How were you diagnosed with CFS/CFIDS/FMS?

Discussion in 'Fibromyalgia Main Forum' started by SleepySmurf, Dec 15, 2005.

  1. SleepySmurf

    SleepySmurf New Member

    Hi. I'm new here.

    I want to know ... what is the least common denominator to diagonse these illnesses?

    The doctors don't know what's wrong with me. All the bloodwork is normal. Sed rate is 9 (I'm age 34). Thyroid is normal. ANA is negative. RF is negative. I'm negative on the pressure points for FMS.

    I presented to my Rheumatologist with a low fever of 99.9 F, so he didn't accuse me of hypochondria like my PCP did.

    I'm so frustrated because my family thinks I'm just an out-of-shape hypochondriac. I'm very alone in all of this. I'm also frustrated because I used be a workaholic, Type-A personality who ran two optometry clinics. I used to work 50 hours a week or more. Now, I can only work 3 days per week, 24 hours a week. If I work more, I drop.

    This syndrome started about five years ago with a flu-like illness that lasted exactly 6 weeks. It initially seemed like a stomach flu. My father, who took care of me, told me I looked jaundiced. I wondered if I'd accidently been poisoned through the air vents that connected my optometry office with the garden center of a Fred Meyer store ... you know ... some sort of pesticide toxicity. The fatigue was so extreme that I could barely walk. This was the worst presentation, and has never been this severe since. Thank God!

    This initial period was followed by six months of fairly extreme fatigue. I was tested for HIV, EBV, Lyme, Cat-Scratch Fever, Toxoplasmosis. All negative. The doctor's last tentative diagnosis was Chronic fatigue secondary to presumed Cat-Scratch disease. (I had history of a good deep cat scratch, and I was tested AFTER the 6wk illness was over, so the titers were negative. To get a postitive for Cat Scratch, you must test when you're at your sickest).

    Then, it went into remission, although my energy level was never the same as it was before the initial flu-like illness.

    The fatigue resurfaced, very subtly, starting six months ago. Each month, the fatigue gets worse. More wierd symptoms occur each month. I'm now thinking of taking a medical leave of absence ... to get a final diagnosis and some sort of treatment.

    My Rheumatologist thought it was Lupus, and not FMS/CFS because of no sensitive pressure points and because I have history of lots of canker sores. But ... ANA is negative, so not Lupus.

    I have strange sleeping habits. For past two months, I need an afternoon nap. I awoke feeling good, until 1PM. Problems occurred when I needed this nap while on my job. Employers and patients are not to happy with a sleepy optometrist! LOL! The desire to sleep is so overwhelming that I'm nodding off while flipping the lenses in the phoropter.

    And now ...

    In the last few weeks, since my first Rheumatology appt, my symptoms have worsened: Since I started forcing myself NOT to take an afternoon nap, I am now in insomnia hell. I haven't slept for four days straight. My whole body feels numb. Canker sores. And I have a strange numb area in the middle of my back around T10, the numbest spot on my body. I'm also rather grumpy because I can't sleep. The mylagic and joint pain has ceased, mostly because of the Naproxen I've started taking.

    I don't have an Rx for sleeping pills, so I'm taking high doses of dyphenhydramine and chlorpheniramine near bedtime in hopes of alleviating the insomnia. I take two pills of each. I have had little success though. I awake with less phlegm though! I can't sleep, but my sinuses are clearing and I can start to smell things again.

    I also don't take caffeine anymore. That's not an issue.

    I'm going to put myself on the Guaifenesin Protocol. The pills should arrive tomorrow or Saturday. I am in healthcare, so I know to be careful. This doctor will just have to heal herself, because no one else seems to be giving me any help.

    Anyway, what was the bottom line sympom that clenched your diagonosis ... the one thing that made your Dr. say "Yes, Fibromyalgia. Yes, CFIDS." ???

    I REALLY appreciate any advice.

    Thank you, and Merry Christmas!

  2. alaska3355

    alaska3355 New Member

    but with my son, it seemed to be the absence of everything else. Like you, he tested negative for lyme, thyroid was normal, etc. etc. So they told him he probably had chronic fatigue syndrome and sent us home. No help for it either. So, like you said, you're on your own. We've been to regular docs, and didn't get any help there. We've been to a doc that specializes in nutrition and prevention, and he's also treated chronic fatigue- he's been more helpful. But our son is still not nearly like he was 13 months he's 25 lbs. lighter. Wish I had more answers (don't we all?) Terri
  3. KelB

    KelB New Member

    You sound like me - I have CFS but not FM. They're not necessarily going to happen at the same time.

    It started for me in Aug 04 with a 24 hour stomach bug. I recovered from that but felt "off" from then on. After a week of feeling queasy I noticed a balance problem. This intensified over the next month, being diagnosed variously as labyrinthitis and vertigo. That wore off Oct/Nov 04 and left me with the crushing fatigue and sleep problems that you describe, plus some nasty mental confusion (known in these parts as "The Fog"!) that meant I had to go part time at work. I was eventually signed off completely for 5 months.

    My GP first mentioned Post-Viral Fatigue in Dec 04, a Gastroenterologist gave a working diagnosis of CFS in Jan 05 and that was confirmed by a Rheumy in Feb 05 - exactly the statutory 6 months after the trouble started.

    The Rheumy discounted FM, as I have no joint pain (other than stuff I'd had historically as a result of Hypermobility Syndrome) and no tender points.

    All my blood work came back normal apart from the fact that I have low ferritin (iron) levels. However, the Gastro was confident that this wouldn't account for the depth of the fatigue that I was experiencing. A course of iron supplements didn't seem to help much.

    I also had an MRI to check for lesions on the brain (a possible starting point for a diagnosis of MS instead of CFS), but this was normal as well.

    A top tip for insomnia is to rest regularly during the day, but try not to sleep. And when I say rest, I mean lie on the bed or sit comfortably and relax your body, but relax your mind as well by doing breathing exercises, meditation, listening to a CD of nature sounds etc. Apparently you need to be properly rested during the day in order to have a chance of sleeping properly.

    Whatever you do, don't force yourself to be active through the fatigue as this makes it worse. Listen to your body - it's frustrating, but try not to fight it.

    Hope that helps.
    [This Message was Edited on 12/16/2005]
    [This Message was Edited on 12/16/2005]
  4. springrose22

    springrose22 New Member

    Sounds to me like you have CFS but not Fibro. Online, you will find a lot of good information, one good site is This is the main site for the Fibro and Fatigue Centers which have sprung up all over the U.S. in the last two years. Dr. Holtorf started these, and I believe he had CFS himself. Two of the worst sites are the Mayo Clinic, and Johns Hopkins. Who would have thought? Don't forget this: if you try to keep up with the activities you used to do, you could get much worse, (bedbound), and stay that way. Right now, I have to go lie down. This board is also a great source of information and support. Marie
  5. tngirl

    tngirl New Member

    I was diagnosed with FMS after presenting with pain in all four quadrants for over 3 months and having the tender points.

    You said that you tested negative for the tender points, but I wonder if your doctor thought you had to have a certain number. I think the Rheumatologists criteria says something like 11 of 16. But I've read that some doctors dont feel you have to present with a certain number since they tend to "move around". Sometimes certain tender points on my body are more sore than others.

    I also have a lot of fatigue, ibs, arthritis, gerd, sleep apnea, degenerative discs, degenertive facets, diffuse esophogeal spasms. I only mention the other diagnosis because certain illnesses seem to be common with FMS/CFS sufferers.

    I think I have either had FMS a long time, only the fatigue was greater than the pain. I had only mild pain. Every doctor would do routine tests and find nothing to address the achiness and fatigue.

    Last Jan, I began to have a lot of pain with my lower back, found out through x rays and mri that I have the degenerative discs and facets and arthritis spurs all up and down my spine. (I have recent x rays that show arthritis in my feet.)My primary care doctor sent me to a physical medicine specialist to help me deal with the chronic pain.

    That doctor set me up with physical therapy, massage, ultrasound, a tens unit and ultimately prescribed other meds to deal with the pain and sleep problems. I have insomnia and what is probably a REM disorder. My pain is definitely worse when my sleep is terrible. I take Lunesta now. I also use a cpap machine for the apnea. But I had been using that for a couple years before the other problems presented.

    A few months later it seemed as if the pain invaded my whole body. Thats when I was diagnosed with FMS by the physical medicine specialist. The doctor thinks I may have Chronic Myofascial Pain Syndrome as well but thats not a firm diagnosis.

    I hope you get the answers you need.

    Have a peaceful and merry Christims.
  6. Adl123

    Adl123 New Member

    Dear SleepySmurf,
    Like you, I was a "Type A" personality. I taught school, sold jewelry in the evenings, and took painting classes, trained and showed dogs, attended meetings, on the weekends. Let me tell you what happened. Maybe it will help:

    I was at a terribly stressful faclty meeting and I felt like I was getting a sore throat. When I went to the car, I saw that my face was red and swollen. I went to the emergency where I was treated for anaphylectic shock. I was then sent to an allergist, but he just gave me meds that put me to sleep, and I needed to be able to take care of my mom.

    So, I was talking to my taxpreparer and she told me that her daughter had had the same symptoms, and gave me the name of the Dr. that helped her.

    That Dr. diagnosed me by process of elimination. After many, many, tests, including the Hepititus A,B,and C, she told me that my symptons "were consistent with" Chronic Fatigue Syndrome. She then told me to take 6 weeks off and put me on a series of megadoses of vitmins and minerals.

    After several months, I retired.(I ended up having CFIDS, Fibro and Diabetes).

    I'm sorry you are having such a hard time with getting diagnosed. What we have is hard to identify. You could have Chronic Fatigue Syndrome, or something else. Anyway, it takes a lot of tests. I wish you luck,

  7. tansy

    tansy New Member

    ME in the 80s before the name CFS was even thought of

    Mine was not a Dx of exclusion, it was based on the results of a variety of tests and reflex changes. My bloodwork has never been normal nor my EMGs, nor reflexes when tested. Yet I have had as many problems as those whose tests come back normal. Funny old world.

  8. SleepySmurf

    SleepySmurf New Member

    Thanks to all of you for replying. Sounds like I may have CFS but not Fibro.

    The ONE thing I don't have is the "mind fog."

    My mind is sharp. My memory is excellent. I feel as if I have a wonderful mind trapped in a body that won't move, that won't do the things that the mind desires. The only time I experience what might be akin to mind fog is those hours during the day when my brain and body want to fall asleep. I think my inability to concentrate is due to the onset of sleep and my trying to fight it.

    "Mind fog" seems to be a pretty consistent symptom with Fibro/CFS, and I don't have this at all. This makes me wonder if it's true CFS.

    Another thing ... when I get injured...say by cutting myself accidently in the kitchen or by a small cat scratch... I bleed a lot and it takes a long time to heal, longer that it used to. Now, I'm only 34, and a surface cat scratch should theoretically heal in 3 days, right? I got scratched a week and a half ago by my Siamese, and it still has not healed. In fact, it looked like it started bleeding again in the shower this morning. Also, I am getting canker sores that won't heal. A year ago, I could simply gargle with hydrogen peroxide when I felt one starting, and it would be gone the next morning. Now, this doesn't work--at all. The sore just gets worse and hangs on and on until it decides to go away! So this is also a weird symptom. I could be just imagining this, by over-scrutinizing everything. My platelet counts were normal. CBC was totally normal. The only abnormal finding on any test so far was a low AG ratio. Mine was 1.1. Anyone know what this is??? I think it has something to do with blood protein ratio. Both the PCP and the Rheumy ignored this finding, so it must not be important.

    My Fasting blood sugar was 91. This is within normal limits. I am slightly overweight ... not bad ... only slightly, so I suppose I'll have my Rheumy do an HBA1C test to rule out Diabetes, as diabetics take long time to heal.

    I also have joint pain that seems to wander. Weird episodes of numbness. Get headaches. Have allergies, too. The fatigue is the main thing, and I still have the malaise/achiness whether or not I'm sleepy.

    I did sleep last night though! I feel better today, but tired. Household chores just exhaust me. I try to spread them out throughout the week.

    I share many characteristics with CFS/Fibro, and then some not. I still need to rule out MS, Diabetes and maybe some clotting disorder. Thing is ... most clotting disorders are inherited and usually happen to males. No one in my family has a clotting disorder.

    Hmmm ... this helps a lot!

    I hope y'all feel better!

  9. kylesmom

    kylesmom New Member

    I still haven't 100 percent accepted this diagnosis because I so desperately want it to be something that someone can fix. I've been sick for six years.

    Your history pretty much sounds exactly like mine, especially the beginning episode. I have CFIDS but most likely not FM. I don't have the Brain Fog others talk about, but fatigue does lend itself to being forgetful, being impatient, having difficulty processing external stimuli, etc. I feel clear-headed a lot of the time, but sometimes I don't.

    I think you still have a few tests worth doing, especially to rule out MS given that you have these numb areas, but I don't think your symptoms are inconsistent with CFIDS...unfortunately.

    Welcome here.

    [BTW, I'm also relatively new around here, am also 34 (ok, I'll be 35 on Sunday, but who's counting?), and I'm also in the healthcare field!]
  10. hartogold

    hartogold New Member

    I'm sorry...That's the first thing that came to my mind and kinda what I feel like sometimes. Guess that's out of years of frustration. I do take your post seriously though. Take care and happy hollydaze!
  11. sabimax

    sabimax New Member

    I have numbness tingling face, and body parts, heat sensations especially around sides of times, pins and needles that is painful, blurred vision, vertigo, balance issues, issues with holding my hands go the opposite way brain says to and I drop eeverything on bad symptoms tend to be on humid days, or when I am overheated like a hott shower, or stress.....uncoordination...

    ok cant think...but went toa MS specialist..and he said MRI clear...not MS said its fibro...without even apain pressure touch what do you think..??? sarah

    unsure here...I do thinkfibro might be cause of my aches but these other things I just dont think fibro related...does anyone else...
  12. Juloo

    Juloo Member

    The things you talked about, and the only test that was abnormal -- the low AG ratio: I put "low AG ratio" in Google and came up with a site about reading a really good blood profile. The following was the only thing mentioned:

    Low AG ratio: "A sub-clinical hemophiliac condition which can cause joint space to puff with blood, with small bleeding around nerve roots."

    I put in "AG ratio" and one of the first articles that came up was an abstract of a study that looked at hypertensive patients. One of the other indicators they found was the An AG ratio was significantly higher in subjects with high "plasma renin activity". Others here -- help me out. Isn't this high plasma renin activity similar to the fiber activity that the FFC centers (and others) have been trying to overcome using heparin?

    But reading above would mean that you have the *opposite* of that, which your personal experience w/the cat scratch would tend to support. I would push your doctors to explain the low AG ratio instead of dismissing it.

    And I'm not too certain that your proximity to pesticides may not be playing a part. As an architect, I am absolutely STUNNED that your air vents are somehow connected (???!!!) to another tenant space. If that were my office, I'd be riding the local building inspector so hard that he'd wear a saddle to work.
    [This Message was Edited on 12/17/2005]

    So then I cross-Googled "pesticides" and "bleeding". I came up with a number of references to pesticides that are "second-generation" toxins, anticoagulants that kill by causing internal bleeding."

    Yes, definitely follow up with your doctors. PUSH!
    [This Message was Edited on 12/17/2005]
  13. jakeg

    jakeg New Member

    I had multiple tests done before they came to the DX of FM and even had a couple of the techs mention that maybe it's all in my head, but I have all 18 of the TDPs. I don't know why they insisted on all of the tests that were done when all of the TDPs were there.
  14. Dee50

    Dee50 New Member

    I was Dx'ed with CF when my bloodwork came back with EBV active. And I had just pulled myself out of bed after being down 5 or 6 months.

    Well that's a start but...I've got other stuff going on Testing as I can, still very ill.

    Take care,
  15. SleepySmurf

    SleepySmurf New Member

    Low AG ratio: "A sub-clinical hemophiliac condition which can cause joint space to puff with blood, with small bleeding around nerve roots."


    That may account for my slow healing and for my tendency to bleed a lot with small surface wounds.

    I'll have to ask about that.

    My Rheumy thought that I looked anemic, and said that one can be anemic and not have it show up on routine CBC. Of course ... ahem ... my Rheumy is, well, quite Black. He's from Africa--literally. HA! He speaks perfect English though, and I forgot to ask where he's from. His first name is Edward, so I assume he's probably from one of the former English colonies. Anyway, I'm ... ahem ... very, very white. In fact, I'm so white that white people have called me "Caspar" when I'm in a bathing suit. This makes me really angry though, and few dare to make such comments, now. HA!

    Oh Man! I wonder what my Rheumatologist must've thought! He probably took one look at me and must've thought that I'm the whitest person he's ever seen!!! And of course -- he'd check for amemia.

    I like my Rheumy though. He's cool.

    And no offense to any persons of color here! I'm just joking around.

    Anyhow, I'm whiter-than-white because my mother has history of Malignant Melanoma and my Dermatologist told me, when I was still a teen, to NEVER, EVER get a suntan. I obeyed, for the most part. One side effect of never tanning is that after some years ... your skin no longer changes color ... at all. It's like the Melanin in my skin has disappeared. I just turn red when I burn and I don't get freckles or change colors after.

    So about this low AG ratio ... I wonder if it means that I'm a hemophiliac by low blood volume, due to internal bleeding at the joints??? Would you be able to see such a thing from the outside ... like bruising?

    And yes, when I first came down with whatever it is that I now have, I worked as an optometrist in a Fred Meyer. All the ductwork of FM stores are connected, and I was right next to the garden department, and I could smell stuff from the outdoor garden section blowing into my exam room when the fan would turn on. The fan was automatic and I couldn't shut it off. I also didn't have any outflow from my exam room. I had to keep the door shut all day, so I suppose there could've been a cumulative buildup of chemicals.

    I work in a different FM location at present, and the ductwork is the same. This time, I'm connected to a Cold Stone Creamery (Ice Cream) and also connected to an insurance place. I can smell the ice cream when the fan blows. Can't smell the insurance place. One difference: I'm on the outside of the FM store and not inside, so I'm not sure if the ductwork is connected to the inerds of the FM store.

    Also, I now have two air purifiers and an extra fan blowing at all times in my exam room, so I don't get anymore bad air. The purifiers have helped tremendously.

    Yeah ... it is entirely possible I got exposed to pesticides or herbicides.

  16. tansy

    tansy New Member


    It took me ages to get my head around this because my platelets were always low; however test showed high fibrinogen as well. Tx, in my case using just enzymes, led to a proportional rise in my platelets and lowering of my fibrinogen levels. I was Dx with thrombocytopenia and had all the classic signs, now it's just petechial rashes which only occur as a result of physical straining. No more unusual bruising and no more problems with bleeding when I cut myself.

    Since I found at about this 3 other relatives have been suspected of having a clotting disorder, lupus, and/or vasculitis. I was Dx with lupus in the 80s, but the specific anitbody test used then turned out to be negative. What I learned is helping other family members too. :) The same relatives are prone to problems/symptoms many here would recognise.

    When looking at the triggers for coagualtion cascades there were more light bulb moments. Atm I am doing well on plenty of fish oil, turmeric, and natto. Treating my infections and keeping my inflammation under control has helped as well.

    love, Tansy
  17. jane32

    jane32 New Member

    I had a bad vrial bug for about 6 weeks. AFter about 10 days I knew somehting was not right and went to my regular dr. and asked for bloodwork-he thought I was nuts but my fever of 100 was not going away. I kept seeing my regular dr, for about a month-he felt I was a hypochondriac too and told me to ignore my fevers. I dumped him saw about 22 drs. from March 05-Sept. 05. I also pushed each dr,. to give me Mri's , CT scans and tons of bloodwork. I diagnosed myself and then saw a cardiologist and rheumy who told me it was CFS. I was referred to the FFC centers and have been going since Oct. I am starting to feel better so I have high hopes of a recovery! through everything I learned that mainstream medicine sucks and you have to be your own dr. and fight for what you want otherwise you will just suffer.
  18. SleepySmurf

    SleepySmurf New Member

    Platelet levels are normal--356. Normal range is 150 to 405. So why clotting probs? I have no idea. Maybe I'm overanalyzing everything.

  19. Moonshyne

    Moonshyne New Member

    Sounds like CFS to me Sleepy...

    I have many of the same symptoms... the memory issues sometimes don't come til years later tho.... I know mine got worse as time marched on.. as did other symptoms..!

    But I also get new ones that come and go now, like the strange tingling, twitches, joint pain, etc. My knees are gettin' really bad now, but I think arthritis is settling in nicely there!

    I see a Rheummy monday.... yippy!!

[ advertisement ]