1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Fable known as The PACE Trial
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Discuss the article on the Forums.

Did NSAIDS start this....

Discussion in 'General ME/CFS Discussion' started by Chronicdave, Nov 7, 2013.

  1. Chronicdave

    Chronicdave

    Messages:
    4
    Likes:
    4
    So hears my story. I first noticed a tightness in my chest. Went to docs got xray and bloodwork, everything looked normal. He prescribed me Naproxen for 12 weeks as he thought it was just chest inflammation.

    After about 11 days of Naproxen i noticed a bloating in my stomach - lasted about 3 months - very uncomfortable. In the midst of this bloating, i developed the fatigue - noticeably in my legs - also dizziness upon standing. I initially thought it was an ulcer or something, but after an Upper GI endoscopy came back negative, i wasn't sure what the problem was - gastritis? Well gastritis i actually still suffer with today 3 years on - although it comes and goes, and nowhere near as bad as that first few months.

    I was chatting with Dr Chia and he suggested that the NSAIDS could have actually allowed a relatively minor initial infection (probably of Coxsackie B - i tested + in stomach biop and bloodwork - typ 3 and 4) to establish itself.

    So i think this actually raises a great point if true about use of NSAIDs - even high dose ibuprofen - which i've seen people pop left right and center when people feel bad. Alot of people don't appreicate the difference between a straight up pain reliever like acetomenophen and a anti inflammatory like ibuprofen. Acetomephen is harmless and will just act on neurons to block pain, whereas ibuprofen supresses immune function. When you pick up a bug, the worst thing you can do is supress your immune response. If you have an autoimmune reaction then thats a different story and immuno suppression is often the best form of attack.

    I'm interested to know if anyone else has a story like mine?

    I'm 3 years in and have made relative improvement over the past few years. I go to work everyday, and can exercise and live a pretty normal life. I just ache alot, and feel tired - even though i'm probably not. Most of the time if i'm kept busy i feel better, but when i'm just sitting around i feel the malaise more.

    I also have two curious symptoms which im not sure if i've seen many people report. The first is what i can only describe as stingy eyes, i'm not sure if its eye dryness as it doesn't seem to get better with eye drops. This might be sinus related as i also have this, as well as post nasal drip - feeling of being difficult to breathe.

    the other symptom - and this is really where my muscle ache is - is my calf muscles. I don;t really ache too much anywhere else apart from around the neck area. It also seems like anytime i exert a muscle i'm not used to using much, that muscle aches for about a week.

    Well let me know if you can relate to any of the above.

    Dave
    merylg likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,151
    Likes:
    4,741
    Albuquerque
    Hi @Chronicdave ,

    This is a good question! Some NSAIDS like Celebrex have anti-viral properties too, so it can get complicated. :confused:

    I can't comment on your main question but just did want to add a caution about acetaminophen, as it can cause liver failure with even a slight overdose and sometimes without an overdose if you have other strains on the liver. It is also a drug to take very cautiously.

    Best wishes,
    Sushi
    merylg likes this.
  3. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

    Messages:
    917
    Likes:
    505
    Murcia, Spain
  4. Chronicdave

    Chronicdave

    Messages:
    4
    Likes:
    4
    Sukhi - let's just stick to standard NSAIDs like naproxen, ibuprofen and prednisone - can't speak for the others. As for acetaminophen it's pretty harmless at low doses that your typical person would take for flu like illness - and I'm not talking about long term use. My point was that too many people I know immediately take ibuprofen when they feel bad when in my opinion they should be taking acetaminophen instead until they know what's the problem

    As to beyond's message, I tested positve for cosackie for my stomach biopsy, and had 320 for my titters against cosackie b type 4, and 80 for type 3.

    The papers you sent say that NSAIDs can cause stomach distress, but that is well known and they are also implied with ulcers also, but my upper endoscopy didn't show anything so the doc said it was prob just gastritis - but my point is that the gastritis maybe wasn't caused directly by the NSAID rather the NSAID suppressed the immune system to the point that the coxsackie was able to establish itself in my gut and cause gastritis. At least this is what Dr Chia was alluding to when I met with him.
    merylg likes this.
  5. beaverfury

    beaverfury beaverfury

    Messages:
    422
    Likes:
    424
    West Australia

    I was taking a ton of ibuprofen for a dental problem the week i got sick with my onset virus.
    I imagine the ibuprofen wiped out the mucus lining of my gut as well as lowering cellular glutathione. Not a good combination.

    I had been taking ibuprofen too often in the preceding years for neck ache which in retrospect may have been related to lyme disease.

    There's so many threads to this illness that it would be hard to spotlight NSAIDs as a causative factor.

    If neuroinflammation turns out to be a factor in me/cfs then nurofen may help dampen down microglial activity early in onset, which may be a benefit.

    We are all waiting for the ME/CFS Messiah, whose brain will be as big as a planet, to crack this mystery wide open.
    In the meantime sniffing around ncbi pubmed is instructive, if not worrying.
    For instance http://www.ncbi.nlm.nih.gov/pubmed/23726390

    I still take the odd nurofen for neck and headaches. I find if i pop one early in detecting one of my 'episodes' i can avoid a day of debilitating pain and headfog.
    merylg and Beyond like this.
  6. Chronicdave

    Chronicdave

    Messages:
    4
    Likes:
    4
    Here's another question. Do you think the head fog is caused by sinus infection by the coxsackie virus. I had a CT of my sinuses recently and they showed inflammation. I'm pretty sure it's not allergy as loratidije does nothing to me and antibiotics do not seem to make me any better - so I'm starting to think its viral chronic sinitus. Dr chia told me that coxsackie can infect most tissues - sinuses includes. In my case he thinks it's in my stomach (gastritis) and sinuses (sinusitis) and muscles (calf muscle aches) - these are the three areas that give me most issues.

    I'm wondering if you've ever monitored relative humidity levels during the day to see if they correlate with when you have brain off days and better days. It could be that days of high (>70%) or low (<20%) is what triggers the brain fog - I.e bad sinus congestion
    merylg likes this.
  7. Chronicdave

    Chronicdave

    Messages:
    4
    Likes:
    4
    Unfortunately ibuprofen and acetaminophen do nothing for me. But I guess we're not all suffering from exactly the same symptoms - and there are probably diff viruses/causes behind what we lump together as CFS. At least my title correlation and stomach biopsy results for cocksackie give me some encouragement as to what I may have. I recently took some prednisone for 3 days and I had a real bad crash. So at least for me it seems that NSAIDS just allow my virus to run riot. I am thinking of taking equilibrant soon.
    merylg likes this.
  8. beaverfury

    beaverfury beaverfury

    Messages:
    422
    Likes:
    424
    West Australia
    I don't think my headfog is caused by sinus problems, although they are mostly blocked, and have been all my life as i have suffered from allergies before getting ill.

    Nowadays i think the worst of it is set off by neck stiffness ( maybe due to lyme.) It seems to be a form of mild migraine which i get at least once a week. Even before getting ill though, i would get days of blank headedness which kind of resembles innattentive ADHD. I don't know if it is all linked up.
    It seems everyone with me/cfs gets some sort of headfog. Our neurotransmitters are not very co-operative.

    As to the humidity, i haven't noticed any patterns. I should be diarising and trying to find patterns.
    merylg likes this.

See more popular forum discussions.

Share This Page