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LIFE WITH FIBROMYALGIA
22 Replies
REBECCA - January 27

HOW DO YOU FIND PEACE, LIFE SEEMS SO USELESS. I HAVE A BOY FRIEND WHO'S SO INTO SEX. I HATE IT, IT HURTS, IT TAKES TO MUCH ENERGY.HE'LL TAKE IT EVEN THOUGH I SAY NO.I CAN'T PERFORM LIKE I USE TO, OR DO I EVEN WANT TOO. I'M TIRED OF HURTING,I'M TIRED OF CRYING,I'M TIRED OF FEELING ALONE.I NEVER HAVE A DAY WHERE I FEEL GOOD,I HAVE BEEN IN BED FOR THE LAST 11 DAYS, FIRST IT WAS MY INNER EAR CAUSING ME TO BE DIZZY,AND NOW ITS MY LEFT SIDE OF MY CHEST HURTING SO BAD THAT I FEEL LIKE I'M HAVING A HEART ATTACK.NOT TO MENTION ALL THE STIFFNESS.I'M QUITELY LOOSING IT,WILL IT EVER GET BETTER OR IS THIS HOW I'M TO LIVE THE REAST OF MY F**KED UP LIFE?

 

Dee - January 5

Rebecca, honey, hang in there. I completely understand where you're coming from. There are days I can barely function myself. I am married but my husband has no idea what FM is or how I am affected by it. I started getting alternative medicine treatments 2 months ago and feel better than I have in years. I get an IV treatment called Myers Cocktail; it's mega doses of Vitamin A, B Complex, C, Calcium and Magnesium. It gives me more energy than I've had in as long as I can remember. My doc also gives me a vitamin called Life Force made by Source Naturals. Talk to your doc and see if you can give these a try...they do make a difference. I'm here when you need to talk. You are not alone in this fight.

 

Rebecca - January 6

Dee, THANKS! I will talk to my doc. about those two things.This was the first time i have ever gotten on line to talk. sometimes it so hard to keep my head above water. it scares the hell out of me. I get so depressed at times, Well i just wanted to say thanks for your response. I proberly could have wrote and wrote.not that i'm glad you have fms but its nice to know that i'm not going crazy and that someone understands. Thanks

 

To Rebecca - January 6

Hang in there. I can truly understand, this syndrome is horrible. Keep trying to find the meds to help you. Your not alone.

 

Jessie - January 7

Rebecca, I really understand the frustration and depression you describe. I was there not that long ago. The best advice I can offer is just keep fighting the fibro. Fight it by deciding each minute or each hour that you're going to keep living your own life and that the fibro WILL NOT own you. I fight every day. I fight because I know if I don't, I will be overcome mentally and I can't have that. Your life is your own...don't let the fibro take it away from you. For physical relief, I agree with Dee that vitamins are really helpful and magnesium is a God-send. I also do yoga to try to stave off the stiffness. Some days it really kills me, but I do it. Whatever works for you and helps you cope, just remember to keep fighting.

 

dana - January 7

you should lose the loser boyfriend if he has sex with you when you say no. you didn't say if you're on any meds, if so, you may need something new, and let your md know how you are feeling. i know how you feel; a few weeks ago i felt like calling dr. kevorkian because i felt so bad. i have not slept through the night in 2 years, and i have not had i pain free day in about 1 year. i was only diagnosed with fms 2 months ago, so it takes a while sometimes to get the meds adjusted. hang in there. if you don't have a good doctor get one. help is out there. maybe you should read some books on the subject; knowledge is power. keep in touch.

 

FROM REBECCA - January 8

THANKS TO ALL FOR TALKING WITH ME.JUST TO LET YOU KNOW I HAVE AN APPOINTMENT WITH A WOMEN WHO CALLS HERSEF LADYHAWK, SHE HAS A HEALTH FOOD STORE AND MEDICINE LODGE. I'LL LET YA KNOW HOW IT TURNS OUT.I HATE THE MEDS. THE DOC. GIVE ME.i BELIEVE THE ANTI DEPRESSANT ARE DEPRESSING(ELAVIL). TRYING TO FIND WHAT "WORKS" IS AS HARD AS DEALING WITH THE PAIN AND EMOTIOAL PROBLEMS OF FIBROMYALGIA

 

Jean - January 8

Hi Rebecca: Elavil is used mainly for sleep and powerful enough to handle
Fibromyalgia. Please seek a psychologist for the depression and anxiety that goes along with this condition they can monitor you on these medications so they will work better for you. For Pain it depends on your condition what the doctors will start on you but I found Talwin NX helpful. Flexeril also is good in helping with muscle spasms. Talk to your doctor.

 

Dee - January 9

Rebecca, I just came from my 3 mo. check up at my doctor. I told her I still have horrible pain in my hips. She recommended Capsasin (sp?); it's an over-the-counter cream that can be used for pain. I'm going to give it a try. Thought you might want to pick up a tube yourself. Also, my former rheumatologist had me on Elavil -- did nothing! I felt even more depressed and it didn't help with the sleep either. Keep trying till you find what works for you. I've been trying things for the past year and a half and have finally found what works for me. I'm starting laser therapy later this week; hopefully it will help with the pain. If you ever need somebody to talk to, just e-mail me at [email protected] I'm always around!!!!

 

Jean - January 10

How do you find peace? Within yourself, family, friends and co-workers. Researching your illness may give you more understanding to yourself and your friends and family. Having a good medical team will enhance that. Keep trying to get it under control so you can go forward and find someone you can talk too who is sympethectic to your illness such as a close friend or family member or a psychiatrist who will always be there for you.

 

RBECCA - January 12

I'M TRING TO GET SSD. I WENT TO THIER DOCTOR ,HE WAS A LLUNG DOC. OF ALL THINGS. I SAW HIM NO LONGER THAN 5 MIN. CAN SOME ONE ANSWER ME THIS QUESTION, HOW DO YOU EXPLAIN FIBROMYALGIA IN 5 MIN.!! I FELT LIKE HE WANTED ME OUT OF THERE AS QUICK AS POSSILE. HE PAID ME NERVOUSE. IT WAS THE BIGGEST JOKE I HAVE EVER SEEN.MY FATE LIES IN WHAT THIS MA SAYS TO S.S. HOW DARE HE JUST RUSH THROUGH AN EXAM.FIVE MINUTES DO YOU BELIEVE IT.I HAVE SO MANY DIFFERENT SYMPTOMS THAT HAPPEN AT DIFFERENT TIME, SOME SEEM TO GO AWAY FOR A BIT BUT RETURN AFTER A BIT. ALL TIME YOUR DEALING WITH ANOTHER SYMPTOM. I DONT KNOW ABOUT EVERY ONE ELSE BUT ME ONE DAY IS A DIFFERENT ME ANOTHER DAY. HOW DO YOU FIND OUT WHAT WORKS,WHEN A GOOD DAY YOU GO BUY GROCERS FOR YOU FAMILY, AND RETURN HOME YOU FIND THAT YOUR LEGS & HIPS HURT TO THE BONE, EVEN THE BONE SEEMS TO HURT.

 

Dee - January 13

Rebecca, I sent a reply to your e-mail you sent. It was good to hear from you. We have a lot in common (including location). We're separated by the Ohio River. I would like to stay in touch to have a friend to talk to who understands how it really feels to have FM. Let me know whether you got my e-mail.

 

Jean - January 14

Hi Rebecca: This Fibro is hard to deal with I know and it is even harder when a doctor doesn't respect you as far as what is going on with you. 5 minutes is not enough time to get the answers you need. Sometimes I write a letter to, my doctor before my appointment to get him caught up with what has been going on with me and upon my visit we have an understanding and go to the root of the problem. But I think you need another doctor.

 

rebecca - January 14

yes dee i received your e-mail, thanks ! jean I think thats a good idea about writting a letter, I'll do it. You know sometimes its hard not to feel sorry for yourslf. I very much want to take a strong step forward.I may seem weak minded but i'm not. There are times I do want to give up just because it takes so much energy to do any thing.There are a few suggestions i'm going to try and follow. Only time will tell. As far as the Elavil, That crap is going down the toilet. It was hurting more than anything. I was close to suicide. I have stopped for about maybe week. My head feels clearer.I perfere to stay away from ant-depressent used for pain.IT never helped for long any way. everyone take care and have a good day

 

Jean - January 15

Hi Rebecca: You said you didn't like antidepressants and I for sure did not and do not to this day but when you brain chemicals are unbalanced it throws your whole system off, you just need to find the right one for you. I take Remeron, less side affects and it takes time sometimes up to a year but you need to be monitored every month on those drugs so the doctors know if they are working for you. If you decide to try them again keep notes and see a psychiatrist or the therapist on duty, a PA preferrred, and see how it goes. They may even be able to help with sleep now for the pain your own physician helps with pain medication and flexeril for muscle spasms. It will take time I hope you find the right combination to help you. God Bless.

 

AKFlyfisher - January 17

No matter how tired you are, or sore you are, you have to force yourself to move around or walk on a treadmill. I find if I stay home on the weekends and sit on the couch all day, I feel worse. Believe it or not, I own a boat and go out in the ocean fishing all summer and get the heck beat out of me. I also ice fish in the winter and my hands turn white (not blue like Raynauds :).... I feel best for only an hour after excercising. SInce I am not married or have family close, I am lucky I have a hobby I love more than anything. In my 20s I backpacked and hunted all over Colorado befor coming down with this at age 29 in 1997. Also I had to change my diet, I had to quit coffee, tea, lattes (lactose intolerant now), and my favorite chocoloate :( and ice cream. Eating low fat foods like rice and chicken and fish with fresh fruit, vegetables, vitamins and water helps a lot. A gentle massage helps as well, but can get expensive. I was going to a pain clinic and they were having a college grad do a massage twice a week for 30mins and charging my insurance $300 per session, which really wasnt worth it. I have not tried any pain killers, most my pain is in my mid back when I twist my torso. I should try Tylenol, Ibuprofin didnt do anything, neither did Aleve (now banned). Ultram is recommended, but I have not tried it.
Hang in there and keep trying, a lot of times the docs dont give enough doseage. On Elavil they told me only 10mg, I ended up gong to 100mg before bed, everyone is different. They give up to 300mg for depression, but we need less than that. I made my limb movement disorder worse while sleeping, tricyclic antidressants can make PLMD and RLS worse and I agree. I get mad a lot as well, everyone does, but this site helps. God Bless

 

valerie - January 17

Firstly, you are probably feeling worse because you are with a boyfriend who doesn't care enough. That can tear you in two. I know it is lonely without a mate but in the end you feel lonely anyway so it can only get better - a lot better. Try to get out of bed more - dizzy or not, and if your chest pain isn't the heart ( go to the Doctor to check) then it is rib pain like a lot of get with FMS. Have you considered reading a book on managing pain? it is extraoridinary who the brain picks up signals true or false and I think in your state right now the brain messages are all jumbled up thus the depression and pain. But in the end FMS can be attricuted to stress and it seems you are under stress all the time. Let go of what is bad and get on with your own life. I hope you feel better very very soon.

 

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