Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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kaliska 12/21/2015

No one off the internet understands. The side of the family I grew up with doesn't believe in being ill. I got yelled at and put down for not getting things done when I just wanted a break. For a good decade I just wanted a break. I finally walked out of college, quit talking to my mom and her family, and then got married and moved away. I've been in this house 2 years now. It took the first 4months just to adjust to the fact there is no one to yell at me. If I am tired I can lay down all I want. If my muscles feel too heavy to move I can do things later. There is no one to complain and yell about how lazy I am. My husband still doesn't understand though. When the light switch is 5' away and I comment on my headache but then still lay there without trying to get to the light. He still gets frustrated when he has to do those things and I can see why. I just want someone to understand why it is so hard and not that I'm lazy. The ER is mostly not worth going when I have any problem because I've been listed as hyperventilation syndrome which basically says hypochondriac with panic attacks. I am so frustrated with people telling me I am having panic attacks or asking what emotional problem is causing my hyperventilation.

triunfadora 12/21/2015

I hear you. This illness is so misunderstood. My mother-in-law used to call it "Chronic Laziness Syndrome." I'm not sure what it will take for people to understand it's a real illness. I am so sorry you have dealt with so much abuse over your illness. I understand what you mean about the ER. I have often had chest pain and issues that certainly warrant a trip to the ER, but I am hesitant to go because: 1--they can't fix it and 2--they assume it's in my head. You are in the right place here at DS. There is so much empathy here. I have been received with so much love and understanding. It has given me the strength to face up to those who don't understand me well. Come and take a long, deep drink from the waters of empathy and understanding you will find here. It's a long journey. You'll need to keep your strength up. Many blessings.

Nina1959 12/21/2015

Hello - Sorry you are still feeling misunderstood. It seems like you have taken some steps to make your life what it needs to be and what you want it to be so congratulations on that...
I wonder if you have been formally diagnosed with CFS? Please understand you are welcome here, it's just that there are other illnesses that have similar symptoms but for which there may be treatment help, like adrenal, thyroid, autoimmune, lyme, etc. We always encourage a complete work up because if you have something for which help is available no one wants you to presume you have CFS and not get the medical care you might be able to get and feel better!
wishing you peace

kaliska 12/21/2015

I have not been diagnosed. I have had a heck of a time finding a doctor in my new city. No one is taking new patients. I may have to drive back to my previous doctor and it will be a good month before that happens. I just figured this would be a good place to start until/unless someone actually diagnoses something else. Fibromyalgia is top of my list. My husband says I don't have enough pain for it. :/

triunfadora 12/21/2015

Well, this is a good place for you. We understand fibromyalgia, as many of us have that along with CFS. If you are too tired to handle it, then you are in the right place. Feel free to post anytime. I'm sorry your husband doubts the amount of pain you are in. Fibro pain can be off and on a bit, as well. So, there might be days when you are worse than others. That is part of the reason why people don't always get that we are truly ill. They think, "Well, if you did it yesterday, why can't you do it today?" But that's the nature of the beast. Some days are worse than others. It is hard to find a doctor who understands fatigue-based illnesses, but try your best to find a doctor who has some experience in this area. You will likely save yourself some grief if you do. Many blessings.

kaliska 12/21/2015

Well I complain about the headaches, I mention when I'm too tired/depressed/unmotivated, and I bring up my knees occasionally. I don't tell him that I don't want to go to the bathroom because right now I can barely tell my thighs to drag me up the stairs while I get out of breath just from the strain of ordering joints and muscles around rather than the actual exercise.

2DanceAgain 12/21/2015

Is you husband willing to read books or articles about this very misunderstood illness of ours? Have you seen a rheumatologist? That is the type of doctor that diagnosed me. An alternative nurse practitioner is my main health care provider that manages my symptoms with some western medicine prescriptions and lots of supplements.

RichieD 12/21/2015

I spent thousands of dollars to get my diagnosis, and it did me no good whatsoever. When I go for medical care anywhere, they totally ignore the ME/CFS diagnosis and "investigate" my ME/CFS symptoms as separate illnesses, just like they did before.

So you're probably not in worse shape by lacking a diagnosis. I doubt if it would change much.

kaliska 12/21/2015

My attempt for a diagnoses is because of the psychiatrist treating my insomnia with antidepressants and I found when I got a strong pain killer at the ER a couple days ago it was so much easier to function. I'd like to see if I can get some tramadol and hope it helps. I was given some before for back issues so maybe I can get it again from that doctor. Having a diagnoses of something might impact my insomnia treatment and get me pain medication. Although CFS is not as useful to get any type of treatment as having another illness with it so if they decide not to go any further than that I will probably just be sitting here in the same situation as if I never saw a doctor.

RichieD 12/21/2015

Tramadol is a synthetic opioid that avoids the reporting requirements of opiods like codeine. It has a reputation for some really nasty side effects, research it before you take it regularly.

Don't expect a doctor or pharmacist to know about negative side effects. In my experience, they know almost nothing about the drugs they prescribe.

kaliska 12/21/2015

I am taking seroquel (was 800mg), trazadone, amitriptyline, gabapentin, flurazepam and belsomra at once and was taking lamictal and temazepam so tramadol side effects are not really a concern in comparison. Of course all that crap does not help my daytime energy and alertness but take any of it out and in 2-4 days sleep deprivation will put me in the same spot.

lindasch100 12/21/2015

ah your family sounds like mine. I finally cut them off and it is much better to not have all those negative arrows shot at me. I was diagnosed 15 yrs ago by a neurologist (I have had CFS f 30 yrs). He was the first doctor who believed me. Also there is a growing number of doctors who specialize in CFS. you can find the list online. The neurologist does not help w all the million little symptoms, so now I see CONCIERGE doctor. That is a doctor that you pay a flat fee per month/yr (no insurance) and she/he spends whatever time you need. I see my doctor every six weeks for 45 minutes and she believes me. She pay attention to the small details, like adjusting my thyroid meds, changing my asthma inhaler, adding a medication to help w brain fog. Since she cannot fix the neurological, we focus on treating the symptoms. It helps a lot.
I hope you find a doctor.

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