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Adrienne Dellwo

Recovering From Flares With Fibromyalgia & Chronic Fatigue Syndrome

By December 27, 2010

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When you're up to your neck in fibromyalgia and chronic fatigue syndrome symptoms, it's hard to think of anything other than, "When will this end?"

The combination of things that will help ease a flare is different for all of us, but by sharing the things that work for each of us we can give each other ideas of what to try.

I try to keep several things on hand all the time, and especially when I know some event or circumstance is likely to trigger a flare. They are:

  • Epsom salts, for long, relaxing soaks that relax my muscles.
  • Good supply of medications and supplements, so I don't run out, and also because I take extras of some supplements.
  • A full pantry & freezer, so I have healthy, easy-to-prepare foods to eat.
  • Movies and shows on DVR, so I can just lay down and stare at the TV.

Good communication is also key. If my husband knows how I'm feeling, he knows what to expect from me. I also try to remind him that at certain times (like right after Christmas), I'm going to need some recovery time.

What helps you get through a flare? What symptoms does it help with? Leave your comments below!

Learn more or join the conversation!


Photo Stockbyte/Getty Images

December 27, 2010 at 11:58 am
(1) Rachael says:

One of the best things I have found for easing aches and pain after a flare is “Salmon Oil”. I find it’s like putting fuel in an empty gas tank. I take one a day, everyday and have found it to be very helpful for easing some of the physical symptoms of CFS.


December 28, 2010 at 7:36 am
(2) Jessy Girl says:

I think plenty of rest with a book helps keep me calm! I always need heat & lidocaine patches too! I keep having to learn that my body will tell me what to do! I just need to start listening.

December 28, 2010 at 11:52 am
(3) Rio says:

This year I had three IVs full of good stuff right before Xmas. I was able to withstand a large family whirlwind. Of course, I crashed on Chrstmas day right after massive gift opening time, Benihanna and The Little Fokkers, and had to bow out of a Christmas dinner to get in bed. I have finally learned to put my needs first and that is a major accomplishment for an adrenalin junkie. Sometimes life is unfair, so what, tomorrow will be another day full of promise! Hang in there, power to the fibromites and Cfidnators!
Happy New Year,

December 28, 2010 at 1:29 pm
(4) donapoole says:

I am wondering if any one has ever used Nortriptyline for fibro? have been told it works on the nerves.

December 28, 2010 at 10:33 pm
(5) JohnBit says:

@donapoole – Nortriptyline didn’t do a thing for my peripheral neuropathy. I’m currently on Cymbalta and it doesn’t work either and I hate it. I’m going to tell my doctor I want to get off of it. I also want to get off of the Provigil. Who knows what all this trash is doing to me? I can tell you this: it isn’t helping.

December 29, 2010 at 1:05 am
(6) Joel says:

Please hung in there, it took me 6 week for cymbalta to work
It does not kill all the pain but it helps a lot . Beside that I have good reasults with homeopathy :rhustox. Good luck

December 29, 2010 at 7:14 pm
(7) yahoody says:

I like Provigil provided you take the right dose. For a while I took 100 mg in the morning. I’m up to 200 due to winter exhaustion. The key is taking Melatonin at night to help you sleep. You can get it over the counter. I found it at Costco. My doctor says it is a good balance – provigil helps me over the 2:30 afternoon wall I hit and then I get a good sleep with Melatonin (take about 1/2 hour before bedtime.)

December 29, 2010 at 7:17 pm
(8) yahoody says:

Topic- Sex. My husband is heavy and my back isn’t great. He has had both knees replaced. We haven’t done “it” for a while. Feedback- does it exhaust you or give you more energy because of endorphin release? Is there a recommended position?

December 31, 2010 at 3:44 pm
(9) Cheryl says:

I am in a major flare!!! This year seem’s alot worse than the past few. Been sick since 1985 and I still can’t believe the after Christmas/ Holiday devastation !! It is so depressing. I wanted to make a nice Lasagna this weekend but I can’t even manage that!!! It’s time to relax, but I am too sick to even have that happen. You would think after all this time I would be used to this but I was so active and “ALIVE” before 1985. It is just a bad patch…Hope you all hang in there. :-)

December 31, 2010 at 4:36 pm
(10) mrag says:

Happy New Year, Hi. Please anyone who has just been diagnosed, be very aware that some medication for some
people can be very dangerous, for myself I found it to be
amotryptoline. For some it seems o.k but for me it had dyer effects on my mind and physical reactions ie crashed my car,
couldnt stop crying and shaking. Best advice make sure your partners observe any changes in your behaviour. Good luck
to us all. x

December 31, 2010 at 4:50 pm
(11) Terri says:

I’ve been in a “Holiday flare” (and we even had a very mild celebration). The last few days have been really bad due to the damp cold weather. Today’s pain was so bad I crawled back into bed. But I couldn’t sleep due to the pain. I ended up slathering all the sore spots with Vick’s Vapor Rub. Blessed temporary relief!!!

December 31, 2010 at 5:50 pm
(12) Maggie says:

I would love some more feedback from people on what helps them. I am in the middle of a flare that started 2 days ago and having lots of pain, miserable at work. I just recently got back into the workforce after being out for 1.5 years. Acupuncture has been controlling my symptoms but I had to stop going regularly because of my work schedule. I’m struggling to not lose my job!

December 31, 2010 at 6:33 pm
(13) JohnBit says:

Thanks Joel – the Cymbalta helps a bit, but it isn’t worth the side effects for that level of relief. I was off work yesterday and today so yesterday I decided to see how I felt if I didn’t take it. It wasn’t good at all. Feelings of anxiety and an overall funk enveloped me. I went to bed and even though I was exhausted, I could only sleep for a short while at a time. I finally took the Cymbalta sometime around 5 AM. That was 13 hours ago and I still feel awful, but then again don’t we all.

December 31, 2010 at 6:33 pm
(14) JohnBit says:

Maggie – I can relate all too well. I am constantly in fear of losing my job. I lost one back in 1996 due to this and if I lose this job I know I won’t be able to go through the stress of trying to find another one. Just thinking about it… well if you are a PWC then you know what that does to us. Do what you can to hang in there. Perhaps you can request accommodations under the ADA?

A week ago I finally “came out” at work with a request for accommodations due to disabilities (CFS & now peripheral neuropathy). I’ve been with this company almost 14 years, but I now find I just can’t do it anymore – it’s killing me slowly. Cognitive issues are astarting to show through and my management isn’t supportive or understanding – they only care about how it will impact them. When meeting with HR the 1st thing my manager asked was, “can you move him into another group and then open a job requisition so that I can get a replacement for him”?

They skipped right over providing accommodations (my manager said “can’t do” to all of them) and are “guiding” me towards short term disability which is fine but without a supportive doctor I don’t know how far I’ll get or how well I can deal with the stress of dealing with the insurance company. I was out for 2 weeks on STD last April for the PN and they seemed to do everything in their power (lose documents, etc.) to wear me down. They didn’t know about the CFS then.

I just started speaking with other people with on FaceBook that have CFS. It’s so new to me; to have people actually understand what I’m talking about and not reply with comments like, “you’d have more energy if you lost some weight” or “I get tired too”.

What gives me relief? I don’t know, but I’ve been searching for 25 years. If I find it I’ll let you know.

Good luck to us all in this new year!

December 31, 2010 at 6:54 pm
(15) Nancy OK says:

Hello and Happy New Year to all the fibromites!
I originally intended to post and whine and complain but first I wanted to read everyones comments. I am so glad I did. It was like a light bulb going off. Theres my symptom, theres my problem. I am not imagining this. Its real and others suffer as I do and many so much worse. I had never heard of flares, or 2:30 letdowns or my body won’t let me relax. Everyone thinks when the cold front comes through its arthritis. Sure I have all this and have suffered for over 11 yrs but I have a problem with myself. I keep thinking I need to push, push, push, to get everything done. I look fine so no one can understand the suffering so I put on a good front.
I have been on so many drugs and I just want to tell the dr. to put them where the sun don’t shine. Give me a hot bath, a heating blanket, and some pain meds and I will eventually get better on my own. I also use bio-freeeze for the painful spots and a tens unit for large achy areas.
Thanks to all you that gave me a good day altho there is a cold dampness in the air and my letdown and flare all came on the same day. It is so good to find relief by knowing I am not alone. Thank You!

December 31, 2010 at 7:01 pm
(16) Maggie says:

JohnBit- thanks for your comments. I started working a month ago and have already “come out” so to speak after I got really sick causing me to miss 4 days and then had a severe flare up causing me to miss another day…then I got a “pre-warning” about absences. At this point I told my supervisor that I have FMS and when I catch the office bug it is worse for me and lasts longer than for others and also that I do have flare ups. If I can just make it through the next 1.5 months I can work from home which will be easier- I think. I’m also having problems with concentration and “fibro fog”. I’ve heard that Adderrol is prescribed for this and wanting to ask my dr but fear his response- I’m already on anti anxiety meds and pain meds. I’m a mess at 33 years old. I have been very anxious and depressed lately, the holidays, being back at work and struggling to have ANY life outside work…all I want to do is rest when I get home and on my days off. The job I got was listed as part time- well it is 37.5 hours a week. I was hoping for something more like 20. I take vitamins, energy supplements and drink sugar free red bull, and still I sit here in pain and about to fall asleep. :(

December 31, 2010 at 9:59 pm
(17) NanaMolly says:

I love a hot bath with Epsom salt and essential oils. When I can afford it I get a massage and take a day or two off work. Since I work for the federal government the know the law and I am treated well. Herbal tea and honey is my best viral remedies and I take nearly no pain medication now dice everything has had unbearable side effects. A good herbal sleep aid is my best friend. I hope these help. If you’d like the name of any of the teas or herbs drop me a line at supernanamolly at gmail dot com. I sell nothing I only offer what has helped me.

January 1, 2011 at 10:09 am
(18) Vera says:

I wonder sometimes if this is a never-ending flare. I was put on gabapentin last month. I took it for 3 days and YUK! nausea and dizziness to the max. Then I wondered if I had a sinus infection because I still felt like this. I hesitated going to the clinic because I had just done a 10 day regime of biaxin at the end of November (for a sinus infection). I finally went yesterday and was told, “You definitely have a sinus infection.” So now I’m on another z-pack. Does anyone else have frequent bouts of sinusitis? I take OTC ibuprofen for the fibro pain as well as Esgic for headaches. Have trouble with sleep even with 150 mg. of trazodone and .5 mg of xanax. Oh well, maybe 2011 will bring some relief!

January 1, 2011 at 11:10 am
(19) wilted45 says:

Hello Maggie, I understand your reach for the energy supplements, and sugarfree redbull, however if I remember correctly fibromites are actually more sensitive to the ingredients/chemicals in these things. They may be actually enhancing the pain. You might want to research it out.

January 1, 2011 at 11:57 am
(20) JohnBit says:

Maggie – wilted45 is right. You should completely avoid all artificial sweeteners – they are your worst enemy.

For sweeteners I use amber Agave extract in everything. It’s a natural sugar with a low glycemic index and load glycemic load so it doesn’t spike your sugar which I believe triggers your “broken” immune system to fight this perceived intruder. It’s very tasty – I get mine from Amazon on a scheduled delivery so I get a 15% discount and free shipping. I’m currently experimenting making dark chocolate with it.

Honey is probably a good choice too, but I haven’t researched it like I have Agave extract.

Good luck!

January 1, 2011 at 5:18 pm
(21) Maggie says:

Thanks for the suggestions. I feel that because I stopped acupuncture and my pain returned that is the problem. Luckily I have a new work schedule and can have weekly appointments again. After a mouth of not going regularly, my legs are cramping badly again and knots are beginning to form. I’ve was drinking sugar free red bull when I was doing better so I’m not sure that’s the culprit. I don’t think I have food/beverage sensitivities, if so, I haven’t discovered them. I know I don’t have celiac because I was tested for it.

January 1, 2011 at 8:22 pm
(22) Thomas says:

I have learned some new things about CFS / Fybro from reading all the comments above. I am surviving my worst bout since the onset 5 years ago when I tested pos for HIV and started HIV meds. I usually up and down cycles lasting 1-2 months. Current cycle is 3 months of fatigue and pain. I take lexapro and clonopin, lyrica, and just got off oxycontin. I am 48 and have not been to the gym in 3 months, and use to go every other day. I have terrible tinnitis and dizzininess, and used to be a very social, funny person. I got the HIV from a cheating partner of 10 years which doesn’t help. So, mostly I am grieving my health and vigor, and barely survive my daily routine of taking care of our two dogs, cleaning, cooking, paying bills. I am lucky enough to be on Soc. Sec. Disbility, but I did have to take a 50 percent cut in pay. I just want my energy back. I also have bone on bone in right knee and need knee replacement surgery. 5 summers ago I ripped a whole in the ceiling and built stairs up to our attic and added a huge room, in the heat of summer, with out breathing hard, and now I am fatigued all of the time. It is such a difference in lifestyle. I was an active flight attendant for 25 years and now I am surviving at home. I just need some good info and help. My doctors say they have done everything. I have tried chiro, acupunture, herbs, supplements, energy drinks, hot baths with salts and oils, and feel stuck and out of options. I meditate daily, and tell myself it could be worse, I am not a complainer, I just need some new advice. My head also feels like it is pressurized with water and cotton balls. Does anybody out there have any ideas? Thanks

January 1, 2011 at 10:19 pm
(23) Jamie says:

I am glad to see that I am not alone. Somehow that alone helps a lot. Where I work, they are not working with me even though I got a bunch of paperwork filled out by my Rheumatologist saying that I would miss approximately 4 days a month, give or take. I have gotten 3 letters saying that I need to come to work or that they will have to terminate me. I’m not sure what to do because sometimes I just can’t make it to work. I would like to get on Disability, but I think you have to be unemployed for 1 year before they even will start the process. I am single and could never afford to do that so I just continue to deal with this abuse at work. I just started taking Melatonin after my Trazodone stopped working altogether. I take Cymbalta and Klonopin, but can’t afford to take Lyrica plus it makes me feel terrible. Does anyone have any suggestions?

January 1, 2011 at 10:25 pm
(24) Maggie says:

I would suggest acupuncture to anyone who has not tried it. Also, I think all of the “fibro” meds are crap. I tried Savella and Lyrica and they both made me agressive and anxious. I was about to rip my boyfriend’s head off for simple matters. My pain dr said for me not to even try Cymbalta because aggression is a main side effect. A good balance of meds, herbal products, vitamins, acupuncture once a week and massages 1-2 times a month controlled my symptoms til I stopped the acupuncture. Well that was a huge mistake I will be going weekly starting this week. Also I stretch on an exercise ball after work to pull my back muscles out after sitting in front of a computer for 8 hours. The ball helps stretch my legs too as they account for about 70% of my pain.

January 1, 2011 at 11:20 pm
(25) Kimberly says:

Oh guys, I SOOO feel your pain! I was off work 2.5 years and have been back 1 yr and 4 months. I have no insurance, (well I do as of today, YEA!!!!) and have been scraping by on bare bones for medical care and meds. I had no Christmas or New years Eve this year as I worked (16 hrs on Saturdays for the past month) and I am in such pain. Next Saturday is my last 16 hr day, and I pray I can make it. I am exhauseted, and only get about 4 hours of sleep a night Friday and Saturday nights. Life is way too crazy right now. I am so glad to know that others are feeling my pain(not glad you hurt, but that you understand). Going to a rhuematologist soon, maybe they can help?? I have also been diagnosed with Endolymphatic Hydrops (a variation of meniers disease) and so have nausea, dizziness, and tinnitus, migraines, and I am also hearing impaired. It feels like we just can’t catch a break sometimes does it not? I know that stress is kicking my butt right now, am looking for ways to cut that (getting rid of the bf, that I thought was so understanding, he is causing me untold stress) and getting some debt paid off so I can live pay check to pay check. Wow, seems like I am really whining, but I do not mean too. It is just nice to be able to tell someone who understands and does not judge you because they can not understand. May God bless you all richly this year and for all the years to come! I will say a collective prayer for you all!

January 1, 2011 at 11:26 pm
(26) Christa says:

Yahoody: There really are ways around just about every physical ‘limitation’ when it comes to sex. He could be behind you, with both of you lying down (that way he has his hand if you need the stimulation). Also, you can be sitting on the back of a high couch and he can be standing in front of you. just thoughts, email if you like. I think that sex is so important especially when we have limitations for connection, stress release and endorphins. Plus, there are all those fun things to do that don’t include intercourse.
Cymbalta has been great for me with no side effects at all. Lyrica was a disaster. Elavil was given to me in a hospital for sleep in what was probably a high dose. I heard voices for 10 hours! The one thing I believe we have in common is a low tolerance for meds and we need to start them at very, very low doses.
I really believe we are not meant to eat chemicals and preservatives and food grown in poor soil and pesticides. I no longer use lotions and shampoos with chemicals (and especially not tested on animals.) It doesn’t mean your only options are watery, yucky products. A great website for supplements, teas, lotions, etc is luckyvitamin.com
A little self care goes a long way. i have to work and I started my own business because of all the sick days! I don’t work a full day and I make sure there is at least one day of rest in the middle. Helps a lot. Taking the time to make myself tea (Yogi teas are fantastic!), give myself permission to rest *before* I hit the wall and asking for help are the things I’ve had to learn the hard way.
i’ve had wonderful luck with a good chiropractor, advil I’m NOT shy about using or something stronger if I have to. Sleep is probably the most important and most frustrating thing and i will not compromise on that.

January 1, 2011 at 11:39 pm
(27) Christa says:

I can add that eating sugar and white flour products, etc gives me a kind of hangover the next day. In the summer, I raid the Farmer’s Market, cook tons of veggies and bought a chest freezer. I just did that this year and a few months ago, I crashed harder and longer than ever and it brought me right back to when I first was sick 1 years ago. Catatonic, utterly weak and unable to do anything. Thank God for friends, I even sent my dog home with one!! What was different, is that I didn’t panic. I simply woke up each morning, told myself I wasn’t going to be able to do much of anything and that just was out of my control. Slowly but surely, I went through the food in my freezer, friends came and did laundry and shopping and just visited… And it crept slowly away.
For simple but healthy food, I buy organic yogurt, good quality granola (without all the sugar and junk) and berries. Costco has great prices on fruit, some organic. Bananas, tangerines, etc. I’ve just learned and really believe in NOT heating food in plastic. Instead I use a glass bowl and cover. I watched Dr. Oz and he explained what happens when the plastics plus heat drive the chemicals into us. Even plastic shower curtains when the water is hot! Im definitely not a fanatic but these things make sense and they are easily worked with.

January 1, 2011 at 11:41 pm
(28) Kimberly says:

@ Christa
Sex is definitely something one should not do without! I refuse to do so, one way or the other, I am NOT giving it up. Although I do have to say that there are certain things you will have to discover about your own limitations and what works or does not for you. The love and closeness one shares is unmistakably “helpful” as well as the end result (of course ;) ) but even lieing in bed holding hands and talking about your love for each other and the comfort your mind and heart receive is not to be overlooked as well. It may not help your pain, but it will help your mental and emotional state. There are many positions, to try (kamasutra) and something is bound to work for you. Good luck to yahoody on your quest for comfortable love!!

January 2, 2011 at 10:34 am
(29) marie says:

I tried the Cymbalta, gabapentin and a lot of the others. I was finally put on Lyrica about 2 months ago and I also started taking D-Ribose after a friend heard something on the radio about it. I have not had a MAJOR flare up in about a month and except for the arthritis in my back, I have had a lot less trouble with the pain and morning stiffness. The ribose is a sugar so if you have diabetes it probably isn’t good for you. This exceptionally cold weather is yucky, but even that has not been TOO bad.

Hang in there everybody!

January 2, 2011 at 12:46 pm
(30) Julie H. says:

I’ve been sick for three years now and at 31, it’s very hard. I have two small boys and a husband who took a while to be supportive. Before I got sick, I was a medical writer and had a lot of good relationships with doctors. So I’m very “informed” about what is going on. And new therapies. I have tried all of them and only found one to be helpful. I read that a lot of you want to know more about anything that might help. I have nothing to gain suggesting anything, and will admit that the treatment no longer works for me but has been a miracle to a lot of sufferers. I’m also looking for people to connect with via chat and email with CFS/Fibro. It’s a lonely disease. Thanks and good luck all.

January 2, 2011 at 3:12 pm
(31) Rie says:

Yes, the TV helps get your mind off of problems and that causes pain. Meditation also works while you are meditating. I still have to fall back on pain meds as I have had 2 back surgeries. I am also trying to get a divorce but my husband has been missing for 4 years. Try and float through the days. Muscle tension is the worse. I am trying teas and keeping drama out of my life. Worry will get us know where. What will be will be.

January 2, 2011 at 7:58 pm
(32) Thomas says:

After reading all of these comments yesterday, I tried Ritalin today for the first time, 20mg in AM, 20 mg at 3PM. It definately helped with my chronic fatigue, and I feel more clear headed. As most know ritalin is used for ADHD and is a stimulant. Wish me luck. T.

January 2, 2011 at 9:10 pm
(33) mdicrist says:

I was wondering if anyone has tried Cobroxin topical gel and Cobroxin Oral Spray for chronic pain?

January 3, 2011 at 1:16 am
(34) Debbie says:

@JohnBit and Maggie : Hey Guys I so understand and know how you are feeling. I was diagnosed 4.5 yrs ago and have continued working, albeit with some accommodations on the side of my company; slightly shorter days (ie 7hr day) and one day working from home per week. Was working perfectly and we were all happy. Sadly, times (and people) change and most of the old management have now retired, and unfortunately we now have new management who are totally uninterested in this issue and have started putting on the pressure in insidious ways – , making comments (“Stop being a wuss”); checking time and attendance records, and phoning me at home for the most stupid stuff imaginable.”Forgetting” my performance appraisal, salary increase and screwing me out of my annual bonus! Undermining me with my staff and excluding me from group meetings etc. Not sure how much longer I can take this kind of pressure – as you know stress is not the best thing for us! But sadly there is no recourse and to try and find another job in this condition – well….

I live in South Africa and ME/CFS/Fibro are not recognised as a legitimate illness here – some medical aids in fact specifically exclude it for any benefit/treatment whatsoever! You guys overseas are at least able to claim disabiity, but sadly not here…

Anyway, hang in there and be strong – easier to say that when you are feeling strong! Love and light to you all.

January 3, 2011 at 2:58 am
(35) Terry says:

I am on 200mg of Lyrica twice a day plus 90mg of Cymbalta, Trazadone for sleep, Tramadyl for pain. All were begun at much lower doses so I’ve had few side effects. I also take my supplements with plenty of extra B’s. Work is a major issue and I’ve started looking into disability benefits. I don’t think you have to be off for a year before getting benefits but you will want to check all facts by seeing a disability attorney. Acupunture helps but only lasts a couple of days for me. Yoga helps. My OMM (Osteopathic Manipulative Medicine) doc has been very helpful. Much more gentle than a chiropractor. I set up an appointment with a renowned Homeopath in my area. If that doesn’t work I may try the Fibromyalgia and Chronic Fatigue Center, but there’s not one in my city so I’ll have travel expense too. Has anyone out there tried one of the FCC facilities? Has anyone tried a pain center? I understand that they treat pain by medication inserted into the back. It doesn’t sound like something I’d want but I know someone who recommends it.

January 4, 2011 at 3:30 pm
(36) Wendy says:

Hello fellow suffers, i have read all of your comments and its amazing how many of us share so much. I have experienced most or all of what you all have. It’s like I’ve been reading about myself. So for all of this i believe what works for me most is Soma, massage, lots of water and a heating blanket. I have had to learn that i need to take care of me so i can be of some quality to my family. Love y’all and know what you’re all going through.

January 4, 2011 at 11:30 pm
(37) JohnBit says:

All these 25 years I haven’t been able to talk to anyone about this invisible disease. Being able to speak anonymously and openly is so very new and I find that hearing everyone else’s story is validating – if that’s the right word. [slow today - many edits]

I’m not accustomed to talking about symptoms with anyone without being ridiculed or at the very best, just dismissed (oh yeah, I get tired too – lose weight and you’ll have more energy). I feel anxiety and dread when I see a new doctor. I’m so stressed out before hand that I often times crash before going. If I don’t crash beforehand then the rejection will surely send me into an emotional roller coaster ride.

I’m sure you’ve all experienced some of this too. We’re malingerers, liars, lazy and just trying to get out of doing work. Yup – that’s us. Not!

Then there’s the bum’s rush: an ID specialist at U Mass Medical I saw ran all the tests and then never listened to the answers I gave to his questions. When he asked me, “do you have night sweats” I said, “no, not since I started using a Chili Pad on my bed”. Of course, all he heard and wrote down was “no”.

Thank you all for letting me whine a bit. Your turn.

[b]New hope in 2011 [/b]- let’s support WPI’s efforts to show the CDC just how it’s done!

January 5, 2011 at 12:51 am
(38) Debbie says:

Yup, I also had the “lose weight and you’ll be fine” scenario. Guess what? I lost 25kgs and was still ill. So there. As for being malingerers and lazy people – as I said to my hubby : “You know, if I were a lazy person, this illness would be a godsend!” Sadly it mostly seems to affect us Type-A’s.

Before I got ill I used to love to sneak a few hours to go and read on my bed on a Sunday afternoon. Now I’m so sick and tired of HAVING to be in bed and being forced to rest, that I avoid doing it unless I absolutely have to!!! Having said that, reading remains one of my major pleasures in life – particularly as my brain turned to mush when I first got sick and I couldn’t make sense of something as simple as a magazine page! (This after being a really serious reader!). The good news is that you can rebuild your brain and I am almost back (in that area at least!) to where I was before! You just have to re-learn a load of stuff that you knew before…like stairs and opening a milk carton!! ;-)

January 5, 2011 at 2:35 pm
(39) NancyLL says:

Where on Facebook is there a place/page to speak with other CFS people. Except for CFIDS Assn. most of what I’ve found is related to Fibro only.

Re: Accupuncture….years ago…3 x’s each week for 6 months. What another waste of money, energy and hope.

January 5, 2011 at 2:38 pm
(40) NancyLL says:

So many posts are of people much higher functioning, physically. It reminds me where I used to be 5,6 years ago at the middle phase of this journey. I’ve implemented at one time or another most, if not all, suggestions mentioned. Good luck with them.

January 6, 2011 at 4:24 am
(41) Mary T. says:

@Vera re: sinusitis… Oh, boy! What a nightmare it is! I’ve been congested since Sept. 2009 – had a sinus infection + ear infections in both ears (despite having tubes in my ears). 3 doses of antibiotics later, the ears were fine but the congestion has not gone away. Some days it’s worse than others, but never gone. My doctors can’t find any reason for the constant runny/stuffy nose, hoarseness and face pain, even after a head scan. I wish I had an answer for you, Vera. If anyone else has any suggestions for relief I’d love to hear your ideas. And yes, I’ve tried decongestants, antihistamines, Mucinex, neti pots, steam, etc. etc. Arrgghh! Relief would be my dream come true (along with a cute guy that loves me and a good night’s sleep – with or without the cute guy)

January 6, 2011 at 5:39 am
(42) Kimberly says:

I have just had a few bad days. Went to the dr Wed. morning because my kidneys hurt. When I tinkled in the cup, they found out I had blood in my urine. So in my near future are a CT Scan on kidneys, gall bladder and pelvic area. Been running a low grade fever too. Doc also said my tonsils and throat are really read and swollen, it hurts but not bad. So, I go to the pharm to get my scrips, and found out that the insurance I have been waiting to get for over a year, does not pay for Lyrica. And my prevacid was 65.00 for a month. (The other 2 scrips were around 10.00 and 5.00 so they were free) I have a mountain of blood work to do and and a CT scan and a sleep study that need to be done. But am afraid my “wonderful insurance” that is not so wonderful will leave mw in debt up to my eyeballs.

On that note, anybody have any ideas about the blood in my urine? How about the sleep study??? Are they worth the money?

Yeah, and my boss asks questions about why I am going to the dr, then when I tell her I will make sure and bring a note, her tone changes immediately and she is like “oh, ok” but you can tell she did not believe me at first. I was very hurt, and a bit annoyed. The last time I called in (sometime in Dec.) she said that “I know you have health issues, but if you continue to call in we are going to have to do something different.” In an e-mail no less. Is there not something we can do??? I would hate to lose another job to this “thing” we have all “gotten”… ANy help???

January 6, 2011 at 12:12 pm
(43) JohnBit says:

@NancyLL – there probably are places on FaceBook (FB) where you can post openly about ME/CFS and fibromyalgia, but until very recently I did everything I could to hide my invisible disease because I always feared being discovered at work and then becoming a statistic of the next RIF (reduction in force).

The problem many of us face is our need for confidentiality because of this type of fear. You may ask, “why do we have to hide our disease when people with MS or cancer post so openly”? The answer is pretty simple; the CDC has done everything they can to belittle us and trivialize our disease while spending the money that was earmarked by Congress for CFS/ME research on elaborate ice sculptures and private trips on the CDC jumbo jet to “conferences” in Hawaii.

From posts I made on the CFIDS Assn. page, I made a couple friends on FB that are PWCs (people with CFIDS/ME) that post openly and that’s where I first saw that there were other people that were having the exact same issues that I was.

Well, as of today I am on leave from work under the FMLA and I’m applying for STD (short term disability) benefits. I know this will be a rough journey (fighting an insurance company) – wish me luck.

January 6, 2011 at 12:34 pm
(44) JohnBit says:

If by a stroke of luck I get onto permanent disability I resolve to become an advocate for all of you. I know the hell you are living and I pray that some day in our lifetimes it will go away.

Hopefully the Whittemore Peterson Institute will put all the pieces of the puzzle together in 2011.

Good luck (we all need it) and best wishes to all.

January 6, 2011 at 6:15 pm
(45) Revie says:

@Kimberly, Don’t waste your $ on a sleep study. I had one some years ago…they said I didn’t even have fibro…I slept for 244 minutes (with my own sleep drugs). They tell you to take the drugs which I thought was dumb. My friend went to the Mayo Clinic and had one. They said not to take the drugs because the study wouldn’t be accurate. It was a waste of time and $; also the bed had a funky plastic mattress cover under the sheet that made it uncomfortable. On the next day, you’re supposed to take naps. I couldn’t do that so they sent me home.

September 9, 2013 at 4:46 pm
(46) Marcella says:

I started having fibromyalgia symptoms around age 35 and it took me until I was 46 to finally find the answer to all the muscle aches, fatigue,and stomach issues. It was nothing more than low testosterone. I have been doing the testosterone pellet replacement for 2 years now and feel like I have my life back. No more feeling like a old person when I try and get up from a sitting position. I am now working 2-3 days a week and feel wonderful. Please consider this when looking for answers. My general doctor never mentioned it . I had to go to a hormone replacement doctor. Insurance does not pay but it runs about 50- 60 dollars a month. Well worth it , the pellets usually last 4-5 months.

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