Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Not diagnosed with CFS, but having somewhat similar symptoms, underlying 'CFS' ? (taking clonazepam)

Discussion in 'General ME/CFS Discussion' started by Braz, Oct 18, 2016.

  1. Braz

    Braz

    Messages:
    59
    Likes:
    11
    Today I read: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/ It made me think.

    As a backstory, I have been taking clonazepam 2 mg (Klonopin) each day for many years. Originally as a muscle relaxant.
    For sufferers of CFS this drug is sometimes prescribed for 'central sensitization'.

    A number of years ago my health started going south after a somatic issue caused extreme insomnia, followed by chronic exhaustion. In a way, I have never been the same. That original somatic issue has since been resolved. However, to keep it simple, since then several other things went wrong, 'healthcare' wise. (crappy healthcare system)

    I'm a wreck, the clonazepam is pretty much 'untaperable', and I feel rather 'sensitized' !

    My understanding of CFS is limited. But this article made me think. Unrestorative sleep ? Only partially. No immune issues. Not the extreme exhaustion of CFS.

    But I get extreme reactions to exercise, defined as more than walking more than 100-500 meters a day. insomnia.

    Now, up to a point this is tolerable. But when I try to taper or discontinue clonazepam ...For example, I can't do any real exercise while tapering or after I had stopped taking the drug (once upon a time).
    One could call this 'benzo withdrawal', interdose withdrawal/tolerance withdrawal if nothing else.

    I'm not asking for a whole list of supplements ... But I wonder if there are any underlying CFS-like issues. or how to approach that. My health has gone down the gutter in the past few years. Muscle wasting, hormonal issues, (extreme) insomnia, lack of energy, neurological issues, extreme dependence on the drug.

    Any suggestions ? I should add that I believe this drug is harming me.
     
    Last edited: Oct 18, 2016
  2. taniaaust1

    taniaaust1 Senior Member

    Messages:
    11,916
    Likes:
    12,775
    Sth Australia
    If you believe this you probably should come off of it. There are people on this website who can probably share with you how to try to tamper it having been there themselves.

    reading what you posted, I cant tell if you have ME/CfS or not or how much is to do with maybe side effects of a drug which may not be right for you but you do have a fairly strong indication there that you may have ME/CFS.

    getting extreme reactions to exercise (including stuff like insomina to exercise) is the kind of thing ME/CFS people do get which is unusual in other illnesses so may point to ME/CFS

    As far as the sleep thing you've read, Ive got ME/CFS and can feel restored after sleep sometimes if I get enough sleep (which may be lots and lots of sleep or rest) but the thing is that energy or feeling better gained doesnt at all last, my ability on how much I can do before I get a ME symptom flare doesnt really improve on rest

    (though preemptive resting does help a little so hence why most with ME/CFS do take extra rest). I can still only be on my feet doing things for a short amount of time no matter how much rest or sleep I do. So though I can feel good, it wont last if I try to do stuff. It sounds like you have this issue as you still cant walk far even if you've slept well. You may "feel" restored after sleep but you actually arent which you see when you go for a walk.

    ME/CFS isnt just feeling "tired or exhausted" all the time as too many people who dont understand the illness lead others to before, its about a complex of symptoms which flare up on exertion and dont get better with just a normal rest period.

    Many people who have immune issues may not even realise they do so. So not thinking you dont have this doesnt exclude you possibly having ME/CFS

    I suggest to try to find yourself a dr who specialises in ME/CFS to find out if you do have this or not rather then be guessing you may have as you do have things which point to possibly ME/CFS. If you have severe hormone issues you should be seeing a specialist for that too for whatever areas your hormone issues are in, I have two different specialists for my hormone issues (one was dealing with my low testosterone caused by the ME/CFS and the other was dealing with my insulin issues).

    if you want to try out things people with ME/CFS often try and sometimes do help a bit (note not cure though!), probably the most common thing trialed which can be done without a dr is things used in methyation protocols eg B12 (but may need certain forms of things) etc (this site probably has a methylation forum area but I cant remember right now).
     
    Last edited: Oct 18, 2016
    barbc56 likes this.
  3. geraldt52

    geraldt52 Senior Member

    Messages:
    399
    Likes:
    1,549
    It appears to me that you are stuck in a typical benzo dependence quagmire, Braz. I don't think that the totality of the side effects of Klonopin is even known. I really don't see any way that you're going to be able to decipher what is going on with you unless you find a way to get off the Klonopin first. Maybe you need the help of an addiction clinic/doctor. Have you spoken to the doctor who is prescribing the Klonopin for you? Some doctors are clueless, but it doesn't hurt to ask.
     
    A.B. and taniaaust1 like this.
  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    2,018
    Likes:
    5,113
    USA
    This is not normal at all. Can you describe what you mean by "extreme reactions to exercise?"

    What symptoms due you experience when you are exercising (walking)?
    What symptoms do you have after you exercise?
    How long do those symptoms last?
     
  5. Braz

    Braz

    Messages:
    59
    Likes:
    11
    @geraldt52,

    I've talked to the docs who prescribed the drug ... they were not helpful at all. The one who initiated it dismissed me after writing a taper schedule, dismissing my issues as 'discomfort'.
    The GP who continued writing it for so long said at first, 'just stop taking it', and later 'it's mental'. I switched GPs but that didn't exactly improve things ... for the most part, he adopted the opinion of the former GP, just with an empathic attitude. I'm pretty much through GPs in this town ...

    I've been to my share of addiction docs. A local one suggested tapering off with oxazepam, which is extremely short acting. He just didn't have the experience with this sort of thing, he was responsible for the inpatient detoxes. He was probably good with opiates or amphetamines ... One other doc had at least some affinity for and experience with 'benzodiazepine addiction', but he moved on to research and is no longer available. That's pretty much all the addiction docs in this country. I don't think the others know more than they learned from their textbooks. A highly potent AND long acting benzo like clonazepam is rarely prescribed in this country. It is is impossible to find someone who has experience with clonazepam, except perhaps a neurologist (referral required, GP was acting difficult, it is doubtful if there is even one who could help me). If diazepam, Librium (or Tranxene) don't work, they just don't know most likely.
    And using gabapentin or Lyrica like in the USA is not done, except for neuropathic pain (formal indication).
    A horrible healthcare system.
     
  6. Braz

    Braz

    Messages:
    59
    Likes:
    11
    @CFS_for_19_years ,

    While exercising in the gym or running, even briefly, at medium intensity: I tend to feel fine mostly. With running, it seems my body likes to produce glucocorticoids (I know, that's an interpretation since nothing is being measured...). maybe some adrenaline, not that much. Epinephrine, sometimes not much, sometimes way too much.
    In the gym/weight/machines: fine while exercising, often a warm/hot glow emanating from nerves or muscle fibers(??).

    A couple of hours later, my body tends to cool down. Elevated threshold to fall asleep. The clonazepam will feel weaker after exercising. There is a 'systemic effect' of this type of exercise. That's not new, I used to do bodybuilding but the reactions were not that extreme/bizarre.

    A few weeks ago I rode on a bike in the afternoon, twice 30 minutes. The intensity wasn't high. But afterwards it felt as if my muscles were damaged, especially in the upper body.

    Earlier this year, I had to empty a full closet and move some other things. It was heavy ! Normally it wouldn't have been a bog deal, but it took a lot of time. Maybe there was a recovery reaction after that, then muscle strength/volume declined again.


    Absolutely no problems after walking 100 or 1000 metres.

    A few years ago, the effects of 'systemic exercise' (at a higher intensity) could last up to two weeks. Now it's murkier.

    I suspect relatively low levels of t3, possibly too much reverse t3, testosterone unknown, too many glucocorticoids (?), HPA axis dysfunction/overactivity, too little HGH. Of course, the general digestive issues and insomnia are not helping ...
    General tendency to lose muscle mass (it's hard to go lower), some tendency to lose subcutaneuous fat, increase visceral fat.

     
    Last edited: Oct 19, 2016
  7. Braz

    Braz

    Messages:
    59
    Likes:
    11
    I just did some minor shopping ... now my arms/muscles hurt. This is not normal for me.
    I've never been diagnosed with CFS, I don't think I have 'true' CFS. But this is not good, not normal. Honestly, it's getting scarier.
     
  8. cman89

    cman89 Senior Member

    Messages:
    429
    Likes:
    190
    Hayden, Idaho
    This really does sound, to me, like much more of a clonezapam related issue, then actual CFS. Most people with CFS have either acute or gradual onset with infectious or immune insult origin. That being said, I have dealt with insomnia in the past, and the exhaustion from that is actually what led me to research on CFS in the first place. The main differences in exhaustion are the insomniac exhaustion can be gradually resolved with proper pacing, and effective supplements. Basically, your adrenals and CNS get run down, and need to be built back up. ME is more like an autoimmune condition where the nervous system is altered somehow (likely over-sensitized) and remains locked in a dysfunctional state until something (an science is working on it) brings it back out of that state. Regarding the clonezapam, I really do think that the bodily adjustment to this med is a major factor of your illness. Medications like that, while "calming" the system, can cause neurochemical alterations that affect the body as a whole. I would encourage you to really look at tapering methods, and perhaps attempting alternate therapies to ease a taper. And that, is not my expertise, so I leave you, dear sir. Good luck.
     
    Dechi likes this.
  9. edawg81

    edawg81 Senior Member

    Messages:
    104
    Likes:
    266
    Upstate, NY
    I'm not sure exactly what is involved in your case other than I used to have similar symptoms after being on clonezapam for over a year due to a severe anxiety episode, then a few months after I tapered off I had my acute viral onset to cfs me. My advice would be to consider a water titration taper at minimal rate. Its amazing how gradual you can make those and trick the body into not noticing the decreased dose. I did OK on it, got off and felt great for a few months until my recent onset. I had other ANS symptoms for a number of different years including pvfs as symptoms increasing in severity before my onset. If you get weird symptoms after getting sick be very careful. In addition to getting off the clonezapam, make sure to rest if you get unusual symptoms after an illness and don't hesitate to see a (CFS or other) specialist. CFS ME manifests itself as a number of different symptoms.

    Sadly right now I am back on clonezapam and it has helped some of my symptoms (shakiness/anxiety/insomnia) but I'm sure at the cost of some dependency, and long term effectiveness.

    This reminds me of what Dr Cheney has said, not that I agree with it: Dr. Cheney has never seen a recovered patient have difficulty coming off Klonopin. He stated, "When you no longer need the drug, coming off it is very easy."

    http://www.prohealth.com/library/showarticle.cfm?libid=8021
     
  10. Braz

    Braz

    Messages:
    59
    Likes:
    11
    @edawg81,

    Thanks for that. I read that article before, but it was good to read it again.

    My CNS certainly is senzitized. And with everything going, there most likely is some 'excitatory neurotoxicity' during part of the day (24 hours period).Not a good state to come off !

    Clonazepam improving cognitive function, that sounds familiar. 'At the beginning of their illness, many patients report feeling exhausted, yet also strangely "wired."' Not unfamiliar.

    But aside from health, I also deal with a partly paradoxical reaction to this drug. Mixed sedating/stimulating effects ... I can't split the dose, diazepam is so different.
    It has been too many years ... And I allowed that stupid GP to try taper me off with lorazepam, ever since I have been 'in withdrawal'.

    It is indeed hard to say what is going on. But a direct, regular taper ....This body is broken.
    Sorry about the negativity.
     

See more popular forum discussions.

Share This Page