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Just diagnosed with Fibro

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Posted 1/20/2011 2:41 AM (GMT 0)
I was just diagnosed with fibro Monday.  I had severe pain in my joints, neck, shoulders, and up and down my arms and a very swollen gland on my left side  in October last year.  It was some of the worst pain I ever felt cry this is after giving birth to 3 children (27,25,17) and having a hysterectomy in 2009.  I was so scarred.  They tested me for the flu and menengites.  These were negative.  Two days later I was back in the hospital again the pain was worse.  It was the same ER doctor.  I was glad about that, he knew what we already looked at.  He tested for RA and said the sed test was negative.  They were thinking it must  be a virus.  I saw a doctor and he ran more test for RA but he brought up Fibro. The test showed negative for RA but my thyroid was off so he put me on meds for that.  I was on those for a month and went back in to be tested again.  The thyroid was better but I was still in pain.  Not nearly as bad as it was in October but I had more bad days than good.  In fact since October I have not had a day free of pain yet.  I think my only releif was due to medication I was already taking for a disc in my back pushing on a nerve. I have been taking tramadol and soma.  I see that many are taking these for Fibro.  I was keeping a pain journal and that showed that my pain was especially bad after a bad nights sleep and on rainy days.  The doctor perscribed me Nortriptyline to take at night for sleep and to keep taking the tramadol and Soma.  I hope this works.  I am trying to get back to work as I was let go right before I had all my orignal symptoms.  I don't feel like I can work full time right now.  I hoping the added meds will be what I need to get me back on track so I can work again.  I haven't even discussed the brain fog with the doctor but it is definatly there.  I first thought it was due to the lack of hormones from my hysterectomy and HRT but after reading some of these post it seems very similar.   I'm happy to have found this forum as it has lifted my spirits already.  I feel like I found people who understand what I am going through.  :-)
Posted 1/20/2011 6:43 AM (GMT 0)
Hi Erieislander and Welcome to the Fibro Family!

I'm sorry you're having such a miserable time but I am also sure you came to the right place for compassion and understanding. We all feel what you are going through because in our own way we have been there too.

Being winter in the Pacific Northwest (Washington state, USA) it's cold and most often rainy. But we alternate between icy cold and dry or above freezing and wet. Either way the barometric pressure on our bodies is something you can't explain to those who don't have fibro. I was telling hubby tonight that it feels like someone has my ribs in a vice and is tightening it down. I'm like you in that I have a lot of pain in the neck/shoulder/arm area. For me it leads to headaches when I over do it or am too tired.

The brain fog is awful, isn't it? Some days I hate that part most of all. I usually laugh it off but there are time I find a place alone and just sit and cry. It's how I let out emotions.

I had to quit work on my doctor's suggestion over 2 years ago and it broke my heart. I was teaching at a college and would have taught even without pay...that's how much I enjoyed it. But this body isn't going to tolerate any more. Like others with fibro I have several other "side dishes" that tag along for the ride. For me some of them are ulcerative colitis, I also have a disk pushing on a nerve at L5/S1, insulin dependent diabetic, a rare type of dermatitis, and the list goes on. Currently the arthritis in my neck and right hand is being darn cranky...grrrrr...lol

OK just did a Foggy thing...hit the submit button and wasn't even done. Anyway, I'm sharing these things about me to let you know you are among others who are not only like you and know what you live through but so you can see that when we say we care or understand...you can see that we do. The people here are very much like a family in that we care about each other. So I guess you're stuck with us now, girlfriend!! smilewinkgrin

Keep in touch and always feel free to email if you want to chat.

Warm hugs,
Chutz
Posted 1/20/2011 1:22 PM (GMT 0)
Dear Chutz,

Thank you, I like that I can go online for support from others with similar symptoms. I too have IBS, colitus, and diverticulitus it all adds up to a mixed batch of misery. I'm lucky that my girls are mostly all grown up. I just have a 17 year old daughter still at home. She is usually a big help, depending on her mood. My husband has been a big support. He has chronic asthma and had to quit his 25 year job and retire early. He is 10 years older than me. We both take care of each other. When I was working he was doing all the houswork and cooking dinner. He even wanted a Gorden Ramsey cookbook for Christmas. I was working 60-70 hours a week and just exhausted. We talked about if I go back to work it will have to be a less stressfull job and only 40 hours. We really need the insurance. He filed for dissability last June and was denied. We have an attorney working on it now. I feel so bad for those who don't have the support I do or have to go it alone with small children. It really makes me count my blessings when I am feeling sorry for myself. Thanks again
Posted 1/20/2011 4:39 PM (GMT 0)
Hi Erie, and welcome to our family, we really do understand what you are going through. I have had fibro since I was in my early teens and I am 51 now so I have pretty much been hit by everything fibro can throw at us. Except for and keeping my fingers crossed the migraines that so many others seem to have.
Over the years there have been many times where I would get so depressed because of the pain. There were many nights I would go to bed and pray that I wouldnt have to wake up again, because I knew it would just be another day of pain.

Then somewhere along the way I realized that I was letting fibro control my life and that it was time for some changes. Anti-depressants have helped me to see life in a brighter light and I now take one day at a time. I know that there are always going to be the hard days but now I realize that there will be good days too. I just always try to focus more on the good days than the bad ones.

My husband has MS and is on disability and I was also able to get on disability last March. We help each other out as much as possible. He gets to do the heavy lifting for me and I get him his coffee and his plate because he is so shakey all the time. We also have an eighteen year old that is in his last year of High School that is still home with us. We have 3 other boys and a daughter that no longer live with us.

I am sorry that you are dealing with so much pain right now and hopefully the meds they have put you on will help you. I will be praying for you, and please keep us informed as to how you are doing.
Gentle Hugs
Shirley
Posted 1/20/2011 5:14 PM (GMT 0)
Hi, Erieislander, and welcome!  I'm so glad you found us and joined in.  You have come to a good spot, too.  We DO understand what you are going through.  It's not fun but you can have a full and enjoyable life in spite of fibro.  You will learn tricks to help you out, like pacing yourself when doing things, and you will learn how to work around fibro to do what you want to do.

 

Be sure to check out Fibro 101...the first thread on the forum.  There are links to good information about fibromyalgia and you will learn a lot there.  I think you will "see" yourself there, also.

 

I tell everyone about some supplements that I use that have helped me a lot.  They don't help everyone but they are worth a shot.  They are malic acid/magnesium supplements and also vitamin D3 supplements.  Both of these help me with pain and fatigue.  There are links about these in Fibro 101 and it explains how they work in  your body.  Be sure to talk to your doctor or pharmacist to make sure they wouldn't interact with other meds you are taking.

 

Keep moving.  If you sit or lay too long, you will be stiff as a board and have more pain.  There are some gentle exercises in Fibro 101 that really do help and also you should find some GENTLE exercise that you can do daily.  I walk and swim and my exercises.  Yoga is another good one for fibro patients.

 

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 1/21/2011 3:45 AM (GMT 0)
Hi Erie, do you live in Erie?  I am in Pittsburgh is why I asked.  I'm sorry you are in so much pain, but then you fit in our little club here :-) . 

I have often wondered if my hysterectomy is causing some of my problems but I have a feeling it is the fibro.  It is great that you have  good support  from your family. 

You found a really good forum with very nice, informative people.  Welcome!!

Posted 1/21/2011 6:53 PM (GMT 0)
Veteran Member,

My husband and I enjoy boating and our boat name is erieislander for Lake Erie and boating to the islands in Lake Erie. I just hope I can still enjoy boating and fishing this summer. I hear that the humid weather can cause fibro flares. From May through September we have humid weather.
Posted 1/21/2011 7:16 PM (GMT 0)
Sure you can enjoy your boat!  You will learn how to work around a flare to do what you want to do. 

 

I used to live in the Cleveland area and would visit the Lake Erie Islands every summer.  We'd go to Put-in-Bay, Kelley's Island and others.  There use to be a winery called Lonza's, I think, that we would visit.  Do they still have the New Years Eve party during the Labor Day weekend?  That was always a lot of fun! 

 

So, nope, don't you miss those good times.  You control fibromyalgia, not the other way around.

 

Sherrine

Posted 1/21/2011 8:42 PM (GMT 0)
Hi Erie,

Welcome to the HealingWell Fibromyalgia forum. I am so glad that you have joined us. You will like it here, I gaurentee that. Everybody is so friendly, kind and supportive.

You will learn that taking life one day at a time is the only way to live. Especially with fibromyalgia. I hope that you start to feel better soon. Like was stated above, we have fibro, it doen't have us. We learn to cope and fight our way through the hard days. Sometimes just sleep. Sometimes that is the best thing to do. But moving around is the best. It keeps the muscles loosened up and keeps us energetic. Working for that is a slow process.

You will find that it is learning to live all over again. You acquire a lifestyle that works around the fibromyalgia. It can be done.

I hope that you are havnig a good day.

Take care,

Hugs, Karen
Posted 1/21/2011 11:18 PM (GMT 0)
Thanks so much for all your support! Yes Put-N-Bay still has all the party's. We went to Christmas at the bay a few years ago. It was pretty crazy and don't think we will do it again but it was a fun experience. We like the winery's and prefer Kelly's Island it is a little slower pace. Most of all we like to fish. Walley is my favorite but I like Perch and they are easy to catch. My husband does all the work and even cooks them. I just have to catch them. Even thinking about it now helps me forget about the pain.

I liked the spoon article. I shared it with my husband so he can help me with family questions. I have had several days with depression and tears but I'm encouraged reading others postings.
Posted 1/21/2011 11:45 PM (GMT 0)
Hi Erieislander,

Just wanted to welcome you :) The others have already said so much. I wish you felt better too. This forum keeps me moving on the days when all I want to do is curl up and stay put. Glad you found us!

Free Spirit
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