Ahh, Stephie, welcome. I'm so sorry for all that you're facing/going through. I have CFS/SEID as well as bi-polar, depression and arthritis in my lumbar and cervical regions. I'm so glad you found your way here, this is a safe place full of really caring people who already know what it's like to live with CFS/SEID and other chronic illnesses.

Chronic illnesses are real and not just you. Your first step is to realize that YOU'RE NOT A BAD PERSON, YOU DID NOTHING WRONG, YOU ARE NOT BEING PUNISHED. You 'just' (just, hah!) have chronic illnesses that demand that you take them into account in your life.

*I* would also say that until you give yourself the REST you need for me that was on the couch but for bathroom breaks, sleeping 12 to 18 hours a day for months you won't start to feel better. I can't speak to disc degenerative disease, hip dysplasia, or anxiety, but I know that everything is worse when you're exhausted and drained, and you can't fight off a flu germ in a full-body cast with a walker.

You have to put yourself FIRST. You only have one job now and that's to take care of yourself, honor your body's needs, because it's in charge now, and figure out how to do more of what makes you feel better and less of what makes you feel worse.

Come back often, dear. The people here are great sources of information, inspiration and hope.

Blessed Be, Stephie...
Jack

Hi, I really understand where you are coming from. It is so exasperating to go through tests and countless appointments only to hear that there is nothing they can do for you. It does make you start to think you must be crazy or something, but that is just not true. It's a real disease and you are not crazy or lazy. Some people around you may not understand your diagnosis and they may think you are lazy and crazy, but don't believe them. It is simply not true. I agree with what Jack said. You have to take care of yourself. You will go through a time of grieving what you have lost. Acceptance doesn't come overnight. And acceptance doesn't mean that you stop trying to get better. There is no cure, but there are ways that you can make your life better. Rest and pacing are really big keys. I get bronchitis a lot too. Our immune system is compromised. I take Airborne or other immune supports. We are here for you. I know you are young and you don't want to have to face this. It isn't fair, but I'm coming to believe that we all have some big trial to face in life. I don't know where you stand on spiritual issues, but I have found faith to be of help to me as I seek strength beyond myself to face each day. Post any time you would like. You are very welcome with us. Many blessings.

HI, glad you found us. - Acceptance is so hard, and it's a constant process. But try not to give up, you can live with this - some days will be better than others. I wonder if the stress of being in a busy office might be a bit too much, the cortisol just really kicks our butts. If your skills translate to a more mellow workplace, it would be a good thing, or even working at home if you have the skills to perhaps be a medical biller, or something like that...
If you can get into some warm water several times a week, a therapy pool or even just long baths...it can be very healing on many levels.
Wishing you peace

Adding to what Nina and Tri have said, I've found a great deal of relief giving and accepting help and support here. I come from a spiritual place too, but it's not required. The giving and receiving support and the faith just make me feel better.

Aaaand, I just wanted to suggest Epsom salts in that warm bath, unless that doesn't work out for you... Nina? Any guidance here?

Welcome, Stephie.

I pretty much agree with what everyone said, although for myself the resting didn't help me much...I just got all deconditioned and weak.

I'd better not say much about doctors, I'm personally really fed up with the quacks who throw up their hands because they never bothered to "do their homework" on our illness. The statement that there's "nothing that can be done" for ME/CFS is completely false. What is true is that chronic illnesses are not moneymakers like cancer, so doctors tend to avoid treating patients whose maladies are chronic.

That said, finding a competent physician these days to treat any chronic illness can take years. I've given up on that myself...I don't have the income to go hunting through the yellow pages with dozens of appointments.

I also have a variety of illnesses...comorbid conditions is the medical term...like asthma, possibly lupus, depression, PTSD, severe sinus problems, chronic bronchitis, etc. Doctors don't want to deal with any of this...beyond writing a scrip for antibiotics that do absolutely nothing to help.

We definitely need our rest, lots of it. But sitting around all the time tears me up. I try to stay as active as I can for part of each day. You really have to accept your illness and learn to pace yourself. Denial and plugging away regardless will not work. Nothing about ME/CFS aka SEID is easy.

Just wanted to say hi and welcome. You're in the right place for support.

Becoming suddenly ill with a chronic illness leaves you feeling helpless, especially when it's a disease that is not well understood or accepted. Even the name is confusing; first they called it CFS, then ME, now SEID.

I have CFS and Fibromyalgia.

Thank you all for showing your support sometimes it just helps hearing I'm not alone. I think for me it's hard for me to accept this since I've been told so many times that I've been figured out to just find out later it wasn't correct.

Just a historical note...as best I can determine, this illness was first called neurasthenia, then ME or myalgic encephalomyelitis, then CFS, then NEIDS or neuroimmune dysfunction syndrome. Also in that timeline somewhere was CFIDS or chronic fatigue and immune dysfunction syndrome and NK cell deficiency (Japan).

Now the Institute of Medicine wants to call us SEID or systemic exercise intolerance disease. I like myalgic encephalomyelitis or ME, it's been called that on the World Health Organization's list of diseases since the 1960's. But of course I'm just a patient, who listens to nobodies like us? ME/CFS is the most common name currently being used by the research community around the world, CFS is mostly just in the US.

"A rose by any other name would smell as sweet"...William Shakespeare, I think.

Yep, CFS by any other name would stink just as badly. I just wish they would put some effort into helping us.

Welcome Stephanie, I'm sorry you're struggling right now...this illness just stinks :(

I have quite a bit of anxiety, or did...I work on it. Stress and anxiety take a huge amount of energy...blech.

For quite some time, I thought it's in my head, it's all 'me' etc because pre existing depression...well, my depression is in remission, ugh, I still am exhausted.

Sorry to go on...but it really isn't in your head. With the others I recommend rest and removing stress.

Warm hugs and welcome x

I have to take things one day at a time..it helps me control my anxiety.i have alot of anxiety and it gets worse when my fatigue gets worse.i think its because i start to feel so powerless and helpless.i think about everything that needs to be done and that I cant do.I'm working on acceptance.For me acceptance is saying'look here's what I've got and theres only so much I can do about it.I'm not going to be hard on myself or angry at something i cant control,but i will do everything i can to feel better"..some days are better than others.
Drs make me angry and just so frustrated.Its like half the time they dont belive i feel as sick as i do and throw around the depression word like its an insult.Its not an insult but somehow they make me feel like it is.
Other times drs would give me a diagnosis,only to take it away a year later by some specialist that didnt agree.I also have cervial disk disease.Its no fun to be in pain on top of the fatigue.
Advice from me would be to take good care of yourself and slow it down if possible.give yourself compassion the way you would a family member or close friend that was going through the same thing.Sometimes i have setbacks,but when i feel better i get back up and try again.thats all we can do.hugs xx

I am trying hard to accept this for what it is and the limitations that goo along with it. Your support has been wonderful. Right now I'm also trying to battle depression that has flared up because of being so overly tired. I can sleep hard for hours and wake up feeling like I just went to bed. I almost feel like my body is shutting down on me. Everything feels like I've been bar with a base ball bat. Is it common to feel like you're joints are swelled? I'm thinking of seeing one more specialist infectious disease to see if something else was missed on top of cfs. I just have this feeling that something isn't right. I'm not sure if it's from feeling so drained but I'm forgetting a lot of stuff that is starting to scare me. I can't even remember people's name including my mom's.

When I first got sick with CFS an experienced CFS person told me to get Doxepin. My infectious disease doctor who specialized in CFS agreed and gave me a prescription because it gives deep sleep. It is not a sleep medication but an old tricyclic antidepressant. Not only did it give me good sleep but after a few weeks I felt quite cheerful, I did get an antidepressant boost.

I'm still taking it, I only take about 40 mg when a minimum dose is 70 mg, so it doesn't take much. It really helped my initial insomnia, plus helped me feel better. Later a neurologist told me it was good for the immune system and recently a dermatologist wanted to prescribe it to me for itchiness.

It's been around for decades with no bad side effects, just start at a very low dose or it will knock you out.

This could help your current situation.....

It's very important to know what quality of sleep you are getting. Best to see a sleep specialist, have a sleep study, and see if you are getting the deepest levels of sleep. If not, you never feel really rested. I use Xyrem to sleep. It knocks me out. and then I use a vpap machine for sleep apnea, I have both central and regular. (forgot the name).

This is a long, long, road and you need to find the best drs. available and listen to them. This illness alone causes us anxiety and depression. Get good HELP! life is long and feels longer with fibro.

Itchiness, huh? That's good to know. I've been getting these weird, random itchy spots that seem to just appear without any apparent reason. I'm using 1% hydrocortisone cream and Benedryl when it gets bad. My PCP, who doesn't take CFS seriously, declined to refer me to an allergist. He said they run a bunch of tests, only to find out I was allergic to something(s) unavoidable. He recommended Claritin or Zyrtec over Benedryl as they didn't cause as much sleepiness.

I'd get a new doc, but I'll be getting one soon when I move anyway...