Chronic fatigue syndrome and klonopin

[[st...]]

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?  Has anyone with cfs been on klonopin and had significant improvement after tapering off?  About the only thing I can find on the net is klonopin as a treatment for cfs!

 

Also, I think it said in the Ashton Manual that you only start feeling better once you are off of the benzos completely.  Has that been most people's experience or can you start feeling better while still tapering?

[[Th...]]

Have you looked on the Phoenix Rising forum?  There was quite lively discussion on there - either in a thread or under an article about these types of drugs.  I'm sure I remember that for some people ceasing benzos made a drastic difference to their health.  Unfortunately not for everyone.  As you started the Klonopin before the CFS emerged hopefully getting off the drug will show you whether or not that was part of the cause of symptoms for you.

[[dm...]]

I have felt some improvement while tapering...but its been 19 days since my last cut.

[[pr...]]

even though i am still bed-ridden during the day and pretty bad at 11 months out. i felt an immediate difference in how the fatigue or chronic fatigue feels from being off the benzo's then when i tried to taper. i won't know if i still have 'chronic fatigue' or any other immune system disorder until i am totally healed from benzo withdrawal. but i felt a definite difference.

[[dm...]]

extreme cfs today

[[pr...]]

are you thinking about doing any kind of dietary changes for instance something like the GAPS diet to help with the chronic fatigue? i always feel better when i am eating the right foods and no allergy type foods.

[[st...]]

Funny you mentioned it, but I am starting dairy free today.  I'll have to look into GAPS diet.  I haven't heard of that one before.

[[st...]]

extreme cfs today

Sorry to hear it.  That's how it goes with cfs.  It is a real roller coaster ride.  You can feel bad for seemingly no reason at all.  It is hard to plan anything in your life with any degree of certainty sometimes.  I hope you feel better soon.  It can be a living hell.

[[st...]]

Have you looked on the Phoenix Rising forum?  There was quite lively discussion on there - either in a thread or under an article about these types of drugs.  I'm sure I remember that for some people ceasing benzos made a drastic difference to their health.  Unfortunately not for everyone.  As you started the Klonopin before the CFS emerged hopefully getting off the drug will show you whether or not that was part of the cause of symptoms for you.

I'm a member of PR too.  I typed in klonopin in the search engine, and tons of stuff came up.  I didn't read everything, but I couldn't find anyone who said that quitting made a big difference.  Maybe I'll be able to make my own post to that effect.    But you're right.  Once I jump off, I may find out if klonopin contributed to my decline.

[[Lu...]]

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

 

[[st...]]

No klonopin last night.  Hopefully soon my cfs symptoms will resolve.

[[Lu...]]

Dmw61 I see you have settled in and doing well.  Good work!

 

Prettydaisys – I see you are on Suboxone.  Did not like this drug.  I switched from Hydromorphone thinking I needed it to complete the last 20% of my taper. I have some info on this when I tapered off.  It is hard but doable.  One thing at a time.  Clonidine worked the best.  I will find the info.  Poke me if I forget.  I have much to share and want to help everyone including myself. 

 

What dose are you on presently and how often?  Did you find links to how to stop.  Is there a reason you want to stop?  Is your pain from injury or medically unexplained? 

 

Of interest I asked this question during my meeting with a frontline addictions doc that I saw for some frontline knowledge.  I asked this question and was told, this is a common complaint and diagnosis.  She could not comment on if it was real or not as this is a syndrome.  Somatic or Neuropathic or new evidence points to fascia.  Look up Fascia and Fibromyalgia.

 

On pain:  This is a must see.

http://www.youtube.com/watch?v=4b8oB757DKc

 

Tell me if this is helpful so I know what to post and when.

 

On FM-CFS here is one site of many.  Keep in mind, the incidence is anywhere from 3-6% maximum of the population. It is a syndrome many Doctors use to provide an explanation of your condition even though you may not have it.  Stress, anxiety, lack of stage 3 sleep and drugs are accepted more than ever as a contributor or cause of chronic pain.  Lack of sleep (Benzos affect this so much) is one of the single most contributors to Chronic Pain.  It is used in torture.  A study was done with sleep deprivation and the subjects after several days developed chronic pain that subsided, thankfully after regular sleep.

 

FM and CFS when you understand the syndromes will be fairly clear if you may or may not have this.  We will know when we are off the Benzos.  But must keep in mind, it could be a Somatic or Neurological cause.  In short, this is one of the last causes you should accept.  Remember Thisbe example on my prior post and I believe she popped in?

 

FM Symptoms and website;

 

http://fmaware.org/site/PageServerb3b4.html?pagename=fibromyalgia_symptoms

 

http://fm-cfs.ca/

 

And last I asked the frontline addictions Doc about CFS and Benzos.  She told me many arrive to get off Benzos and were diagnosed with FM\CFS.  Agreed with my statement.  So don’t believe anything read.  I did.  For several years as I wanted to believe I had something.  Below is my question and the answer is yes.

 

Is this common?

I was told it was CFS 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.

 

Hypothyroid: Can occur with the long term use of Benzos? Is it connected?

 

 

 

[[el...]]

I am feeling better as I go lower in dose - more clarity of thinking.  Debilitating fatigue on and off during taper but never while I was on a steady dose.  I believe that the body is reacting/repairing as the k dose gets lower, causing fatigue.  No rhyme or reason as to when it comes on though.

[[Ti...]]

I was on Ativan (low dose) and now tapering Valium (low dose) and I was hit with the debilitating fatigue and weakness when I stopped taking Ativan a year ago and switched to Valium.  I believe that dropping the Ativan caused a shock to my system, thus causing the CFS symptoms.  Have not been diagnosed (and don't want to be) as I NEVER had these problems prior to the Ativan/Valium.  Am hoping everything clears up once I am off completely.

[[pr...]]

lunaticus,

 

i got on the suboxone because i had bad opiate addiction and i became an "accidental addict" with suboxone. i was pretty much pushed into it by a doctor as i did not wish to be on it and he told me it was one of the best drugs around and one of the safest.

it's been over 5 years! i was also on subutex for a long time. i did get off both for about 4 months and it was very difficult. but i was tapering from benzo's then too and trying to get off of both was just too hard for me.

 

i will not taper from suboxone until i am more healed from this benzo withdrawal c/t. it's been 11 months and 6 months since a rescue benzo and i have finally turned a little corner. i am on 12 mg. suboxone and that is where i will stay until i am ready. i hope it will be soon i don't like the constipation the suboxone cause me but it does help me to relax a little.

 

thanks, pretty

[[Lu...]]

lunaticus,

 

i got on the suboxone because i had bad opiate addiction and i became an "accidental addict" with suboxone. i was pretty much pushed into it by a doctor as i did not wish to be on it and he told me it was one of the best drugs around and one of the safest.

it's been over 5 years! i was also on subutex for a long time. i did get off both for about 4 months and it was very difficult. but i was tapering from benzo's then too and trying to get off of both was just too hard for me.

 

i will not taper from suboxone until i am more healed from this benzo withdrawal c/t. it's been 11 months and 6 months since a rescue benzo and i have finally turned a little corner. i am on 12 mg. suboxone and that is where i will stay until i am ready. i hope it will be soon i don't like the constipation the suboxone cause me but it does help me to relax a little.

 

thanks, pretty

 

Ultimate Fibre. So good for the constipation. A little more pricey than normal fibre, but easier on the gut and has pro-biotics.

The suboxone is prescribed to prevent "diversion".  To remove possiblity of illicit drugs use.  We were better off on regular opiates.  Too late now they changed you from the subutex that did not have the naloxone in it.  this is to prevent overdose and to prevent people injecting it.  This is why you are on Suboxone.  12 mgs is high for maintenance.  8 would be more appropriate.  If you have chronic pain either from injury that is one thing.  If from benzos, or medically unexplained, that is another. Watch the video I posted earlier on Understanding Pain.  Really good.  And "they" wanted me to stay on Suboxone once I made the stupid decision to change thinking I would have an easier time getting off.  Anyways, there is a proven method and it can be done.  I will find my reference for it.  I got angry when down to 2mg and just c/t'd.  It was hard for about two weeks and no sleep for a month but in hindsight, this was from the w/d of the benzos that I had no idea about. I knew about opiates and was never afraid of them.  I will find the withdrawal method.  If I forget, PM or post in say 4 weeks.  You can start tapering slowly now to 8 and even down to 4mg.  Each mg is about 30mg Morphine.  The drop will not be noticable in terms of pain and you will save yourself some money on prescriptions as it is more expensive than regular opiates. I think it is now available as a generic. Check if you don't have insurance. IMO and from what I read and told from frontline addiction clinics, 8mg is ideal for maintenance and 4 will likely to the trick.  It binds much more strongly.  When in serious withdrawal, clonidine was the best!!  It also has a very long half life of 48hrs.  I hope you have read the monogram. There is a lot of info out there.  I will provide the taper schedule when I find it in my favorites.  Got so many while researching. Should have researched the Benzos first. 

 

Not one Doctor throughout this ordeal, mentioned the Benzos were likely the cause of my "illness".  To this day, they don't suspect the obvious.  Amazing.

[[...]]

Many websites list symptoms of FM and CFS and state that diagnosing these syndromes is pretty straightforward because they symptoms cannot be mistaken for anything else. However, the reality is that almost anyone who has some of the symptoms, regardless of how intense they are, can easily get diagnosed with either syndromes or both as long as you have a willing doctor (or a stupid and lazy one who doesn't want to look further). These are waste-basket diagnoses and it is thought that they are not really one syndrome but different illnesses, both physical and mental, that were thrown together unto one pile because nobody really knows what's going on with these patients. Most doctors will also tell you that both CFS and FM are incurable even though many have recovered completely or almost completely, and nobody gets progressively worse unless they don't make necessary life-style changes. It's easy to identify with the diagnosis but if a doctor told me I have CFS or fibro I would try anything to prove him wrong. Especially in this case. Benzo withdrawal can easily be interpreted as CFS or fibro and it often is.

[[Lu...]]

Most doctors will also tell you that both CFS and FM are incurable even though many have recovered completely or almost completely, and nobody gets progressively worse unless they don't make necessary life-style changes. It's easy to identify with the diagnosis but if a doctor told me I have CFS or fibro I would try anything to prove him wrong. Especially in this case. Benzo withdrawal can easily be interpreted as CFS or fibro and it often is.

 

And so my links to symptoms and Understanding Pain.  It is so true and also our experiences contribute.  The video is a must see.  It will jar the brain and maybe bring some out of their confusion. 

 

Must take the mind approach and if on multiple meds, eliminate those that overlap or could be contributing to the problem.  It is a wastebasket diagnosis. But this is how the Doctor gets you off their back. They can only make you comfortable and if good, lead you in the right direction.  Perhaps this label will get the person to change and get better.

 

The mind is really a challenge.  I wanted to believe I had something until I "woke" up.  Now I will prove to myself and Doctors this is not FM.  I know this and not in denial. On my chart and to receive CBT and pain reducing therapy, I am FM.  Whatever works as a means to an end.  Better to take advantage now before the system is drained and help is cut off. 

 

 

[[...]]

Also, I have never met anyone with CFS or fibro who doesn't have other health issues, diagnosed or not, and it is often unclear what came first and what the main issue is. Some are obviously ill on a mostly physical level, some are depressed and aren't doing anything about it, others are overweight and so they are putting a lot of stress on the body (obesity is a major risk factor for fibromyalgia), most will tell you they were leading very stressful lives before they got ill so there could be your cause, and a large number of CFS and FM patients have a psychiatric background. For all we know it could have been their previous treatments with psychoactive medication that made them physically ill in the first place. Look at us: we became ill due to the benzos and the withdrawal. I know for a fact that many CFS patients take Klonopin or something similar because it is considered standard treatment for this illness.

 

I spent some time on a CFS forum because I wanted to find out what their illness is about and if the diagnosis could apply to my own situation. Once I mentioned I was on benzos for years and had withdrawn from them, everyone stopped replying to my posts. No one seemed to be interested to explore the possibilities of my getting chronically fatigued as a result of the benzos, probably because many CFS patients are drugged up themselves and believe their drugs are necessary. All I asked was if there had been more people like me who were uncertain if they had CFS or if they were in benzo withdrawal. No response. They must have thought I was questioning their illness or something. I'm not completely sure why they lost interest in me, but the way they reacted does give an idea of the type of people that can be found on the CFS forums, and consequently, the type of people that get diagnosed with CFS.

 

I happen to have two friends who were both officially diagnosed with CFS and fibro. I realise it's only two people and I shouldn't make generalisations, but both of them have major mental issues they are not addressing (both of them refuse to go in therapy), both are severely hypochondriacal, they are both obese and have never had any form of exercise in their entire lives, and they both love unhealthy foods. One of them was on different meds including antidepressants before getting diagnosed with CFS, and the other one says he didn't take any medication but he did drink a lot (and he could be lying about not taking medications as he always thinks he's dying and he looks like he would pop a Xanax any time). I have never understood how these two people could be diagnosed with CFS and fibro without any psychological screaning and without addressing their other health issues first. After all, both CFS and fibro can only be diagnosed if all other possible causes are excluded, and in these two cases they were definitely not. The ease with which they were diagnosed is astonishing, to say the least.

 

Anyway, if my two friends are representative of what CFS and fibro entails, in all honesty I don't want to be associated with those syndromes. It's not really the name that counts but it's all about dealing with your symptoms, and every person has a unique set of symptoms and a unique background.

[[rh...]]

I began feeling an overwhelming, debilitating mental and physical exhaustion. Mainstream doctors kept telling me it's because I'm a Mom with little ones. I knew something was wrong with me, it was way beyond a fatigue I had ever experienced.

 

I was sick and tired of being sick and tired. Decided to see a Naturopath, which was the best thing I ever did. After running some tests, mostly blood, I was diagnosed with Epstein Barr Virus, I also found out I had Hepatitis C. The only treatment for the EBV was supplements and giving myself weekly injections of b12. They also said I could go on an antidepressant, but I opted out on that.

 

I gradually improved over time, it would flare up, but I was doing good for the most part. Then I began the first round of treatment for the Hepatitis C, hoping to get rid of it, but it didn't happen. The treatment(chemo) for the Hep. C caused severe insomnia and horrific panic attacks. That was when I was first prescribed a benzo. At the time it was a god send.

 

Over an 8 year period, I went through four rounds of chemo for the Hep. C, and the doctor kept increasing my Xanax and  Klonopin. I took them not knowing what they were, just that they helped with the severe panic attacks, and insomnia.

 

In 2004 the Hep. C cleared, after a year of treatment. I had to file for Social Security Disability in 2004. I had my hearing in 2007, was approved for disability based on CFS. All the documents from bloodwork showed I had chronic active Epstein Barr.  To this day, I'm plagued with a very limited lifestyle.

 

I can attest that CFS mimics benzo withdrawl. It's a real syndrome. Yes, many doctors will throw out the diagnoses of CFS when they can't come up with something concrete. But, my blood work shows without a doubt that I have EBV, sometimes called CFS. The CDC says their the same thing, I don't know. All I know is I get slammed with the debilitating mental and physical exhaustion, and it usually happens after stressful events.

 

I started taking benzos because of the toxic Hep. C treatments, not because of the EBV. Some people do take benzos for CFS.

I was at a whopping 5.5mg. X and K for 8 years. I'm now down to the equivalent of .24mg. Klonopin. I crossed over to Valium in July 2011.

 

CFS is real, some people can rid themselves of it, I'm not one of them. I've never up dosed throughout my taper, even though I've wanted to. This is the hardest thing I've ever had to go through, but I'm determined to be benzo free someday!

 

RG

[[Lu...]]

No klonopin last night.  Hopefully soon my cfs symptoms will resolve.

 

Way to go stevie.

 

A jumper!  You will know in a day or two.  It may hit or may not.  If the Benzo dog bites, it will be over in about 36 hours. It improves with each hour. Stick to what you normally do. It may be your last "recovery" period after a cut or nothing.  Either way, you are on your way.....

 

 

[[pr...]]

Way to go Stevie, that is awesome!

 

Hey Lunaticus, what did you mean 'if the benzo dog bites?' only because throughout all of tolerance w.d and after the cold turkey, when i dream--the symbol for how my nervous system is doing comes up in my subconscious mind as dogs. always as dogs. sometimes it will come up as my cat when she was alive--but mostly it's dogs and the dogs are not biting any longer. and the little puppy that was in my dream today was happy and little and playing--so i always know that is my nervous system talking to me and telling me how it's doing and where it's at in this benzo withdrawal.

 

and in continuing this thread:

 

i think basically if one's thyroid is not functioning properly no health can be had.

[[...]]

Hi RG,

 

Not everyone with a CFS diagnosis has abnormal bloodwork. In fact, abnormal bloodwork should rule out a CFS diagnosis, as far as I know. What you had was Epstein Barr Virus and Hepatitis C. Some will call it CFS but the vast majority with such a diagnosis has no negative test results or abnormal bloodwork, and you are an exception. I'm also not sure if the Epstein Barr virus is responsible for CFS. I think there was a time the medical community tried to link CFS to this virus, but at this point I think that is no longer an accepted theory.

 

Here is what Wikipedia says about CFS:

 

"There are no characteristic laboratory abnormalities to diagnose CFS, so testing is used to rule out other potential causes for symptoms. When symptoms are attributable to certain other conditions, the diagnosis of CFS is excluded."

 

"The name chronic fatigue syndrome was used in the medical literature in 1987 to describe a condition resembling "chronic active Epstein-Barr virus (EBV) infection" but which presented no evidence of EBV as its cause. "

[[Lu...]]

Way to go Stevie, that is awesome!

 

Hey Lunaticus, what did you mean 'if the benzo dog bites?' only because throughout all of tolerance w.d and after the cold turkey, when i dream--the symbol for how my nervous system is doing comes up in my subconscious mind as dogs. always as dogs. sometimes it will come up as my cat when she was alive--but mostly it's dogs and the dogs are not biting any longer. and the little puppy that was in my dream today was happy and little and playing--so i always know that is my nervous system talking to me and telling me how it's doing and where it's at in this benzo withdrawal.

 

and in continuing this thread:

 

i think basically if one's thyroid is not functioning properly no health can be had.

Prettydaisys

 

Interpreting Dreams:  I like this kind of stuff.  Recently I am starting to dream again, but fragmented and really don’t remember.  Bits and pieces. This is a sign I am healing. 

 

Dogs symbolize friends.  A friendly pooch means happy times ahead in good company. To dream of a vicious dog, means trouble.  If a vicious dog succeeds in biting you, it is a sign that you or some loved one is on the verge of insanity, and a deplorable tragedy may occur.  - no kidding about the insanity.

 

 

The little puppy is a good sign.  Your social life is about to get better also.  Your demons are behind you. The tragedy is over for you. You are healing.

 

 

Thyroid is so often overlooked.  Not only TSH should be measured, but AB tests to see if this is an immune system attacking it.  Could be the drugs as discussed or coincidence. Nonetheless, should be checked along with colonoscopy.  Shingles vaccine should be considered for those that had chicken pox. FYI.

 

 

[[st...]]

I tried drycutting away the last 1/8th mg of my klonopin, but at 50 hours into it my tinnitus got much worse and I had an anxiety attack over it.  So I had to reinstate back to 1/8 mg.  Fortunately my tinnitus is now about back to my base level and I need to decide how to proceed from here.  I figure I should wait a while, about a week, and then start a liquid titration.  Any advice would be appreciated.  My taper up to this point has been fairly uneventful but clearly I am going to have to slow things up a lot.  These benzos are incredibly powerful and should be handled with caution.

 

I posted the above over in general taper plans.  I guess I should have done it over here.  Anyway, I also got tense and feels like I have a minor muscle pull in right upper shoulder.  Any advice on how to proceed?  Maybe cut 10% of the 1/8th mg per week?  That tinnitus was scarey.  If it continued like that, I don't know how I could have tolerated it.  Thank God it resolved quickly.