Last post Thu, Jun 12 2008 6:09 PM by Anonymous. 30 replies.
Hi! I'm Traci and I'm very new to this site. I was dianosed 1 yr ago with this disease that has stopped me in my tracks. The old me was very high-spirited person that not much broke my mood. I very seldom missed work or anything that was going on with my child or loved ones.
I have migraines along with the fibro and am just not the same giddy person that i used to be. My main problem is that alot of people think that I am exaggerating my aches and pains because I don't look sick. I don't worry alot about my work associates but it has put a major strain on my personal relationship. He thinks I should just MAKE myself go to work no matter how bad I am hurting. He just doesn't understand and it hurts my feelings. Have any of you dealt with this kind of thing and can I get some advice? I was doing better and we just recently got engaged and then BAM, it hit really bad again. I just need some clues. HELP PLEASE!!!
Traci,
I replied and welcomed you in this thread:
http://community.disaboom.com/discussions/p/5219/21082.aspx#21082
I'll wait and see what the others here at Disaboom have to say.
Hang in there. Great bunch of folks here with wisdom and things to say.
Dave
Hi Traci and welcome. Any chronic illness can strain a relationship, but one such as fibro that is not well recognized or understood is much harder.
Here are some suggestions:
Try showing him one of the "letter to normals" (see http://www.fibrohugs.com/forum/viewtopic.php?forum=21&showtopic=68973) or the "spoon theory" (see http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf)
Ask him to accompany you to your doctor appointments so that he can hear it from the doctor
Ask him to read or even skim a book about fibro...I particularly like The First Year: Fibromyalgia: An Essential Guide for the Newly Diagnosed by Claudia Craig Marek
Read Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife by Gregg Piburn. It will be helpful for you to read, and even more helpful if you can get him to read it too.
I know it will likely be hard to get him to want to read anything, especially if he doesn't think you're really sick or if he's in denial. And if he does believe that you are sick, he will likely have to go through his own grieving process at losing the person you were before he can start supporting the person you are. It's not easy for either of you, but I wish you the best.
Hi Traci.
I understand exactly where you are coming from. When I met my husband, 6 years ago, I had just lost a job due to fibro. I explained it all to him, but he wasn't with me to see it first hand. Soon after we were married I really started to go down hill. We'd make jokes about him rolling me out of bed, (literally) but at that point, I think he was starting to finally get it. Sure, I'd laugh, but he could see the pain in my eyes, plus the tears. (Which I never was a real crier.) Also, I was working another job in the homecare field as a scheduler which is very demanding and stressful. The biggest problem was the brain fog. I had to concentrate at least twice as hard as everyone else. But I pulled my weight. I was there for 4 years. The last year took the final toll on me. But he was there to watch it all. My body basically shut down. I slept for a week straight. Needless to say, I quit. So what I'm trying to say is that maybe the longer he sees what you are going thru, he'll be able to understand it a little better. Just keep the lines of communication opened always. I think the hardest part of it all is that we don't look sick.I hear that all the time. We just need to inform people. And by reading your post, I get the feeling that you are still the fun-loving girl you always were. It's just a liitle harder now. Keep that up because you need to be that way for your own sanity! Hope this helped a little. If you have any other questions, let me know.
Hey Traci!
Welcome to Disaboom! You did a great job expressing how frustrating it is when our disabilities negatively impact important relationships with other people-it seems like it adds even more pain for you in an emotional sense....it would be so frustrating to love someone and just wish they could understand. What methods have you tried so far to provide him with some education and try to help him better "get" this part of you? I'm glad you shared your story because I know many can relate even if they are dealing with different conditions.
Hi Traci
You know sometimes people do say things that they later regret. You know my husband didn't understand until he went to the doctor with me. She explain to him what was going on and you now its better. If I don't feel like doing anything thats okay. Fibro never comes on a good time. You have to work on it everyday. I have Lupus to so it makes my life really difficult. I'm not able to work. Pick up your spirit today Traci. I know that I've only just started this website myself and the people who have written me so so wonderful, just look at the response your getting. Talking about it makes everyday a little better. God bless and keep you close to his heart in your difficult time.
Flowergirl
PS Are you on in medication? It helps! Talk to you soon. Smile.
Hi I started this site this week. IT been awsome to read and learned from all of you. Anyway, I have to tell you in Nov 2004 I found out i had FMS. I knew something was not right for a long time. I did have neck surgery, elbow surgery, shoulder surgery. Married was in a shamble in other words a joke for number of years. FInally my body was just total shut down. IT took along time to regain that confidence in me. I have to say I am lucky I have a sister who is a psych. counselor and a sister law who works a insurance company understand what i have. They can explain to people better than me. My husband now understand what I have but he just don't know what to expect from me everyday. at least now been going dr. appt with me. I will be going back to pain managemnet next week after nearly a year have not seen him due to many things going in one year. Husband still want to attend the appts with me. Which is great and does give comftly feeling and relief. Because spouse can tell dr. what they see and hear. I do hope it helps with others. THey are not alone. Even it does feel like you are a lone but really are not alone
I found this blog after some research - my beautiful 32 year old daughter was diagnoised in July of 07 - need any advice you can give me - she is very private and is struggling - what helps you cope? What helps with the fibromalgia . Any meds you take? She is also havig problems wiht her health insurance....not uncommon these days. Any advice will be welcome
Linda in California
Flowergirl,
Hey! Thanks for the little pep talk, I needed it. I have asked him to go to the doc. with me. Everyone else has (my mom, dad, sis-n-law,daughter) except him. I have given him alot of info to read and even sat down with him and explained it to him in common terms so he could understand. He does understand to a degree, but he thinks that if he can get up and go to work everyday even if he feels bad that I can do it too. I do push myself and it works sometimes but I'm having a really bad episode at the moment. Maybe one day he will get it. If not, I'll deal with it then. Right now my daughter and my health come first!!! Talk with you later.
Traci
Yes I am on meds!! I take Cymbalta, Topomax and Cataflam for migraines, Ultram- only when I have to for the pain- usually I just try Tylenol arthritis, Ambien, and the dr just put me on Lyrica. Right now I am on a low dose of Lyrica, he's gonna move me up slowly.
If you have any advice on meds. Please give it to me!!!
Hi Kara,
I have tried all that I know to make him understand. I've told him, tried to get him to go to the dr with me, he won't. I've read info to him and explained it. I've gotten mad and screamed when he "just doesn't see why I can't work ALL of the time! That didn't seem to work either. I even try to ignore him sometimes. Nothing has worked.. He'll either get it or he won't. I have enough on my plate as it is being a mom and making sure that she gets what she needs or where she needs to be. She is my first love anyway and she understands and helps me alot. That is enough for me. Thanks for your message, I'll be talking to you again. Traci
Hi Traci,
Cmybalta my insurance would not even cover that stuff. I'm on Lyrica 100mg 3 times a day. You know what I gained 15 to 20 lbs on this stuff plus I don't feel a whole lot of relief on the stuff. Also, I must a have done something to my leg and not even noticed it because i have a really bad bruise. Lyrica weakens your nerve responses to pain. So, my doctor is weaning me off of it. Never quit it cold turkey because I quit taking it for 3 days and my body was miss signaling everywhere. Horrifying!!!! Believe me. My body quickly ajustes to meds. I think it has something to do with the Lupus. My kidneys are being affected from the Lupus now. I scared because a lot of people have died due to the complications due to the Lupus, maybe meds, or maybe the weight gain that comes on due to being inactive, steriods, etc. Zanaflex prescription keeps getting to the point I need more and more to make it work. Don't know what to do but just keep praying that I will not die before my children grow up and have thier own families. I've had a feeling for quite sometime that I'm not going to live a long life. I don't know why I feel this way, maybe just scared that's all
Have a Great day God Bless
Hi Linda,
Welcome to our family. You will find a lot of great advice here for both you and your daughter.
My best piece of advice is to keep that humor going. Laugh every chance you get. The disease by far is not funny in the least, but if I couldn't laugh about it sometimes, I'd be insane.
I pray for both you and your daughter that she will somehow come to terms with this. This forum is a wonderful place to start.
God Bless,Runt
