CFS Vs OCD please help me, I am desperate

stefanosstef

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I am devastated, if anyone can help me please do.

I had a HUGE fight with my parents because a psychiatrist diagnosed OCD because of my focus and self treatment for CFS.i don't fulfil even half the criteria and I asked him many times to justify the diagnosis, he never did.other 3 psychiatrists that have seen me diagnosed nothing psychiatric, it's probably something biological according to them.

I am reaching my psychological limits, I can't take it anymore.
 

xebex

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So frustrating for you I’m sorry younot being supported properly,

Here’s a couple of questions to ask your parents, maybe it would help them see things differently?

Even if you had OCD how does that diagnoses help your situation, what are they expecting will happen now? Do they think you will magically get better?

OCD can be crippling, what are they willing to do to help you with it? And if they aren’t willing to help with that then they are simply being ablist and refusing to help their sick son.

Another thought - ME can cause obsessive type behaviour because we are desperate to get better! I believe it can also cause OCD due to bacteria or toxins crossing the blood brain barrier - this doesn’t mean that it’s the only thing going on or that’s it’s all in your head and can just be magic’d away, obsessive behaviour is caused by the illness not the other way round. (But I also doubt you actually have true OCD you are just preoccupied with trying to get better which happens to all of us) I mean what do they want? You to just lie in bed all day and NOT try to get better?

can you find an ME specialist who will diagnose you correctly? Can you send them the criteria from officially recognized sources to prove your condition?
 

stefanosstef

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I am not sinking in desperation, even in times like this I get extremely sad but it passes after a few hours.I am proactive and don't tend to surrender.As you said, it's not that I am obsessively dealing with this ,it's the CFS that deals with me on a daily basis that causes me to react in any way I do.

No CFS speciallists in Greece sadly, but a few doctors I've been have some experience with this, they agree it's quite possible but at this point I need some proof.The criteria that differentiate depression from CFS are all for CFS.The criteria for OCD are not met in my situation but I have no issue testing this hypothesis with psychoterapy and drugs.I think they give some specific SSRI's for the OCD.My only problem with SSRIs is the possibility of permanent reduction of male hormones and sexual disorder.I think fluoxetine and fluvoxamine have less risk for that.

I will get to an appointment with my last psychiatrist with my parents.He is good but I think he doesn't want to deal with difficult cases, he is a bit old and prefers to have it easy.He had insisted that I should chase a diagnosis, a way to prove or disprove CFS.He said he will look into it, I sent him the 2-day CPET test but he never looked at it, I believe for the reason I said above.
He also said he sees nothing psychiatric and that psychotherapy doesn't seem to suit me as a personality and also it will likely not help.I would probably spend 2 years and money for nothing, his words.

I've sent some emails to various CFS organizations (that happened when we had our last big fight some months ago) and most of them responded, they gave me diagnostic criteria and criteria that differentiate CFS from psychiatric disorders.I will bring them to the appointment.

2-day CPET is expensive but it's my only solution, unless someone here knows of any other way.The other problem is that I have to find a doctor that orders this test, that knows the protocol and that the results confirm PEM and CFS and that may not be easy.
 

stefanosstef

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Most people in my situation would get seriously depressive or even suicidal.This lack of support and attack/accusations I am receiving most times it's more harsh than the disease itself.I am lucky to be resileant to negative feelings, probably because of my SERT gene mutation, longer transcription time of serotonin, kinda like I'm natuarally on an SSRI.

But there are times that I get to a point of thinking the worst and the worrying thing is that these thoughts bring me peace.It's only a couple of times per year max and only last a few hours.I would never do it but I am truly suffering.
 

Jyoti

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So sorry @stefanosstef. And so glad that you can let us know what is going on. So many of us can relate in one way or another and sometimes the worst part of it all is being surrounded by family/loved ones who doubt or even--as in your case--actively disbelieve you.

I really look forward to the day when medicine and its practitioners no longer feel the need to blame and stigmatize those with problems they cannot understand or fix.

But like @xebex, I have often come to the point of being very frustrated with notion that if the diagnosis is psychiatric then .... bugger off. Or take some drugs that don't help if you want to. It just seems to me that a healer would (should) look at the person before them and try to help them feel better. I know that sounds simplistic and naive, but all our sophistication has been at a huge cost.

@Pyrrhus posted about this https://forums.phoenixrising.me/thr...me-fibromyalgia-mus-fnd-and-long-covid.82324/ about a really interesting medical ethicist who studies and writes about this issue. You might not be in the mood for it now, but she does have some really helpful perspective on how the medical profession got to where they are in relation to 'psychosomatic' illness.

In the meantime just know that we've got your back.
 

Wishful

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When one doctor told me to "stop obsessing about it", I countered with: "If a patient came in with a spear sticking through him, would you also tell him to stop obsessing about it?" It's not obsession when there's no way to avoid thinking about ME. For severe cases, pretty much everything they do in a day hits unavoidable awareness of the limitations caused by the disease, which in turn triggers the question: "Is there anything I can do to reduce this?"

Is denial of reality really healthier than acceptance of reality and trying to improve it?
 

leokitten

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Tell the long COVID people to stop obsessing about it too. When the symptoms are present and debilitating every waking moment, are constantly increasing to levels that make basic life functions impossible and unraveling your life, and there’s no god damn treatment, then yes it’s natural to be obsessing about it. Just because this douchebag moron of a psychiatrist cannot see it with his eyes during a 1 hour appointment doesn’t mean it’s not real and not in your head.
 

Pyrrhus

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My only problem with SSRIs is the possibility of permanent reduction of male hormones and sexual disorder.
I'm not sure there is strong evidence of permanent hormonal changes from an SSRI, but if you are concerned about that, you can ask them to prescribe escitalopram, which has a low risk of side-effects, and is quickly eliminated from the body when you stop taking it. (which may also mean a withdrawal effect)

Best wishes!
 

stefanosstef

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I'm not sure there is strong evidence of permanent hormonal changes from an SSRI, but if you are concerned about that, you can ask them to prescribe escitalopram, which has a low risk of side-effects, and is quickly eliminated from the body when you stop taking it. (which may also mean a withdrawal effect)

Best wishes!
You think it's better than the other 2?I dont know if he is going to suggest an SSRI anyway.The other psychiatrist, the OCD one, suggested fluvoxamine because it's also effective for OCD.I know my personality though, I dont have OCD but I wont surrender to an illness that is ruining my life.
 

hmnr asg

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hi Stefan,
I have OCD and have had OCD since before my CFS began. It's almost impossible that all of a sudden you would develop OCD about your symptoms, but have never had any OCD symptoms before or about any other topics. Even the worst case of health-related OCD would involve some other aspect of one's life. What i mean is that OCD usually takes over your brain to a large extent and it doesnt just stop at your health issues. I have had OCD about a lot of things, including my symptoms. So their diagnosis of OCD out of the blue is malarkey.

Having said that, I have an approach to doctors who try to attribute my health issues to my OCD. I cant fight with them directly and tell them they are wrong because then they become defensive and they think im telling them how they should do their jobs. I just smile and i say: sure! you are the boss, so what is the solution you offer? When they give me all their pills and I take them and i come back and say "none of that helped" they then might soften to the idea that my symptoms could perhaps be actually physical and not just "in my head".

But I never try to take an adversarial posture towards the doctor from the beginning. I have the words "OCD" on my medical chart, which means every doctor visit is a labyrinth of assumptions that I have to carefully navigate or i will be easily dismissed by the doctor and labeled a crazy person. It's a frustrating dance that I have to do and it causes me so much stress. You are not the only one my friend! hang in there.

ps my family *all* think im just an anxious person and have made this entire thing up. So I stopped saying anything to them and i just tell them I have chronic migraines and have given up on their support (but im probably a lot older than you, so i understand that you need your parents to be on your side).
 
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leokitten

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Even the worst case of health-related OCD would involve some other aspect of one's life. What i mean is that OCD usually takes over your brain to a large extent and it doesnt just stop at your health issues.
Excellent point @hmnr asg. @stefanosstef see a douchebag moron of a psychiatrist who tried to diagnose you, he or she should be reprimanded for being so poorly trained or even worse biased and trying to make up a diagnosis to harm you.
 

stefanosstef

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@hmnr asg your situation with doctors is very hard indeed if you have OCD.You are handling it right though, what is the current situation with them?Have they accepted the physical nature of this and what are their solutions?

@leokitten He is an arrogant professor, quite a big name that all listen to but some (psychiatrists) have admitted to me that he doesnt admit mistakes.I was thinking of making him write his diagnosis officialy so that I can take that paper and go to another professor and expose his incompetence.There is a high chance that he would avoid giving the diagnosis officially.In the end I just quit him, no energy to deal with that shit, his arrogance, lack of respect and many times aggression towards me.And I needed to travel 400+ kilometers to meet him.
 

Hip

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I had a HUGE fight with my parents because a psychiatrist diagnosed OCD because of my focus and self treatment for CFS.i don't fulfil even half the criteria and I asked him many times to justify the diagnosis, he never did.
Maybe you can try to educate the professor by sending a short email. You could be as arrogant as he is!

You could say that you are sorry he knows little about ME/CFS, and would love to educate him, but unfortunately have not got enough energy to explain about this disease,

But you can briefly point out that because ME/CFS is such a horrible condition which imprisons many patients in their own homes or beds, and has terrible symptoms like pain, stress sensitivity, insomnia, etc, many patients spend a lot of time trying to find treatments which might alleviate the suffering and imprisonment, and sometimes with some success. Tell him that this search for treatments shows initiative and pro-active approach.
 

stefanosstef

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Maybe you can try to educate the professor by sending a short email. You could be as arrogant as he is!

You could say that you are sorry he knows little about ME/CFS, and would love to educate him, but unfortunately have not got enough energy to explain about this disease,

But you can briefly point out that because ME/CFS is such a horrible condition which imprisons many patients in their own homes or beds, and has terrible symptoms like pain, stress sensitivity, insomnia, etc, many patients spend a lot of time trying to find treatments which might alleviate the suffering and imprisonment, and sometimes with some success. Tell him that this search for treatments shows initiative and pro-active approach.
He knows about cfs, actually i was impressed with his pharmacology knowledge, far more than all the other doctors (he is a pharmacology expert).Yet he downplayed the severity of cfs, like it's a mild dysfunction.I won't bother contacting him, there is zero chance he gets any input.He also commented on Prusty's study, said it's a perfect example of scientific garbage.He will be proven wrong.
 

stefanosstef

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Sounds like he has not heard of the ME/CFS scale of: very severe, severe, moderate, mild.
He was the most arrogant and knowledgable doctor I've met.But arrogance is a big fault that can lead to bad medical decisions.He got one thing right though, he agreed that neuroinflammation is almost certain according to my symptoms, the bad thing is that the Neurontin he gave me did absolutely nothing, yet he didnt admit that it's not working claiming that it needs more than 3 months to work.

What works for me is pramipexole and the occasional benzo that gives me a whole day of being 100% normal.Whatever happens messes my sleep, probably an overactive sympathetic and etizolam (not a benzo but a thienodiazepine) fixes it.Too bad it's not a long term plan.
 

leokitten

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A psychiatrist who doesn’t understand the basic premise that OCD encompasses obsessive-compulsive behavior that is pervasive and affects multiple aspects of one’s life, not just obsessing about one aspect, is not knowledgeable, or even worse, knows the truth and has dangerous motives.
 
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I had a HUGE fight with my parents because a psychiatrist diagnosed OCD because of my focus and self treatment for CFS.i
If you are a minor, its my understanding SSRI's were never tested on children....

i just tell them I have chronic migraines and have given up on their support
It is interesting that certain physical conditions are generally accepted with out much effort by the masses.

I have a migraine...thats a good one! They come on at a moment's notice, with no external symptoms other than grimacing and cringing and moaning.