Doubting Your Unwellness With Fibromyalgia & Chronic Fatigue Syndrome

I feel this all the time, especially when I go to the doctor because I see no reflection of the urgency in them that I feel sometimes. The only thing that seperates a crazy man from a normal one is the definition of what is normal. When my dad was a boy, doctors thought he was an hysteric until they figured out he actually had something strange called “asthma”. LOL.

I don’t understand how my body can feel like it is dying, like every cell is saying “help me” and the whole world around me is going “well we don’t know what it is so just suck it up. it can’t be that bad”.

Just have to take it in stride and find purpose in it.

When I was diagnosed with fibromyalgia in the early 90’s, I didn’t believe the doctor, and ignored it. When symptoms worsened and new symptoms occured, I was disgusted. I didn’t trust this pain that kept changing and was embarrassed to go to doctors because the symptoms just didn’t make sense. I continued to go to doctors to find relief. The pain got very bad, and I was no longer able to function at a part-time job and taking care of my daughter. In looking back, I am amazed at what I went through.

But, even now, when I feel good, it is all like a bad dream. I go into denial, and pretend I don’t have a problem at all. But, I will continue to pace myself, nap frequently, take my meds & supplements, reduce stress—all the things I learned control fibromyalgia. I accept that I can’t hold down a job, I can’t travel, make definite plans, can’t make promises to my daughter and friends that I know I can’t keep. It took a very long time to accept having to reduce my expectations in life. But accepting that fact has helped. I have learned to enjoy small pleasures, small successes. I am happier.

I sometimes wonder if my illness is all that bad when I feel good, but when I start feeling bad I wonder can it get any worse. From the time my feet hit the floor in the morning until I try to sleep at night, I feel terrible lately. Every fiber of my being is screaming out in pain. I feel so stiff and sore all the time.

It is hard to believe that several years ago, the medical community doubted that there was anything remotely like fibromyalgia. It was said that this syndrome is all in your head, not real. I wish someone could feel the unending pain I feel on a daily basis. All I can do is take hot baths and an occasional massage along with exercise. Medications do not help at all. I do not want to spend the rest of my life in a state of sleep so I do not feel the pain.

This monster has me thinking I have ADD due to the fact my concentration is so bad. I am attending college right now for my bachelors of psychology and it is hard for me to concentrate. Then I hear of this event called FibroFog. I have not had a chance to do a lot of research on this, but I bet it has something to do with my concentration being so bad.

I could go on and on about the way I feel, as I am sure many of you feel the same way or worse. It was just good to get it out and finally let someone know how I feel.

I “ditto” comments 2 & 3 ( can’t remember names, even tho’ just read!!!

For a while my experience when I had a good day after many, many bad ones was “could it have all just been in my head”. I have learned NOT to have that thought because the ugly monster comes after me with a vengence!

Re: comment ?wondering? if ADD. I say PROBABLY, as I have done more and more research over last 10-12 years re: my CFIDS have become more convinced that’s another part of my CFIDS. And now I think my CFIDS sleep problems (and therefore trying to function in 9-5 oriented world) have always been DSPS which seems to have some ADD connection.

If you can’t sleep well, then of course you won’t be able to concentrate. I have the same problem, but I think mine is just brain-fog and fatigue (and the distraction from pain).

I’m trying to keep working until I can retire next year. There are days when I barely make it until quitting time.
I keep asking myself if this is “real” or if I’m feeling normal fatigue and stiffness from spending too much time at the computer. Of course it can’t be real. I don’t notice other employees experiencing these symptoms.
I keep thinking I need to throw in the towel and start the disability process. I wonder if I’m doing more harm than good to my body. I just hate to give up.

I’m definitely one who occasionally wonders not only ‘Am I really that ill’ but more ‘Am I (getting) better?’ And then I get slammed by a flare up or another illness and can’t believe I questioned it.

But you know where I learned that doubting from? My doctors. I’ve had the ones that don’t believe fibromyalgia exists. I’ve had the ones that don’t believe fibromyalgia can be the excruciating torture that it is. And I’ve had the ones who have said, when I have gone to them about a new painful symptom or pain that is tearing me apart, “You have fibromyalgia, of *course* you’re going to feel pain.’ That last attitude is the one I blame for all the doubt. It’s pathetic when you can’t face going to the doctor when you are seriously ill or in pain because history has shown that you’re meant to expect it, that it can’t be as bad as all that, and that there’s nothing they can/will do.

I sometimes wish I could put a bandage on the part that hurts so people would KNOW there is something wrong with me. I walk with a cane all the time now, even when I don’t need it because it says to people “this lady has a problem.” It also reminds me that I need to pace myself even if I feel good. I tend to overdo when I am feeling good and then suffer for if for days afterwards. And yes, I often doubt that this whole thing is real–I’m crazy, or it’s something I can fix.
The hardest thing for me has been to admit that parts of my life are lost and that I am probably never going to be able to do a lot of things I used to.
Fibrofog is real, and frightening. I always feel as if I have had a stroke when I suddenly stop talking in the middle of sentences, or can’t remember words. Probably even more terrifying because I am a member of MENSA and Interle and we pride ourselve on being very intelligent.
My best advice, find a good doctor, even if you have to hunt for a long time–it makes all the difference in the world.

I feel like this anytime, I start feeling really good. I get scared because first I think, how will I ever find a job if I am getting well, then I think was it just something in my head. Then in a few days, I come down with all of my symptoms again and feel so bad. I laugh at myself thinking wow I thought I was getting well, and it was just the CFS fooling me!

I have felt like this before, and not just because of the fibromyalgia (which I am starting to doubt again if I do have it because of some information that came out about the possible cause for fibro as a result of an article in the medical journal called Arthritis and Rheumatism). I go through that on occasion with some of my other health problems too until my body reminds me that I do have these problems.

I have also felt these things until I became familiar with the research done by Dr. Garth Nicolson. He went up against the govt. in order to help his daughter who returned from the Gulf War and his family who were then infected. Of course, GWI was a psychological illness until the truth was uncovered….so was Morgellon’s. Wake up America and demand truth from those who try to hide behind the cash flow and keep us from truly knowing what is going on and why we are all so sick.

Do you get those doubts about your illness and its severity? – YES, and its usually when Im having a “good spell” (remission). When I am denying that CFS/FM is a problem for me I usually end up over-extending myself (’ll do my part-time job, maybe take on a bit of extra work), forget to pace myself (perhaps participate in a social event or two, do extra housework) and generally begave the way I used to before I got sick. Then the warning signs begin (pain, poor sleep, difficulty concentrating) and then I’ll remember “oh yeah, okay, so it is there,” and I will start to slow down. Sometimes I catch it in time and by accepting my limitations, slowing down, resting and pacing myself I am able to stop it from getting worse. But sometimes I don’t catch it in time and I crash. Severe constant pain and stiffness, severe headaches, excrutiating exhaustion, difficulty sleeping, unrefreshing sleep, and the inability to do anything but simply exist in my cacoon of illness. Thats when I face any sort of denial head on and must accept and embrace my limitations.
Do the doubts of people around you get inside your head? NO, because their doubts come from ignorance. I happily take on the responsibility of teaching them about CFS/FM in hopes of enlightening them. However, if they remain doubtful or ignorant, their doubts only make me angry and frustrated. A comment above said “walk with a cane now because it says to people this lady has a problem” which I think is brillient because people seem to need to see a cane or a wheelchair or a cast, or a tremor, or something visual to help them believe we have an illness (alhough they seem to accept a heart condition as a viable illness, although there is no exterior proof).
It is my hope that, with continued public awareness and with continued research into cause and treatment, more information will become available not only to all of us who suffer with these illnesses but also for all those “doubters” out there.
In the meantime, websites, and blogs, and support groups help us to reach out to others with the same pain and problems, to realize we not alone, and help us to cope with this terrible burden of being “the walking dead”.

Boy do I understand doubting myself and this horror called fibromyalgia. When I first got sick I had the best job of my life. I went from a valued employee to unemployed in a year’s time. I remember the look on my co-workers faces when they couldn’t see any physical signs that I was sick. They didn’t seem to see the deep dark circles under my eyes or my tears when I had to stand for 8 hours a day.

My family also didn’t understand. In the beginning I overheard one of my siblings suggesting to someone that it was all in my head. hat was the last time I joined a family function when I was in a active episode.

I greatly appreciate this web site. For a change I can say how I feel and know that someone else understands exactly.

When so many people around us (family, friends, co-workers, doctors, etc) don’t believe or understand that there is something medically wrong with us, it’s hard to believe and understand it ourselves. Because my symptoms vary so much in type and frequency, I once took an entire list of them to my doctor with a brief description of each one. He glanced at the 2-sided notebook paper and looked at me like I had 3 heads. He didn’t have to say anything…the expression on his face said it all. He obviously thought it was in my head or I was a hypochondriac. He almost had me convinced it was depression even though I wasn’t depressed – just sick and tired of being sick and tired. We do not suffer alone. And I think everyone with fibromyalgia doubts themselves at some point. How can we not??

I echo Shelley’s comment about being grateful for this web site. It is a relief to come here and read about others that are going through the same thing that I am. I was diagnosed 11 years ago and was lucky enough to find a primary care giver who understands fibro. Unfortunately, her practice has become so huge now, it’s difficult to get in to see her and she doesn’t have the time for me when I’m there.

I also had to retire early and lost a good chunk of my children’s teenage years, while trying to sleep off the pain and fog. My husband divorced me two years later because of this and now I am on my own. I am constantly doubting this illness is real when I am feeling well and blaming myself for the loss of my job and my marriage.

It always comes back to remind me, though. Stay well all of you and fight the good fight.

Yes I had doubts but try not to. My daughter got married last week end so I knew it was going to be busy and not alot of sleep. So the week before I took it easy and thought I had it under control. She got married Saturday and what happens this past Monday I relaspe. And I tried real hard for it not to happen. So I know there is no control over this monster.

I agree with everyone. The worse is when people look at you and say, “well you look fine, you don’t look like there’s anything wrong”. If only they knew!

I have lost so much because of this illness, disease, syndrome, WHATEVER they call it! My career, my youngest child’s high school years, my marriage, which actually turned out to be a good thing. My husband left after a 32 year marriage, when I was no longer able to work. There’s a high quality person for you. It IS real, it DOES impact my life every single day, we DO have to stick together, help each other, and SPEAK UP about the devastating losses that accompany this illness.

The issue for new was disbelief from the UK National Health Service, and the dogmatic belief that my chronic fatigue was all in my mind. When the antidepressants and graded exercise were forced upon me, I became increasing worse rather rapidly. This caused me to become depressed, because the UK National Health Service were making me so ill. It was only when I used 100% private health care in the UK that the truth was revealed, bio-film protected chronic bacterial infection, and reactivated Herpes viral infection associated with Chicken Pox. Proof that I was ill, proof that it was not all in my mind, proof that the UK National Health Service were worse than useless.

I can relate to all of the above comments. Yesterday I had to run a few errands…made 4 stops, came home and laid on the couch and watched a movie. Felt tired and in pain…then I thought I shouldn’t feel so rotten because what I had done wasn’t all that excruciating. Oh yeah, right — I have fms and that’s why I feel lousy. The ADD aspect does interest me. I was a special ed teacher (until I had to retire after two assaults and major job-related stress), and as of late I have felt very “antsy” even more so that the usual fibro fog. I’ve been in a flare mode since June and am looking forward to a remission period.

I feel the same way that some of these people fill. People look @ you dumb when you are filing for disability. They act nothing is wrong w/you. I pray that God will perform a miracle for this stuff one day. My pain is already getting worse w/this change in weather. I will pray for all of you and pray for me as well. Thanks!!

I agree totally with all of the previous comments.I’m from the UK and I don’t know if its alot different over there, but my doctor seems to not care and act as if I’m wasting his time (I wonder if he’d put up with it for 5 YEARS!).

I don’t know how long u’ve all had this “disease” but its not actually the symtoms that are the main problem, its having to explain myself to every Tom Dick Harry and thier dog, and defend why I’m still not working, and most of the explaining is to my own family and friends.

I would love to be working and have a life. I have a degree and wanted make something of myself, but I feel that that’s never going to happen.I can’t seem to even try to work from home as a real job, becuase its too complicated with my benefits (I’d like to do work, as and when I’m well, but I’d lose some of my housing benefits going off and on them) and can’t try to do a real job becuase not only do I have ME/fybro to deal with, but bad IBS. I’d have risk having an accident on the way to work unless I lived on immodium (diahorea tabs) which has to be bad 4u, plus lucozade and painkillers just in order to get through the day.Plus I can’t stand for long or deal with stress or exercise and have good days and bad days/weeks (in the winter).Who would employ that, and what on earth type of job could I do!

I dread the winter an get accussed of looking like a nutter because I use so much antibacterial hand stuff to protect me from germs (how would they like to be in a constant state of flu like fog and exhuastion all winter? I think think they’d try to prevent it as much as poss RIGHT?). Plus now we have swine flu to deal with (I haven’t had it yet and hope that if I do, I’ll be able get tamiflu to help.I’m very dubious about vaccination, and my doc won’t let me have the normal flu jab so I expect I won’t get this one unless I pay for it myself).

What makes it all worse for me is that the reason I believe I have my conditions is due to work stress in the first place (I worked in a horribly stressfull call centre). I was i’ll from day 1, but what do u do, u need a job, and I was too exhausted on my time off too even think about going for interviews etc and too over qualified for the jobs I seemed to be applying for, so there never was much of another option for me as I kept failing my driving test which didn’t help me get “better jobs”.

Doctors don’t seem to care even when u try to ask for help and mention new drugs and stuff.No one seems to care. I think, and they mostly think its depression.

NEWSFLASH, its not DEPRESSION! I have a degree in Psychology and I know for a fact that it is not depression. I would love to be able not to have to lay down when I’m i’ll and I am a person who actively tries to find an answer and a way out when I feel depressed, but when u’r exhausted and can’t carry on, U CAN’T CARRY ON! and no matter how much u try nothing seems to work especially if I force myself, I feel worse. Addimittedly this does make u not want to try but u have to work at your own pace I think and listen to your body and fade out people who don’t/won’t understand your problems. I’ve even tried cognitive therapy, but they struck me off before I could finish it. Deep breathing does not stop u from having an accident in your pants and what exactly am I supposed to do, do it all day! ( I have trouble after everything I eat).

I have learned from a nutitionist however, that vits are important and I was laking (BUT THEY CAN AFFECT YOUR TUMMY).

Also,the one BIG thing I did learn is having structure to your day and getting up or (awake on/in my bed if ill) does build your body clock better. Although I don’t have trouble sleeping as some of u do. And also keeping warm in winter and cool in summer (especially winter nights, I nead my radiator on, or I wake really ill).

My days have to run to millitary precision if I want to go out early moring.Bed early, vits and supps, get up 2-3hrs early to come round and use the loo and take tum tabs and make sure I eat ( I think I have hyopoglycemia too- does anyone else?) every 2hrs. And finally make sure I take food vit and drinks/tabs,decaff and pep tea, enough immodium and painkillers to live on, and spare knickers with me when I go out.Then, if I make it out (usually it ends up I have a bad day and wake up ill and can’t go/have to cancel), I hope for the best and, hold onto things, walk like an 80year old/sit down and try to close my mouth if my fybro pain makes me look like a nutter. What alot to do for 1 day/couple of hours out.

I personally believe that the only people who recover from this illness quickly are those with understanding family and friends and lots of money for alternative therapies like the “lightning process”. I beleive my problems are due to stress, nutrition and over over/exercise?

I wonder if I’ll ever get a job.You can only hope and keep taking 1 day at a time. Yoga,vits and supps (cats claw,omegas,chromium) and exercising in short bursts with quiet exercise in between (sit ups then vigorous,then sit ups…) or just going for walks helps me, but I still can’t do energetic stuff for more than 10mins at a time and find cleaning takes me all day! And makes me ill.

I hope that next year I’ll be better and can get a life but I’ve been doin that for 5 years. I just hope it isn’t 10 becuase because I’m going to be 40 in 2 years and don’t want to be ill then. I just think its unfair that we are not given the help we need by doctors and they don’t seem to care .And also, when we put on weight becuase of lack of exercise we’re ridiculed for it and even told by a NEUROLOGIST that being fat is the main reason for my illnesss! (I broke down crying and the nurse thought that he’d abused me!, stupid man!!!)

If anyone has tried alternative therapy that worked I’d love to know what it was.

I’m just glad we have an NHS free health care in my country which has helped sumwhat, at least in letting me know I didn’t have bowel cancer anyway.

We just have to keep on trying unfortunately.But the one thing I don’t do when people understand, is put up and shut up becuase at the end of the day we do have an illness and I don’t beleive anyone should be mocked for having a health condition. A friend of mine tells people she has a bad back instead. I suppose thats a good tip, but in my book, we shouldn’t have to lie.

I firmly believe I have had Fibromyalgia since I was a child. I can remember hanging onto the kitchen sink with my elbows to wash dishes when I was 12. I would be in severe pain for days, then it would go away for sometimes weeks. I tried once to tell my mother, but as an abused youngster, I had no credibility. These episodes of pain, then no pain continued for another 43 years before I was diagnosed with Fibromyalgia, and Chronic fatigue in 2003. Using the computer to find information about these syndromes I found myself smack in the middle of a Fibromyalgia chat session. I had no idea anyone knew I was on board, when someone asked, “what kind of name is Mape?” I ignored that not realizing that my user name MaPeavy was abrieviated to Mape. A woman sent me a private message telling me I should respond, confused? embarrassed? I simply left. When I had had a minute to figure out what was going on, I went back in to explain my behavior. The woman who sent the message had also asked the question. Rhiannon. Rhiannon was my soul sister, after several months she and I built a forum offering support to people who were acting as caretakers for those with chronic illnesses. She was much sicker than I was, with multiple physical and personal issues. My darling sister effectively took her own life by deliberately having a tooth pulled without telling the dentist she needed antibiotics. She developed an infection in her heart that could not be stopped. She was in a wheelchair, and we both knew her time to leave was arriving quickly. On impulse I asked her one evening if she ever felt as if she could stand and walk if she really tried? She replied, Shari everyday I think if I just tried hard enough I could make this go away. She died the next day. Since her death I have been DX’d with Parkinson’s Disease, End Stage Kidney Disease, Anemia, Malnutrition, Myoclonic Jerks, and I aspirate so easily, I eat nothing larger than a 1/4 inch square. I have relinquished my driver’s license, I use a walker in the house and a scooter away from home. Everyday as I sit here in bed working on my father’s family genealogy, I question if I could not be up and about, a productive individual again if I would just try.

I am going thru a flare right now. Everytime it happens I doubt my pain – how can I feel so much pain, confusion, tired, you know the rest. I get angry at myself. I forget how bad it was in the beginning. I have so many more good days than I used to but it is still so hard. My husband is wonderful – he understands, sometimes more then I do, about letting go and coping with fibro.

most people, including alot of doctors think we are hypocondriacs. Sometimes I get to feeling a little better and think I’m not doing enough in my life, not enough living in all aspects. Because I have learned to function alot less. I gave up my work, and most responsibilities that I can’t deal with. But then if I do try to do very much physically and or mentally, I am sick with malaise and low grade temp. However, it has been 3 1/2 years since I got very sick, and I am not as sickly as I was the first year. Again, I think the limits I have set on myself physically and mentally, keep me from feeling like I’m so sick as in the beginning. Sometimes I will get an excruciating pain in my head, or some other awful symptom that I got that first year of sickness, and I am very scared of getting just as sick as the first year. I wish I could push this cruel illness away but I can’t, because, as we all know, if we push ourselfs too much we crash.

why would anyone ever suggest that we may question the fact that we have some terrible disease or illness – no I never question the fact that I am ill – lets not put any more questions in the nay sayers minds- it is hard enough to cope with that as it is.

I thought I was doing so well, having good days, doubting if I was really sick. Then I went out and spent an hour or so with a group of friends, had some lunch, went home, had a late night and the next day…..CRASH!!! All I want to do is eat and sleep!! It is definitely NOT depression, or I should have felt a lot better for my time out. I am trying to treat myself like someone who has come down with the flu. NEED rest. NEED sleep. NEED good food. NEED support. For everyone out there suffering, my heart goes out to you.

Its hard just putting one foot in front of the other one. I’m in a flare myself and everything hurts. Even my head and that doesn’t usually happen. Anyway I’m glad for this site as well. I’ve been a member well…inactive member of another one for years but I just might start going along with yall

This is my typical thoughts of a day:(I hope this is what you are asking)
I believe that I’ve had fibrimyalgia since I was a teenager. When they first dx me with fibro I didn’t want to believe it. I had been dx and treated for lupus for serveral years and for me to go to another doctor and they say “no, it’s fibromyalgia”, I thought they was trying to down play my pain. It’s been at least 3-4 yrs. since then and I am still learning so much more about this hell I am forced to live! I get so mad at my family when they say they have told me things and I can’t remember them. I beat my self up about it b/c I ‘ve always had a good memorie. I can’t express the words that I am thinking and I feel so dumb at times. People look at me funny when I can’t get out simple words, so I think! I go to the doctors and (to me)I feel like she doesn’t believ what my pain is and how it moves constantly. I ask for more meds to gain some relief(hopefully) and she tells me no, the oxycotin 20mg. 3x a day and neurontin should be enough. But it isn’t! My home is a mess and I stay in my room most days so I won’t see it and cry! I am so physically tired and exuasted that I think for death daily and would probally choose it if I wasn’t scared of going tp Hell for suicide. I can’t even get the strength or the desire to try to clean up. i go down strairs and try to wash the dishes and while standing there I am in so much pain! My friends really don’t want to deal with me anymore b/c I don’t feel like doing the things I use too. I can’t even walk to the store to get something to eat or drink when I am hungry or thirsty I just have to sit there and suffer until I can find someone to go for me! I am tired of argueing with my family about cleaning the house or cooking dinner. My family doesn’t understand my pain and sometimes down plays it! They don’t understand my fustration and sometimes down paly it. They tell me that I am faking and I use my illness as an excuse to be lazy sometimes. I feel like I am a failure and a burden most of the time! I feel alone and defeated and see no way out of this black hole most of the time! I want to spend time with my grand hildren but can’t b/c I get depressed or I am in pain most of the time! I ask for help with different things and feel like no one wants to help me most of the time! I can’t make up my mind to do things or to finish things most of the time! I cry all night long form the pain at least 5 times a week. I only get amybe 2 or 3 hours of sleep a nigth and then it’s back to the pain. I am sheltered and alone most of the time. I can’t really enjoy making love to my husband with out servere pain. I can’t take a walk with my husband without physical pain. When I am in pain and my husband tries to hold me he can’t b/c of it makes it more painful. I can’t express my self to my family b/c They don’t really hear me or they don’t believe me. I pray and pray and pray and I feel like God is ignoring me, most of the time. My sheets hurt me nightly and I am up padding my side of the bed multiple times a night trying to find one that my body can tolerate, at least 5 times a night. I keep my husband up at night tosing and turning at night. I keep my husband up at night turning back on the t.v. after laying ther 2-3 hrs. at night. I have to hear husband complain about me keeping him up at night at least 5-6 times a week. People don’t belive me when I say I can’t do that b/c of my disability. I feel like I ma being punished for something by God! I need help! Daily, I cry and wish I could jsut get it over with. I feel hopeless! I feel scared! I am not as strong as I use to be! I have lost my independence!

I so relate to most of the comments left here. The one thing I think is so important for people like us sleep. It helps so much with all of the symptoms but especially the Fibrofog which is all too real. I take Nuerontin every day and it has been a God-send. I am able to sleep and still be awake and alert during the day. I split mine up into five doses starting on rising and ending an hour and a half before I want to go to sleep. I take 600 mg. five times a day. I know. This dose would knock many people who don’t have our problems right out. I worked up slowly and it helps so much with sleep and pain that I wish that everyone who has Fibro/CFS would try it. I also take Klonopin at night, Remeron (an antidepressant) and Skelaxin to prevent the muscle cramps that used to wake me out of a sound sleep. Everyone is different and this exact regime may not work for everyone but I hope that you all will continue to seek out a Doctor that really wants to help you and senses your urgency and the treatments that will work for you. I cannot believe that I am better at age 63 than I was ten years ago when I first became acute. We all deserve the best treatment we can get but we need to realize we deserve it! Good luck to all!

Fran – I am sooo proud of you! I think you should try to make it to your retirement, as hard as it will be. You’ll feel such a sense of accomplishment (which is a blessing with this condition!) and look back and probably be glad you did. Plus the benefits. I know you didn’t ask for anyone’s opinion, so please forgive me if I’m out of line. But I just wanted you to know that I admire you for sticking with your job. It’s hard to work despite the pain, so I really look up to those who do. You go girl!

I have never once doubted that I was ill. The pain variates daily so now and then the symptoms are new or at least “different”. Season changes are the worst. All I have to do if I start to wonder if this is real is look back on my life before fibromyalgia and cfs happened to me. I had a great job which I no longer have, had to drop out of school and have to remind myself that sometimes bad things happen to good people that you cannot explain. One thing I know to be true, those of us who suffer from fibro/cfs are tough and very brave! BLESS YOU ALL and let’s keep praying for medical break throughs and treatment!!!

Well, some of you got a little off the subject..but I guess we all need to vent, eh? First off, when my doctor told me he thought I had fibromyalgia, I thought he was the crazy one. I did not believe it. Then I did alot of research on this thing I had never heard of and it was as if I was reading about myself. All the symptoms were me “up one side and down the other”…literally. That was over 15 years ago. And to this day I still wonder…do I really, REALLY have fibromyalgia?? Maybe I am just a weakling and a whiner and I am one of the people who actually COMPLAIN about my aches and pains. Maybe everybody feels this way, but they just don’t say anything? I have even asked people if they have pain here, there and everywhere. And when they answer, “No” I am amazed. I can’t imagine it…having no pain. Well, bottom line I do believe I have it mainly because of the symptoms I have. They are so classic fibromyalgia. Also when my legs started to hurt so bad for no apparent reason that I had to use a cane (at the age of 49) to get up from a seated position..surely that is not normal!! Then after about six months and taking Cymbalta (among other things)..it went away as mysteriously as it came on. So..I do believe I have it, but it has taken a long time and alot of reading and learning to accept it. And as I said earlier, still I have that nagging little doubt in the back of my mind…do I really…?

Hi. To all. Because of you I have been able to do something I rarely do. I read your stories and I quietly cried, I kept reading tears flowing . Oh! the relief to find others like me ,
Your stories are my stories . Many times I have doubted my health problems since 1993 . The doubt comes not from me but like you all by others Drs saying it was depression . Family . neighbours. there attitude is not positive its negative , It effects us , we think maybe there right.
Its soul destroying and its not right. were going thru enough without being emotionally tortured.
We need support, kindness,respect,a smile, understanding and to be believed.This is healing.
One day the truth will come out and many will be ashamed.
I feel ashamed because I am ill ,I have told neighbors I have an exhaustive disease chronic. I get no understanding , Ive gotten anger rejection cold looks. Theyre annoyed at me. I have been given the 3rd degree . What do you do all day? Ive heard neighbors disgussing me.
I Feel I have explained myself .I wasnt expecting the abuse I got, the putdowns. And the years have gone by and I,m still the same. I am so lonely . Its hard because I was a people person , I was involved in si ngle social groups for 10 yrs also councelling, my aim was to bring healing to the hurting and a social life to the shy and lonely.I used to be such a bright happy person who despite having spinal problems pressed on and found the above so that I still had meaning in my life, It gave me self esteem. I was respected.
Then I got E.B.V. I feel like Ive got the flu all the time plus repeated tonsilitis. since 93 . I was dia. with fibromyalgia I thought it was just muscle pain and didnt look into it ,thought it would go away. 95 another clinic who spec. in cfs dia. me with cfs /me .at last a Dr who believed.
I joined a support gp. it had to shut down. Now I am to ill to go to another or reach it. I have had to let my car go I use a walker in home and I use a scooter . My spinal problems are worse and joint s. Shopping walking is agony I also have sciatica. The scooter was for those reasons but to my delight it helps with the f/m , and Im able to get out of the house and see people and they are friendly and see i have a mobility problem , I am treated with positivity and we need it. Its like a hug.I have something to look forward to now . So I encourage you if you can get one , get it . You do need it.
Re. Depression . one of my friends is a councellor and he has encouraged me with this. A person who is depressed does not want to get involved in life, he said you are ill . You want to do things in life but cant. You are not depressed, but because you are ill and do not have yr normal life , the normal reaction is to feel down.
I hope this helps all of you who read this.
What I do also is praise myself even if its little things , we need to feel proud of ourselves . We are not failures we are ill , we are limited.
Like Shari (mape) I lie on my couch with my laptop doing family history at my pace .I use Picasa and am organizing Family photos restore and repair with picasa and I download photos onto C/d and when Ive finished will put them onto dvd. I have found cousins in the U.k I live in Australia . Im in contact with a cousin in Rio and N.Z and we are all History Hunters and we share photos and its been so exciting. MY LIFE STILL HAS WORTH. No one can take that away from me. I feel proud of what I am doing. I also write poetry , I will be sharing one when able.
I am proud of you all. You are o.k. You are just ill. It has been wonderful talking to you all , we are the same. I think my letter will be long , sorry. Its such a relief to open my heart and share my heartbreak as you have with me. My sister says i have insomnia to all . she doesnt tell people what I have . She has medical problems I understand and care. I cant share with her God it hurts. This is the first time I have shared all.
I will now shut up Ha!ha! and if I could I would give you all a hug . Look forward to hearing back from anyone. This site , this year told me what f/m was .and you all told me how you feel how you are effected and it was me. I have been helped Big thank You. Look after yrselves . Please share what country you are from . In Rio people are being helped. All the best sooz oxo

I rarely doubt my illness.

However, it took me a long time realize I HAD an illness. My health has been in slowly deteriorating with CFS/FM symptoms since I was about 16 (I’m 35 now). It took me years and years to realize “What? You mean most people AREN’T in pain all the time? No wonder they can get so much accomplished!”

Yep I doubt myself all the time but it doesn’t help when the doctors make you feel that it’s all in your head, or say things such as “this pain is never going to go, but it’s also not going to cause you any long term damage so you have learn how to live with it and try to ignore it”

The anxiety is very firghtening, and the low mood, it doesn;t help that I’m always tired, and get all my words jumbled, or say the wrong thing completely.

My doc sent me to a pain clinic, I was so looking forward to getting some injections or something to numb the pain, but they wanted to send me to the other end of the country for a month of reabilitation, to teach me to live with this.

I almost passed out with an anxiety attack at the thought of it, the thought of not having my home, or the reassurance of my family around me and being so far away from home.

I don’t often have times of remission, but when they said that to me it’s knocked me off my feet completely, and that was a couple of months ago

Sadly I can relate to the feelings shared here. My symptoms came on suddenly about 10 years ago and hit hard in my late twenties. I could not believe the degree of pain I was experiencing and thought that I must be dying or that I had developed cancer. It felt like every cell in my body was in a battle and the fatique was so severe that all I could do was lay on the couch.

After ruling out a series of other conditions, the doctor told me that she thought I had fibromyalgia. All of a sudden, life as I knew it no longer existed. I went from feeling fine to being exhausted by the most mundane of tasks, such as carrying groceries to the car. ..And in spite of all of this, all they could do was rule out other conditions and tell me that they thought I had fibromyalgia.

With this new condition, I quickly learned how important it was to have a balance of rest and work. Not long after I was “diagnosed” however, my work required that I travel out of state for the weekend to help host a seriesm of public outreach events. I requested 1 day off after one of the events to recooperate, and was denied the time off. I then made the mistake of sharing with my supervisor that my doctor thought I had developed fibromyalgia and that it was important for me to have some down time. I’ll never forget the way she looked at me…as if I was making up a fake condition. I have always been a hard worker and have never abused sick leave, but I was told I would need to go to HR because special accommodations would need to be made for me because no one else would be permitted a day off. I was devastated. After over a year of struggling with pain and trying to smile and get thru the day to day activities of life, I could not even get the smallest amount of consideration or understanding.

I still struggle with a degree of discomfort everyday and painful flare-ups, although I’ve learned to manage the condition better. Unfortunately, I’ve also learned that this is a condition that I have to hide and feel ashamed about. On those rare ocassions that I have to call off from work due to the fibro, I never mention the condition by name. I hope one day there will be a definitive test to diagnose this condition – other then examining the various pressure points.