Fibromyalgia

Posted on: Thu, Feb 28 2008 4:54 PM

Posted by: iluvmyhorse Posts: 20

Hello to all who have responded to me.  You do not know how much just talking with you has helped.  My doctor never seemed to listen to me, but the inspiration you all have given me, gave me the nerve to go to him on the 27th, which was yesterday, and demand some help.  He is now sending me to a rhumetologist for treatment of my fibro.  He is also sending me to an ear, nose, and throat specialist, because I have been having some serious trouble with my left ear for almost 2 years.  My doc said at first I had and ear infection.  "NOT".  For 2 years?  Noway.  He gave me Penicillan, but to no avail.  My ear drum seems to have perforated, and thickened, and my lymph node on that side is enlarged and swollen.  I don't know if this is another symptom of fibro, but it kind of scares me. 

Anyway, I'll keep everyone updated on what the Rhumetologist says and what kind of meds he gives me.  But you can bet your bottom dollar that I will be telling him what I have learned from all of you.  Again, thanks so much for all the strength and inspiration you all have given to me, and please keep me informed on your life with fibro.

I no longer have that defeated feeling, and am looking forward to a better life.

  Luv to all, Tina

Posted on: Fri, Feb 29 2008 2:00 PM

Posted by: kellyanne1 Posts: 40

Hi tina i cant spell so i appol for that,but i suffer with ibs due to my myalgia but i get my pain right under my left rib so i also suffer with server anxiety and panic thinking it could be a heart attack my doc is rubbish and didnt tell me i was suffering with anxiety so i just drank myself stupid to cover up the feeling which made everything worse.this is my very first time talking to anyone who suffers and i hope i can get a better understanding of whats going on with me.but my mum says for the ibs eat bran everyday as that will help and ive also started yoga which helps also.i do suffer as bad as you also with the ibs and the docs are useless with help i think.

Posted on: Fri, Feb 29 2008 8:21 PM

Posted by: iluvmyhorse Posts: 20

HI KELLYANNE.  WHICH TYPE OF IBS DO YOU SUFFER FROM?  THE CHRONIC DIHARREAH, OR THE CONSTIPATION TYPE?  MINE IS THE CHRONIC DIHAREEAH TYPE.  THEY SAY IT'S THE RARE ONE.  i DON'T KNOW, BUT IT MAKES GOING OUTSIDE OF YOUR HOME A SCARY CHALLENGE, EVERYDAY.  MY PAIN, WHEN I HAVE MY ATTACKS IS MOSTLY IN THE LOWER LEFT SIDE OF MY STOMACH. I HAVE TO MASSAGE DOWNWARD, BUT SOMETIMES THE PAIN IS SO BAD (CRAMPING) IT HURTS TO EVEN TOUCH MY STOMACH, BUT I HAVE TO MASSAGE TO MAKE IT MOVE DOWNWARD.  IT IS HORRIBLE, BUT I HAVE LIVED WITH IT SINCE THE YEAR 2000.  IT DOESN'T MATTER WHAT I EAT, IT'S GONNA HAPPEN WHEN IT FEELS LIKE HAPPENING.  ALTHOUGH I HAVE FOUND THAT EATING A LOT OF FIBER, AND TAKING FIBER PILLS HAS HELPED A LOT.  YOU ALSO HAVE TO EAT VERY SMALL PORTIONS OF FOOD AT A TIME.  IF I EAT A BIG MEAL AND GET FULL, WHATCH OUT, CAUSE IT'S GONNA HAPPEN WITHIN THE HOUR. 

I USED TO THINK I WAS ALONE IN THIS, UNTIL I CAME ONTO THIS WEB SITE.  THERE ARE SOOO MANY PEOPLE WHO SUFFER FROM THIS, IT'S CRAZY.  I HAVE ALSO NOTICED THAT IT MOSTLY ATTACKS WOMEN TOO.  SO, IF YOU NEED A FRIEND TO TALK TO ABOUT IT, PLEASE FEEL FREE TO TALK TO ME.  MEETING PEOPLE LIKE US ONTHIS WEB SITE HAS ACTUALLY HELPED ME BECOME STRONGER, AND MORE AGGRESIVE IN MY FIGHT AGAINST IT. 

GOTTA GO FOR NOW, BUT PLEASE KEEP IN TOUCH.                 tINA

Posted on: Sat, Mar 1 2008 8:47 AM

Posted by: kellyanne1 Posts: 40

Hi tina

i dont know what type of ibs ive got and i dont know how to treat it im going to try eating more bran and have a look to see if i can find other stuff.my yoga defo helps so im going to keep that up,did you get ibs cos of fibro cos i did and i also got a bad gut im always having to burp.you are right though its finaly nice to be able to speak to people also suffering the same as you.i hope it gets better for you.thanks

Posted on: Sun, May 4 2008 4:06 PM

Posted by: karendavis Posts: 3

first time on this site.i also have i.b.s. due to fibro my doctor has put me on norimode which has done the trick from the first time of taking the tablets.hope this helps. x

Posted on: Tue, May 6 2008 11:25 AM

Posted by: mysfamu Posts: 67

iluvmyhorse:

really embarassing question

I know this goes against everything i was taught as a child - this subject is taboo!

Thanks for being brave and starting this convo.  Yes, it terribly affects me and it is always random. I have yet to figure out the triggers!

Posted on: Tue, May 6 2008 6:18 PM

Posted by: MaggieRay Posts: 436

Nicely said, Mysfamu!

The only thing the drs would give me when I first came down with Fibromyalgia were anti-inflammatories and if I knew then what I know now about these awful drugs, I would never have taken them in the first place.  I am now on two stomach pills/day and will probably always be from the problems those medications caused.  I cannot digest any amount of food without the stomach pills now, and I also still get terrible stomach pains quite often at night, some time after supper.  Eating a meal has lost it's enjoyment for me as all I wonder while I'm eating is how I will pay for it later!

How do you explain to your family or friends that you can't always follow through with plans because of days when you are running to the bathroom every half hour with diahrrea, or you're so uncomfortable for days from constipation and the last thing you want to do is eat and cause more bloating!  On top of the pain that interferes with our daily lives and plays havoc with any plans to start with, this whole IBS problem just compounds how we suffer with these secrets because no one understands or even wants to hear about it. 

My mother had bowel problems in the last 10 years of her life, and as her only support, I was the one who mostly had to help with cleaning up the messes.  It has left me with a fear of becoming that way as it is so embarassing to have to have someone else deal with your private issues.  As much as my heart went out to her, I also developed a resentment towards her and her problems, which is such a shame because I loved my mother so much.  I would never wish that on anyone and I don't talk much about my own IBS problems due to the shame-based feelings of having to deal with my mother.  I did, however, have to insist on something for the diarrhea finally as it was just getting to be too much for me.  My doctor finally prescribed a good med for the really bad days, which thankfully, have calmed down a lot since then, but at least now I have something to take for it that is effective if I do have to go out that day.  It is called Cholestyramine (in Canada) and is in little powder packets.  This is only to be used for really severe and consisten diarrhea, though, not on a regular basis.  Otherwise, I take Immodium Extra Strength, which for most days now, is effective.

Other days, I have to have "big clothes" like I used to for "period days" because I am so bloated, nothing is comfortable to wear.  Walking is more difficult too as the added pressure just makes my back ache even more.  I hate the whole thing!  I have been off the anti-inflammatories for about 3 years now and the diarrhea is finally starting to settle down, so at least that's hopeful.  Maybe changing my diet has helped somewhat too.  I eat a lot less salt (chips were my favourite) and have cut out most sugar while adding more vegetables and fruits.  That alone has made a difference for me, and I keep trying to eat more healthy as much as I can (with a little cheating here and there, of course!).  I don't know if anyone else also has arthritis, but sugar can be a trigger for the pain.  My girlfriend who has Rheumatoid arthritis (I have Osteo arthritis) swears that every time she eats sugar, her pain flares up.  I have tested this theory and do find it has an effect, which you don't notice until you start eliminating it from your diet.  It is hard to change a lifetime of eating habits, though, so I am slow at making these changes, but I am trying. 

Hope this helps you to know that you are certainly not alone and that we shouldn't have to be ashamed of what is not our fault our under our control.  I'm afraid we have a long ways to go to change that attitude, though. 

Gentle Hugs,

Maggie