hi every one im new here so would just like to introduce myself im nicole i am 20 years old and being reassed for fibro as after looking at the stymptons it is spot on please excusse my spelling im am also dislexsic :/ and get embarssed easily i dont really now much about fribo i always get asked what it is so one question is what does every one call it e.g is it somthing to do with my nerves ?
any more infomation would be great as i feel so alone when im in pain and people dont understand thanks for reading Nicole x
You have come to the right place! Welcome! And please, don't apologize for personal differences, they're what make us special!
As a new-ish member, too, I just want to tell you keep reading blogs. You don't even have to read all of them to find out tremendous amounts about what many of us call "fibro" and what I call it on a bad day - L'Beastfibro".
Hi Nicole and a warm welcome. You've come to the right place - for support, empathy, understanding and heaps of good advice and information. I have a sister and a nephew with fibro and they are both also dyslexic. We all seem to have more than just fibro so you have to wonder if it is a cause or result affliction! Maybe one day, research will give us an answer.
Howdy Nicole :o)
I’m new too and I’ve already found a wealth of information. It’s such a blessing knowing there are people out there that understand. Just keep reading posts and learning. The more I learn, the less alone I feel.
Blessings,
Tee
Lovely to have you with us and don't worry one bit about your dislexsic as no one is perfect in life and the amount of cockups i make through wearing gloves through my raynauds i get sick and tied of editing.
Nicole have bloods been run on you regarding ANA and ENA beside DNA testing?... because although you may think it's fibro, there's another two autoimmune diseases identical in symptoms Lupus and Lyme disease.
I'm sorry you need to be here but there are a lot of very nice people here to help you. We'll try to support you through the rough times and give you information so you can make more sense of this illness.
I found this explanation of fibro from the makers of Lyrica and it echoes what my rheumatologist told me:
"Our muscles are connected to nerves. Nerves throughout the body and spinal cord send messages to the brain. It is believed that people with fibromyalgia have changes in the central nervous system (brain, spinal cord, and nerves) that result in overactive nerves. The changes may be responsible for the chronic widespread pain and tenderness of fibromyalgia. It is believed that people with fibromyalgia have overactive nerves, which may be responsible for the chronic all-over pain and tenderness of fibromyalgia."
I found some interesting fibro articles that are easy to understand and written in a way that a fibro person would comprehend:
You can find other interesting fibro articles by the same author by clicking on her name or the subjects listed prior to the article.
I hope this helps for a start. Feel free to ask as many questions as you want. After all, we're all probably suffering from and wondering the same thing!
There are many definitons of Fibromylagia, depending where you look or who you talk to. Here is one definiton for you.
Nice to have you in the group, sorry about you having this! A good Rheumatologist is your best bet as far as a Dr. They seem to be better trained in Fibro.
Big hugs,
SK
PS, with all the brain fog we have, most of the time we can't remember how to spell 'cat'! We are all pretty good at deciphering each others posts, so no worries! Even an old dog like me is learning text code! I don't text, I just talk! LOL! These large keys are difficult enough for me to use!
Hi Nicole,
I’m so glad to see that you have added a discussion, learning about fibro is an ongoing process, we are all always trying to figure things out, but your question is a good one, I think Petunia ans it well.
Please don’t ever be embarrassed we all have similar as well as different issues
thanks for all this informaion so far i am glad that i know have a place i can go to where peope understand me where my parter dosent how has every one eles got there family to understand as even my mum and dad dont :/ tez 20 i have had many blood test and no thing has been said like that but iv got a new doc so having them again just to double check thank you though :)
Your welcome from we all and it's lovely when you have good friends you can turn to in situations...sometimes people close to us don't understand because they're hidden diseases, which can go against us straight away besides needing consideration from those close to we.
I've got Lupus nicole and was born with it, so all my bloods came in positive but Lupus loves messing bloods about and fluctuating them giving off false reading...so when you see your new doctor ask for bloods to be done for Lupus to make double sure.... the bloods to be taken for it are anti-DNA test, an anti-SM test, and also a anti-RNP test. :)
hi there thanks yeh i find it hard when my mum and my dad expect me to carry on and be like them and work though it but i cant and it so fustrating my patner finds it hard to understand aswell also usefull advice with regards to the docs as i never know what im being tested for and they never explain thinsg so having somthing to ask for makes a chance :) and i am needle phobic any tips on how to handle that ? :/
Unfortuantely, you will learn to deal with the needles. They become a big part of your life. It all gets easier. Being informed is your best defense against any illness, knowing what is going on with your body will make it easier to talk to your Doctor. Find out all you can, that way when you have an office visit, you can discuss what is going on with you, and how to treat it.
You have to learn to be you own health advocate, and knowing your disease is the key! then your next job is to educate your loved ones, this is the tough one, but once you know what is going start taking a parent or boyfriend along to the Dr and let them hear what is going on. Just remember, that the Dr only has so much time, and it helps if he doesn't have to 'teach' everytime you are there.
So glad you found us, this is a great group, come to us when you need us. There is usually someone here all hours, if not, just post and it will be answered soon!
Ben's Friends and google should be your new bff's!
thanks yeh hopefully i will learn to not b so scared of needles :/ thanks already feel so much better to be able to talk to people who are going though the same thing i think my partner was getting pissed of with me ranting all the time lol and trying to explane when it difficult one of the people i live with dont belive me but he has a dissablity so i though it was weird when i found this out he is saying that i am playing on it and having every one eles on as one day i can do more than anothers i have now learnt to egnor people like that :)
I used to be needle phobic too, to the extreme. What got me beyond it and other medical phobias was going through the doctor's visit and realizing that the pain from the needle was less than the horror I'd created in my mind. That or you could pretend that your favorite rock or movie star was in the office getting a needle in the bum as you watch. Mentally distracting yourself while getting te shot might help. Also, I always make sure not to look as I'm getting the shot as it hurts worse when I watch.
A lot of family and friends don't understand our illness, Nicole. It's hard even on the supportive ones. It's difficult to imagine that healthy looking people (supposedly) feel so poorly. My sister had Lyme Disease this summer and it's still hard for her to grasp my illness a lot of the time. In the end, we have to let go of trying to please those people and just work on feeling better ourselves. Otherwise we'll seriously stress ourselves and end up even sicker. Those who understand are meant to be in our lives and will enrich us.
Bless you and I hope you find some measures of relief plus some heartfelt understanding from those closest to you.
thank you petunia :) yeh i feel that way been feeling worse since i move out of my flat and into my partners mums house staires im scared of know as i have fallen down them so many times :/ i cant look at the needle as i will have a painc attack witch i suffer with also so have found not looking makes it easyer ,
also another question for every one how do you all cope with having animals if you have any i find having animals round help i have a puppy and a younge at but find it hard to cope with the puppy i love her to bits but have been thinking of rehoming her as i cant cope but i hav depression and if i got rid of her i would be ever worse as she makes me laugh and she is the one thing that gets me out of bed in the morning
Yes, I do understand your stairs phobia as I've fallen down them too thanks to fibro. I now have a cane that I use when the balance is bad like today. It's not a typical ugly cane; instead I got one from the drugstore that has colorful butterflies and patterns on it. It looks like an accessory or piece of art, not a cane. And it does help with those stairs!
Funny you should mention it as my sister recently got a puppy and since I live with her I oftentimes have to deal with him. He's bigger than we thought he'd be and very rambunctious. We're getting him training at Petsmart. It's $120 and they gave us $20 off. It seems like it'll help him quite a bit as he's smart and has learned to sit quickly. I mention this as it might be a way to get your puppy more well behaved. If you can't afford this but want to get him some training, I suggest going to YouTube and looking for puppy training videos. I do think an easy command like "sit" would be a good place to start. Just having him realize that You are the boss and make the commands while he learns to listen to them helps a lot. Also, don't forget, puppies will soon grow out of their rambunctious period and be a caring and loyal friend, a dog. So I'd suggest to try and hang on there with him. It'll get better with him and help is available, as mentioned.
thank you she is getting there with traning and she is 7 months now she is only small a jack russle x chi i think but i have also found when in bed is as my partner has a staffy when she is curled up her heat helps the pain and i can get to sleep easyer and they have now learnt not to lay on my legs :) thank you for the advice already feel so much better feels so good to feel like a belong and finally not on my own :)
They are just the smartest dogs, and are very active! If I ever have another dog, it will be some kind of Terrier. I still have grandkids here alot, so not sure if I could take the extra committment, plus we have a major highway in front of us and no fences!
No offense to other breeds, but I grew up with an Airedale Terrier, cried for her after going to a huge farmers market and seeing hundreds of animals and only wanting her, I was 3 years old! My Pap got her for me, she lived to be in her 20's and was smarter than most people!
take those stairs carefully, last thing you need to do is break a hip! Slow and steady!
nicole as time goes on regarding needles the fobia wears off...after nearly 28yrs nothing bother's me now.
Regarding your partner and not believing you...when proof finally does come, get him if you can to attend your apointments with you, it's the only way some partners learn by hearing it from the hosrses mouth but it is terrible when we need full support.
Terri xxx