Sinus or FM/CFS doc says no sinus infection its FM???

Discussion in 'Fibromyalgia Main Forum' started by greatgran, Jul 24, 2010.

  1. greatgran

    greatgran Member

    I am so confused I feel like I have a sinus infection without the cold like symptoms.. So go to the doc and he says no infection, its just part of FM/CFS.. I also have a ear ache from time to time, ears ring 24/7 and can feel my heart beating in them at times. Also head congestion, allergy testing negative.. Lyme negative I just wonder what the heck is wrong with me ..

    My body aches so bad I could cry, this darn feeling in my head , could all this be FM/CFS?
    I am sore and at times feel I don't have the strength to move my muscles feel so weak..
    Oh, for a good doc with some answers.

    While I am here I have a long distance friend who is trying pure cordyceps and she has gone from a wheel chair to mowing her lawn in a week.. Hard to believe..

    Thanks needed to vent,

  2. DayByDazey

    DayByDazey New Member

    I'm no Dr & I'm not suggesting you try this. But, have you tried taking 1 sinus congestion pill, or Mucus out. I have dry nose passageways but I still feel like something is there. I use saline nasal spray sparingly for the dryness. I too have 24/7 ringing in the ears. My eyes are dry & my optho prescribed FML S.O.P. 0.1%. I have to see my optho every 6 mo's since I take Voltaren.
    The achy breaky pain takes me down too. Friends & family disappear. I'm no fun or out on the town anymore with them so out of their loop. My 2 4-footed buds are true blue tho. They're fighting fleas. So I try to take care of their miserables along with mine. I can give them their belly rubbin's with my foot. I wish they could rub my back with their paws. I'm also diabetic. What I'd give this morning for a huge heart-attack-on-a-plate (Cracker Barrel biscuits & gravy) along with 2 greasy sausages, 2 sunny side up eggs & a pot of regular coffee with loads of sugar. Just dreaming. What is pure cordyceps that's helping your friend?
    Take care! Connie Sue
  3. greatgran

    greatgran Member

    Thanks for your reply..I too use saline rinse and what really helps is a nasal decongestant, not the one like sudafed but dristan.. The decongestant that starts with the O not the P (can't spell either)..

    Misery isn't it, do you think its all fm/cfs related..

    The cordyceps is some type of herb. She heard about it on the Dr Oz show from his guest Dr Andrew Weils.. Its a mushroom from china, I think.

    Yes, its nice to dream and a good bad meal every now and then won't hurt..

    God Bless,

  4. Nanie46

    Nanie46 Moderator

    I still believe it's Lyme and possible coinfections.

    A negative test means nothing.
  5. greatgran

    greatgran Member

    I know and so do I but have been to endless doctors , three test and since I don't run a fever and don't have other symptoms the docs say no.. I am checking into the one in NC that you helped me fine.. thanks again.. I also ordered the igenex testing kit.. I might talk my D.O. into going for it.. but would it also be negative...

    Oh, the infectious control docs at NC won't take me since I am so normal.. lol

    Believe me if I didn't have such bad reactions to almost every antibiotic I have tried I would be taking one...

  6. Nanie46

    Nanie46 Moderator

    I hope you can find a LLMD who can help you...hopefully the one in NC works out.

    It is possible for the Igenex test to be officially negative like mine was, but it is possible at the same time for it to give you clues, like one or more Lyme specific bands might show up.

    It's worth doing though.

    Most people who finally get a Lyme diagnosis have also been to endless Docs just like you.

    Those Dr's are soooo uneducated about chronic Lyme and coinfection symptoms. I do not run fevers either. My temp is below normal.[This Message was Edited on 07/24/2010]
  7. greatgran

    greatgran Member

    What treatment are you on for your lyme.. I am sure you have told me but my brain isn't thinking today.. I think its antibiotics...

  8. sascha

    sascha Member

    are you a great gran?? i'm a gran of 18 mo. old twins. has been HUGE BATTLE for me to keep being with them regularly because of cfids/fm. if didn't want to be a stranger. i know this is such a struggle for many.

    i've been working with EFT on pain and symptoms and it helps. a lot. if you're interested i encourage you to research the technique. there is lots of inf. online, and demonstrations on youtube.

    EFT is a tapping technique you use on acupuncture/acupressure energy meridian points. it is not woo-woo. many many testimonials as to its effectiveness. i had severe chronic pain up the back of my neck into my head. really hurt. EFT got rid of it. sometimes it hints it might be coming back, and i use EFT again, and it disappears. i'm gradually working on many aspects of cfids and i am making progress. as EFT practitioners say, even if in doubt, try it. try it on everything/anything. i have been amazed at how it helps.

    the main site now carrying on Gary Craig's EFT work is EFTUniverse. good luck- it's the best thing i've found - such a comfort to have this tool that time after time HELPS ME.

    good luck! sascha

  9. Nanie46

    Nanie46 Moderator

    I am on long term combination antibiotics and lots of supps.
  10. Janalynn

    Janalynn New Member

    I know you've been suffering from this congestion for so long. I also know that you were wondering if you had FM not that long ago. So obviously you were finally diagnosed w/FM - is that when this Dr. told you your sinus problems were part of FM?

    Question - what makes you think you have Lyme? Just curious. Do you remember being bitten?

    I can only speak from the FM standpoint - YES the aching and the weakness can absolutely be FM. It can be debilitating.

    Vent away - we all need to when we feel rotten!!
  11. greatgran

    greatgran Member

    Yes, I had 3 rheumys to tell me "they think" its FM/CFS but don't know what to do about it.

    I have tried all the meds, antidepressants, lyrica, etc.. the side effects are worse , I think, than fm.. All my labs are so called normal for my age except for the elevated c-reactive protein.

    The reason I think Lyme is from my post, so many think it could be. No memory of being bitten.

    I feel I have some sort of infection with my sinuses / ears as my allergy test are negative. Been to the ENT several times and he always says sinus infection and take the antibiotic route and I do feel better for about a week for all the nasty symptoms to return.. I have had like a sinus ear thing off and on for years.

    Lately my symptoms, guess fm/cfs are getting soooooo much worse. I can do one day and in bed 3 or 4.. So doubtful all the time as to what is wrong with me..Guess I get so discouraged then the doubting starts..

    Thanks for you input and reply,

  12. greatgran

    greatgran Member

    Yes, I am a greatgran.. two little girls the sun shine of my life. But like you I don't feel up to spending the time and doing with them like I want too. They are so special and need me because my daughter has custody of them . Their Dad is out of the picture and their mom well, she is in to doing her thing..

    I haven't tried the EFT, have read about it .. Did go to a chirop. and I think that was some of the things he wanted to do but haven't felt up to going back.

    So glad it is working for you will check into it..

    God Bless,
  13. u&iraok

    u&iraok New Member

    I had sinus problems for two or three years that I noticed appeared after a cold. I took MMS for a couple months and the problems went away. Then they came back but not as bad so I took 6,000 mg of Vitamin C, 10,000 IU Vitamin D and 25,000 IU Vitamin A every day for a couple months and now it seems to be gone but it's only been about 5 or 6 months. If I eat dairy, including whey, I have some congestion.
  14. Tizz

    Tizz New Member


    Even if you've had "all" the allergy tests there might be something you're allergic to, that the tests didn't check for. You can be allergic to ANYTHING...

    I'm new to fibro and I don't know if it can cause ear congestion or allergy symptoms. I'd never heard of it doing that.

    I DO know that it can cause us to choke at night, though, because of throat spasms (fibro can cause them), and THAT can make you wake up coughing in the night (and of course, in the morning). It can make a simple cold turn into bronchitis or pneumonia, too... It's happened to me. And BECAUSE of the choking, it can be harder to get rid of a cold, too!

    I take Singulair to help reduce allergies, and my doc has prescribed Astepro the times when I'm congested, so I won't be as likely to get stuff into my bronchials or my lungs.

  15. Tizz

    Tizz New Member

    I'll get some grapeseed extract and give it a try. :)

    I do use grapeseed OIL, sometimes, for cooking...


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