Can it be that I have me/cfs

[Redgreen33]

Hello again , I've posted on other threads mostly about my worry of the depersonalization I suffer from , but as hard as it is to find a specialist for cfs/me , you all seem to be experts so I'll kindly ask your opinion .

My symptoms
Tired all the time sometimes worse than others
Wake up tired
Wake up stiff muscles goes away after getting up
Difficulty concentrating on tv , reading is fine
Feeling very lost like dreamlike
Wake up frequently in night , fall back asleep
Night sweats
Muscle twitches randomly
On going for 2 months
Do not want to leave house too much brain fog/depersonalization

Symptoms not sure about
Pem , not sure because I'm in pretty consistent fog /tired I don't get sick/flu like feeling
Loose stool , once a day not watery just not good looking stools, no stomach pains or urgency
Have history of mental illness depression anxiety hypochondria tend to make things worse
I feel as if I didn't have the fog I would be fine .

Side note as I explained on other threads I was given Zoloft 3 weeks ago , made me mental stopped cold turkey a week ago and that's when things took turn for worst.

Things I fear
I fear that I have brain damage or something because of the fog and dp I sometimes feel like I lose control of my body even though I do things fine
I may have POTS because when I stand up my pulse rises no dizziness tho.

Test I have done
CBC urinalysis , going for Epstein Barr bloodiest and thyroid

2doctors said impossible I have m.e both took n hour appointment check reflex physical , tender points , both not specialist but have clients who are diagnosed with either m.e or cfs.
Any opinions

 

[minkeygirl]

I'm just curious why the docs said it was impossible for you to have ME with testing reflexes and tender points. Not part of the diagnostic criteria for ME/CFS.

Where are you? That will help advise you on where to go. We can't really diagnose you here.

 

[SOC]

We've already had this conversation here and here.

I believe the information given to you in those threads still applies. In summary -- superficially, it does not look like you have ME/CFS. However, no one can diagnose with any degree of accuracy over the internet. The best way to know for sure is to go to one of the top specialists for a proper diagnosis.

If you want to know more about the illness, read the Canadian Consensus Criteria and/or the International Consensus Criteria

Please re-read the definition of PEM I gave you in one of the earlier threads. PEM is not just fog and tiredness.

 

[Redgreen33]

Minkeygirl , lol I have no idea , no idea how it works , she kept saying I don't have the symptoms ? I've read both criterial and seems to me like I have most except for pain and the flu symptoms .

@SOC

Yes I know , I'm sorry but call me stupid but their explanation is hard for me to understand , and also I know I've been talked to on other threads but in Montreal there is no cfs or m.e specialist so you all are all I have , I'm sure in early stages you must of panicked trying to find out what was causing you to be active normal , to really tired for months? I'm not trying to get anyone upset but I'm alone and worried.

 

[A.B.]

Get your thyroid checked, start paying attention to blood sugar (night sweats; read http://en.wikipedia.org/wiki/Reactive_hypoglycemia), take a magnesium supplement to see if it improves muscle twitching (magnesium deficiency is widespread and linked to anxiety, low energy, etc.).

 

[SOC]

@SOC

Yes I know , I'm sorry but call me stupid but their explanation is hard for me to understand , and also I know I've been talked to on other threads but in Montreal there is no cfs or m.e specialist so you all are all I have , I'm sure in early stages you must of panicked trying to find out what was causing you to be active normal , to really tired for months? I'm not trying to get anyone upset but I'm alone and worried.

I wouldn't say most of us panicked in the early stages. I was certainly puzzled, and wasted a lot of time on doctors who didn't know anything about the illness.

Very, very few of us have an ME/CFS specialist nearby. There simply aren't enough of them. My daughter and I, for example, travel 2000 miles to see our specialist. That's the way it is with ME/CFS. If you want good diagnosis and treatment, you have to go where the knowledge is.

ME/CFS is a very serious illness. You do not want to rely on internet strangers to diagnosis it for you. And even if we could diagnose you, you'd still need to go to a specialist for treatment, so you might as well go to one for diagnosis from the start.

 

[Redgreen33]

@SOC
Like I've said in other threads the last thing I want is that people think I'm down playing the severity of this illness I'm not or I wouldn't be worried about it.

But just reading threads I see how much knowledge people have here not only for cfs/me but things related to it, treatments , vitamins , approaches , it's incredible , before posting here I lurked and read a lot and appreciate people's input

 

[SOC]

@SOC
Like I've said in other threads the last thing I want is that people think I'm down playing the severity of this illness I'm not or I wouldn't be worried about it.

If you are seriously worried and panicked, you need to get yourself to a specialist for a diagnosis. Nothing we non-experts can tell you will relieve that worry and panic. It might also be a good idea to talk to the psychiatrist who is treating your anxiety, hypochondria, and OCD. It sounds like they're not under good control yet and your worrying is getting on top of you rather than the other way around.

 

[vamah]

I'm thinking you don't need to be told by me to NEVER stop psych meds cold turkey, but I will say it just in case. My first symptoms were psychiatric -- severe anxiety amd then insomnia. I have been through a ton of psych meds and it can take a lot of trial and error to find one that works for you. Keep in mind that, although psych meds can control anxiety, etc ( and I would never discount how important that is) they can't "cure" anything. So even if you find a good drug you should still be looking for the cause of your symptoms.

Someone above mentioned getting thyroid tested, which is a good idea. Some infectious diseases can also cause psych symptoms, such as viruses in the herpes family. That may be something you can get a general doctor to test for.

 

[Gypsy]

@Redgreen33

Hi! I didn't have time to go through all your threads, but the fact that your symptoms got much worse after taking and then stopping Zoloft makes me think you could have had a hypersensitive adverse reaction to the medication, and possibly are suffering from SSRI discontinuation symptoms. I am certainly not a doctor and this is just a possible idea to consider with your physician. However, I have noticed that many doctors are reluctant to admit the severe reaction that these drugs can have on certain people even after a short period of time.

http://en.wikipedia.org/wiki/SSRI_discontinuation_syndrome

http://www.amednews.com/article/20090309/health/303099976/4/

I hope that you and your doctor will be able to find out what is causing these distressing symptoms and get appropriate care. ETA: There are a lot of medications and supplements that can help with the psych symptoms that you have a history of, so please try to find a good doctor to help you and not be scared off by this experience.

 

[Redgreen33]

I'm thinking you don't need to be told by me to NEVER stop psych meds cold turkey, but I will say it just in case. My first symptoms were psychiatric -- severe anxiety amd then insomnia. I have been through a ton of psych meds and it can take a lot of trial and error to find one that works for you. Keep in mind that, although psych meds can control anxiety, etc ( and I would never discount how important that is) they can't "cure" anything. So even if you find a good drug you should still be looking for the cause of your symptoms.

Someone above mentioned getting thyroid tested, which is a good idea. Some infectious diseases can also cause psych symptoms, such as viruses in the herpes family. That may be something you can get a general doctor to test for.

Yea I know but I was getting dp from taking them and was on low dose 25mg so figured I'd be fine ....guess not .
Interesting you say that about viruses , how do I go about testing those , thank you for your input

 

[Redgreen33]

@Redgreen33

Hi! I didn't have time to go through all your threads, but the fact that your symptoms got much worse after taking and then stopping Zoloft makes me think you could have had a hypersensitive adverse reaction to the medication, and possibly are suffering from SSRI discontinuation symptoms. I am certainly not a doctor and this is just a possible idea to consider with your physician. However, I have noticed that many doctors are reluctant to admit the severe reaction that these drugs can have on certain people even after a short period of time.

http://en.wikipedia.org/wiki/SSRI_discontinuation_syndrome

http://www.amednews.com/article/20090309/health/303099976/4/

I hope that you and your doctor will be able to find out what is causing these distressing symptoms and get appropriate care. ETA: There are a lot of medications and supplements that can help with the psych symptoms that you have a history of, so please try to find a good doctor to help you and not be scared off by this experience.input


Thank you for your input , you guys are so knowledgeable in many aspects

 

[Sushi]

@Redgreen33

I tend to agree with others' comments here that this does not sound like ME/CFS. PEM is not subtle and you would know whether you had it by the descriptions in the ICC and CCC. It is much more than variable degrees of tiredness and foginess.
And most all ME/CFS patients also have strong cognitive symptoms.

Why not take some time and go over the CCC and ICC diagnostic criteria, just a bit at a time. It may be overwhelming to try to digest it all at once. I'm not at all saying that you don't have something very debilitating going on, but it would be very hard, even for a doctor specializing in ME/CFS to diagnose you with it without extensive lab testing. If you have something else, that would be great, as many conditions that have similar symptoms to ME/CFS are quite treatable.

Zoloft does sound like one of the culprits. Do you have an integrative doctor in your area who could do more testing? You certainly would benefit from the right medical help, it is just that without more testing there you don't know what that help might be.

Best wishes,
Sushi

 

[vamah]

Yea I know but I was getting dp from taking them and was on low dose 25mg so figured I'd be fine ....guess not .
Interesting you say that about viruses , how do I go about testing those , thank you for your input

Ask you doctor for tests for epstein-barr, HHV6 and CMV. Many people with cfs symptoms find that they have those viruses reactivated (most people have been infected with them in childhood). I have had doctors tell me that can't happen, but shingles is a reactivation of chicken pox, which is in the same family, so that doesn't make any sense.

 

[Redgreen33]

Actually going to do that blood test next week, the Epstein Barr , what else do u think I should ask for?

 

[Redgreen33]

@Redgreen33

I tend to agree with others' comments here that this does not sound like ME/CFS. PEM is not subtle and you would know whether you had it by the descriptions in the ICC and CCC. It is much more than variable degrees of tiredness and foginess.
And most all ME/CFS patients also have strong cognitive symptoms.

Why not take some time and go over the CCC and ICC diagnostic criteria, just a bit at a time. It may be overwhelming to try to digest it all at once. I'm not at all saying that you don't have something very debilitating going on, but it would be very hard, even for a doctor specializing in ME/CFS to diagnose you with it without extensive lab testing. If you have something else, that would be great, as many conditions that have similar symptoms to ME/CFS are quite treatable.

Zoloft does sound like one of the culprits. Do you have an integrative doctor in your area who could do more testing? You certainly would benefit from the right medical help, it is just that without more testing there you don't know what that help might be.

Best wishes,
Sushi

Thank you sushi for your response as always , that's what I'm so confused about I've read over criterial over and over , I understand the description of pem but don't understand it , I mean I am tired after doing things like going to grocery store , but I mean I've been tired for 2 months so hard to tell ,

And cognitive issues I don't understand how bad they have to be to be considered ? I

 

[Sushi]

Actually going to do that blood test next week, the Epstein Barr , what else do u think I should ask for?

If you get Epstein Barr, get the full panel--about 4 values including reactivate EBV. And a whole viral panel including HHV-6.

Then if you can get Ignenex testing for Lyme and co-infections that could give some useful information. A good gut test would be good too--like the metematrix test: http://www.metametrix.com/test-menu/profiles/gastrointestinal-function/dna-stool-analysis-gi-effects.

These could rule out or confirm some things.

Best,
Sushi

 

[Sushi]

Thank you sushi for your response as always , that's what I'm so confused about I've read over criterial over and over , I understand the description of pem but don't understand it , I mean I am tired after doing things like going to grocery store , but I mean I've been tired for 2 months so hard to tell ,

And cognitive issues I don't understand how bad they have to be to be considered ? I

Being tired after going to the grocery store does not sound like PEM but some other type of fatigue. PEM is like being hit with a truck--flu-like symptoms, migraines, not being able get out of bed--these are some of the symptoms of PEM. And it usually happens the next day or even later--it is much more extreme than being tired,

Cognitive issues? Well, not remembering common words, the names of your friends. Not being able to remember a word of a sentence you just read, putting your socks in the refrigerator...stuff like that.

Sushi

 

[Redgreen33]

Oh !? My goodness , sushi I sincerely apologize , I really hope that I did not come off as someone that says , hey I'm tired I must have cfs , my tiredness is very unusual for me and scared me , I'm really not at that stage at all , but I thought maybe I fell in a category that I had very mild m.e or something , but not to that extent.
But understand that the criteria described in ICc and ccc , you have to understand that a lot of people can feel as if they fall in that category , that's why it's better for me to hear it from people who actually suffer from this horrendous disease

Is it fair to say that , i went for run with dog around the block , was tired but not hit by a truck , I can rule out m.e ?

 

[alex3619]

Is it fair to say that , i went for run with dog around the block , was tired but not hit by a truck , I can rule out m.e ?

It depends on the severity of ME. Patients who are almost recovered probably give us a good look at what mild ME is, though patients will not be initially diagnosed at that level of severity. I think mild ME does exist, but does not get diagnosed.

In mild ME exercise is indeed possible without severe PEM. In severe ME, there is no chance you could run. In mild ME, then you could handle some, but constantly increasing your exercise demands over time would probably see a substantive decline in functioning over time, until you no longer had mild ME but moderate or severe ME. It would be a relapse.

The point is, at the moment anyway though this could change in the near future, it requires a knowledgeable doctor to sort this out.