Undiagnosed but wondering if it's CFS

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New Member

Date Joined Jun 2012
Total Posts : 3
   Posted 6/10/2012 3:18 PM (GMT -6)   
Hello everyone. I'm new here. I've been having fevers up to 100.9 and usually around 99.5-100.5 daily for a few months now. I have been very tired and yesterday was a typical day for me, I took 3 long naps. I'm just so tired all the time. It seems that napping doesn't help. Usually my tiredness hits me all of a sudden a few times a day and it's so strong that I end up having to go take a nap in order to be able to function later. I have muscle pain in my thighs and knees (tendon pain?) it's a burning feeling. Moderate pain.

The test results that have been abnormal are the following:
Results 4/16/12:
BUN/CREAT RATIO 25   H (high)
CARBON DIOXIDE 19 mmol/L L (low)
ESR (SED RATE) 35 mm/hr H
MCH 26.5 pg L
RBC 5.14 x10E6/uL H
RDW 15.5 % H
RHEUMATOID FACTOR 10 IU/mL (i think that's a normal number though)
WBC 12.1 x10E3/uL H

Results 6/6/12:
WBC normal (6/6/12)

Those are all the bloodwork that were abnormal except for my cholesterol panel (high).

I'm trying to figure out what I have, is it CFS? OH my EBV was positive. My doctor said that it shouldn't be positive anymore.

Doc put me on doxycycline antibiotic to see if it makes the fever disappear. Today is day 3 on it. Duration will be for 14 days total.

I was diagnosed as a little kid with fibromyalgia but my gp doesn't believe me it seems since I was so young. I do have very sensitive skin. If you poke me it really hurts! I've never had my pressure points tested though. But even bumping into a wall kills me. I've read that fibromyalgia doesn't cause fever. So I'm now looking at CFS as being a possible answer. I was tested for the ANA for lupus and it was negative.

New Member

Date Joined Jun 2012
Total Posts : 3
   Posted 6/10/2012 4:45 PM (GMT -6)   
Thank you, Kate. I'm waiting on a call from my doctors office to tell me something - anything. I'll probably hear back on Monday or Tuesday. If not, when I see my doc next I'll request a referral to a rheumy. I'll probably ask to go to my moms rheumy.

New Member

Date Joined Jun 2012
Total Posts : 2
   Posted 6/10/2012 11:27 PM (GMT -6)   
Hello. I am also new here...I found you through "BYDLS" facebook page. Love the list of symptoms, I am going to have my husband read them. He thinks most of my trouble is all in my head. I have:
and vision loss due to the meds. It makes me wonder if the 30% pain relief is worth not being able to see very well. I hurt all over every day, and it all started about 8 years ago. Was finally diagnosed 3 years ago. They have tried me on all of the "approved" meds for fibro, but they all had severe side effects for me. Now I am having trouble with my eyes because of the meds she is using to get me at least a little relief. When I went to the eye Dr. He gave me glasses. Two months later I went back because my vision was blurry. He said my RX had changed. Got new lenses for my glasses.. Three months later my eyes changed again. And last week, there was a different RX. My Dr, knows that it is causing blurred vision, but she wants to hold off on switching any of my meds.
Now I am also getting knots on the bottom of my feet. Feels like I am stepping on marbles when I walk.
Thanks for letting me join you here!

New Member

Date Joined Jun 2012
Total Posts : 11
   Posted 6/12/2012 7:45 PM (GMT -6)   
I'm also new to this site. Have posted on another page and don't really understand some things about the site, but I'll learn. However, I've had FM, CFS, Chronic pain and a gazillion other symptoms for years. I self-diagnosed years before any of the doctors I saw could tell me. I agree that a Rheumatologist is a very good idea. The Dr. who diagnosed me when I was in my 40s (I'm 70) was a Rheumatologist. I refused to believe him at the time. FM had just become a diagnosis and most doctors still didn't accept it as a legit illness. Like many illnesses; if you have a dozen doctors and give them the same symptoms they'll all tell you something different, but our symptoms are among the hardest to get a diagnosis and there's still some stigma attached to these diagnosis. When you said you have fever I immediately thought Lupus because that's also a hard one to diagnose and fever is one of the common symptoms. It does sound like you might have FM or CFS, but you could also have some kind of autoimmune diagnosis. My doctors (other than my Rheumatologist) tell me I'm healthy because I don't have heart disease, diabetes, cancer, or any of the other most common diagnosis today. I've had all the blood tests and a lot more tests you didn't list and they were all normal. I certainly don't feel the slightest bit healthy. Some people go to many doctors over a period of years before they're ever diagnosed with FM or CFS. Once you find a Dr. who is knowledgable you'll at least have someone who will work with you to try to figure out what works best for you. Always keep in mind that we have a lot of the same symptoms, but our symtoms are rarely exactly like everyone else. I'm fortunate to have a husband who is willing to read anything I ask him to read. I've been getting newsletters etc. about these diagnosis for years so he's well educated. If he had not read everyting I've read I have no doubt he'd have a hard time understanding and supporting me. No one can understand unless they've also experienced the symptoms, but he really tries. When I was much younger I took antidepressants for 8 years because I was severely depressed. I agree with some posts on this site that the older antidepressants are better. They seem to help more people than the newer ones and don't have as many side effects. Most of us with FM, CFS are sensitive to medications and it's hard to find one that works. I can't take at least 75% of drugs doctors prescribe "normal" people. I have strange reactions and often really bad reactions. Eventually I became sensitive to antidepressants and can no longer take them. I do take a small amount of amitriptiline (sp? brain fog) but it isn't a high enough dose to be therapeutic. It just helps me sleep a little along with sleep medication. The last time I saw my rheumatologist I told her I didn't like taking sleeping pills. She said she'd rather I take sleeping pills than do without sleep, because lack of sleep causes all symptoms to be worse. Some doctors believe FM is a sleep disorder and lack of sleep brings on all the other symptoms. Lack of sleep makes all illnesses worse no matter what it is. So I'll continue taking them and hope some day a better treatment will be found. I've been in a pain clinic for 5 years. That has helped a lot. Only trained pain specialist know how to treat pain properly. I wish I didn't have to take pain meds. but the alternative isn't very attractive. I fought taking meds for a long time and finally decided I'd rather take a few than be miserable all the time. I hope you find someone who can diagnosis and help you. I'm so grateful I finally found this site where there are people who understand how I feel.

New Member

Date Joined Jun 2012
Total Posts : 3
   Posted 6/12/2012 8:15 PM (GMT -6)   
Aww I'm sorry to hear all you are going through and have been through. I thought of Lupus as well but my ANA was negative. So I guess it isn't Lupus. Today my fever is very minimal. Practically my normal. By this time it's usually more prevalent in my system but I checked it just a moment ago and it was 98.8. Woohoo! I think the doxy antibiotic is working! AND that is without any anti-inflammatory medications. I just took a Relafen though because I feel like I have a fever, achy, bone aches, feeling cold and generally unwell. Stomach is a little upset, not bad though. So I hope I can find answers soon. If not, I'll eventually ask my GP for a referral to a rheumatalogist. But I may not do that until after we move to Nevada next year. I'm currently in Ohio.

I'll have to get new doctors then anyway, so why not do it then. lol I hope all is okay with you. HUGS!

Regular Member

Date Joined Mar 2012
Total Posts : 350
   Posted 6/18/2012 2:45 PM (GMT -6)   
Hi neew member, So sorey u have so much pain. I felt the rocccks on soles over 20 year ago. I will bee thinking of j. i see mu neuro. on thur. My ability to type is terribley, ane speakng voice.too. again welcime. Please reade the Sjogrens page. untill later Cathy
I am 61 years young. I have neuropathy in both feet and hands. I have spinal stenosis and arthritis in my back. I am bipolar and with panic attacks. I cannot walk. I choose to stay home all the time. I love living in the country. Its very peaceful.

New Member

Date Joined Jun 2012
Total Posts : 11
   Posted 6/18/2012 4:46 PM (GMT -6)   
MommaQ, I read your post. So sorry you aren't able to walk and can't go out more. A surgeon damaged the nerve in my left arm/hand and paralyzed it. I couldn't feel anything or use it, but had a lot of pain for 18 months. Was given Lyrica because it was actually developed and used for nerve pain/damage. Unfortunately I had a severe reaction to it that was devistating. Too much to describe here. Have never totally recovered.  I went to PT 3X a week for 18 months; in a wheel chair for the first 6 months. Got most of the use of my arm back and some in my hand. Can type better than I can write or do a lot of other things. Still have chronic pain in that arm/hand. I have some health issues that help me relate to you though not exactly the same. My history of multiple traumas is probably why I have FM and CFS. Have a permanent tracheostomy for breathing and can only speak in a whisper. Most people assume I had throat cancer, but I did not. Few people have ever seen a tracheostomy and those they've seen have usually had throat cancer. All my friends  and my husband need hearing aids because we're all in our 70s and older. Makes communication difficult, so I enjoy talking online more than in person. I've always been a people person and miss being as social as I was until 6 years ago.
Seems like not much activity on this thread. Guess I'll have to check out some of the others.

New Member

Date Joined Jun 2012
Total Posts : 1
   Posted 6/23/2012 12:18 AM (GMT -6)   
If you have chronic tiredness, and severe fatigue, and muscle twitches and tremors you should definitely get your amalgam fillings removed the toxic metals including mercury vapour in these fillings could be the source of your illness. And dont believe what the doctors and dentists are saying about there safety science has prooven them to be a severe health risk and the world health organization agrees they are bad news!!!!!
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