It's psychogenic, baby

[eve789]

This is my first post. My health has been declining for about a year and a half, and I am having trouble getting my doctors to take it seriously. Whenever I go in, it is for some new symptom, and all the doctor seems to see is the symptom in front of them, without (it seems to me) taking the necessary step back to view the whole pattern.

I'm posting here because my neurologist has just sent me home with the tentative diagnosis that my problems are psychogenic in origin.

Whenever I mention chronic fatigue, I get the sense they don't believe in it (as though it's the tooth fairy or an all-powerful God that you either do or don't believe in), or they say: "but the primary complaint in chronic fatigue syndrome is fatigue" so that cannot possibly explain X, Y, or Z. I have no idea whether CFS is the best diagnostic bin for me, but no one I talk to seems willing to consider it.

In brief:

A year and a half ago I traveled to Africa and was sick almost the whole time with various ailments, including malaria.

January 2011: Came back and was in bed for three weeks. Don't exactly remember what the feeling was, but was just very tired and "slow"

February/March: High fever (103 degrees) that lasted for 4 days before finally breaking, total fever lasted 6 days, total length of flu was 10 days, followed by a week of: dizziness (had a hard time walking from the bedroom to the bathroom without holding on to something), extreme exhaustion/fatigue/weakness (there is no good word for it). The kind where I have to choose between taking a shower or writing three emails, because that's all I'm going to have energy for that day. Go to the health clinic and they tell me the dizziness is probably the result of an inner ear infection. Total time in bed: 17 days. Also had sore throat. No cold/sniffles, etc.

April: A sore throat, followed by dizziness and "must lie down and not move"-ness. Total time in bed: 10 days

May: Sinus infection. The worst pain of my life. Treat with antibiotics. Better from sinus infection in 5 days. Then have 7 more day so dizziness and "fatigue". Total time in bed: 12 days

Summer: Perfect health

October: Flu-like symptoms (fever/sore throat) but no sniffles. Once I get over the flu (10 days), am dizzy & weak for 5 days. Total time in bed: 15 days

January 2012: Am traveling and suddenly become insanely sound sensitive in a loud restaurant. It was the most bizarre experience of my life (although I've been saying that a lot lately!). Go home, sleep, next day have a sore throat. Am generally weak, but not as bad as other times. Total time in bed: 7 days

February: Come back from traveling. Get a mild sore throat on a Sunday and feel a little run down, but keep working. By Monday I'm feeling much better (sore throat almost gone). Then the next day I feel dizzy and weak and like I must lie down. This feeling persists for the longest it ever has. Total time in bed: 18 days

March: Am at a restaurant. Suddenly, realize I cannot sign the check. I cannot move my hand. Over the next several days, experience right-sided numbness, inability to write properly ("forgetting" how to write certain letters of the alphabet, etc.). Then have some pretty severe aphasia, moments where I blank out (lasting up to 3 minutes) and cannot remember the name of anything in the room, or any English words, or what my name is. Return to a state of preverbal thought. Later start having headaches. MRI comes back clear. Am diagnosed with atypical migraine. Total time in bed: 7 days

May: Start feeling a little funny about a week ago. Then feel dizzy/"fatigued," in the usual way, for 3 days, then have massive pressure/headache in my head that feels like a proper migraine (the time around did not) and am somewhat sensitive to light. The next day, aphasia. Then the next day, right-sided weakness/numbness. Start having a hard time moving toes of my right foot. This improves, but I am still, today, walking with a slight limp. Mild headache throughout. Total time in bed: 8 days

Prior to this last year and a half, I'd get a cold once a year and the flu once a year. I'd get a headache *maybe* once a year (I never get headaches).

Total time in bed in last 17 months: 115 days, or 22% of my life. I've had to drop my classes and am considering taking medical leave next year. If I were in the real world, I would have been fired from my job by now, have no health insurance, and be completely screwed. I miss the days when I'd get sick the normal way: stay in bed for a day, then get up, move on with my life, get to bed early, but ultimately, keep moving.

Doctor #1: It's normal to be sick 5-6 times a year
Doctor #2: CFS is predominantly about fatigue, so it cannot explain your neuro symptoms
Neuro: There is nothing neurologically wrong with you. Your issues are primarily psychogenic in nature.

So now I am seeing a psychiatrist they recommended. HELP!

 

[Ocean]

Maybe show them the new international criteria for ME which includes lots more than just fatigue, sore throat etc.

 

[WillowJ]

said international criteria may be found here:
onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

 

[eve789]

Which criteria would you recommend?

I've only seen the Canadian criteria. I brought in a printout with the Canadian recommendations, and the general practitioner I talked to (not my normal doctor, granted) took a glance at it and shoved it back in my hands. Wouldn't read it!

I also hate the idea of diagnosing myself, and willing to consider other options, including the psychogenic one. However, if I look at the Canadian criteria, my case looks kind of textbook. Are there other alternatives I should make sure to exclude?

Also, my case is not permanent, it's relapsing-remitting. I have not read much about relapsing-remitting and don't know how common it is as compared to permanent (I do have long periods of good health, for which I am very grateful).

 

[eve789]

Thanks WillowJ & Ocean. I have not seen that criteria! Looks very official and much more trustworthy than little old me. Will definitely bring into my appointment tomorrow!

 

[WillowJ]

relapsing-remitting is known in ME and doesn't necessarily exclude you.

They should definitely check you for other conditions. Get another opinion from another neurologist, if you can. Make sure they don't have a speciality of neuropsychiatry and they do normally treat multiple sclerosis, myasthenia gravis, epilepsy, brain damage/stroke or the like.

Best not to mention ME or CFS to them unless you already have this diagnosis in your chart, just ask what's wrong. Reiterate what things are troubling you, what brought it on, what makes it worse.

I'd recommend a new primary care doc who is more open-minded. Might take a while, but they do exist. They should be willing to at least look at literature you bring them.

 

[Mark]

welcome to the forums eve. I hope you find the help you're looking for here.

I'd recommend a new primary care doc who is more open-minded. Might take a while, but they do exist. They should be willing to at least look at literature you bring them.

I'd echo that suggestion. When you're getting comments as ignorant as the ones you've quoted, you have to ask yourself whether it's worth trying to argue, convince them, explain things to them, or is it better to just walk away and find a decent doctor somewhere else? There are compassionate and open-minded doctors out there who understand that they (and medical science) don't know everything, and even if they might not have much clue how to help you, if they at least have an open mind you'll get much better care from them I think. In other words, rather than banging your head against a brick wall, sometimes it's better to just move on and look for somebody who will at least try to work with you rather than against you.

 

[nanonug]

I'm posting here because my neurologist has just sent me home with the tentative diagnosis that my problems are psychogenic in origin.

This simply means s/he has no clue what's wrong with you.

A year and a half ago I traveled to Africa and was sick almost the whole time...

Uh oh! My advice: look for an infectious disease specialist, particularly one that has experience dealing with tropical diseases. Say nothing about ME/CFS.

So now I am seeing a psychiatrist they recommended.

Tell the psychiatrist how everything started in Africa. Say nothing about ME/CFS. If s/he has two working neurons, he'll surely conclude it's not a mental disorder.

 

[Googsta]

I am confused, you say your Neuro sent you home with a psychogenic diagnosis but he'd previously diagnosed Atypical Migraine? Was that before or after you had numbness etc?

I also received an 'Atypical Migraine' diagnosis from my Neurologist. My Neuro said this is their 'waste paper bin' diagnosis when Neuro symptoms are happening but they don't know why (yes, they should just admit they don't know).
The point being, they know SOMETHING is wrong, just not what.

Personally, I would stick with him a little longer as he has already sent you for an MRI & you have new symptoms e.g numbness, limp that he would surely be interested in.
Stick to the basics with a Neuro i.e numbness, burning, pins & needles, dizziness or vertigo, tripping over things that aren't there, difficulty concentrating.

Did you have a brain AND spinal MRI?

Ask for an EEG, you mention 'blanking out' can you be more specific?
Has anyone else observed this i.e what happens during the time you are 'blanked out'?
He may also send you for Evoked Potentials testing, they use this to rule out MS.

I agree with using the ICC criteria. I posted a copy to my Neurologist a couple of weeks before my appointment. He'd previously said he didn't beleive in CFS but by the end of my last appointment he was saying 'M.E this, M.E that', so there is reason to hope. It's also a good idea to remind them of the WHO classification.

 

[Ocean]

Also, my case is not permanent, it's relapsing-remitting. I have not read much about relapsing-remitting and don't know how common it is as compared to permanent.

I had that pattern too, in the past, to some degree at least. Now I'm consistently sick. Please pace yourself and take care of yourself so hopefully you don't ever wind up where I'm at.

 

[mellster]

Hi eve,

I had a very similar pattern after being hit with FM for a little bit over a year after a viral infection when I suddenly completely exhausted to the point where I had to lie down immediately and then could work out again the next day fiercely (kickboxing) only to crash even worse the day after and at some point it was permanent for weeks/months. Also the sound sensitivity hit me at a concert which I had never experienced and I was prone to slight dizzyness. Please do take these symptoms seriously and rest aggressively, sleep as much as you can and work out gently if at all in the beginning. Do not trust your doctors if they only look at one symptom at a time and dismiss your general functional concerns. The sooner you treat this with whatever you can find on this website for treatments the faster you might recover to a point where you are at least fully functional again. Don't let it become permanent! Good luck and good health and try to find a good functional doc, they are worth quite a bit

 

[taniaaust1]

Also, my case is not permanent, it's relapsing-remitting. I have not read much about relapsing-remitting and don't know how common it is as compared to permanent (I do have long periods of good health, for which I am very grateful).

Hi.. my case for the first year was very like yours and not permanent.

I got sick and ended up in bed for about a week about 7-9 times in the first year.. doctors would just say "you have caught a virus of some kind" .. after the 8th time i caught a so called virus, I realised I probably had ME/CFS... as what virus keeps hitting every month or so.... I had a very high fever too during those bouts.

Take care.. I went from like your case.. to being bedridden full time for 9mths and then housebound for years after that. The fact that you are "crashing" so bad (actually yours sounds worst then what happened in my first year of these incidents), could mean that you too may be prone to possibly developing quite severe ME quite suddenly.
(I didnt get bouts of paralyses in body parts till my case went permanent).

I also hate the idea of diagnosing myself, and willing to consider other options, including the psychogenic one

If doctors are pushing for you to see a psychologist .. this "could" be helpful (but only if the psych is a good one who knows really about ME and dont at all push you into doing stupid things.. take care when seeing psychologists).

I say "could" be helpful cause a psychologist who sees your condition isnt a mental health issue, can tell doctors that he/she thinks your issues arent psych ones after assessing you.

Unfortunately there arent many good psychs who do really understand our condition around (thou I myself do have good one who has been a good help me esp when I had bad doctors... she keep encouraging me to find better ones!! Keep encouraging me not to give up on finding the right help).

Try finding out who the closest doctor is, who knows properly about ME/CFS and go and see him/her for at least a proper diagnoses. (see if local ME/CFS society or other ME/CFS patients can give you recommendations). Start looking for better doctors. ME/CFS specialists also can be good for finding illnesses which present much like ME/CFS but arent.

 

[SickOfSickness]

22% is a lot. Yes, go to a doc who really knows ME/CFS. Most docs are clueless. Most think it's not possible for us to be ill because our blood, thyroid, etc often shows normal for standard tests. Try not to spend lots on tests and docs, because most of us head downhill financially after once or twice searching for a cure There was a thread on seeing a specialist and spending on docs.

 

[Valentijn]

Don't say "ME" or "CFS" in front of most neurologists. If you need to say something, Post Viral Fatigue Syndrome is a lot safer.

March: Am at a restaurant. Suddenly, realize I cannot sign the check. I cannot move my hand. Over the next several days, experience right-sided numbness, inability to write properly ("forgetting" how to write certain letters of the alphabet, etc.). Then have some pretty severe aphasia, moments where I blank out (lasting up to 3 minutes) and cannot remember the name of anything in the room, or any English words, or what my name is. Return to a state of preverbal thought. Later start having headaches. MRI comes back clear. Am diagnosed with atypical migraine. Total time in bed: 7 days

I had a right-sided hemiplegic migraine that lasted three weeks, 5 years before I got ME/CFS. I seem to recall someone else here did as well. Mine started while I was sleeping though. Legs were numb first (like when sitting funny), then that went away and I realized my right side was not feeling things normally. Tests ruled out everything, including MS, and I got the migraine diagnosis. The neurologist had me take folic acid, and it went away within an hour.

 

[eve789]

First, I have to say how impressed I am by all of the comments I've read here, and how helpful I am finding them. This has been quite a traumatic experience for me, both my symptoms and the medical response, and so if this indeed is what I'm dealing, I feel a little less scared knowing that there is an educated, supportive and mobilized community.

I also had an appointment with my PCP today who was amazing and generous and wonderful and beyond kind. I think he is finally beginning to understand the scope of this. I brought a detailed, 3-page history of my symptoms, which he read carefully. He then spent an hour asking me tons of *good* questions about my entire health history. He encouraged me to take that same document to every doctor I am working with. I realize that while trying to educate doctors on ME/CFS might backfire, educating them on *me* might just sometimes work.

He said he read the international guidelines I sent him. I began to apologize and he interrupted me, saying: "Oh no, it was actually really helpful. I read that, and then I read the US understanding it, and it was really good to be able to make that comparison. A lot of the symptoms you have been experiencing appear to be consistent with [the international criteria]."

Anyway, he's referred me to a tropical disease expert and a CFS expert (who has published) and has promised to act as the big picture, synthesizer/coordinator between these different specialists. He broached the mental health component deftly, stating it would be useful inasmuch as it might be helpful for learning how to manage symptoms and my feelings about my diminished capabilities. He also said he would be supportive if I decided to take medical leave. He encouraged me to send him a message whenever I am experiencing symptoms.

He even encouraged me to get my vitamin D levels up to 45 since that level is shown to substantially help patients with MS. He found it noteworthy that I was symptom-free all summer!

Anyway, I am really optimistic about having a constructive partnership with him, and it actually makes the potentially unconstructive conversation with specialists who may know me less well a little easier to deal with.

 

[eve789]

On some of the questions above:

--My scan was only a brain MRI
--Same neuro who first said atypical migraine (actually, two different neuros said this) later said psychogenic. This is because he found the second send of symptoms bizarre (e.g., limp), and that it was noteworthy that the first episode and the second one were not more alike. Apparently migraines tend to follow pretty predictable patterns in the same person.
--Current neuro has ordered an EEG which I will try to get soon
--Yes, people have observed me blanking out. I had a lot of people hanging out with me during the first neuro episode before it was clear whether it was a stroke or tumor. (Why do you ask?)

Also, it's both "good" and really *not* good to hear that some other folks had that pattern in the past. I have read in many places that this can sometimes start less severe and become much worse, and so I think my best strategy now is to be super conservative with how I use my energy.

For example, I was feeling better today and kept telling myself it was all in my head. I went with for a half hour walk with a friend this morning, then to the doctor's appointment (by car), but walked the 15 minutes back. Now I am lying down on the couch and know I will not be able to do anything else today, or maybe even tomorrow. I am also almost at my limit on this board, at least for the next several hours. Probably would have been smarter to walk 10 minutes, or just sit outside and enjoy the sun and take a taxi both ways to the appointment, especially when I'm just recovering from something.

Also, a week before the last episode, I got an outbreak of herpes/cold sore on my lip. This sometimes happens if I am stressed or not sleeping well for whatever reason. Maybe in the future, I should use that as a leading indicator that my immune system is somewhat compromised, and that even if I *feel* great, should ratchet down my activity level and get to bed super early as a protective measure.

Lastly, I started having weird shooting pain in my legs (sometimes other parts of my body but mainly legs) starting yesterday and continuing today. First time. Got a little worse with walking. Didn't mention it to my doctor b/c I did not want to pile it on. Makes no sense, but I suppose I want it to become more established (if it will become more established) before I say anything.

 

[nanonug]

Anyway, he's referred me to a tropical disease expert and a CFS expert (who has published) and has promised to act as the big picture, synthesizer/coordinator between these different specialists.

I am very glad for you, because it appears you are in good hands! Probably the greatest challenge for many people on this site is finding a doctor that listens and cares. I'd say that half of the "battle" you have already won!

Please, do keep us posted.

 

[Googsta]

Hi Eve
your doctor does sound very promising!

I would caution you though not to give lists of symptoms to doctors/specialists, I have done this myself & it has never helped. The doctors (Neuros) immediately decided I had a psychological problem & booted me out the door. Of course that is your decision, use your judgement & instincts

I have brain lesions so I also had a spinal MRI to completely rule out MS. Lesions do not automatically equal MS, nor do no lesions.

The reason I asked whether others have witnessed your 'blank-outs' is because there are types of Epilepsy that have similar 'presentations'.
http://www.epilepsy.com/EPILEPSY/seizure_complexpartial
http://www.epilepsy.com/EPILEPSY/SEIZURE_ABSENCE
Absence seizures usually begin in early life so try not to worry, it may not be that at all.
It can be very helpful if someone films you during a 'blank-out', it really helps diagnose or rule out Epilepsy & other conditions.

It is not unusual to feel extremely vague, nauseous, confused or unable to speak with ME/CFS & POTS also.

It took a very long time to rule out MS & Epilepsy for me, it was very stressful & scary which didn't help my over all condition. But it was important to rule them out (as well as other conditions, allergies, diet etc).
All the best

 

[taniaaust1]

Your doctor sounds like he could turn out okay.. there is hope with any doctor who is interested in reading what you bring in. Try not to overwhelm him thou. Here is a list I give to new doctors at times which can be handy if you have lots of symptoms (I highlight the things I have on it) http://wwcoco.com/cfids/bernesx.html .

For example, I was feeling better today and kept telling myself it was all in my head. I went with for a half hour walk with a friend this morning, then to the doctor's appointment (by car), but walked the 15 minutes back. Now I am lying down on the couch and know I will not be able to do anything else today, or maybe even tomorrow. I am also almost at my limit on this board, at least for the next several hours. Probably would have been smarter to walk 10 minutes, or just sit outside and enjoy the sun and take a taxi both ways to the appointment, especially when I'm just recovering from something.

Also, a week before the last episode, I got an outbreak of herpes/cold sore on my lip. This sometimes happens if I am stressed or not sleeping well for whatever reason. Maybe in the future, I should use that as a leading indicator that my immune system is somewhat compromised, and that even if I *feel* great, should ratchet down my activity level and get to bed super early as a protective measure.

I suggest thou its annoying to do.. to keep an activity journal till you learn your limits and how you need to pace yourself better. Learn what you are currently usually okay to do and what you arent. An activity journal can help make sense of the consequences of certain actions faster.

It appears you are really onto things .. yes do look for your warning signs to what days you may be more under the weather and take more care those days. We all get different warning signs.. in my own case it is a slight sore throat or fever. (I recently had an outbreak of herpes too when I'd over done it).

Lastly, I started having weird shooting pain in my legs (sometimes other parts of my body but mainly legs) starting yesterday and continuing today. First time. Got a little worse with walking. Didn't mention it to my doctor b/c I did not want to pile it on. Makes no sense, but I suppose I want it to become more established (if it will become more established) before I say anything.

yes .. That's probably a good idea to not try to mention every little symptom, to a doctor who isnt very familiar with this illness as they do get overwhelmed easily. I suggest to focus on the ones which could be severe or indicate something dangers which need further checking out or symptoms you want your doctor to help treat eg if you are getting insomnia... get your doctor to work with you on treating it etc It is possible to build a doctors confidence up on helping those with this illness if one goes about things carefully. Im currently got a young doctor just out of uni, who Im trying to educate too.

Someone here said to not worry much about tests cause of money etc.. Im of the opposite opinion.. as thou most tests will show up nothing, if one is aware of the tests which are most likely to show up the various issues of our illness.. some of those can be helpful.

Test results whether from natural health fields or the medical field, can also can lead to a better idea of what things to try to help this illness, rather then just completey randomly trying to guess all the time of what could help. I have many different abnormalities showing up in my tests and that has made me aware of what supplements to be taking, what kind of diet to be on etc etc. It thou isnt helpful to do tests over and over (Ive experienced that with some doctors who are doing the wrong tests too).

 

[Shellbell]

Eve, along with the illnesses you were fighting, did your doctors give you lariam for the malaria or any fluoroquinolones (cipro, levaquin, floxin, factive, avelox or whatever new ones that are on the market now) for your other infections? These meds can cause a lot of the symptoms you are experiencing and can come on after the drug is halted for some period of time. (Also want to note that other class antibiotics can cause the same symptoms if adversely reacted to.)

I had an adverse reaction to cipro 5 years ago and all of a sudden developed neuro problems that were unexplainable by my allopathic docs. Many of them wouldn't believe me until I found 2 regular MDs who were seeing these reactions happening in their practices. After researching these side effects of these powerful drugs, they now will only prescribe them in extreme and life threatening conditions.

Check out fluoroquinolone toxicity on google and if you did take lariam, there are a few sites you might want to check out: www.lariaminfo.org and www.ivaw.org/resources/lariam are a couple of good sources. There is also a documentary on lariam side effects. If I find the name, I will post it here. These drugs are scary and cause serious long-term side effects.

Sending you healing wishes and that you find your answers!

Shellbell