CFS symptoms after 3 years off

[[le...]]

Hi Hardy, hope you read this, they’ve blocked me sending PM. Seem to remember you had chronic fatigue syndrome, could you message me the symptoms. We both had several bouts of Gastro enteritis, now both feel exhausted all the time, after doing something for half hour have to sit down. Husband also has joint pain. Just wondered if it’s now chronic fatigue syndrome. All bloods and stool tests clear. Sorry to do this on public forum but haven’t got any other way contacting you😄

[[pi...]]

I hope that you get a response from Hardy. This subject should be discussed on the forum anyway, the PM system is just for friendly chit chat and support.

[[le...]]

You may as well delete this she hasn’t replied, which is her prerogative, don’t have any issue with, I wasn’t after withdrawal advice, just asking about CFS symptoms, as really don’t think this is withdrawal as my husband feeling exactly the same. Been 3 years since stopped AD’s never felt like this before.

 

 

[[Co...]]

Leann, you havent even left it on a day for the peraon to answer you . Lots of people get CFS like synptoms when it is withdrawal actually.

[[Ma...]]

I’ve been googling chronic fatigue syndrome all day. I can’t get out of bed. Just.Exhausted mentally and physically and in a ton of pain.

[[Ha...]]

Hi Leann.

I’ve been to Bristol for the weekend so didn’t see your post.

Yes, I was diagnosed with CFS but I do not have it, it was the drugs for sure.

I was taking Lorazepam and Codeine at quite high doses and both are respiratory depressants. No one told me this was bad news. Then of course I developed sleep apnoea…….I wonder why!

Came off the drugs, sleep apnoea much reduced and energy restored, well mostly. I have got older in the process so I would say I have average energy for my age. I’m hoping to get even better as time goes on.

I’m sorry you’ve been feeling so bad. Really sorry.

Hardy x

[[ma...]]

Chronic Fatigue symptoms have been reported in withdrawal.  I was bedridden,  exhausted most of the time.  My eyes would close while in the middle of conversations, very embarrassing,  simple tasks would leave me breathless.  I couldn't stand up for more than a few minutes.  This does get better and eventually will go away.

 

Here are a few threads I found, there are others.

Chronic Fatigue

Chronic Fatigue Syndrome

Try entering the following in the Google search, it brings up more than the forum search.

Chronic Fatigue Site:BenzoBuddies.org

 

Magrita

 

[[Mo...]]

You want to google ME/CFS or Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.  Symptoms are many and varied.  You will find descriptions on sites like Open Medicine Foundation, Solve ME, ME Action, ME Advocacy.  There are many UK (ME Action UK, Invest in ME), Australian (Emerge Australia) & many other international orgs & coalition orgs with lots of info on ME.

 

You will find that 'chronic fatigue' (cf) is not the same as ME/CFS (ME was inappropriately renamed "CFS" here in the US a few decades ago for political reasons. Most patients prefer to simply call it ME nowadays...)  Benzo survivors will often have cf, but not always end up with ME.  Some probably will end up with ME, but there is no research to back up that assumption. (I know - very confusing, takes time to learn.)

 

ME onset is usually post-viral (roughly 10% of Long Covid sufferers go on to fit the case definition of ME/CFS), but can occur after physical trauma or chemical exposure.  (You could call benzo w/d physical trauma, and simply taking benzos chemical exposure.)

 

Hallmark symptom is post-exertional malaise (PEM), exertion for some folks being anything from brushing your teeth to a short conversation, while some patients can still work but do nothing else.  The flu-like, hangover-like malaise may be immediately apparent but is most often delayed by a day or two and can last days, weeks or months.

 

I had ME for 10 years before ever taking klonopin.  (I was a US advocate until klonopin finally got the best of me.) I knew my symptoms and what provoked PEM very well.  I tapered fairly fast (regrettably, in hindsight) to be able to tell whether I was having PEM due to ME or benzo w/d symptoms.  ME is nasty, but adding benzo w/d is a whole 'nuther experience!  I thought having ME for 20 years prepared me for the expected benzo w/d marathon, but I underestimated the intensity & relentlessness that benzo damage caused, at least for me.  It has ultimately caused my baseline functionality with ME to plummet after 5 years of protracted w/d.

 

So, for me at least, w/d & protracted w/d worsened my ME, as would be expected, given the list of physical stressors that can worsen ME.

 

For many others that report here though, if they didn't have ME/CFS before, they often recover from their cf, some more quickly than others.  Here's hoping you're one of the quick ones!  Good luck!