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Posted 1/5/2012 1:37 AM (GMT 0)

I have felt like there is no where to turn, my life has been evaporated into a very small container that I can no longer fit in to. I have two children, and a husband who are suffering with me. I have been newely diagnosed with FM, but have been dealing with chronic Fatigue Syndrome for 10 years now. I had that under control, with a few painful and exhausting flare ups from year to year. Over the past few years, I have been dealing with extreme memory loss, growing fatigue, pain from small to extreme depending on my exerstion the previous day. I find that I can no longer do the things I enjoy, riding my bike causes me a weeks worth of greif in aches so bad that I would think I had a severe flu. Unfortunately I was also diagnosed with Tietze syndrome, which is where the connective tissue between the ribs and the sternum swells so painful that when it spasms it feels like I am unable to breathe, with alot of pain during each breath. So with that and the FM the pain can be so bad, that if my Tietze is inflamed due to apparently just doing the laundry, then I suffer horribly.

Work is suffering, I have a job that is very demanding, stressful and focused on hitting goals and numbers. It's hard to keep up. I have been started on Gabapentin, 900mg and I can not work well since I am falling asleep at my desk, and without the medicine which is where I am at now, makes the pain and aches even more worse. I am going crazy and it's not the slow steady going, it's like a train coming right at me.

I have a fear that on the 13th when they start me on a new medicine, it will really affect my job, and how do you work and live with the meds they want to treat you with for this? I am not sure what to do or where to turn. Saw this forum and feel that there may be other alternatives, but I am not sure what to do.

Posted 1/5/2012 2:02 AM (GMT 0)
Hi Cici44,
I empathize with you very much. I don't have very much in the way of advice, but I did want to welcome you to the forum and tell you that you're not alone.
I've suffered with undiagnosed chronic fatigue for over 10 yrs now- no Dr wants to give this diagnosis for some reason. I've been told it's because it's no longer a popular diagnosis among Dr's. Well it still exist's until they find a cure! Mine has also progressed over the past year and a half to what I now believe is fibro- still awaiting an official dx. In the meantime, I needed support and to talk to people who understand and know how real this is.
When I found this forum, I was so happy to have finally found people who get it and don't think I'm just crazy or this is just depression. Ugh! If I hear that one more time!! Who wouldn't be depressed having to give so much up and losing so may aspects of their former self?
There's a grieving process that's necessary to get through. Sounds like you're in the midst of it, as am I. I wish I had better advice for you, but I wanted you to know that you aren't alone and I'm glad you found this site. Others will have much more insight and hopefully be able to share with you what works for them.
I wish you the best.
Posted 1/5/2012 2:27 AM (GMT 0)
Hi CiCi,

I wish I had the magic answer to help you. All I can say is that I was a single Mom suffering with fibro/cfs and it was terrible. I always felt bad how it was effecting my family and life, but I knew that I was trying the best that I could.
It is good that you have found this site because as I have learned in the past day, people here care and understand.

I wish you good health
Posted 1/5/2012 8:24 AM (GMT 0)
Welcome Cici44- As a mother myself I know how you must feel, especially if your fibro is in a flare. I came to this site one year ago in very bad shape. I started reading and trying new treatments for fibro. It came to conclusion that I wasn't going to get better if I didn't start changing things in my life. I was working as a nurse and it was very stressful. I had to reduce my hrs, try meds such as supplements, rest and keep my stress level down. I am happy to say that I have been doing well. It wasn't easy, but worth all the hard work I did to get here. Hopefully you can have the same.
Posted 1/5/2012 1:29 PM (GMT 0)
Hi, CiCi, and welcome!  I'm so glad you found us and joined the family!  You are in a rough period...finding what helps control your pain.  You most likely will not be pain-free but you can get in control of the pain and have a full and enjoyable life in spite of this illness.

 

I don't take the prescription medications for fibro because I don't want the side effects from them.  I used ibuprofen for years but recently developed bleeding ulcers so I had to stop it.  I do use malic acid/magnesium supplements and vitamin D3 supplements to help with pain and fatigue.  I recently started another alternative product called Curamin and it is helping me also.  I do take extra strength Tylenol but never more than the "safe" amount per day...4,000 mg.

 

I use gentle stretching exercises (can be done sitting down at your desk!) and gentle daily exercises (I walk) to help with pain and fatigue, also.  If you sit or lay too long, you will be stiff as a board and have more pain.  I also pace myself when doing things.  I can't do things the way I used to so I work around fibro to still get it done but in a different time frame.  

 

I have costochondritis and when it is flaring it hurts for me to breathe, too.  Those days are not fun and what you have sounds much worse, too.  I'm sorry you are dealing with this.

 

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 also are links to the gentle stretching exercises, malic acid/magnesium supplements and vitamin D3 supplements and how these work in the body.  All of the links are good so check them out!

 

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 1/6/2012 3:10 AM (GMT 0)

smilewinkgrin  I am so thankful for all the nice thoughts and information, it's great to have this, I really need it.

Today was a rough day, but I was more optomistic and I think it's because I found this forum.  I am still trying to figure out what to do with my job, I work in a loan center at a credit union, and there are four of us in a group setting, so every time I accidently out loud whimper in pain, they hear me. It's kinda embarassing, and yesterday one person said I swore a couple of times, I don't even remember doing it, kinda scared me though, the not remembering part. I have a bad memory but to swear out loud when I am in pain, I am worried that next might be my suppervisor who hears me. At least I didn't get in trouble for it, LOL.

My job is very stressful and so far, I seem to have about an hour a day where I am ok at my job, but the pain does interupt me for most of the day, making it difficult to concentrate. I know once I talk with my doctor and possibly start a different medication that may help, but it's hard to get through each day, even tylenol and ibuprofen don't help the pain, and I still want to sleep but have to keep going.

I get this newsletter from this clinic I go to, it usually talks about cancer, losing weight, and other normal medical conditions, but in this months it did have a small article about "Genetic risk factor found for FM" The gene Apo E4 and the environmental exposures (such as involvement in a auto accident) may contribute to the risk for FM.

It's not a huge article, it's in Cattails by Marshfield Clinic, Winter 2012, Vol 14, no. 1.

I am not sure if this can be found online, but it's an interesting find.

I hope whomever reads this is feeling well, and has a great day, take care.

Posted 1/6/2012 1:02 PM (GMT 0)
That's interesting Cici, thanks for sharing :) I'll look online and see if I can pull it up.
Sorry you had such a rough day yesterday, but I'm glad you found us and hope you'll stick around!
Wishing you a much better day!
Posted 1/6/2012 1:38 PM (GMT 0)
CiCi, having optimism really helps with this illness.  If I look at all the blessings I have and all the beauty around me, I'm far happier and have peace.  It helps take stress away and you know that stress can cause more pain.  So, if your job is stressful, start looking for the positive things about your job or the people you work with or the help your paycheck is in your private life.  If you look at the negative things you will be miserable and have more pain.  There is a good article in Fibro 101 about maintaining a positive attitude.  I read that quite a bit.  It's a good reminder.  I hope you like it as much as I did.

 

I used to take ibuprofen (600 mg) every six hours to help control the pain but, as I said in my other post, I can't take them now.  My doctor gave me Vicodin 5 mg. for the breakthrough pain....that's pain that is totally unbearable.  He only wants me to take 2 pills a day...and that really isn't much at all.  What I have done is I cut the pills in half and only take 1/2 as needed.  This has taken the edge off the pain and I have had no side effects from this.  All my reflexes, etc. are just fine.  But, as I said, I only take it as needed. 

 

The Curamin is taking care of a lot of the pain.  I still have pain but I can function and live my life.  I came to the realization that I will always have pain so I don't even try to be pain-free because I'd have to take too many drugs to accomplish that.  I guess you would call this acceptance of this illness.  AND, I'm thankful that it's fibro I'm dealing with and not something that is terminal.  When I think like this, it really puts things in perspective.  I know I can handle this...and so can you!

 

Try those gentle stretching exercises in Fibro 101.  They do help and you can do these sitting down while working.  Also, try to get up and walk around as much as possible.  You will be stiff but as you move you should loosen up a bit and all this helps with the pain.  Maybe this will help enough so you aren't moaning.  Just try to concentrate on what you are doing and not think about how you are feeling.  When I do that, the pain fades somewhat in the background.

 

I personally think there can be a genetic predisposition to fibro.  I have several cousins that have fibro also. 

 

I hope you have a better day today at work. 

 

Sherrine

Posted 1/7/2012 12:04 AM (GMT 0)
Thanks for the info, again very helpful. I did have a better day mentally, the pain was bad, but the nice thing is the mood seemed completely 180 from yesterday, people were joking and having fun. Most likely since it was Friday, but hey I will take what I can, I smiled more, and the pain I could tolerate more.

Hope everyone else has a great friday.

 

Posted 1/8/2012 1:50 AM (GMT 0)
If your job is full time and you have been there over a year you should have your doctor fill out FMLA paperwork for you. This doesn't have to be used all at once. It can now be taken when you need it. Your job will probley have you use any sick or vacation time first but after that you can use the FMLA and not loose your job over it. With a chronic illness it is a good thing to have on your side. Your HR department should now about the laws and be able to assist you. This way if you are even trying to get used to a new medication you could take the time off. I know some medications say you shouldn't even drive until you are used to it and for good reason. I know when I first tried lyrica I felt drunk and was stumbling over my own feet. Best of luck to you!
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