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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I`ve noticed lately that allthough Tramadol is great for many of my symptoms, it affects my vertigo and my visual disturbances negatively. I have had chronic nautical vertigo (like Laura Hillenbrand) and chronic visual snow and "flies" in the visual field since the day I got sick. I also see a "negative" of the thing I`m looking at when I look away. These things all get worse with Tramadol, like a PEM from the drug that starts the day after I`ve taken it. And the worsening seems to linger and not go away. Starting to wonder if this is all in my head, and that I`m just imagening it as I can`t find any reason as to why just these two symptoms are affected negatively.
Good point about the tolerance issue. I haven't taken the meds long enough to make a call on that (well, maybe somewhat). This discussion also got me thinking about symptomatic baseline changes after their use. I said previously that I hadn't noticed any changes in my baseline condition after stopping the meds, which is true, but then I haven't been on them long term.
I'm sure it would be difficult if not impossible to find a doc to prescribe these meds for me/cfs symptoms, even the me/cfs docs. But then most of us have physical pain too. I can get them for arthritis pain. Regardless, I really don't want to be on narcotics long term. Easier said being back at the mild-moderate level of illness. I was willing to do anything when severe.......but really doubt I would have seen this affect then.
I have taken hydrocodone (dilaudid) every 4 hours round the clock for 3 yrs now and I have not built up tolerance or had to increase my dose. After a major surgery I had to up the dose significantly but was able to taper back down easily once the surgery pain had subsided. I was prescribed hydrocodone due to severe brachial plexus nerve damage that causes severe pain in my arms and hands but I do think it also helps with some of my ME/CFS symptoms.
Nope I have not. I don't think I could just stop for a few days. Would have to taper off slowly. But I have no desire as my nerve pain is constant and while the hydrocodone does not cure the pain by any means it reduces it to a mostly tolerable level. I lived in constant pain for 13 years told there was nothing wrong with me. Turns out there was and now because doctors missed it (2 extra ribs compressing my brachial plexus) all those years I am left permanently disabled, unable to drive or work. Major surgery to address the problem only stopped it from getting even worse.Hi, have you ever tried to just stop for 3 days or more?
Ps for me opiates DEFO help with ME/CFS symptoms!
I tried the 24 hour tramadol about 5 years ago when I was in pain management.@flybro If you take this many (which I do too every day now), have you considered changing to the longer acting ones with a little higher dose each (they come in 100 mg, 150 mg and 200 mg)? This is what I'll ask my doctor about next appointment, I've spoken with a couple of people who say they can take less with the longer acting ones and take them every day. I need something more consistant now, and as @SueJohnPat points out, anything is really justified in this situation with extreme pain.
@SueJohnPat Does the exact opposite for me. Makes me much more sleepy and I sleep longer and fall asleep as soon as my head hits the pillow. But in the beginning of taking Tramadol I experienced what you describe there, problems falling asleep, waking up many times and so on. But this was a side effect that went away after a while for me. Still not taking it 24/7 though. I've found a good regime with taking it every other day ex. 2-3 times a we
@SueJohnPat Does the exact opposite for me. Makes me much more sleepy and I sleep longer and fall asleep as soon as my head hits the pillow. But in the beginning of taking Tramadol I experienced what you describe there, problems falling asleep, waking up many times and so on. But this was a side effect that went away after a while for me. Still