Great relief from daily baby aspirin....then it stopped

[Cynthia Robins]

Hi, Everyone -
I'm pretty new to the Forum - been reading posts for a couple of weeks now, and can't say "thank you" enough for having a place to go where I feel validated. Been living with CFS for six and a half years now and although my symptoms are generally better than they were, say, two years ago, I am still running at about half-speed. I used to be a competitive cyclist but have been unable to do anything (even take short walks) for six years. About eight months ago, due to a change in living circumstances, I decided I'd try to get back out on the bike, even if for only a few miles, on those days when I had the energy. Six months into it, each ride was as awful as the first day I'd gone out....I've learned to back off the pace enough so that at least I can function the next day, but there's absolutely nothing pleasant about the experience.

Have tried all manner of supplements, vitamins, diets, etc. to no effect. Then about two months ago, I saw an article in the New York Times that extolled the general health virtues of taking one baby aspirin (82 mg) a day - significantly lower rates of cancer, in addition to the expected lower rates of cardiac issues, stroke, etc. So I started taking one, simply as a preventive for those things. Then, about three weeks in, I noticed that my primary CFS symptom - extreme muscle fatigue (feels just like the mitochondria have shut down) - had abated. I was out riding and found that I'd ridden up a hill that, three weeks prior, had left me literally draped across the handlebars until I could get moving again. After a week of that experience, I realized something was going on. My health wasn't great, but it was a darned sight better than it had been in years - I was so excited and hopeful! Started reading up more on pro-inflammatory cytokines, since certainly the aspirin could be having an effect on the inflammation.

Then, last week, the effect just stopped. I mean, stopped cold. The fatigue is back and it's just as bad as before, the bike rides are excruciating, and each ride has gotten slower than the last one. Two things happened right around that time that may be the culprits: I hurt my neck and after two days went to a chiropractor to get it set right - I'm wondering if I set up a new inflammatory process there; and then I noticed that i had a swollen lymph node in the back of my head again, and am wondering if the virus (I was Dx'd with a new EBV infection when I got sick 6 years ago) has been reactivated.

Anyway, this is partly by way of venting my frusrartion, but I'm also wondering a couple of things: For those of you who had a treatment work, then stop, do you have any ideas what might have triggered the relapse of symptoms? Also, were you ever able to get relief from that treatment approach again? Secondly, has anyone here had relief from a tiny, chewable aspririn? I know aspirin has all kinds of amazing qualities, but I was happily stunned by the effects for those few weeks. Thanks for any input or insights you all might have.

 

[Merry]

Hello, Cynthia Robins. Nice to meet you. I'm sorry to hear that, after significant improvement, you suddenly felt worse again. Many people with ME/CFS (and certainly other chronic illness) have experienced this -- an absence of symptoms for awhile and then, inexplicably, their return. Because of this, figuring out which medicines or supplements work is difficult.

I, too, tried daily aspirin (after reading all the news reports recommending it) but had to give it up because of bruising. I also gave up fish oil for the same reason. I believe PR member Sherlock was the one who recommended turmeric capsules (with black pepper), which I found at iherb.com. Anti-inflammatory properties -- an antihistamine also -- but it is very much more expensive than aspirin. Although it does relieve the pain in one thumb joint (which is much more recent than the onset of ME/CFS and is, I think, arthritis), I can't say for sure what effect it has on ME/CFS. Less muscle soreness?

Not very helpful, I know. Good luck.

 

[taniaaust1]

Welcome to the board

Then, last week, the effect just stopped. I mean, stopped cold. The fatigue is back and it's just as bad as before, the bike rides are excruciating, and each ride has gotten slower than the last one.

I strongly suggest to take a week off.. yes you could have something reactivating and if you have, pushing yourself while that is going on could end up making your condition permanently worst.

Why things go and reactivate on us.. who knows? This is a tricky illness with so many different things coming into play.

Seeing asprin did work so well for you a for a few weeks.. you may want to pay more thought into possible whys of this? Yes it could be cause it helped inflammation but also many of us thou (I'd think at least 20% of us probably more) also have MTHFR polymorphism and asprin can help some with that some (as it can cause some blood coagulation). You could ask your doctor to be tested for this polymorphism as labs commonly do testing for it.

A lesser known thing is Hughes Syndrome and ME/CFS info which a study once done by a specialist blood lab showed we nearly all have (It may of been as high as 90%??). Hughes syndrome causes "sticky blood" and things like baby asprin have been used in that. It has been said that in ME/CFS this sticky blood helps protect biofilms?? which protect microbes?? and prevents body from getting rid of them. So maybe by the asprin.. those things were exposed for your body to start attacking them to help remove them???

Anyway... I suggest you research yourself into Hughes Syndrome and ME/CFS as I dont think Im doing a good job explaining and may be confusing my words.

best luck

 

[Sushi]

Cynthia Robins

I think a number of us here used to cycle a lot. What I discovered (the hard way) was that riding to the point of pushing and then getting symptoms later (PEM) was affecting my immune system. I don't know if this might be happening to you, but it is worth considering. Now if I ride at all it is within strict heart rate limits (below my anaerobic threshold).

Welcome to the forum!
Sushi

 

[*GG*]

Welcome to the Forum! How are your Vitamin D levels? It''s a immune modulator, and you might want to try boosting that up. Also, you might want to explore LDN (low dose Naltrexone), it's also supposed to modulate the immune system, I have been on both for the last 3 years, after a major crash, and just keep getting better. I also do a few other things, I found a good Dr on http://www.co-cure.org/USA_PA.htm this link is specifically for your state.

GG

 

[alex3619]

I am out of date on aspirin chemistry, but while the traditional mechanism is as a suicide inhibitor of the enzyme cyclooxygenase, there was a report a few years back that it actually improves blood circulation via a second mechanism - there is an eicosanoid it actually enhances if I recall correctly, something like PGI2 maybe, but I don't recall for sure.

I too have tried things that worked well for a short while then stopped. We are messing with peripheral biochemistry, not the root cause.

 

[Marco]

Some thoughts Cynthia - and welcome

A large scale study found a correlation between prior vigorous exercise and the risk of developing ME/CFS and I'm pretty sure (can't find the reference now) I read somewhere that elite cyclists are at a higher risk of developing ME/CFs even many years after ceasing competitive training.

Heat shock proteins are induced by all forms of physiological and psychological stress (including exercise naturally) and play a crucial role in preventing cellular damage due to oxidative stress.

Two groups of researchers have found an attenuated production of heat shock proteins and elevated oxidative stress in response to exercise in ME/CFS patients.

Aspirin can enhance the production of heat shock proteins in response to stressors.

I've a theory that we carry an enhanced risk of developing a vicious cycle of neuroinflammation involving a neurotransmitter imbalance, oxidative stress and mitochondrial dysfunction and are prone to exceeding our capacity to respond to various stressors.

My guess is that aspirin enhanced the production of heat shock proteins which increased your exercise tolerance but that you may have overdone it and exceeded your current capacities to control oxidative stress and tipped back into the neuroinflammatory state. A reactivated virus would obviously have increased the oxidative stress burden over and above the increased activity.

Just conjecture.

PS - I also find certain things work for a while (and not a placebo effect as I'm well past expecting things to improve) but then the beneficial effects stop. Perhaps again I'm overdoing things when I feel an improvement.

 

[Cynthia Robins]

Wow, thanks, everyone for your thoughtful responses. I may well have overdone it - easy to do when you have a period of feeling like your old self. Felt like I had control of my body again. Sushi, you're spot-on with staying below the AT - the interesting thing is that when I'm symptomatic, seems like I hardly do anything and hit the threshold (maybe not numerically, but definitely physically). With the symptom remission, I found I could play around at the AT without suffering the same PEM. Boy, was it fun while it lasted! Alas....:thumbdown:

I'll check into some of the things you all have mentioned, particularly Hughes Syndrome and the LDN. Did some reading on inosine yesterday (thinking that maybe it's the EBV), but was alarmed by some folks' symptoms. Also seeing a new doc today, so am hoping to get some bloodwork done to recheck levels of EBV and various and sundry cytokines. Lots to consider and explore.