May I vent my frustration with fatigue and fibro? I'm so tired of being tired!
By youdontsay
@youdontsay (3497)
United States
May 7, 2007 8:15pm CST
I'm in the midst of a chronic fatigue crash and a fibro flare. I'm miserable. This isn't by any means the first time I've been through this, of course. But I've been doing fairly well for a long time and haven't had this level of fatigue for more than a day or two. This is about two weeks of it and I'm losing patience with it.
Rest helps very little. Sleep helps for a couple of hours after I wake up, then I feel like the plug has been pulled on my stamina and I'm barely able to move around.
For two weeks I've been practically useless for more than two hours a day, maybe three if I'm sedentary. There are so many things I want to do and I have to just do so very few of them.
I've had this for years and most of the time it is manageable. I can pace myself throughout the day and be almost normal. I'm not able to walk or stand for a long time, but those are things I can work around. But when it is bad, like now, sometimes the only thing I can do is be horizontal. Often I'm even too fatigued to read. I can't concentrate.
Last week my brain was so muddled that I was confused about when my art class starts - noon - thinking it started at one p.m. I've been attending the class at the same time for years! But when the fatigue is bad my brain just doesn't work well. It isn't even really safe for me to drive when that's happening.
Usually I can figure out what causes the extreme fatigue or pain. This time I can't. Usually it is a result of me having pushed myself too hard and it takes me a couple of days to get over it. I have no idea what caused this crash and it has been two weeks of taking it easy and I'm not any better.
I'm going to the doctor tomorrow. At least I have a doctor who listens to me and believes me when I describe my symptoms. I just don't know if there is anything she can do. Maybe a B12 shot or something.
Anyway, thanks for listening. I know these things always pass, I always get better than this. I just need to be more patient and see what my doctor has to say.
7 people like this
14 responses
@auntyann (16)
•
8 May 07
Hi, I have had fibromyalgia for years so I do understand how you feel. I have bouts of extreme fatigue that can last a long time, I just rest as much as it allows and drink plenty of fluids (water, juice, smoothies etc) I find that this makes me more alert. I know that this doesn't always work for everyone but it sometimes works for me! Good luck at the Doctors and let us know how you faired.
2 people like this
@youdontsay (3497)
• United States
8 May 07
Thanks. It make sense that fluids help with fibro. Fibromyalgia is in the fascia tissue, which is what surrounds the muscles and organs. If we are dehydrated it is more likely to cause friction when we move. So hydration is important. I've been drinking more water and less carbonated drinks, which seems to help some.
I'll let everyone know what the doctor says.
1 person likes this
@patootie (3592)
•
8 May 07
Glad you are getting some help .. I have fibro and I take a very good multi vit + minerals daily, large doses of cod liver oil, Glucosamine Sulphate and make sure I keep topped up with vitamin B with wholmeal bread, marmite and in winter may even take yeast tablets too ...
I've been quite a lot better since starting all the supplements .. at least i can get up every day now .. hooray !!
2 people like this
@youdontsay (3497)
• United States
8 May 07
Saw the doctor this afternoon. She gave me a B12 shot, at my request, and wrote orders for me to have a sleep study to be sure my apnea has not worsened. She listened carefully and considered everything I said. She was responsive, which I appreciate. She had blood drawn for liver enzymes and offered alternative pain medications.
I decided to not add or change any prescriptions until the results of the sleep study. Then I may consider a change.
And I stopped at the grocery store on the way home so my spouse could go in and get salad from the salad bar.
So, hopefully, I'll start feeling better tomorrow!
1 person likes this
@emeraldisle (13139)
• United States
8 May 07
Well I'll be honest, I don't know for sure I have Fibro or Chronic Fatique. I've had a bunch of doctors ask me if I have Fibro but none have diagnosed me for it.
However that being said reading what you wrote it could have been me the last two weeks. I have no energy. I want to sleep and when I'm not sleeping I'm in major pain. Everything I do takes a ton of energy and I end up in pain, even something minor. I hate it. I can't afford to go to the doctor right now so I'm just dealing but it's miserable. Nothing seems to be working right for me; not my body nor my mind. It's like someone is sucking the life out of me. Like you I can't pinpoint what is causing it either. I haven't done anything to over do or anything. It just makes no sense.
@youdontsay (3497)
• United States
8 May 07
Yep. That's it exactly!
I'm usually better than this because of the medication and supplements that I use. But for some reason even they aren't helping. Or if they are helping, I'd be worse than miserable without them!
2 people like this
@emeraldisle (13139)
• United States
9 May 07
I'm glad you have medication to help. I have a few pain pills left but I'm hording them until the last possible moment. I can't get into the doctor until I prove I qualify for Medicaid and they say "ok you get it". Fun huh? I just can't afford a $100 minimum to see the doctor plus perscriptions. I swear the medical field is the biggest rip off at times.
2 people like this
@patootie (3592)
•
8 May 07
Awww .. bless you .. I know only too well about fibro flare ups .. dratted illness .. I am a long term sufferer and I am always fatigued, always in pain of one kind or another .. and you have bo need to tell me about those flippin' 'fibro fog' brain days .. I battle through the fog most days hehehe ..
The one good thing about fibro is we rarely have the same symptoms for more than a few days .. although the underlying feeling is of just getting better from a bad dose of 'flu (not a cold but the real influenza jobbie) ..
Have you visited www.fibrohugs.com web site .. it's Canadian based but has some wonderful and very helpfuil info on the site .. including the lisy of the 63 main symptoms we battle with constantly ..
Hope you will start to feel a bit more 'normal' very soon ..
2 people like this
@patootie (3592)
•
8 May 07
I do better when I try and avoid processed foods .. my disability money isn't enough to buy all organic foods .. but I do try and avoid the 'worst' of the processed foods and I am generally much healthier .. a session of eating ready made foods plunges me into a fibro flare up as sure as anything ..
2 people like this
@youdontsay (3497)
• United States
8 May 07
You might try checking out your food sensativities for the brain fog and fibro. I found that I was thinking more clearly and having less pain when I went without dairy for four or five days. It may not be dairy for you, although it is common. It might be wheat or something else. But go without one food type for four or five days at a time to see which one most effects you.
I went to the doctor today and hope to be feeling better soon.
1 person likes this
@lreddell (172)
• United States
9 May 07
Oh Girl, I feel for you! I too have FMS, and the Fibro fog is horrible, just by itself (not to mention the pain). My memory is so bad most days; I can write the date 20 times, and still have to check the date to make sure I have it right. My husband teases me that I am developing Alzhiemers, which really doesn't set too well. In fact it makes me furious. I cannot help that I am a victim of FMS. I don't know why it chose me to attack. Now, for the pain... we've have nasty storms for the past 2 weeks. And when the weather swings, it makes me flair. Bad. And I am sooo tired from the pain, trying to work, keep up with the kids, the housework, the bills, etc. Sigh... Anyway, just know that you are NOT alone in your fight against Fibro Fog and Fatigue.
PS Have you tried Cymbalta? My doctor prescribed it to help get my seritonin levels back in whack. I have just doubled my dose because I can't sleep. Good ol' sleep disorder - LOL!
@youdontsay (3497)
• United States
9 May 07
Thanks. sorry you have to be in my same boat, but at the same time it is comforting to know that others actually understand.
I take an SRI, too. Doctor says we might try adjusting meds after the sleep study results. I hate changes meds. The process can be really distressing. But I'll not cross the bridge til we come to it.
2 people like this
@lreddell (172)
• United States
9 May 07
There are thousands of other FMS victims that understand. Yes, changing meds is the pits. I hate it. It is exhausting. Until your body gets used to the change, everything seems to go bonkers, ya know! Hang in there. Just take a day at a time :) Hugs.
PS Feel free to PM me if you'd like to talk further, anytime.
2 people like this
@teapotmommommerced (10359)
• United States
8 May 07
I am sorry you are so tired and your brain is so muddled. I have fibro also and I know what you are talking about. I know that stress brings mine on, are you stressing about something? Heat also brings mine on.Now that it is summer time once again I will be having some bad days. I am in California and when it was so cold down to 17 degrees I was fine. Now it is 94 outside so I am feeling the results of the heat. I do have a swimming pool but it is to cold to go into it now. Last week for two days I did nothing but sleep and that is unusual for me.
What I cannot stand is the pain and heaveness of my arms and legs. I also have back pain and dizziness. The dizziness no one can tell me what causes it. I do have problems thinking but I thought it was the cause of the dizziness. Maybe it is the fibro? It has been years since I looked it up. I have never gotten a B12 shot so I do not know if that would help me.
I do not drive much because of the dizzy spells. So I know where you are coming from when you say you should not drive.
This summer I put in a mini veggi garden. I hope I can handle it. I have three tomato plants and a row of green beans and a large planter of squash and one of cucumbers. The squash and cucumbers are in an area where they can vine.
Good luck at the Dr's tomorrow.
@youdontsay (3497)
• United States
8 May 07
It could have been the stress. I had heavy responsibility for a couple of fund-raising projects and I kept having one problem after another with them. The fatigue crash occurred soon after the end of the biggest project. Then I dragged myself through the second one, finishing three nights ago.
I've designated this week as BE GOOD TO ME WEEK!
1 person likes this
@maevic (819)
• Bahrain
8 May 07
I have the same problem with you and I checked some websites regarding my condition. I don't know what is chronic fatigue syndrome is but when I put on the search tab the problems I'm facing, all leads me to the same sites regarding CFS. I'm a very active and independent girl but after a year ago I feel that my body is so heavy. I can't make any chores and can't even run. I don't know but i feel so lazy to move even to eat. My muscles are aching especially on the lower part, legs and my hands. I usually have this headaches and always longing to sleep. Even I did not do too much work, i feel so tired. i cannot remember the infos on my work, i had a hard time in concentrating on things. Sad to say there's still no cure on this disease but from time to time I get active again but still there are days that are like this. I went to the doctor and she told me that I just need to relax and change my eyeglasses, but she cannot understand me.
I have subcscribed in CFS emails. So ican see updates about this. I'm fighting to it as long as I can. Check these links for symptoms of this syndrome.
http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395/DSECTION=2
http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS00395/DSECTION=2
@youdontsay (3497)
• United States
8 May 07
Oh, dear, find a doctor who knows how to treat CFS. I've struggled with it for close to twenty years. I usually feel much better than this, however. So there is treatment that helps. You just need to find someone who is willing to work with you to find what works for you.
Are you anywhere near Mayo? I understand they do a lot of work with CFS. And there is a CFS support group that keeps a list of doctors that deal with the syndrome. Don't give up. Eyeglasses might help the headaches, but it won't give you the energy you need.
1 person likes this
@RebeccaLynn (2256)
• United States
9 May 07
Boy is this a club that I wish I didn't belong too!
I have been dealing with my latest crash for going on three weeks now. A lot of mine, I think, has to do with this crazy weather. Hot and humid one day, cold and rainy the next.
My prayers are with you. Sometimes I think it's all we can do!
@RebeccaLynn (2256)
• United States
10 May 07
I don't know, but if I find out I'll shout it from the rooftops!
1 person likes this
@youdontsay (3497)
• United States
10 May 07
Yes, I think the weather was a factor for me, too. Actually I think it was a combination of things coming together that made it such a big crash.
I did feel some better today. I even did a tiny bit of housework and went grocery shopping. [I use the electric cart at the store.] I'm worn out, but at least it is from having done something!
Exactly how do we get out of this club? LOL
1 person likes this
@patgalca (18181)
• Orangeville, Ontario
8 May 07
Since you say you didn't overdo it, the only other reason I can think of for this crash is the change in weather. We jumped from winter to summer with barely a hint of spring in between.
I crashed this week because I overdid it on Friday. I could not get out of bed both Saturday and Sunday. I felt like a bag of lead. I am tired all the time. I keep busy because if I just sit down to watch tv I will fall asleep. Right now I am dealing with sinus headaches that will not go away. They are driving me crazy.
I know how frustrating it is to not know what brought on the flare but like someone else said, the more frustrated we get the worse we feel. We are causing ourselves more stress which in turn affects our body. It's a vicious cycle.
If you are doing all you can do for your illness, as I am, then I doubt the doctor can be of much help. But perhaps there is an underlying physical reason for this flare and your doctor will find it. Good luck!
2 people like this
@youdontsay (3497)
• United States
8 May 07
Thanks. At least I'm not the only one who goes through this. It helps to know there are folks who truly understand. Most people think that all I need is a good night's sleep and I should be fine. They don't understand that it doesn't work that way.
Thankfully my spouse understands and is supportive.
1 person likes this
@cher913 (25782)
• Canada
8 May 07
Yes indeed i know the feeling...i have sleep issues which have lead to chronic fatigue and though i am well most days (i work p/t) the last few days i have been very tired and have hopped into bed as soon as i get home from work!
I would suggest besides the drs, you might want to check out some herbal remedies...how is your sleep @ night? You could try melatonin for that...ginsing might be something else you might want to try...do some research and empower yourself!
2 people like this
@youdontsay (3497)
• United States
8 May 07
Thanks. I've used a CPAP for years. Today the doctor wrote orders for me to be retested to see if my apnea has worsened. It has been probably eleven years since my last test.
I used meatonin until they took it out of our stores here. I take several supplements that help support stamina and reduce pain. It just in a crash like I'm in now it just isn't enough.
1 person likes this
@browneyedgirl (1264)
• United States
8 May 07
I'm glad you're seeing a doctor about this. I don't know too much about Fibromyalgia, but I know what it's like to be debilitated by illness. I also know that it's very important to practice good self care. While it's extremely frustrating and hard to accept, we don't really have a choice. Sometimes, the more we allow the frustration to affect us, the longer it takes to get through and back on our feet. Best wishes to you. I hope you feel better-way better-very soon.
@youdontsay (3497)
• United States
8 May 07
Thanks. I hate going to the doctor, but my spouse says I really need to. And I've learned to listen and trust their perceptions when my perceptions are so muddled by the fatigue/pain. So I'll go.
I will feel better. I know it. I just wish it were sooner than later!!!!
1 person likes this
@Woodpigeon (3710)
• Ireland
8 May 07
Vent away! I don't have Fibro, but I do have the conditon that required the shot you mention, B 12 Deficiency. I get iron anemic at the drop of a hat, and never quite have enough of those blood cels that carry oxygen. There doesn't seem to much they can do about it besides give me B12 and iron, and I haven't felt truly 'normal' in probably close to eight-ten years.
I think unless you deal with something like this, you don't get it. I am sorry you are so fed up. I have learned to pace myself, and know I am only going to be able to do so much before I 'hit the wall'. Thehard part has been getting those around me to understand it because I looke well.
Or I thought I did anyway! My son's friend's mom must have gotten wind of some of this because she is always telling me how tired I look and as asking if I'm all right. I asked my son why she is doing it because I look fine. He told me point blank that I don't look fine. I always have big circles under my eyes. I am very gray for my age, and I am often pale. It was a wake up call.
@kumbarn14 (735)
• Pakistan
8 May 07
Very sorry for the things you are going through. I am a Muslim and as a cure with the blessings of my Almighty Allah, I wont you to read these words "Bismillahi Rahumanir Rahim". over and over again and start walking, breathing heavily or normally,Physically you should give softening to your neck, hip, shoulders, loosen your arms and stretch them out and also lie on the ground and do the same to your legs. Do slowly but effectively. When your mouth go dry drink water. Please try to eat fresh fruits and salad, prevent read meat. Do noy stay hungry or do not have a timing for your food, whenever you feel like eating something eat. This is the healthist way to keep your mind in order. Your mind is tense please receite these words slowly and you will see that you will find coolness. I am telling you this through my experience when I was about to get a stroke these words kept me strong and I was able to recover. Thanks to my Almighty Allah for blessing me these words. It is your wish as I saw your plight I could not ignore.
2 people like this
@youdontsay (3497)
• United States
8 May 07
Thank you for your kind concern. What does "Bismillahi Rahumanir Rahim" translate as in English?
I've been increasing the amount of water I drink and fewer carbonated drinks. But I haven't been eating as many fruits and veggies as I used to. Thanks for that reminder. I will get back to that. When I am fatigued I don't feel like preparing fresh fruit and vegetables, so I kind of fill up on things like bread and potatoes and dairy products. On the way home from the doctor today I will stop and get salad from a salad bar so I don't have the excuse of not feeling like preparing it.
Thanks.
1 person likes this
@goodbody33 (170)
•
10 Jan 08
Hi there, so sorry you are going through a bad patch. I feel exactly the same at the moment, for the past 6weeks i have been very unwell and i can't figure out what has caused it. Like you i can usually figure out what has brought it on. Normally i can cope and like you i pace myself and you plod on, but at the moment i too feel very miserable and quite distraught at not even being able to do half an hour nof anything more than spend time on my laptop.
I am going to see my specialist on tuesday but i am sure that he will just say that its a flare up, or my medication has stopped working again. It makes you think that i won't even bother going as you've heard it all before. It was my 40th yesterday and i am really miserable as it was supposed to be a big one and it turned out to be a disaster. i did nothing all day.....
I have been on gabapentin, that eventually stopped working even though i got up to the maximum dose. I have now been on lyrica for about a year and a half i am on three a day and i know that is the maximum, so will it be another change of medication? i'll have to wait and see.
I hope you feel better soon, at least i now know i'm not the only one..:-)
@youdontsay (3497)
• United States
10 Jan 08
You definitely are not alone!
Everyone seems to be having flares these days. I'm wondering if it isn't the crazy weather changes. We've gone from below freezing to nearly seventy degrees in a week and now are back in the low forties and going down.
I know that rainy weather is hard for me. And we've had plenty of that this year.
Have you tried eliminating certain foods? at one point I discovered that if I go dairy-free for a week it helps enormously. Then I can begin introducing a little dairy again.
Give it a try. It sure won't hurt.
While I'm not feeling a lot better I am determined to not let it get me down emotionally. Most days I can manage that, especially if there is any sunshine.
Here's hoping you have sunshine too.
@goodbody33 (170)
•
10 Jan 08
The damp weather definately dosn't help matters, i have also cut certain foods out. I have read recently that if you cut out re-fined carbohydrates that can help. so i think i'll try that one, now xmas is out the way and the mince pies are all eaten i might stand a chance lol..
One of the problems that i find is that there are so many things that are supposed to help that you don't know what to try first and then you can only introduce one at a time. I think i need to make a plan, write down all of the different things and then work my way through them one by one.
I think thats what i'll do and i'll post it on here and see what feedback we get. hey if we get a group of us together and each try one thing, put feedback on here as to which ones work ect then we can work through them quicker.. Just a thought, think i'm getting desperate now lol
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