New to Fibro and the Forum

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

EmberKitty
Regular Member


Date Joined Mar 2009
Total Posts : 65
   Posted 3/27/2009 2:18 PM (GMT -7)   
Hello!  I am 30 years old, and I was diagnosed with Fibromyalgia last week after 5 long years of searching for answers.  I have been doing a lot of research this past week trying to find out as much as I can about the condition and my options for treatment.  I have an appointment on Tuesday with my doctor to come up with a cohesive treatment plan.  Right now I am just doing the best I can with the various prescriptions I have been given in the course of finding out what's wrong.
 
I also have PTSD and Bi-Polar with a high sensitivity to anti-depressants...which knocks them out of the running for treating my fibromyalgia.  I have a great support network of family, friends, and even my boss which I am extremely grateful for. 
 
I'm what some would call an organizer/planner/list queen.  Because I have so many problems remembering things and staying focused I create charts, graphs, plans, and lists for nearly every aspect of my life.  I have carried this through with my new diagnosis as well.  In the past week I have created a power point presentation about the condition to share with family and close friends.  I also provided them with my own scale on how I rate my days so that I can easily communicate to them how I am doing on a day to day basis.  And in preparation for my doctor's visit I have an outline of what I think my treatment plan should consist of as well as a chart that helps me track which of my symproms each treatment would address to make sure everything is covered and nothing is being over treated.
 
I guess you could say I try so hard to overcompensate for my spaciness that it seems almost neurotic LOL.
 
I am most interested in as many non-medicating treatments as possible including alterantive therapies like acupuncture and electrical stimulation.  I am hoping to hear from others that have tried alternative treatments and what their experiences were.
 
Also, the post that made me want to join here was the "You might be a fibromite if..." I swear I am guilty of about 90% of those LOL!

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 3/27/2009 2:58 PM (GMT -7)   
Hi, EmberKitty, and welcome!  I'm glad you decided to join in.  This is a great group.  You will find that out soon enough!
 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good information all about fibromyalgia.  You can learn a lot from that thread.
 
Alternative things...I use malic acid/magnesium supplements that have helped me with my pain and fatigue.  I also use ibuprofen with food and Tylenol.  This is all I take for fibro.  There is a link in the Fibro 101 thread all about the malic acid/magnesium supplements and how they work in your body.  They don't work for everyone but they have helped many.  It's an option and they're not expensive either.
 
Many with fibro have a vitamin D deficiency so maybe ask your doctor to check your levels.  If you are low on vitamin D, it can cause pain and fatigue.  There is a thread about vitamin D deficiency that I wrote earlier this week so it should be on the first or second page of the forum.
 
Read back posts and ask questions.  We are here to help you.  Again, welcome!  I hope to hear more from  you soon.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


EmberKitty
Regular Member


Date Joined Mar 2009
Total Posts : 65
   Posted 3/27/2009 3:27 PM (GMT -7)   
Sherrine,

Thanks for the reply. I will ask the doc about the malic acid/magnesium supplements and see what he thinks. Unfortunately ibuprofen and tylenol don't do a thing for my pain :( When it gets bad enough for medication I have to take somehting pretty strong in order to get any relief. My doc did check my vitamin levels as part of his diagnostic process and I am not missing any which is good news for me. I do take a multi vitamin daily and eat a fairly healthy mostly vegetarian diet.

Danibm,
Thank you for the reply and the list of what has and hasn't worked for you. I have used accupuncture to help with pain before with some success, my problem has been sticking with it. I'm hoping my doc can get me a referral so insurance can pick up some of the tab. I'm not so sure I'd be willing to go for the injections though, they kind scare me. I've looked into biofeedback a bit, but so far am not convinced. I am supposed to go in for a sleep study sometime in the near future to find out if I have sleep apnea. I don't think I do, I just think the pain keeps me from sleeping well.

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 3/27/2009 4:24 PM (GMT -7)   
Hi Emberkitty and welcome to our family!!

Glad you have decided to join us. I think you'll enjoy the friendship and information we all have to share plus we truly do understand what you are going through. I hope your doc appointment goes well. Keep us posted!

Don't miss our daily Koffee Klatch were fun is our prime topic!

Chutzie
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
(\__/)
(='.'=)
(")_(")

Post Edited (Chutz) : 3/27/2009 5:28:44 PM (GMT-6)


EmberKitty
Regular Member


Date Joined Mar 2009
Total Posts : 65
   Posted 3/27/2009 4:34 PM (GMT -7)   
Thank you for the warm welcome Chutzie! I'll check out the Koffee Klatch in a minute. It is such a relief just to know I am not alone and I am not crazy after all..I have been really doubting my sanity over all this until now.

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 3/28/2009 9:30 AM (GMT -7)   
What kind of chart did you make Ember to relate how you feel to your family??? You are organized!!!
 
Okay, I stay away from as many meds as I can. I do have vicoden but haven't taken any of it. Kinda have a med phobia. I do use a TENS unit and it helps me. That shows you how things work for some and not others. I use lots of heat in any form, even dry heat seems to help. I have a great shower massager that I love, it feels so good on my shoulders and back. I use a moist heating pad, I like that better than the bed buddies or rice bags.
 
It really is all trial and error when it comes to finding what works for you but you, with your docs help, you will find it.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


EmberKitty
Regular Member


Date Joined Mar 2009
Total Posts : 65
   Posted 3/28/2009 10:02 AM (GMT -7)   
Marlee,

Thanks for the reply. I have found that heat helps me some too, my mom has a hot tub that I am free to use whenever I want and just 15 minutes in there gives me a ton of relief, it just doesn't last for more than a few hours.

As for the chart I used colors and numbers to creat a scale of 1-5 with 1 being a good day. I then wrote a little paragraph next to each number to describe how I might be feeling on that kind of day and what kind of activities I may be up to doing. I also made a smaller version without the paragraph that I put on business card stock and handed out to those closest to me. Now every morning I send a text to all my close family and friends letting them know what the day is looking like for me. It's something they asked me to do when I told them about the diagnosis and finally stopped trying to hide my pain and do everything regardless of how much I hurt. Here's what my descriptions were:

Blue 1 – Today is a good day! While I still have some pain I am for the most part feeling very good and don’t need medication to help me control it. Today would be a great day to get out of the house and do something that requires walking or a lot of movement. Let’s enjoy today!

Green 2 – Today is a pretty decent day. My pain level is fairly moderate and I feel I can control it with over the counter meds. Let’s plan to do something fun today that will allow me to rest on occasion like a museum.

Yellow 3 – Today is an ok day. I hurt more than can be easily controlled or ignored. Over the counter meds help some and prescription meds are too strong for today. I am probably pretty tired and would like to do some quiet activities. I may be up for getting out for a little while to go to a store or two. Mostly today would be a good day for activities that I can do while sitting like crafts. My brain may be a bit foggy please be patient with me.

Orange 4 – Today is not so good. I hurt quite a bit and I am not much in the mood for anything. Today is a day where every movement causes pain and I can’t control it without prescription meds. I am exhausted and I can’t get comfortable enough to sleep. I will probably decline invites to go out unless I have to. Today would be a good day to stay home and watch movies or maybe play some board games. I am having a hard time focusing and remembering things today.

Red 5 – Today is a bad day. I am in a lot of pain and most likely hyper sensitive to sounds, light, touch, and smells. Some movements are excruciating while others are just plain painful. Even prescription medications give little to no relief. I am most likely very sensitive emotionally today and need a little extra love. My patience is thin and I will get frustrated easily. I am very forgetful and can’t focus on tasks easily. Please hang in there with me and help me remember the pain will pass.
New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 03, 2016 2:57 PM (GMT -7)
There are a total of 2,732,234 posts in 301,003 threads.
View Active Threads


Who's Online
This forum has 151167 registered members. Please welcome our newest member, Hope2day.
305 Guest(s), 15 Registered Member(s) are currently online.  Details
braddiefj, Lymepilot, Albannach, Scaredy Cat, White Bird, Redwing57, Alice22, Awake_, Dave123, snowboat, Ggrlsav, Malone26, trumpet123, JesperTrottier, minnietoty


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer