Depersonalization

[Redgreen33]

Hello I am new to the forums I have not been diagnosed with anything as of yet , I have had 2 doctors say possible cfs , I have been trying to rule out m.e both dr have have told me absolutely not , which. Don't understand , they acan do that based on a 40 minute visit with all they have is a CBC results .

My biggest symptom is depersonalization without anxiety , I do have fatigue that is not usual for me and has been going on for 2 months , and vague muscle pains mostly stiffness not unbearable by any means , also have night sweats and wake up at least twice a night and don't fel refreshed in morning

I'm not sure if I have pem because I stay at pretty much a steady state of tiredness but has at least kept me from doing less than 50 percent of what I was ding but I mainly think its due to the depersonalization

I have read a bunch of different sites that have symptoms of m.e and I find I have some of them , my symptoms are fatigue , unrefreshing sleep , sweats , bad concentration , and this feeling like I'm high all the time and frequent awakenings but fall right back to sleep

The only symptom I had was fatigue and my doctor gave me Zoloft because I have been a hypochondriac for years and have been driving him crazy . As soon as I took the Zoloft I went nuts and took it for two weeks , stopped a week ago and have depersonalization ever since .

This all started in December when I had major bloating then was cured with ppi , went to Jamaica got a small upper respiratory infection day before I left , was given antibiotics that I didn't finish completely because it gave me bad diarhea . 2 months later the fatigue came on , wasn't overwhelming or constant but was annoying

My doctor gave me the Zoloft , from the first night I took it I went crazy , didn't sleep for 3 nights had to take melatonin to get to sleep , since then I have been completely depersonalized , i am able to go through my day but I don't know who i am , I feel far way from things and people feel disoriented at times and feel Ike I zone out and have short attention span.my question is , is it possible I have m.e and besides Lyme can autoimmune disease cause depersonalization as pretty much my only symptom besides being tired ?

Please don't think I'm trying to discount the severity of m.e or anything like that I do understand how much you all suffer and my heart goes out to you all , I know that I am a huge hypochondriac , but I now my body and know I am not right atthe moment and sing my mind literally and it has been very worrisome

 

[SOC]

My biggest symptom is depersonalization without anxiety , I do have fatigue that is not usual for me and has been going on for 2 months , and vague muscle pains mostly stiffness not unbearable by any means , also have night sweats and wake up at least twice a night and don't fel refreshed in morning

I'm not sure if I have pem because I stay at pretty much a steady state of tiredness but has at least kept me from doing less than 50 percent of what I was ding but I mainly think its due to the depersonalization

I have read a bunch of different sites that have symptoms of m.e and I find I have some of them , my symptoms are fatigue , unrefreshing sleep , sweats , bad concentration , and this feeling like I'm high all the time and frequent awakenings but fall right back to sleep

This does not sound like ME/CFS. Your symptoms could be the result of a number of different conditions, including some of the psychiatric conditions you have mentioned here and in other posts. It would be a good idea to insist your doctors address your symptoms, even if they don't know the cause. Poor sleep, for example, is treatable and could be the cause of tiredness and poor concentration.

PEM is not just tiredness. This, from the ICC, is PEM:

This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.

If you want to know if you have ME/CFS, your best option is to go to one of the top ME/CFS specialists for a diagnosis. The illness definition is too complex for self-diagnosis or pseudo-diagnosis by patients via internet conversations. In fact, very few GPs or non-ME/CFS specialists can make a correct diagnosis of ME/CFS.

It sounds like you have some very serious problems, but they are probably not ME/CFS. If I were in your shoes, I would pursue more treatment for your symptoms, especially sleep, depersonalization, and psychiatric issues. I might try to get testing for other fatiguing conditions. Ultimately, if you really think you have ME/CFS, spend the time, effort, and money to see a top specialist for a diagnosis. That's the only way you'll really know, and with your hypochondria and OCD, having a clear yes or no is probably the best thing for you. Otherwise you'll just keep worrying, and that cannot be good for you.

 

[brenda]

@Redgreen33

The same thing happened to me regarding depersonalization.

It happened around the time I got married, 30 years ago and I can distinctly recall that I felt like I had entered some sort of alternative reality. I also became sicker than I was but did not know at the time that I already had cfs from mercury poisoning.

I only really thought about it after reading this thread http://forums.phoenixrising.me/index.php?threads/the-undetectable-infection.26770/ and Elph68 talking about streptococcus sanguinis. He says that the infection can be transmitted sexually and he thought that my (now) ex most likely infected me. He certainly had symptoms looking back. Also around that time I had problems with my joints especially the shoulder and now find out that strep is implicated in 'frozen shoulder'. It has come back of late at the same time as candida has flared.

Elph68 says that it is very hard to get rid of as it has become resistant, but I am not going down the same route of antibx. It is also he says hard to get it dignosed.

 

[taniaaust1]

I wouldnt take a guess what you have but as the other said cause your case isnt an obviously ME/CFS case, get yourself to a very knowledgable ME specialist for an opinon on what you do have. Dont let doctors just throw you into the CFS wastebasket.

One thing you've been told thou which Im doubting from the things you said is your hypochondriac diagnoses. Im doubting this as you said you get depersonalization without anxiety. Ive come across 2 people who were hypochondriacs and they both had very obvious hypochondriac issues and hence were always in an extremely anxious state so hence were big anxiety suffers too. Anxiety goes hand in hand with hypochondriac as far as I can tell. You post isnt even written in a paniced kind of way but clear and quite to the point and sounds very rational in its thinking.

Your depersonalisation.. obviously you need to find out what is causing it, not just mental health issues can cause it but as you said you got it right after taking it drug.. maybe the drug has done something to you.

Your frequent awakening in which you fall straight back to sleep...and then wake up feeling unrefreshed...and being in a steady state of tiredness. Could be due to sleep apnea. Maybe see if you can get that rule out. Sleep apnea can cause bad concentration due to not getting enough sleep too.

I'm not sure if I have pem because I stay at pretty much a steady state of tiredness but has at least kept me from doing less than 50 percent of what I was ding but I mainly think its due to the depersonalization

I myself wouldnt say you have ME/CFS... your case isnt clear enough to really know and to put that label onto you could end up being very wrong.

 

[golden]

@Redgreen33

Whilst dealing with all this, if it were me andcif i could afford it, i would get a course of treatment from an experienced Reflexologist.

Good Luck,
Golden

 

[Redgreen33]

Thank you for all your responses , I'm actually not anxious state constantly but I can honestly admit that I am a hypochondriac and have no problem saying that ,I am trying to be calm about it but no one has to tell me that I am I know am .

@ Brenda
I doubt I was passed on something sexually , but an unknown infection could be the cause , is there a way I can have tests where I can check for every single hidden infection , in gut or everywhere else .

This is all very confusing to me because most days I don't really feel sick at all , I'm just out of it , I wake up sore and foggy but it tends to lift very soon. But the depersonalization is there constantly , I know where I am I can do everything but it's like my minds playing tricks on me , very weird .

Brenda did that alternative reality feeling go away ?
I just feel zoned out and it makes me sick

 

[PNR2008]

I've had times in this "disease process" that I've felt so unworldly and usually it was because of new meds.

When I first took Zoloft, I took one eighth of a pill and painted the side of my house. Unfortunately that doesn't happen anymore. Paxil gave me "demon drops" a feeling of falling 5 floors in an elevator quickly and it took me a whole year of nuerontin at 100mg to get out of bed, taking it on and off and as a sleeping pill.

Some medicines warranted constant trying but many were not worth it, and a few I make a cross with my fingers as if warding off a vampire if a doctor even mentions them.

 

[Aerose91]

I can almost guarantee you 100% that your DP is due to Zoloft withdrawal. The fatigue you had before it I don't know and you will want to investigate but the DP, bad sleep etc can all be directly from the pill.

2 years ago I was given ativan by my doctor to counter the hyper effects of thyroid medication. I only took it for 10 days and reacted terribly to it so they told me to just stop taking it. I spun into the most God awful, horrendous withdrawal with over 80 symptoms- the worst being depersonalization. There were other horrible things like zero sleep, panic attacks, halleucinations, major nervous system damage etc.. I won't get into it all here.
If this all started right when you got off the pill then it's too coincidental not to be. I'm sure you can pop on a forum online and find other stories such as yours from Zoloft. The thing is that psychiatrists and the doctors who prescribe this stuff have NO CLUE that it can do this to people.
The good thing (kinda) about medication withdrawal tho is that all you have to do is cope the best you can and in time you will recover. The DP sucks, but it will pass.
I'm not a doctor or anything however so I would still get to a functional medicine doc and see what they can find, but know that you probably have an answer to your situation.

 

[brenda]

Hi yes it faded as l did things like quit gluten and l can't tell how much is still there. If you read Elph's thread you might find where to get tested for infections. I cannot say as l have never been done.

 

[Redgreen33]

Thank you all for your input , aerose , I just want you to know that I have read your other posts and know that I pray for you, I hope you have had some sort of relief from the symptoms I read you have , please don't take that in wrong way .

I'm just very worried that one I have dp from some unknown infection that's lingering , I really doubt Lyme disease , the other symptoms don't fit . I do worry I have m.e or cfs or something similar maybe a mild form because like I've been saying , unless I have a very gradual progression .

Does anyone know of any know of any me specialist close to Montreal , I know Byron Hyde is not far but I feel like I will be dismissed by him because , he states that people with m.e have a very sudden onset and can tell the day they got sick , not the case with me , I was very tired , no pain , no fog , , freaked out went on Zoloft and went down hill on that.

Also the absence of p.e.m , I mean I'm tired after doing things but don't get worse or am knocked out by any means . So dropping 3000$ to go see him ...I dunno about that

 

[peggy-sue]

I've been responding in your other thread, but agreeing with Aerose completely about your current trouble being both trying to get on, then coming off, the Zoloft.

It will pass.

Then you'll still be stuck with whatever is wrong, but this bit will be gone.

 

[Aerose91]

Thank you for your kind words, Redgreen. I wouldn't get too caught up in thinking that you have a hidden infection somewhere- I mean, everyone has latent viruses and such, it's just a matter of our immune systems handling them.

Take solace in the fact that your situation doesn't sound like M.E. to me at all. ME is a very defined disease process and you have many other culprits that can fully account for what your going through, plus you don't have some of the key elements needed to be diagnosed with ME. Think of Occams Razor- the most likely solution is usually the correct one. Your DP and brain fog correspond too perfectly with your coming off the Zoloft (a drug known to cause DP) for it not to be that.

A quick back story- when I came off the ativan and got hit with so many horrible symptoms (I'm talking unbearable, I nearly took my life several times) I was the only one who thought it was the ativan. My doctor and friends all thought I was on it for too short of a time and had to be something else. They had me checked for brain tumors, multiple diseases and found nothing. They then concluded that I was just going crazy. Crazy, out of the blue, for no reason, but I knew it was the ativan- too coincidental that all of these things started the day I got off it. Ultimately I found some benzo support groups online and saw a psychiatrist who confirmed my theory. Despite no one believing in it I was right all along.

So, moral being you have to look at what makes the most sense and even though it's tough, try not to get too anxious about other, scarier possibilities. It sounds like your fatigue issues may be coming from something due to the antibiotic you took- antibiotics can be toxic to our systems and hinder mitochondria function. I know people who thought they had CFS then completely cured themselves after taking phosphatidycholine (restores cell and mitochondrial membranes). You may find some interest looking into the Patricia Kane protocol.

As peggy-sue said as well, I think in time you will come down from this and be back to yourself, I have no doubt that you will recover 100% of your health.

 

[Redgreen33]

Thank you for your kind words, Redgreen. I wouldn't get too caught up in thinking that you have a hidden infection somewhere- I mean, everyone has latent viruses and such, it's just a matter of our immune systems handling them.

Take solace in the fact that your situation doesn't sound like M.E. to me at all. ME is a very defined disease process and you have many other culprits that can fully account for what your going through, plus you don't have some of the key elements needed to be diagnosed with ME. Think of Occams Razor- the most likely solution is usually the correct one. Your DP and brain fog correspond too perfectly with your coming off the Zoloft (a drug known to cause DP) for it not to be that.

A quick back story- when I came off the ativan and got hit with so many horrible symptoms (I'm talking unbearable, I nearly took my life several times) I was the only one who thought it was the ativan. My doctor and friends all thought I was on it for too short of a time and had to be something else. They had me checked for brain tumors, multiple diseases and found nothing. They then concluded that I was just going crazy. Crazy, out of the blue, for no reason, but I knew it was the ativan- too coincidental that all of these things started the day I got off it. Ultimately I found some benzo support groups online and saw a psychiatrist who confirmed my theory. Despite no one believing in it I was right all along.

So, moral being you have to look at what makes the most sense and even though it's tough, try not to get too anxious about other, scarier possibilities. It sounds like your fatigue issues may be coming from something due to the antibiotic you took- antibiotics can be toxic to our systems and hinder mitochondria function. I know people who thought they had CFS then completely cured themselves after taking phosphatidycholine (restores cell and mitochondrial membranes). You may find some interest looking into the Patricia Kane protocol.

As peggy-sue said as well, I think in time you will come down from this and be back to yourself, I have no doubt that you will recover 100% of your health.

Thank you for your response again, I'm sorry to hear about your withdrawal from Ativan . I will have to admit your posts were the one that scared me the most especially about encephalitis that triggered your m.e I'm worried I have that .
But your response you just wrote to me is the one that made me feel best
You are very knowledgeable , and I hope you have found some sort of relief from some of your symptoms , at least the mental ones it's very scary stuff.

I hope it's the Zoloft that caused me this dp , from the first day I took it was messed up , the first night I thought I was John cena ( wrestler) until I fell asleep , was a disaster , but as a hypochondriac I feel as if there's no way 2 weeks of low dose Zoloft gave me this bad of a mental state.

I re read ICc and ccc criteria all the time and find I may have m.e but I don't understand how bad the symptoms have to be , to fit in the criteria,

I mean I have pem I guess I mean I'm always pretty tired anyways , how bad does it have to be ? And cognitive problems how bad do they have to be ? Very confusing

 

[Aerose91]

Your very kind- but please don't let what has happened to me scare you. Trust me, there are basically no similarities between our stories. Having encephalitis is not something you wonder about- it's like getting hit by a freight train; within 1 day of getting it I was nearing a coma. Also, if you question weather or not you have PEM, you don't have it (which is great!). PEM is a bad term really, a lot of things can make someone tired after exertion but PEM with ME is different. If I as much as try to have dinner with some friends the next days, weeks or months I will have intolerable headaches, burning and stinging nerve pain throughout my whole body, an unrelenting feeling of being toxic, extreme muscle weakness, terrible memory and cognitive loss, zero sleep alternated with horrible nightmares, fatigue and many other things that come and go. This is weeks or months though, not a day or two.

I'm fairly well versed in this stuff because I studied microbiology and was a personal trainer and nutritionist before falling ill. Take it from someone who has felt great health all the way down to the pits of hell- you do not have M.E.

but as a hypochondriac I feel as if there's no way 2 weeks of low dose Zoloft gave me this bad of a mental state.

I believed the same thing with 10 days of ativan but I knew in my heart it was that because NOTHING else made sense and the timing fit so perfectly. Remember everyone's body is different and we will all react differently to drugs. I had a friend that could abuse ativan as much as she wanted (I'm talking 7-8 pills in a night!) and be totally fine, but she took a low dose of xanex for 1 week and became a complete wack job.

The unfortunate truth is that the doctors prescribing these drugs don't understand the extent in which they influence the brain. Your receptors and neurotransmitters have been disregulated and it unfortunately takes a little time for your body to rebalance again, but you WILL regain that balance and get your brain back. The best thing you can do now is listen to the limits of your body at the moment, eat a very healthy diet, get good sleep and try to avoid as much stress as possible.

If you're concerned about the fatigue issues, which anyone would be, again I would check out a functional medicine doc near you who can run some good blood work and check for things like Candida, vitamin b12 levels, vitamin d levels, hormones etc.. Also, check out the PK protocol if you want, they have some great results with people who have issues from antibiotic use and other toxin related syndromes. I know how scary it can be not knowing and fearing the worst case scenario but trust me, it's not going to be that. You will bounce back and have your life again, and it will be even sweeter than it ever was before! Feel free to ask me any questions you may have.

 

[Redgreen33]

Your very kind- but please don't let what has happened to me scare you. Trust me, there are basically no similarities between our stories. Having encephalitis is not something you wonder about- it's like getting hit by a freight train; within 1 day of getting it I was nearing a coma. Also, if you question weather or not you have PEM, you don't have it (which is great!). PEM is a bad term really, a lot of things can make someone tired after exertion but PEM with ME is different. If I as much as try to have dinner with some friends the next days, weeks or months I will have intolerable headaches, burning and stinging nerve pain throughout my whole body, an unrelenting feeling of being toxic, extreme muscle weakness, terrible memory and cognitive loss, zero sleep alternated with horrible nightmares, fatigue and many other things that come and go. This is weeks or months though, not a day or two.

I'm fairly well versed in this stuff because I studied microbiology and was a personal trainer and nutritionist before falling ill. Take it from someone who has felt great health all the way down to the pits of hell- you do not have M.E.


I believed the same thing with 10 days of ativan but I knew in my heart it was that because NOTHING else made sense and the timing fit so perfectly. Remember everyone's body is different and we will all react differently to drugs. I had a friend that could abuse ativan as much as she wanted (I'm talking 7-8 pills in a night!) and be totally fine, but she took a low dose of xanex for 1 week and became a complete wack job.

The unfortunate truth is that the doctors prescribing these drugs don't understand the extent in which they influence the brain. Your receptors and neurotransmitters have been disregulated and it unfortunately takes a little time for your body to rebalance again, but you WILL regain that balance and get your brain back. The best thing you can do now is listen to the limits of your body at the moment, eat a very healthy diet, get good sleep and try to avoid as much stress as possible.

If you're concerned about the fatigue issues, which anyone would be, again I would check out a functional medicine doc near you who can run some good blood work and check for things like Candida, vitamin b12 levels, vitamin d levels, hormones etc.. Also, check out the PK protocol if you want, they have some great results with people who have issues from antibiotic use and other toxin related syndromes. I know how scary it can be not knowing and fearing the worst case scenario but trust me, it's not going to be that. You will bounce back and have your life again, and it will be even sweeter than it ever was before! Feel free to ask me any questions you may have.

I'm sorry you had to go through that , I'm scared shitless right now I don't know what to do , what's a functional medicine doctor . I can't sleep I'm so worried about having m.e I though m.e has distinct onset ? How bad do symptoms have to be to fit in the criterias? How bad does pem have to be , fatigue , cognitive ?

 

[Sushi]

@Redgreen33 said:

I don't know what to do

See a good doctor and get some good testing. I think this is a reasonable next step.

Best,
Sushi

 

[SOC]

I'm scared shitless right now I don't know what to do

I can't sleep I'm so worried about having m.e

You need to stop and take a deep breath. You are letting your anxiety, OCD, and hypochondria take over. This is NOT good for you. Dwelling on the possibility that you might have ME is not helping.

While it is possible you have ME, it is very unlikely based on what you've told us here. You don't need to to be panicked or scared shitless or sleepless with worry at this point.

How bad do symptoms have to be to fit in the criterias? How bad does pem have to be , fatigue , cognitive ?

There is no absolute line that says, "This bad means ME, that mild means no ME." The closest defining factor is PEM, which you do not have by your description. PEM is not tiredness. It is a relapse of symptoms (flu-like, pain, cognitive) that lasts days, weeks, or months. You'd know it if you had it.

For your own mental health, you need to stop worrying about this. Look at what it's doing to you. You're panicked, you're scared shitless, you're not sleeping from worry. Ir's time to try to put a brake on this train wreck before you go right over the edge.

Sitting around worrying accomplishes nothing. If you can't let go of the fear, then do something productive with that energy and go see an ME/CFS expert who can give you a definite diagnosis. New York is not that far from you. Make an appointment and get the testing and evaluation by an expert. It's the only way you'll really know for certain.

 

[Redgreen33]

You need to stop and take a deep breath. You are letting your anxiety, OCD, and hypochondria take over. This is NOT good for you. Dwelling on the possibility that you might have ME is not helping.

While it is possible you have ME, it is very unlikely based on what you've told us here. You don't need to to be panicked or scared shitless or sleepless with worry at this point.

There is no absolute line that says, "This bad means ME, that mild means no ME." The closest defining factor is PEM, which you do not have by your description. PEM is not tiredness. It is a relapse of symptoms (flu-like, pain, cognitive) that lasts days, weeks, or months. You'd know it if you had it.

For your own mental health, you need to stop worrying about this. Look at what it's doing to you. You're panicked, you're scared shitless, you're not sleeping from worry. Ir's time to try to put a brake on this train wreck before you go right over the edge.

Sitting around worrying accomplishes nothing. If you can't let go of the fear, then do something productive with that energy and go see an ME/CFS expert who can give you a definite diagnosis. New York is not that far from you. Make an appointment getting the testing and evaluation by an expert. It's the only way you'll really know for certain.

Thank you any dr you can suggest?

 

[SOC]

Thank you any dr you can suggest?

There are at least 2 specialists in the New York City area. The ones I can think of off the top of my head are Dr Derek Enlander and Dr Susan Levine. Dr Martin Lerner is in the Detroit suburbs. Those are probably the closest to you.

 

[Redgreen33]

There are at least 2 specialists in the New York City area. The ones I can think of off the top of my head are Dr Derek Enlander and Dr Susan Levine. Dr Martin Lerner is in the Detroit suburbs. Those are probably the closest to you.

Thank you
I do need to calm down I guess ....story of my life