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A little help please?

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Old 08-29-2005, 09:05 PM   #1
Join Date: Aug 2005
Posts: 99
kelley_bsb HB User
Unhappy A little help please?

Hi all, I'm pretty convinced I have FM and I guess something called Chronic Myofascial Pain and in the process of getting diagnosed. The problem is I was always kind of an athlete and still continue to try and swim. My coach is understanding and allows me to get out early and I don't have to do any of the harder workouts but the other girls on the team don't understand. They get mad because they are 'tired and sore too so why should i get out of everything?' It hurts me a lot because all I wish I could do is be able to swim. I haven't been diagnosed with anything yet so I don't really know what to say to them.
Also, school starts soon for me and I am really scared. Last year was hell for me and I have gotten even worse since then. The pain is bad enough trying to sit in the desks all day but I don't know what to do about my memory, I feel like I have Alzheimer's. My teachers would get angry with me last year because of my random memory lapses and at times I'd fail tests because all of a sudden I couldn't remember absolutely anything. Or I would be so exhausted I'd be falling asleep in class, sometimes I'd have to go to the nurse and just lay on a bed for a few periods. I don't know what to do. I've heard about something called a 504 Plan but I haven't been diagnosed with anything yet.. Sorry this is so long, I'm just so scared and frustrated and lost, if anyone out there can offer some kind of help or insight into my situation I will be grateful beyond belief.

Last edited by kelley_bsb; 08-29-2005 at 09:09 PM.

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Old 08-30-2005, 04:38 AM   #2
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rosebuddy HB Userrosebuddy HB Userrosebuddy HB Userrosebuddy HB User
Re: A little help please?

My heart goes out to you. Believe there is an answer. Please keep seeking help here where you will receive unconditional love and understanding. We know how you must feel. There are ladies on this board that know more than doctors do about fms and cmp and are eager to help you. I also recommend a book by Devin Starynyl "fibromyalgia and chronic myofascial pain." She covers everything we go through.

This is my advice:
First get a definite diagnosis and therapy for the cmp.

Get a note from your doctor(s) and follow the protocol of your school.

You will encounter more people that will not understand fms and cmp even though between 4 and 10 million people have it, most people haven't heard of it. I have my own short explanation that I give to some people. Others I just tell them its too complicated. We don't have to prove to the world that we have an illness.

Try to keep exercising. With the short-term memory loss, that will have to be in the letter from your doctor. I had that problem at work, I was an operator but couldn't remember how to schedule or transfer calls or the numbers myself. I think this is what helped me get disability.

I am having the tiredness, fatigue, achiness and sore shoulders that i had last year that had faded away during the summer. There's nothing i can do but the best i can do and I take rest periods instead of rest days. I have been doing a bit and then lying down.

The fog lifts and I haven't had it so bad. I can retain when i read a book now and i remember some phone numbers.

You are going handle this all with grace and courage, I can tell. Your letter is articulate and conveys how much you are trying and your frustration.

One other thing, my daughter has chronic fatigue syndrome. She had a test called a tilt table. It is one of the only tests to identify cfs. She had to lay down at highschool, she couldn't make it up the steps, she would fall off the risers in choir. She could bare walk home some days. She got on a medicine called Florinef; it helps her blood to circulate and has helped her tremendously. When she went away to college, we made sure she had a single room-got the doctors note-so that she could rest or sleep after classes and work around her sleep schedule.

Try to stay positive, even though its hard. Try not to focus on what you can't do, but on what you can. I tell myself "Its ok honey, go lay down for a bit." or I try one thing on my list and then rest. I have contests with myself. See how fast I can take a shower, when i haven't even the energy to do it. I always feel better aftwards. And staying caught up with dishes, ugh, it seemed like so much work but i knew if i left them, it would be even more overwhelming, so i play beat the clock and see how fast i can get them done. Last night I had them washed and dried in 8 minutes and then i had enough energy to fold a load of laundry. Setting little goals and reaching them makes me feel better than if i laid around all day. I can feel my symptoms are flaring and hope they pass again, but if they don't, I know how to live my life around them.

I hope i helped you. I hope that you will read the sticky notes at the top of this board, there is so much information there.

You are in my prayers,

Old 08-30-2005, 08:50 PM   #3
Join Date: Aug 2005
Posts: 99
kelley_bsb HB User
Re: A little help please?

Thank you so much for everything. I'm starting to finally reach the point where I'm reaching out for help from the people around me. I told my mom that I think this is what I have and she's going to send me to a doctor that doesn't strictly deal with children since it's mostly seen in younger women and not kids. I'm going to see my counselor soon to see what my options are as far as school goes, I may end up dropping a very hard class that's at the end of the day so I can leave after lunch if I have to.
What you have said about your daughter going to college has given me a lot of hope because I have been really worried about just that lately (since I am a senior and all)
I will try to remember Florinef if/when I am diagnosed because my circulation is horrible, my feet and hands turn purple all the time and hurt/burn (things my current doctors don't seem to find a conscern)
I am very thankful to have your support, I'm sure I will continue taking advantage of this...what's the word?? ugh.. blog thingy? forum! that's it..

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