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mommateresa posted:
Hi, this week I went to see my fibro doctor, (I have MCTD) and was faced with some straight up facts to try and help my fibro. I take savella and lyrica (and then many others for the other autoimmune illnesses.) I thought I was coping - but it was brought to my attention that I AM NOT!

I have changed from positive, bubbly, go-getter me, to apathetic, forced smile, forgot what I was getting me! Pain meds and fibro meds were not changed. Diagnosis: bad dehydration and depression. I didn't even notice.

RX: Tons of water, exercise and A SUPPORT GROUP. She told me that I need to see how others deal with this - I am physically who I am but I don't have to change the heart of me - I feel as if I buried the person before this one and have already grieved my loss. I suppose I am wondering if I can resurrect her from the dead. Can I be me again or will the CHRONIC pain always be the reminder of who I am not?

I teach school and am the Elementary Assistant Administrator at my school. (Which I love.)

I would just appreciate any advice, really... anything.
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missist responded:
Hi..
You know.. after nearly 30 years of this--I think it is sort of like a series of 'self deaths' so you grieve but then you grieve again sometimes.

However-- it seems to me there is more hope now than there ever has been--I mean they are finally researching it, and the meds are better. I am in much much less pain than I was, still have other issues to deal with as they pop up--like depression, fatigue..

I do think talking to people about it does help. Talking to doctors is almost always MORE depressing. But talking to friends who have chronic illness seems to give me a feeling of peace and I now say to myself:

'hey you are OK, this is now part of who you are but you are a very much Worthy person and maybe have more depth than you would have had if life had been always sunny."

I also find that the fact that I'm not out running around so much means I have time to explore things like my art & writing talents, prayer, nature, my little pot garden.

I will add you to my prayer list and yes do be in a support group! I personally prefer to get support online cuz I live in rural SC and there's not much of an option otherwise.

Peace,
Mary
http://pokeberrypatch.blogspot.com
http://pokeberrypatch.etsy.com
 
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Wolfsong452 responded:
well now you've explained how I am exactly, along with what the pain management doctor has been griping at me for 3 years.

going to take your advice, water, exercise, I have the support group right here.

that's what I keep telling the Pain Doc. why go to their support, when I can come here and it's a heck of a lot more fun!
 
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missist replied to Wolfsong452's response:
I thnk the hospital in a town near me also has a support group--It might be good to look into it-maybe meet a local-almost- friend.

I was remembering the nice time I had recently with my gardening/thrift store buddy-- she also has chronic problems but seems to handle better than I do right now. It seems to me, when we were together we both were laughing and 'bubbly' as mommateresa was talking about.

I wonder sometimes if some of the depressive, negative part of our lives is due partly to the company we keep or don't keep-- it is good to get out and be with someone who is dealing with a lot and kind of understands-- you are freeer.

so maybe that is a 'suggestion' to find a friend who you can laugh with at things like forgetting if you took your pill 3 minutes ago. That always cracks me up--I cann't remember what I did 3 minutes ago sometimes!

A hobby like my garden interest & frugal shopping fun -- those take the mind off dwelling on things and give you more hope for your future. That you can still have fun. Not that everyone would have the same kind of hobbies I like--but that's just what I noticed.

Someone who 'gets it' is fun to know. I guess is my main point. So-- support group could be just 2 or 3 people laughing over lunch.
 
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dollbug responded:
Hello mommateresa and welcome. MiMi in NC....and I have to agree that your EX is very good....I do hope that whomever told you to exercise that they also stressed *gentle*.....even doing stretches can help, also gentle.

I would also like to encourage you to be sure and ask your doctor to check your Vitamin D level...which is also really important to a lot of people these days....I have read that the people who gets their Vitamin D level checked....over 85% of them have low Vitamin D. This is a simple blood test but you MUST ASK the doctor to run it as it is NOT included in the normal bloodwork that the doctors do. (why this is, I have no idea) Low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well. Do your own research on Vitamin D as I am sure you will find the research is interesting. (I know that I have)

There are still *issues* about Vitamin D....some doctors still do not know just how much people should take....so I think that we, FMers, have to figure out just how much Vitamin D has helped you/ or NOT....we are all different and what helps one person may or may not help you. There are some people here who say Vitamin D did nothing for them. There are many FMers who have found that Vitamin D does indeed help them cope better. You have to be your own judge and decide though.

Actually we, FMers, have to be the judge on anything and everything that we do. Each thing we try though we should allow at least 6-8 weeks of doing it before making a decision as to whether or not it is working. There are no quick fixes or things which work overnight. NOTHING that I am aware of.

It does take time and effort to find the *right combination of tools* that will make a difference in how you feel. So hang in here with us and learn all you can about what others have found to help them.

I am one of the FMers here who has learned how to *control my FM pain* by taking vitamins and supplements and doing other things as well. I tried different medicines in the beginning but did not find anything which really helped me without causing side effects and I did NOT need one more thing to deal with. So I did my own research and did a trial and error process to see what I could find that would help me.

Now, IF only I could find something to help with the chronic fatigue. I have tried different things for this as well but have not found anything yet that has made a difference. I continue to research this though and I am sure that one day perhaps I will find something.

I think it is great that you are able to still work. I worked for 14 years at a loan servicing company and my work ended in Dec 2005....2 days after I had surgery I was laid off. At the time I got laid off I had filed my 2nd workers compensation claim and I think that is why I got laid off. The company ended up and denied my claim and were also allowed to not pay my *disability benefits as well*....so it was a win, win situation for them. Not so good for me though.

Anyway....it is what it is today and I am unable to change this part of my life. I have learned that pacing, pacing and pacing even more is really important for me. I think that most of us are use to going and doing all the time....these days are gone for me. I have also learned that *stress* is a huge factor in how I feel and I try all of the time to keep my stress level low, which is really hard to do.

My heating pad is a good friend as I use it every day. I also use Stopain Spray as needed....(found at walmart for just under $8-....it is good stuff)....taking a hot shower at night using lavender bath salts in a stopped in drain is also good to help relax the body so that I can sleep better....Sleep and getting enough of the right kind of sleep is also a *must* for me.

I am sure that you will find some good *tools* that will also help you too.

Take care and good luck.


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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mommateresa responded:
Thank you all for your advice and taking the time to share with me. I have had my Vitamin D checked regularly since about 2005. It has been considerably low and I have done the 50,000 units, one a week since then. I did get it to normal once! Of course, it was summer time and in the frustration of taking such a large number of pills I stopped taking that one believing I could keep the level up with even a partial exposure to suns rays. NOPE... it didn't work and I have been playing catch up since then.

I believe the depression has begun to get better in just having it exposed. I am not normally a person who likes to be "down." I am a Christian and try to look at each day as a gift and each person in my life as a blessing. It hurts me to think that I am allowing my mind to stop thinking that way. Through prayers, and some serotonin re-uptake meds I think I am climbing back out of that well. The prayers are most appreciated.

Yesterday I was able to take my 3rd graders on our end of the year field trip. We went FISHING! Our theme has been, "Give a man a fish, he eats for a day. Teach a man to fish, he eats for a lifetime!" Fishing equipment has been all over our room from day one. We used the jargon in learning. Some days I gave them a fish... other times they had to bait up and catch their own. The point is--- I was able to last the whole day!!!! I am sore today and quite fatigued but I did it. A month ago, I don't think I would have tried. So, thanks for the prayers and encouragement. I feel the results.

God Bless.

I do a devotion each morning if anyone is interested.
javawithjehovah1.wordpress.com

mommateresa
 
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booch007 responded:
I had the same thing happen to me. after I met my neurologist..pretty soon she said "join a support group" and I found this home. I also during this path saw a physiatrist that said....HYDRATE and with only water. He took away everything else and made me realise that my poor body was asking for fluid (2 H's and 1 *O) Crap how stupid was I......giving it diet coke most of the time!

Welcome to the family, I am glad you found us. Dealing with MCTD is a challenge. Some treatable, others not so easy and no matter the path you are on it leads you to *pain** the dragon we DRAG around all day.

To the right in Resources is a post called "THE MEMBERS TOOLBOX" in there are tricks and ideas the members have posted over the years. Try and look thorough it. Up to the top is Dr.P: so many pearls of wisdom were from him! Check out the discussions under him.

Then just coming and dropping bye post a bit, HELP someone out (good medicine*). P R I C E L E S S.

We don't care what the post is if you need to get it out, place it here....we all know the road, the issues and sometimes the shoulder you lean on has a fix!

BIG thing I was given the moment I joined was the idea of the memory foam mattress. Man, It helped my night issues so much. I have a 6" one now rom overstock.com. The mattress touched all the trigger point zone I have and I tossed all niight to get off them. NO REST...(unless I was in a chair)

I am a nurse and right now a very busy nurse....I love what I do and who I am around. I stay clear of negative and look for the positive. Work is distraction and it is the strongest medicine I take! I also take savella but I can only tolerate 12.5mg once a day! Ha!..we are all so different.

I cannot do Lyrica or neurontin though it has been offered alot. I use a muscle relaxant and many supplements. Tramadol is my pain med, also on the low side....my main therapy I guess is the triggerpoint injections I get. Every 2 weeks for the last 10 years. I am almost staff in the neurology office! I love them dearly...

They are always so generous to me as well.

So, I am so glad you found us and I hope you listen to Mimi on the Vitamin D. Mine was 12...who knew? I am in an office all week and under ground, crap it adds up to no sun!!

Good luck on this new path.....
Hey why is that elephant wearing glasses?


His insurance wouldn't help with contacts! LOL

OK, hope the day is better then the last..........Nancy B
 
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mommateresa replied to booch007's response:
Thanks, Nancy. I think that this sight might just be the ticket. I have already started to make some changes based on things I have read on here. My next issue to research here is the mind. How to resolve the forgetting right in the middle of typing a word. Transferring the right hand letters to the left hand. Saying words that have no context to the conversation. You know, those annoying moments! (And difficult when teaching. LOL)

It is nice to make new friends who really "get it."

Two simple words that say so much...

I hope to be able to help others when I can say, "Yeah, I GET IT."

Be Blessed.
Teresa
 
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franr responded:
Hello Mommateresa
Its a miracle I was able to get on this site tonite. To everyone I have been reading but unable to email this site.Yes it is better today,more information,medications, support groups,pain clinics are available to fibro sufferers today. When I diagnosed in 1993 there was very little. They handed me a pamplet to read and I had to suffer alone.If not for support groups I would of never understand this illness.It is hard being in Education and dealing with children on a daily basis when you feel terrible.I know because I was a school nurse for many years.Actually after a terrible major flare this winter I have returned to work pier diem.Please donot despair if you talk to your collegues I am sure their are a few teachers with fibro and you can have a support group at work.As far as meds go it is a trial and error.And sometimes medications stops working. So if your not happy with your current MD find a new one who has experience with fibro. Rember we are are pulling for you here in this support group. Keep us posted.
Gentle Hugs
Fran
 
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Anon_2912 responded:
It is not easy, but as my mom used to say "life is what you make of it".

For me just staying positive & continuing to work helps my mental state A LOT!!!

The pain, well it is not killing me although it feels like it is, but it's not. So I just take it one day at a time...It is how God intended it, he did not put one week in an entire day...So why try...
 
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mommateresa replied to Anon_2912's response:
Thanks friends, I also try the one day at a time. It is my faith that keeps me going... that and a husband that is completely understanding about this and never has made me feel worse about feeling worse. I think we all know that some days are good and some bad and yet again... some awful. I work with some totally amazing people who are there for me. I suppose that it is ME who is not "there" for me sometimes. I begin to feel guilty. I do not process information LIKE I USED TO. I USED TO teach a split class of 3rd/4th simultaneously. I kept it straight and we laughed that I only got their names messed up a handful of times. Now?? I struggle with one grade and 8 children. I USED TO be able to type 75 words a minute with no errors. Now, I type each word probably twice as me and the backspace button have become good friends. I USED TO be able to have most of my papers graded, recorded and returned by that day or the next morning. Now, it is Monday morning. (And then I am working till 9 at night.) I USED TO.... Thus the guilt. Everyone is patient with me but me.

I am working on this aspect now. Trying to adjust to the new person who has taken up residence in my body. It is better to allow her to come and live than to wait in frustration for someone who might not return.

Thanks to all for some good advice and encouraging words. God Bless -

II Cor. 12:9 (MSG) At first I didn't think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,My grace is enough; it's all you need.
My strength comes into its own in your weakness.


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