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...
This is my first time posting so hello everyone:)
I was diagnosed with Crohn's about 10 years ago and then CFS joined the party about 5 years later. Not the kind of fun I dreamed of having in my life that's for sure. I've tried so hard to stay positive and find the silver linings along the way, but I find myself drowning in the loneliness and isolation both these diseases cause. I feel like I'm always on the outside looking in. I'm watching my life go by from the couch wondering when will my turn come? Will I ever live a full life or will I be forever on the sidelines watching and wishing for more?
Does anyone else struggle with loneliness? How do you cope? I'm grateful for any advise anyone has. Thanks for "listening"!
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Ever since I stopped doing therapy because of insurance, I've been feeling that old tense and irritable sense of anxiety and stress. I hate that. I was making so many strides and changes during therapy, my therapist would acknowledge all of my progress and accomplishments, and I miss that reassurance. Today I thought about it, and I made those changes! She would always tell me that I chose to...
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I'm horrified! I knew my insurance would go up due to getting a new car but I didn't expect it to go up over $2,000. I did have an accident with the snow/ice in the winter. I was just telling my brother that I have had my car since March 2, 2026 and have only spent $75 on an oil change. Now this! I called another insurance company and their quote was over $4,000. I guess I have to pay...
Glad you joined us here. While I can't speak of Crohn's disease, I was diagnosed with CFS when I was 22 years old (I'm in my 50's now). I felt like it robbed my life, being struck down at only 22. Had to quit working almost immediately due to the intense fatigue (was on my way to a great career at the time) and it was not a good time back then. Back then, no one even knew what it was, what it was called, or what to do about it. I went to so many doctors before getting a diagnosis.
But, you have to go on.... (and you can too!). I finally found doctors who are very knowledgeable about CFS. Is your doctor very knowledgeable on it? They can try some different treatments on you, depending on your symptoms and results of your blood work.
Because I have had this for 30 years, I learned to live with it. I know I have X amount of energy per day, and that's all I can do for that day, and then I'll need to sleep a lot the next day. Oh and I drink a lot of coffee every day for energy! LoL.
Find a doctor who knows a lot about it. Get plenty of sleep. You can and will have a "normal" life. It helps to have supportive people around you.... do you have family, friends, that understand?
You are not alone. You will learn to live with it and you will adjust to it. It is not fair and it is hard. But we have it, so we have to make the most of it and go on and live our lives, best we can. It is hard, I know. I try to think that it could be worse, and be grateful for not having a terminal disease like cancer... etc. Try your best to keep a positive attitude and to have things in your life that bring you joy.
You are going to be okay. Wallowing in it is understandable, I did it too. But, time to pick yourself up and get to that doctor, and find some treatments and go live your life! You can do it!!
Can I ask what kind of doctor you see? I used to see a rheumatologist for the CFS, but she retired. She helped with pain management, I get a lot of nerve, muscle and joint pain with this, though Crohn’s contributes to some of that too. She also treated me for insomnia (possibly the most ironic symptom of this disease! Lol!) She treated my symptoms but didn’t give me a lot of hope for improvement. Maybe I was seeing the wrong type of specialist.
Again thank you for your advise and encouragement!!
If you are in the U.S., try this link
https://doctor.webmd.com/find-a-doctor/condition/chronic-fatigue-syndrome
Did a rheumatologist help your symptoms? Do you see one now?
What are your main symptoms?
It isn't fair that we have these things! But, it could always be worse. Most people have *something* wrong with them. Just the way human bodies work. I understand how you feel, but what else can we do but to keep going and keep living our life. And searching for a doctor could be tiring, but no one is going to help us, except for helping ourselves. Like I said, it isn't fair.
You can write me, any time. I am here for you!
Like GirlinCaif, I'm in my 50s and I've had CFS over 30 years. Unlike her, I haven't managed to find a doctor who knows anything much about it. I've had to work things out by myself and by talking to other people with it.
My first 5 or so years were hard. I had to leave my job and find a new one with part time hours that was far less physically demanding. I gradually learned to recognize my warning signs and manage my time and energy. After that I was able to move to a more demanding (and fulfilling) job.
I was able to live a basically normal life for 12 years with just a little caution. Unfortunately, some very stressful and drawn out things happened that tipped me over the edge again and my CFS got to the point where I have been basically housebound for the last few years.
I can definitely relate to your loneliness and isolation. It took me a long time and help from more than one counsellor to deal with the grief of the long series of losses of everything I'd been able to do and expected my life to become. That isn't to say that I'm completely over it. I still go through times when it hits me again. That's the thing with grief, it never completely goes away and you revisit it to various degrees from time to time.
As for coping with the loneliness, my computer has been a big help. I now keep contact with family through Facebook and have joined a couple of online CFS support groups. Other than that, I am a writer in the sense that I love to write and have been slowly working on something in hopes of becoming a published author. That gives me something to aim for.
I used to do foster care and continue to support two of the kids who have become like my own. Their parents are both dead and I try to be as much of a surrogate parent to them as I can. That helps give meaning to my life and a sense that I am still being useful.
As for the day to day management of loneliness, I use distraction mostly. I read a lot (when brain fog doesn't stop me). I watch lots of TV series (often borrowing DVD season sets from the library), movies and documentaries. I also browse the internet and play (not too brain intensive) computer games.
Other than that, I try to catch up with a few key people both for internet chats and in person when I can manage, which isn't all that often, as it takes a lot of my limited energy.
In conclusion (sorry if that makes this sound like an academic paper or something), if you haven't already done it, you might find CBT (talk therapy) helpful and finding something different from the goals of your old life to work on or aim for also helps. Otherwise, hang in there. It can be very tough at times but remember that your success rate for getting through the tough times has been 100%.
Newly diagnosed is both happy and sad. Happy to have answers, sad that while life changes. It's a very difficult adjustment and support is necessary! I didn't have ANY family support at all, and I lost all mu coworkers friends because I had to stop working. I lost regular friends too who didn't understand . I even lost my husband. Very quickly my life changed and I was ALONE. No kids, no family that was in my life or supportive, very few friends that I would actually get to see. I becMe severely depressed but this support group helped me so much. Just having people to talk to who understand is great. Then I found things I had in common other than four chronic illnesses, and it led to real friendships. I don't get to see them but we just figured out how to do long distance friendships.
I hope you are able to have a strong support system, whoever it may be, family. Friends, or us strangers here online. We care about you and we don't even know you yet, I'm sure I speak for all of us on here when I say welcome, glad you are here, not glad for the circumstances why you are here. We are here to listen and share and care