FM with sinus-like pressure and fatigue. Am I alone?

Discussion in 'Fibromyalgia Main Forum' started by vleigh, Jan 28, 2010.

  1. vleigh

    vleigh New Member

    I was diagnosed in 1996 with FM. I have managed my symptoms quite well with medication-- elavil and paxil on a regular basis and zanax and ambien on occasion. While I have to watch not to overdue it (no exercise or heavy cleaning), I have functioned well. A few weeks ago a new pattern set in where I was getting 7 hours of sleep, but feeling like I had gotten 3. My most severe problem is that I experience awful sinus pressure in my eye sockets and nasal area that are preventing me from functioning well. The headache-like symptoms have always been my main problem, but now they are happening quite frequently. I have had all the tests that ruled out things like tumors. I have also taken all of the over-the-counter sinus pain meds and tried rx pain killers. Nothing works. I have never met anyone who experiences this type of pressure in the sinus area related to FM. I feel alone and confused as to why this is happening and that it has worsened lately. I would love to find someone who knows what I am talking about, especially if they have advice.
  2. TigerLilea

    TigerLilea Active Member

    Welcome to my world! I have had sinus problems for the past 19 years and I haven't found anything so far that helps. I have seen six ENTs and have had six CT scans. All anyone can tell me is that I have "perfect" sinuses. They can see that I get swollen sinuses, however, none of them can figure out the "why". It turns out that there are hundreds of thousands of us here in North Amercia who are in the same predicament when it comes to incurable or unexplainable sinus problems.

    I have been down for the past three weeks now with yet another sinus headache, feeling run down, and no energy what-so-ever. I have always believed that there has to be a connection between my sinus problems and my CFS.

    I've spent the past couple of days researching orthomolecular medicine as I have now finally accepted that evidence based medicine does not have any answers for me and going to my doctor is a complete waste of my time, and hers.

    I started yesterday taking high doses of vitamin C. Today I am taking 1,000 mg every hour and tomorrow I will up that to 1,500 mg every hour. If I don't reach bowel tollerance by then, I will go up to 2,000 mg every hour. Some people have found that taking very high doses of Vitamin C clears up their sinus problems, even if they have had them for years. Orthomolecular doctors believe that high doses of some vitamins have curative properties. At the time, Dr. Linus Pauling was ignored by the medical establishment, however, they are now starting to research some of his claims for cancer treatment. One study is finding that high dose intravenous vitamin C works just as well as chemotherapy drugs on some cancers. The best part is that the vitamin C only kills the cancer cells and does not damage the other cells of the body.

    Have you gone over to the "Sinus" board on ProHealth? It isn't very active, but you might want to have a read through everything there. I'll let you know how my experiment with Vitamin C goes.
    [This Message was Edited on 01/28/2010]
  3. TeaBisqit

    TeaBisqit Member

    A long time ago, I had severe pain like you're talking about. It turned out to be impacted wisdom teeth. After I had them all removed, I never had that pain again. My oral surgeon was totally surprised it could cause all that pain and pressure in the sinuses. If you haven't had wisdom teeth out, you should get that looked into.

    In the meantime, you can try steaming your sinuses with Friar's Balsam, it's an herbal tincture, it might help. They sell it at healthfood stores.
  4. TeaBisqit

    TeaBisqit Member

    I'm having massive sinus problems now. My doctor thinks it's a sinus infection, but she put me on Xithromax a few week ago and it didn't work. Now she wants me to take Clindamycin, but I'm scared to take it. Everyone scared me about that bowel infection it can cause. Have you ever been on that antibiotic, is it safe to take? She also gave me a steroid nasal spray to try.
  5. TigerLilea

    TigerLilea Active Member

    The first time I had an infection I was put on Penicillin and that did work that time. After that, nothing worked. I've been on Xithromax and it really bothered my stomach, but did nothing for the infection. I haven't heard of Clindmycin. I was on Biaxin several times, however, again it didn't work. I have since found out that probably the first infection was the only bacterial infection I had, and after that, they can't explain what the problem has been. They have definitely ruled out bacterial infections.

    I also take a steroid nasal spray and it does help a bit with allergies and swelling, however, it does nothing for an infection.

    Has your doctor done xrays to make sure you really do have a bacterial infection?
  6. victoria

    victoria New Member

    but what I've found that helped me finally is treatment for Lyme and its co-infections.... not sure exactly what I killed as there are so many overlapping symptoms between stealth pathogens of all kinds. Could've been the lyme or some other 'thing' like mycoplasma, CPn, who knows... but sinus problems are amongst the symptoms of these nasty bugs, and common to CF/FM/ME.

    I too was told I had perfect sinuses, surgery wasn't recommended even, I even went to one of the best of the environmental allergists... His treatment didn't work, and no RX worked for more than a month, if it did at all.

    I'm still not totally sinus headache free, but at least treatment broke the back of what had become 98% 24/7 awful headaches (I'm not kidding). I can actually go a whole week or 2 or 3 without 'em now. The fact I still get them tho tells me I need to keep up treatment.

    Don't give up looking tho, you never know what might help alleviate the symptoms or the root cause. What was weird for me was that they would suddenly 'snap' and be gone after a week of ever-worsening headaches, with or without treatment, and I'd be free of them for a couple of days ... nobody's ever been able to explain that to me.

    all the best,

  7. TeaBisqit

    TeaBisqit Member

    She didn't do xrays, but she's sending me for bloodwork. We're kind of going by the symptoms. I've got pain on the right side, I have the chills, I've got double or more fatigue than usual, low grade fever, and the post nasal drip. I still think it could be viral because it seems to be a hold over from the swine flu. But I don't know. All I know is, the post nasal mucus is horrible and I can't get rid of it.

    The xithromax had gotten me out of the pain, but did nothing for the post nasal drip. And now I have the same pain back. So I don't know if it's bacterial or what.

    Clindamycin is usually used for dental infections and some other stubborn things. It actually works on babsiosis, one of the Lyme coinfections. The problem is, this antibiotic has been known to cause serious bowel infections to the point of killing people. And that's why I'm scared of it.

    I'm willing to try the nasal spray and see if that gets rid of the post nasal drip. I just want this thing gone. I never had a problem with sinuses before the swine flu.
  8. cpdwife1519

    cpdwife1519 New Member

    I have the same exact thing /issue I am going to see an ENT !
  9. greatgran

    greatgran Member

    I have the sinus problem also and no answers. I could have written exactly what TigerLilea wrote except for the vitamin C part. So I am going to up my vit. C. I do think this is all a part of CFS, gotta be as I never had it before.

    I also have the test kit from igenex labs I do want another test for lyme but can't find a doc to work with me. I am seeing a new rheumy in a couple weeks..only because the doctor I last saw for my sinuses referred me. I told her I had seen rheumys and no help .I am going to ask him about Lyme so we shall see.

    Good luck, I do hope you find some answers , keep us posted.

    God bless,
  10. TeaBisqit

    TeaBisqit Member

    I think the Clindamycin the doc gave me is helping. I'm feeling better today, but I still have some of the post nasal drip mucus. I haven't tried the nasal spray yet cause I was waiting to see if this was the right antibiotic this time and it seems to be. I'm more alert, I don't feel like I'm about to fall asleep on the floor. I hope this antibiotic clears it up.
  11. Janalynn

    Janalynn New Member

    Hi -
    I've had FM for many years, only diagnosed a few years ago though. I was actually able to manage my symptoms until they got too much for me to bear - hence going after the diagnosis. I don't think it's unusual, unfortunately, to have changes in symptoms nor their severity. Only telling you this so you don't feel so alone or confused as to why something is happening. In my case or many people's, the symptoms do get worse in one way or another (or a new one pops up) - sometimes that's what forces people to head for the diagnosis.

    The sleep issues you're experiencing are unfortunately very common. You're not getting restorative sleep. I go through spurts though and fortunately don't feel that way every night. Headaches also are extremely common to FM, which you probably already know both of those things. I have debilitating headaches (although not migraines). I know how awful they are!!

    You mentioned "headache-like" symptoms being your main problem. Do you mean headaches - or because they are in the sinus area, you're saying "like"?

    Maybe this isn't necessarily related to FM at all. Does even a normal saline nasal spray like Afrin help with the pressure at all, for a short time?

    Is your Dr. offering any advice at all? - referring you to an ENT or something?
    Like I said, this may have nothing to do with FM at all. I'd be pushing your Dr. to help you get to the bottom of this!
    I'm sorry that I don't have more advice for you.

  12. roge

    roge Member

    hi, sinusitis and fm are quite common actually, so your not alone.

    dairy and gluten avoidance and taking epicor has helped my sinus symptoms about 50%. i think avoiding dairy has had the most influence.

  13. TigerLilea

    TigerLilea Active Member

    Hi Roge - I've ordered a few bottles of EpiCor from PH and hopefully will receive them in the next week or two. How did the EpiCor help with your sinus problems? Less infections? No more infections? Shorter duration?
  14. roge

    roge Member


    i have had bad sinus issues for 15 years and tried it all. 2 cat scans were clean. i do have allergic rhintis but also feel i have sinusitis (not sure if infectious or allergic though). i would say both. i have + IGA to Chlymidia P. I also am immunocompromised. I have lymphopenia and a CD4 count of 370 from 2007.

    also, have a VERY low Secretory IGA count based on stool and saliva from Diagnos tech and Siga is critical as first line of defence in mucosal tract. that is why epicor caught my eye as it increases Siga amongt other benfits. there is also a recent study that showed epicor helped with rhintis too. so the epicor could be boosting my Siga and reducing infections. hard to know as i stopped gluten and dairy around same time as started epicor (8 mths ago). i do believe it is the new diet (causing less congestion) and the epicor that has helped my sinusitis by at least 50%. I am sneezing way less too, so i think avoiding key foods has helped.

    I know dairy is a factor as many times I have reintroduced it and like 5 minutes after I get sharp pains in my sinus and I sneez too like 1 hr later. less sure of gluten. would say many with fm or me/cfs have many food intolerances, this must be addressed.

    while im happy my sinus and even fatigue is better, unfortunately my muscle/tendon pain is worse. changed shoes 1 year ago and still have plantar facitis (can't walk more than 100 yards) and now severely strained my hand/finger tendons on trying to open a stubborn jar and oh my unbelievable all we do with our index finger and thumb - quite scary really. oh the joy of Fibro, just when you get control of one area/symtpom, something else happens, sooooo frustrating.

    anyway, hope the epicor helps you.


  15. roge

    roge Member

    sorry, forgot to answer your question

    sneezing, sinus pressure (aweful), sinus pain (headache type as well as sharp stabbing pains) are what have improved the most.

    [This Message was Edited on 01/31/2010]
  16. TigerLilea

    TigerLilea Active Member

    Thanks for your reply. I'll let everyone know how I do on the EpiCor after I've been taking it for a while.
  17. SusanEU

    SusanEU New Member

    I have experienced a lot of sinus trouble and it is always worse in the winter. I have had a lot of pain lately in my eye sockets too as you describe. I had an acupunture treatment last week, but haven't been back for a follow up, it seemed to feel good after (but maybe it felt good getting the needles out!) With my anxiety issues, I'm just proud of myself for having done it. So, I really don't have any answers, just empathy.

    Sue in Ontario
  18. casch

    casch New Member

    I've had such horrible sinus problems~I would choke and gag on the mucous. Actually had to call 911 on myself because the mucous wouldn't come up or go down, I just choked and couldn't breathe. Anyway, I recently had sinus surgery as the dr. AND I ~~felt my sinus infections started with allergies, went to the sinus infections which then went to my lungs and Bronchitis or pneumonia resulting. I had a deviated septum and he thought AND so did I ~ that it would fix my twice annual respiratory death drill. It didn't. As a matter of fact, the dr. accidentally poked a hole in my sinus and I had bleeding behind my eye, which caused scar tissue and now I have double vision. Oh yes, I still have the horrendous sinus headaches, mega sinus drainage but I'm not choking and gagging on the mucous.

    I use a neti pot twice a day, it helps, but is not a cure.

    You are not alone.
  19. greatgran

    greatgran Member

    I have and still experience the above symptoms you are speaking of. In fact for me the sinus symptoms are worse than the fm. Been to many doctors no answers until last week. I stopped by and the ENTafter leaving the rheumy and he worked me in. He told me I had a sinus infection and needed an antibiotic. ( Chronic sinusitis). I told him I did not have the typical sinus symptoms but he explained to me you didn't have to and the sinuses could make one feel terrible.

    Well, I have been on antibiotics before but never finished them so going to do my best to finish them this go round.

    Not sure if its Fm related but the doc feels if I ever get rid of the infection then up my vit. c and grapeseed extract may keep them healthy and I will feel so much better. Also he may want to do food allergy testing.

    Oh, all the other doctors I went to said I didn't have an infection because all my x-rays were clear but the ENT did the light up my nose etc. and said sinus infection.. We shall see.

    God Bless,
  20. greatgran

    greatgran Member

    Is what the ENT gave me . I am hoping this will be one antibiotic I can take. I am taking 150 mg three times a day. All antibiotics are scary if you read about them which I do .. Biaxin was the worst one for me as far as reactions go.

    God Bless,