Poll: Did you get correctly diagnosed with a mental illness before you were diagnosed with ME/CFS?

[DoubleBubble]

I manage multiple mental health conditions and have since long before the onset of my fatigue disorder. What about you?

If you were incorrectly diagnosed with a mental illness because your doctor thought your fatigue syndrome was in your head, please answer NO above.

 

[Wishful]

I've never been diagnosed with a mental health condition, before or after developing ME, and that's after several evaluations. I hope self-diagnosis for ME counts, since I haven't seen any point in getting an official diagnosis for ME (too much hassle for a worthless piece of paper).

 

[sometexan84]

Uh, I don't know what I'm supposed to do ...

I marked yes, because in the 3rd grade my psychiatrist said I had ADD

But, I did have a doc that said I should see a Psychiatrist for depression, now

 

[Davsey27]

Yes I think that mental health issues can contribute to CFS bur in most cases isnt the cause

 

[DoubleBubble]

Yes I think that mental health issues can contribute to CFS bur in most cases isnt the cause

Where have you read this? Can you share links?

I haven't come across any material on this, though I'll bet chronic stress is correlated with ME/CFS.

 

[lenora]

Where have you read this? Can you share links?

I haven't come across any material on this, though I'll bet chronic stress is correlated with ME/CFS.

I've had this since the early 1970's. I believe that both chronic stress, depression and even constant worry about others can contribute to making our symptoms worse. Perhaps the better question may be should these be considered mental health conditions, or are you talking about severe mental illness? There is a difference, as I've experienced within my own family. Anxiety (which I suffer from) can make it worse, mourning...so many of life's passages can exacerbate symptoms, just like recovery from a cold even.

Just a thought. Yours, Lenora.

 

[wabi-sabi]

so many of life's passages can exacerbate symptoms

Isn't that the truth and a a poetic way of putting it. At the moment I think I find myself sliding into anxiety and depression, but it's hard to say how much of that is related to the COVID situation and how much of that is secondary to the cognitive problems of ME/CFS.

Early on in my ME/CFS, I went to see a therapist because I was having emotional problems in dealing with the disease-although it was undiagnosed at the time. I didn't know what was happening to me; only that my doctor couldn't fix it. This was terrifying to me. After working with the therapist I felt better emotionally (wish I could find a good one now!), but of course, I still had ME/CFS. She told me that my symptoms were not a psych issue and I needed to go back to my doctor for treatment.

Whenever someone tries to psychologize my illness-looking at you Mayo!-I remember this kind woman's words and it helps me maintain my sanity. Still, I am having psych issues now secondary to ME/CFS and I would like to get treatment for them.

 

[Wishful]

But, I did have a doc that said I should see a Psychiatrist for depression, now

I think that's a common response from doctors these days: "This patient has a problem that doesn't fit the algorithm, so I should send him/her to a psychiatrist to get a prescription for antidepressants." Actually, maybe that's part of the modern medical algorithm.

 

[DoubleBubble]

I've had this since the early 1970's. I believe that both chronic stress, depression and even constant worry about others can contribute to making our symptoms worse. Perhaps the better question may be should these be considered mental health conditions, or are you talking about severe mental illness? There is a difference, as I've experienced within my own family. Anxiety (which I suffer from) can make it worse, mourning...so many of life's passages can exacerbate symptoms, just like recovery from a cold even.

Just a thought. Yours, Lenora.

Hi Lenora, I'm the OP. In the polling question, I'm referring to mental health diagnoses, meaning chronic mental health conditions. Chronic is the key word here, as opposed to severity, though chronic illness tends to be more severe but not always.

 

[KauaiWahine]

I have Chronic PTSD and was diagnosed a few years prior to my ME diagnosis (though I’d been suffering from both for MANY years before I was diagnosed with either)

 

[Rufous McKinney]

so I should send him/her to a psychiatrist to get a prescription for antidepressants

But then: they don't do that part. They just tell you : Take the SSRI.

The medical doctor- is not a psychiatrist and in my view should lose their licenses for prescribing these pills to people who are not in the care of a psychiatrist.

 

[Davsey27]

Anxiety...so there appears to be overlap with anxiety and me/cfs with sensory overload,sensitivity to sound and light.Possibly a sign of the central sensitation

 

[ljimbo423]

Anxiety...so there appears to be overlap with anxiety and me/cfs with sensory overload,sensitivity to sound and light.Possibly a sign of the central sensitation

I think the low grade neuro-inflammation that has been found by ME/CFS researcher Jarred Younger and others, might cause chronic pain, which I have. As well as anxiety, sound and light sensitivity, nausea, flu-like symptoms, malaise, fatigue and many other symptoms in ME/CFS.

I don't know what the definition of central sensitization is and maybe that also describes these symptoms. The role the mitochondria play, I'm really not sure about. It might be minor or it might be significant.

EDIT- The million dollar question is, what's causing the neuro-inflammation?

 

[lenora]

ljimbo423....hello. Central sensitization is when pain travels up and down from the brain to the spinal cord. That's what drugs like gabapentin and lyrica were/are used for. Now mine has a different reason, it's caused by damage to the cord itself and brain malformation,. But it's still referred to as "chronic pain"....another name that serves so little to so many of us. Chronic can cover so many things, chronic bad knee, chronic pain, chronic sinus, chronic complainer...chronically late;you get what I'm trying to say, I hope. There has to be some other name that will cover the seriousness of a severe pain that is with you day/night for 35+ years. Isn't there?

I've found somewhat more relief in the roller ball of lidocaine (make certain it's 4%) that should also help FM. Interestingly enough I suffered from FM for years and years. Now at this age it has finally made an exit. So have the eternally swollen glands, but then I've had new things that have appeared. Has anyone else experienced this? I'm 73, so I'm not afraid to admit my age, and don't know how many years it takes to reach this state.

Thinking out loud, as per usual. Yours, Lenora.

 

[lenora]

KauwiWahine.....Hello. No, I was never diagnosed with a mental condition prior to having my illnesses, but I had made an appt. with a psychiatrist b/c I felt it was impossible for one person to have all the strange symptoms I had. For mos. I had going from one Dr.'s office to another b/c of strange pains, nerves feeling odd, burning up and down spine and inside the spine even, etc., etc. To be fair not one Dr. I saw ever told me it was all in my head, quite the opposite. Thorough testing was done and they couldn't really explain the strange pains, sensations and other things I was experiencing that kept happening. I would awaken to find myself with my head at one end and my feet in an entirely different direction. Very odd, but I felt straight. So I decided on my own that I was a hypochondriac and should do something about it. As it turned out I almost died b/c of the condition that I had and the sudden worsening of it. I had no idea, and thought a pituitary tumor was my only problem. Little did I know that would turn out to be the least of them. One doctor, a neurologist, who had worked in a Third World Country finally recognized the symptoms and what he was seeing on the MRI. So no PTSD, although hiding in one's closet could hardly be called normal. I hope you're on the right road now....Yours, Lenora.

 

[RupertBear]

I've had this since the early 1970's. I believe that both chronic stress, depression and even constant worry about others can contribute to making our symptoms worse. Perhaps the better question may be should these be considered mental health conditions, or are you talking about severe mental illness? There is a difference, as I've experienced within my own family. Anxiety (which I suffer from) can make it worse, mourning...so many of life's passages can exacerbate symptoms, just like recovery from a cold even.

Just a thought. Yours, Lenora.

I can relate to you Lenora. I suffered from anxiety and depression for years but it wasn't addressed. I was first diagnosed in the 70s but was given no therapy, just medication. I had a traumatic childhood and believe that my body learned to live with a constant level of anxiety. Fast forward to the 80s when I had a bad case of flu and had periods afterwards when I felt terrible; weak, no energy, flu-like symptoms.
In my 50s I came out of a long stressful relationship and caught another virus. After that my symptoms worsened. I believe that the anxiety I have suffered since childhood has weakened my system and has contributed to the ME/CFS.

 

[lenora]

W

I think that's a common response from doctors these days: "This patient has a problem that doesn't fit the algorithm, so I should send him/her to a psychiatrist to get a prescription for antidepressants." Actually, maybe that's part of the modern medical algorithm.

Wishful, post: 2291301

I don't know where you live but the drill in TX has changed....overnight. Psychiatrists now have to see patients before a presciption can be given. e.g. If it's for depression, you're "sized-up" and then given the prescription and sent back to your original doctor, with the new prescription, although it's filled. Whatever you do, don't lose any of your pills, you'll be put on a blacklist. Anti-depressants are used for far more than depression, but by state law you have to see a psychologist first.

It's even worse for pain. My old neurologist was also a pain specialist. However the fentanyl crisis changed our state rules totally. As far as I'm concerned the wrong people are being punished and it was sudden, to say the least. So again, a new pscyhiatrist (and they really only deal with diagnosis and determining whether or not a drug would help the situation, plus having to see them again for perhaps once/yr., is what it now takes. You can then go to a pain specialist who can treat you. It's very involved and you end up with 3 new doctors that you didn't have before. The new breed of Pain Specialist perform implants, do other specialized surgery the others aren't licensed to do and it's up to them to also help determine if someone is an addict or not. You go through about 3 people before you ever see the specialist. I now see the need for it, as it's almost impossible to determine who's an addict and who isn't. Illegal drugs are destroying our society. The big problem that I haven't heard an answer to is this: OK, they can't get fentanyl any longer....but they're already on to something else. Why penalize those who didn't have trouble with the drug, took vacations and had been on low dosages for years? I'm sick of dealing with it all....and why does it take a doctor 4-5 visits before he then insists that you see a psychiatrist?

Out of interest: Since I've seen a psychologist for 35 years, have had the same neurologist for that period of time; it was determined that I didn't have to see the psychiatrist. Not once have I ever abused any prescription and I simply don't fit the profile for drug abuse. I've seen it up close, it's ugly and it kills your loved ones. I despise them or at least the misuse of them.

So I should get to the point: Each state has different regulations. I'm no longer on fentanyl, I'm not having any implants b/c my primary illness is helped for about 1 yr. and then pain relief stops. I'm then left with an ever greater build-up of scar tissue. I'm 73, I know what I'm up against and this is my choice. Right now I have 12 - would be 9 if left the old way. Doctors that I see on a somewhat regular basis. ME is one of the many diagnoses I have. I'm tired of it all, but I still have to play the part. My neurologist is disgusted with the changes he sees, as are my other long term doctors. But we all have to play the game. It's not a great deal of fun, trust me. I hope your state has different laws, but they're changing very quickly in so many states. Yours, Lenora.

 

[Wishful]

At present, I'm blissfully ignorant about any Canadian 'war on drugs' and any effects on prescriptions. Actually, I'm blissfully ignorant about a lot of work events. I take a look at BBC news or CBC news a couple of times a year (in case I missed WWIII starting, or alien visits), but it's always been either uninteresting or depressing. Life is much nicer without world news. Ignoring depressing news is probably good for ME.

 

[lenora]

I can relate to you Lenora. I suffered from anxiety and depression for years but it wasn't addressed. I was first diagnosed in the 70s but was given no therapy, just medication. I had a traumatic childhood and believe that my body learned to live with a constant level of anxiety. Fast forward to the 80s when I had a bad case of flu and had periods afterwards when I felt terrible; weak, no energy, flu-like symptoms.
In my 50s I came out of a long stressful relationship and caught another virus. After that my symptoms worsened. I believe that the anxiety I have suffered since childhood has weakened my system and has contributed to the ME/CFS.

Hello Rupert....I saw your answer just now. I think you're right on target and I think that's one of the reasons a one pill fits all answer for ME will never occur. I wish, but there are mutiiple causes, although I believe a virus is somehow involved.

Are you in therapy, or even considering it? If you aren't, you should, and if you can't afford it there are therapists who work on a sliding scale fee. Today things are very busy b/c of boiling over the pot called coronavirus. Still, take the first step, ask Dr.s you trust for a list of names, and go from there. It may at least help you cope with things in an easier fashion, even though it seems that you're doing a pretty good job of things. You may think you're too old, but trust me, you're probably no more than in your mid-to late 50's and that's not too old to adapt a better set of skills. Wishing you well. Yours, Lenora.

 

[RupertBear]

Hi Leonora, I have been in therapy on and off for years. At the moment I am waiting for therapy with the NHS as I live in the UK. The therapy I am waiting for is the highest level that is offered by the NHS. I have been working on myself for many years and although therapy has helped, I have found that my Buddhism books have helped me more. I have recently discovered the books by Byron Katie which are also a great help. Best wishes. Rupert.