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Posted 9/27/2011 10:42 AM (GMT 0)
Hi, this is my first time posting anything on the internet but I've been feeling
down since my doctor confirmed it was fibromyalgia and I don't really have anyone to talk to. I've had depression for fourteen years and three years ago I finally found medication that made me better. It's weird, I'd never noticed how messed up I was feeling until I got better. I could go outside, talk to people, go out, it was great, like being born again :-)

Then I started feeling pain, it started in my legs so I could no longer walk to
school and needed to take the bus, then in class, my arms started getting soar to the point where writing became a challenge and it kept getting worse
I couldn't sleep anymore due to the pain and nothing seemed to make it go away. Finally I had to quit school and my family thought I was just lazy and gave up.

I spent a year seeing different doctors, taking different tests and finally it turned out to be fibromyalgia. My sister stopped speaking to me because I got angry at her for months of screaming at me because I felt too tired or too much pain to do stuff.

I don't know if it's like this for some of you but my symptoms have just been getting worse overtime, I'm at a state where I can't even sit anymore so much it's tiring, so all I can do is spend my day in bed.
I feel useless and I fear this is what my life will be from now on, it scares me.


Thanks for reading my ramblings.

Post Edited (SleepingDaisy) : 9/27/2011 4:45:38 AM (GMT-6)

Posted 9/27/2011 12:10 PM (GMT 0)
Hi SleepingDaisy,

I like your name. I love flowers.

Welcome to the Fibromyalgia forum. You are amongst people who understand here. Now that you got a dx, you know what you are up against.

We have a thread, called "fibro 101" It is the second thread on the forum. Take a look at it and see if you see yourself there. Also there is a lot of interesting things to read. Stretches that you can do sitting down to loosen yourself up.

I think that the trick to fibromyalgia is to keep moving. I was in bed for almost two years with it. Finally I got on somse medications that would help me with fatigue and pain. I was able to work a job a coulple of years ago. I only worked a few months, but it was nice to know I could do it. So never give up. Sounds like you are young. You got a lot of living to do. Don't let fibro stop you. Keep posting and we will help you as much as we can...

Hugs, Karen
Posted 9/27/2011 12:39 PM (GMT 0)
Hi SleepingDaisy,

Welcome to the forum. This place is full of great people nand every single one of them has a heap of helpfull tips, a shoulder to cyber-cry on and pats on the back whenever u need them. Just beeing here amongst these wonderfull people really can make a world of difference.

I Don't know if i should say: i'm happy you got you dx OR i'm sorry you got your dx... Sometimes people are happy that they finally have a name for what they go trough, yet others keep hoping it's something else, something more treatable and those people are generally less than happy with the dx. So whatever kind of person you are you can cross out what suits you best ;)

I'm sorry to hear that ur sister is not speaking to you i hope that in the future she will come to understand what you are dealing with. When you're in the Fibro 101 thread look up 'the spoon theory" it helped me a lot in explaning the illness to family and friends, i hope it might work for you too.

If i can give u one piece of advice to start of with it's: move around! Even if u only manage to walk half a mile, at least ur doing something. Lying or sitting all the time tends to only make us more stiff and rigid and doesn't do us much good at all. The key is finding a balance betwee moving around and resting. Swimming is also excellent exercise because as u are using your musckes the water is also providing much needes support. Relaxation techniques is also something we can all benefit from.
Try looking up some easy yoga positions, i use that on occasion.

All the best of luck and i hope you enjoy this place and that you get something out of it.

Fiona
Posted 9/27/2011 3:21 PM (GMT 0)
Hi Sleeping Daisy, welcome to the fibro family! I'm sorry for your pain. We do understand the frustration of living with chronic pain and we help eachother find ways to help with it.

A combination of exercise and relaxation therapy has helped me. I have found that walking to be wonderful. I know that it sounds painful...but if you don't move you hurt all the more...your legs become stiff and your muscles will become weaker. Start out slow and do gentle stretching before each walk....slowly increase your distance. I have fibro and other conditions that make it difficult to walk sometimes, but I know if I didn't exercise I might be in a wheelchair and I don't want that.

Relaxation therapy is a combo of deep breathing exercises and meditation. It really does help allieviate stress and helps with the pain. Heat is a fibromites friens...soaking in a warm bath or using moist heat microwave heating pads really help soothe sore muscles.

If you haven't already, you may want to get your vitamin D level checked. Many of us were found deficient and that will add to your pain. Getting on prescription therapy to get your levels in the normal range really helps and then continue taking a supplement every day is beneficial.

I'm glad you have joined us...post often, we really care!!!

Hugs, Robin
Posted 9/27/2011 3:28 PM (GMT 0)
Hi, Sleeping Daisy, and welcome!  I'm so glad  you found us and joined our family.  As others have said, you really need to get out of bed.  That's a chunk of your problem.  If you sit or lay too much  you will be stiff as a board and have more pain.  You need a gentle daily exercise that helps.  I walk for my exercise and swim, too.  When I started out walking, I couldn't go far at all but I didn't give up and went out the next day.  Now I walk my dog at least a mile every morning before breakfast.  I don't feel like going, but I do and I always feel better and have more energy, too.  So it really is well worth the effort.

 

Did your doctor put you on medication for fibro?  I use ibuprofen with food, extra strength Tylenol, malic acid/magnesium supplements, and vitamin D3 supplements for pain and fatigue.  I recently developed an ulcer most likely from the ibuprofen so I can't take it for a couple of months and I sure notice the difference. 

 

I see you were directed to Fibro 101 by Karen.  In there you will find information about malic acid/magnesium supplements and vitamin D3 supplements.  Also, good starting links are called Symptoms and A Thorough Explanation of Fibromyalgia.  You will find links that are good to print out to show family and friends to help explain what you are going through.

 

But, getting moving will be your biggest help.  It will help with your depression, too.  A positive attitude helps soooo much with this and there is a good article about that in Fibro 101. 

 

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 9/27/2011 5:07 PM (GMT 0)
Thank you all for your kind words and encouragements. :-)
I'm glad I came to this forum.

I used to go walking, twice a week was the most I could do but
since the start of summer, fatigue seemed to have become more of a
problem than the pain itself. At this time sitting up or going to the living room seems like all I'm able to do.
Posted 9/27/2011 5:59 PM (GMT 0)
Thanks for joining with us. You will learn so much tools that will help your Fibromalgia. I have improved my quality of life since I been listening to others. Some things works better for one and not the other. Doing some od the simplest excercise seems like a great start for you. If you have questions or need to vent this is the place. Good luck and glad you found us!
Posted 9/27/2011 7:08 PM (GMT 0)
Daisy, right now I have a moderate to severe case of anemia.  Talk about fatigue!  Yikes!  I have zero energy, my arms and legs are like rubber, and, because I can't take ibuprofen that I've used for pain for 24 years, I have lots of aches and pains.  BUT, I walk my dog every morning. 

 

I would love to stay in bed and sleep but I know my pain will be even worse if I do that.  I can come up will all sorts of reasons why I should stay in bed, but I know that's not what is best for me.  So I get up and do it. 

 

Because of the anemia, I am resting far more than usual, but I'm still functioning.  Tonight, my daughter and three of her friends are coming over to set up my new TV and move several pieces of furniture for me.  So, I'm making dinner for everyone.  Just thinking about it right now is pretty overwhelming but that's my way of thanking all of those precious people for their help.  I WILL do it and I definitely WILL pat myself on the back when I crawl into bed tonight.

 

You will be amazed at what you can do if  you try.  Take a step at a time.  Pace yourself.  Honestly, staying in bed will only make you weaker and  your muscles weaker and have more pain.  Please give it a try...even if you only walk a few doors down.   Tomorrow walk a few more doors down than today, etc.  And, before you know it, you will be getting out and enjoying life again!

 

Sherrine

Posted 9/28/2011 7:52 PM (GMT 0)
Ak Angel: Thank you for your welcome :-)

Sherrine: Thank you, I'll do my best to stay active.
you'll be my inspiration :-)
Posted 9/30/2011 7:25 AM (GMT 0)
Hi and welcome! May I suggest that you get a complete physical with attention to Vitamin D? I know it's mentioned before, but when I was in the state you're in, I felt like I was dragging cement blocks behind me. I also have a problem with my immune system-low IgG's. My Dr. gave me a shot of steroids for all of the pain just a few weeks ago as the pain level felt out of control and also a shot of gammaglobulin which would only help if your immune system is faulty. As the others mentioned, try to walk a little and stretch gently, but get some blood work. Can you go to school online? That would keep you on track. And don't forget to look at all the beautiful fall flowers and meditate on that instead of the pain. I really hope you feel better soon. Take Care, Anne
Posted 10/1/2011 9:14 AM (GMT 0)
Thank you Anne :-)

I did have a complete physical and everything was fine except for my
vitamin B12.

Going back to school online, that's a great idea!
I think I will try, thank you smilewinkgrin
Posted 10/1/2011 6:05 PM (GMT 0)
SleepingDaisy, all the advice I have seen in answer to your post has been excellent and many of us reading this will also take heart from it. I know how difficult walking can be and I have found something that has been helpful to me. I purchased a pair of inexpensive Nordic Poles and found them to be helpful on bad days. I don't use them exactly as dedicated types do but more as an aid and a support.

Also when walking it is better to start with even just 10 or 15 minutes at a time and over a period of weeks just work your way up to longer times.

I wish you well and as someone else said, you have a lot of living to do, you know that old saying, the longest journey starts with a single step.

freddygirl
Posted 10/2/2011 3:20 AM (GMT 0)
Hi, SleepingDaisy!

Welcome, and don't despair--your life has changed, but with information and lifestyle changes, you can be more functional, even if you can't work outside the home. My FMS got so bad, I was confined to a wheelchair, but I'm able to live a semi-productive life, so don't despair!

Very important: Take a warm shower the first thing you get up. Moist heat is your friend!

The suggestions upthread are important, too, so I won't repeat them.

Just know that you've found a great place to share experiences and find hope. I developed FMS in the late 1980's, long before the internet and forums like this, so I was really scared and felt like a medical freak because the doctors couldn't diagnose me (until, finally, in 1997, I got the diagnosis!).

Your diagnosis is not a sentence--it's identification of the enemy, so that now you can fight back! :)

Never give up!
Posted 10/2/2011 3:28 AM (GMT 0)
Sleeping Daisy, do you remember what your B12 level was at? Mine was way down a year ago so I went for weekly B12 injections and now I'm monthly. I hope to get it rechecked soon to see how I'm doing. I was also deficient in Vitamin D and magnesium at the time the original labwork was done, so they started supplementations for them, as well.

To make a long story short, I've gone from taking three naps a day to adding a second job to my schedule. The fatigue was so overwhelming before I was treated (someone's description on here about dragging concrete blocks behind me is spot on). I'm still tired and have days I have to crash and burn, but life is much-improved since I started the B-12 injections. I hope that your doctors figure out something to help you, too.
Posted 10/5/2011 1:06 AM (GMT 0)
Freddygirl:Thank you, I have been walking everyday for a few days now.
I can't go very far but like you all told me, I will start slow
and try to go a bit further everyday. I have the chance to live
next to a park so I can rest every time I reach a bench. :-)

Hypervee:Thank you for your welcome and encouragements:-)
I was pretty scared when I got the diagnostic but since I've been
chatting with you guys, I feel better.

CrushFibro:Thank you:-)
I don't remember how low my B12 level was,my doctor did
suggest that I take injections but I chose the B12 pills instead.
I have to take naps during the day too, I hope the B12 helps.
smilewinkgrin
Posted 10/5/2011 3:39 AM (GMT 0)
Many of us have absorption problems (which may be why we are deficient in certain vitamins). That's why my doctor has me do the B12 injections instead of the pills because it goes straight into the bloodstream. Just something to think about if you think you have absorption issues of any kind.
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