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Hi new here...just diagnosed and in a lot of pain...

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Fibromyalgia
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Posted 7/10/2012 1:20 AM (GMT 0)
Hi. My name is Joanna, I am 41 and I was just diagnosed a few weeks ago. I have had a series of health issues in the last 10 years that I believe led up to this. Thyroid cancer, TMJ for 20 years, stress, tendonitis in both elbows from RSI at work, numbness/tingling in hands and feet, depression last year. I am remarried with 6 kids who live at home, work full time and commute 2 hours a day. I am also Chair of my work Union. I can't stand feeling like this as this is not me...I am a go getter who never sits down, so this pain is so debilitating at times I want to cry. I started therapeutic water therapy which feels great...wish we could live in the water!!! I also had a therapeutic massage today from a wonderful woman who also went through the same thing as me....she also let me vent and cry. It is my first time on a forum and it's comforting to know I am not alone. What bothers me the most is my husband thinks it is 'all in my head'. For those who have had it for a while, does it get any better?? Thank you
Posted 7/10/2012 1:34 AM (GMT 0)
Welcome momto6! I think you will find most people here to have a very similar experience in that we were all very active before fibro hit us and stopped us in our tracks. I know I was working 12 to 14 hour days and never slowed down. smhair
As for the pain my first flare was by far the worst so far. It is so important to find a doctor that treats and beleives in fibro. My doctor has worked with me to find what medication works best to manage my pain. I'm happy to say after about a year I am able to work again but I had to dial it down. There are still days that I work longer hours but not every day and I often pay for it later. yeah   You have to learn your limits.  This also goes for having fun.  I have found even after going out with my hubby to the movies I am so tired and hurt more the next day.

If you haven't done so already take a look at Fibro 101.  It is very helpful.  Everyone here is so helpful.  As far as your husband that is pretty comon.  He may come around after he is educated.  The spoon theroy on Fibro 101 would be good for him to read.  nono

Again, Welcome! smilewinkgrin

Posted 7/10/2012 3:47 AM (GMT 0)
Hi, Momto6.

Wow, you have a full plate! Unfortunately, it's hard to keep up such a busy life with fibro. As Kidz Mom said, we can do more again, once we've learned how to pace ourselves. Probably never again what you used to do, but - you can still have a good life.

It took my hubby years to understand that it wasn't all in my head (this was back in the Dark Ages as far as knowledge about fibro) and it really caused a strain in our relationship. He didn't understand why I couldn't do what I used to, and I didn't understand why he didn't understand - it was hard!

Hope you stick around, I'd like to get to know you. We are here to help eachother.

Debbie
Posted 7/10/2012 6:15 AM (GMT 0)
momt06- Welcome to the fibro forum! I am glad you were able to find this site. It has been a life saver for me. I came to this site extremely ill with fibro and numerious health problems. I had tried so many things to the point I wanted to give up. I finally began to get great ideas from other post on how to manage fibro. I continue each day to learn so much more on fibro. I am reading an excellent book on fibro now. I wish my Dr's have shared this with me before. It kind of makes mad all these years I felt left in the dark. You are going to be blessed to get an early start on managing your fibro.

My husband use to get frustrated with me due to my health. It has taken a lot of years to get him educated. I would let your huband read as much on fibro as you do. It really has helped my marriage.

I am happy to say that I finally got a good treatment plan for my fibro. It took some time to perfect, but I am so much better. I did have to stop work and I know that is one huge reason why I am better. I did have several other health problems for stoping work also. There is many people able to keep working while having
fibro.

I think fibro gets only better if you are willing to make a few changes in life. Things like reducing stress and slowing your pace of life down and etc. I could go on and on. Once you start reading info on fibro, you should get some ideas. I have found out the more I keep my life simple and the treatment simple the better I have done.

You will find out we all react diifferent to treatments. It like a trial and error method. I would recommend you ask your Dr. before trying something new. Even the simplist vitamins can cause major problems. Feel free to post and ask questions. This forum is great for support. I hope to see you around.

Post Edited (ak angel) : 7/10/2012 12:19:02 AM (GMT-6)

Posted 7/10/2012 10:59 AM (GMT 0)
Hi Joanna,

Welcome to the fibro forum. I am sorry you have such a commute to work. Two hours one way? That is a lot of time to be sitting. It must be hard at times. But it sounds like you are able to do it, which is fantastic!!!

Do check out the fibro101 thread, it is the first thread on the forum. You will find a wealth of information there.

Finding the right medication is like trial and error. It takes time and can get frustrating, but once you get there, you will be happy. It is nice to finally find something that helps with the pain.

I hope that you keep posting. This is a wonderful place to come and visit. You can learn so much here. It is nice to know you aren't the only one going through this. We deal with the pain and fatigue everyday. Some days are better though than others.

Take care, Keep posting...

Hugs, Karen
Posted 7/10/2012 12:27 PM (GMT 0)
Hi, Joanna, and welcome!  You have gotten great answers already.  I've had fibro for decades and have still had a full and enjoyable life in spite of this illness.  I had three children and they are all adults now.  I have always managed to find ways to work around fibro to do the things I want to do.  I always try to do things, even if I think I really can't do it, and most of the time I happily surprise myself!

 

We are all very adaptable so I think you will find that this isn't the "tragedy" you might think it is right now.  Once you find what helps to control the pain and fatigue of fibro, you will be well on your way.  I use some supplements to help me, along with ibuprofen and Tylenol.  The supplements are malic acid/magnesium. vitamin D3, and an alternative pain reliever called Curamin.  I also do daily gentle exercises but I'm sure you get plenty of exercise with what you are handling these days!  Pacing yourself is a must.  It all gets done but in a different time frame.

 

Be sure to read Fibro 101...the first thread on the forum.  There are links about fibro and you AND your hubby will learn a lot there.  Good starting links are called Symptoms and A Thorough Explanation of Fibromyalgia.  Along with these, a good thread for your husband to read is the one called Doctors Respond to New York Times Article.  Learned doctors are responding to an article that basically was saying fibromyalgia is all in our heads!  NOT!  This might help him understand more.  You look just great but that's not how you are feeling.

 

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 7/10/2012 1:27 PM (GMT 0)
Momof6, I know where you are coming from I had 4 kids @ home and I just finished full time school, and had a million this gs going on, I was dx with fibro this past March and I am still learning my limits (forgot what limits meant the last 2 days and feel it today :-) . I have a Dr that is amazing g with Fibro and when I start to tell her what's going on she smiles and says yep, and you probably have...... too. She can tell me what is going on every visit! What has helped my hubby to be with this and my limits, he attends almost every visit so he is learning g with me, and when I look things up on the internet I show it to him. He reads things and will say OMG ! That's you !!!!! Lololol so learning together has a godsend for us. It can get stress full on bad fibro days.

I know some ppl can't take it, but I take savella 150 mg a day, tramadol 50 mg when needed, 10 mg cyclobenzaprine when needed.

My choices were savella, cymbalta, lyrica and after researching savella seemed best for me, it has really been great ! It is a gradually increased medicine but has really done wonders for me! When I first started it, and anytime it is increased I do have some side effects but learned through my Dr to give my body time to adjust and I am glad I did. I have heard of a lot of ppl who try the others and it works for a while, but then doesn't. My Dr told me savella was the only one that was created specifically for fibro. But while you are adjusting to any of the medications you choose to take, just know it will take time.....My dr also has me on 800 mg of magnesium a day, and 25 mg of DHEA, the DHEA helps mini ize stress and stress causes flair ups :-)

Also for my hubby to be, he reads posts on here with me and sees others with my symptoms. And I four d this forum approx 2 wks ago and it has been as helpful mentally for me as the meds are physically!

Hope you find the right meds for you :-)
Posted 7/10/2012 3:08 PM (GMT 0)
Like others have said here my journey with fibro has been a bumpy road and full of pot
holes. To find the right meds and supplements and doctor has definitely been trial and
a whole lot of error. Although I still don't feel great at least I feel stabalized.

I have to pace myself, try to get good sleep, watch what I eat, take supplements and
some meds. If I do these things my pain levels go down and my energy goes up.
Posted 7/10/2012 3:20 PM (GMT 0)
I, too, work in a stressful job, with lots of varied demands on my time and attention. You do the best you can, and learn to manage your condition with your job. The downside, IMO, is when you need to use all your down time to reboot for the work ahead. Sometimes, one bad day or unexpected pain can send the whole thing into a tailspin.

Learn to manage your body effectively. Sleep well. Eat properly and often. Avoid the caffeine and sugar high. stretch. Exercise. Find the medication/supplement schedule that maximizes your strength.

I take: tramadol, an antidepressant, and generic ambien for sleep. For supplements: multi, D3, niacin, fish oil, magnesium, Co enzyme Co Q10, curcumin/turmeric, and probiotic.
Posted 7/10/2012 3:33 PM (GMT 0)
Hey there Momto6.. You certainly are busy. I was recently diagnosed as well, I am into the 2nd month of my diagnosis. Still working on the proper cocktail, in-fact waiting on a call from the dr. now.

My husband is the one that holds onto the reigns for me. He tells me to sit, to relax, and to take a nap. He has been very helpful with me trying to wrap my head around what is going on with my body. However, I know it does take a toll on him as well. I found a great book on Amazon called The First Year Fibromyalgia: An essential guide for the Newly Diagnosed. I have been reading bit by bit, trying to figure out what it is all about. This book is written by a woman in the healthcare field that has fibromyalgia as well. It has helped me somewhat. Makes me realize that it is not all in my head. Talks about limitations, diet, relationships, etc... May be a good starting point. :)

Wishing you all the best, and look forward to future posts.

-Amy
Posted 7/10/2012 10:36 PM (GMT 0)
Momof4 , thanks for book info !!!!!
Posted 7/13/2012 4:07 PM (GMT 0)
Hello everyone,
Thank you for replying and all the words of encouragement. I tried to go back to work on Tuesday and ended up leaving after 5 hours due to severe pain. The pain is mostly above my waist but all in my hands which feel completely arthritic. I am shocked to see how much worse I got in the last month. I've always had pain here and there and everywhere including my hands and numbness/tingling. Is this what they call a 'flare up'? I am on Cipralex for the depression I experienced last year but am depressed that I gained 30 pounds because of it. I hate meds and want to stop them altogether but my doc told me not to. I will check into the Magnesium. Someone also mentioned putting Camfer on my hands and shoulders when I wake up, anyone try this?? I just want to go back to work to my normal self because this just sucks!!
Thanks
Posted 7/14/2012 6:23 AM (GMT 0)
Mom have you ever tried calcium with vitamin d3? Plus magnesium helps with the muscle spasms. These made a big difference for me. If I am away when I cant use a heating pad, I just buy those hand Warmers or they make a great one for the back. It helps my muscles a lot.
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