Please help me

I'm 19 years old about to be 20 in 5 months, I'm currently going through the process of being diagnose with Fibermyalgia. My grandmother and my mother have Fibermyalgia. I've been living with Chronic pain since I was 10years old, it wasn't until I was 16 that I decided to seek help. The first doctor I saw ran all kinds of tests, from x-rays to blood-work to MRI's, nothing showed up...this doctor didn't believe my pain and just decided to send me to physical therapy, the doctor told me to just live with the pain. At 16, I was working 30 hours a week doing housekeeping at a hotel, they wanted me to go to physical therapy 5days a week. I didn't last 3 days at physical therapy. It got to the point that by the end of the day I could barely stand. Suffering, I stopped going to the doctor all together. Now, 3 years later with a new doctor I'm doing these test all over again. Blood test revealed that I have Juvenile Rheumatoid Arthritis at least that's what the doctor says, as he continues to diagnose me.

I can't live like this, I can't keep a job, I can't skate any more or dance. I've gain 55lbs went from being 110lbs to 165lbs. From the moment I wake up feeling all stiff to the time I struggle to fall asleep the pain get's worse through out the day. Since I was 15 my sleeping schedule has been messed up. I'd stay up all night...go to school struggling to stay awake...come home at 3pm...by 4pm I was sleeping. Get up between 8-11pm and do it all over again. Now that I don't go to school, it feels like I sleep the day away not able to accomplish much. I go to bed between 6am-10am and sleep until 1pm-4pm. I've only been able to work night jobs...I hardly leave my house. I would eat IV Proven like skittles through out the day, until I realized they really didn't help and stopped taking pain medicine. Now, the doctor has me on Mobic and Flexeril...the mobic makes me sick and the flexeril makes me pass out. Yet, they say I can work on this medicine, but yet I'm not allowed to drive on it. I have not driven a car in about a year now. Most of my family and my friends are tired of hearing me complain about this pain and only my mother and my fiance have been supportive.

Yet some times the pain is so horrid, that it feels like I'm dieing inside. It's all over, my rips, my lower back,my butt, my knees my feet. This never ending pain that gets worse as the day progresses and when the weather changes. I've become depressed, I cry every time I see my doctor because I don't know what to do any more. I feel as if I've lost my childhood and now I feel as if my life is slipping right by as the days begin to blur together. My mother feels sorry for me as I do for her because she is the only one I can talk to about this. She is the only one who knows what I'm going through because she to has gone through the same thing. Yet, I still wait to be diagnosed and she believes I have Fibermyalgia and the doctor I am seeing is not ruling it out.

Please help me...for those who read this, respond and tell me how you deal with this syndrome? How you go on each day trying to live a normal life? What pain medicine is better to take, IV proven, Tylenal, Advil, ect...? What activities are good to do that doesn't stress the pain? Any advise, please help me?

Hi, Foolishness, and welcome!  I'm so sorry you are in so much pain.  If you have been diagnosed with Juvenile Rheumatoid Arthritis, are they giving you any anti inflammatory meds?  Things like Celebrex are supposed to help with that.  Actually, I've been thinking of talking to my doctor about that med for me and my fibromyalgia.  I have had this for decades and have been able to manage my pain with ibuprofen and extra strength Tylenol.  I also take malic acid/magnesium supplements and vitamin D3 to help with pain and fatigue, too. 

 

Be sure to check out Fibro 101...the first thread on the forum.  There are links to good information about fibro and you will learn a lot there.  There are links to malic acid/magnesium supplements and vitamin D3 and how they work in the body.  There is also a link called What Else Could It Be because may of our symptoms are the same as other illnesses.  Your doctor will run tests to rule these out. 

 

Make sure your doctor treats fibromyalgia patients, too.  There are still some doctors out there that don't think this is a real illness!

You can have a full and enjoyable life in spite of fibro.  I know because I have!  You just need to find what helps you control your pain.  Gentle exercises like walking, yoga and swimming help and also gentle stretching exercises, too.  Some like gentle massages.  These help me a lot.  Moist heat is wonderful, too.  Sitting and laying too long will only make you stiff as a board.  Cleaning hotel rooms is probably too strenuous for you, too.  I'd try to find a job that isn't that physical.  That could be playing into all of your pain.  That would be enough to cause a constant flare with fibro!   

 

I'm looking forward to getting to know you better.  Don't hesitate to ask questions because we are here to help you.  Hope to hear more from  you soon.

Sherrine 

Hi I am new to this but I cryed when I read your post. because i am only 30 and feel like life is over and i know exactly where you are coming from. I have not worked in over 4 years and i dont have a social life, sex life or any relationship for that matter. I have the worst doctors and have seen the worst doctors that want to drug me up on anti depressants. I tried to take my life and have a very bitter anger buildup where i just want to hurt myself more. and I have to stand on God when those hopeless times comes. as far as meds. I take nothing. nothing works for me. and remember everyone case of fibromyalgia is different. some people dont have every single tender point messed up. I do. so i know the wide spread pain. I do nothing and hurt and when i do something like leave out the house from imprisonment i find myself in worse pain because I overdid it because I dont want to be a disabled person. I am now going through some things with hot and cold flashes. I think its pre menapause but of course the stupid doctors dont see anything. I also have a very orange strong smelling urine which scares me so bad. but what i can tell u what helped me. no caffeine, no sugar. They were giving me shooting pains which i still get but not as bad. just massage the area that is hurting. after about 5 years now I am getting used to the pain. yes it is irritating and I have very bad anxiety and the doctors dont give me no medicine for none of these problems. I went today and hadn't been in about 6 months because I leave out crying and hopeless. dr. said u are depressed and we need to treat the depression. I feel that is a cop out. Take control of your health because these doctors dont have a clue. I hope this helped u. I will pray for all my fibro friends and when u feel down open your bible up God will talk to u and give u strength. Trust me it has helped when I wanted to give up again. and with a failed suicide attempt I guess I got a reason to be here.

Spreading air hugs and love to all

Foolishness and Monnieluv,

I can tell you first hand that getting your depression/anxiety under control will be the first and most important thing you can do to help with your fibro.

My daughter has bipolar and I can tell within 3 days of her not taking her meds (or the dose needs adjusted) that she is in fibro trouble. She cannot get out of bed, she constantly cries, her body hurts so bad she feels like she has the flu and all she wants to do is stay shut up in her bedroom with the curtains drawn. Unfortunetly she cannot get this way because she has 3 boys under the age of 6 to care for. So, if I ask her if she missed her meds or has had an appt for readjustment she will jump right on it. With the proper anxiety meds she very rarely has the severe fibro aches and pains.
So, Please, work with your doctor on getting you on the rights meds. sometimes it will take a combination to work so you have to be patient and at the same time diligent.

glad to see that you made it here, not for the reason but for the support you will receive.

Thank you every one for you advise! I have a few more questions...heat such as heating pads and baths do not help me or my pain. Is it strange that I find comfort in ice packs? Some times the only way i can fall asleep is if I lay an ice pack over my knees or under my back. Also, through out the day I'm constantly moving. I can't sit, stand or lay down for long periods of times. Is that odd or do some of you suffer like that as well? Through out the day I find my self moving around a lot, I go from laying down to sitting, then standing constantly. Once I was laying on my stomach in bed reading a good book, an hour goes by, when I decided to move I was unable to. I felt paralyzed...I couldn't even roll over on to my back. My fiance had to help me out of bed. When he straighten me up I started screaming and crying, the pain was so terrible. Has that happen to any of you or maybe something similar? Lastly, on really bad days when I just want to break down and cry cause the pain becomes unbearable to tolerate, I put in my head phones and listen to music to focus on something else other then the pain. But when I go to some one's house and I forget my meds. and ipod what are some other ways to drown the pain out. I was once at church and I could not sit any longer...I ended up running out of the church to take some I.V proven and going out side to stand because the pain was so intense. Again Thank You all for your advise I really appreciate it.

Post Edited (foolishness23) : 12/16/2010 1:52:57 AM (GMT-7)