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Adrienne Dellwo

"Crisis Mode" With Fibromyalgia & Chronic Fatigue Syndrome

By April 18, 2014

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Blog Classic: April 5, 2012

At the doctor's office the other day, I noticed a poster about caregiver stress that listed warning signs of being "in trouble." One of them was: Feeling that you're in crisis mode.

That really caught my attention, because my husband and I have frequently used the term crisis mode to describe how we function when I'm not doing well. At times, it's lasted for months. Of course, it's horrible for those of us who actually have fibromyalgia and chronic fatigue syndrome, but it's also grueling for the people who have to do more while we do less.

What is Crisis Mode?

When we're in crisis mode, everything has to be simplified. My husband cuts back on overtime if he can. Dinners are usually from the microwave. Only the laundry that absolutely must be done gets done. Socializing? Forget it. Non-essential appointments are canceled.

I know my husband has been exhausted and frazzled at times, working full time only to come home and do laundry, cook, clean, shop and take care of both me and the kids. He's sometimes felt like a single parent.

It's hard on the kids, too. We've gone through times where I didn't have much to give them. It hurt to hug them, I couldn't handle their volume or rambunctiousness, and they've had to learn to do a lot for themselves at a young age.

We've called in help from friends and family when we could, but there's not always a lot they can offer. Everyone works and has other commitments, and a few have health problems - and limitations - of their own to deal with. And, quite honestly, sometimes they just don't want to do things for us.

It's one thing when we're in crisis mode for a few days, but if it stretches into weeks or months, it becomes difficult to function on any level. Anyone who sees that happening does need to take whatever steps they can to alleviate the strain. Some of my colleagues here at About.com have some great resources for you:

Information to help them understand your illness is here:

You can help take care of your caretakers by understanding that they may need to take time for themselves, and allowing them to be frustrated and even angry about the situation without taking it personally. (That is, as long as they're not directing negative emotions at you, which will only make everything worse!) Mental-health counseling may help as well.

What does crisis mode mean for you? How often do you have to be in crisis mode? What toll has it taken on you and others, and how have you dealt with it? Leave your comments below!


Photo © Christopher Robbins/Getty Images

April 5, 2012 at 7:23 am
(1) denise says:

In my household,when I am in a health crisis, it usually get ignore.

April 5, 2012 at 8:39 am
(2) Mari says:

My husband is sick as well. It is so hard. What I wish is that our insurance company would provide more than 12 visits to a psychologist. Learning to cope with chronic illness should be taught in medical schools, nursing schools and community centers to help all patients living with chronic illness. Families are broken, our bodies are broken and we need help. It’s not enough to want to help the other we need real soultions and it starts with the world waking up to others needs. We need our families and friends to stick by us through thick and thin as well. That is what would help us get out of *crisis* mode.

April 5, 2012 at 8:45 am
(3) Jana B says:

I have fibro, deg disc disease and deg joint disease. diabetes, migraines and many other things and I am the care giver of two people. Believe me its not an easy way to live.

April 5, 2012 at 10:17 am
(4) DFW Mom says:

Mental Health counselling actually increased our stress. Fibro is a physiological issue. Unless you actually have a psychological issue to go along with your physiological issue (many do, of course), then counselling is a waste of time and money, as we found out the hard way.

We found that our stress was reduced when we got off of traditional medicine’s hamster wheel. My daughter has primary juvenile fibromyalgia. We were going to pain clinic appointments, including Cognitive Behavioral therapy and biofeedback and hypnosis, and physical therapy, and counselling sessions, and taking various medications that did nothing to reduce pain, stiffness and fatigue, but had awful side effects. We were running as fast as we could, and getting NOWHERE.

We fired our doctor, stopped taking the nasty pills, stopped running around town for appointments that weren’t accomplishing anything, and quit the public school and started homeschooling (never thought I’d say THAT — we are the original reluctant homeschoolers). Life got soooo much better. She still has fibro, but after she got off those nasty medicines, it was like the sun coming out from behind the clouds. She’s losing weight (meds caused her to gain it), smiling more and more relaxed. There are no pillls to treat the cause of fibro, and you are better off not to take pills for symptoms, if they don’t actually significantly control the symptoms.

Don’t expect modern medicine to provide answer for fibro. At least, not until there is a breakthrough. They will sell you snake oil, and then tell you that it’s your fault that it didn’t work. They will misrepresent research results, so check their claims by reading the actual research. It’s a huge racket.

April 5, 2012 at 11:52 am
(5) Sheila says:

After several years of remission, some really horrific family news brought a huge flare up. What’s difficult is that people think the fibro was gone/cured. Sorry to say that’s not how it works. Illness of any kind, trauma, stress all can cause flare ups even after periods of remission.

My husband understands this and has always been supportive. If I am not able to cook we either get take out or he cooks. He understands if I can’t manage certain tasks and picks up the slack. I try to do little things to make it easier for him and or do nice little things to show my appreciation.

Freshly made bed with clean linens everytime he returns from a business trip, with his jammies laid out. Emails or notes of appreciate and love. Making sure that when I am feeling well that I do something nice for him.

I may not be able to lug laundry up and down stairs or in and out of the dryer, but I can fold it and put it away. Things like that.

We have found a nice balance that works for us. I wouldn’t call it Crisis Mode anymore..but Cooperation Mode!

April 5, 2012 at 4:43 pm
(6) Nel S. says:

Like Jana, I have diabetes, degenerative disc disease as well as COPD, arthritis, fibromyalgia, scoliosis, etc. I have eliminated all stressful people out of my life – including my own sister. I love her but she is so negative that it affects my health so I just don’t see her anymore. Because I live alone, it is easier to ‘hide’ the symptoms. I take Zoloft until such time as the crisis passes. I take Cellebrex for flare ups as well. One of the things I say to myself is ‘Would this matter in 5 years? If the answer is ‘no’, then I can’t let it bother me now’. Seems to help me.

April 5, 2012 at 6:36 pm
(7) kit A says:

Like you Nel I have the same conditions as you so I know what you’re going thru. Unfortunately I don’t have the financial ability to live alone. I live with my daughter and 3 overactive children; which you can guess does not help my fibro symptons. To make matters worse my ex lives next door & he’s about as sympathic as a box of rocks; takes great joy in agitating me; & despite the fact that his wife has fibro & lupus he’s no more sympathic to her. Guess why I divorced him? I’m sure my daughter tries to understand but she’s pretty overwhelmed with the kids & her demanding job so I more or less just “get thru the days” as best I can.

April 5, 2012 at 6:52 pm
(8) maria says:

Just like denise, my health crisis is also ignored, when it all started for me 6 years ago,my parents helped out but my dad passed away and my brother poisoned my mom s attitude towards me, my husband never did care nor does he now, my bro said to my face ,u r no good anyway for ur kids either ‘ i dont care if u die’ were his words that cut through my heart, my husband thinks it wasting money on me when i ask for docs visits or different meds,i am totally bed ridden now ,dont even have anyone to buy a toothbrush for me let alone clothing.
And all this for the people i cared abt and ruined my health after them,,even with all the severity of my symptoms i used to freshly prepare meals ,clean ,entertain just so family doesnt feel my illness is in the way of our life but no one there when i need them,,,i try my best to keep myself hanging on to the threads of life with these fibro sites my only solace and life,,and when i smile and try to be cheerful even if my brain is on a rollercoaster ,my family thinks i am looking good and not so sick maybe u know all the disbelief crap and depression labels etc….Dont know how long i can hang on like this

April 5, 2012 at 7:44 pm
(9) Pam says:

I am in it all alone too with fibro,fatigue and psychiatric disorders and don’t come close to having the right treatment. The only help I have is a public van ride to the store and I have missed it for 3 weeks. My house and clothes are dirty and so is my hair. It’s like i have had a total breakdown and no one noticed, I am invisible. I will be 62 next month and I used to do a lot better than this but I have slid to the bottom. At least we here understand each other. Thank you!

April 6, 2012 at 8:00 am
(10) Kellie says:

We have simplified our lives overall to try and reduce flare ups and stress modes. We hired a house keeper to help out every 2 weeks, and we don’t worry about it if we can’t get things done in between. We take work clothes to the laundry so they are ready even when I am not up to doing laundry. Certain launch dry I do just goes in my drawers unfolded… namely bras and panties.

April 6, 2012 at 8:05 am
(11) Kellie says:

Im worried about some of you. Have you considered counselling at a public health center to help you cope with the emotional fallout from Fibro?

April 6, 2012 at 10:54 am
(12) Kathy says:

Being single, for years I dealt with my fibromyalgia alone. Doctors and meds only masked the symptoms, plus they put me in another kind of fog. Now, family lives closer and I have a wonderful man in my life who understands – they all help to get me through the trying times. But, I’ve had to work my own way through the pain and depression FMS brings. There are things you can do to allieviate some of the symptoms. I’m certain it would be hard for those of you with families, but it’s worth a try. I’ve eliminate as many chemicals from household and personal care products as I can. Buy natural if possible. I use vinegar or Citra-Solve for a lot of cleaning chores. I cook fresh foods, eat fresh fruits and veggies. Processed foods are loaded with chemicals which will trigger attacks. I used to chew a lot of Trident gum, then learned that the sweetner Sorbitol can cause FMS symptoms. I’m on a gluten-free diet because I had symptoms similar to Celiacs disease… two weeks after going GF my stomach upsets and frequent rush to the restroom were over. Stay away from perfumes, air fresheners, scented soaps, fabric softeners – for myself, they trigger flu-like symptoms and reactive asthma attacks – I only use natural frangrances/oils. I highly recommend massage therapy – I go once a week for 1/2 an hour if I can afford it, otherwise my guy will give me a massage, and in turn I massage his bad back. FMS affects everyone differently, so for some of you these tips may not work. For myself, they changed my life. I’m not constantly in pain, crying or bed-ridden as I was 10 years ago. I still have bad times, but now it’s days not weeks and months. The one thing I had to repeat to myself through the years is that I’m not a superhero, I don’t have to make everything perfect. My mantra has been “Let go.” I hope this helps some of you.

April 6, 2012 at 11:57 am
(13) Tammy R. says:

I can work myself up into a crisis mode so easily. All it takes is one negative comment or criticism and I am headed toward trouble. And this is very difficult because I try very hard to be a “people pleaser”, something I’m trying to change. I”ve gotten myself into more bad situations just by saying yes when I really should say thank you but no. Inevitably, whatever I’ve said yes to, will eventually send me into crisis mode. Maybe someday I’ll learn…

April 6, 2012 at 3:57 pm
(14) Brian M says:

I don’t know that I have any other mode than crisis mode. I have been in nearly constant crisis for a decade, but there is no help available.

April 6, 2012 at 5:09 pm
(15) maria says:

Just like denise, my health crisis is also ignored, when it all started for me 6 years ago,my parents helped out but my dad passed away and my brother poisoned my mom s attitude towards me, my husband never did care nor does he now, my bro said to my face ,u r no good anyway for ur kids either ‘ i dont care if u die’ were his words that cut through my heart, my husband thinks it wasting money on me when i ask for docs visits or different meds,i am totally bed ridden now ,dont even have anyone to buy a toothbrush for me let alone clothing.
And all this for the people i cared abt and ruined my health after them,,even with all the severity of my symptoms i used to freshly prepare meals ,clean ,entertain just so family doesnt feel my illness is in the way of our life but no one there when i need them,,,i try my best to keep myself hanging on to the threads of life with these fibro sites my only solace and life,,and when i smile and try to be cheerful even if my brain is on a rollercoaster ,my family thinks i am looking good and not so sick maybe u know all the disbelief crap and depression labels etc….Dont know how long i can hang on like this

April 6, 2012 at 5:27 pm
(16) Marti says:

I’ve had Fibro about 15 years. Two years ago someone on these chats talked about Low Dose Naltrexone. I researched it and ordered it from the River Pharmacy in Canada, online.

My life is an entirely different place to be, now. Still annoying symptoms but not debilitating. And migraines stopped immediately.
As I am retired (due to Fibro), I sleep till I wake up, usually ca. 10 a.m.
I go at a slow pace and keep my mind alive. My habit of learning constantly takes my mind off my symptoms a lot.

But LDN did it!! and no side effects! and it’s cheap!!!

April 6, 2012 at 11:08 pm
(17) Deb says:

I was diagnosed in 2009 but had symptoms for years that had gone undiagnosed by the “Medical field” Finally went to an intregrated health facility and was told I had Hashimoto disease, CFS and Fibromyaglia. Wow I finally realized it wasn’t in my head and started holistic and natural treatments. I was managing through my flare ups and was had protected leave at work. Diagnosed with uterine cancer in 2010 and had a hysterectomy and fortunately no need for further treatment. Had a severe flare up after surgery that lasted a couple of months. This past January I had to have a hip replacement. I am still in flare up as this was a very extensive surgery and rehab. My flare up has made recovery very slow and painful. I live alone and have found it to be extremely overhelming. I am the only caregiver for myself and am responsible to do it all in the 9 room home I own with a large yard and pool. Would love to downsize to a small apartment but due to the current state of the real estate market, I am underwater and unable to sell. Extreme Stress has contributed to my slow recovery. For those who have caregivers, be grateful for any help that is given.

April 6, 2012 at 11:54 pm
(18) Mary Hildenbrand says:

Has anyone noticed how close the symptoms of Fibro and Hyperparathyroidism are to each other? Aches and pains, brain fog, memory loss, tired all the time and many more.

April 7, 2012 at 9:45 am
(19) Maria MB says:

As someone else said, going to alot of doctors and other health care practitioners puts me into crisis mode. I need downtime at home to cook, read a book, write a letter, rest. I have been stuck in crisis mode for several months with too many appts that I just can’t jettison at the moment. Last night I was weeping with the stress.

My husband is very understanding and flexible about my illnesses (primarily CFIDS, migraines and menopausal depression). However, one thing he doesn’t get is that when he has time off from his job and we’re home, I would really like him to help with the cooking. I can finally understand why my mother, who wan’t even sick, found cooking dinner every night really onerous.He works very hard and is 69 years old, so I know he has a right to “not having to do anything time;” but I really need his help with that! Cooking all the time, no matter how simple I make it, puts me into crisis mode.

April 7, 2012 at 12:20 pm
(20) Verronica Fremberg says:

Even when I am not in crisis mode I am still in a mode of trying to prevent a crisis mode from happening. I still have times where I am very angry at myself for having this fibromyalgia disease.
My husband is understanding about me having to go to bed early and does not say anything when I can’t work or do much around the house, but I am sure it bothers him.
I think what bugs me the most is because I don’t look like anything is wrong with me people on the outside don’t understand or try to understand.

April 7, 2012 at 8:28 pm
(21) kathy says:

I’ll understand if my comments are not considered appropriate, but I will be disappointed that the climate of political correctness has taken the turn it has. My fibro profile is typical-fibro for 17 years. I lost everything when I became ill. My job, my home, my vehicle, my spouse. So I have been living with this one and that one, so I have been blessed not to be homeless. But I do miss having my own home. I have the usual illness that seem to travel with fibro & cfs–ibs, deg disc disease, a skin disease that is red and flaky and has small sores in it. That is mostly on my legs and scalp. That’s why I have lost a lot of my hair. blah blah blah. I have been taking narcotics from pain specialists in the different parts of the country I have had to move to, and that is helpful. But there is only one thing that has kept me from chucking it all and doing my self in….and that is the love of Jesus Christ. I was not religious until after I got sick. And He has changed me and changed my life and comforts me like no person ever could. I can’t get out to church, but I have been blessed with unlimited time on my hands to read and study my Bible and watch favorite Bible teachers on tv or dvd. I was truly a heathen before I got sick, if you knew me, you would hardly believe how much the love of God has changed me. I have crisis moments quite regularly, and I run to Jesus. That is what works wonderfully for me. I, too, am concerned about some of you here. Please, think about what I said. Jesus does love you. And so do I. Oh, I forgot to say my age, I’m 60 years old. Bye.

April 11, 2012 at 10:12 am
(22) Tess says:

I feel very blessed compared to some, WOW!! I at least have a home and a wonderful husband! He doesn’t really understand though when I have to call in sick to my full time job or that some of the messes he makes around the house I only find more tiring to have to clean up later. My 19 year old son is worse, he won’t lift a finger so I forge on just doing the best I can when I can since some or most days, I don’t have a lot of energy or I have fibro fog or alot of times I am in “crisis mode” with high anxiety or pain. My husband just says “oh don’t worry so much”, I try not to but that alone is difficult. My other 2 daughters have their own lives so they help when they can. I have to say what’s worked for me as well, is trying to find something funny or postive about things. I like Nel S. saying “Would it matter in 5 years, if not…well forget it”, I think I will keep that in mind. Another thing is the FibroTV website, they have lots of very positive sayings and posters when you need a smile or just a boost or comfort to get through another day. Take care out there and try to keep smiling.

April 13, 2012 at 4:02 pm
(23) mary says:

All of my symptoms have been very bad I believe brought on by stress. I’ve been struggling with FMS/CFS for almost 20 yrs. My husband – who was always calm, kind, caring and understanding- now is hurtful and flies off the handle and sometimes screams horrific comments to me in front of my kids. What next? No treatment can work if I’m afraid to speak to my husband and have to hold all of my thoughts inside- I don’t have anyone besides my husband, daughter and son in my life. No friends- parents and siblings live in other areas of the country. Alone

April 13, 2012 at 4:40 pm
(24) Toni says:

I just prayed for all of you. My crisis mode is when I’ve gone for a couple of days without meds (cause they are causing me ulcers) and I’m tired and just can’t take the pain and fatigue any more. My husband & daughter help me and are sympathetic but honestly still do not totally understand. Still, they are gret in helping me since I got really sick (especially my husband – he’s now doing laundry and cooking and basically everything else) so I’m extremely blessed. It IS hard on him though and he gets tired and craky with me at times. I can also get very weepy as I feel horrible that he has to do all this for me. He’s burning out but refuses to ask anyone for help.

But honestly, for the most part (90% of the time) I’m filled with joy despite the pain and fatigue. And that is because of Jesus. I can just say ‘ditto’ to what one of the posters said above. Jesus changed me from the inside out and I’m no longer wallowing in sorrow or depression or anxiety. I have my moments (I’m human after all), but this disease has also been a blessing in many ways as I’m able to share my life story with others who see me struggling and still have joy in my heart. I’ve also been given the gift of encouragement and I’m helping others along the way too. All by email, facebook and other on-line mediums of course because most days I can barely move but to be able to help others despite my limitations is a huge blessing for me.

I pray that you all get the help that you need … the support that you need … the hope that you need. And you CAN find all these things and much more if you surrender your life to Jesus. He knows suffering like no other and he understands. He also loves you more than you can imagine and is just waiting to help you. But it’s your choice.

I pray you make the right one.

Sending love & hugs to all with hope & prayers for pain free (or low pain) days.

T xo

April 13, 2012 at 5:01 pm
(25) Brenda says:

I am extremely blessed to have a caring, compassionate and understanding husband. We are so in tune with each other all it takes is one look and he knows he must help me at that very moment. He very rarely complains. He has an extremely stressful job but we do what we can. What does not get done, does not get done. So be it. We also have a housekeeper bi-weekly which really helps me mentally and physically. I have learned to ask for help. Thankfully I am able to stay at home so do not have the additional stress of a job. In addition to FMS I have herniated discs, degenerative disc disease, myofascial pain syndrome and celiac disease. Not easy but you know what? I manage very well. The more I do the better I feel. I force myself to do as much as I can.

My passion is cooking. So, instead of lying down I get up and head to the kitchen. It makes me happy. It is important to have passions. Another is travel to Europe. It seems impossible. My pain is usually 6-7/10 but can flare to 9/10 easily. Flying is absolutely horrifying because the pain becomes nearly unbearable. But I feel so good after accomplishing it. We go every May and October so leave in 3 weeks. Believe me, I am terrified because the pain is not something I will ever forget. Being restricted to tiny seats in a seated position in turbulence when you cannot get up is unbelievably tortorous. But I do it because my dreams are big and I refuse to allow this to control me. I control it.

I do have weekly massages as well as taking meds which barely take the edge off.

The biggest help is having God in my life. He puts everything into perspective for me. In the past four years during my illnesses I have learned far more about myself, others and God’s character than my entire life up to then. It has taken me two years to get to this point but I have arrived and although I am always in pain I am happy, blessed and content.. :-)

April 13, 2012 at 6:46 pm
(26) Tina says:

The only crisis I can imagine would be that of something traumatic happening rather than every day stuff, stuff that goes with FM. I just get sick and tired of being sick and tired and imagine this, when I was well enough to work part time I worked in a crisis unit. Actually felt pain less concentrating on someone elses pain. I knew co-dependency would pay off some day.LOL Anyways, I have had my share of crises but I deal with them when they happen, don’t let negative issues pile up and remember to pace myself especially well at those times. I know only too well the pay back of not managing, it means a flare and pain, exhaustion, depression. Dealing with me on a daily basis with wellness strategies helps. God Bless us all! At least they don’t think all of this in all in our imaginations anymore. We have come a long ways.

April 13, 2012 at 7:10 pm
(27) Pr Chris says:

A question for those without many (any?) resources. Have any of you called a local church? If you were raised in a church and wandered away, consider calling one of that denomination, or call a church nearby…they tend to have members living close-by.

Ask to speak to the minister and be honest with him/her. Tell that person that you are in a disastrous place, and that you need help. Not necessarily financial, but someone who might be willing to help with laundry, or some other chose. Tell him/her that you might not be able to attend worship, but you are essentially isolated.

Often the minister will be aware of a couple of members who might offer to help out. The faith that calls people to belong to a worship community is also the faith that can lead them to help to others. If even one person makes contact, that can be a blessing. Tell the minister exactly what help you need. Do you need to have someone make a pharmacy run? Or provide a casserole or something that could be shared with you.

Many people are very willing to help others, but often they don’t know how to connect with people who need help. A good parish leader knows of some that will be a resource for you. It is worth a try…and it might be healing for your soul, too….

Pr Chris

April 13, 2012 at 11:02 pm
(28) Nancy says:

The comment above reflects the writers nonexperience with looking for help from their church. For the most part, they don’t believe you are really sick and offer no help of any kind.

My husband now has cancer. He’s had 2 surgeries and right now he’s in limbo waiting for the next occurrence. So although I’ve had ME/CFS & Fibro for nearly 30 years and now degen disc dis, neuropathy and other health issues, I have to figure out how to manage most everything myself.

I have no doubt that when the day comes (like when we’re in our 80s – we’re now in our 70s – our kids will come to our rescue – “maybe” someone from church – assuming we’re still alive. But for now, its just putting one foot in front of the other and looking forward to life after death.

April 14, 2012 at 6:49 pm
(29) Leona says:

I have had CFS/ME and Fibro for 13 years and was recently diagnosed with Myofascia (or something like that.) I had to quit work after two years and was in crisis mode then-was practically bedridden and got worse each year. Because of emotional issues, I got up and dressed every day, even if all I could do was sit in a chair and limp to the bathroom. I did (and still do) take vitamins and cut out all sugar, white starches and processed foods, but still gained weight.

Since I literally couldn’t get up and do much, my husband had to do everything or leave. We had a great relationship before I got sick, so things didn’t go too bad. I also learned to ignore his impatience and minor outbursts.

Almost five years ago I was so sick I thought I was dying. I was hospitalized with MRSA and the nurses panicked as they realized my oxygen was very low and I was so sick. After five days in the hospital, I was sent home with oxygen, a prescription for a breathing machine (I stopped breathing one night in the hospital and scared them to death), and a new understanding from my doctors about what I was going through. A social worker came to my house and arrangd for me to get housework help a few hours a week– so we eat better. (I was only able to cook meals with five minutes preparation.) I also got an electric wheelchair so I could leave the house once in a while.

I haven’t been in a crisis mode that bad since, but I do have bad spells when I can’t seem to think straight or do anything but play solitaire–and if I had to deal cards I wouldn’t even be able to manage that.

April 14, 2012 at 6:50 pm
(30) Leona says:

part two

I still can’t read much and hate phone calls. Even watching DVDs is hard because I get sensory overloaded so easily. TV was a nightmare and we turned it off. Everything I used to enjoy is gone because of this illness, and if it wasn’t for my relationship to Christ, I don’t know how I would manage.

I have an adorable chihuahua who is my constant companion, and that helps a lot. I’m losing weight, and that helps some, too–but not as much as I’d hoped. I’m still exhausted and unable to do much. But I catch the bus (in my wheelchair) and get mail three days a week and talk to the people I meet. I stay cheerful and hope I’m an encouragement. Like another person who posted, I do nice things to let my husband know how much I appreciate him.

I belong to a good church and was active in many ministries, but when I got sick it was like I disappeared and practically no one noticed. When my husband hurt his arm a few months ago, however, everyone noticed and he had offers of help from dozens of people. I’ve adjusted and now I wouldn’t want the notice of all the people, but it was hard the first few years.

April 19, 2012 at 2:55 pm
(31) Ray says:

Crisis? What Crisis? (supertramp album?)
When THOSE days happen, usually felt first thing in morning, I have learned to just put all on hold and take care of myself. Problem is, my work suffers because I have to put it off or run at 10%. Day at a time, small steps. Crisis comes up when the anxiety flares because of the “slow down”, meditation helps but wind up taking more naps thru the day to regroup myself.

April 26, 2012 at 10:49 pm
(32) mary says:

no answers-just more questions

August 30, 2012 at 9:24 pm
(33) Pamelakay says:

New diagnosis but have had the same symptoms for years. One BIG point that I will try to explain, in my own words, something I read and makes a HUGE difference. I am also an RN.
In the article I read, by an MD, he tries to point out a complete reversal of what I and many have been taught. Little “psych 101″. Which comes from
Fraud and his theory that some how our sub conscience and inability to cope and stress is the cause of some of the symptoms. What this MD said
is the exact opposite. The fibro causes the depression, and stress, bad thoughts and ideas. Which came first…. chicken or the egg…. I thought I was going crazy saying I’m NOT depressed, not anymore stressed then anyone else, I cope fine. I kept saying this to MD’s. They kept telling me I was depressed and had to much stress, exrcise more, meditate and pray. I already did all this daily before they told me this. What I’m saying is the fibro causes my depressed mood, crying, sadness, mood swings, paranoia, irritability. Not me and my lack up coping. When I have a flare I get the craziest thoughts, and have to say to myself, it’s not real, it’s just the fibro and it will pass. I am not clinically depressed. I’m tired of being told my stress caused me to be ill or my inability to cope. Always judgement from people. No my illness causes me to be stressed!! Blessings to all suffering from this!!

March 15, 2014 at 8:49 am
(34) Nina says:

Crisis mode is being without recourse. Crisis mode is when you’re staring at your one way out of pain for good, and you’re cowardice makes you collapse and cry. Crisis mode is insurmountable odds piling up, no money, no income, no help and you’re the biggest burden to family and friends that have huge responsibilities of their own. I just want to disappear. And I can’t and it’s driving me insane. The system is so broken for us. We’re treated like liars, drug addicts…all I want is care. There’s none without cash and I’d rather be dead than to feel this every day. It’s too much. IT’S TOO MUCH!!!!

April 18, 2014 at 8:39 am
(35) johna says:

I was last year in a crisis mode because of fibro and lupus. My husband helps me a lot and my parents and daughter even friends help me.
Im blessed !!!!

April 18, 2014 at 11:16 pm
(36) Becky says:

Has anyone been able to find a job that is done from the home? I need to find a bit of extra income, in addition to Disability.

I spent 21 years in an extremely high pressure, nonstop job that required a lot of overtime (surprised I have Fibro?). Fibro makes me feel overwhelmed easily, so I haven’t figured out what kind of work-at-home job would be best. Any ideas?

April 18, 2014 at 11:30 pm
(37) Becky says:

Does anyone have a work-from-home job? I am in need of some additional income, in addition to Disability. I worked 21 years at a very high stress, 60 hour per week job (wonder where my Fibro came from?). I cannot get into a stressful work at home job, because it overwhelms me immediately. I would appreciate some guidance if anyone can help, thanks!

April 19, 2014 at 6:07 am
(38) narelle says:

Thank you for all your comments, I have suffered with Fibro for 15years. I live in Australia. your input helps me cope. I am on my own as husband left after 32years because he couldn’t cope. I
wish him well(not)

April 19, 2014 at 11:41 am
(39) Bonnie says:

I have suffered with fibro and CFS for more years than I can remember. What I would love is something I could give my family and friends that

April 19, 2014 at 11:49 am
(40) Bonnie says:

I have had fibro and CFS for more years than I can remember. I would love to see something I could give to family and friends that easily explains how I feel even though I look fine. Does anyone have a simplified answer for this complex chronic disease? Thank you for having this site. It’s comforting to know I’m not alone.

April 19, 2014 at 8:10 pm
(41) Abot Bensussen says:

In crisis at the moment because Humana, my insurance co, is denying my use of Xyrem for fibro after 7.5 years! I know it’s expensive, that’s why I bought insurance, and now, what do I do?

Tried cutting down usage and ended up with more pain, less deep sleep, at night and trouble staying awake during the day! Hoping that my Rep., my Counsidlman, can help convince Humana to continue paying for this necessary sleep medicine. Can’t stay awake without it!

What more can I do? Does anyone else have a prescription for Xyrem paid by their insurance? Help!

April 20, 2014 at 8:01 am
(42) S says:

I have had two severe “crisis modes” in my 10 years with these diseases, CFS and Fibro. I also have a low functioning immune system (low Igg) which causes a lot of infections, but not low enough that I can receive treatment for it that my insurance would cover. I have found some friends very supportive with words, some family members kind of supportive, none live close enough to help. But my husband has been extremely kind and supportive even though he is struggling with his own issues right now.
I too have turned to god when I can find nowhere else to go, I find it very comforting to talk with god when I am extremely upset and frightened.
I do get very angry with some “friends” in my life when they make suggestions as to what they think would help me when they have no idea what the illness is or have even bothered to do a bit of research to see what I am going through. One of my old friends ( I don’t consider her a friend any more) was making dinners left and right for another friend because she was pregnant, a very kind thing to do mind you, but never offered to help me in anyway what so ever. And I was in bed for at least three months during that crisis! She is the most devout Christian I have ever known. It just goes to show you how much ignorance and invisibility these diseases have surrounding them. I pray for people with these illnesses daily, so please no you are in my prayers! I really pray for headway to be made on research and treatments for all of the ” invisible illnesses” as it is so difficult for us to take action in this area ourselves!

April 23, 2014 at 2:08 am
(43) Jean says:

I have been in crisis mode many times with my fibro and chronic fatigue/kidney pain. I went to pain management clinic and learnt to have more of a positive attitude when I get sick, (telling myself tomorrow is another day and things may be better). Having this attitude helps you stress less and breaks the depression cycle, even if you are sick for a couple of weeks you know you are going to have good days again. Focus on the positive not negative! Also pace yourself when doing house work. Gradually build up your fitness levels by increasing walking/exercise weekly. I have also been taking a small dose of Lyrica for a couple of month for my nerve pain. I have put on a little weight but its better to have less episodes of sickness and Carry alittle extra weight than to be slim and frequently in pain. Although I do contribute my positive attitude to having less crisis episodes.

April 23, 2014 at 2:21 am
(44) Jean says:

I have been in crisis mode too numerous times to remember, but mostly in the past two years. I have Bi-Polar disorder FM/CF, chronic kidney pain resulting from kidney infections and kidney stones and a low immune system. I went to a pain management clinic and this helped with me now having a more positive attitude, less anxiety and depression. There is a term for carers who are worn out or stressed. They get compassion fatigue because they feel all they do is keep giving! I have learnt not to take my husbands attitude personally when I get sick. I have been gradually improving with my health over the last three months due to skills i learnt at the clinic and being on a small dose of Lyrica. I have put on a small amount of weight due to medication, but its better than the alternative

April 24, 2014 at 7:56 pm
(45) Lucy says:

I think you might surprise yourself with how possible it is to exist with minimal effort. I had two years of being very severly (fully bedridden..part of which I was in a coma) ill, where there was no help offered or given. My children were 5 and 7. The oldest got herself ready for school and traveled on the bus. I don’t know what the other one did. I was unconscious at times, other times in extreme pain, other times when I got up to go to the bathroom sometimes crawling, sometimes fighting for every step, I put on a load of washing. My school aged child put it on the line. No pegs. Amazing how much fuss we makeof things that do not matter. I used to have to have my sheets smooth and folded down just so. After this I existed in a fully wrinkled bed with blankets whereever they landed when I got back in. All this from me, a person who was an immaculate housekeeper before. I was a single mum as my husband had walked out, going back to his mum where things were done for him. All up I have now been ill for 19 years. I can just keep on top of everything to a very high standard in my two bedroom unit but if I add anything on top of that I fall behind for a while. …even if it is phone calls or two hours out. If I have visitors for five hours I have at least five hours bedridden afterward. Microwave meals are my way of life. People who are well have so much be be grateful for. I’m grateful for the internet and that I live in a developed country. I certainly would be dead if I needed to walk to gather water or firewood for daily cooking.

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