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kmrobertson1968 posted:
Well I was diagnosed with this condition about a week ago...I have had these symptoms for over 10 years...numerous doctors, surgeries and diagnoses..I am 44 years old, have always competed in sports, riding, swimming, fishing....and numerous other activities that I can no longer do without spending at least three days recovering from them...I had another surgery in July, which had complications from and since then..I have had extreme pain..more so than before..I cant get any relief and unlike some of the post I see my pain does not move...I have it it my neck, shoulders, legs, arms, feet, hands, and migraines to go with it...headaches everyday...I am exhausted 24/7 I dont sleep hardly at all and when I do find something to put me out...I may sleep 12 hours or more...then wake up exhausted...I am gaining weight like crazy..but I dont hardly eat, have no appetite...and am not sedentary..I do normal things..just hurt at all times doing it...I am having a hard time with the fact that I may have to live like this for the rest of my life...I am at my witts end and do not know what to do...This is severe pain...not just aches..but I have trouble getting up and down off bed, out of chairs, even to go potty is a chore...I have several other things wrong and dr. says it could all be because I have this disease...any suggestions...they think I am depressed...I am just angry...angry that I cannot function...cant work...I dont know what to do...
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dollbug responded:
Hello and welcome.....MiMi in NC...sorry that you are dealing with the wrath of the dragon.....it really stinks, don't it? But we do not have a choice but to deal with what we have been blessed/cursed with. As I am sure you already know....it is NOT EASY. You should indeed learn all you can about this mean and ugly illness. It does take time to figure out just what your body needs. We are all different and what works for one person may or may not work for you. You will have to just try different *tools* to see what *fits and works for you*. I wish there was some sort of *magic pill* which would work for all of us, but I do not think there is one. But I do think that those FMers who have low Vitamin D.....might just benefit and improve their pain levels by getting their Vitamin D level back within the *normal range*. I know that this sure helped me in many ways.

So I would encourage you to be sure and ask your doctor to check your Vitamin D level. It is just a simple blood test....but you MUST ASK the doctor to check it....as it is NOT included in the normal bloodwork that the doctors do. Low Vitamin D can cause people to have additional pain and it can also affect other illnesses as well. The best part about Vitamin D is that it is a cheap fix as well. It does take time though to get the levels up and to kep them up.

There is nothing *simple* with dealing with this illness. Everything takes time and effort.

I would encourage you to check out the info under *tips* and *resources* here....there you will find some good info. Be sure and review the *member toolbox* too. Perhaps you will find some good *tools* that you might want to try.

Hang out here with us and I am sure you will soon find something that will help you cope better.

Take care and good luck.


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

 
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booch007 responded:
Good morning KM,

So glad you found the board, though it looks quite slow for us as I looked through quickly. Spring must have everyone busy!

As Mimi asked look to the right under resources and for me, I ask you look for the MEMBERS TOOLBOX. It was made years ago and is a snapshot of what we do for help.

Look up under DR Pellegrino and look in dhis discussions, he left a footprint that will be in our hearts forever.

You didn't share the meds you have tried? I want to say the first thing I learned on this board years ago was a memory foam topper for the bed.....P R I C E L E S S. I was sleeping most of the time in a recliner. As you lay on the sore spots of your body they wake you up enough to take away the night.

You may not even realise this is happening. I just told neurology I toss all night...and I toss counter clockwise! Not that that part mattered , but you never know.

It was the (for me) tirgger point sites causing me to turn off of them....so I didn't really wake, but I never got restorative sleep. I have a 6" topper on the bed from Overstock.com now....almost need a ladder to climb in bed ! Ha! But it is a priceless tool for me.

Make sure you have your Vit D, Magnesium and Vit B in line and some also use CoQ10. All these are good for muscles and nerves and Vit D...runs the show it seems. Have it checked as Mimi says.(Her Mantra).

I also talk about the book I love, FM and Chronic Myofascial Pain, a survival Manual by Dr Devin Starlanyl. Please look into it on Amazon.com. I paid 19.99 and it is with me always when I get stuck on something. I know my body now.....you learn your triggers and what the line is not to cross. When you said you pay for next 3 days....that was me too...

Hydration is not over rated.....I can reset in 24 hours now, which is so much better then before. I only drink water as that is what the muscles ask for, not caramel colored chemically adjust fluid.......About 2 liters a day. It helped with the stretching and smooth functioning to the muscles.

Oh I could talk forever.......Good luck onthis journey, stay here and post anything youneed and know we understand and care about you. Hugs, Nancy B
 
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missist replied to booch007's response:
Hi KMR..
For me I had much more severe pain early on--the first 10 or 14 years. I didn't know I had it for a few years or what it was. I thought I had 'rheumatism' as in Granny with a jug of moonshine for pain and an old lady shawl over her shoulders huddled up in a rocker. I was about 24.

LOL. Yeah.. that's just really not cool.
I had to quit my job at the time, I worked in a nursing home and really loved it but it was very physical and I just could not cope.

Its now going on close to 30 years. I did have a remission of sorts for maybe 7 years? Still had symptoms but not the everything hurts thing. Eventually I got to where I do still feel like an old lady and the remission is gone--but I don't have as bad of pain as I used to in the beginning-- other symptoms though and pain--just it is controllable to a point. Have also had osteo arthritis from my 20's which is getting a lot worse now.

Depression does run with this thing--so it won't hurt to take something for that-try it anyhow--I had to try a few before I was thinking it helped. It does help with some of the pain as well as with your outlook.

Angry is not the worst thing to feel. Use the anger energy to get informed--you'll end up knowing far more than any doctor you meet. Some of the info out there is not going to fit you, but you may find some things that do help.

Anyhow Welcome!
Mary
 
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Anon_35595 replied to booch007's response:
Nancy, Hi, I'm Debbie and I used to hang around this site and post occasionally, but it has been a long time till today. I have to tell you, you know what you are talking about and gave excellent advice to kmrobertson. Even the memory foam topper, I'm on my second one, but only because my DH and I got a bigger bed. wow 6 inches is big, mine is 4 and 5.0 density , but it still feels like heaven, I know my pain in the mornings was worse before I got mine. Also, the high density is part of the magic of these toppers I'm curious. Is your really heavy? Mine weighs 65 lbs. I wish every single person with Fibro could have one.

Also a great reminder about drinking enough water, it can make a difference. Stretching in the AM helps, and pace, pace, and always pace!!!! I know my limits now, learned the hard way. I can do a few loads of laundry in a day, or buy groceries, or cook a decent meal... only 1 of these a day, or any number of normal daily activities, use to do it all without a second thought. So here is my mantra--- Only one activity a day or else I pay! Okay sometimes I can't do anything, and sometimes I feel nearly normal, and over-do. Not a good result when I do more than my body says I can.
It is nice to see you, still are here Dollbug! You are so faithful to this forum. I hope maybe i can join back in the conversation here once in awhile. Take good care
 
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booch007 replied to Anon_35595's response:
Thank you for the hug Anon.
My memory foam is from Overstock.com and it is I think 3" of MF and 3" of the blue foam mattress from the past. YES it is so heavy and it was tough getting it on the bed. I NEED A LADDER to get IN BED! Ha! but it is heaven, even DH is in love with it. We miss it if we are traveling.

Water is the only way I woke up to see I could stretch and move the muscles. An ah-ha moment. Hydration is big but then not the answer. With all the reading all the knowledge and all the best doctors around me.........there is no cure for me* I am better and better is good enough to have my life.

Strongest med: distraction'
Best assist with pain : Soma and tramadol
Assist with night: Foam topper

That is my top three. Thanks again: Nancy B


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