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Thank you so much for your response! Unfortunately, neither Tylenol nor ibuprofen bring down the fevers. My GP and the infectious disease specialist said that Tylenol does not bring down the fevers because they are not infection-related. My GP believes I have an auto-immune disease. The infectious disease specialist said it's either an auto-immune disease or cancer, but there's no point in going on a wild goose chase for cancers at this time.
Basically, the fevers have to SPIKE before the doctors are concerned. In my case, the fevers never go over 101 F.
I'm sorry you have lupus. I was tested for lupus a few years ago, but that was ruled out because my ANA was normal.
I'm investigating the possibility of lyme disease also (the people on the lyme disease forum have been very helpful).
Since you're the only one who has posted a reply to this question, I guess not many CFS people have chronic low-grade fevers (?).
Is it widely accepted now that CFS is an auto-immune disease? Do your fevers ever reach over 101 F?
I am brand new to the forum. Carrie..I have almost identical symptoms and run low grade fevers like you do. I am curious...how many other illnesses have you ruled OUT..like MS, Lyme, lupus...
The infectious disease specialist I saw in Oct/06 did blood work (CRP and ESR) that was negative, so apparently that ruled out lupus. However, he still hasn't sent his report to my GP (PCP). My GP recently stated that the auto-immune disease I have could be lupus, so I am going to ask him to test my ANA (was negative in 2001). The neurologist I saw in 2003 regarding my right hand tremor said he didn't think I had MS (my MRI revealed nonspecific high flair areas and four T2 areas - white matter), but I forgot to mention my long-standing bladder dysfunction. The urologist said that they always suspect MS when a person (like me) has bladder spasms.
I'm going to see the lyme disease doctor on Sept 12/07. I saw him last year, and he gave me the dx of "clinical lyme disease" and started me on two abx for three weeks, but on the last appointment he changed his mind and wrote "no indiction of lyme disease"; I believe because I collapsed while walking through his office door. He told me that I should see an GI specialist and an infectious disease specialist. I did see these specialists as per his advice. I am going to advise him of this when I see him again, and I'm going to bring the report from the Emergency Department so he has a clearer picture of what was happening the last time I saw him, and I am going to ask him to send the new blood work to California, which I found out about from the H/W lyme forum.
The infectious disease specialist said that "the fevers are just part of you" and "at this point there's nothing jumping out so there's no point in going on a wild goose chase for cancers." He said that chronic fevers are caused by either infection, an auto-immune disease or cancer. I'm not worried about cancer; however I strongly believe that it is an auto-immune disease, in addition to FMS.
Wow, my story is long and complicated. How are you doing? In addition to CFS, do you also have an auto-immune disease like MS, lupus, or a diagnosis of lyme disease? Some of these conditions can take a number of years to diagnose. Let me know how you're doing when you get a "window of energy" (I know how disabling chronic fatigue can be).
Hey Sally, Sandy, Ruth, Molly & Everyone,
Sally, I'm glad you're taking the bull by the horns and keeping yourself educated. Regarding lyme disease, you should jump over to the lyme disease forum and check out their resources, and post some questions. They are very helpful over there. "Ticker" gave me web sites to read and other resources, and everyone is very knowledgeable on the lyme forum. Ticker may be able to answer your question about cluster areas. I'm seeing the lyme disease doctor on Sept 12/07. I, too, have sacroiliitis, first dx'd after a significant motor vehicle accident. I was also taking the maximum dose of Celebrex, but my doctor took me off Celebrex due to the "black box warning" and the fact that I have IBS and GERD. It sure worked like a charm though, and I miss it. Take good care, and let us know how your specialists appointments turn out. Oh, you asked me about warm water therapy. I don't do well in warm water (even the bath) because I get very weak.
Ruth, I'm sorry to hear that you have the "stupid fever thing" - I too have used that term. Where do you get the tingling? I often wake up with numbness and tons of tingles in both hands. Good luck with your rheumy appt.
Molly, I don't think it's the EBV because I tested negative for EBV in 2006, and back almost 20 years ago, the doctor told me my blood work showed "Epstein Barr or similar" virus. That's a very good suggestion about "stealth" infections and anti-virals.
Everyone, I'm sorry if I forgot to answer any questions -- and ask more -- today. I saw the doctor today because I've had what seems like a bad cold -- off and on -- for the past 4 weeks, and the doctor said it's a viral infection, so it's knocked the wind out of my sails completely. I haven't had the strength to even turn on my computer for several days. Take good care everyone, and please let me know how you are all progressing. We give each other more support than we get from doctors!!
I don't experience any burning sensations, but I do experience numbness and tingling in both hands which awakens me. In my case, I think it may be due to the disc narrowing in my C-spine. Have you mentioned your burning/tingling and "pings" to your doctor, and if so, does he/she know what the cause is???
Regarding alternative treatments, I do see a chiropractor. I am going to see him soon and ask him about the numbness/tingling in both hands. I'm lucky that my chiropractor is exceptional in his line of work, as not all chiropractors are.
I also sometimes use my therapeutic massager to relieve muscle spasms. In the past, I have tried Guafenesin therapy and MSM and tons of different vitamin/herbal supplements to improve my health. The only supplements I now take regularly are Vit B, Vit C, and Calcium & Magnesium tablets.
Yes, people do learn to live with these dreaded conditions. I think it's much easier to cope once you find out what you're coping with (ie- a correct diagnosis). We do have to rely on doctors for a correct diagnosis, and some treatment options.
I'm happy to hear that you are still able to work, along with raising a family. I had to stop working 6 1/2 years ago at 38 yrs old, but I still haven't lost hope for the future.
Take good care of yourself, Ruth! PS - How did you do the "quote thing" in your postings???
It is very nice to meet you as well, and thank you so much for explaining the quote thing to me.
I am sorry that you have been off on medical leave from your work due to depression, but it is understandable under your circumstances. I know from personal experience how frustrating it is to have an undiagnosed illness, first with my fibromyalgia and now with my undiagnosed auto-immune disease with unexplained fevers.
The fact that you do not have pain leads me to believe that you do not have fibromyalgia. I'm wondering how long you have been experiencing the tingling problem and the unexplained fevers. I would recommend that you jump over to the lupus forum on H/W and ask a few questions. I have visited both the lyme disease forum and the lupus forum, and the folks have been very helpful. I have also read the web sites that H/W has posted in both of these forums.
I'm glad that you changed doctors based on your previous GP saying that you were having a nervous breakdown. That is such stupidity. If you ever get another doctor mentioning depression, simply say, "Depression does not cause fevers."
I asked my doctor recently which auto-immune disease he thinks I may have, and he said, "I dunno, lupus maybe." At the time, I didn't think much of it, but it slowly creaped back into my mind, so I am going to ask him to do lupus blood tests on me, and/or send me to the rheumy, who I haven't seen since my official diagnosis of fibromyalgia in 2002.
Also, I am wondering if you have been able to measure your temperature in order to see how high your fevers reach. My baseline temerature is 98.6, which it almost never is anymore. I'm doing really well if my temperature is 99.2, which doesn't happen often, and the highest reading I have got is 100.9 F. While my GP was off in 2006, I saw a locum who dx'd me with "fever of unknown origin." I looked it up on the interet, and realized that my readings have not been high enough for that diagnosis. Later that year, I saw the infectious disease specialist, and I suppose he saw the paperwork that said FUO. He told me, "You don't have fever of unknown origin." I replied, "I know, I never said that. I have chronic high-end low-grade fevers." And he said, "That's right."
The reason I have explained this is because it took a long time for the doctors to even investigate why I was getting fevers. The infectious disease specialist measured my temperature on every visit, and also asked me to chart my temperature over a period of a couple of weeks.
Anyway, Ruth, I hope you are doing OK. Keep me posted on how you are progressing.
Hi Pink Grandma,
I don't believe I have ever heard of Valley Fever? What is it? I live in Western Canada. May I ask you how high your fevers have reached? Please read today's post from me to Ruth (4sons) for more info about me. Nice to meet you, Pink Grandma.