NINA/IN 2/24/06
Sorry everyone I just noticed that I am a day behind everyone! thats probably because I can't sleep at night so I stay up and then try to catch naps here and there, just wanted to let everyone know that my previous message is from today! So hopefully i will here from someone soon! thanks.

Have your husband look into a "SofTub". I bought one about 6 months ago. It is vinyl and is very comfortable to sit in. When empty you can stand it on its "side" and roll it to move it!!! And it will roll thru any standard door frame so no cranes lifting it over fences. It also runs on a standard electrical outlet!! And it should only cost about $100.00 to run it for an entire year/24/7! We love it! They have a Website so check it out! HI all! Bye!!

I am so upset and hurt so much. I can't stand this pain anymore. I don't know what to do. They all treated me like I was a drugie, and I know I'm not. I try to take as little medication as possible.

We got our new loveseat, it's a lazyboy,and so comfortable. It even has in the middle two drawers and a table and arm rests. I absolutely love it. I am just so tearful and weepy lately, been sleeping a lot since getting home too. Didn't get much rest at all in the hospital.

Please give me some advice to deal with this horrible pain so I don't end up back in the hospital. I've missed you all so much. Welcome to all the newbies. Hugs, Jaime

Welcome to all the newbies and a big warm hello to everyone. Sending warm days with sun filled skies and gentle fuzzy hugs to all.

Patti--your symptoms sound very similar
to mine. I also develop a all over tremor that looks much like
Parkinson's. I have had full neuro exam twice, 3 years apart(mri
and emg). I finally was referred to a wonderful rheumatologist
with many fibro patients and he is sure it is fibro causing all
this weird stuff. On a good note the one med that helps me the
most is Baclofen. It is a muscle relaxer but it works at the
sight of the spinal cord. Nobody understands why since there
are no problems that are evident with my cord.

Sherri-- the cold sucks, but I just wear insulated long
underwear and lots of layers. Nashville probably is not as
cold as here(iowa) but I bet Ontario is. I usually have 3-4
shirts on so maybe I would wear 7-8 in Canada lol. I will tell
you this though, The bright green colors of spring and summer will
be very impressive after living out west. They make it all worth
while for me to put up with the cold.

Everyone--I finally got my work schedule rearranged so I only work
10-6 at night but I have to work at two different homes(i am a
nurse-lpn) I also started taking 100mg of trazadone instead of
50mg when I go to bed. I have been sleeping great. I think its
the trazadone. It helps calm your mind to sleep, helps with the
restless legs and is an antidepressant(i also take paxil--tried
cymbalta but even after 5 weeks was still crying all the time for
no reason).

Jamie--you need to insist on a referral to a pain clinicand I am
sorry the treated you like a drug adict. I have had doctors tell
me for the last several years that I was crazy and everytime they
would send me to a new psychiatrist he would say no-your not crazy
these are not symptoms of a mental disorder. The one family dr
who sent me there thru my chart at me and yelled "what the hell do
you want from me-There is nothing wrong with you" needless to say
I immediatly left that office. Keep your chin up!! a;so if you
are not on an antianxiety ask to try that but you will need one
that is long acting so you can have a steady level throught the
day. best suggestion Buspar. However you will still need to try
exercises with breathing, imagery or some type of self hypnosis.
The drug will just allow your mind to settle down enough to
concentrate.

I am sorry this post is long but just wanted to contribute,
thank you!! Bethany

JAIME, I’m so sorry your tests and hospital stay weren’t more helpful. I agree with BETHANY that if you’re supposed to just “get used to” the pain, you need referral to a pain management clinic and some help coping – a psychiatric referral. ANYBODY in that much pain needs to talk to someone, and the anxiety medicine is a good idea too. You know me: I don’t take pills! So I’m SERIOUS when I say that. I hate to say it but you might not be getting the attention or respect you deserve because it is your husband’s workplace. Didn’t he tell you they were complaining to him? You’ve lost them. You need to get your rheumy to send you for better help.

JODIE and SHERRI, I took Mirapex for about four months. My rheumy tried me on Neurontin, which I felt made me very anxious, and then Mirapex, which I felt did the same thing. I’m now on Cymbalta, which gives me a lot of energy and only mild restlessness, as in I’m often tapping a pencil or jiggling my foot, something I’ve never done before. In exchange for the energy, I’ll take it! But I sure wish it was less expensive. BTW, I’m only taking 20 mg., so a higher dose could help quite a bit more, but everyone’s different; you have to find what works for you.

RICHARD, I was about 24 the first time I went to Disneyland and it was just magical! This coming Christmas we’re taking Darrell’s son to Disneyworld, and neither of them has been before. I can’t wait to show them all the fun! Have a GREAT time! Hint: Let the kids stand in lines while you sit on a bench within visual range. You’ll last longer that way.

NINA, the visit to FL is a good idea. Whether you stay with your boyfriend in the long run or not, someday you might want to consider moving to a more “Fibro-friendly” climate than Indiana. (I can say that; I’m originally from Michigan!) If you ever want to check out Virginia, you can come visit me. I know you’d miss your family, but you’d probably feel a LOT better. I do! I love your advice about having a “near dying experience.” I’m sure it gives you as good a perspective on Fibro as a person can have. As for the IBS, you might try getting a bottle of Prelief. It’s just calcium and magnesium, which will settle your stomach but also help regulate. I take it to keep the acid in foods and drinks from bothering my bladder, but it really helps the IBS too. It’s in the antacid section of the store, made by the Beano people, which also might help. And as for tips on sleeping, you don’t say what medications you’re on, but the biggest dose of antidepressant you can get will help the most with sleep. ALSO, I have a memory foam mattress topper that not only has helped me a LOT (with both pain and sleeping) but Darrell loves it so much he bought one for his parents and wants to get one for his daughter and one for his son! HUGS to all.

GOOD MORNING ALL. DORIS/SHERRI - THANKS SO MUCH FOR ALL YOUR RESPONSES AND INTERESTED COMMENTS. HERE IN VIRGINIA IT IS STARTING TO FEEL A BIT LIKE SPRING AND I CAN'T WAIT FOR THE WARMER WEATHER!! I WILL LET YOU KNOW HOW THE MIRAPEX WORKS. I WON'T KNOW FOR A BIT, BUT I AM PRAYING FOR THE BEST. I DON'T KNOW WHAT ELSE TO DO AT THIS POINT FOR THE RESTLESS LEGS, THEY DRIVE ME CRAZY. THEY GO PRETTY MUCH ALL THE TIME. I AM WITH A VERY GOOD NEURO AND RHEURY DR. SO, I SEE THEM ABOUT THREE TIMES A YEAR FOR CHECKUPS. AFTER 3 MRIS, 2 NERVE CONDUCTION STUDIES, ALL KINDS OF BLOOD WORK AND AN ENDOSCOPY, WE'RE AT FIBRO, THANK GOD, I GUESS. I TAKE ULTRAM FOR THE PAIN, NOW I ONLY HAVE TO WORK ON THE SLEEP, WHICH I'VE BEEN TAKING LUNESTA. I DON'T MEAN TO COMPLAIN, SO I'LL CLOSE FOR NOW. JUST VENTING. THANKS FOR THE OPPORTUNITY. I AM A TRUE BELIEVER, AND I WISH EVERYONE HERE A PEACEFUL, PAINFREE, HAPPY DAY!!!! OFF TO RUN ERRANDS. KEEP HANGING IN THERE.

My 9 yr old daughter today said as she was leaving for the bus..."do something today Mom". At first I didnt know what she meant. Then I realized that she knows I sit in this house, day after day, doing pretty much nothing. I have been crying all morning.

I have gained 35 pounds since my diagnosis and I feel terrible. I know two of the RX they have me on causes weight gain. But, I need them! They are Neurotin and Desryl. The Neurotin is for nerve damage from prior surgeries and the Desryl for depression. Any advice on alternatives to these?

I also take Xanax for anxiety. It is written for 3xdaily, but I usually take 1 or 2. To be honest with you, it doesnt relax me anyways. Nothing seems to relax me!

Sorry for the LONG post. I wish I had some sunshine and warmth.

I just wanted to mention that because it really made me more depressed! Dang it. I hope you all have a good day! I am looking forward to SPRING! Please Lord, give me some sunshine!

I go to both my rheumy and my family doc on wednesday. Depending on how that goes we have heard of a really good pain management doc in Christiana, which is an hour away. So we may end up going there. I don't want to do anything to hurt Jim's job.

Jim brought me a bouquet of beautiful flowers today. They have roses, carnations and a variaty of flowers. They are gorgeous. He is so sweet. Granted I may have to go through pain the rest of my life, as long as I have him with me and all that I have been blessed with, God will get me through the pain.

Hopefully the pain will calm down so that I can start searching for clients for my business, and advertise.

Sherri,I'm heading west to California again Wednesday night,so I hope to find some of that warmth. It made it up to 27 here today and snowing tonight

Jaime,I feel sooooooooo bad for you. I know you have studied hard to get your business started,and I hope the doctors can help your pain.

My doctors appointment went well...I do have a sinus infection and he gave me an antibotic to take. We discussed my pain all my medical problems and he gave me meds for them too. I sure do have a great doctor !!!! I treated myself to a trip to the beauty salon for a shampoo and cut after my appointment and it was so relaxing.

Well friends,gonna send good wishes and prayers out for all of you as well as gentle hugs,take care of YOU.

200 mg Deseryl - take about 30 min before bedtime - ps eat somthing with it and MAKE yourself go to bed at the first sign of drowsiness. If you wait to long it wont work!

20 mg Xanax - take about 1 hour before bedtime

Calcium w/magnesium - 1000mg Calcium and 1000 mg Magnesium (this is great for restless leg also)

These are my "DO NOT's"

No alcohol - it makes you drowsy at first but the keeps you awake. It also causes muscle aches and pains in the morning!

Make the room as dark and comforting as possible and Do Not take any naps in that room. Take any naps on a couch or chair.

And obviously....no caffeine after 2:00 pm. I reduced my caffeine to 1 cup coffee in the morning and it really did help after a couple days.

PS everyone...yesterday was a really crappy day, but I stopped crying and dusted myself off. Hoping you all have a mild Fibro day! I really hope you get some rest soon! I feel so very bad for you...I have been there and still suffer when I dont stick to my regimen. Good luck.....

Today I have to call to schedule my vison test appointment, & my next appoinment with my primary Dr. I have to go shopping for the week and run some errands. Then I have to come home unload and put away the groceries, only to go back out to drive Nicole's Daisey Troop on a field trip to the Grocery store. If I could only shop @ the same time, but I am looking after about five or six gils on this field trip. Where did the time go, oh well I have to say good bye for now. Take Care talk to you soon. Richard in Tucson....

does anyone have a remedy for numbness. I do think this is one of the more bothersome symptoms. I just started ultram (tramadol) does anyone have any input with this? It seems to help, but makes me sleepy. Is that normal? The restless leg is still there, so I am still considering mirapex. Will have to think that over for awhile. Some days are so hard to get through, thank god for his strength, and our loved ones. I've been goingn on 8 years with fibro and still searching for the right combo. I pray it comes soon.

doris: how are you doing with the restless legs? Good wishes to all! Jodie let's for anyone reading this tonight, let's all have a moment of thought, or prayer, or what ever you believe in, together at 7:30 for a cure or break©through in '06 for this horrible syndrome. I truly beleive in the power of group thought, prayer, etc. peace and health to all!