Discussion in 'Fibromyalgia Main Forum' started by memaw, May 10, 2003.
I was diagnosed with FMS. I never thought about Chronic Fatigue. What is the difference?
I have both. I know someone who only has FMS and she has pain, IBS, etc. but she is not exhuasted. CFS in my experience is complete and total exhaustion no matter how much I rest, how well I eat, etc.
Good luck to you.
I have always had the fatigue but just thought it was part of FMS. I was never a napper but now I have to sleep 2 to 4 hours every day. I believe this is definitely a progressive disease (notice I didn't say syndrome).
When I worked, I could barely drive home and I slept in the recliner for a couple of hours before I could get up and make dinner.
This DD has made havoc of our quality of life, hasn't it? So much for the golden years.
You can have "chronic fatigue" with FMS. But there is a difference between chronic fatigue and Chronic Fatigue SYNDROME. The current diagnostic criteria for CFS, also known as Chronic Fatigue Immune Deficiency Syndrome (CFIDS) are:
1. Clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social or personal activities; and
2. the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue:
• reported impairment in short term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social or personal activities
• sore throat
• tender cervical or axillary lymph nodes
• muscle pain
• multi-joint pain without joint swelling or redness
• headaches of a new type, pattern or severity
• unrefreshing sleep
• post-exertional malaise lasting more than 24 hours
I have all but the sore throat (which I do have right now because I have a cold & bronchitis). Hmmmmm. How is FMS described verses Chronic Fatigue. What about the Epstein Barr virus? Does it show up in some kind of test?
Yes, exposure to the Epstein-Barr virus will show up on a test. But CFIDS is a diagnosis by exclusion, and a positive EBV alone is not enough for a diagnosis of CFIDS. If this is something you want to pursue, you want an experienced doc who knows what kind of tests to run, and will be able to interpret all of your results to see if there is a pattern that fits a CFIDS profile. Your doc will be looking for evidence of EBV, HHV-6 and other viral or bacterial infections, immune system activation, cortisol levels, hormone levels, IGF-1, etc etc... CFIDS and FMS have a lot of overlapping symptoms, but your symptoms could indicate CFIDS in addition to the FM. The only way to find out is test, test, test.
Kalina and Spacee, thanks so much for your responses. I am thinking of going to Tyler and find a doctor. The problem is that it is 80 miles from here and having a husband with bad cancer makes it doubly hard for me to do that. I never know when I am available to make the trip.
I am concerned that my having been relatively inactive in trying to get help this year will hinder the decision to find me disabled. He has been sick since last April with three different bad problems and all of my time has been taken up trying to take care of him. I just haven't been able to focus on myself.
It seems like the SS folks don't give our pain much thought. Not having experience this type of pain, they just think that even though we hurt, it won't kill us so we can keep on keeping on. That is what got me down so much in the first place, just pushing and pushing myself.
When I go in on Monday for the mental evaluation, if it is one of my more lucid days, I'll kick myself.
Thanks again for your help and support. So glad I found this site
I'm sorry to hear your husband has cancer. You and your husband must have your hands full.
When I saw that you mentioned going to Tyler, I looked at your profile and noticed you were a fellow Texan living near Palastine. Howdy, neighbor! (I live in Dallas.)
I do have several concerns and questions if you are going to try to go to Tyler for diagnosis. Do you have a referral to a doctor there who you know diagnoses and treats CFIDS patients? I hope you do, but if not, you might want to click on the "Doctor Referral" tab above -- there's a very good article there on how to find the right doctor, and a link to the Co-Cure Good Docs web site. It looks like there are some excellent docs on that list, but the closest ones to you -- who are best suited for the initial testing anyway -- seem to be in Houston or Fort Worth.
I understand driving -- even to Tyler-- will be difficult. Do you have a friend or a relative who might be willing to take you?
Good luck on the SSDI, by the way!
Kalina, I'm glad to hear that we are neighbors! In Texas, 120 miles is a fairly close neighbor.
I have a friend in Dallas that I could stay with and we have children living in Houston. Right now, I can't handle trying to go to either Houston or Dallas. One trip would be do-able but I am sure there would be follow-ups. I may make some calls to Tyler and see if I can find someone there. My GYN moved there and could probably advise me.
Also, I have located a support group in Palestine that meets twice a month. The last article I read on them said they had about 40 members. A lot of hurting people for such a small town, isn't it?
I had (have?) more or less given up on any real help. I read about all of the different drugs being taken and it seems that none make any real difference and I wonder about all of the long term effects of those drugs.
With the disability quest, I have worried that because I am not being more medically pro-active that they might penalize me. As I said before, though, I can't see that anyone is having much success with medical treatment.
My email is email@example.com if you would like to email me. I would like to exchange telephone numbers. Thanks
I am glad I started with this board. I feel like I have someone to talk to who won't say "Oh, I'have that, too. It's called old age".
I do want to go to the group and I have it on my calendar for next week (can't depend on my mind, you know).
Isn't that the truth! I have a book with birthdays in it but I forget to look. Also, when I check the calendar to see if it is time to do the flea stuff on the dogs & cats, I think to myself "that doesn't sound right. Seems like I just did it." I don't even trust what I write down.
I have got myself into a mess. We needed to have a garage sale and I committed myself to work with a friend this weekend. I am really not up to this but the ads are out and I have already hauled a load over there. Darn! I know why I've put it off for two years now.
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