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Chronic Fatigue Syndrome
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Posted 12/5/2012 3:33 PM (GMT -7)
Hello, everyone. I finally decided to seek out a forum because I could use the support and interaction with a community of people who understand.

I'm not sure if I have CFS, but I've have been having health problems for roughly a year and a half, maybe more. I've had lots of blood tests, allergy tests, MRIs, a CT scan, x-rays, an EEG, and more. Still no real answers. One doctor thinks it's CFS. I've taken a break from doctors for now as the thought of another round of this is just overwhelming.

I'm only in my early twenties. Before all this, I was athletic. I was a gymnast and a circus performer. I have a 4.0 GPA after three years of college. I had a job, friends, a boyfriend I loved, and a future. I don't really have any of those things anymore, and many of them I worked very hard for.

I think my breaking point in joining this forum was a few days ago when the one person I thought understood how hard things have been and cared about my problems revealed his true thoughts and responded to my health problems by saying, "Boo ******* hoo." (Sorry, I hope it's not inappropriate in the forum if I use asterisks to replace a certain rude word. Wouldn't want to be kicked out on my first post!)

Anyway, I hope to find more understanding people here, and I hope to be here to support others once I get a little more acquainted.
Posted 12/5/2012 10:06 PM (GMT -7)
Flipped, hi & welcome to the forum, I am sorry for the reason you are joining. I can so understand being done with doctors for awhile. I once took a break from them before I got my diagnosis. Having test after test & finding nothing can be so frustrating, I just didn't want to spend another minute doing that. I took a break for about 6 months & then went back & got my dx's.

It is so hard to give up life as we have known it to be. To go from energetic, working, taking care of family, house, yard & gardens to "nothing". Laying on the couch unable to move, bartering with myself over making dinner or doing dishes & feeling so depressed that no one understands or believes me. It is a hard time with any chronic illness. Giving up so much is sad & I am so sorry you have to go through this. I am sorry your loved one doesn't understand, my husband never understood but he tried to support me, he died 3 years ago. With pacing & time, I have come to terms with this illness. Not happy about it by any means, lol, but not angry anymore. I had to quit my job that I really loved & am now on SSD so my life is simple & easy. Take care of yourself, I look forward to your future posts. Many gentle hugs, Denise
Posted 12/7/2012 1:12 AM (GMT -7)
Thank you for the welcome and kind words, Denise. I'm glad you got a diagnosis on your second round. I hear about so many people not getting answer for years, which I can understand since there are so many possibilities. I'm also getting especially fed up with doctors not listening and telling me to my face that they don't believe me about things or that they don't want to hear about my symptoms. Obviously those doctors are a waste of my time and energy, but I haven't got much to waste in the first place, so it's very discouraging.

Sorry to hear your story, too. I'm not sure anyone can understand if they haven't experienced it, but it's nice when people try. It's understandable not to be happy about illness, I don't think I ever will be either, but it takes strength to come to terms with it, so it's good that you could do that.
Posted 12/9/2012 1:39 PM (GMT -7)
Hello! I've had CFS for almost four years, and the best advice I've gotten is to accept it. Great advice, very hard to do! However, for me part of that has been telling the people in my life exactly what I am experiencing. I used to avoid this, thinking people would just hear it as complaining, or would dismiss it because, after all, I am still working, still functioning, just at a much lower level. As soon as I decided to STAND UP for myself (that's really how it feels) and tell people what my condition entails, I have felt empowered. I tell people, "If you want to get together, you have to come to me, and we can visit for only an hour."  

I'm pleasantly surprised at the people who have responded positively, and who are supportive. BUT I have missed out, and continue to miss out, on so much. Another great piece of advice I got: you have to "grieve" your past life, that you've lost, so you can accept your new life/condition. I put this advice second, because I think it strikes some people as strange. However, we really have suffered a loss, and I think that coming to terms with that can help us cope. I still haven't come to terms with it, but I have realized that I have many of the same skills and opportunities I always had. I just have to measure out my time, as many have said here, and just rest if I can, when I can. 

Posted 12/9/2012 2:09 PM (GMT -7)
Dear Flipped, Jeez, I just realized my last post sounds so confident and optimistic!! Maybe that's a good thing, but really, this disease is terrible. I have lost friends; I have lost money; I feel like I'm climbing uphill to get thru a day. I am lucky to work just half-time, but even so, I have to call in sick at least twice a month.

I have never found a doctor who understands CFS. With all due respect to medical professionals, we have to educate them.  I, also, had to stay away from doctors and blood tests and all that for months. It exhausts me and gets me nowhere. However, the last time I saw my doctor I told her exactly what my condition and symptoms were. I needed to do this just as I had finally done with 2 or 3 friends and relatives. I described my condition to my doctor and asked her to DOCUMENT everything I said.

Not sure how much good it did except that I felt assertive, and I want her help in fighting for referrals to specialists - these referrals have always been denied. I have blue cross HMO; I send in grievances when my requests are denied, and then I GET A SECOND DENIAL. Maybe I'll cut them up and make a pretty little collage...if I have the energy confused !

Posted 12/9/2012 8:29 PM (GMT -7)
Flipped, yes a lot of people take years to get a diagnosis. I have to say that when I first got my dx I was angry. Great! Another illness that doctors don't think is real. My first dx was Fibro. I did not believe my Rheumy & so I would not pace myself & pushed until I made myself really sick. Only then did I believe the dx. LOL!! So please, you got some really good advice from Carrie, accept it. Also, the grieving process will take time, so go with it, if you fight it then it will take a lot longer. We have to live in reality, no amount of denial will give us back our lives as we knew them nor will we be able to have any more energy then we have. Finding a doctor who knows about CFS is hard but it sounds like you may have found one. You need to get a diagnosis for yourself so you know what you are dealing with, then go from there. I hope you get it soon. Soft hugs, Denise
Posted 12/9/2012 9:54 PM (GMT -7)
Carrie, you are so right & that is very good advice: to accept it & go from there. But we do have a tendency to fight it, don't we. I have accepted it but still find myself overdoing, I guess it depends on if I find it worth it or not. It is a trade off sometimes. I, also, agree with you about the grieving process. That is another obstacle we have to overcome. It is hard enough to have an illness to deal with but to add all of this on top of it is just too much sometimes.

Welcome to the forum. it is nice to meet you. Hugs, Denise
Posted 12/9/2012 11:48 PM (GMT -7)
Thank you Denise!

We are all here to keep each other positive. I am glad to have joined. I know that stress plays a huge factor in CFS, and I'm like you, trying to simplify my life and streamline as much as possible. I order groceries online! I figure since I spend less than I ever had in going out, I can apply that savings to what ever makes my life easier (as long as I can afford it; wouldn't we all love a personal assistant??!)

  

Posted 12/10/2012 4:19 PM (GMT -7)
Carrie- I have learned that I have to be very assertive with doctors. I have gone into offices with paper printed out that list all my symptoms, the degree to which I have them, all the tests I've had, all the doctors I've already seen, etc. As for explaining to people, they still do not understand or seem to care. I explained everything about how I was feeling to parents for a year while they just said things like, "If you just go out and do things, you'll feel better," which you know is not the case. Now they believe something is wrong, but they still are not understanding about it. That's a different story though. That sounds very frustrating about your insurance though. I'm sorry to hear that and also sorry to hear about your condition. I'm glad some people have at least responded positively.

It is good advice to accept it and grieve. It's just hard when it's not something you want to accept.

Denise, yes a diagnosis sounds nice, but I feel like nothing is still ever a definite. Plus, the one doctor who thought it might be CFS has left and may not return to practice. When I get some strength back, I am going to go to a doctor who does both Western and alternative medicine. I'm just dreading going back to doctors and tests, especially now that I feel more alone than ever with no one really there to comfort me or understand. You guys are so positive, and here I am being all negative :-/ I just need to get it all out in this thread so I can then be more positive.
Posted 12/13/2012 9:03 PM (GMT -7)
Flipped, it is not easy with this illness to be positive. I have my times of being negative & being upset. I hate this illness & all it has taken from me. I have had to live one day at a time because I don't know what each day will bring & that has helped me quite a bit. It is just a matter of realizing my limitations & living within that boundary.

I am glad you are going to try a new doctor, who knows this may be the one that finally will find out what is going on with you. Wouldn't that be nice!! I hope all is going well with you, many hugs, Denise
Posted 12/13/2012 9:51 PM (GMT -7)
Carrie, I would love a personal assistant, the closest I can come is the app on my phone, otherwise I have to do for myself. I live with my daughter, Misty (she is disabled w/Lupus, schleraderma, dermatomyocytus, RA & Fibro) & my 2 grandchildren, so I do keep busy some, with the house & I make dinner a couple times a week. Otherwise I lead a very sedentary life. I live in a small town so ordering groceries online is not something I can do but I am so happy you can do this & I wish I could. I agree, with finding ways to do everything as simply as possible. I love my crock pot, we can put something in it in the morning & have dinner at night. We make big pots of soup & stews. I bought a Roomba vacuum cleaner to clean my floors & it works great but now with the kids & their stuff on the floor I haven't been able to just start it & off it goes, have to have them pick everything up first. Sometimes that is just too much for me so I will let it go.

This is a place that we can be ourselves & support each other. no one really can understand our illness except those who also have it. Take care, hugs, Denise
Posted 12/14/2012 1:37 PM (GMT -7)
Denise, I am so sorry that your daughter is also chronically ill. However, I am glad you can let some things go, as you say. I do have trouble letting go; I look around at all that needs to be done and feel frustrated. Yet, I am improving in that regard. I don't feel guilty, and the frustration has declined. I look back at two years ago, when I was EMBARRASSED of my CFS and my limitations. Then, I had already suffered with CFS for almost two years. It took me that long to begin to understand I don't have to be embarrassed and I don't have to do everything. My health comes first. For us, that means rest as much as possible.

I do like the Roomba! I got a light weight dust-buster (ordered online, of course) when I realized my regular vacuum cleaner was sitting untouched....it seemed too heavy even to use for a few minutes. I also have developed a "uniform" as far as my wardrobe. I suspect a lot of us have done this. I have long sleeve striped tees and slim cut jeans, all in different colors, so I can grab something to wear and it will work, and, I hope, look stylish too.  turn   

Think good thoughts! Take care!

Carrie

Posted 12/16/2012 8:58 PM (GMT -7)
Carrie, Absolutely, you do not have to be embarrassed about your home or your illness. It did take me about the same length of time to get to a point of acceptance. I have always thought I was just slow on the uptake & slow to learn. lol! But maybe that is just the natural progression of the mourning & acceptance. We can't help having this illness nor did we ask for it. I used to be so frustrated at what needed to be done & what I couldn't do but now am much more calm about it all.

Another thing I bought myself is a steam cleaner for my kitchen & bathroom floors. It is so light & easy to use. It takes very little energy to use because it is not heavy. I use it quickly on my floors & know they are clean because the steam kills bacteria & germs. Makes me know I am living in a clean house. My daughter bought a hand steamer & we use that to clean the bathroom & shower. You can steam door knobs & counters too. Easy & quick. You can steam clothes with it too, it takes me too much energy to iron.

I hope you are feeling well. Many hugs, Denise
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