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Chronic Fatigue Syndrome
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Posted 6/30/2013 6:41 PM (GMT 0)
Hi, I am new on this forum, was sent here by Karen who is a moderator on the depression forum. After reading the post on this forum I am beginning to wonder if I might have CFS. I have been to so many doctors and have had so many different test but they have all come back normal and the doctors all tell me I have depression but I am starting to wonder. My problems started after having a bad case of the flu. I thought it was my blood pressure medicine and I kept getting it changed but the tiredness just wouldn't let up. I retired back in 2010 and I just went down hill from there.

I am so exhausted that it is hard for me to do anything, I live on frozen dinners, Ensure, cereal, anything that does not take alot of effort to make. It is even an effort to take a shower because I am so exhausted. I also have nasuea (spelled wrong) burning in my feet and hands and arms, headaches off and on, and just a feeling of being sick. The other day I went out because I had 2 doctors appointments, while I was out I felt not to bad, I even went to Walmarts, didn't stay long because I started feeling tired. The next day I slept off and on all day and also slept at night after sleeping all day. I have had depression before and have never felt like this. Does this sound like it could be CFS? If only I could get some energy I could put up with the rest of this.
Please get back to me and let me know what your views are.....really would appreciate it. I have really become disgusted with Doctors, they just don't seem to want to spend much time on someone who is on Medicare.
Jazzy
Posted 7/1/2013 12:11 PM (GMT 0)
Hi Jazzy, it sounds to me like you may have CFS.

I have a few questions for you:
- do you always seem to catch every bug/virus that comes around?
- when you do get sick, does it seem to take forever for you to recover from it? E.g. does the flu put you out of action for 2 months instead of 1 week?
- do you often have a sore throat, even in the absence of a virus?
- do you get brain fog? (i.e. Do you find it harder to concentrate? Do you have a poor short-term memory? Is it harder for you to understand new ideas than it used to be? Can you forget what you're saying mid-sentence?)
- do you find it hard to cope if it's really cold?
- do you feel like you need to pee more often - but when you try to go, not much comes out?
- has your appetite changed (increased or decreased) in the last couple years?
- do you ever feel dizzy, weak and faint, even if you've had enough to eat?
- when you sleep, do you feel like it is only a light slumber rather than a refreshing, deep sleep?
- do you get aches and pains in your muscles or joints or both?

If you don't answer "yes" to each question, that doesn't rule out CFS as a possibility (i.e. you may still have it).

Many other health conditions can cause these symptoms. But if the doctors have searched and not found any obvious causes for these symptoms you have (fatigue, post-exertional malaise, nausea, headaches, neurological burning sensations, flu-like feelings) then it may be CFS, otherwise known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephalomyelitis (M.E.). By the way, blood pressure problems can also be a part of M.E.

When I first became sick, it felt like I had the flu - and it just never went away.

Hoping you get diagnosed properly as soon as possible.

Jasmine
Posted 7/1/2013 5:53 PM (GMT 0)
Hi Jasmine Grace,
What a pretty name......I feel so bad for you having all these problems at the tender age of 18, it makes me ashamed to even be complaining about my aches and pains, etc. I am a Senior, and have been blessed with pretty good health all my life.

I do have some of the symptoms that you listed, sore throat off and on, pee more often and not much comes out, went to a urologist and everything was fine. he said he though it was caused by my nerves. Have problems with loss of appetite, feel dizzy and weak even through I have had something to eat, perhaps I am not eating enough on this one, When I sleep I wake up startled with my heart racing, takes me a couple of minutes to calm down the rapid heart beat and I do have aches and pains in my muscles and joints.

Thank You for your information, I will be talking to my Doctor in the very near future concerning this condition.

I wish you tons of healing, your to young to be going through this.
Nancy
Posted 7/2/2013 5:07 AM (GMT 0)
Hi Jazzy,

Thanks, it's the name I wish I had. If I wasn't afraid of offending my parents, I would actually get my name changed to that.

Don't feel bad for complaining, this condition is miserable at any age!

It sounds to me like you probably do have CFS, especially considering those additional unexplained symptoms. Remember to mention every little symptom to the doctor, it will aid tremendously in getting an accurate diagnosis. Do you know how I got my diagnosis? I went through all the possible symptoms of CFS that I could find in my research, and listed each one that I had. I showed the list to the doctor, without saying anything about what I thought I had, and she said, "I think you may have fibromyalgia and chronic fatigue syndrome." Aha - it worked! Of course, she then had to proceed to test me for about a million other conditions that could possibly cause those symptoms before giving a diagnosis; I wouldn't want it any other way.

Thanks. I hope your doctor is helpful.

Hugs, Jasmine
Posted 7/3/2013 12:43 PM (GMT 0)
Good Morning Jasmine,
I wanted to ask you if you are tired all the time? I just feel like I can't get enough sleep. Even through I get a full nights sleep I still feel tired in the morning and I have no energy. I will sit in my recliner to watch TV and I nod off all the time. My eyelids just feel so heavy that I can't keep my eyes open. I don't nap long maybe 45 minutes than its like I am startled awake.......terrible feeling. Also I have a burning sensation in my forearms, hands, and the top of my feet, weird, that comes and goes.

If I do have CFS is there anything they can give you to relieve these symptoms, I feel like my life has stopped because I always feel so tired and lack energy to do anything.

I hope my post finds you feeling as good as possible. Do you work or go to school?

Lots of Hugs, Nancy
Posted 7/3/2013 12:44 PM (GMT 0)
Good Morning Jasmine,
I wanted to ask you if you are tired all the time? I just feel like I can't get enough sleep. Even through I get a full nights sleep I still feel tired in the morning and I have no energy. I will sit in my recliner to watch TV and I nod off all the time. My eyelids just feel so heavy that I can't keep my eyes open. I don't nap long maybe 45 minutes than its like I am startled awake.......terrible feeling. Also I have a burning sensation in my forearms, hands, and the top of my feet, weird, that comes and goes.

If I do have CFS is there anything they can give you to relieve these symptoms, I feel like my life has stopped because I always feel so tired and lack energy to do anything.

I hope my post finds you feeling as good as possible. Do you work or go to school?

Lots of Hugs, Nancy
Posted 7/3/2013 1:54 PM (GMT 0)
Hi Nancy,

Yes, I'm very tired, all the time, for the last few years. I'm constantly drifting in and out of sleep, and I can never get into the deeper stages of sleep. The sleep is non-restorative; I'll wake up feeling like I hardly slept. I do university part-time - sometimes I will be studying and I will doze off with my head on my desk, sometimes too tired to even get into bed before I fall into a light slumber.

If you do have CFS, then you can gradually reduce, but not eliminate, the symptoms with time. There isn't a cure... It's learning to manage the condition that is the key. You need to break up little bits of activity with larger chunks of rest (I rest more than I do things). Even on the days when you feel better, you have to be careful to not exert too much energy, because all that will do is land you back in bed for the next few days. Lifestyle balance is so important. Do one thing, take a break. Do the next thing, take a break. I find if I try to do a lot at once - like multitasking or doing one thing after another without stopping - then I crash in a heap.

This burning sensation - is it painful? It's possible that you may have fibromyalgia. I suggest you pop over to the fibromyalgia forum and check out the thread called "Fibro 101" to see if you think you may have fibromyalgia. Fibromyalgia involves all of the symptoms you mentioned, plus more. In fact, since you don't really seem to catch every single bug/virus and you aren't particularly intolerant to the cold... I would hazard a guess and say that maybe you have fibromyalgia and not CFS. Anyway, definitely check out the fibro forum. You can find tips for relieving fibromyalgia symptoms (including fatigue) there:

https://www.healingwell.com/community/default.aspx?f=24

I've been pretty sick lately... but emotionally I'm doing better in the last few days :)

Hope this helps.

Hugs, Jasmine

Post Edited (Jasmine Grace) : 7/3/2013 8:04:16 AM (GMT-6)

Posted 7/4/2013 9:56 AM (GMT 0)
Hi Nancy, Welcome to the forum, I wish it was under better circumstances that we get to meet you. I have had CFS & Fibro for about 9 years but CFS is my primary illness. As you said, if I could get rid of the fatigue I could deal with everything else. My life is spent on a day to day basis because I don't know how I am going to feel on any given day. I make very few plans anymore. I was working when I first got sick but was unable to continue working so I had to quit my job. That was really a hard thing to do but I am now on Social Security Disability & have gotten used to being at home. I have more time with two of my grandchildren so that is nice. Like you, I deal with depression and it can cause me lots of fatigue some days.

I have good days too but good days are not like most people would consider good. I can go shopping for a couple of hours or clean house or work in the garden but not all on the same day, lol! And not without breaks. My good days would make healthy people feel like they were sick but we get used to a certain level of tiredness, at least I have. To answer your question, I am tired all of the time. One thing that my Dr did was get my sleeping under some kind of control. I take Tizanidine (a muscle relaxer) & Trazadone each night so I can get to sleep & stay asleep. I sleep long nights but the trade off is more quality to my day. I so wish I could feel better & have my old life back but it is what it is.

I get some burning in my feet sometimes but I don't know what causes it, I think it is from my Fibro but don't know for sure. Hope you get that figured out. I used to go from Dr to Dr with a long list of symptoms until I actually got dx'd. Now i only see my Dr every six months or so. I use meds, suppliments & healthy eating to stay as healthy as I can. Let us know how you are doing. Many soft hugs, Denise
Posted 7/8/2013 10:24 PM (GMT 0)
Hi Denise,
Thank You for answering my post. It's always nice to hear from other people who are not feeling well. I really don't know what is wrong with me. I don't think I have CF or Fib. I think my problems might be related to depression and the medicines I am taking to treat it. I just don't know.....

I am so sorry to see that you have so many medical problems, I see that you have 4 children....do they help you out at all? I have 2 sons, one lives in SC so I don't get to see him much, so he is not around to help me out at all. I live in NH. My other son lives up the street but I don't get along with his wife so I don't see him very often either, since I live alone I have to hire people to do some of the things that I would normally do until I start feeling better. I have been feeling badly since Nov. 2010 and have been to all kinds of Doctors, been to the ER a couple of times only to be told that all my test come back normal. The only thing that was found was that I have infected tonsils and a cyst on the back of my tongue that I will be having removed in the near future, I guess I'm a little scared that I might have throat cancer.....but since my ENT doesn't seem to be to worried about it, I should stay off of web MD and stop trying to analyze myself. LOL I think we all have a habit of doing that. This all started with me about a year after I retired, it came on gradually with the different symptoms and just got progressively worse. I think I have to much time to think about every bad thing that happened in my life. I try not to think about those things they just come into my mind out of no where. Yes, I am going for counsling, I have a real nice counslor who I can talk to and he seems to understand. Well, I guess I have gone on and on enough, my pity party more or less....I just know that I will beat what ever is wrong with me eventually or find out if there is something wrong with me. Thank You Again for answering my post and I hope I didn't chase you away. Hope you are feeling good today and days to come.

Hugs,
Nancy
Posted 7/9/2013 5:52 AM (GMT 0)
Nancy, I have been feeling pretty sick for the last few days & today I really felt down & then there was a thunder storm & after it was over I started to feel better. The barametric pressure can really do me in, I am hoping to be able to get out tomorrow & do some shopping.

I agree with you that you need to get your meds & depression under control, then you can see if you still have symptoms that could be CFS. I have dealt with depression for my whole life & can remember times it put me into bed for months at a time. What does your doctor have you on for the depression? I am on Citalopram 40mg & it has helped me immensely. I had been on 20mg up until 3 years ago, after my husband died it was upped & I realized that should have been done long before. I am very happy you are seeing a counselor & have found one you like, that is a huge step in the right direction. Good for you!!!

3 of my children live far away from me so I only see them once a year or so, miss them. My daughter, Misty, moved in with me after my husband died to help me so I could keep the house & not have to live alone. She is very ill with 4 autoimmune illnesses & Fibro. Now we help each other. She helps me with the bills & I get to help raise 2 of my grandchildren. We all do very well together & are happy with where we are at. This year we put in a very small garden, I mean really, really small but are loving watching the things we have planted grow. I used to have huge flower gardens & my husband had the veggie garden but I had to give all that up so having this garden gives me real satisfaction.

Soft hugs, Denise

Never worry about rambling, as you can see I do too. lol!
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