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confused and scared
12 Replies
cokama - May 21

have just recently found out have fibro which has thrown me a lot, also add to that severe ibs and have now been put on a gluten free & lactocse free it normal to take a while to get your head around all this? So hard also trying to explain to friends what is wrong with you. Would love some advice.


axxie - May 21

Welcome cokama

To answer your questions about getting your head around this, yes, in fact is hard and difficult at best.

Don't despair, you will see that with proper medication and nutrition you should see, good days. You will learn what foods help and which don't and once you start feeling well.

It's very hard to explain to your friends and family that there is something wrong with you, when you look good. The reality is, most don't understand because they don't have it. But you can help them understand that you need friends who will without question support you through these hard times.

I hope your doctor has put you on medication to help you cope with your pain and sleep.

I found that you have to remain calm, because as soon as you get nervous you start feeling that your body is not responding well to you.

Don't forget you can almost everything, except you have to do it in a slower matter.

Good luck to you and welcome to this board, please post questions and replies, this is how we all learn from one another.


cokama - May 21

thankyou for that wonderful reply it does feel good joining a forum whee can talk to other people going through the same thing. Was trying to get meds sorted, and are seeing a dietican about what foods good etc only thing now is I have just found out I am pregnant so stopping all meds asap just going to focus on vitamins, keeping active and eating well, i dont know of anything else i can do :)


axxie - May 21

Congratulation cokama

First thing is see your doctor and tell him that you are pregnant and how best stop the meds. I am hoping you will go in remission while pregnant, that would give you a positive outlook on living.

As for the diet, eat normally and just beware to not overload on meats, milk, artificial flavors and coloring, and stay away from anything that has sugar and acidity foods (vinegars, soya sauce). Drink lots of water there is nothing wrong with water and take a materna multivitamin, good for mommy and baby.

Likely you will need to drink milk, try the 1% or 2% milk, unless the doctor tells you that you need to drink whole milk, I would stay away from any fats.

Sleep well and take walks and enjoy your new found peanut that is groing.

Good luck and keep me posted.

Take care


cokama - May 22

thankyou so good to be able to talk to someone where you dont have to explain everything all the time and they still look at you with confused look ha. Its hard i feel like such a hypocondriate (cant spell ha) everyday can be something different that hurts etc ha. I'm not feeling to sore at mo which is great so hoping that will stay that way, am just having few troubles with dizziness. I also four other kids ranging from 12 to 6 so def going to be a new challenge but they also great kids so will help when needed. I should ask about you and how you are? It sounds like you have been going through fibro for a while? Hope you well, talk again soon :)


axxie - May 22

Hey cokama

Thanks for replying, yes, indeed it's fun not to explain.

I'm a mommy too, my only one, miss princess she's 16 and very busy social calendar. She laughs' at me sometimes, because I can't talk.... she's a great kid and helps me when I ask. She perticular likes it, when I ask her to run errands with my car. She feels all grown up. She's a great kid.

I can't spell either, and at best, I can't cook, and can't do much some days, other days I'm able to be more normal.

This week as been pin and needles in my arms and leg, and tonight ibs, my fault, I ate a piece of cheeze that I could not resist and I'm lactose intollerent.

Talk to you soon :)


cokama - May 22

oh you poor thing i can totally relate to wanting to eat things and thinking ah this time just once i'll be alrite but usualy those times that end up making us suffer ah. Hope you have some good medication to help settle your stomach. I'm lucky in the respect that my mother has coeliac disease so at least I know how to follow the gluten free side of things, but the lactose thing I cheat bit with i love chocolate too much ha.
Sounds like you have a great kid which would be huge help..hope you feel better soon you can message me anytime if need to vent I'll try get back when can :)


jerrybaby - June 4

cokama, my best advice in dealing with the people around you... email them a link explaining what it is you suffer with. I finally started doing that and now they have more of an idea what I am going through. The wikipedia link is a good one..
Hope that helps!! Good luck with your pregnancy. :)


newbie09 - June 7

Good advice jerrybaby
I was going to suggest printing out some information from the internet. There are specific details for people like your 'employer' and 'family' and OH.

Obviously make sure the website is at the bottome in case they are interested to know more..x


jerrybaby - June 8

Yes it takes a while to wrap your head around it. When it comes to friends, I have sent them the wikipedia link that explains a lot of what I am going through.
It is a very hard disease to explain because we don't really understand how we got it.
I myself have learned to live with it and thank god everyday, because it could be a lot worse. ie... something that can either kill me or be degenerative. What medication have you been prescribed? I luckily was prescribed Cymbalta right away and it has worked for me. I have had fibro for 2 years and Cymbalta has really made a difference. It doesn't work the same for everybody, but for me it has been great. If you need anything else or have any more questions.. just give me a shout. Good luck.


jerrybaby - June 8

p.s... sorry didn't realize I had already posted here.. fibrofog!! I have a bad memory nowadays!!


fibromama - June 8

Hi there!My mom has fibro and it scares the you know what out of her.She says that she feels like there is something deathly wrong with her...literally.She has been made aware of this two years ago and she is still learning about all the symptoms and things that go on in the body of someone with FM.My only advice would be to remain a member of forums for FM.That is where I find a lot of info and support for my mom that helps her not be so scared.


prescott.norco - June 12

To control the pain we must attend to the specialist because we can give him what is appropriate and what we need, for example I take hydrocodone, vicodin which is medicine used to counter the chronic pain that I have for years, but I rioja prescribing doctor, I take it in moderation because I read in findrxonline which is a medicine that causes anxiety, and we must control it as it can affect your nervous system, so do not take medicines without consultation because it really can be dangerous.



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