How many members have fibromyalgia?
08-02-2010, 10:10 PM
#292
Member
Join Date: Feb 2010
Location: Alberta
Posts: 90
Hi all, I too have fibromyalgia, and I have found that just before a flare-up I will have trouble saying some words. It is in my head but I can't say the word, I know then that a flare-up is coming. I have had fibromyalgia many years but was diagnosed with it in 1994 about 3 years after a back injury and was in physio daily for 9 months to get me walking upright. I thot I was losing my mind. I couldn't concentrate on anything and after therapy I would spend the rest of the day in bed. I have had several remissions and now the pain is not as bad as it used to be. at least not all the time. I find I have to pace myself or I am useless!! I also have congestive heart failure, have had 2 heart attacks lots of damage, degenerative disc disease. Definately stress plays a big part. I have a wonderful support group in my women friends. We swim at least twice a week and meet for coffee etc. after. It is the best therapy. Lots of laughter,love and compassion. plus the excercise. good luck to all with this crappy (oh yes, also IBS seems to go hand in hand with fibro)which makes for more interesting stories at the coffee table. Keep up your spirits!!!
08-05-2010, 01:00 PM
#293
Senior Member
Join Date: Mar 2009
Location: Spokane, Washington
Posts: 365
Ahhh good ole Fibro....I have had it for over two years...probably longer just didn't know it. Took a great doctor to figure it out. I am on several meds but the one that helps me the most is LDN. I am on 3mg. And it helps. I still have pain, but not like before. And I still hurt big time form the low back pain and tail bone pain. I also belong to a great site called
patientslikeme.com Log on and get help and support.
Nora
patientslikeme.com Log on and get help and support.
Nora
08-05-2010, 01:08 PM
#294
Super Member
Join Date: Jul 2010
Location: Noblesville, IN
Posts: 1,294
I bellong to an online forum called FibroTalk. It is very professional, and there are all types of help on there. There is everything from articles to recent research. There are also things about having to go on disability if you are facing that, or issues with legalities.
08-05-2010, 01:34 PM
#295
Super Member
Thread Starter
Join Date: Jan 2007
Location: Crystal River Florida
Posts: 9,785
Originally Posted by quilting memaw
Ahhh good ole Fibro....I have had it for over two years...probably longer just didn't know it. Took a great doctor to figure it out. I am on several meds but the one that helps me the most is LDN. I am on 3mg. And it helps. I still have pain, but not like before. And I still hurt big time form the low back pain and tail bone pain. I also belong to a great site called
patientslikeme.com Log on and get help and support.
Nora
patientslikeme.com Log on and get help and support.
Nora
08-05-2010, 01:40 PM
#296
Super Member
Thread Starter
Join Date: Jan 2007
Location: Crystal River Florida
Posts: 9,785
Originally Posted by mlaceruby
I was diagnosed with Ankylosing Spondylitis right after my first son was born 23 years ago.
Have dealt with the daily severe pain because the arthritis meds didn't help and gave me an ulcer!
went to the Dr 2 years ago for severe pain in my shoulder and arm thought I had a pinched nerve or tendenitis. He gave me cortizone shots which helped but sent my to the rheumotologist as he thought I had Fibro.
well sure enough that was her diagnosis she said I could be the poster child!
she started me on effexor and muscle relaxants along with exercise.
Some of the drug companies have a program for those who really need a medication and can't afford it! I would have a hard time wiyhout the effexor. It has made a big diffefence in the quality of my life!
Check out this web site to see if you qualify!
http://www.lilly.com/responsibility/...ents/programs/
worked wonders felt like a new woman! until we lost our insurance! can't afford the meds they run over $500/month!
Have dealt with the daily severe pain because the arthritis meds didn't help and gave me an ulcer!
went to the Dr 2 years ago for severe pain in my shoulder and arm thought I had a pinched nerve or tendenitis. He gave me cortizone shots which helped but sent my to the rheumotologist as he thought I had Fibro.
well sure enough that was her diagnosis she said I could be the poster child!
she started me on effexor and muscle relaxants along with exercise.
Some of the drug companies have a program for those who really need a medication and can't afford it! I would have a hard time wiyhout the effexor. It has made a big diffefence in the quality of my life!
Check out this web site to see if you qualify!
http://www.lilly.com/responsibility/...ents/programs/
worked wonders felt like a new woman! until we lost our insurance! can't afford the meds they run over $500/month!
09-01-2010, 02:43 AM
#297
Super Member
Join Date: Jan 2008
Location: Barnesville GA
Posts: 3,181
I wanted to put a link up from my newsletter this morning but it wouldn't work.
So I copied the article at least the UK is taking this disease seriously. In case you don't know ME is the name that pretty much everyone except the US has taken for fibromyalgia.
The ME Association (www.meassociation.org.uk) posted the following on Friday, Aug 27
The Department of Health has decided to ban blood donation permanently from all prospective donors in the UK who report they have had ME/CFS from 1 November this year. The decision was announced in an email sent to The ME Association today by the Department's Director of Health Protection.
In a brief email, Clara Swinson writes:
"As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.
"The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC)."
The announcement has already been welcomed by contributors to ME/CFS internet forums around the world as further indication that the physical nature of the illness is being taken ever more seriously. Clara Swinson's email does not reveal the extent to which studies into the XRMV virus figured in Department of Health's thinking.
Below, we publish the correspondence with the ME Association which led to today's announcement.
(To read more go to www.meassociation.org.uk news )
So I copied the article at least the UK is taking this disease seriously. In case you don't know ME is the name that pretty much everyone except the US has taken for fibromyalgia.
The ME Association (www.meassociation.org.uk) posted the following on Friday, Aug 27
The Department of Health has decided to ban blood donation permanently from all prospective donors in the UK who report they have had ME/CFS from 1 November this year. The decision was announced in an email sent to The ME Association today by the Department's Director of Health Protection.
In a brief email, Clara Swinson writes:
"As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.
"The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC)."
The announcement has already been welcomed by contributors to ME/CFS internet forums around the world as further indication that the physical nature of the illness is being taken ever more seriously. Clara Swinson's email does not reveal the extent to which studies into the XRMV virus figured in Department of Health's thinking.
Below, we publish the correspondence with the ME Association which led to today's announcement.
(To read more go to www.meassociation.org.uk news )
11-12-2010, 10:08 AM
#300
Super Member
Join Date: Oct 2010
Location: Minnesota
Posts: 1,284
I am amazed at how many of us have this. I have FM, CF, and PCOS. I've had it for about 35 years. Pain and fatigue a never ending battle. I'd kill for a good nights sleep..well maybe not kill...! Stress and weather...my big triggers! Can't make it through a day without em LOL! If we only looked as bad as we felt!!!! Sometimes I think it would actually help to look a little sick! I'm having a flare and I'm just so crabby this time! So much to do in so little time and no energy at all...the aching I can deal with (most of the time) it's the energy or lack of it that just kills me. I've tried meds. but lucky me, I usually get the side affects that say "stop taking and call your physician immediately!" With this flare I found I could NOT walk down steps! Did have to go the steriod route and can now hobble my way down! This just so sucks!
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