the water 3-4 times a week.
Posted 3/5/2013 2:44 AM (GMT 0)
Almost, thank you very much for that link :)

Ha ! Well I guess my diet is almost spot on to what is considered the healthiest diet for ADHD :) And I never knew :)

Only things on that entire list that I don't eat, are beans... and I might, just never seem to consider them, and cheese... I eat zero dairy.

Myself, I totally agree... I just wish I could find mine :)
BTW, just curious... have you ever gone extreme with your diet ? The reason I ask, is that I totally hear you about working out with full blown fibro... I could barely drag myself through a day, let alone lift weights when I got home.
For me anyway, I needed a good 7 or 8 months just to get my diet cleaned up, and straightened out. That gave me major relief from at least my IBS. Which in itself, was enough for me to start doing some cardio.... then weightlifting, etc, and the better shape I got in, the more my Fibro symptoms fell away.
BTW Myself, does enteropathic arthritis cause actual tissue and / or nerve damage, or is this like the Fibro version of it ? .... hurt like heck, and Dr's can see nothing ?

Oh, and I have had Ankylosing Spondylitis too, and doesn't that just suck arse ? :( That's another one of the more serious Fibro side's that I just don't get anymore at all...

Peace,
Fish
Posted 3/5/2013 4:08 PM (GMT 0)
The IBDs cause the arthritis and SA.

Since dxed with crohns I have had to find the eating style I can handle, since specific foods cause flares.

I did a food diary for a month and made several discoveries about what y body prefers.

Small servings moreoften. Dairy is not a problem. Gluten is not a problem, thpugh less processed wheats are. Like heartier grains-ouch. Beans are out as are spices. Any raw veggie is out. Cooked veg in moderation, cut very small. Nofried, no grease. Nopeppers, of any kind.

Several different diets are indicated for crohns... I preferred to discover whatspecifically was going on with my body rather than
go through trial and error with other pubblished diets.

Sorry about the typos-on tablet, andno time tofix.
Posted 3/5/2013 6:41 PM (GMT 0)
Thank you Myself... but again (important) is your Arthritis of a type which causes actual physical damage to your joints / tissues / nerves ?

Yea'..... Crohns makes it tough :( I thought for a while, I might have Crohns.

In any case, my diet has just changed so much since the old days, I really don't know which part of it helped to eliminate my IBS symptoms....
But whatever it was, I'm not planning any drastic changes in my diet, anytime soon.

Peace,
Fish
Posted 3/6/2013 5:40 PM (GMT 0)
Yes, it is. I have had ulcerative colitis since 2003, and likely crohn's since at least 2010. I just kept putting off my supposedly yearly colonoscopy.... For alot of reasons. also, I was writing off the pain as fibro, when in actuality it was fibro and ibds, and their resultant other body issues.

Both rheumie and gastro want to start me on one of the new biologics, like remicade or humira. I am hesitant, due to the side effects of lowering the immune system. But, we do need to act in
order to keep damage from spreading.

Just got back from an hour in the pool. To each their own brand of exercise and diet, according to their needs.
Posted 3/7/2013 2:50 AM (GMT 0)
Myself, an hour in a pool would kick my arse ;)

Well hey now... you still have to listen to me holler about diet :) LOL

You mentioned IBDS ? Same as IBS ? If so, I'm telling you.... my digestion issues were as messed up as it gets.... and got worse for 20 years !

And I believe my diet (not exercise) had 90% to do with knocking my IBS into remission.

Anyway, I hope you know {because I know I can be a pain in the arse ;)} that I really just want you, and every other person on this forum to feel better !

Peace,

Fish

 

Posted 3/7/2013 6:50 AM (GMT 0)
Ibs is when food, stress afflict the digestive process. Ibds are when there is a disease in the system. Ulcerative colitis, ulcers in the colon, crohns, ulcers in the small intestine, and celiac. They can be minimal, moderate, or severe. Since uc is lower in the whole process, food rarely trips it, but ulcers in the rectum are no fun. Crohns, higher up in the process, gets psrtially digested food, and thus can be affected by food, causing ulcers, fistulas, etc. Many people get malnourished, because their body isn't getting tbe nutrients

Gas, bloating, urgency, diarrhea or constipation, serious pain, blood, mucus, lack of energy, etc. All with different sources, and different treatments. Medicines, mostly, to help soothe the ulcers. Some people have to get thr diseased part of their bowel removed. Diagnosed by a colonoscopy, and checked yearly.

For many of us, figuring out the health puzzle isn't easy, and it isn't quick. I am happy that you have a solution which makes you feel better, because that's this is all about.

I am beginning to wondr if the arthritis, linked to ibd, hasn't been a huge contributing factor, overlooked due to fibro. My skin has also started flaming more, and my eyes, more goodies linked to ibd. In fact, whenever I get an infection, eyes, gums, skin, and bowel, and even reproductive areas, everyone jumps on the infected train. And, even if I get the crohns uc to go into remission, the arthritis and sa stick around.

Now i'm getting cranky about it. Time for bed.
Posted 3/7/2013 8:57 AM (GMT 0)
Myself, arthritis goes with Crohn's, too. I have had what they call Crohn's arthritis for years. I also get iritis of my eyes. My opthamologist has me keep prednisone eye drops at home so I can nip it in the bud when I start to get one. You can lose your vision with that if not treated. But you would know it because it looks almost like pink eye and it looks like you are in a snowstorm when you see.

Sherrine
Posted 3/7/2013 4:14 PM (GMT 0)
Yes, I had a rheumie up in NWPA when I lived there five years ago. Anyway, he was convinced that crohns arthritis was part of the problem. It kinda fell off my radar when I moved and life got seriously complicated.

It is a huge problem with me, I think. I try to keep work issues front and center. My medical issues often get short shrift, aside from the basics of sleep and exercise. There is only so much time in the day, which sounds like a rotten excuse. I am finding it harder to try to manage it on my own.
Posted 3/7/2013 4:40 PM (GMT 0)
Myself > but ulcers in the rectum are no fun < You ain't freaking lying !!! Truer words have never been spoken !

Ya' know, "most" of my Fibro and related issues, were of the "hurts like hell, but no visible damage" category. However, I dealt with those ulcers you speak of for SOO many years ! Actually went to the Dr' for it once, when they were particularly bad, and bleeding, and even the Dr. said..... "Ewww... that looks pretty painful" :(
People whine and cry about hemorrhoids. Ha ! Hemorrhoids have NOTHING on ulcers in the rectum !

I use to always just tell those around me > My stomach is killing me...... Because people might kind of freak out if you told them, my rectum looks {and feels} like bleeding hamburger !

Myself, I have some really important stuff to chat with you about.... maybe one day, I might even talk about this here.... but it has to do with a treatment for rectal ulcers {extremely personal.... but in case anyone was wondering, I am a straight male :)}. I saw your e-mail is not listed, but I REALLY need to tell you about this.... If it helps you too, then maybe you can back me when I do bring it up here.

[email protected]

Peace,

Fish

PS, Anyone else with ulcers of the rectum can e-mail me too.... But I'm terrible about checking my e-mail. So if you send me one, please let me know here, and put something in the subject line that I won't miss.

Oh, and BTW, just to peak your curiosity, my treatment of ulcers of the rectum was very effective (75% relief ?)  > even like 12 or 14 years ago, when I first started it > LONG before I actually knocked ALL of my Fibro and related issues way down, with my whole diet and exercise regime.

Oh..... and I have a buddy with Fibro + rectal ulcers, who (last I talked to him) was fixing to start this treatment. Will try to talk with him soon to see how this is going.

 

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