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Posted 1/5/2012 4:40 AM (GMT 0)
Hello everyone,

I am hoping that everyone is well (as well as they can be). I'm new to this forum and have found it comforting to be able to talk about this and not be judged. I have recently been diagnosed with Fibromyalgia after 2 years of pain and doctors just saying "I don't know what's wrong with you." It's so frustrating and some days I don't even want to get out of bed from the pain and fatigue. I work in a deli at a truck stop and do a lot of work and sometimes work 16 hours with only 3 hours of rest in between. I'm a full time college student studying photography and spend my off days at school. There isn't any off time to rest for me. I try to keep busy to ignore the pain. I think I'm denial that I'm sick . This last week I've been in and out of the hospital 3 times and have so many bruises from IVs and blood work that it hurts to move. I'm so tired i can sleep for days and still sleep more. I had a seizure Christmas night and am now awaiting the results from a CT and MRI. The doctor's still don't know why that happened. I am only 19 years old.

my question is :

How do you keep your head up when it feels like everything is going wrong at the same time? what can i do to get this all under control? I'm having the worst month and am starting to feel hopeless. Any advice?

Thank you. sad
Posted 1/5/2012 6:52 AM (GMT 0)
photo major PLEASE don't lose hope, it is ALL that you got that can make you stand a chance.
Have they tested you for epsteinbarrvirus/ mononucleosis yet?
I too suffered unknowingly when finally my endocrinologist took one look at me and said he could see I'm depressed. He also believed it was fibro, but after those tests came back with astronomical values we knew. So you might to consider asking or insisting that this test be done.
Have they offered to Ambien for sleep? It has helped me tremendously! I really don't like having to rely on drugs, but we have to function and if they help then life can get alittle bit better. My doctor ordered it because i had insomnia as well as when I did fall asleep, I constantly woke up and was never getting what they call restorative sleep which is of utmost importance. I hope some of this info might be or serve as some sort of help for you . As far as keeping your head up, try and read these blogs and respond to some that interest you. You will find that being cared about and you wanting to show care to someone else is really quite a healing thing for our soul.

Post Edited (ReallyTrying) : 1/4/2012 11:56:14 PM (GMT-7)

Posted 1/5/2012 7:25 AM (GMT 0)
ReallyTrying-

Thank you for responding. Yes I have been tested for mono, and I've had it twice. The doctor thinks that is what made it easier for me to develop the issues I'm having now. I suffer from bad anxiety but refuse to take meds for it. I have tried Ambien and I still woke up even though it was a strong pill. My body functions on 3- 5 hours of sleep. It isn't healthy but it is what I have been doing and it has worked so far. I can tell when my symptoms are getting worse when I sleep 8 hours. I'm trying to stay away from meds as long as I can, it's getting harder to not take Ibuprofen and muscle relaxers every time something hurts. Your info was helpful. What specialist should I see for future testing and treatment? I'm hoping that the more I talk about this that it'll be easier to except and feel better.

Thank you & take care
Posted 1/5/2012 7:46 AM (GMT 0)
Photo major- sorry you are having to go through this. I suffered from seizures due to medication related. I never use to have them, but Dr's ordered meds that didn't mix well together. I know they can be very scary. Having fibro can be difficult if you work non stop. You might have to evaluate your work and school schedule in order to get some control of your fibro. Stress will make your fibro feel ten time worse. It sounds that you must be under a lot of stress. I think if you can reduce some work hrs or school hrs it will help. Hopefully you have a dr. that you trust and knows how to treat fibro. Learning as much as you can on fibro will benefit you. You have came to the right place for support and learning some new ideas on the treatment of fibro. I hope you have some family support. You can get some control of your fibro, only if your kind to your body. That means reduce the stress, medications, light excercise, heat and rest. I know that sounds crazy, but it works. If I only knew it years ago.
Posted 1/5/2012 8:00 AM (GMT 0)
ak angel-

The crazy thing about the seizure was that i wasn't on any meds when it happened. It was my first and hopefully my last, it was so scary. I've cut down my school days to once a week and taking more online to make it easier. My boss is going to give me better hours. She sees what I'm going through and is trying to make it easier for me. I am a very stressed out person. I worry about everything due to my anxiety and my need to always make people happy. I have been through at least 10 doctors and have finally found one who specializes in fibro and chronic illnesses, he is how I found out I have fibro. My family and boyfriend are very supportive and I find myself depending on them a lot, especially my boyfriend because he takes me to all my appointments and is always there to try to ease my symptoms. I am a lucky girl to have him. I'm trying to be kinder to my body than i have been. What medicine is the best for fibro and what kinds of exercises are fibro friendly? Thank you for your advice.
Posted 1/5/2012 1:14 PM (GMT 0)
Hi, PhotoMajor, and welcome!  I'm glad you found us and joined in.  I'm glad to see that you are being thoroughly checked out because many of the symptoms of fibro and like that of other illnesses.  These should be ruled out first. 

 

You are in the process of finding out what to do about fibro.  Once you get in control of the pain, you can have a full and enjoyable life in spite of this illnesses.  I know that I have.  So, you do have a lot to look forward to in your life!

 

I use malic acid/magnesium supplements and vitamin D3 supplements to help with pain and fatigue.  I still have pain but it's more manageable.  Gentle stretching exercises help along with a daily gentle exercise.  I walk and it's very good for fibro.  Swimming and yoga are other good gentle exercises, too.  You do need to keep moving with fibro.  If you sit or lay too long, you will be stiff as a board and have more pain.  Also, pacing yourself is important.  Everything gets done but in a different time frame.

 

Be sure to read Fibro 101..the second thread on the forum.  There are links to good info about fibro and you will learn a lot there.  Good starting links are called Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia.  There are also links of the gentle stretching exercises, malic acid/magnesium supplements, and vitamin D3 supplements and how these work in your body. 

 

I find that keeping a positive outlook on life helps me as much as any medication.  There is a good article in Fibro 101 about maintaining a positive attitude.  This might help you, too.  I know it helps me a lot and I do go back to it occasionally.  I hope you like it as much as I did.

 

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

Posted 1/5/2012 2:37 PM (GMT 0)
You are not super-woman. Unless there is a little something you are not telling us. *small joke*

Your body is telling you something. Listen. Just because it is working kinda sorta now does not mean it will forever.

I was diagnosed during the last few years of finishing my PhD. In order to keep up the quality of work I had to do medications. I have never regretted that. What helped me was a painkiller, sleeping med, and anti-anxiety. I also had to give up some of my load, in order to manage. I didn't like this, but....

Proper eating, proper sleep, gentle exercise, and listening to your body's needs and saying no occasionally can help you get a handle on this. You are getting ready to start a new semester (as am I), so start on a good schedule from the beginning.

Buona fortuna.
Posted 1/5/2012 5:05 PM (GMT 0)
Welcome to the family PhotoMajor!

So sorry that you are dealing with so much at a young age. Taking care of you is the most important thing. Keeping busy does distract pain but taking time to rest is important too :)

The "family" has given you wonderful advice. Personally, I have found if I can control my stress level everything seems to go smoother...doing relaxation therapy... a combo of walking, deep breathing, meditation and visualization....basically taking time for just myself helps gives me a sense of calm. Taking the time to do so is very important...sometimes we have to change our priorities to help.

I'm very glad you have joined us and keep posting...we do care :)

Hugs, Robin
Posted 1/5/2012 7:12 PM (GMT 0)
Hello there from a blistering Johannesburg SA. There are two questions I need answers to. 1) Does FMS ever go away and 2) does anyone else out there get lightheaded (no spinning as such) regularly? It drives me crazy. I can be feeling OK, manage the pain but cannot do anything about the bouts of light headedness. Especially at night or when the light changes from bright sunshine (very common here) to the setting of the sun of neon lights.

Thanks
Janine
Posted 1/5/2012 8:26 PM (GMT 0)
Here's a hug! :-)
Posted 1/5/2012 10:19 PM (GMT 0)
Photo major- I was glad to hear from you. You ask what meds work well. We are all so different how we control our pain and anxiety. I have had fibro for many years and I had to go down a bumpy road before I got controlled of this fibro. I use to be in severe pain after injuring my neck. I was put on hard narcotics for many years. I came very dependent on them. It started causing many problems in my life. I finally had to learn how to manage my pain without heavey narcotics. I now use subutex that is less addictive for pain. I take a class on anxiety and depression. It really helps if you can read some info on how to get a handle on anxiety. I am using magnesium, vitamin D, and calcium supplements for pain also. It seems the more natural remedies are the best for me. We have a lot of people that love photography here in Alaska. So many beautiful pictures of wildlife. Don't do high impact excercise or you will regret it. Sherri had some great ideas. I walk my dog everday and dance at church. Lol.
Posted 1/7/2012 9:41 AM (GMT 0)
Thank you everyone for responding. It really means a lot to know that there are people who understand what I'm going through and who genuinely care.

Sherrine- Thank you for the information and genuine care. I've got a few books and have started reading them, but get depressed and can't finish them. I will definitely look at the links in fibro 101.

Myself 09- Lol. Alas, I'm not superwoman, I'm just very stubborn. I tend to over work myself too much, but I think I've come to terms with myself and took 4 days off of work. I feel better just being able to relax. My biggest struggle is trying to let go of all the projects I have started. I hate quitting. Thank you for the advice.

crazykitty- Thank you for the welcome. I've been working on keeping my stress down, I've noticed that I feel better when I'm calm. I started doing pilates last week and have even gotten my mom to join me in taking our 2 pit bull puppies for walks. I think just having a place to vent is going to help me a lot. Thank you.

beachlover 89- thank you for the hug I really needed that.

ak angel- I'm sorry that things got rough. I hope that their going easier now. I have been given Nortryptiline ( I probably spelled that wrong) which is a type of anti-depressant. It helps but I'm at the max which is 5 pills a day. I've been recommended some anti-anxiety pills but am afraid of not being able to function without them. I've been using aroma therapy and it helps a lot. Oh, I would love to go to Alaska and photograph the wildlife there. It's so pretty there, I bet the sunrises and sunsets are just beautiful. Thank you for responding, your info is very helpful.
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