Discussions By Condition: General well-being

Exhaustion, Fever, Muscle Pain/Weakness?

Posted In: General well-being 15 Replies
  • Posted By: Anonymous
  • August 25, 2008
  • 01:06 AM

Hi,
I have been sick since 9/07 and multiple symptoms and tons of negative test results have the doctors at a loss... any idea would be helpful!

23 years old, female, 5'7, 155 lbs.

recurrent/chronic low fever since September, a few times a week, if not daily (99-101) worse in afternoons and evening, I do not notice it when I first wake up.

Joint pain (fingers, hands, wrists, knees)

Muscle pain, weakness, and shaking (trouble opening jars, standing up from sitting, going up stairs) - seems to be getting worse and worse

Recurrent splotchy, red, flat rash on face and chest (does not itch), worse if I get in the sun

Occasional ulcers in nose and mouth

Nausea, dry heaves, occasional vomiting and diarrhea

recurrent infections (yeast, UTI, sinus, ear) I get put on antibiotics all the time... I never used to have ear infections, but now I am getting them a lot. My ears are popping a lot and have clear fluid draining from them a lot of the time.

tingling and numbness in hands and feet, and occasionally on one side of face

I have had a ton of tests and nothing major is showing up.
ANA(neg.), Rheumatoid factor (6), Lyme (neg.), sed rate (9), CMP and CBC (normal), TSH (3.67), EBV (pos. from past mono infection), CA-125 (10), PTH and Calcium (normal), Thyroid antibodies(neg.), HIV, Syphillis, and Hepatitis (all neg.), blood culture (neg.), celiac panel (neg.), Lipid panel (slighlty elevated, no meds needed now). Vitamin D (19, was given rx supplement which got it up to 32), vitamin B12 (215), ferritin (20), other blood tests all negative!
HIDA Scan (75% ejection fraction), Gastric emptying scan (normal), Upper endoscopy (mild chronic gastritis, otherwise normal), CT and U/S of abdomen/Pelvis (normal), CT of chest and head (small 5 mm hypodense lesion in right thyroid lobe, needs to be evalutated with U/S, being done thursday, otherwise normal).

Any ideas?? I am so frustrated at this point, I don't want anymore tests and my symptoms are just getting worse, but no one seems to be able to figure this out. Thanks.

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15 Replies:

  • which doctors have you been to? Have you seen a neurologist or rheumatologist?
    qwertyuiop123 453 Replies
    • August 26, 2008
    • 01:25 AM
    • 0
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  • I strongly suggest you look up lupus as those symptoms are very lupus like, that facial rash (common for lupus) and other symptoms make me think of lupus. Get lupus ruled out by your doctor. lupus can affect any organ, check out the symptoms on http://www.uklupus.co.uk/lsymp.html http://www.uklupus.co.uk/symplist.html (once that is done and anything else thought of ruled out.. post here again.. as Ive also got other ideas).
    taniaaust1 2267 Replies
    • August 28, 2008
    • 10:41 AM
    • 0
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  • Hi,Thanks for the the ideas and I am sorry it has taken me so long to post again. To address the first question: I had been seeing my PCP who is an internal med doc (She also referred me to a GI doc who did a endoscope and said I had "mild chronic gastritis and some foveolar hyperplasia?? whatever that means, but nothing noteable and I didn't have to f/u with them). The PCP was the one who ordered the majority of the tests. When I first started seeing her about a year ago when the symptoms started to get worse and the fevers started she immediatley thought I had Lyme disease or maybe Lupus. Lyme disease is very common where I live. She ran multiple different Lyme tests and all came back negative (not even one reactive strand on a single test). To check for Lupus she ran the ANA, ESR, syphillis (which I guess can give a false positive if you have Lupus). Syphillis and ANA have been negative (both were run 2x). My Sed rate was 4 the first time and 9 the second time (both totally normal) so she ruled out Lupus. I finally was referred to Rheumatologist and saw her for the first time last week. She was shocked when she saw the Mallar rash on my face, but the negative ANA results. Luckily, while I was sitting in her office talking to her about my symptoms she asked about other rashes and I told her that I often get a flat red blothcy rash on my neck, chest and upper back. If I touch or rub the skin, if I get hot or stressed, if I go in the sun, take a hot shower, drink alcohol, or sometimes for no reason at all. The rash shows up and can stay for 5 minutes or 5 hours, it just comes and goes. While I was talking to her about it I pulled down the neck of my shirt to show her the areas I was talking about and luckily my chest was covered in the rash. She said she had never seen anything like it. Again, it does not itch at all(I don't even know its there unless I happen to glance down, look in a mirror, or someone else tells me I have a rash all over my chest and neck)it comes and goes for different lengths of time, its red blotchy, flat, spots, and the doc observed that its very hot to the touch. She wants it to be biopsied, but thats kind of hard to do as it just comes and goes. There is no garuntee I would have it if I set up a time to get it biopsied. Anyway, she seemed interested in the rashes, the fever, the reynauds, and she also noticed that my knees were purple, she had a name for it and apparently it was important to her. Basically she said she has never seen anything like this, she said the presentation is really unusual and shes going to try and figure out whats going on, but if she can't she wants to send me to Mayo clinic. She said she thinks it looks like Lupus, but the ANA or one of the other 2 tests she ordered has to come back positive or it can't be Lupus (some parts of a Lupus panel I haven't had before?) She also ordered a bunch of other blood work which I have to have done and then see her again in 2 weeks. My biggest fear is that this all comes back normal and we are right back where we started. Of course, I don't want anything terrible to turn up, but I am so frustrated that all the doctors agree somthings wrong, yet all seem to be so confused by how its presenting. Oh, and I had a thyroid ultrasound to f/u on the 5mm hypodense lesion seen on a CT Scan I mentioned in my original post. The ultrasound showed a 1.6 cm solid, hypoechoic, solitary nodule in the lower right of the thyroid. They did an ultrasound guided biopsy last week to check to see if it could be mailgnant. I won't have the results for another couple days, but the vast majority of nodules are benign so probably nothing to worry about and probably not the source of the problems. The Rheumatoid doc also suggested I have a PAP since I haven't had one in awhile just to rule out any other types of cancer. Since I have had clear CT scans of pretty much my whole body at this point though she thinks the possibility of cancer is pretty low.Anyway, I will try and answer any other questions and keep this updated as soon as I get more info. any thoughts or suggestions are helpful as this whole process has me so frustrated. Im just concerned that everyone seems so puzzeled by the symptoms and the lab tests. I just would like to figure this out so it can be treated or managed so I can start feeling better. Thanks!
    Anonymous 42789 Replies
    • September 14, 2008
    • 09:11 PM
    • 0
    Flag this Response
  • Hi,Thanks for the the ideas and I am sorry it has taken me so long to post again. To address the first question: I had been seeing my PCP who is an internal med doc (She also referred me to a GI doc who did a endoscope and said I had "mild chronic gastritis and some foveolar hyperplasia?? whatever that means, but nothing noteable and I didn't have to f/u with them). The PCP was the one who ordered the majority of the tests. When I first started seeing her about a year ago when the symptoms started to get worse and the fevers started she immediatley thought I had Lyme disease or maybe Lupus. Lyme disease is very common where I live. She ran multiple different Lyme tests and all came back negative (not even one reactive strand on a single test). To check for Lupus she ran the ANA, ESR, syphillis (which I guess can give a false positive if you have Lupus). Syphillis and ANA have been negative (both were run 2x). My Sed rate was 4 the first time and 9 the second time (both totally normal) so she ruled out Lupus. I finally was referred to Rheumatologist and saw her for the first time last week. She was shocked when she saw the Mallar rash on my face, but the negative ANA results. Luckily, while I was sitting in her office talking to her about my symptoms she asked about other rashes and I told her that I often get a flat red blothcy rash on my neck, chest and upper back. If I touch or rub the skin, if I get hot or stressed, if I go in the sun, take a hot shower, drink alcohol, or sometimes for no reason at all. The rash shows up and can stay for 5 minutes or 5 hours, it just comes and goes. While I was talking to her about it I pulled down the neck of my shirt to show her the areas I was talking about and luckily my chest was covered in the rash. She said she had never seen anything like it. Again, it does not itch at all(I don't even know its there unless I happen to glance down, look in a mirror, or someone else tells me I have a rash all over my chest and neck)it comes and goes for different lengths of time, its red blotchy, flat, spots, and the doc observed that its very hot to the touch. She wants it to be biopsied, but thats kind of hard to do as it just comes and goes. There is no garuntee I would have it if I set up a time to get it biopsied. Anyway, she seemed interested in the rashes, the fever, the reynauds, and she also noticed that my knees were purple, she had a name for it and apparently it was important to her. Basically she said she has never seen anything like this, she said the presentation is really unusual and shes going to try and figure out whats going on, but if she can't she wants to send me to Mayo clinic. She said she thinks it looks like Lupus, but the ANA or one of the other 2 tests she ordered has to come back positive or it can't be Lupus (some parts of a Lupus panel I haven't had before?) She also ordered a bunch of other blood work which I have to have done and then see her again in 2 weeks. My biggest fear is that this all comes back normal and we are right back where we started. Of course, I don't want anything terrible to turn up, but I am so frustrated that all the doctors agree somthings wrong, yet all seem to be so confused by how its presenting. Oh, and I had a thyroid ultrasound to f/u on the 5mm hypodense lesion seen on a CT Scan I mentioned in my original post. The ultrasound showed a 1.6 cm solid, hypoechoic, solitary nodule in the lower right of the thyroid. They did an ultrasound guided biopsy last week to check to see if it could be mailgnant. I won't have the results for another couple days, but the vast majority of nodules are benign so probably nothing to worry about and probably not the source of the problems. The Rheumatoid doc also suggested I have a PAP since I haven't had one in awhile just to rule out any other types of cancer. Since I have had clear CT scans of pretty much my whole body at this point though she thinks the possibility of cancer is pretty low.Anyway, I will try and answer any other questions and keep this updated as soon as I get more info. any thoughts or suggestions are helpful as this whole process has me so frustrated. Im just concerned that everyone seems so puzzeled by the symptoms and the lab tests. I just would like to figure this out so it can be treated or managed so I can start feeling better. Thanks!
    Anonymous 42789 Replies
    • September 14, 2008
    • 09:12 PM
    • 0
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  • Has she checked for still's disease? Do you have any birthmarks? Does the rest of your family have raynauds or just you?
    qwertyuiop123 453 Replies
    • September 15, 2008
    • 03:47 AM
    • 0
    Flag this Response
  • I am not saying this is a CAUSE of all of your symptoms, but a B12 level of 215 is VERY low! Get on the B12 misdiagnosis thread and post your info there - this is underdiagnosed and can cause irreversible neurological damage. You very well may need injections of methylcobalamin. I would still not rule out Lyme even with all those tests. You should be tested again thru Bowen or Igenex labs. Since your rash comes and goes I would keep a strict food diary and write down ALL the foods and drink you consume daily. Mark when you notice the rash developing. There may be a pattern of food allergy there contributing to this problem that you haven't yet noticed. You show signs of autoimmune dysfunction, but sorry I cannot offer any other insight. Have you seen a good endocrinologist? Lastly, were you on any medications prior to your symptoms developing? With your history of antibiotic use you likely have candida overload, which can mimic your autoimmune symptoms. Have you researched candida and done a good candida cleanse? Best wishesDOM
    acuann 3080 Replies
    • September 15, 2008
    • 04:04 AM
    • 0
    Flag this Response
  • Okay, today I got back the biopsy results on the thyroid nodule and it is benign (which was expected) and good news. For now they are checking my thyroid levels again and considering starting a low dose of synthroid. they will do a f/u ultrasound in 6 months to make sure the nodule is not changing or growing (I did see a really good endo to have the thyroid nodule evaluated and they are aware of the other stuff going on, but do not have any idea what it could be, they want the rheumatologist to handle looking into it for now). I also had all the bloodwork ordered by the rheumatologist done today (9 vials of blood...), so hopefully some results soon.To answer some of the questions posted: the rheumatologist and the PCP both thought of Still's disease, but with Still's I guess it is very common to have a high ferritin level and my ferritin level is actually a little low (or it was the last time it was checked 9-12 months ago, it was 20). The doc included a ferritin level in the new blood work that was done today though to check and see if that could be it. As far as I know, no one else in my immediate family has reynauds, just me. I do have a couple very faint birth marks (probably only 1-2 inches) and a few moles, but no big or very noticeable birthmarks. My PCP did say the B12 was low and advised I take 1000 mcg vitamin B12 daily. I have been doing this for about a year and have not noticed any changes, I am going to ask they re-check my levels soon to see if they have improved.The PCP and the rheumatoid doc seem to think that it def. can't by lyme based on the tests run and when i asked about going to a lyme specialist they were very opposed. They are under the impression that the lyme docs are going to put my on an IV and pump me full of antibiotics regardless of whether lyme is really the issue or not. If they cant find anything else wrong, I will ask them again about more Lymes tests.In regard to the canidia idea, I had blood cultures done, would that have picked up something like that?Thanks again for all the advice and ideas. I will post again as soon as i get some results back on the labs. Thanks!
    Anonymous 42789 Replies
    • September 16, 2008
    • 00:20 AM
    • 0
    Flag this Response
  • MM, I just read your thread and I am very interested in the latest developments. I have symptoms very, very similar to what you have described. Rashes that come and go all the time, extreme fatigue, negative bloodwork (except RF- I was actually dx'ed with RA this past April but they say it is very mild and wouldn't cause extreme fatigue), daily fevers for 9 months (99-100 worse in evening), swollen lymph nodes, etc. No one can figure me out. Fatigue is by far my worst symptom and it is disabling. I have 2 kids under 10 and cannot care for them at all. Would love to hear more!
    casiesea 1 Replies
    • January 4, 2009
    • 09:51 PM
    • 0
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  • Hi, I have had the same symptoms for the last 4 years. 19 specialists later and multiple diagnosis's I finally have a answer. Dermatomyositis. Do you get a itchy head sometimes? Every have problems swallowing food? Is it very difficult at times to walk up a flight of stairs? When you try to do something that requires you to hold your arms over your head is it very difficult? I you are saying yes to 2 or more of the above along with your current symptoms this is probable it. Check out the Myositis Association site.Best of luck to you.
    Anonymous 42789 Replies Flag this Response
  • See if your MD will test for the anitbody U1-RNP. I had a rheumy test for it. He felt as if there was something autoimme going on. I was +. It is a specific test for MCTD.
    msnova74 20 Replies Flag this Response
  • One other thing to look at might be FMF (familial Mediterranean fever)Good luck
    Anonymous 42789 Replies Flag this Response
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  • seeing you've now had stuff like lupus ruled out.. Sounds like chronic fatigue immunity dysfunction syndrome also called CFIDS. A lupus like rash "can" appear in this illness and other strange rashes too. CFIDS can cause ALL your other symptoms too (Ive had over 87 symptoms with it). http://wwcoco.com/cfids/bernesx.html is a good place to start your research and as you can see on the CFIDS symptom list (based on studies) how common the facial rash may be "Rash or flushing of face: 35-45% " I myself just get weird rashes at times over my body with it............. CFIDS is a very misunderstood illness which most 95% of doctors not being in the know very much about it at all. The CDC say that 80% of patients with this are sick and undiagnosed. You probably will have to find a doctor who specialises in the illness.. or find the info yourself and present it to your doctor (who can further research). best luck
    taniaaust1 2267 Replies Flag this Response
  • I have most of your same symptoms you have. I have had these symptoms for almost 20 years with each year getting worst and worst. The last two months I can not even get out of the bed. The pain is so severe. I feel like my whole body is going to fall to the floor when I try to stand up. I have an off and on fever everyday, mostly in the evening. I have lost nearly 50 pounds in the last few months. Most of my symptoms are negative. At times lately I feel like I am dieing. The doctors are not hearing me or understanding how much this hurts. Anyone with any ideas? Hi,I have been sick since 9/07 and multiple symptoms and tons of negative test results have the doctors at a loss... any idea would be helpful! 23 years old, female, 5'7, 155 lbs. recurrent/chronic low fever since September, a few times a week, if not daily (99-101) worse in afternoons and evening, I do not notice it when I first wake up. Joint pain (fingers, hands, wrists, knees) Muscle pain, weakness, and shaking (trouble opening jars, standing up from sitting, going up stairs) - seems to be getting worse and worse Recurrent splotchy, red, flat rash on face and chest (does not itch), worse if I get in the sun Occasional ulcers in nose and mouth Nausea, dry heaves, occasional vomiting and diarrhea recurrent infections (yeast, UTI, sinus, ear) I get put on antibiotics all the time... I never used to have ear infections, but now I am getting them a lot. My ears are popping a lot and have clear fluid draining from them a lot of the time. tingling and numbness in hands and feet, and occasionally on one side of face I have had a ton of tests and nothing major is showing up.ANA(neg.), Rheumatoid factor (6), Lyme (neg.), sed rate (9), CMP and CBC (normal), TSH (3.67), EBV (pos. from past mono infection), CA-125 (10), PTH and Calcium (normal), Thyroid antibodies(neg.), HIV, Syphillis, and Hepatitis (all neg.), blood culture (neg.), celiac panel (neg.), Lipid panel (slighlty elevated, no meds needed now). Vitamin D (19, was given rx supplement which got it up to 32), vitamin B12 (215), ferritin (20), other blood tests all negative!HIDA Scan (75% ejection fraction), Gastric emptying scan (normal), Upper endoscopy (mild chronic gastritis, otherwise normal), CT and U/S of abdomen/Pelvis (normal), CT of chest and head (small 5 mm hypodense lesion in right thyroid lobe, needs to be evalutated with U/S, being done thursday, otherwise normal). Any ideas?? I am so frustrated at this point, I don't want anymore tests and my symptoms are just getting worse, but no one seems to be able to figure this out. Thanks.
    Anonymous 42789 Replies
    • September 8, 2010
    • 04:00 AM
    • 0
    Flag this Response
  • have you got reply to all your symptoms, if yes no problem, otherwise take thiseven I had very very similar problems / almost all symptoms, but as usual all tests negative (LFT, scanning, UTI, migrain, sinus infection, inflammation, etc.etc.), ultimately only medication which worked after all others failed, is iron tablets for 30 days and b-complex for 30 days, it was ultimately diagniosed as general weakness (insufficient vitamins / minerals) due to climate changes and urban life style (especially junk food, lots of coffee, tea, cocoa etc.) also involving lots of menatal stress, this happened 8 years back, after that, whenever I come across similar symptoms, doctor relies on that history and prescribes b-complex tablets say for 15 days or so and every thing is normal, so if possible try it out
    Anonymous 42789 Replies
    • November 23, 2010
    • 06:39 AM
    • 0
    Flag this Response
  • Try checking Hashimoto's antibodies through an open minded endocrinologist. While I have many of your symptoms, don't have all and thyroid appears to be within "normal" range but because I have antibodies, decided to try me on synthroid. It improved, but as time went on I became bedridden with exhaustion, tendinitis and joint and muscle pain and extreme exhaustion and T3 was added which has been making a dramatic improvement. Hashimoto's is sn autoimmune thryroiditis and T3 is essential. It can take years to determine right disagrees, as your body adjusts and the disease goes through its thing. Still have Raynauds and facial rash, negative to Lymes. Still have many symptoms of auto immune. But if you look up the site "stop the thyroid madness" and take the "long and pathetic list of symptoms" I guarantee you'll feel exonerated. Most doctors base treatment on test results alone. You need to be your own advocate and push for what you want or find a doctor that will think outside the box. Hope this helps.
    Anonymous 42789 Replies Flag this Response
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