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Topic: Fibromyalgia

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Subject: Fibromyalgia
Date Posted: 11/1/2008 4:02 PM ET
Member Since: 10/1/2007
Posts: 2,380
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Did a quick look and didn't see this subject listed and looking for some quick answers!!  Having my worst flare-up in EIGHT YEARS! and cannot remember what to take.  Was doing fine until last week we had high winds (55mph +) and taking my dogs out for those two days must have really zapped me.  Horrible leg pains first night, couldn't even hold still.  Since then pain from toenails to hair roots it feels like.  At times I can barely walk or straighten up.  Hurts to wear shoes.  Hands and arms hurt.  No body part is unaffected at this time.  Can't lay down because of the back pain.

I have melantonin, selenium, Bayer aspirin, and DH just went to store for pain relievers. 

Any suggestions?  Thanks for anything!

Date Posted: 11/3/2008 9:20 AM ET
Member Since: 9/30/2006
Posts: 6,885
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Emilie~

Hopefully by this point you are feeling better.  I would suggest your aspirin or ibuprofen would be helpful, but of course don't take them together.  Have you talked with your doctor about Lyrica?  This is a new drug that has just been approved over the last few months to actually treat fibromyalgia.  I don't have this diagnosis, but I do have a cousin with it.  She is now on Lyrica and she is seeing great improvements!  If you can manage it, doing some exercising might help as well. 

Hope you feel better soon!!!

 

Date Posted: 11/9/2008 1:21 PM ET
Member Since: 6/1/2006
Posts: 5,068
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Emilie,

I have fibro. Diagnosed 6.5 years ago.

I usually just take ibuprofen when I havea flare up but do have pain medication for the really bad ones. The weather really plays a big part in my pain level. Cold, rain and humidity are my enemies. Not good for me when I live in the part of the country that has a 5 month long winter.

My doctor did talk to me about Lyrica but he feels that with the side effects it's not worth it at this time for me to try it. I've tried everything under the sun so far and paying for a Rx is not worth it. Hopefully new meds will be available soon.

I know how it is to have your entire body hurt. It's really hard to live this way.

 

Date Posted: 11/9/2008 7:55 PM ET
Member Since: 7/11/2008
Posts: 1,241
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Hi Emilie,

As you know, I also have it, diagnosed 10 years ago.  When I have flare ups, I use a moist heating pad and alternate with an ice pack.  My Rheumatologist says that the best over the counter pain medication for fibromyalgia is Naproxen Sodium/Aleve.  Ibuprophen, Tylenol, etc do not work!  He recommends taking more than 2 pills.  He also has me on Lyrica which helped a lot.  I recently went off of it because I am trying to get pregnant and I noticed how much more pain I am in now.  He also recommends exercise, this is a must!  If you hurt too much, start out slow and build yourself up.  I use an exercise DVD and it is awesome!!   I noticed a huge difference in pain when I don't workout.  Another product that I use is Aspercreme.  My husband saw a commercial advertising an ointment for fibromyalgia pain.  He did some research on the computer and found that Aspercreme had the exact same ingredients. 

Here are a couple of links I wanted to share :)

The Exercise DVD I use is:  www.lesliesansone.com/store/product122.html

The website for my doctor, my.clevelandclinic.org/staff_directory/1/Staff_615.aspx  This website may not help, I just wanted to share with you a little about my specialist.  He has done absolute wonders for me!!

Hope you start feeling better soon!  I would be more than happy to give you my email so we can keep in touch.  It is nice talking with others that are going through the same thing as you, since others just don't seem to understand :) PM me if you want my email.



Last Edited on: 11/9/08 7:57 PM ET - Total times edited: 1
Date Posted: 11/12/2008 5:10 PM ET
Member Since: 6/1/2006
Posts: 5,068
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I was taking Aleve for awhile, and it worked great, but you should not take it if you have a family history of heart problems and strokes. My mother had a heart attack and my father has had strokes, so my doctor strongly advised me against taking Aleve. It worked wonders for me.

 

Date Posted: 11/25/2008 7:55 PM ET
Member Since: 7/11/2008
Posts: 1,241
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bump...everyone have a wonderful Thanksgiving!!

Date Posted: 11/25/2008 8:49 PM ET
Member Since: 10/1/2007
Posts: 2,380
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Just getting back to this!  It's been a long couple of weeks.  Finally broke down and saw my doctor.  He put me on 60mg of Cymbalta and Aleve 220mg two in the morning and two at night.  Seems to be letting a bit, not much.  I just try to stay as busy as I can and get done what needs done.  It started out prob a 10/10 but is down to about 8/10 so I suppose that's progress!

Well, I hope everyone has a Happy Thanksgiving.  We are doing our tomorrow as DH has to leave Thurs morning for a run to Nebraska and won't be back till Sat and then leaves Sun for WI.  Oh, well it's a job!  Take care all!

Subject: Cymbalta
Date Posted: 11/28/2008 5:45 PM ET
Member Since: 9/21/2008
Posts: 1
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Cycle304...be careful with Cymbalta.  Moniter your blood pressure.  I have fibro (30 years) and also reactive arthritis (3 years).  I tried Cymbalta. Oh it helped so much with the depression from having these illnesses BUT it really raised my BP.  I had never had BP problems  before.  I went off of it immediatly.  You might want to try Effexor.  It did help me with the Fibro.  I went off of it because of expense and wanted to see if I still needed it.  I did ok on St. John's Wort and am still on that but then I got hit with the arthritis which is even worse then the Fibro!!  Anyways...I'm still trying things  to help with that....just saw your post and wanted to mention the Cymbalta thing to you.  Good luck with everything.  I can relate.

Date Posted: 11/28/2008 6:15 PM ET
Member Since: 10/1/2007
Posts: 2,380
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Thanks, Lynn.  I have had high blood pressure for quite awhile but so far it is okay.  I have to go back to the dr Monday, so we'll see what he says.  Just makes you want to curl up and hide!!  *sigh*    Take care, Emilie

Date Posted: 12/8/2008 9:58 PM ET
Member Since: 7/11/2008
Posts: 1,241
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Cynmbalta did wonders for me and I have no worries about high blood pressure.  You see, along with Fibro I have CFS and an Autonomic Dysfunction that causes me to have really low blood pressure.  I am on 2 medications for this until recent.  I went off about 10 medications the this summer so I can try to get pregnant (I'll be 35 this month, not getting younger and want kids).  The doctors are really monitoring me through this, but so far I am doing good except I got walking pneumonia and had to have my gall bladder removed about 3 weeks ago.  

That is good to know about the high blood pressure with Cymbalta, my Mom also takes it, I will let her know this side affect.

Keep this thread going, so much good info :) 

Date Posted: 12/9/2008 12:38 AM ET
Member Since: 10/1/2007
Posts: 2,380
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Thanks for everyone's advice and input!  I went back to my dr today and he is continuing the Cymbalta 60mg qd, but he did want me to replace the Aleve with Tylenol due to some chest pains that are becoming more frequent and put me on Nexium.  It doesn't sound cardiac so he's thinking acid reflux. 

I have had this since 1997 and can honestly say that I can deal with the pain in the hands, wrist, arms, legs, and so on.  HOWEVER, it's the pains in my buttocks that drive me nuts.  Honestly, how can you get comfortable?  You can't!  Sitting in the ofc today squirming like a kid that had to pee and he's just reading notes, and checking side effects.  I'm thinking "would you like to hurry that up!"  Jeez!  Well, if you can't change it ya just gotta laugh!

Take care all!

Date Posted: 12/11/2008 7:42 PM ET
Member Since: 4/26/2008
Posts: 1,669
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Last Edited on: 1/21/09 11:02 PM ET - Total times edited: 1
Subject: Fibro Treatment
Date Posted: 1/25/2009 2:47 PM ET
Member Since: 7/31/2005
Posts: 21
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I have a friend that has had fibromyalgia for years.  She is doing a protocol she learned about at www.fibromyalgiatreatment.com.  She has a book and has even flown out to California to see the doctor.  She has reversed hers and swears by this protocol.  You may want to check it out.

Date Posted: 3/8/2009 1:31 PM ET
Member Since: 6/11/2007
Posts: 20
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Acupuncture!!

 

I'm 20 and have had fibro for 6 years, I tried everything to help it including Lyrica (coudn't function on it) and nothing worked. Finally I went to acupuncture and it's helped sooo much!

Date Posted: 3/20/2009 10:48 PM ET
Member Since: 1/10/2009
Posts: 1,709
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Terrible disease!  Until 1 Oct 08, I couldn 't let it get me down because I worked for the gov and was the boss.  Now that I am retired, partly due to pains, it's different.

I take Ropinirole 3mg for restless legs.  Finally some relief!  My middle finger on the left hand started hurting so badly last year that it hurt when I didn't move it.  Nabumetone  750mg has helped.  I have not found any over the counter that helps.  The hot wax heated in the HoMetics heating pot is wonderful for the hands.  I got my pot at a thrift shop but Bed, Bath and Beyond has them, I think.  Sleeping in a recliner or with 3 pillows helps me.

You need good shoes with some Dr Scholl's, tri-comfort (UPC 11017 37080)in them for prevention of heel spurs. 

I have to say, all in all, arthritis exercises are the best things.

Good luck.

Readings makes me smile.

Date Posted: 3/29/2009 7:20 PM ET
Member Since: 2/12/2007
Posts: 831
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I've had fibromyalgia for as long as I can remember.  I had symptoms as a child, but it got so bad when I was 34 that I couldn't walk more than a few steps without stopping to rest.  I'm doing better than that now, thanks mostly to a doctor I found that does prolotherapy and local (never central!) nerve blocks.  Lyrica only made me worse, and I take a coctail of prescription drugs, but I wanted to make a few suggestions of the things that I have learned that might help others, hopefully not as sick as I am.

Licoderm patches--5% licocaine in a 4"x6" patch, developed for shingles, but can be very effective when pain is localized.  (Like when you can't sit, Emilie.)  Insurance doesn't like to pay for it, but a persistent doctor can usually make it happen.  12 hours on, 12 hours off.  Effect usually lingers about that long. 

Topicals--lidocaine in PLO gel or other gel (PLO seems to be the most effective, but also the most messy), gabapentin in gel, on top of lidocaine gel--pharmacist says that they can't be mixed in the same gel because it's just too much medicine.  You can altertnate with the lidoderm if you don't have so many areas that you exceed the dosage. 

Tape--yes, just ordinary tape.  Tape along nerves that hurt.  You might need an anatomy book.  I have a muscle that has been cramped for two years.  After I taped it for a few hours, it relaxed.  It was amazing.  I've been using Lidoderm patches by the case, and this may be better at reducing the pain.  If you want to, you can just guess; tape where it hurts.  The type of tape doesn't matter, but paper medical tape is good, I sometimes use sports tape, and he gave me some tape that is very sticky, can stay on for days and isn't supposed to irritate the skin.  If you want to know what it is, I will go look it up for you.  I warn you, though, he says it is expensive.  Even the paper tape can stay on for days in some locations. 

I'll try to add more later.