Things to Avoid When You Have Fibromyalgia or Chronic Fatigue Syndrome
What do fibromyalgia (FMS) and chronic fatigue syndrome (CFS or ME/CFS) keep you from doing?
As hard as it is to adjust to limitations around the house and at work, we don't have much choice but to adapt somewhat quickly. When it comes to other things, though - the things we do less often - I'm finding the learning curve to be much more steep. Now and then, I run across one more thing I won't be doing anymore, or that I'll at least think long and hard about doing. Here's my list of things to avoid:
- Amusement park rides
- Speed boats, especially on rough water
- 4-Wheeling
- Snowmobiling
- Paintball
- Tattoos
- Air shows
Some of those were pretty much a no-brainer once I thought about them (paintball, snowmobiling). Others, though, I've learned the hard way - including the last item on the list. (I'd forgotten how when those powerful jets blow by, you can feel massive sound waves vibrate through your body. Ouch!)
I've paid the physical toll for amusement park rides and speed boats as well, and I've learned that anything that can repeatedly jar my body is just a bad idea. Even riding in a car on rough roads can set off pains.
What kinds of activities have you learned about the hard way? What have you decided it's just wiser to avoid? Share your comments here or in About.com's Fibromyalgia & Chronic Fatigue Syndrome forum!
Suggested Reading:
- Living with Fibromyalgia & Chronic Fatigue Syndrome
- Fibromyalgia & Clothing - How to Dress for Less Pain
- Make Exercise Work for You, Not Against You!
Comments
The first thing I discovered that was a no-no when I got sick in 1984 was an active social life. I had been a party girl – going out on Friday nights dancing. I was 44 and felt like 24. So I enjoyed life a lot. Suddenly, literally overnight, I felt 84.
When taking a shower requires 60 minutes of rest before you can complete dressing and putting your hair up in rollers, you know that your life is never going to be the same on so many levels.
If I compiled a list of things I shouldn’t do, I’d be here all night typing. But I think what I’ve described above can give anyone a good idea of just how limiting this disorder can be to most of us.
Nancy (GrannyCFS)
The only thing on my no-no list is feeling guilty about what I can no longer do. If I have to sleep til noon, then I wake up at noon feeling good about myself! That was a big hurdle to get over, but when I finally did, wow! What relief!
That said, I do anything now that I used to do, except in slow easy steps. It may take a week of so to recover from a hike, but I don’t stop hiking when I feel like doing it. It’s pacing that works for me. Right now I’m resting between refinishing a file cabinet out on my front porch. I do one drawer, come in and lie down, get up in a while and do another drawer. When it’s done, I’ll crash for a week or two, but the project will be done and beautiful. (Pre FMS/CFS I could have finished the whole thing in an afternoon.)
Oh yes, I forgot the other big no-no I’ve got. I don’t listen to doctors tell me to exercise! I don’t take exercise stress tests. I don’t do any of that stuff! I don’t care what they tell me, they do not know my body, I do.
Alice
Amusement parks are now a big no-no for me…I get so upset about not being able to go on roller coasters and other bouncy or rough rides that it is not worth it. Especially when my husband and daughter go on the coasters and RAVE about what a great ride they just had.
) , but still…not to mention, what with all the meds even having a casual drink with friends needs to be planned well in advance.
No more social life either…cannot stay up and party all night long. Of course, that may be because I am 56
Sleep apnea necessitates me taking my CPAP anywhere we are likely to stay overnight – no more spontaneous sleep-overs at friends.
The limitation that really hurts the most is my inability to garden and do the horticultural work I want to do. I went to school for 5 years (in my 40’s!) to learn what I needed to work in greenhouses and now cannot do that work.
Long road trips or flights need to be well planned so I can get up and move around a bit so I don’t stiffen up too badly. And every vacation needs to have a substantial bit of “down time” included every day so I don’t wind up in more pain thyan usual. (No more long days at Disney!)
Wendy
PS I can’t use perfume any more, because I have multiple chemical sensitivity. I really enjoyed trying new fragrances and had a couple of favorites.
After a dx of fibro, I had an injury that left me with RSD…so i’ve really had a big change in life. With the fibro alone, I have to agree with Alice…pacing. Do a little, rest a little. I just can’t allow this illness to control my whole life by lying down and rolling over to it. I won’t. Even if I hurt the next day or three days, I feel that sense of purpose and self-worth when I accomplish something.
One thing that I always try to avoid is going anywhere where I won’t be able to go to the bathroom whenever I need to. Also, crowds of any kind aren’t a good idea either. So you won’t find me at any huge outdoor concerts or anything like that.
It has been the hardest thing to admit I can’t do what I was used to doing. I am 54, and feel much older many days. How did this happen!???
I also loved to garden, work on many projects inside and outside of the home. I can’t work anymore, even after nursing and teaching for 36 years, I miss it dreadfully.
Kneeling, housework, any travel whatso ever. I can’t drive myself more than a short distance from home.
This condition is very limiting in many ways.
Any open-ended situation in which I can’t drive away or walk home on my own. So I never accept rides any place any more to family reunions, spending a day shopping, going places with a group. If I have my car I can leave when I need to go.
Dancing, performing, cooking, helping out with events, any kind of commitment that requires a regular schedule or has a deadline, and more.
And let’s not forget the things that I will never be able to start to do now: hiking, owning a horse, having a rescue or visitor dog, singing with a band, painting or other art that requires complicated set up, gardening, restoring a house, road trips, well, the list is long of things that I hoped someday to do, but not never will.
Really, life is hardly worth living.
Wow!!! This really strikes a cord with me because it seems I grieve more & more over what I cannot do anymore esp. during the sunny months while others are doing it all: boating, hiking, gardening etc. I agree with y’all, sisters!(& the brothers out there, too). I am still stubborn enuff to camp & fish 2-5 times/
year in my VW camper even so I pay for it afterwards.
At 56 I feel a wreck,like my quality of life is nothing & I’m way too old before my time. And soon the Oregon rains & clouds will be here & so will S.A.D symptoms.
And I hate it when friends & family look at me/us like we’re fakers or whimps or losers ‘cuz we do bow-out now & again – dang – HELP!!
I avoid places where which require me to stand for any length of time. Places with long lines (like amusement parks) are out. Concerts in “mosh pit” type venues are out too. I still go to concerts, but only in venues which will sell me a ticket for a specific numbered seat. I keep a small folding stool with a backrest in my car and take it everywhere I go — parties, picnics, choir rehearsals — just to guarantee that I will have a chair to sit in. I rarely venture into shopping malls. I know in advance that a trip to Costco will wipe me out for the rest of the day, and plan accordingly. Luckily my husband has always been a bit of a homebody, so he does not mind skipping festivals, street fairs and other events that involve a lot of standing.
I am relative novice at managing fibro…only had ‘it’ for about 4 months…but I am absolutely (ABSOLUTELY!), NOT going to let it ruin my life. I am more ‘at home’ than I ever used to be..and even work is a no no at present. So far though I do agree…crowds, loud noise…and the perfume thing…are all upsetting to my system…in these early days. I sure could live without it!!..keep your chins up girls and boys.
A HUGE Thank You to ALL of you, but especially to Nancy Henson and Alice Campbell – your comments & insights put much of my struggled thinking into proper perspective, and I actually felt the release of the tension in my body. Nancy, your comments about the shower & rest of getting ready really clarified the situation I’ve been alternately wondering about to agonizing over: why aren’t so many things “worth it” to me anymore. Your description is exactly what I deal with, but it was SO much easier to REALIZE the gravity when I heard you describing it.
Alice, your acceptance and self-allowance is an inspiration! I have only, in the last week or so, really admitted to myself that “what is, is”. Of course, since doing that, I have regained a large measure of balance and therefore able to be more pro-active, in both “life-management” and attitude /emotions. Thank you for the sweet, short, simple Truth spoken so eloquently!
So, much success to each & all of you. . . success being whatever your definition (moment by moment) means to you!
Thank you all!
To your health!
Anna Q-S,
My heart feels for you and your griefing each thing you can’t do now. Some good advice I received years ago (I have had FMS for 22 “yrs.) was to make myself grief over the person I used to be. She’s gone never to return and I was entitled to grief her “death”. In order to celebrate the new self I am now and make her the best person she can be – not day by day but minute by minute. I still grief over the old Connie at times cuz I miss her. But the new Connie is a much more caring and considerate person than the old due to living with FMS.
Make it a smiling day!
Forgot to say what I avoid. Imagine that forgetting LOL
)
I have learned to avoid stress and all drama.
Also avoid those that bring stress and drama with them.
Causes my body to tense and we all know tense body brings on a flare up.
I work to make it a smiling day even if I don’t feel like. It may be the end of the day before I actually even want to smile but at least I brought smiles to others. Smiles are contagious; you give one away and you get one back in return.
So make it a smiling day!
IN RESPONSE TO NANCY HENSON…I HAVE TO TAKE MY SHOWER AT NIGHT AND SHAVE MY LEGS ON A SEPARATE DAY, BUT ONLY SITTING IN A BATHTUB, AND CANT DO BOTH ON THE SAME DAY,,BLOW DRYING MY HAIR IS THE WORST…COMPLETELY ZAPS ME..AND STARTS PAIN IN BACK AND SHOULDERS..I AM 60 AND HAVE HAD THIS(FMS/CFS) OVER 25 YEARS..I STILL THINK ABOUT HOW I USED TO BE..TYPE A PERSONALITY,HIGH ENERGY ..MISS MY OLD SELF BUT EVERY EXPERIENCE HAS MADE ME MORE HUMBLE AND HAS OPENED UP A DIFFERENT TYPE OF LIFESTYLE…I STILL TRY TO PUSH MYSELF AND JUST PAY FOR IT LATER..BEST OF LUCK TO ALL …3THREEMS
I am 65 years old & have had pain for 44 years. My FM DX came 21 years ago. The most important thing I have learned is to listen to my body & go from there. There are still times when I resist accepting the fact that I have a chronic illness. I do stay away from people who are judgemental & offer unsolicited advice. I can be hard enough on myself without any help. It is what it is! I am with you, all my friends out there as we fight the same battle. Take care.
I’ve been in a really tough spot lately, I HAD had the fibro pretty well controlled with attitude, yoga, and meds, and all of a sudden BAM! All I want to do is curl up in a fetal position again. My doctor says I’m fine, I think grilling over a low fire is too good for him. I’m not a fun person to be around right now, and dang, I sure miss me…so instead of being off on the motorcycle for the weekend, I’m home in my jammies. sleeping. again. So, i’m gonna try a new holistic MD next week. back to the intensly positive attitude. Something’s gotta help. I’m sick of wallowing in my own pity party. Time to unload the top rack of the dishwasher, rest 15 minutes, and then do the rest. At least I’m in one piece. The pieces don’t like me at all today, but it could be worse. Good luck to us all–it so helps to find one little positive thing in every situation. Reading about all of you reminds me that I am not alone. If you believe, let’s all say a prayer for each other. Thanks for sharing your stories.
Kathryn, I have been in your place many times & can feel your pain. It is devastating, like a rug has been pulled out from under you. It’s like fibro waits to pounce just when we think things are going okay. I’d be happy to help you roast that Dr. Good luck with your new MD. We are not alone. I miss “Me” too. I will say a prayer for you.
I have so many no no activities it would be hard to list them all…I would probably forget a few.
At the top of the list are:
1. Avoiding bright light (especially fluorescent) and loud noise like the plague. There is almost nowhere you can go that doesn’t involve fluorescent lights. I live in California’s Central Valley…sun, hot and sun.
2. Working on anything too long. A really terrific day would be two hours. Less than an hour is the norm.
3. Being on my feet too long. I had to give up hiking years ago.
4. Emotional stress. This is one of the most difficult. Since my daughter seems incapable of understanding my problems, it means I have no contact with my grandchildren.
5. Travel. Air travel wipes me out due to the hassle airports have become and the cramped space in aircraft. Not to mention the expense!!! Adds to number 4 since my daughter and grandchildren are 1400 miles away.
6. Altitude changes or barometer drops. The barometer drops at some point almost daily.
7. My husband when he can’t admit he is wrong or won’t shut up about how right he is. I think he may actually be learning now and then that it is not worth the whirlwind of anger I turn into when he pushes it too far. It’s hard to ignore the aggravations when you are trapped together all the time.
8. Lack of sleep. A chronic problem that I haven’t solved.
I once had a consistently clean house and less weedy garden beds. I just try not to stress out over the mess.
Like another contributor, I have too many days that I wonder why I bother to wake up every morning. I’ve found that the medications that are supposed to “help” actually have made things worse.
I pretty much do better if I just pace myself and avoid as many of the 8 items above as possible. I do a lot of reading to keep from dwelling on what I’ve lost.
I’m glad everyone shared…it helped.
Lois
Wow! I have all of your comments and it was almost like reading my diary. Where do I begin?
Well, I am also a diabetic and I am amazed at how high my sugar is after taking a shower and drying off. You would think I had just eaten a dozen chocolate bars. Then, of course, there is the pain associated with that as well. I would dearly love to sink into a bathtub and just soak. But due to the fact that my arms and shoulders are just about useless, I can’t even lift myself up out of the tub. I shower sitting on a plastic stool. Further, I agree with the blow-drying of the hair. What PAIN….. as a result of all of the above, going out socially is almost a thing of the past …. it really has to be worth it.
I love to knit and crochet. With the FM, it takes me so long to finish a project, what with the stopping and starting, sometimes I just want to put it down and cry my eyes out. But with two grandbabies and another on the way, grandma wants to knit.
Reading, which has always been a passion now depends on the weight of the book.
Travelling any length of time is sheer horror, so that is out completely.
Standing for more that 2 or 3 minutes is out therefore dusting, vacuuming, baking …. is a no-no. When my darling cockapoo, Cole, needs go pay a visit outside (I have to go down a flight of stairs to get to the door), I sit in a chair on the landing waiting for him and I cry.
I love natural materials, but ironing my cotton blouses is out so its a choice between my husband Ken, who is so wonderful and never complains, the dry-cleaner (too costly) or wearing rumples clothes.
We are in our sixties. My husband has been running a small business from our house. No extra health insurance – my meds are $1,000 a month. Not much left over. Not living the life I thought I would be in my “golden years”. Which brings me to another no-no. I can’t work any more and help with the everyday expenses. Things are so tight, most times we are just making do. Had to re-mortgage our house two years. The new mortgage is for more than our original one. How will we pay that off? We used to think, well at least we still have the house…….
I could go on and on. This fibro has managed to hit every part of my life in a negative way. One of the worst is not being able to stand the pain of holding my grandbabies. It just breaks my heart.
Gosh I appreciate everyone’s story and feel better not in the misery of it all but because I can relate the stories put a smile on my face. You have to try and find the humor in things somewhere also and I guess seeing myself in so many others and trying to laugh at my own self/situation can give me a chuckle. I’m sorry to hear about any of the grieving. I too grieve but try to allow myself only a smidgen of sorrow. We change anyway over the years of the aging process, and our lives always continue to change. You should let go of the “old self” you used to be, just as you do your childhood or younger more wild years as time changes so do we. Fibro/CFS etc., think of it as just another one of those (and this is an unfortunate one) changes that happen to go along in our lives. Think about it … everyone in the world has something going on in their life and we are always learning about someone whether it be family, friends or ourselves coming down with something or being newly diagnose with something. On one hand I think it’s probably fair to say that we are all more compassionate people because of this and that’s a positive thing. We know that look of pain written all over someone’s face and I find myself always looking at others wondering who else is out there like me. (surprisingly there are many) I was diagnosed when I was about 28 with Fibro/CFS and myofacial pain syndrome and am 43 now but have had health problems since I was a child. At times I tried to live in an ignorant state of bliss (in my younger years, thinking maybe if I ignore it, it really won’t be) with Ulcerative colitis that’s not something you really can do. I have always been a very active person in work and recreation and have had to stop much/most of that but like others have said I try to do the things I love still but it’s of course at a price. I’d rather taste life and get a little something out of it (when I can) than give everything up completely. I’d be paying for something everyday in pain anyway why not get something out of it … it’s the balancing act that’s difficult for me and it doesn’t matter what I do, from showering to doing something more active that will put me out for who knows how long, either way I’m in pain, does that make sense to you guys? Then again there are times that I’m completely out and even the thought of doing something like getting up to eat is hurtful. It’s unfortunately the ebb and flow of this diagnosis. It’s all in how you cope with things that helps to get you through. Believe me there are days and weeks that go by and I wish I was someone else or think … this isn’t my life I’m just living it for someone else right now. But if you try to find something to hang on to that’ll get you through and keep you positive you’ll be all the better for it. I’m going to diagnose all of you with PMA positive mental attitude (which right now many of you are saying *%!@# yah right! sorry not feeling that way today lady) it’s not that easy and I’m not saying all of us with these diagnosis are negative just trying to promote a smile on everyone’s face and know that you’re not alone. I also find that while I know there is sooo much I can no longer do (and yes there are things I have had to give up also or do less often throughout the year) I know one thing I need from others more than anything and that’s UNDERSTANDING. I need understanding from my family and friends more than anything and that is sometimes very difficult for others to do when they’re not living the pain. This forum really does help and while it may have taken forever and a day to write this and read everyone’s responses it’s well worth it. It’s nice to see yourself in others and share, commiserate. I wish you all well and feel better for at least some of your day. Take the moments you do get and run with them … it’s like a hot flash – you never know when the next one is coming!
Be well
I have found that since being on Lyrica, I can do so much more, again. It is not perfect but compared to my lifeless self that I had become and the depression of not only hurting all the time but not being able to participate in relatively simple events in life, this is like “energy in a capsule” for me!
The thing I’d like to avoid the most is stupid comments from people who have never experienced a flare-up, yet think they can tell me it’s all in my head! I’ve dealt with constant pain and fatique and stiffness and fibro-fog for over a decade now….I’ve learned to deal with all that, to pace myself and say no when i absolutely cannot do something…what I haven’t learned to deal with is the anger and resentment i feel every time someone tells me that fibromyalgia isn’t real!
You know what I miss? Wearing cute shoes! I can’t wear anything with a heel. I keep kidding myself & the other day bought some cute boots thru mail order. I was so excited when I got the shipment. I wore them for an excruciating hour & my body paid for it for the next week or so. Man, they looked good & made my legs appear slender (which hasn’t happened in a great while). I’m sending them back for a refund.
I am learning the hard way to avoid sugary foods. When I get depressed, I eat them & then it seems like it is not long until I have a bad flare-up. My accupunturist told me that he believes that most of my symptoms could go away if I could stay off of sugar for an entire year. Yeah, right! What would I use for comfort.
Its hard not to give up but we need to hang in there, lean on each other, & focus on the stuff we CAN do. I like to listen to my favorite music loud in the car sometimes. It keeps my mind off things. If I’m having a really hard time, I sing really loud.
I’ve had fibromyalgia,cfs.for 8 yr.now. I was in denial for at least 1yr. Because when I came down with this I had severely infected breast implants (saline). I was just one of the unlucky ones who ended up almost dying, but instead was told I had silicone poisoning fibromyalgia, even though they were saline, they are made with a silicone shell that surrounds them. Once they were out I kept thinking once the poisoning is out of my body I wont have this any longer. But as we who have this disabling disease know eventually, it’s permanent. And I think the cfs is even worse than fibro at times. Depends on the day,etc. I live on pain patches (take as little as I can get by with) and stay away from the pain pills unless I am in a horrible flare. This Sat. I am going to go to the first fibro support group since I’ve had this. I’m 45 and am very fortunate to have such an understanding husband and Mom and Stepdad. Sure helps when people truly believe you, especially when you look so normal. I’m a teacher but decided to be a stay at home Mom when I got married 18 yr. ago. Now that our daughter is 16 I could really use the money, but cannot work. And what’s really incredible cannot even get disability because I haven’t worked enough in my life! Something is so wrong with that. We finacially did not need the extra income back then, I even worked (free) in our own business 3 yr. before I came down with this. Never thought to put me on a pay check, but looking back guess we should have. All of my Drs. have said I’m 100% disabled. Pain Dr. psy. and psyciatrist. but nothing can be done, unless anyone out there knows of something new, I’d love to here it. Thanks for reading, It’s nice to read others like me. K.
i have dealt with fibromyalgia pain for years but was not diagnosed until june/07. the thing that i find the most difficult to deal with that i can’t do as well anymore is crocheting. i absolutely love it and i can’t believe how badly it affects my upper body. all the burning pain and tightness that i experience makes me second guess whether i should keep doing it or not!
I miss so much. I’m fighting to keep my job. I don’t know how to do an 8 hour day – seems like it should be so simple. It’s not. So I am facing the horrible decision if I should try for disability. If I go down that road though – I will loose my home that we have been in for 24 years……..I miss my life
To Kay #25 comment … Have you tried getting disability yet? Anyone who has worked is entitled to a minimum through social security so get yourself a good S. S. attorney, they’re sometimes difficult to find but are out there. It does take some time to get through but if you have the medical records and doctor back up you should not have a problem once an attorney gets involved and if you’re denied you have a right to appeal, in fact it’s sometimes only after an appeal and persevere that you finally get approved (which is unfortunate) but you’re entitled to those benefits! Once approved you can choose to have them take out for Medicare so you’d at least have some medical/rx benefits … what state do you live in? It may not be a heck of a lot that you get but at least it would be something. It’s not easy but hang in there!!
I had a diagnosis of CFS one year ago. I had been sick for one year before that, I had a mononucleosis (EBV virus) that had already destroyed me entirely…!
getting used to a “new” life is so difficult, but it makes me be more fancyful: when I cannot open the coffee-machine in the morning because I have no strength in my hands, I switch to powder-coffee….which for an italian is a hell of an effort, can you imagine?
the thing I miss the most is my tours by mountain-byke -with a group of bikers- in the forests….that I really miss. I can only go around a little bit but easily get too tired.
and do not want anybody to be delayed because of me, of course. so I gave up.
everything can be done: it is only a matter of measure…but measure is difficult for human kind, isn’t it?
a little bit of this a little bit of that. it is not easy when you have been goint around the world for years because of your job and now you are stranded at home.
and what I cannot bear is people looking at me and saying: come on, everybody is tired, just take some rest and you’ll feel better! it really gets on my nerves!!
bye bye all of you, thanks for telling your experiences.
roberta
I can really relate to all of your comments. I have had CFS for 5 years now and the life as I knew it is long gone. There is so much that I can no longer do, I try to rest as much as I can and be at peace with the “new me”. All smells and chemicals bother me, loud noises, crowds of people, bright lights. I feel like I’m in Neurological Hell! I often wake up as if my life force has drained out of my overnight. I am 52 years old and feel like 95. But I still try to enjoy life when I am able and appreciate the moments where my body gives me a little break and I feel OK. Hang in there everybody. I feel for all of you!
After reading all the messages in this forum,I feel so much better. Thankyou for your help and support. I am not having such an easy time with this right now. I have cfids/fibro.I am now 52 and I feel so alone with this. i would love to be able to dorrespond with others who have this. Thankyou again. Lynn
I was reading and relating to all of your life’s. It’s 4:15 in the morning–can’t sleep because I hurt all over–can’t stand to have my body touch the bed or covers. It’s been stressful for the last few months—And I love my family and of course the grandbabies–BUT–My family does not call—its always been me trying to keep our family bond and I’m tired of doing it—sooooooooo—no phone calls since May.It’s like the old days your a “Lepper”.Has anyone had days when your pain medicine does not work???? I’ve been experiencing that once or twice a week…. Also has anyone noticed certain age groups more prevalent—–I just turned 55.Have a great week everyone!!!! Terry
Kathryn: I know how you feel. I still work full time and for the last year have done soooo good. Then bam….ended up in the er and was there for 4 hours…….and yep of course they could not find anything. Just mimiking the heart stuff. I am soooo exhaused and can barely drag myself up the mountain to work!! Thank God I have a good employer who gives me alot of flexablity! I am really depressed right now about this flare but it has reminded me to stick to my limitations…..I had canned all weekend and ate a bunch of tomatoes which are a no no!!! I am back to taking time off at least a day a week for the jammie time!!! Ah well this to shall pass……he he he
What a lovely group of fellow sufferers… I’m so glad I found you. I have nothing new to add, and can echo most of your comments on no-no activities. I’ve had CFS for 20 years, and I’m still grieving the loss of me.
I was told 11 years ago that I have Fibro. My older sister Has had it longer than I have. 3 Months ago my daughter was sent to my specialtist… thats right. She has Fibro. This week my son was told he has Fibro. The docters says that Fibro can be throught a family. Out of 4 sisters, 3 have Fibro. When I was told, that family members could have Fibro, I was so worried about my daughter and granddaughters. My son never entered my mind. I knew a small number of men have Fibro, but I just never thought my son would be one of them. He is 32,my daughter 36. I am 63 and I did get my disability the first time I tried. That is very rare. But I almost lost my home during the 6 months before I got my first check. I know how Kay#25 feels. I was a single person(for 15 years) trying to do it on my own. If my family had not stepped up to help, I would have lost my home. By family, I mean not only my children but my brothers and sisters. But I lost my boyfriend because of Fibro. He could not understand that after working 9 hour sewing upholstry, I didn’t always feel romantic. I went from sex 3 or 4 times a week to 1 or none. A husband or boyfreind that doen’t understand Fibro, can make the stress so much worse for you. I hope each of you Ladies the bestof luck. I have learned to pick and choose the things I want to do or can do…..I hope each of you can do the same. Best of luck
Yes, the shoes is one for me. The , putting on the heals. doing the make up, spending time on the hair etc and holiding my head up as an atractive woman. Im coming to terms with this however, and hope that with pacing and changing my job, I can find the energy to be attractive again.
I miss being able to look at a room and say, right, Im gonna paint this room or rip up this carpet, start a big job like sorting the shed out etc. I just do not do these things any more.
I miss riding my bike through the puddles and in the rain as I can not lift the dam thing on to my car now. But alas! I am aiming to get back on it soon. One day ! Love to all x
But Im working to wards the things I can do and I agree with the stopping and starting tactic. Instead of cleaning the whole house I start one room and finsh it wehn Im rested again.
It is a horrid condition and I am only 44, i dont socialise as I can not stand the noise.
After reading everything you’ve all had to say, it’s like looking in a mirror! I really thought I was the only one who grieves for the “lost never to return” me. As well as FM I have lupus too, and I know oh so well about downsizing. My once beautiful garden looks like a jungle. My house hasn’t been decorated for years now, and boy it shows! I’m embarressed to let anyone in. All the things I used to to love are now denied to me. Reading, knitting, drawing and so much more. Two years ago my youngest daughter had her 1st baby. She was living at home at the time, so I was able to feed change and nurse my little granddaughter. As she grew and became mobile I thought nothing of the fact that I could no longer lift her. Then three months ago my youngest son and his partner had their second baby. Their older daughter is nine. When they brought her round to see me, WHAMMY!!!!!!!!!!! I found myself handing her back to her mommy after holding her for just 5 MINUTES! The pain in my arms and shoulders was sooo bad, plus I was frightned of dropping her as the strength in my upper body is zilch! The baby weighed 6lbs. So, I feel pretty low. I’m 62 and up to 15 yrs ago, I was like a 26 yr old! Now I feel like 92! I started keeping tropical fish two years ago. I love to sit and watch them, they’re so relaxing. But now, I’m afraid that pleasure will go too. My memory is so poor now I can’t remember whether I’ve fed them or not, and most days I’m not well enough to to do water changes. My husband is wonderful, he quit work to stay home and care for me and the less I can do, the more he has to do. I don’t want to burden him with anything else. I’m so sorry this has turned into one long gripe, but here in the UK understanding of this illness is almost zero. I have one dear friend who does understand. For one thing she has it too, and secondly she’s American! I want to thank all of you for the insight you’ve shown me! As for no-nos, let me see.
1) flourescent lights – evil!
2) loud noise of any sort, can’t even stay in the kitchen with the washer or dryer going.
3) crowds
4) travelling, the shops an back is my limit
5) anything that requires balance. Mine’s shot to pieces!
6) bathing and dressing, my husband has to help me.
There are probably loads more that I can’t remember right now!
I wish you all the best in life,
Jo
I was diagnosed with FM 4 days ago. I’m 20 years old and I’m going to try my best to do what I can, but understand that I can’t always do what I want.
I haven’t worked for two months – if I had one goal it would be to go back but I know there is a chance it might not work out.
Things I avoid:
- Going out! Everyone goes out and I often don’t have the energy.
- Grocery Shopping: On good days yeah.. bad days no.
- Staying up late
And pretty much anything that involves walking for really long periods of time or anything repetitive with my arms.
my #1 thing that just flattens me is heat! either by the sun, which is why I had to move from AZ to WA, or indoors, like at work. Had to work in Greenhouse once, I was sick for a week. Another thing is chemical sensitivity. Hubby is a mechanic ;X and sometimes he comes home and one whiff and the pain starts. Showers also are another issue. Seems so silly but when I take one, I need a nap afterwards, so I try and do them in the evenings. Shaving is hard as well. I don’t do a good job, and I don’t muchly care lol. I have 5 kids (yes 5!) and they all know, that I am sick sometimes and they all deal well with it. I work full time, although sometimes I think Why do I do this to myself. But I press on. And know my limitations, although my dr says maybe time to look at RA in addition to Fibro. :: sigh :: Take care everyone
thumbs up!!
*******
This is the most intelligent set of blogs and information
I have found.
FINALLY~intelligence, compassion and smarts!
…I’m bookmarking this site in CAPS. I’m sure I’m not the only one that..you know, sat and read all the
responses. all of them.
You know how that is…you start reading and
pretty soon you’re on to another site.
For sure not this one.
*******
in case we forgot what the topic was: (well I had to
remind myself)!
“Things to Avoid When You Have Fibromyalgia or Chronic Fatigue Syndrome”.
I like reading the numbering part: so I’m gonna do it
that way~ sorta. So basically this is what doesn’t work
for me:
1.Ignore pain, fatigue or any symptom of other sickness (like a cold, the flu, or more serious issue)
2. Weather extremes. Too hot, too cold. Barometric
pressure drops and it’s all over for me. And wind, I havent’ seen anybody talk about wind. Wind makes me
irritable and edgy..
3, ignoring thirst or need to eat. In the type of job
I have*, it’s imperative to stay hydrated. Falling Blood sugar levels can bring on migraines. So eating and taking snacks with me is important and a must.
(this is also on
my “Work in Progress List” ).
4 Large, “moving” crowds. Such as in street fairs,
outside parties or sports events like hockey, football.. Small groups and seated groups like at
a symphony or small jazz venue, workshop etc. works fine.
5. DEFINITELY A NO: shopping at COSTCO. I have a time limit: one hour.
And if I can hang at the book section for awhile that’s
okay also, and let my husband cruise the aisles. SO WHAT IS UP WITH THE LIGHTS they use? Horrible.
6. Push or ignore sleep/waking schedules. If the body
says it feels fine to stay up until midnight because of
fun, I know it’s lying to me! Because the next day she’s
just feeling awful this body of mine.
7. Overeating-definitely not for me. But then the bad
habit of my “popcorn addiction” is not so good either.
The popper broke. No more popper no more addiction. See how easy it can be?
8.Say YES when I MEAN: “No”, “no way” “are you crazy”?
9. Push limits of tiredness to crankiness. (at what point did my mind not understand “NO”)?
and the part that Dena wrote in Sept.3rd about wearing cute, sexy, PAINFUL SHOES! Did that ever resonate with me…and you Laaadies??? whaddya think> Wanna cop to that also?
Just yesterday I was looking so stylish in those pointy heels that I felt all day and at every step, the jolting, electric message to my brain…”are you a retard down there”? hallooooooo? stop it. stop walking, crawl, take off those shoes, they are not sexy, nobody even has seen them. They can’t look away from your face that is screwed up with the look of pain!”.
And my brain screams: “Are you living in a different time zone down there”? see, another addiction. Sexy shoes that make my ….EVERYTHING from the toes up it just hurts WORSE. Shoe rehabilitation coming up real soon.
And I think I was gonna say something about the kind of job I have, which is really not that important, other than to say, like most all of you, it requires thinking, speaking and occasionally acting like I’m just a regular type person. That’s where the proper medicating comes in.
and i do. Medicate appropriately and correctly for my own level of fibro. Not too much, not too little, but just
right.
Like the sugar we’re not supposed to be eating.
So for me, despite the fact that fibro gets mean and takes a huge chunk of compromise, I chose to laugh,
dance and show up for life
most days.
********
To everyone on this site it is just like looking in a mirror.I am 43 and have had cfs-fibro for about 10years.I can fully understand the grief you go through the “I used to be able to do that” phrase is always coming out my mouth.But having said that I try to stay positive.I am still able to work part time for wich I count my blessings.Like a lot of you I find temperature a problem also noise and light and comfortable clothing impossible to find especially on bad days.But giving up is not an option for me. So to everyone out take care and try to smile Thanks for taking time to read this. Shaz
Wow…I was feeling so isolated and alone in my pain and frustration until reading all of your comments. I have been seeing my primary care doc since mid-November 2008 to try to get a diagnosis. She keeps saying she is “leaning toward a diagnosis of Fibromyalgia” but still does not definitely think that is what I have. I’ve had x-rays and tons of blood tests and still no definitive answers. The only things that have shown so far are a “slightly elevated” C-Reactive Protein and white blood cell count. The meds she prescribed to help me sleep caused me to wake up with a headache every morning and experience diziness and nausea throughout the day…so not worth it! I’m switching back to my melatonin! I’m finally ready to see a Rheumatologist so that I can *hopefully* get a diagnosis. A trip to the grocery store for a couple of hours to buy a week’s worth of groceries leaves me wiped out for the rest of the day. It’s getting to the point that I can barely lift some of the stuff to get it into the cart without having terrible pain in my arms/neck/back/shoulders! The other thing is that I keep losing my car in parking lots and wandering around like an idiot trying to find it (not just at the grocery store – it’s happened at work too!). Most Friday nights (and into Saturday morning) I sleep for 10-12 hours now and still don’t wake up feeling refershed! My husband has been so understanding and taken such wonderful care of me. I don’t know how I could ever survive all of this without him by my side loving and supporting me! I have two children – ages 7 & 10 and I’m so tired and in so much pain I can’t even play with them or help them with their homework anymore. My husband pretty much does all of the housework. I can barely manage 8 hours a day at work sitting at my desk behind my computer…I’m really so scared that there will come a time when I won’t be able to work and we will lose our house if we have to go from 2 incomes to 1. I’m only 28 and I can’t believe how bad I am feeling…feels like I’m 90 some days. Now my primary care thinks I’m depressed…there is a big difference between being in constant pain and feeling a little sorry for yourself when it’s at it’s worst and BEING DEPRESSED…why don’t doctor’s get that! She wants me on Prozac…great…more wonderful side effects! We should all pray for each other for relief from these debilitating symptoms! Take care of yourselves.
I was diagnosed about 6 years ago, and prescribed Plaquenil by my rheumatologist. Three years later I had a small breakdown in my gp’s prescence, and he prescribed Cymbalta. It has been a miracle drug for the fibro, but the side effects are sobering,especially since my evening red wine is the one pleasure in life I refuse to relinquish!! I have been 10 days Cymbalta-free, but the pain and fatigue are indescribable. I am struggling to find alternative coping methods, while juggling my job, a wheelchair-bound husband, and the constant in-my-home care of 2 mentally and physically handicapped family members. I am 56 yoa going on 156. Please, God, HELP.