Dawn,
I am sorry to hear about your "double whammy", having both fibro and lupus must really be hard. I have a sister with lupus and I suspect my youngest daughter also has it. My older DD is disabled from fibro and now she has a lung disease that is compounding her problems.
You are so right about rest...we have to be careful not to overdo it or pay the consequences.
I have been doing better since I started taking cymbalta.I haven't had a full blown flare in a while. I have a certain amount of achiness every day, but haven't been in the "fog" for a while. The fog was the main reason I gave up my nursing careear. I was so afraid I would make an error that would hurt one of my patients.
I seem to do better in warm weather, so summertime is usually better. :-D

I don't have Fibromyalgia, but I just took part in a Clinical Trial- pain perception vs. exercise relating to Fibromyalgia; it was very interesting, and I hope the data collected speeds up some thing to help manage it, if not cure it for you all.

I have fibro and arthritis in many joints , along with going though meno as well. I try not to over due, have fibro fog badly at times. Scary to drive or go out when that is going on. I know exactly what you mean when you say on your bad days you feel like one big toothache. Take Care.

Yes my fog got so bad that I asked to be tested by a psychologist to see what my IQ was, and if it were normal. I just felt so stupid all of the time. The more frustrated I got with the fog, the worse it got. It also played into why I had to leave my job. They kept putting more and more pressure on me, and I was already struggling physically and mentally to keep up I do not wish bad on anyone, but I do wish that sometimes these people who push so much at us could experience a little bit of what we go through everyday before they make judgements. I graduated in the top 12 of my high school class, and at the very top percent of my college graduationg class. yet I was made ot feel very, very stupid. There were also some implications that I was being lazy and/or disorganized. I hope to never have that happen again.

You're lucky (if that's the right word) that you could stop working. I have Lupus and Sjogrens (and they are undecided about Fibro) with all the symptoms described here. But I'm not old enough to retire, they won't put me on disability. But I know exactly how they made you feel. I'm in the same boat.

About a year after I was diagnosed with CFS_fibro, I started taking mega doses of grape seed extract. After six weeks, one morning i actually woke up before the alarm went off. What a shock. Not a cure but worth a try. Also maintaining a positive attitude is my salvation. And yes I still have bad days.

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.
worked wonders felt like a new woman! until we lost our insurance! can't afford the meds they run over $500/month!

Hi all! Thanks Ditter for asking! I too have FMS, with the pain and fog being daily, just in various doses. I don't do well with temp. changes. About 70 degrees is great for me! I don't handle cold, as it feels like it "goes to the bone" and I stay cold for long periods. I have been tested for RA, and told I would never have it. Praise God!
But I thought I's share some things that have helped me to cope with FM. I avoid caffeine, and "fake" sugars. I limit my sugar too. I take a good multi-vitamin, probiotics, and omegas. Malic acid and magnesium are a must take!!! Glucosamine and chondroitin are good also. I eat yogurt, and try to keep "good flora" in my gut. Grape seed extract and CoQ10 may be good also. You will have to try for yourself, but give the various vitamins, etc. some time for you to see a difference. Don't make a quick decision that they don't work.
Guard your sleep!! I need to take 2 prescriptions to help me with sleep, but it is working for now. I also take hydrocodone for the pain, and soma for a muscle relaxer. These work for me. I will not use the Lyrica or Cymbalta as the side effects are just what I am trying to get rid of!! I have a hot tub, and love it! Swimming too. For muscle aches, you could use a rice pack of some kind to help with shoulder/neck aches, etc. I try not to over-do, so I won't hurt as bad. Chemical sensitivities can be an issue too.
All in all, I try my best to keep a positive attitude. I can always think of something to be thankful for! I also sponsor a child through Compassion Int'l, as well as correspond with 2 other kids. I love it! It helps me to keep it simple, and also be creative. (since we can only send them paper items)
Quilting is my therapy. I love giving to others, especially hand-made items. I am learning to also do a few more projects for ME.
I am blessed to be married to a wonderful man, even though he doesn't truly understand the FM-but working on that!
May God bless each one of you! You are in my prayers~

I am on total Social Security Disabiliy due to fibro. It took me two years and an attorney, but I finally won. Of courst it isn't the same as a paycheck, but it is better than nothing...

I am not old enough to retire either - 44 years old. that is one of the reasons it is hard for me to admit that I can't do it anymore. If you are doing everything you can to keep up, and you just can't, maybe talk to your doctor about other options.

I was 46 when I stopped working. 48 when I got my first SS check. I had worked 28 years in a factory.

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!!!

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

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.

Nora....what is LDN?

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 )

Water therapy has been my salvation. It has helped to strengthen parts of my body that I never used because of some form of pain. I was diagnosed in 94. Also do take lyrica.

That's really interesting...I have wondered why my Dr. said no to donating blood.

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!

I've been seeing my dr for several years complaining about aches and pains. She finally sent me for blood work and xrays. Didn't find anything so pulled out her "book" and pushed on the 18 tender points for fibro...anything over 11 that hurts is a good indication for fibro. I had 13 so she started me on Cymbalta. I guess that even though it's for depression they are finding that it helps fibro patients. I had been on Darvacet but have since gotten off it and only take Ibuprophen on days when I'm on my feet alot (usually the weekends). My pain is mostly in my back, hips and sometimes knees although I go through spells where some part of me will ache for several months then it just disappears...it's really weird! I told her I felt like 1 big raw nerve before taking these meds. The biggest drawbacks to the Cymbalta for me have been a bad taste in my mouth and I'm more tired...chewing gum and 1 diet Coke a day seem to be solving these 2 problems for me pretty well.

Diannia

I have been "formally" diagnosed with fibromyalgia for a few months now even though I've been in pain for several years. I have all 18 trigger points.

Do any of you have extremely high B6 levels? The normal high is 12.7 and mine was 95! No one really seems to know why or what to do to lower it. I know B6 can affect the nervous system. I will have another blood test the end of the month and hopefully it will be lower Any input would be appreciated!!!

What does NAET stand for?

Thank you Ditter for asking. I can't believe how many of us are afflicted with this painful condition. It's been interesting to read all your thoughts and suggestions about this topic. I was formally diagnosed about 8 years ago but like many of you have probably had it for a lot longer than that. I had chronic fatigue syndrome in the early 1980's and my doctor feels it is linked to that as it's one of those lingering viruses (similar to glandular fever) that stay in your body and flare up when you get stressed etc. That probably explains why I have my good days and my not so good days. I am retiring from work this week so it's going to be interesting to see if my fibromyalgia improves once I leave my stressful job. I don't take any painkillers as nothing seems to work but I try to keep busy and try not to dwell on the pain. Quilting is very therapeutic. Best wishes to all.

The two CFS and Fibromyalgia seem to go together. . They (whoever they are) have decided CFS is a immune disease. In Britian from what I understand from reading about CFS they ask that people with it to NOT give blood. I really don't know sometimes which is worse. The fatigue or the pain from the fibro. Stress makes both worse. If I try to do anything like yard work it takes me a week to recover. I really don't know how people work with it. I can't make any plans because I don't know what days its(fatigue) going to hit so bad I can barely get out of bed. The pain I can mostly work around but not the fatigue.
I get a news letter about these two and every week it seems something else it popping up that works for someone else. I can't afford to keep changing trying to figure out if something works. Cymbalta was a horror for me. Actually cause audio hallucinations.And made me even more tired than I was already. All I did was sleep. They tried Neurotin which worked for a lot of people just made me feel awful. Caused chest pains and since I couldn't use that the doc didn't even try Lyrica since they are both gaba based. Good thing my DD's doc gave it to her for pain and it made her so loopy she couldn't function she had to stop and it didn't help the pain at all.
I am glad some can find relief with pills and such I just wish I could have my old life back. without the aneurysm surgeries without the fibro without the cfs the memory loss etc. I would settle for simple old age. LOL

If i even just hold the bottle of Lyrica, i gain 15 pounds! I only take it as needed so try not to take it frequently. I've not had a good week, but this is why I'm self-employed...longarmer. I work when I feel good, and rest when I don't feel good.

Funny you should mention blood donations. My fibro/CF started after I received blood (surgery related). I wonder????

I was told NOT to donate, by my Dr....he didn't say why, but I will try to remember to ask why.

The reason they say NOT to donate blood is they really don't know what causes Fibromyalgia.

I was d'xd with Fibro back in 1999. The drugs of choice then were antidepressants. I tried 5 of them & all gave me nothing but major side effects. I've tried the newer drugs & again major side effects. So I take vitamins, exercise & try to eat as healthy as I can. One bad days my Husband massages my muscle knots. If I push myself I know it will take me a few days to recover. Trips in the car exhaust me, again taking a few days to recover. So I try to plan those all day outings & keep the next few days open to recoup.

They say Fibro is possibly triggered from some underlying virus. Looking back I had a nasty flu type virus that attacked my muscles (mostly leg) 10 years before I was d'xd with Fibro. I had muscle spams from lower back to feet for 3 weeks, fever, nausea, etc. 2 rounds of antibiotics & a couple months to get back to feeling normal.

The hardest part of having Fibro is having everyone, including your doctors, tell you, you look healthy & normal. They tell you to suck it up. I even had people, including my cancer docs, say that to me while I was going thru chemo. I don't know what you're supposed to look like. If they had even one day of Fibro they'd change their tune in a heart beat!

It's the same song, sung by so many fibromites! You'd think the docs would take it more seriously than they do. It's an agonizing and debilitating condition that affects everyone in the family. My kids think I'm lazy for declining to go places, but I just can't. It takes days to recover. :( :cry:

I also suffer with this terrible fibromyalgia....Last yr was in wheel chair...This yr I can walk....never know when or where on my body a spell will start up nor how long it will last....

Wow so many of us have Fibro!

I have Fibromyalgia and Multiple Sclerosis The pain and Fatigue is the worst.

Buzzy Bee so glad you are feeling better.

After many,many months of living in severe pain, I finally laid it on thg eline with the doctor and told him if he didn't figure out what was wrong, I would find someone who ciould. After some blood work the decision was in. Severe Fibromyalgia. Mos tof the time I was bedridden, but I am now on a brand new med on the market that seem sto be working great. I also wa sput on a regiment of various natural pills, l.;ike Magnesium, CO Q10, Niacin, Fish Oil and a few other things that have really shown to work. I contacted JOhns Hopkins Dept. for FIbromyalgia and they advised me that the regiment the Dr. had put me on was one that was shown to work most of the time. Have some bad days, but don't have to stay in bed. Diet also has a great deal to do with it. No caffeine, low sugars, only wild caught salmon (not farmed) no dosages of dairy. So far, so good.