Chronic fatigue syndrome and klonopin

I don't know about it causing it, probably does mimic it.  I was diagnosed many many years ago with CFS and Fibromyalgia and it was severe and I was bedridden and in a wheelchair  for many years until I started to see improvement and a form of remission.  Then came benzos.  I am in tolerance wd right now and I have felt it triggered it to resurface, but maybe it has mimicked  the symptoms, though I have been bedridden for 7 months now since I went into tolerance and wd.  It is hell.  I am starting taper tomorrow and dreading it, if this is how I feel without even tapering. I made a slight adjustment in the time I take my ativan and I am feeling it. Any slight adjustment and I pay pay pay. But if I wait til I am a little more stable, I may and wait.  I have already had a long string of things beyond my control that have made all this worse including  doc changing meds and  dosing  me down way too much, which I am still paying for after many months.  I am tired of waiting any more to taper.  Ok just had a couple days of sheer hell and getting some griping off my chest. its just so frustrating to be so sick and not even tapering yet, or I could at least say its another day closer to healing, I think that is what makes it so hard. 

Stevie,

 

are you going to taper from klonopin or are you ever going to any kind of cross over to valium? i am definitely not one who knows how to taper rightly after doing so many c/t's. but i did make the cross over to valium successfully. i just couldn't proceed.

if i had to taper again--i would cross over to valium because i personally think klonopin is so much stronger. (for me it was)

and do some kind of liquid titration suspended in milk. that way when you crush the benzo and put it in a liquid you get most of it rather than dry cutting where you get a lot of the filler parts and not so much the benzo and can go into worse w/d's.

Good Luck and hope that other's chime in for you!

pretty

 

Lunaticus,

 

all throughout tolerance w/d and for the first 9 months after the c/t i dreamt of dogs and wolves biting me or trying to bite me or vicious cats clawing me--and i know that was the state of my nervous system. but thanks for the dream interpretation about a sign of insanity. yes, me and my family have been through one trauma after another this last year and i don't know how we didn't shoot one another. things are finally calming down a little? i'm glad the demon's are behind me and that the little puppy is a good sign. it felt good. and this other lucid dream i had about Elton John singing "Someone Saved My Life Tonight" and he started the song in a hospital bed and then it turned into me and then i got out of the hospital bed and into a convertible car with a bunch of friends and they were all singing the back up parts to that song while we were driving, it felt so good and was so freeing.

 

oh it was so good and so lucid and i woke up in a magnificent window until my crazy family came home and i was subjected to all the yelling once more. immdiately left that nice open window to gear up for the stress of yelling. i don't know how i can heal here?

 

my dreams too are fragmented and i don't really remember. is that a sign of healing?

 

thanks, pretty

 

Billie,

 

i am so sorry you are in hell with your tolerance w/d and haven't even started your taper yet. i know what that is like. and i sure know what it is like to be bed-ridden for so long. i am at 11 months and i am still bed-ridden during the day. i just can't get up at all. i was bed-ridden all through my tolerance w/d too!

 

even though i did feel like i finally turned that little corner about 6 days ago i have a long way to go and a little behind than most peeps on here. i know how frustrating it is to feel so sick and not even tapering yet. i went through that for a little over ten years but i didn't know i was in tolerance w/d and i didn't know anything about this forum or The Ashton Manual.

 

i wish you the best and strength to get through this! you will be able to get through this--just stay afloat and good luck on starting your taper!

 

pretty

Like I said, some people who get diagnosed with CFS or fibro are genuinely ill, others are not, or if they are, it is not CFS but something else. What is CFS anyway ? Nobody knows for sure. All I know is that benzos caused me to become exhausted and have all kinds of fibromyalgic pains. Before that, my only symptoms were insomnia due to stress and bad sleep hygiene, and also palpitations that stayed with me all through my time on benzos but they went away completely since coming off.

 

By the way, CFS is a syndrome, not a disease as such. For it to be a disease, it would have to have a clear cause and measurable abnormalities or damage to the body. That's why I think many of us in benzo withdrawal would classify as having CFS because after all we are chronically fatigued, and often more so than those who get diagnosed with CFS.

Cfs And fatigue caused by benzodiazepines are two very very different things. It is very common for people in tolerance withdrawal while on benzodiazepines to think they have chronic fatigue syndrome and also the medical professionals will diagnose people and have falsely diagnosed many many people who are in benzodiazepine tolerance withdrawal. If you did not have chronic fatigue before benzodiazepines I believe after your taper and after your healing this will all go away.

 

They really should change the name of CFS because this disease is very debilitating and very misunderstood because of its name. Candy

Cfs And fatigue caused by benzodiazepines are two very very different things. It is very common for people in tolerance withdrawal while on benzodiazepines to think they have chronic fatigue syndrome and also the medical professionals will diagnose people and have falsely diagnosed many many people who are in benzodiazepine tolerance withdrawal. If you did not have chronic fatigue before benzodiazepines I believe after your taper and after your healing this will all go away.

 

They really should change the name of CFS because this disease is very debilitating and very misunderstood because of its name. Candy

 

I agree Candy. CFS fatigue is very much different from benzo fatigue. CFS fatigue is an exhaustion of both mental and physical, you feel like you are literally dying, that life is being sucked out of you. Way different from benzo fatigue.

 

RG

I'm sure I've had episodes like that during my benzo withdrawal when I felt like I was dying. No strength whatsoever and mental exhaustion beyond belief. I've had severe POTS when standing up caused me to have a fall in blood pressure and high heart rate. Many with CFS don't even get that. Often you hear that the symptoms in CFS patients only manifest themselves after exertion. Many people with CFS feel perfectly fine as long as they are not (over)doing anything. Not so in benzo withdrawal. We can feel like crap without doing anyting at all. My two friends who both have CFS and fibro (both officially diagnosed) are not half as sick as I have been because of my benzo withdrawal. They have never been bedridden, the can go out at night and go on holidays.

 

I'm not sure if the difference between the symptoms of CFS and benzo withdrawal are so different. Some say it's an entirely different illness, but that still doesn't answer the question what CFS is exactly, and the fact that so many people in benzo withdrawal are being diagnosed as having CFS proves not only that withdrawal and "real" CFS can present as exactly the same illness but also that the definition of CFS is unclear. Examine 10 people with a CFS diagnosis and all 10 of them have different symptoms and a different profile. Even within the same symptoms there's a very large variety between patients. Take sleep for instance. Many with CFS can sleep 24/7 but others have hardly any sleep at all and still they have the same illness. It doesn't make a lot of sense to me.

 

That's why CFS is a syndrome and not just one disease that is the same for everyone who has it. The symptoms caused by benzo withdrawal perfectly fit the current CFS and fibromylagia criteria.

I started on klonopin around 1998 and had my first bit of fatigue in 2005, a more significant bout of fatigue at the end of 2007, and chronic fatigue starting in September of 2009.  Is there any evidence that klonopin can lead to chronic fatigue syndrome?

 

I am almost done.  I strongly believe this is a misdiagnosis.  I was told it was CF or FM after being on the same drug (Clonazepam).  It mimics the symptoms.  I am feeling better each week now down low.  The constant tension followed by muscles relaxing is what I believe is the cause.  They like to use these terms for unexplained pain, muscle aches. The percentage is up to 6% and mostly Women.  Avg is about 3%.  Thisbe has done  research on this and look at her diagnosis.  It was Lyme and this is missed so many times.  Also, the easiest is Hypothyroid and this can occur with the long term use of Benzos.  So it is all connected.  I am certain. 

 

I think it is a "catch all" syndrome.  Then we are poly drugged and don't know which way is up.  Some have it yes, but the odds are low. What is plausible is long term stress and lack of stage 3 sleep contribute as does other anxiety or trauma. I am out to prove this diagnosis wrong.  I will respond when I am off, but I am feeling much better even after the brutal months that have passed. The FM symptoms, CFS are really not an issue anymore. 

 

I have strong opinions on this as you can see.  Get a label and you want to believe.  Drug side effects and Thyroid are the two most likely culprits.

 

I did a lot of research and when all else failed, I woke up and took matters into my own hands.  We must control our minds and body and what we put into them.  I went the diet route and elimination.  Even the gluten thing. Spent thousands at spas. All I can say is eat well, reduce your red meat at this time as it is hard to digest. Eat raw veggies, Juicing and magnesium seems to work for many here.

 

T'care

 

Agree!

I agree Candy. CFS fatigue is very much different from benzo fatigue. CFS fatigue is an exhaustion of both mental and physical, you feel like you are literally dying, that life is being sucked out of you. Way different from benzo fatigue.

 

 

Funny, but thats pretty much how I feel, and I dont have cfs...just benzo wd.  Isnt this a problem of definitions?

Many years ago while on a benzo, I was diagnosed as having Fibro. I honestly think it was, in reality, tolerance withdrawal and no one made the connection.

east

I dont think comparing one experience with another is helpful. Feeling like life is being sucked out of you IS some peoples experience during WD.

 

I think we live in a society obsessed with diagnosis and labels. Which is why people are being ridiculously over medicated.

 

 

Like I said, some people who get diagnosed with CFS or fibro are genuinely ill, others are not, or if they are, it is not CFS but something else. What is CFS anyway ? Nobody knows for sure. All I know is that benzos caused me to become exhausted and have all kinds of fibromyalgic pains. Before that, my only symptoms were insomnia due to stress and bad sleep hygiene, and also palpitations that stayed with me all through my time on benzos but they went away completely since coming off.

 

By the way, CFS is a syndrome, not a disease as such. For it to be a disease, it would have to have a clear cause and measurable abnormalities or damage to the body. That's why I think many of us in benzo withdrawal would classify as having CFS because after all we are chronically fatigued, and often more so than those who get diagnosed with CFS.

 

I feel the same way.  Has this feeling improved for you since you've been off LC?  Do you think you're getting better yet?

Hi Tina,

 

I've been off for 19 months now and unfortunately, the past 9 months or so have not been so good. Poor sleep, fatigue, lots of headaches, inner ear pressure, soar muscles and burning pains. Previous to that, I did have about 4 months where the symptoms were present but more manageable. I try to remain hopeful, though.

 

There's no reason to call CFS worse than benzo withdrawal. I really have trouble believing that. At my worst during this ordeal I was close to dying or at least I felt like I was, and I had virtually no sleep for months on end, plus dozens of other symptoms. I was completely bedridden. I have seen plenty of people with CFS and fibro who are perfectly able to hold a job and have plenty of after-work activities. They are not really ill until they overdo it, and that "overdoing" seems to be different for everyone since I've known a person with CFS who only gets the symptoms "after a few years of doing too much" and then only needs to take it easy for a couple of months, during which this person is only slightly more fatigued than usual. She was officially diagnosed with CFS, and so are many, many others with similar stories.

 

All I'm saying is nowadays one can be diagnosed with CFS and fibromyalgia as easily as children are being diagnosed with ADHD and autism, or adults with bipolar disorder. There are no real physical tests that can measure fatigue or pain, and thus all depends on how willing your doctor is to believe you and hand out diagnoses.

LC-I agree with you. The fatigue i have experienced from this is something i have never experienced before in my life-pales in comparison to pregnancy fatigue, etc. It has also kept me bedridden or feeling close to death at times. I am not exaggerating. I was 100% healthy before this. I truly hope you see some relief between now and the 24 month mark. It just takes longer for some to get there. I know we will all be back to normal some day!!

 

Tina

Fatigue has been my worst most disabling symptom and at times had made me feel like I was going to die. There have been times where I have had bouts if sudden muscle weakness so severe I could not do anything but lay on the floor unable to move. I have also experianced night sweats, low grade fevers and chronnic sore throat. All symptoms of CFS and none of which I had before coming off Ativan. I have had blood tests, scans, even a bone marrow biopsy and nothing comes back abnormal. At eight months off of a three month useof this drug I am only now beginning to function more normally. I still struggle every day though. I don't know how this "medicine" could have done this to me but there is absolutely no other explanation.

Hi Wesly--

 

Good to hear from you   It looks like you are beginning to see some healing.  I know how hard this has been for you.  I totally get it.

 

Hugs,

Tina

Hey Tina! I think of you often in your pursuit of ridding this crap fom your life for good. I am doing better but have really hard days still too. Because I also have POTS it has been quite a difficult journey that I am still pushing through. I will tell you as too offer some hope that about a month ago I started to be able to excercise again. Not just my puny walks around the block but walking and even running again. I have to be really careful ( today my hr reached 200bpm after climbing a small hill on my run). But from where I was, laying on the floor sobbing 90% of my day things are looking up and they will for you too. I don't know how long it will be until I can say I am healed but until then I'm still here, fighting and pushing back on this horrendous enjury to my body and mind. We'll get there.

 

Wesly

Wesly!

 

Sooo happy to hear you are able to exercise again!  Yes, that does give me hope--especially since our symptoms are so paralleled.  I think once I am off the crap, I will be able to see major healing--I just have to go so slow or I get completely non-functional and bed-bound.  I have improved since a year ago when dropping the Ativan so quickly majorly messed me up.  I know I have improved, but I am still so far from normal and how I used to be, that I can't really see it.  And I do have really bad days too where I feel like I've made no progress!

 

Anyways, again so glad to hear you can exercise a little.  One day at a time, right? 

 

Tina

LC, Wesly, (and anyone else with the same problem)

I know this is off topic here, but I was wondering about your POTS diagnosis. Did it come before or after benzos? My POTS dx came right after my ativan w/d (less than 1 week after my last pill) and the meds I've been given for it only made me worse ...ironically klonopin was one of them.

There seems to be quite a few of us with dysautonomia dx's on the forum and I can't help but wonder if there is any connection.

 

Thanks

 

Amy

Thanks, Tina. We will all make it and come out stronger than before! I'm not putting any deadlines on my recovery, but 24 months would be nice indeed.

 

If CFS is caused by stress, and benzo withdrawal puts us under incredible stress, then what we have is no different from CFS in my opinion. Ours certainly is not a lesser disease than "plain" CFS. It can't be since the only thing worse than this is death. And let's not forget that a lot of the "plain" CFS cases are in fact misdiagnosed benzo withdrawal. I repeat: there is no one type of CFS. If you have the symptoms, regardless of the cause, then I think you should be able to call it chronic fatigue syndrome following the current criteria for CFS, which does not require any physical proof. In fact, there's more physical proof for damage to the body in us going through withdrawal than for someone who isn't, because the pills did cause havoc in our brains and that's a fact.

 

My POTS was never diagnosed. I just had it and knew it was withdrawal as I never had it before.

My POTS was never diagnosed. I just had it and knew it was withdrawal as I never had it before.

 

Thanks LC, (un)fortunately i got diagnosed. Back then I knew nothing about benzo w/d.

Have your POTS sx improved since you put some distance between benzos and yourself? If you don't mind sharing.

 

Amy

I have symptoms of POTS too.  I once read a checklist and met all the criteria.  I NEVER had these symptoms before Ativan, so I am 100% sure that these sx are a direct result of benzos.  I actually don't want to get officially diagnosed--not with POTS, nor with CFS, Fibromyalgia or anything.  This is because I know I had such a healthy body and brain before all this and am hoping that when this is all said and done, I will be that person again.  That is, unless benzo w/d can trigger a chronic ailment.  OMG--I am really hoping and praying that that is not the case though!

I have symptoms of POTS too.  I once read a checklist and met all the criteria.  I NEVER had these symptoms before Ativan, so I am 100% sure that these sx are a direct result of benzos.  I actually don't want to get officially diagnosed--not with POTS, nor with CFS, Fibromyalgia or anything.  This is because I know I had such a healthy body and brain before all this and am hoping that when this is all said and done, I will be that person again.  That is, unless benzo w/d can trigger a chronic ailment.  OMG--I am really hoping and praying that that is not the case though!

 

Thanks for sharing Tina.

I sure hope this is not going to turn into something chronic. I think the meds made me worse though

 

Let's hope we'll all heal soon.

 

Amy

I really worry about this too - like Ive damaged my nervous system permanently.

Just got to work with it if I have. No way out.

 

Only way out is through...

I am one and a half years Ativan free. I did a rapid taper and I am just as sick as anybody I am still in bed at 18 months. Both of my legs feel like they weigh 100 pounds each my hands are contracted and I have severe muscle tension. I feel like the life is being sucked out of me please do not get me wrong And I also have the symptoms of pots.

All I am trying to say is that fatigue from benzo withdrawal is withdrawal chronic fatigue syndrome is a different thing altogether. In many ways I believe the symptoms in benzo withdrawal Can b way worse than chronic fatigue. The difference being benzo withdrawal goes away but cfs does not.

what is POTS?

 

i am going into my 12th month and still bed-ridden. my brain still swims all around inside my skull. i am having new sxs where my legs feels like lead and so heavy it's difficult to walk. i also feel like i am being pushed down and pulled back. this is new after i made that little turn of that corner. also, i don't feel like going on any longer. i am not suicidal, just exhausted and feel like my life is over because i lost over ten years (again) from benzo's and woke up to an age i don't understand since i can't remember much from being on the klonopin and trying to get well every single day but still only able to lay in my bed--which is a f'king couch that's becoming more and more uncomfortable/

 

what is POTS? i hope i don't have this now as well as MS and i worry about lyme too.