Discussion in 'Fibromyalgia Main Forum' started by Chris3251, Dec 4, 2006.

  1. Chris3251

    Chris3251 New Member

    I am SO BEYOND frustrated!! For 3 weeks I have been battling yet another infection. Is it normal btw with FM/CFS to have all these bacterial infections? I've had several strange, unexplainable infections which have landed me in the hospital several times over the past year. One even went into blood poisoning.

    Anyway...3 weeks ago I had this horrible swelling start where the parotid gland is, along with pain and intermittent low grade fevers. When I went to my family dr. she suspected a parotid stone and prescribed Cleocin which is an antibiotic. I had JUST finished taking Keflex for cellulitis in my leg. That took some of the swelling down but only a little.

    Last week she sent me to an ENT who was nothing short of a quack! When discussing my medical history he totally blew me off and maybe its just his personality but he spoke to me literally like I was a 5 year old. He didn't want to prescribe another antibiotic because he didn't want to add a yeast infection to the mix. He said just to continue with moist heat, push fluids and rest and all would be fine by today.

    NOTHING has changed and in addition to all that its now somewhat numb going down the jawline along with a tingling sensation almost to my throat. I've been trying to call their office all morning. First I get someone who does nothing but takes a message. Then someone calls only to say the dr is in surgery and will have to call me back, so I'm getting nowhere fast. I know if I go to the ER they'll run all their tests so they can make a buck and tell me to call one of my drs back for a followup.

    Add to all that the fact that I am hurting EVERYWHERE right now. I didn't want to get out of bed for nothing today, I am SO tired I can't stand myself! Even stretching is miserable. Walking is miserable, you name it. I've been off work with this for 2 weeks so now I have to apply for short term dis. through my employer again which is a whopping 60% of my salary. I'm already in dire straits financially, getting ready to lose my house to foreclosure and probably having to move back to IL sooner than I had planned and I wanted time to get through the sleep studies and get a concrete diagnosis before changing doctors once I get to IL.

    When will all of this stop?? I feel like I'm caught in a downward spiral and I'm so overwhelmed I don't even know which end is up right now.
  2. Chris3251

    Chris3251 New Member

    Ok now I'm in tears. The ENT wants to do another round of antibiotics after just saying last Wed. he didn't want to. I asked what am I supposed to do about work, he said to call my family dr to see what she wants me to do since she initially referred me to him. What the heck is that all about???
  3. lurkernomore

    lurkernomore New Member

    Dear Chris,
    As I read your post I am feeling so terribly for you. I think I should be counting my lucky stars right now that my rheumatologist is as quick on the uptake as he is because he really has minimized my grief and frustration.

    My last appt. with him he was doing the usual poking and prodding and noticed that my glands under my face and head were tender and swollen. He began asking questions and I answered him as best I could. Then he asked if I had heard of an autoimmune syndrome called Sjogren's. I definitely have and told him a first cousin had it. That peaked his interest even more because right now it is believed to have a genetic component to it.

    He did bloodwork and we are set to begin a treatment plan when I return to him on the 15th. I apologize for this being so long but I wanted to throw this out as a possibility for you to bring up with your doctor. I do need to add that I am not certain that my GP would have been as quick to recognize the the symptoms as my rheumy was, so I hope you are under a rheumy's care.

    A few more questions that he asked that you may want to be thinking about are the following:

    1. Do you have an extremely dry mouth or worse dental health? This excludes the dry mouth which one can experience as a result of medications.

    2. Do you have problems with dryness in other areas, such as the eyes, ears, and sinuses?

    3. Do you have family members with autoimmune dieases, such as Lupus, Rheumatoid Arthritis, etc?

    4. Do you have swollen or tender glands in any other areas, such as the underarms or groin area?

    5. Any nausea or vertigo? (The dryness in the ears can sometimes make this a big problem.)

    I wish you the best of luck on your quest to find the cause of your problems. And I want to be clear that I hope you do not have Sjogren's. But the good news is that, with a proper diagnosis and recognition of your problems, there are treatments which can help. Again, I am sorry this is so doggone long. Did I mention that Sjogren's contributes to brain fog much like Fibro does? LOL!
  4. lurkernomore

    lurkernomore New Member

    Bumpity, bump,, this board moves fast! Just trying to keep this from getting bumped back and overlooked.
  5. lurkernomore

    lurkernomore New Member

    This sounds all too familiar too Chris! If one doc tells you something and you have the nerve to question it, they now have the wonderful option of passing you on! Yeahhh, must be fun to be them, huh?

    Actually that was very sarcastic and I just surprised myself. Okay, not completely, but you get my point, right?

    I am so hoping that you are under a rheumy's care because it sounds as if you are either in a full blown flare or something else is going on that a rheumy may be may more inclined to do bloodwork or other testing for. I'm keeping my fingers and toes crossed for you!
  6. Chris3251

    Chris3251 New Member

    I've seen the word mentioned in reading on FM/CFS, but I haven't really looked into it. I did just do some reading but I think I'm overwhelming myself. I have an appt. with my rheumatologist on Wed., and I'm definitely going to ask her about it. I'm making a list of questions about this and other things that I've read from the boards and been experiencing myself.

    I called my family drs office, they're going to discuss it with the doc this afternoon and call me back to see if she wants me to stay out the rest of the week or what.

    I really appreciate you taking the time to educate me. I feel so lost today, and of course the high emotions aren't doing me any good. My employer has an EAP program and I'm beyond just being upset so I'm giving them a call, I desperately need an outlet more than I thought.
  7. Chris3251

    Chris3251 New Member

    I can handle sarcasm, I'm usually pretty good about dishing it out

    I am under a rheumatologists care. I was just diagnosed within the past month after I was referred to her. I've probably spent too much time trying to deny the diagnosis and dealing with the frustration of not being able to do even the simplest of things. Plus I have a relatively strong personality, I've never been one to ask for help and I tend to take on huge projects where I go full force until its done. Now that's all changed which I'm trying to deal with but this latest problem, whatever it is really threw me into a tailspin of a meltdown.

    Luckily my rheumo is a great listener and I think I was fortunate enough to find her. Of course I'm just getting to know her but so far I'm very satisfied and I only hope I can find someone like her when I move back to IL.

    For now though I just have to know what this newest problem is and get rid of this so called ENT "specialist" as he's been nothing but an absolute joke.
  8. lurkernomore

    lurkernomore New Member

    Chris, I am really hopeful that your rheumy will be willing to investigate all possibilities when you see him. A Sjogren's flare is so very similar to a Fibro flare with pretty much the same types of pain, insomnia, and vertigo issues.

    After reading and learning what I have about Sjogren's on Sjogren's World site, so very many people there were diagnosed with Fibro first. Not saying they were misdiagnosed, they still have Fibro. It just came before the Sjogren's. Amazing and yet sad to me.

    Anyway, I just want to let you know that it is your right to have the proper testing done. If you'd like to visit the site, there are some great lists of things to carry to your doctor's visit. I hope this helps you. I know what it is like to feel so terribly that you don't know which way to turn.

    One more thing, if you do get the diagnosis, prepare to find a more informed ENT. Oftentimes, due to the involvement with the ears and no moisture there as well, an ENT is an invaluable source. So make sure yours is a great, well informed one so you do not have to be batted around like the ping pong ball once again.
  9. Chris3251

    Chris3251 New Member

    My employers benefits dept. sent over a request to the ENT for doctors notes, etc. to make a determination on my short term dis. request. Not surprising, he didn't send much of anything so of course they're holding on to my request which means no income until they get what they want. I have $20 in my pocket with 2 more drs visits to worry about in the next 2 weeks and I'm gonna have to beg and plead that they bill me for co-pays.

    I called my family physicians office and spoke to them ALOT today. They're going to just take over the case so they can send the physicians notes and get this thing approved. Then depending on what my rheumo. says tomorrow, the rheumo. may have to take it over. I told my family dr. if they ever have to refer another pt. to an ENT, don't even bother with this guy. Perhaps its coincidence, but as soon as I mentioned FMS/CFS he took a total hands off approach and my family physician is about as disgusted as I am.
  10. lurkernomore

    lurkernomore New Member

    Well, this is just enough to make one nuts isn't it? I don't think I am breaking any rules here as I am not posting a URL and have seen this site posted here before.

    Please do try to visit the Sjogren's World site when you can. It answered so many questions I have had and is a great source of education. Hang in there, I am pulling for you!
  11. Chris3251

    Chris3251 New Member

    I have a followup with my rheumy this morning so I'm going to bring it up. I started Z-pac 3 days ago, I'm waiting for it to do something...ANYTHING.

    I've been making a list of questions to ask this morning since my FM/CFS diagnosis is so new and I'm going to check out the website you suggested to see if it ties in in any way.

    I think I've been going thru a flare the past few days. Today isn't too horribly bad but the past few days I've just been in AWFUL pain and all I wanted to do yesterday was sleep. I hope I snap out of this soon. It's really difficult trying to do all this on my own.
  12. lurkernomore

    lurkernomore New Member

    I hope you find something out at your appt. Please let me know what he has to say! I care very much!
  13. Chris3251

    Chris3251 New Member

    I sent an update under a new topic...I guess that was kinda silly but then I'm not thinking very well today.
  14. lurkernomore

    lurkernomore New Member

    Do you remember which topic you posted your update under? I am really interested in reading your update. I hope you can get a proper dx. soon. I will say that my own rheumy told me that 65% of blood tets for Sjogren's come back negative but if the sed rate or C-Reactive protein levels were elevated, he went by that, along with his physical finding and symptoms.

    So my test for Sjogren's itself were negative, but my C-Reactive Protein was high. I go back to him on Friday and we will discuss beginning a treatment plan. I have also seen an opthamologist since then and he was amazed at how much inflammation I had in my corneas, so I will have seen him twice since my rheumy appt. He said if he had to say anything, he'd say I have eyes which indicate a disease like Sjogren's, as in no moisture and much inflammation.

    I will most likely be having the punctal plugs put into my eyes soon. Now if they could just figure out some way to save my teeth as they are decaying like wildfire from the lack of saliva. I am rambling so I will close now and wish you the very best.

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