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Adrienne Dellwo

10 Things to STOP Doing to Yourself With Fibromyalgia & Chronic Fatigue Syndrome

By January 10, 2012

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Do you beat yourself up? Overdo it? Expect too much of yourself or put too much stock in other peoples' negative comments?

When you're sick with fibromyalgia or chronic fatigue syndrome, it's easy to get stuck in these kinds of bad habits. They can do a number on your self esteem, and they may even become barriers to successful treatment.

For help identifying your bad habits, see:

Then, come back here and join in the great conversation (below) about which habits other people have and how they've tried to most past them!

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Comments
January 10, 2012 at 9:23 am
(1) Ashley says:

This is such an important article for a newly diagnosed person w FM as I am. I deal with every single one of these, especially numbers 4 & 7. I have to deal with being called and lazy every time I forget to do something or no longer have the energy to do something. I get criticized for having to nap often. Although I rarely do things for myself. Most of my day is spent doing things for either my husband or my sister and niece.or a job, since I’ve recently been laid off. Most of these things overlap, however they are all eerily accurate and applicable to my life.

Thanks for this post. I am going to print it and put it on my wall as a reminder.

January 10, 2012 at 10:12 am
(2) Connie says:

this is true .

January 10, 2012 at 11:18 am
(3) david says:

I have problems with most of them points on that list on a daily bases some day are worse than others depending what i need to do on that day.

January 10, 2012 at 1:50 pm
(4) Kathy says:

Have you ever read the book “How To Be Sick” by Toni Bernhart? She is a person with CFS who uses Buddhist practices to “help and inspire those who must meet the challenges posed by any chronic illness or condition: coping with the relentlessness of symptoms; weathering fear about the future; coming to terms with a life of relative isolation; facing the misunderstanding of others; dealing with the health care system; and, for a spouse, partner, or other caregiver, adapting to so many unexpected life changes.” (from her website at http://www.howtobesick.com/ )

I highly recommend the book. I just wish there was some way I could go someplace to learn more about this, but I live in a very small (and very conservative) town…so Buddhism isn’t really popular around here. Still, I think using the practices in the book helps. I just need more.

Recently I’ve experienced a lot of self-loathing over not being able to keep up, and not being able to create good relationships.

I got involved in Occupy and tried to do too much and sent myself into a flare. The people I was working with didn’t understand and treated me like I was a flake.

This, from an organization that bills itself to be “inclusive”. 99%….except, of course, for those who are disabled. It hurt and I need to overcome those negative feelings about myself. And the people I worked with. Somehow I feel like chaos and discontent follow me everywhere I go. And I don’t know what I’m doing wrong…

Thanks for writing this Adrienne…you made me realize that I need to take care of myself before I try to save the world :-)

January 10, 2012 at 3:17 pm
(5) Tammy says:

This is so good to hear from someone who is living with the same chronic condition that I am. I do tend to go past my level of fitness, just I can get the job done. Most of those “jobs” are self-inflicted because I do feel like I have to keep going and getting everything done for everybody else. In the end, my needs are never considered, by me or anyone else. I have been reading your articles for awhile and they have made me feel validated, that I am not crazy and that I am not alone. Thank you for sharing the truth as it applys to FM and CFS.

January 10, 2012 at 4:17 pm
(6) Lee Ann says:

I like to explain it as we are swimming upstream against the current, and everybody around us is wading in the shallow water, playing. I always hated it that I would drag in the house after work, barely making it to the couch. Yet my friends were going out for drinks, going to the gym, shopping, etc. after work.

Even tho nobody can see it, we need to remember that it isn’t our fault and we are not lazy. IF I did too much yesterday, I still feel guilty laying on the couch with a blanket. I also have narcolepsy so I have prescribed dexedrine. I take dexedrine when I need to do anything involving a long time or a lot of energy. but I pay for it the next day.

January 10, 2012 at 4:57 pm
(7) SusanP says:

I get so upset when people tell me I just need to have a positive attitude and keep pushing. They act as though I am just lazy. I feel embarrassed when I can’t keep up with others. I struggle most with that and with number 10. I blame myself and get emotional.

January 10, 2012 at 5:00 pm
(8) Tracie says:

#1 and #8 contradict themselves – kinda. I am trying to work out more. I am loving that my FM is not flaring up as much because of my exercise. However, when I get injured when I run or workout I am reminded constantly of #1. But if I give up or move too slowly, the rewards are not there (#8).

January 10, 2012 at 5:04 pm
(9) Ashley Wood says:

Sometimes, I think my mirror is my worst enemy. I start to believe all of the nonsense, you know, the “you don’t look sick.” I would be so upset with my children if they treated people the way I’ve been treated and the way I’ve treated myself. I also don’t like being made to feel lazy and incompetent because I can’t do things as fast (or at all) like other people. It may not be directly stated to me, but it is certainly implied and then I believe it and amplify it inside my head. I hate that people didn’t know me before I got sick because I’m still the same person inside. Thank you for posting this article, I really needed it and will share it with my friends also suffering a chronic illness.

January 10, 2012 at 5:04 pm
(10) Ashley Wood says:

Sometimes, I think my mirror is my worst enemy. I start to believe all of the nonsense, you know, the “you don’t look sick.” I would be so upset with my children if they treated people the way I’ve been treated and the way I’ve treated myself. I also don’t like being made to feel lazy and incompetent because I can’t do things as fast (or at all) like other people. It may not be directly stated to me, but it is certainly implied and then I believe it and amplify it inside my head. I hate that people didn’t know me before I got sick because I’m still the same person inside. Thank you for posting this article, I really needed it and will share it with my friends also suffering a chronic illness.

January 10, 2012 at 5:04 pm
(11) Ashley Wood says:

Sometimes, I think my mirror is my worst enemy. I start to believe all of the nonsense, you know, the “you don’t look sick.” I would be so upset with my children if they treated people the way I’ve been treated and the way I’ve treated myself. I also don’t like being made to feel lazy and incompetent because I can’t do things as fast (or at all) like other people. It may not be directly stated to me, but it is certainly implied and then I believe it and amplify it inside my head. I hate that people didn’t know me before I got sick because I’m still the same person inside. Thank you for posting this article, I really needed it and will share it with my friends also suffering a chronic illness.

January 10, 2012 at 5:15 pm
(12) Margaret Ann says:

I’m guilty of them all. All ways think of others first. Worry about every thing & every one. I’m always stressed Always hurting. Always putting my self down. I need to think of myself first. But probably won’t.

January 10, 2012 at 5:25 pm
(13) Pamela says:

number 3 and4 and 6 omg so tired of treatment after treatment negative comments and blaming myself when i have a half way descent day i do love my house being spotless but when im done i pay for it as of today my doctor will no longer give me anything for pain i was so upset when i left i figure i need to find another doctor which i did i wont give up with doing over 32 test this year and getting no where i need to do my own findings and try what works for me i told him today that for all the stuff you put me threw do you even understand what FM means what i deal with i no everyone hurts but everyone has different symptoms i have 21 points the specialist said they only look at 18 points from head to knees i said OK i must be losing my mind cause i cant walk my calf’s hurt and feet and toes he asked me did i fall duh i think id remember plus i dont drink kinda feel like i should start nah just a thought

January 10, 2012 at 6:03 pm
(14) terrygee says:

I was diagnosed back in the early 80′s after being made to feel like a nut job for years. Now that I know what I have I listen to my body and take care not to do the things that set it off. You have to be able to let yourself ask for help.

However, I have also been in several car accidents and have spinal fusions. We all know how hard it is to excercise with Fibro, but the added pain of spinal fusions has made it nearly impossible. I finally bought a pool to do water workouts in, but living in the Pacific NW it does not leave me a long period to work out in. You do what you can when you can and try not to let it get you down.

Seek support! Get reassured when you feel down! Always check for new ways to feel better. We can do it!!!!

P.S. Anyone know a personal trainer near Tacoma that will work for free on a Fibro client??? ;P

January 10, 2012 at 7:00 pm
(15) John Doe says:

There are many people that suffer from these chronic diseases. However there are just as many if not more that
do not have these medical conditions but use them as an
excuse not to work.

January 10, 2012 at 7:04 pm
(16) Diane says:

This is for Ashley…When your family or anyone else speaks to you that way that is called verbal ABUSE! Make them get off their lazy asses and make them take care of themselves!! They are adults not children and you are ill. Fibromyalgia has caused so many other issues with my health that one day I just said to hell with everyone including the drama people in my life and it left me lonely. But…..I learned how to be still inside myself and I crave the quiet and serenity now! People in my live understand that when I say do it yourself or no, that I mean it the first time. It took a long time for me to be ok with that but I am perfectly ok with that now:) I beg you not to let other humans demean you passive aggressive is not ok either!! So glad you are here and we can be a support for you!! You are truly welcome and loved here! Diane

January 10, 2012 at 7:17 pm
(17) Cheryl says:

Thank you for this reminder! Im a nurse and preach this to my patients with similar conditions and show them so much compassion, yet I am very hard on myself. I push myself way beyond my limits and pay for it with severe pain to the point where I can hardly walk. I’m going to print this and put it somewhere I can see it every day!

.

January 10, 2012 at 7:28 pm
(18) Gertie says:

What about someone that does nothing, I mean nothing on a daily basis, except to lay in bed mostly 24/7. Does that not have a tendency to let their muscles and such just disintegrate? Not to say that the house they live in is not healthy. I would think that eventually that persons organs, like heart etc, would stop functioning properly. I have someone very close to me with FM and I worry about this sort of thing constantly!

January 10, 2012 at 8:09 pm
(19) Sam Pagano says:

This is the best article I’ve seen in a long time! Thanks for posting Lani!

January 10, 2012 at 8:20 pm
(20) Myla says:

I deal with most of these. I was diagnose d at the end of 2008. Most common comment I get is “you need to stay active and exercise” by those who have no clue of the extreme pain I’m in. Unfortunely I have spent the last 2 years having severe allergic reaction to pain meds and muscle relaxers. It really ticks me off when I made to feel worthless and its frustrating to not enjoy all I use to.

January 10, 2012 at 9:04 pm
(21) Sophia says:

This is good for me to read. It makes me understand myself better and I realize all that I have thought and read is true. I know now that I am not alone. All of the things listed I am guilty of. My main worry is why me. I used to be a busy body and now I am thankful to get out of bed and hold down a job daily. When struggle everyday to do my job it’s all I can do to get home and sit on my couch or try to cook supper. I am just miserable. I want to exercise but I can’t even get up to do it. The more I do the longer I hurt. I just wished there was a pain killer that didn’t make you high or sleepy. Everything I have taken for relief puts me to sleep. I take Savella and it makes sweat so bad. I’m going to print this and hang a copy at home and in my office on my job.

Thanks so much, I really needed this.

January 10, 2012 at 9:05 pm
(22) Mary T. says:

Thanks for this, Adrienne – it came at the perfect time. I’ve been miserable since Xmas because I didn’t listen to my body. My body told me not to travel and I should have listened! Item #3 really hits home with me. When I first became ill and told my son, his response was that I’d brought this on myself by not eating a raw vegan diet. He didn’t speak to me for months! He’s convinced it will cure all that ails you, I’ve beaten myself up over and over about that. I tried the raw vegan diet years ago and just couldn’t stick with it so, after 7 months, I gave it up. I have to constantly remind myself that.it’s not my fault!
And Kathy – yes, Toni’s book is close at hand at all times. Her story is inspiring and her ‘tricks’ very helpful. I highly recommend it. And as for Buddhism, you don’t need a temple or group in your area to learn and practice Buddhism. I found my guru and sangha on line. It’s been wonderful and very helpful for me. Good luck!

January 10, 2012 at 10:11 pm
(23) Meghan says:

Thanks for writing this Adrienne. I’ve been bed-ridden for two years now because of FIBRO, CFS, and other related issues, and I still have trouble dealing with my limitations as well as letting go of my “former life”. I certainly don’t feel strong inside…this life beats ya down at every turn.

January 10, 2012 at 10:15 pm
(24) Jane says:

I struggle with many of these things. As the result of my FM and CFS (primarily the CFS) I had to leave my job last year and move back home with my parents. I still struggle with feelings of shame (that I couldn’t make it on my own) and frustration (that I am not leading the life that I want). When I have a “better” day I question whether or not I am lazy or crazy or both instead of dealing with a chronic illness. I constantly question why this is happening to me and desperately try to find the lesson. I haven’t found it yet. I wish I could figure out how to accept my illness so that I can accept where I am at and focus what energy I do have toward taking care of myself and trying to feel better.

January 10, 2012 at 10:31 pm
(25) joy says:

Love love love this article…I need to remind myself of these things almost daily. Thanks

January 10, 2012 at 10:42 pm
(26) JJ says:

Very good article. There are times that I am dealing with all ten, then other times I think I am doing most of them. Today, guilty of all ten and I am paying for them tonight. On top of FM/ME/CFS, I am dealing with bronchitis. I would love to be able to “stop” all ten.

January 10, 2012 at 11:19 pm
(27) Jennifer says:

This is a great article, unfortunetly I can relate to every single one of these! I see a couselor and he has helped me realize it but, I can’t quite get over it…I feel quilty, worthless, and many more..mainly because I can’t pro ide for my kids the way I should be and also it has affected most of their younger years and I’ve missed out on a lot due to how much I hurt all the time. I wouldn’t wish this on anybody, and I pray for the thousands or more that also have it!!!

January 11, 2012 at 2:04 am
(28) ali christensen says:

This is incredibly sensible, if fibro sufferers could just accept what has happened, that they have an illness that was not their fault and make sense of thier own limitations then life would be easier. What is not easy is all the people trying to help of hinder around them, giving advice and getting frustrated.

January 11, 2012 at 5:39 am
(29) Jessica says:

I am always putting others first and constantly burning out but still pushing myself because I have no other option. Being a good mother to my little one is hard because I’m always exhausted, she says to me everyday ‘mummy your not tired today’ and it breaks my heart.

January 11, 2012 at 6:10 am
(30) Lori says:

Wow! Thanks so much for this! I have been feeling so alone in this and reading everyone’s comments have made me feel somewhat better. At least I know I’m not alone and just making this up or it’s all in my head like people make you believe. It’s so hard to get used to. I think that’s my worst part…it’s hard for me to accept I have something wrong with me. I’m normally or I was anyway a fun energetic person. But not anymore! I’m nothing like the person I used to be and I miss that person =(

January 11, 2012 at 6:40 am
(31) Raymond says:

What a brilliant little article. I have had CFS/ME for over 30 years and it has taken me about that long to discover by trial and error what Adrienne has said in this article. They are very subtle negative thoughts that undermine you. The worst one I had was from a psychiatrist to whom I was referred for the depression that accompanied the CFS/ME. Once the depression lifted I was left feeling tired, but still in full-time work. He said that it was CFS/ME and that it was all in the mind and if I pulled myself together and made more effort to overcome it I would solve it. I did as he said (in 1988). Within a year I was too ill to work and had to give up my job.
Another help I have found is attending a positive uplifting ME group locally. It is really supportive of all the ideas in Adrienne’s article. (www.salus.org.uk).

January 11, 2012 at 7:55 am
(32) Tina says:

I suffer with fm and Cfs I get told to “push through” and I’m not that I’ll??? How do they know how ill I am? How much pain I’m in? And how terrible I feel when I can’t clean the house or cant play with the children? I’ve wanted to end everything so many times but I stop cause of my beautiful children. The 10 points are so very true! Thank you!

January 11, 2012 at 9:53 am
(33) Suzanne says:

Acceptance is the answer to all of my problems today!!!

The reason I say this is because what we resist persists.

For me, the best thing I have done for my health is to learn to love myself. The best book of all out there, in my humble opinion, is “You Can Heal Your Life” by Louise L. Hay. It teaches us how to love yourself. It takes time and practice (practice the affirmations, but it does work!

Be patient with yourself! Love yourself unconditionally!

There are support groups out there for Fibromyalgia sufferers. I learned a lot from the other women even though I only went to a few meetings.

There’s also a very good website called Experience Project that’s an anonymous sharing support site and have a great experience with Fibromyalgia sufferers as well!

Be well!

January 11, 2012 at 11:24 am
(34) Brian Ford says:

I suffer from severe fibromyalgia as well as heart disease and very recently learned from my pulmonary specialist that there is a link between fibromyalgia and right heart chamber hypertension. Anyone with both fibromyalgia and a heart condition needs to be tested for right chamber heart hypertension as this can easily lead to stroke or heart attack.

January 11, 2012 at 11:51 am
(35) Sonya says:

This a link to a newly formed group based on Toni Bernhard’s book How to Be Sick. Also, ther is a Facebook page for the book.

January 11, 2012 at 11:53 am
(36) Sonya says:
January 11, 2012 at 12:04 pm
(37) Steph says:

I also agree that this is an essential article. I have a multitude of problems on top of the Chronic Fatigue caused by Epstein Barr. I have not been able to cope very with it either. Not only have I had feelings of self blame and guilt, but also added guilt when my husband doesn’t understand. I often get the “why don’t you feel well, why are you so tired, drink some coffee that will wake you up”. We have been together 9 years and it is difficult to understand sometimes. I get frustrated because he is constantly pushing me, but I also push myself. I just started living by the terms of this article specifically putting myself first. I am doing better since I have started doing things for myself. And addition to this article should have been that we all need somtype of support system. It is tough enough when we feel alone and when doctors just want to give us antidepressants and send us on our way. Exercise has been a huge difference as long as paced. I have the chronic fatigue and am shooting to run a half marathon this year, you just have to listen to your body.

January 11, 2012 at 1:30 pm
(38) cathy marlin says:

I guess I belong to the club who does not know how to pace myself. But I am going to have to make myself because I went through a flare that set me back to pre-medication days. I am still hesitant to go to the fitness center because I have a tendency to overdue it. Now,just a little walking and I am in pain. I am going to have to take baby steps. This may go contrary to what some suggest which is work through the pain but they have not gone through a flare that started in December of last year. I am going to listen to my body. Before, I thought I could go every other day and walk for 45 minutes and then I crashed. I am going to take it slower now. To Mr. John Doe, We are all aware that there are those who use an illness or condition as an excuse not to work in America, but I do not think this is the forum to express your views. The tone and angle in your comment implies what so many of us express here that we have phantom pain, that there is “nothing wrong with us.”

January 11, 2012 at 4:09 pm
(39) NW says:

Sonya, I am a caregiver of a chronic pain sufferer and I have read the book “How to be Sick”. It is AMAZING!!! This is a fantastic article. I wish everyone were as supportive to chronic pain sufferers and their caregivers.

January 11, 2012 at 8:33 pm
(40) Deanna says:

Thankyou so much for this article. I am 25 years old and have had fibro for over ten years. And to this day, I still have problems with almost all of these. Its very tough to deal with, but with these tips, I think that ill be able to manage the way I think better

January 12, 2012 at 2:56 am
(41) Caly says:

I’m french… sorry for my english!
Fibro too.
No one here understands this disease, doctors… or family!
For them, it is only : arthritis… or depression … or worse, the lazy way to not move , not go outside!
It’s hard to hear people say that you are lazy because you sometimes stay lying in bed, and that nothing can relieve your back, legs, arms, neck… and so on…
*Unknown* disease in France, so there is no help to relieve!!!
You must move forward in silence, and especially not to complain because “you don’t look sick”!!!!!!!!!!!!!!!!!!!!
Where to find the strength to fight?
I’m so alone here with my fibro!
COURAGE to U ALL !!!

January 12, 2012 at 4:26 pm
(42) Ashley says:

Thanks Diane for the comments.

I’ll be blogging soon about saying no. I said no to a loved one today and the lashing I recieved in response was so horrid…and I wish I could say unbelievable…but it wasn’t.

Please check out my blog. It’s about a twenty something year old living with Fibromyalgia.

http://fromhighheelstoflats.blogspot.com/

January 13, 2012 at 12:18 am
(43) Chronic Fatigue Symptoms says:

Nice discussion is going by the good people and because of that i am getting so many things to avoid fibromyalgia and Chronic Fatigue Syndrome.

January 13, 2012 at 1:16 pm
(44) Gertie says:

Do you not read the other comments on here? I think it would help other people understand this affliction if you answered questions from the concerned people who don’t have this but have questions and are concerned about someone close to them, I think it would help the general public understand this. It is very disconcerting to not understand something like this. All you see from this side of the street is something you can’t see, and the person you love is taking a tremendous amount of debilitating very addicting drugs that eventually will destroy this person you love. I posted something earlier in this discussion and not one person responded to me! That is frustrating.

January 13, 2012 at 3:42 pm
(45) Shelley says:

OH, thank you, Adrienne!! I’m going to cut & paste
those 10 Things and place them where I can read
them on a hourly basis (if not more often)!

The HARDest thing for me to do is pacing myself!
On the days when I DO wake up feeling okay, I get
on a roll, and don’t want to stop, as I used to do!
When I do take a break and lie down, I fall asleep
for 3 hours……………aaarrrgh! I can’t get ANYthing
done; I’m so behind in my housework, laundry, etc.,
I’m never going to catch up!

Thank you for your always new, insightful and
encouraging newsletters!
:)

January 13, 2012 at 3:47 pm
(46) Lucy says:

Number 4 has been truly awful for me. As I struggled with the initial reality that I was never going to be well and didn’t even know if I was going to get even a little better, I had my sister make the statement, “I just know I am going to get stuck with you.” This while she constantly refers to me as her crazy sister. My only daughter basically started stepping up emotional abuse along with telling me I was never going to live with her. My brother just plain stopped talking to me at all. So, now my entire family has abandoned me. When I sent my grand daughter a birthday present, my daughter sent it back unopened with an ugly note. My husband is fairly supportive but not as understanding as he could be and that has caused distant and strain in our relationship.

This isolation is unbearable on a good day.

January 13, 2012 at 3:49 pm
(47) barb says:

dear adrienne, you don’t know how much i appreciate receiving your column, and you taking the time and energy and stress to write it for us. thank you. your tips and information are invaluable. i have sent them to all my family members, but, in the end, i don’t think they really have the time or interest to care about someone else’s problems, even if it is a brother, or sister, or aunt.

but, thank you, for caring and letting us know we are still valuable human beings. we will never know why this illness(es)have struck us, but it’s something we have to roll with. Personally, i make a point to keep my stress down. i don’t watch the news, read the paper, or watch stressful tv shows. those, in and of themselves, helps me tremendously.

keep up the good work, and God Bless you!

January 13, 2012 at 4:22 pm
(48) Aundrea says:

Wow, I am so glad I read this. I find myself feeling depressed that I’m unable to do the things I use to. I look okay, so people don’t really take my illness seriously and think I’m just being lazy.

Number 7 is one that really stuck out for me. Taking care of yourself is survival, not selfishness. I really need to get this through my head. I have always put everybody and everything before myself. Fibro won’t allow you to do that. Then I get depressed, then my symptoms get worse, and the cycle continues.

I am really going to work on that starting today. I’m off to take a nap!

January 13, 2012 at 4:51 pm
(49) JudyP says:

Wow! Do I ever struggle with these. I feel like I made a lot of headway with a number of these this summer though: we had bad wind damage in April, and lots of construction crew around from mid-may through mid-August. I found myself feeling guilty for taking a nap when I needed to, because I wasn’t sure what the workmen would think. It took a flare to realize – who cares what the workmen think? After they’re paid, we’ll probably never see each other again. Besides, I need to take care of myself.

We elected to do some of the inside work ourselves (meaning me), and I put the push on for 4 days to repair the drywall and prime a wall in time for the inspector. I had also bought all the materials. I’m still working on the wallpaper 4 months later. A few strips at a time. I paid big time for those four days, at a time I should have been conserving energy for the start of the school year (I teach).

Luckily my husband is generally supportive. As I put it – he doesn’t get mad if I don’t mop the floor very regularly, and I don’t get mad when he tracks mud in. We tell our guests to keep their shoes on. Some of you are cringing, but the reality is that I already work a more than 40 hours per week job. And that is supporting us right now.

Thanks for a good article, Adrienne.

January 13, 2012 at 5:08 pm
(50) Jenny says:

Your post is very helpful but unfortunatly the stress is really bad for me. I work in a factory and frankly that is my biggest stressor. I am trying to find to different place of employment with no success yet. Having a support system has worked wonders for me though. My husband and in-laws have been great.

January 13, 2012 at 5:09 pm
(51) Pat says:

Gertie, I understand that you are worried, but only the person who has FM and that person’s physician can judge what is best for the person. If the physician is prescribing medications, they are meant to be used against the chronic pain the person with FM has. They may not be as effective as needed. If so, the person with FM may need to be in bed. There are many bed-bound people out there with illnesses which cause them not to be able to be up and around much, if at all. Remember that FM is a chronic pain condition. There is a video which might help you better understand what this person is going through and how the powers that be in our country and others have decided that people in pain are going to become addicts and should not receive pain treatment. You can find this video at http://www.theagitator.com/2011/12/26/siobhan-reynolds-rip/. Scroll all the way down to the bottom of the page to see the video. I hope it will help you understand that the person with FM is suffering from pain and is taking medications the doctor has prescribed to help with the pain, but they may not be doing enough to help. Sorry that no one answered your first post.
Pat

January 13, 2012 at 6:02 pm
(52) Eelia says:

I needed to read this because I have not overcome most of these…right now I am in a great place with my treatment! Done side is that I can’t find a job because my last flare up lasted over two years and I lost my job my home and my self confidence. I really find that if one thing is working out great then there is another that pops up and gives me a swift kick in the booty. I am on SSDI but can’t find a home because my income is so low. The one thing I maintain is positive self talk! I can do this, you are not the disease you are a beatiful person with talents.
After suffering for years and being mocked by the medical field I got the label Fibromyalgia/CFS that was 15 years ago. All I want is to be able to care fore myself and family…this leads to over doing it adding stress and making things worse.
When I am positive in my mind and keep the physical movment close to nothing I start to get my confidence back.

I just want a happy balance so I don’t feel less then everyone else. Funny thing happens when I get to that dark place…I meet a person that has it worse then me.

I am grateful for my understanding medical team, my loving family and for me an overcomer…no matter how many times I will over come one thing at a time.

January 13, 2012 at 10:21 pm
(53) Shelley says:

For those of you who are exhausted, infuriated and
downright angry about people calling you lazy, unmotivated
AND faking it, check out ButYouDontLookSick.com
(lower case letters will work).

I’ve been diagnosed with Fibromyalgia and CFS, PTSD,
Panic Disorder, Major Depressive Disorder (MDD),
and Asperger’s Disorder (and the list doesn’t stop
there).

I once had a man say to me, as I pulled into a handicapped
parking space at the Post Office, “You don’t LOOK
handicapped”! To which I replied (and I don’t
normally respond to such comments, but I’d HAD it!),
“Well, you don’t LOOK ignorant!”

It’s SO hard to deal with friends, medical providers, and
other people who have NO CLUE what they’re saying,
which causes even MORE pain, that I have become a
recluse due to these unfeeling comments. If it
weren’t for Adrienne and the rest of you who suffer
needlessly because of our illness(es), I wouldn’t be
able to bear it! I’m consistently sad, because I have
NO ONE to talk to about these issues, and I’ve been to
SO many therapists who don’t “get it” either, that
I’m very close to giving up. I would welcome ANY kind
of communication from anyone who is experiencing
this awful sense of hopelessness; this loneliness is
TOO hard, and this is not the way I want to live.
Mere survival is not enough; I need Friends badly, and I’ve
been completely alone, especially since my Beloved
Kitty died last March, just shy of his 17th birthday.
I miss him SO MUCH that, on top of the physical pain.
I suffer from on a daily basis, now I’m facing my
Life utterly alone and without any comfort or love.

(Continued on Pg. 2)

January 13, 2012 at 10:36 pm
(54) Shelley says:

(Continued from comment above)

I’m consistently sad, because I have NO ONE to talk to about these issues, and I’ve been to SO many therapists who don’t “get it” either, that I’m very close to giving up. I would welcome ANY kind of communication from anyone who is experiencing this awful sense of hopelessness; this loneliness is TOO hard, and this is not the way I want to live. Mere survival is not enough; I need Friends badly, and I’ve been completely alone, especially since my Beloved Kitty died last March, just shy of his 17th birthday. I miss him SO MUCH that, on top of the physical pain I suffer from on a daily basis, now I’m facing mymy Life utterly alone.

Shelley

P. S. I apologize for any misspellings or repetitions in
my writing. I can neither see what I’ve written on the
right-hand side of this page, nor could I tell, with
cutting and pasting, which parts I already wrote.

January 14, 2012 at 6:57 am
(55) A. M. Wood says:

Shelley,

Your post broke my heart. I can feel the pain in your words and how the isolation is suffocating.

I just read the above article and it spoke to every issue I struggle with daily. I am fortunate enough to have a husband who understands, this has been my lifeline at times. Even still, I too have felt consumed by the loneliness of illness. I am so sorry that you are alone and so tired of being your own, and it sounds like ONLY support.

Pets are such a comfort when humans fail us. I have been brought to tears by my cats (we have three) just instinct and ability to know when I need a snuggled. I lost one of my cats last year just after her 20th birthday. Please know that you in no way dishonor the place your kitty holds in your heart should you want another cat. Sometimes it helps just to have another breathing being in your space.

There are people who “get it”, please don’t give up on finding them. A chronic illness is life altering unto itself. A chronic, invisible one only rubs salt in an already raw and very tender wound. Although it is s daily struggle, please don’t give up on yourself either.

January 14, 2012 at 2:03 pm
(56) Stacy says:

I suffer from all of these! All I do is feel guilty because I cannot even work due to FM and spinal fusions. We even lost our house over it and I blame myself. Exercise is not an option with my back problems but these are great points made here int his article. Thanks

January 14, 2012 at 4:11 pm
(57) eaglehaslanded says:

Dear Brian (34)…….YES! I learned the hard way that there IS a link between Fibro./CFS & heart problems. I’ve had Fibro. for many years. But, not until 3 weeks ago, did I learn about the link. I was having problems with my heart racing & beating wildly. Found out I have developed Atrial Fibrillation. Went thru something called “cardioversion”, which is very uncomfortable & costly. Now, I not only have a multitude of meds. for Fibro. But, several more for this newest mess. :( & see one doctor right after the other. I am a 63 yr. old grandmother & feel like I’m 163!
To make matters more stressful, when the in-laws called to see how I was doing…(I was resting at home but having horrible panic attacks….one right after the other)….THEY LAUGHED & GIGGLED! YES! ………I finally spoke up & told them I did NOT find the humor in ANY of what I had to go thru & STILL AM! What’s wrong with people anyway??? PLease take care,Brian. You aren’t alone.
eaglehaslanded

January 14, 2012 at 4:29 pm
(58) Michele says:

Shelly, I’m so sorry for the isolation you are dealing with, and that your friends and family aren’t being compassionate or understanding.  You’rs so right about those feelings making things worse because it becomes a cycle.  The pain leads to isolation, the isolation leads to depression, and the depression leads to more pain.

I was wondering if you, by any chance, live in Northern California?  If so, one the BEST things I ever did was go through an intensive 8 week functional restoration program.  It’s at a chronic pain center, and you are with a very small (6) group of people that you end up bonding with on a deep level.  I have Reflex Sympathetic Dystrophy and Fibromyalgia, and due to the pain, I was in a wheelchair and spent all day in bed.  When I graduated I was out of the wheelchair.  It doesn’t make the pain go away, but it helps you to manage it.  
CONT.

January 14, 2012 at 4:48 pm
(59) Michele says:

Cont. Page 2:
The main reason I bring this program up is that I graduated about 6 years ago, but I am still VERY much connected to the pain center.  They have a support group every week that has about six people, and the art therapist that leads it starts other groups if needed due to numbers so she can keep the group small.  These people have become dear friends because WE ALL GET IT.  We have different conditions but are all suffering.

January 14, 2012 at 4:52 pm
(60) Michele says:

Cont. Page3:

I also go to an art studio once a week where my same friends from support group, along with a few others, get together and have fun while creating art to either express our emotions or just for fun. None of us had any art experience before this, but it doesn’t matter.  It’s just fun to get together.  Also, once going through the pain program, you get to use the equipment for free to keep up your exercise program. Movement is so important to keep our muscles from atrophying, etc., and just getting up to go to the facility may be my only movement depending on my pain levels for the day.
CONT.

January 14, 2012 at 4:57 pm
(61) Michele says:

Cont. Page 4:
Anyway, as I said earlier, this place saved my life in so many ways, ONE of them making new friends that truly understand what you’re going through because they are either going through it that moment or have gone through it in the past.  I went through three different pain programs that were all different, but this last one that I’m talking about was the best one for what you describe.  So, if you live in Northern California, the place is called The Bay Area Pain and Wellness Center in Los Gatos, California.  People come from all over the place to go through this program, and they stay at a hotel nearby, which, from what I hear since I didn’t stay in the hotel, was a lot of fun, too.  If you are on Worker’s Compensation, like I am, then the insurance pays for the hotel and transportation to and from the center each day for the 8 weeks.

January 14, 2012 at 5:01 pm
(62) Michele says:

Cont. Page 5–Final Page:

If you don’t live close enough, then I would urge you to research your area for a similar program.  You won’t regret it.  I’ve watched HUNDREDS of people graduate from the program, so many of whom were suicidal beforehand, as I was, due to the pain and hopelessness, and not one have I seen not change their life for the better.  

I will keep you in my prayers!  I’m glad that you have found support through this site, too!  Hugs to you!!

January 14, 2012 at 5:29 pm
(63) Mark says:

Wow. I’ve read most of the comments here and I have to say that I think that I can identify with nearly every one of them. But the main one is feeling worthless and alone – like no one ‘gets it’. Men find their identity in what they do (I know it’s wrong but it’s the way we are wired). Ask any man what he does, and his reply will start out ‘I’m a ……..’. Consequently, when we’re sidelined and no longer able to work like we have in the past (I used to average 50-70hrs a week in facilities mgmt). The depression kicks in and we feel like we’ve been stripped of everything we ever were. I know women are affected in their own way as well, but I can only relate to a guy’s point of view because that’s what I know. I’m also a veteran and after 5 yrs of being treated for “depression caused by obesity and mild arthritis” Im greatful to say that my VA doc finally tested me for everything under the sun and settled on FMS. I’d never heard of it(2004 or so). So began the research. And the first articles I read confirmed my fears. I’d been thrown into a bucket because something really bad was wrong with me and they couldn’t find it. And, most of the articles said it was a woman’s disease. Since I’m not a woman, I was really put off by the diagnosis. I was sure the doctor was a quack. But, as years went by, I began to see that the doctor was right. It took the VA until 2010 to send me to a

January 14, 2012 at 5:30 pm
(64) Mark says:

(cont)……Rheumatologist (for gout) who said I didn’t have gout, but I most definitely had FMS. I also have asthma (since childhood), morbid obesity (working on this one), sleep apnea, hypertension, hyperlipidemia, fatty liver, diabetes, chronic anemia, major depressive disorder, CFS, IBS, severe osteoarthritis, gerd, etc. I can’t work more than one or two days in a 7 – 10 day period because I have to rest up because I’m so friggin exhausted and hurting. Then, I have a hard time remembering anything, mix up my words when I’m talking, etc. And, I feel guilty as hell for sleeping in or falling out on the couch right after breakfast, or for having to hire help to take care of my mother when I should be able to do it all myself, etc. Then there’s the whole “am I really suicidal when I wanna just quit? thing and the guilt from that.

Thanks for the 10 things list Adrienne. Thanks for all the comments. And, thanks for letting me ‘vent’. This seemed like a ‘safe place’ for FMS/CFS sufferers to ‘let it go’. I save all the emails from About Fibro and I will keep this one.

January 14, 2012 at 7:41 pm
(65) LEE says:

A friend said to me recently, “your problem? is you are too high-functioning…you look fantastic.”
My response, “mind over matter.” That is my response on a good day. On a bad day, I close the door.

January 15, 2012 at 1:48 am
(66) Lois says:

To Caly: I’m so sorry to hear you say that your doctor’s and other people of inportance in your country are not educated about Fibromyalgia. I’m not sure that most people in general know anything about this illness. I am fortunate to have a wonderful doctor who takes my symptoms quite seriously, and has done everything he can to help me, and continues to do so. Still, the symptoms seem to worsen with age. I have been dealing with this illness for at least 20 years to some degree or other. I didn’t know what it was for a long time. I spend a lot of time in bed because there is no energy to do anything else. I run my home and family as best I can, but not to the degree that I would like to. I don’t feel that anyone really understands me, and where I am with this illness. Even my husband sometimes stands at the foot of my bed and asks what’s wrong with me this time. I have quit trying to please anyone else but me. That has taken a great load off my shoulders. If I hurt, especially with this winter weather, I snuggle under my cover’s and unplug the phone, and hope no body rings my door bell, because, I am not going to answer it. I’ve always been a hard worker, taking care of my home, as well as a handicapped son with cerebral palsy. Since he is not in a wheelchair, I can make sure his needs are taken care of, and then I let it go for anyone else. I ask nothing from other’s, except my daughter who helps me get to my heart specialist for testing and routine visits. I so appreciate her. I don’t like to ask for help from anyone, but I am finally learning how to listen to my body and take better care of me. I’m here if you want to talk. Lois

January 16, 2012 at 8:01 pm
(67) Deb D says:

Thanks you for a terrific article.

I’ve struggled with fibro for almost 20 years (I’m 59). It’s been a challenge raising 2 children, building/running a career consulting business simultaneously (from home office, fortunately), and being a co-breadwinner with a husband who is an extreme commuter (4-hour RT to work every day) and has only a few hours home every day except for weekends.

For me, the worst is not the pain, which I am fortunate is low-to mid-level chronic, but mostly not horrible. It’s the fibro fog and malaise that overtakes me and makes it so difficult to plan a day, work with clients, write for my job, follow through on deadlines and promises (if I remember them). Most days I feel disoriented to some degree and have to fight through it to get anything done.

It’s odd…I can focus on one project at a time. But anymore than that and I’m spacey and desperately trying to get tit together. That’s what I feel guilty/angry/scared about. I LOVE my clients, they energize me, yet I dread getting a new one because it feels overwhelming.

I cut back on business and family commitments (some of my nine siblings don’t understand that, which hurts), I try and care for myself, but I’ve just lost the will to push past this. It feels like a battle I can’t win. I think after all these years I still struggle with denial that I have it and guilt that I do have it.

I do enjoy my life, and I feel VERY grateful it isn’t worse, but I am often hard-pressed to feel joyful. Your article is a strong reminder (and a comfort) that I am not alone and that this is something I can’t help. Thank you.

Kudos and much love to all the commenters who bravely manage every day, while physically, mentally, and emotionally hurting an ways that only fellow fibro folks can possibly understand.

January 19, 2012 at 4:41 am
(68) Catie says:

Im 22 and diagnosed a year ago and battled through doctor after doctor for 4 years prior to figure out what was wrong with me, I finally know and my dad still thinks I can do things that I physically can’t do apparently my dr says I have a rare case for someone my age but it doe happen I’ve been called lazy or told I’m faking it for years , I’ve lost 3 jobs in 2 years which now I am what the govt calls disabled and can’t physically work nor am I allowed to .. I know that I can’t give up because I’m to young to let this take over my life but it’s hard. I have ever single symptom of fm from skin reactions to gluten allergy to cant move most of the day. Sorry for ranting I don’t et to talk to people who know what I’m going through often. My family doesn’t get it they think I’ve given up but I haven’t I just have trouble facing it sometimes.. I live in new York and the weather has been effecting me bad to the point of me not being able to keep plans or wake up with. A smile and I’m sick of people looking at me like I have a deadly disease with that sympathy in their eyeS I’m not dying I just have fm.. Once again thanks for letting me rant dr took me off my 5 th med I. 6 months due to no results, just stressed

January 19, 2012 at 2:15 pm
(69) Sylvia says:

Hello everyone,
This is my first time researching Fibro….and I am so thankful that I found this website / forums. I am in the same boat and am struggling also. At least my therapist is understands the disease. I am also “alone” , because friends and family just don’t understand. I will check back later, someone is at the door and I am in so much pain that it will take me a while to get there, ( lol, they will probably leave by that time)

January 20, 2012 at 5:03 pm
(70) Sharron says:

I have been ill 18 years and have had to deal with every # listed. I am going to post this, highlighting for my sick peeps, to not give up so easily on trying new things…sometimes it takes a couple of weeks to adjust to a new medicine…we are “too quick to know” because we do know our bodies so well…but, we DON’T know everything and what do we have to lose trying something new and you won’t know if your body will adjust if you don’t give it the time!!

January 23, 2012 at 9:48 pm
(71) Shelley says:

To Kathy, Comment #4: Hello to a
Sister Buddhist & FS/CFS Sufferer!
First of all, you’re not doing ANYthing wrong! You are
just hearing the ignorance that is running
rampant, especially in a small, conservative town,
one that sounds exactly as the town where I “live”
(I’m really only existing here, hence the quotation
marks).
I spent 16 years to save up enough money to move to
this lovely and bucolic town. I’ve been here almost
5 years now and, despite the rugged beauty that
surrounds this area it is, alas, populated by more of a
slovenly and alcoholic bunch! So, I’m now in the process of
making another major life change, to move once
MORE to the place I’ll finally be able to call
HOME. This time I’ve spent a year doing my
Homework, researching EVERYTHING, from the
quality of medical care (especially in the field of
Fibro/CFS), to the proximity of a Buddhist
Temple.
So, take Heart, my Sister! Where there’s Hope,
there’s Home! I know the isolation is a killer, and as
much as I love my solitude, I had no CLUE that I
would be so ostracized to the point where hardly a
Soul will talk to me. But, I’m DONE with all the
naysayers, the ill-informed and the uneducated!
AND, the downright MEAN-spirited people! There’s
a trade-off for every decision we make, and MY
decision to move to this town in the first place was
ill-conceived and not well thought out.
(Continued on Page 2; apparently I’ve been too
verbose for, try as I might to pare down my writing,
there are still too many words!)

January 23, 2012 at 9:53 pm
(72) Shelley says:

(Page 2, continued)
By the way, I ordered “How to Be Sick” as soon as I
read your comment and clicked on the link you
provided! Thank you SO MUCH for sharing that
invaluable information! I can’t WAIT to start reading it!
In the meantime, if you haven’t already, pick up a
copy of “My Spiritual Journey” by His Holiness the Dalai Lama. I’ve only had it for two months, and
I’ve read it five times already! He has been SUCH a Tremendous mentor to me, and his words, HIS Spiritual Journey, have had a great influence on how I shall move forward with mine.
Reading it moves me to tears, both in Joy and in
Sorrow, because for all the responsibility he has carried on his shoulders since such a tender age,
he is extraordinary in his ordinariness, and his
Humility and Equanimity provide me Solace in a
World filled with hubris and chaos.
Thank you for showing me yet another window into a Fellow Traveler’s Journey. You have made a difference in this humble, and often frightened, Heart of mine.
Namaste, and Go in Peace (instead of pieces), and
I will do my BEST to do the same.

With Love,
Shelley

^j^j^j^j^j^j^j^j^j^j^j^j^j^j^j^

January 24, 2012 at 5:18 am
(73) lisa burke says:

I do all of the above. I wad told by my Pulmonary that I really need to quit working and take care if myself because my frequent flares ate causing damage, I feel guilty.

January 30, 2012 at 10:08 am
(74) JL says:

Hi,

I can relate to all of this as I have had R/A. FM, O/A, Osteo and CT for about 33 years now. In the last year I have finally started to put myself first for sheer survival and it has made such a difference! Wish that I had done it sooner….now waiting to get back on track and hopefully a bit more pain free………yea!

April 7, 2012 at 11:05 pm
(75) rosemary harwood says:

Not only to have the misery of FM in my life, I have now been put on oxygen 24/7. I am wondering if the two are connected in some way. To add to this, I have a white, VERY long haired Perian cat who sheds fur and dander which I KNOW cannot be good for my lungs. I am 73 years old. Anyone got any comments PLEASE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

May 28, 2012 at 1:03 pm
(76) Jan Becker says:

Hey Pamela that wrote back in January!

July 6, 2012 at 6:12 pm
(77) chris says:

I have stopped talking to anyone about what is going on because I really believe no one cares. Neither my husband nor my daughter are supportive in any way. They think I look OK, so that means I am fine. I used to be so active and now I barely move around. I keep asking myself why I am being punished, is this my life sentence, will it ever go away. Why can’t I just sleep? I never lie down during the day even though I am exhausted because I CANNOT sleep. I take a very low dose of sleeping pill each night but I hate taking any medication and I am very, very sensitive to everything. I am not working and we could use the extra income but I can’t remember things I need to know and everyone thinks I am just being lazy.

August 5, 2012 at 11:24 pm
(78) nunnelley says:

I am 63 and have had fibro for over 20 years. I had to quit my job. I use to sit in my car and cry before going to work. The pain just got to be too much. Then my daughter got pregnant with our first grandchild. A 10 lb adorable boy. She and her husband worked full time. He would be out of town frequently. My husband and I jumped on the “will you watch him for 10 hrs a day for 5 days a wk.” We were so in love with our grandson that even with my husband working 6 nights a week himself didnt matter. After 2 1/2 yrs I had a tired husband, myself two herniated disks and my nerves were a mess. She finally put him in daycare. We came out of it as unreliable grandparents who could not be counted on. He is 11 now and we have two other grandsons and another on the way. No one will ever know the true sacrifice that we made for that little baby. He will never know because of the parents insensitivity. We rarely see them now because they only give time to those who can watch the kids. When did being a grandparent become a babysitter and not someone you go to as a family to visit. I hate fibro. It has ruined my life and shortened it. And to think there are still so many in the health field who refuse to believe that it is a real illness. Judy

August 24, 2012 at 8:54 pm
(79) Ali xx says:

I want to agree with what Ashley said. “I would be so upset with my children if they treated people the way I’ve been treated and the way I’ve treated myself” How you would treat someone with this disorder if you had as much knowledge as you do and understood how it feels? That is how you have to treat yourself. Our emotions and the way we used to be dictate our expectations of ourselves. It is when you accept and see the new person for who they are and find the good things about them, that you can actually look forward to remission and more happiness in life. I took 3 years with the help of a psych but I had basically no support from friends or family. I would encourage everyone (especially newbies) to believe that life can get better.I worked hard on my self respect and my psyc. always reminded me of the small successes I made until I started making bigger ones, I learnt to believe in myself again. I went back to work part time, 8 hours a week over 3 days, teaching computers to seniors. It was the most fulfilling job I have ever had and which I would not have been able to do prior to fibro. I wouldnt have had the patience. I find the silver linings in my life and make the most of them. If you cant look after yourself emotionally with self respect and love, or put yourself first, seek some help to do it. It is as powerful as any meds and can help you find the strength to keep fighting for yourself with all that you have to deal with. With meds and love for myself I have improved 70% physically and 85% emotionally from my lowest which was suicidal. I will keep trying to improve more and have a lot to live for now. I have psoriatic arthritis which may very likely have me crippled at a much younger age than I would have ever dreamt but I have so much more control of my life now and will worry about it then. I often doubted I could do this, but now I am! I wish you all strength. I think love is the greatest power on earth, give it to yourself! Ali xx

January 10, 2013 at 11:23 am
(80) Pam says:

I do all of this to myself….EVERYDAY! I was so excited to read the article. Now my biggest hurdle is “how do I LEARN to put this more positive mindset into reality for myself. I want so bad to accept the FM. I want to not even care about what others may think or believe. Once I get over this GIGANTIC psychological issue(s) I know that I’ll be a lot better off. Please say a prayer for me.

January 24, 2013 at 7:04 pm
(81) megavern says:

your all such nice people

February 15, 2013 at 7:40 pm
(82) Shannon says:

Being forced to change your lifestyle due to chronic pain and illness is a real challenge, no doubt about it. I’m still having difficulty pacing myself. At least I’ve forgiven myself for being sick, though I still have pity party days ridden with the sense of worthlessness.

The BEST thing that came out of being diagnosed with Fibro is the huge welcoming community of people who truly understand what I’m going through. I highly recommend folks learn to use Twitter to connect with other #spoonies and use regular hashtags like #Fibro , #Painsomnia, #ChronicPain and my personal coined words #Confuseless and #Napture. You will always find someone up and online to talk to regardless of the time of night/day it is.

I encourage everyone to connect with me via my site at http://www.livingwithfibromyalgia.ca or @LDYLARKE. We’re in this together and you are never, ever alone.

Light and Love <3
Shannon

March 9, 2013 at 6:06 am
(83) Maria says:

I have a friend who has always been very good to me despite the fact that she is stuck in “New Age” thinking about what must be the right self-care for CFIDS. Lately we had a phone converstion in which I could feel her criticism of my choices, my belief that I cannot make myself well, and that the best thing I can do for myself right now is learning to accept and cope (a la Toni Bernhard). She wrote in an e-mail, “I think I do have a certain way of wanting what I feel is best for others and then being very upset when they aren’t expanding to conform to my notion of their own power of self-healing…..I am having trouble now “acknowledging”that the choices you have made are right for you since I really don’t believe that’s the case.” There was alot more. I feel I may lose another friend because I can’t make myself well according to her beliefs. My # of friends is becoming very small..

May 24, 2013 at 5:29 am
(84) Shelby says:

My painful journey started while I was still going to college full time. It started out as lower back pain for which I had seen a massage therapist, chiropractor, and my GP. Nothing ever helped, not even the pain meds the GP was prescribing me. It got more and more difficult to even just go to school. I’d always been a hard-working and attentive student, so for me to change so drastically was hard on my mindset. I eventually stopped going for my Interior Design degree and decided I would take a degree completion program through DeVry University (which is a total joke, even though I did finally finish I did not retain any information mostly because it is hard to even concentrate when you are experiencing the degree of pain us with FMS deal with).

May 24, 2013 at 5:29 am
(85) Shelby says:

Everyone keeps telling me I need to exercise more, but what they don’t realize is that I not only have FMS, but failed spinal fusion as well and I have been relatively bed-ridden for the last 3 or 4 years. I get up to go to the bathroom or sit in a chair for a little while to try and get comfortable, but I spend most of my time in my room. I don’t like to travel too far from home or for more than one or two nights. I used to be so active in competitive swimming as well as water polo and now I’m lucky if I get around to shaving my legs once every month or two and a shower once or twice a week. It’s not that I enjoy feeling disgusting, I just hurt so bad and cannot muster the energy needed to do even just minor things such as showering. Gertie said she has been concerned about the health issues that bed-ridden FMS may suffer and trust me, I worry about my own health besides the pain. I get frequent headaches and if I work myself too much I end up getting very sick (I mean throwing up for 12 hours straight sick!) I am LITERALLY sick and tired of it all. Not to mention I am going through a horrible breakup in which the emotional pain manifests itself as physical pain. I need to focus on my well-being, which is very difficult right now. I have this pain in my stomach from worry, anxiety, stress, and depression. I wish God would take it all away!

May 31, 2013 at 4:04 pm
(86) sgoold says:

Hi I’m so sorry to hear how bad you are it really sounds awful. I’m the same well I have hip dysplasia, joint hypermobility as well as the fibromyalgia. I don’t exercise except for walking slowly to School in am and pm. I use a walking stick which helps a great deal and I always wear a heat pad on my lower and upper back depending which is worse. I also take tramadol 4 times daily which helps take edge of the pain but it also allows me to get Sonera chores done like cook dinner. Which I couldn’t do otherwise.
Hope this helps!!
X

June 27, 2013 at 7:24 pm
(87) Bell says:

great issues altogether, you simply gained a brand new reader.
What may you suggest in regards to your post
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June 28, 2013 at 4:18 am
(88) soccer speed training says:

Thanks for finally talking about > 10 Things to STOP Doing to Yourself With Fibromyalgia & Chronic Fatigue Syndrome < Liked it!

July 16, 2013 at 3:15 pm
(89) ally says:

I was recently diagnosed with this condition and, to be honest, thought it was nonsense. That is until I have been signef off work after doing quite a few work shifts ending with 15 hour shift ending at 10.30pm, 45 min drive home, unwinding then up again at 5 am for another shorter shift that day. When I got home I literally collasped in a heap and slept and slept! I still felt rubbish the following day and was sent home from work. I’m feeling better but still not right. I have realised that I need to slow down a bit and to believe in this condition. My doctor has signed me off work for a week and I’m hoping that complete rest ( incl exercise) will help.

July 27, 2013 at 4:30 pm
(90) Awhina says:

Helle
o, I am Awhina. I have had FMS for years. I am now 54ys old. I have a really bad flare up at the moment. I have arthritis in the neck and lower lumber, and hands. Constant pain. I also fractured my right leg from a bad fall last Dec and limp. I take Codene and paracetomol, but that doesn’t really help sometimes, the pain takes over. But, I have fantastic support because I told family etc about my illness. Trying to slow down is hard, but I will get there.

November 15, 2013 at 5:59 pm
(91) carol says:

As I have written before that after having fibro, benign hypermobility syndrome, chronic fatigue and a couple other painful conditions for many years I’ve learned how to live again. By trial and error I’m doing a lot better now but its taken quite a while to figure it out. What I’ve done is I’ve eliminated anything and everything that flares up my symptoms. I’m starting to feel a little depressed because of one issue and that’s the verbal abuse and negativity I’ve started getting from my doctor. I’ve been with her for 5 years now and the medication I’m on has helped but she recently attended a conference and she is now afraid to prescribe any pain medications and she takes her frustration out on me. Like recently she prescribed me some high blood pressure med and when I went to the pharmacy they didn’t have the script so they called her office but the pharmacy didn’t get any response so then I called the office and again no response so I had an appt on 11/13 and I told her about the situation and her response was I should have gone to the office which I didn’t do and here comes the verbal abuse: her comment was that if it was my pain meds I needed I would be in the office immediately which is not true. She also called me an overweight middle aged women. I’m. Fed up with that verbal abuse and I want to change doctors but if I go to a new doctor he/she is not going to prescribe me the meds I’m on but I can’t take the abuse any longer so I’m going to speak up about it and even if I can’t get my meds from a new doctor I’m going to have to sacrifice and start over again. There is no reason for her to be treating me like she has been and I don’t need to take it. She is just creating too much negativity and stress and that has affected me to the point that I’ve had bad headaches my pain is worse then its been therefore I haven’t even been able to go work out in the last couple weeks.

December 19, 2013 at 5:46 pm
(92) Mary says:

My doctor did not listen to me at all he made me feel stupid and inferior. His advice was to spend less time thinking about myself and to watch coronation street on tv and spend more time with my family! This advice came from a rheumatology professor in the UK what a joke!!

February 20, 2014 at 11:16 pm
(93) Brenda says:

It’s all very well to say “pace yourself,” but life doesn’t care about what pace serves me. As I try not to overdo, the responsibilities in my life pile up, and then I must overdo to get done. No one to whom you owe a bill cares that your staying up a little late and getting the check written and into the envelope with the right receipt and the transaction accurately recorded in your checkbook and the stamp on the envelope and the envelope in the box means that you’ve officially overdone and will be in bed. No one cares. With the deficit of assistance that most of us have, as time passes and we become more isolated, it is hard not to overdo and I don’t need a list making me feel guitly because my disease doesn’t let me achieve the ten points.

As for “why?” I think we need to start asking loudly, “Why do we have no ribbons? No month drenched with advertisements and fund-raising products? No organization driving money-raising for research?” No one among the healthy cares enough to help us help ourselves?

February 28, 2014 at 1:10 pm
(94) Dzie_ Kobiet says:

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March 25, 2014 at 7:08 pm
(95) Debra says:

I have been diagnosed with fibro and CFS over 10 years ago.the older I get the harder this is to deal with. All the Dr’s do is look for more ways to spend my money on what can be wrong to cause you to be this way blood work xrays anything they can. I personally feel overwhelmed with life. I have to work I have no one to support me, My fiance is out of work and he is sick but he has a support system his family and they help him out. I just feel like jumping off the bridge. Day in and day out work, home, sleep. No quality of life, cant sleep good. and can’t catch a break. I would like to be better. feel alive feel like if I want to sit and rest I can not have to go out the door to go to work to pay all the bills. I have to carry the weight for everyone when will it be my turn to get well? i KNOW i AM RANTING BUT I JUST NEED TO REST. :(

April 15, 2014 at 1:56 pm
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