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Chronic Fatigue Syndrome
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Posted 1/27/2005 5:43 PM (GMT 0)
Hello everyone. I was just Dx'ed with CFS a few weeks ago. I have had Fibromyalgia since 1989 anyway that is what I was Dx'ed with. The fatigue has gotten so bad in the last several months that it is hard to do my house work etc. even a shower is a chore. I am also having a lot of muscle jerks and twitches. Is that a part of CFS? To be truthful I hate having another dx of an illness that so many do not believe in. I have spent years being told that "oh fibromyalgia don't exsist". What is it going to like now with another illness that can't be proved through blood tests. How do you all deal with the medical profession, family, friends etc? How have you all made your fatigue better?

I go in for a sleep test next month. And I do take an antidpressant to help me sleep. Is there any meds for CFS?I also have diabetes,and a leaky mitro valve.  I am so glad that I ran across this site. I have learnt from it already and plan on reading all the posts. TattingJeanie
Posted 1/30/2005 5:26 AM (GMT 0)
Hi TJ ! (Sorry, my fingers are getting tired tongue )

In the UK at least, CFS - or as it is often known, M.E. - is usually treated with antidepressants, dietary exclusion, and a progressive exercise regime. (Basically like muscle-building - you have to build up gradually, or go back to square one, but you also have to stretch yourself.) I beleive some anti-anxiety drugs are sometimes used, but I'm not sure what kind of success is achieved. As usual with these types of diseases, it's hard to get good statistics.

As far as other people's reactions are concerned, it is always worth remembering that you are further up the learning curve than they are. In this sort of situation, the doctors tend to learn from the patients, rather than the other way around. (Or not, as the case may be.  eyes ) If you do come up against a doctor who does not believe in lupus, fibro, CFS or any other such illness, it's worth asking two questions: why don't you think there is such a disorder - what else do you think it would be ? And: what would it take for you to believe that such a disorder exists ?

And if you can say it without gritted teeth, "you're a better man than I Gunga Din"... 

The thing that has made the most difference to my fatigue has undoubtedly been eating the right food. (That's chronic fatigue. My fatigue tends to come in 3 different flavours, all overlapping in the spectrum of acute through to chronic.) That may be because my fatigue is caused largely or primarily by Crohn's Disease, which affects the gut very badly.

Posted 1/31/2005 2:30 PM (GMT 0)
Hi TattingJeanie,
Welcome to HealingWell and the CFS message board!
Hey, is tatting some kind of needlework? I've done all kinds of needlework, but never knew what tatting is. OOOOOHHHH--or you get lots of tattoos?

Unfortunately I have to get ready for a Drs appointment right now, but just wanted to welcome you. And I'll be back, hopefully later today or tonight, to answer your questions. Sorry about this, but can't change time!

Be back soon.
Posted 2/1/2005 9:29 PM (GMT 0)
TattingJeanie,
Another Jeannie here... I was lurking here and saw your post. I have fibro and diabetes as well. Did the fatigue thing and just dragged myself through it for about four years. Pretty much through that and doing fibro now. Pop over to the fibro forum if you like and you'll get lots of fibro advice. They're pretty active. Brynn here really knows her stuff so you'll learn from her as well. Wish I knew how to tat... my grandma did it.. Gotta run for now but I'll see you around the forum.
Posted 2/4/2005 7:37 AM (GMT 0)
HI again TattingJeanie,
So sorry I couldn't reply the other day.
There aren't very many effective treatments for CFS...or I should say fatigue. As far as all the other symptoms that go along with CFS, yes there are quite a few things that are effective. The problem is, what's effective for one person isn't effective for everyone. So there's a REALLY lot of trial and error involved in finding what works for you individually. But fatigue as a symptom of CFS, well as a symptom of anything, is about the most difficult symptom to treat, that I've know of.

A lot of people do find diet to be an important part of their overall treatment, fatigue included. But again, the diet which works for one, doesn't work for everyone, so you have to do a good bit of research, plus recognizing your own particular tendencies as far as foods that cause trouble and ones that don't. There may be an antidepressant which will still help you sleep, yet not contribute to fatigue during the day. You could mention it to your Dr, and ask if there is a different one you might try.

The only other thing, as far as medication, that I've heard about...and I haven't heard this done very much. But some people have found they can successfully take a low dose of Ritalin, which is a stimulant, during the day, to reduce fatigue. This medication MUST be handled very carefully, as it IS addictive, but I have seen it work very well, if infrequently attempted. There are some alternatives, certain diet supplements which also might help. I couldn't list them all, but I've personally tried a supplement called CoQ-10. I can't remember what the whole word for it is. The "Co" is for Coenzyme, but I forget what the Q is for, or the 10. Anyway, it's some naturally occuring substance that all cells use to make energy. It definitely worked for me, on the fatigue--I functioned for 3 to 5 hours at my normal, healthy activity level. Unfortunately, that much activity triggered a bad flare of my FMS pain, so I wasn't able to continue using it.

Guess that's about all I have, as far as info on fatigue. Hopefully something will be uncovered in the sleep study, which corrected, will give you some significant relief. Keep us posted, if you like! And hopefully others will reply here with some other ideas. Meanwhile, hang in there!

All best.
Posted 2/17/2005 8:29 PM (GMT 0)
Hey Jeanie,

I'm also brand-new to this site. I was recently diagnosed with Chronic Lyme Disease which is causing chronic fatigue for me. I'm pretty new to this all, but I know what you're going through. My relationships, work and pretty much everything else are suffering because I am just so tired I feel like I need to sleep ALL day. I sadly don't have a whole lot of ideas at the moment for you but would love to chat with someone who knows what I'm going through. It's nice to finally not be alone. :) Talk to you soon, LG
Posted 2/17/2005 8:50 PM (GMT 0)
T Jeanie-

I just though of something that might be worth a try with you. I see that Brynn has commented on this but I will add. My doctor has put me on Ritalin (methylphenidate) and I have been successfully taking it for several months. I find it takes the edge off my fatigue and also helps me with some of the depression and irritability that comes along with my disease. I take a very low dose at breakfast and lunch and really enjoy the results. I do still experience chronic fatigue but I believe the Ritalin helps quite significantly. I'm also a user of an antidepressent (amitriptyline) which helps me with my restless sleep. Both medecines have helped me, and I definately think they're worth asking your doctor about. Good luck! Love, LG
Posted 2/20/2005 6:00 AM (GMT 0)
Thanks for your info, lymegirl. And welcome to HealingWell and the CFS message board! I'm not sure if tattingjeanie has ever seen our replies. But many others like yourself will come along and read the replies, and be helped by them. Again, thanks and welcome!
Posted 3/24/2005 6:53 AM (GMT 0)
Hi, I am a new at this Chat Room...and i feel is guess "good" that i am not the only person feeling like this.. I am pist..Because now my body is taking another form,something that i am new. Feeling tired all the time, doctors testing me for this,testing for that, taking blood here and there. I was also, told the i am extremely anemic..and depends on my lastest results for the cbc blood cells, i may need to have a either more testing of course,blood transfusion..and so on...My husband can sort of understand, but no one else does. I had seen so many many doctors,,until just tonight, he point blank said, :you have CFS...but i am doing other test for my red blood count,because they are dropping...I know, there is someone outthere that can understand my frustation, and i Thank You for letting me part of this ...I am very positive...! i don't let this things let me down..however, tonight , i feel like i am on a hole.. I am walking a the 3-Day breast Cancer Walk in Ca in Oct/05, i started training...but i can only walk 30 mins so far, because my legs, well they just don't want to do their job..I don't care, i am doing my walk no matter walk... Just even to shower gets me so fatigue...i am getting me a haircut to stop this... mad
Posted 3/24/2005 9:07 AM (GMT 0)
Welcome p4c!
Yes, please feel free to read all the messages, and even post some of your own, if you have quesitons. We'll be glad to try to answer, and to offer support, comfort and encouragement, if necessary. I'm not quite sure what you mean about a haircut, but let us know if we can help. Take care.
Posted 3/24/2005 3:57 PM (GMT 0)
confused
I guess i meant for hair cut...it that my hair is long...and just to take a shower i get so tired ,by the time i am done and brusing my hair, and already out of breath or something i am shaking.....i think short hair will mk some easier for me...
Thanks for your support...i out for my 30 mins walk...and some errands...talk toyou soon...
And if anyone else, would like to comment or help me or i may need of any assistance Hey i am right here...
Posted 3/26/2005 9:10 AM (GMT 0)
Hi p4c,
Ooohh! I understand now! Sometimes when I get tired (and sometimes when I'm not even tired!) I don't think very clearly. And I was thinking...anemia, low rbc, haircut...hhhmm...! LOL! So sorry about that.
Yes, I do know what you mean about long hair and showering, and that's not to mention doing something with it after shower (drying, braids, bun, ponies, clips, barettes, etc.). I prefer to wear my hair long, really long (waist+), but I do have to keep it at a manageable length -- a little past shoulder -- because of my pain and fatigue. When I first got really, really sick, I had waist-long hair, but had to cut for first time in 7 years. Cut up to shoulder, but a few months later, cut to one inch all around. Even then, taking a shower was all I could do in a day. After shower, I didn't have enough energy to do anything else, and I would have to rest up the day after I took a shower. I'm a little better now, though, hair long once again, but still not waist long.

I've never heard of anemia or low rbc mentioned as a symptom of CFS. But I do hope you can get that figured out and treated properly. It WILL improve SOME of the fatigue, once it's treated successfully, but probably not all of it, if you DO have CFS. Could it be that you don't have CFS, I mean, do you trust your Dr's assessment on that? I only ask because you didnt' mention any other symptoms, or how long you've had the fatigue. And I don't mean to pry, just want to make sure you're getting a fair shake from your Dr :-)

Great to hear such a positive attitude, and conviction to have a LIFE, despite problems. But wow, that 3 day walk is an impressive goal. I never thought about it before, but even though it's raising $$ for cancer, it can benefit people with many other illnesses. Well not financially, I just meant like you, where you're using it as part of your health/exercise program. A 3 day walk would be way beyond my abilities, so take a mile or so for all of us who can't? And keep us posted on your training!

Well, good to meet you, and sorry for the confusion before.
Take good care.
Posted 3/27/2005 4:59 AM (GMT 0)
redface
I has been a long day today and tomorrow..as well..will be...I am dealing with CFS as nothing else...i try to focus on things that need to be done..I have a supportive husband..and he actually sends me to bed, when he see me,that i am not myself...like today, at church/service, i step out of service, because i felt like the room was spinning and had short of breath...he works on ministry of the church,,he left and brought me to a couch that we have in our church to rest...I feel very very bless that he takes care of me..and even my boys...i have 5 and 12, they already know,when mommy needs to rest..and sometimes i just get from work, spend like 1/2 hr with them..and they send me to my bed..what i do sometimes..is that i asked them to be in bed withme and tellme about their day...and they watched cartoon..until i fall sleep...I had set up a goal to Walk the 3-Day walk b4 i was diagnosed with cfs and Fibromyalgia.,b4 i signed up. I knew was very tired and fatigue all the time..but i never expect this ...Also, my iron leven drop to 22..which i think normal is between 60-70..doctors cannot find where i am bledding,since i have a partial hysterectomy//in 03...They want to test for colon..You know . what i told them.."Listen ,do what needs to be done ok? mad and don't waste my time...if they don't know..they find someone that does..Unfourtanely, i have 2 cousins from my daddy's side that had blood cancer, one survive,other did not..ANd let me tell,it does not bother me at all..If the "C" word, let it me, I see my self in the ring fighting with my best gloves and wining..I have 2 children i am going to see them grow up..The Lord has plans for me..it may not be the ones i want, but my faith is as stronger as ever...I don't ask Why me>..i ask Lets get fixed, lets get an answer..so I will doing research ,by books.library,hospital, anything,anyone that has been touched by this...
Pray4cure...
Posted 3/29/2005 5:49 AM (GMT 0)
We'll have a good thought for it not to be the c word. But let us know either way, whenever the tests are done. Meanwhile, I hope the training for the walk goes well. All best.
Posted 3/29/2005 10:00 PM (GMT 0)
:-)  wELL, REsults not good i am having blood transfusion tomorrow afternoon...and they are testing inside for any bleeding...hey i am still training for my walk... tongue
Posted 3/30/2005 7:47 AM (GMT 0)
That thumb's up is for the training!

But, at least you'll feel a little better after the transfusion.  Keep us posted  :-)

Posted 4/21/2005 6:09 PM (GMT 0)
I have't been diagnosed with CFS but I am desperate to find out what is wrong with me.  I have been in remission from Hepatitis C for about a year.  I was on interferon for a year and was practically comatose during that time.  I have been off the medication for over a year but I am exhausted all the time.  I have chronic pain mostly in the upper part of my body but the joints in my knees and ankles do hurt sometimes.  I cannot focus and complete a simple task.  Even while writing this I am drifting off, spacing out.  Can anyone give me a direction in which to go from here?

Posted 4/21/2005 6:12 PM (GMT 0)
I'm logging off for now. I won't be back until next week.
Posted 4/22/2005 9:43 PM (GMT 0)
Hi Grace,
Welcome to HealingWell and the CFS forum!

Well I have heard that the interferon can cause symptoms, even long after remission is declared. There may be some info about that in another thread in this forum, but I'm not sure which. Also, there is a Hepatitis Forum here at HW, and you could ask there as well :-)

Take care.
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