[B]Hi,my name is Joy....I'm new here,and wanted to introduce myself.I've had fibro for over 20 years,and it doesn't get any easier with time.I hope I can find some new friends here,plus help anyone I can with what I know (from experience)....and what I've researched.
I'm still a little lost cause I'm new,but I wanted to ask how many of you are on neurontin,and if it has worked for you?
Last edited by hummingbirdJC; 09-23-2008 at 08:04 PM.
A BIG warm welcome to you Joy!!!, ( I love your screen name Humming Bird) they're my favorite besides "mocking'birds.
I'd say even though you're a newbie here, you sure aren't a newbie to such a horrible, debilitating illness such as fibro. 20 YEARS!!!! Yikes!
I guess I won't shoot myself after all. I'm just kidding about the shooting part. I mean, if you can go through 20 yrs of chronic pain, then I can make it too.
They found my fibro 2 yrs ago this coming December, but suffered for about 3 yrs before finding out what it was.
it's only getting worst for me, not better. I am trying to go towards a more natural treatment rather than the barbaric toxic medications they're offering for people with fibro.
I've just changed my diet about 3 weeks ago and eating a less acidic diet and adding more alkaline rich food to it. I'm drinking water that has a high Ph level to it and wanted to add exercise to my life, but by the way I feel after just taking a quick walk on the park trails, it doesn't look like I"m going to be able to do that. I am suffering with such hip joint pain and right knee joint pain just from walking the other day.
I am at loss as to what type of exercise to do so that I don't suffer for days afterwards.
I never thought my body would turn on me like the way it is.
I just read the post that has recommended supplements and minerals to take if you have fibro and found the article to be extremely beneficial and interesting.
I already am taking multiple supplements on a daily regimine and am waiting now to see if I begin to feel better.
How were you diagnosed and when were you finally diagnosed with having fibro? being it's so new and all, I'm wondering when the diagnosis of fibro actually began?
I wish the scientists knew more about it so they can help us. I am suffering so horribly and feel at times I am losing out on life because I simply can't push myself to enjoy the things I want to do. I feel helpless and hopeless.
I"m not clinically depressed because I've had depression in my past, plus I'm taking a medication for general anxiety disorder that they also treat depression with.
You never know when a flare up is going to take place just from doing simple tasks that require an effort of just bending down multiple times. the list goes on.....
I am happy you found this website and hope you find information that is helpful to you.
If you could share with me or us, what you do for you fibro, especially being you've had it for so long, maybe you can help me?
I sure need advice, as I'm sure others do too.
Hope you have fun searching around the forum.
Just wanted to introduce myself to you and give you an outline of what I"m going through too.
best wishes to you Joy.
Welcome Joy - Glad you found the website... You will find many "friends" that will come out to greet you and play... They will share information with you and I am sure will learn alot from you.. I was working out to advanced Taboe and riding my bike 12-14 miles a day when I started having a lot of trouble with my hips, back, neck, shoulders and other little places. That being said, I also had been in a go cart accident where I had run into a tree head on at 40 mph flipped out and did about 5 cartwheels without touching the ground except when landing on my shoulder and head.
I do take neurotin 300mgx3 per day. along with many other meds. However, I suffer with migraines and have also been diagnosed with BiPolar 1 after being misdiagonsed with severe depression and generalized anxiety disorder for over 20 years. I was finally diagnosed with the BiPolar 1 after a breakdown about 2 1/2 years ago. The BP1 is still not under control. I also have quite a few digestive disorders that I am sure many other face. I also have the chronic fatigue, chronic myofascial and hypermobility. No pity party just letting you know. I have my pity parties by myself. All of my docs do work together though.
Is neurotin the only thing you take? How do you deal with your fibro?
Once again, welcome and glad to have you hear. Jenn
Thank you all for the wonderful,friendly,and warm welcome! REMOVED
Ok,now to answer your question Linda,about how I was diagnosed... I had fibro for most of my teenage years.I went to many doctors,and went thru many tests...and found nothing.All of the doctors came to the same conclusions...I was depressed,or the pain was all in my head.So,I started to see a psychologist,2x a week for approx 3 months.After we had talked,he had started doin some research on fibromyalgia.So,he (my psychologist) was indeed the one whom diagnosed me.And at that time,I had just turned 20.
I too suffer from migraines,and strangely enough depression.Many different sleep disorders,and several digestive problems~ which are all due to the fibro.I have many medical conditions/problems.About 6 years ago,I had to have a hysterectomy due to cancer,severe endometriosis,and adhesions.Then 2 years ago,I had to have both ovaries removed,again due to cancer,a huge tumorlike mass that engulfed my whole ovary,again endometriosis,and adhesions.
For many years,I just dealt with the pain....up until about 10 years ago.
Then,the pain skyrocketed,and soon it was almost impossible for me to do simple everyday things.I found myself crying cause of the pain,thinking I surely had polio,or bone cancer or something absolutely awful.
Then I finally went to a rheumy,and was put on meds~OMG it was a miracle!!!
For the first time in many,many years...I was pain-free.
Sadly it only lasted for a short time....
And now,I am in pain...but it fluctuates.It basically depends on the weather,what I push myself to do,how many hours I work,and stress levels.
I am on neurontin,zoloft,vicodin,and a high cholesterol and high blood pressure pill(s).
I am happily married,(this being my 2nd marriage-1st husband didn't believe I was in pain)and he is a wonderful man.He tries to understand,but I think he feels helpless,and that he cant help me.And that makes him feel bad.
I deal with fibro 1 day at a time.Its the only way I can deal with it.However there are many times,I'd like to just give up...but I have a 14 yr old son,that I love more than life itself,and I just cant do that to him,or my husband for that matter.
Well I've gabbed long enough.I just wanted to answer your questions,and let you have an idea of who I am,and what I'm goin thru,and have gone thru.I'm lucky...I know there are people that have it way worse than I have or do.My heart goes out to each and every one of you that have fibro,or any other med problems.And please keep in mind,I'm here for anyone who needs to talk.
Thanks for listening,and I hope you'll respond soon!
Take care,fibro huggs.Joy
With which does not kill us...only makes us stronger.
Last edited by HBMod07; 10-01-2008 at 10:13 AM.
Reason: Discussing other forums is not permitted.
how are you holding up this week, this day?
I too have learned that I have to take living like this day by day.
I feel like all I do is complain to my significant other. I always have a new set of aches each day and after a while, I'm sure he just shakes his head to himself but not in front of me. I feel fibro is ruining my life. I DON'T want to take any of the recommended medications for it because they really dont' know much about them. even thought they're FDA approved for this year doesn't mean it will be a year or more from now.
I just dont' TRUST the pharmaceutical companies anymore! they're so money hungry and greedy for their trillions of dollars they make off of people like us who are willing to take anything just to stop the pain.
I wish there was a way to hide my discomfort. I want this most of all.
I see by your introduction that you've been through alot too. and never feel that your pain is any less worst than the next persons. we all have to deal with it which winds up being pain and which directly effects you.
I enjoyed reading your post. I'm happy for you that you have a wonderful 14 yr old daughter too. I'm sure she's a big help to you when you need some help around the house?
and good thing you moved on from the man who didn't believe you were in pain and that you found a wonderful man who has compassion and trust in you. Us woman could not ask for more in our men..
I noticed that both of you mentioned you have intestinal problems. I do too!!!!! Is this because of the fibro??????
I haven't met anyone else with this complaint besides you two here.
I'm at my ends wit with my gastro problem and have taken matters into my own hands by going the holisitc approach, being the things my gastro dr. suggested stopped helping me.
he blamed it on IBS. Right over the phone without even seeing me.
I've never had a problem with my bowels till I had a major error go wrong from a simple medical procedure such as having a tubal ligation years ago when I was married. I have four children and my dr. convinced me to tie the knot so to speak.
I almost died.
since then my problem has only grown worst and more chronic.
May I ask what you two suffer from gastro wise?
and what do you do to treat it?
do they have clinical evidence that fibro is the culprit for gastro related illness?
I'm still stunned by what I read. this would be an answer from God if this is so. I've been wracking my brains for years now trying to find out why I am having such a chronic bowel problem.
I like answers to questions. I dont' want to just be told it may be this, or it may be that! by my doctor.
there has to be something that is the cause to the problem. not just to take a medication to treat the problem. I want to CURE the problem.
I have been suffering with a strange pain on the lower right side of my pelvis where the appendix is. it could be the descending colon too, or it could be a kidney stone, or what ever. all I know is that the pain I have has not stopped and i"m going for a cat scan tomorrow with contrast.
I'm curious to see if it's going to be a bowel issue?
I'm going to make sure I tell the technician I have fibro and I wouldn't have even mentioned it if you hadn't mentioned in your post that you too have related problems.
see how we learn from one another here?
oh, and I'm so sorry you are hurting from being told you can't be part of the team you were part of for so long. we do make alot of acquaintances and the people on boards become close like family members and best friends.
I too have made many friends by being part of boards.
It's part of my life that I make time for almost on a daily basis.
my partner does not understand that of course, because he's never done it.
so he does't understand why I do this.
I have healed through out the years by meeting others and gotten support from with similar afflictions.
I'm glad you found us and hope you decide to stay.
thank you for your help.
Welcome to the healthboards! I haven't been on long myself but i enjoy these forums because you can search on about any ailment and someone is there to talk to or share what you are going through. This is the first time in my chronic pain section.
I have been suffering myself for about 5 years, I can't imagine much longer but it is definitly a day by day situatuon. Some days are great and some days you feel like things can't get any worse. The pain can be consuming and depressing. I suffer from chronic everything is basically what I call it. I suffer from depression, who wouldn't on our situation but for those of you who are positive all the time more power to you! I wish I could do it every day. I have fibromyalgia that is mostly centered in my pelvis and back due to two bad back disks and endometriosis, IC - which is a very painful bladder disease. My hips ache and my bone hurt like they have holes being drilled into them. I have a brain tumor, migraines, sciatica and on and on.
We are here for you even if you feel like you have no one else. I am glad that you have a good support system in your husband and I welcome you with open arms. Life is surely a test of our strength.
Linda - Sorry it has taken so long but have not been up to par but you know how that goes... I have had gastro issues for quite some time and it probably started around the time the fibro started but before diagonosed... One doc told me over the phone it was colitis but never did anything about it.. It finally got way out of hand so GP sent me to a gastro doc back in Feb. He did an upper GI and colonoscopy... I already had to have my gallbladder out back in 04 or 05, can't remember which... Of course my husband already thinks I am on to many meds however all my docs know what each of the others prescribe due to my illnesses... When the GI doc came out to talk to the husband, first thing he said is she needs to get her docs together and get off some of these meds, mostly anti-inflammatory and pain pills... My husband has no clue what meds I take or how many or what they are even for. I don't take all the pain pills I am prescribed, I take one 81mg asipirin due to TIA strokes suffered in 06 and one anti-inflammatory 7.5 mg a day... I didn't think the anti-inflammatory was doing anything but I had to go off of it 5 days before the upper GI and colonoscopy and believe you me, I could then tell it did work... Now granted, that is not all I take but those are the meds he was talking about... However, he then preceeds to tell me I have gastritis, IBS, and diverticulosis. So he prescribes Protonix and then also tells me to take Polyethylene Glycol, Miralax and Benefiber everyday... I started taking this the next day... If I did this everyday, I would be attached to the toilet... Not a happy place... So I quit doing it and am back to square one in that department.. I just can't go if you get my drift... I probably don't go except for maybe one time every 10-12 days. Not a lot of fun.
I hoped that answers your questions in that department... I can't believe this is the first time you have heard of others having this issue. I know of many that have digestive disorders with fibro, start a thread about it and I bet you will see others come out of the wood work...
I would also like to welcome the other newbies and if you have any other questions, please feel free to ask... I will try to help in any way I can... Please try to have a pain free day... Jenn