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how to convince them it's not all in my head

Discussion in 'General ME/CFS Discussion' started by notmyself, Mar 16, 2017.

  1. notmyself

    notmyself

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    Hi everyone..as the time pass i am more and more convince i have this horrendeous disease, the fatigue is getting worse,also the muscle symptoms..the problem is no one trully belive me,sometimes even myself..


    There is still a part of me that that think is anxiety..i need something that is hapenning in CFS and not in Anxiety disorder..i make the vo2 max test..wasn't conclusive to to rule out or to point cfs either..? LOW vo2 peak (31 ) but in the same time high VEntilatory/ lactate threshold at 164 HR vo2 26..doesn t really show much impairment...MY familly think i become obsesed with having this disease and because of this my mind is creating all this symptoms..

    THey prove their point with the fact that the symptoms that cannot be created by the mind like lymph nodes,sore throat,pots ,oi..i don t have...THey say all my symtoms..fatigue,muscle weakness,dizziness,brain fog ,unrefreshing sleep can be cause by anxiety..ARE they right, how can i trully find out??..Yesterday my legs were burning,and extremelly weak..i say to myself that is acid lactic an stuff common in cfs..so i try to do some squats..i manage to do 40, rest 5 min and do another 40..is not much ,but if those feeling were cause by lactic acid would i be able to do so many squats ?? Can all this be in my mind??..i recently think i have pem also..but is it trully PEm?..or is cause by anxiety and adrenaline..I really don t want to go on meds for anxiety if my problem is completely different like cfs..I know about NK cell test..wich are 500 euros ( way to much)..wich are supposed to be decreased in CFS..isn t that suposed to make someone more succetible to infectious ?..cause i don t get any..i sure i will not have them decreased..A doctor diagnosticate me with Cfs ,but i realize that here in my country this is saw completelly like something else,he wasn't an CFS specialist..i 'm losing my mind slowly.,must be some tests out there..that can Make the diference beetween CFS and anxiety ,somato ,all in the head thing..WHAT is the most strong evidence that is ME /CFs and not anxiety?
     
    Murph likes this.
  2. Snowdrop

    Snowdrop Vexacious, thy name is PACE

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    Hi @notmyself

    If you have symptoms other than anxiety such as those in the ICC or CCC then you may have ME.
    See: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
    See: http://me-pedia.org/wiki/Canadian_Consensus_Criteria

    With these symptoms your issues would not be an anxiety disorder. There is research into ME that shows a metabolite disorder. See: http://www.openmedicinefoundation.org/the-end-mecfs-project/

    Many people here have experienced anxiety as part of this disease. The thing here is why must the anxiety be something that is all in your head? Healthy people do get anxiety--particularly performance anxiety and it can be overcome with various strategies. But people with ME have literally woken up in the night with an anxiety attack. To me this suggests that there is some underlying physiological reason--something is broken/gone wrong to create this attack not some psychological manifestation of a disturbed mind.

    This leaves open the possibility that other anxiety events are not personality traits but a response to physical anxiety.
    Social anxiety for example could be a result of being sick with ME and having difficulty keeping up with social obligations, due to fatigue and cognitive issues. That would amount to s very understandable response to a overwhelming situation -- because you are ill. Healthy people do not understand this --sometimes even when they do it is an intellectual belief that still doesn't quite really get it the way someone who is experiencing it.

    Most people are not very science literate. So that makes it difficult to talk about what is truly known about ME especially as it is not common knowledge in the medical community.

    It's a difficult situation that many of us find ourselves in. Just be patient. Don't expect too much at once and thoughtfully provide small bits of info that you think are appropriate for your situation. There is lots of info here.
    There are threads on articles and videos, research news and personal accounts. Take your time.
     
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  3. Mohawk1995

    Mohawk1995 Senior Member

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    @notmyself That is not at all uncommon. It is also most unfortunate for people like you who are suffering. Some on this site have the impression that I think "it is all in your head", but I hope my description of how I look at this and what you are experiencing shows otherwise.

    First, if you did not have a diagnosed anxiety disorder prior to the onset of these issues then it is highly unlikely that this is the root problem. Even if you did, it doesn't mean this is not physiological or that the anxiety disorder caused this to come on. Research that I have read notes no difference in the "normal" population and ME/CFS population in incidence of diagnosed anxiety disorders or any other mental health issues. Does ME/CFS increase the likelihood that you have anxiety...absolutely but completely understandable!

    Secondly if you do indeed have ME/CFS, there will be no standard test to confirm it. That is now a proven "finding". The absence of positive tests does not rule out pathology. This is especially true if the issues at play including Neuro-Inflamation (Cytokines, etc...), Metabolite issues (Tests being done at Stanford) and other biochemical/cellular issues (NK cells, CFS issues, etc..) are NOT tested.

    In the absence of those ME/CFS specific tests, the best standard is the clinical presentation. In fact, the clinical presentation is always what is truly going on with a patient (not test results). In the case of ME/CFS, the Canadian Criteria is the best tool for a clinician (or patient for that matter) to determine if they have the disease. You also do not have to meet 100% of the criteria ALL of the time to have this disease. Our son went through periods of time when he played baseball, actively worked out and was socially active, but when he was at his worst, he met every one of the Criteria. Eventually he declined and met full criteria all the time.

    Lastly, the most up to date Neuroscience is showing that we really only have control over 10% of our brain functions which are the cognitive or conscious functions. 90% of its resources are dedicated to things we cannot control. This includes oversight and regulation of the body's functions (endocrine/energy, cardiac, pulmonary, hormones, immune, temperature, perspiration, Sensation, vasodilation/contraction, digestion, excretion, chemistry/electrolytes, sleep and much more). The other very important function of the brain that is not under our control is the Neuro-immune-protective processes that are interwoven with the oversight/regulation functions. These include pain, reflexes, immune responses (Swollen lymph nodes, anaphylaxis), motor (protective shut down/weakness), Temperature (fever), Energy (Cell Danger Response), Heart Rate, Respiration, Sensation and more.

    In addition the presence of Neuro-inflamation as well as energy resource allocation to Protection results in Brain Fog and other Cognitive deficits seen in ME/CFS. These are not imaginary. They are real!

    One theory being advanced and supported is that ME/CFS is an activation of this protective process that then does not "turn back down". In other words it "comes on too strong and stays on too long" shutting down metabolism and activating neuro-inflamation which creates the cascade of biochemical, hormonal and metabolite issues we are now identifying.

    So my answer to you is, if you present with the symptom complex that you describe and all of the standard tests are basically negative, I would look to ME/CFS as the most logical cause. I am a physical therapist by trade and in my role I have always placed the clinical presentation as top priority. It is not that I do not look at test results or the potential of psychological issues impacting the person, but they have to completely line up with the presentation in order for them to be valid. Then if there are test results that correlate with presentation, the treatment provided (if based on best evidence) should create positive results. If not, then I have not discovered the root of the problem.

    I know this is a lengthy response, but there are no simple answers to the questions you are asking. I do believe the responses you are receiving are likely creating an environment in which greater levels of anxiety are bound to occur. The good news is that research is coming closer to explaining the mechanism by which this disease impacts the body. As we gain that understanding, I believe more effective treatment measures are to follow. ME/CFS is absolutely physiological and most likely neurophysiological as well as systemic. NO question of that at all!
     
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  4. notmyself

    notmyself

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    Hi, thanks for answering..the thing is that i was diagnosticated with anxiety disorder 3-4 years ago..it get much better over time,until i developed this fatigue,muscular symptoms etc...at that time when i have an obvious anxiety disorder ,i didin t have any of the symptoms that i have now..far less fatigue,nothing with the muscle,tolerate exercise with no problem..so i didint have CFs then for sure..anxiety come first for me,With all that i still find it hard to belive all this is caused by my mind but on the same time,when i check on anxiety forums ,they have fatigue,muscle weakness and brain fog aswell..Is really hard to diferentiate them..There is a site called Hummingbirds ME Association..with doctor Byron Hyde ..if i take the criteria from there ,i definatelly don t have ME..cause it wasn't sudden for me like they say,I don't have any problems with the brain( like small white matter lessions,or less white matter) no cardio anormalities either..THEY say there that 95 % of pacients with ME will fail the romberg test( unable to keep balance with the eye closed) i've done it and have no problems with it..BUT if i read on this forum i can relate with many people from here ,with similar symptoms..so i am very confused wich will only feed my anxiety..I hope they will at least develleop a 100% test biomarker for this disease..cause i'm sure many people are stuck in my stituation...
     
    Last edited: Mar 16, 2017
  5. notmyself

    notmyself

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    I find it absolutelly incredible that some people with these disease manage to keep their anxiety under control, it show great strenght and of course anxiety caused by these illness is understandble but in my case i have anxiety before having all these CFs symptoms wich makes everyone think these is my real problem..BUT i just feel it diferently these time..i don t have panic atacks ,no palpitatations,no hyperventilation..these things happens when you have a serious anxiety issues..How can anxiety make my body so weak when i don t have these features.? on the other part why i don t have any of the symptoms that cannot be caused by anxiety..like sensitivities to extreme temperatures,chemicals, food alergies,pots, enlarged lymph nodes,sore throats..questions ,questions and i don t have any answers..just one..i'm am screwed up..
     
  6. caledonia

    caledonia

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    Your start with anxiety and then gradual decline into ME/CFS sounds very similar to my case.

    The Ramsay definition at the Hummingbird site only fits a minority of people, as it requires a virus that they don't recover from.

    The Canadian Consensus Criteria and the International Consensus Criteria are definitions that fit sicker people who had either a gradual or sudden start to their disease.

    The Fukuda definition doesn't require PEM, so it may capture people who have general fatigue for other reasons.

    It may be hard to tell if you have PEM if you're pushing all the time. You may just feel PEMMed all the time. The best way to tell is to rest for several days until you get to a baseline of feeling somewhat better, then if you do something that requires overdoing it, pay attention to how you feel 2-3 days later.

    Looking back, and if I had to do it over, knowing what I know now, I would treat the anxiety first with non drug methods. This will make you more comfortable and able to deal with things better.

    Specifically, trials of GABA, 5htp and magnesium and avoiding chemicals. If you have chemical sensitivity, one of the symptoms can be anxiety. Our GABA/glutamate balance can become reversed causing anxiety. Taking GABA or theanine should be helpful. Also avoiding MSG in processed foods or foods naturally high in glutamate like tomatoes, Parmesan cheese and mushrooms. 5htp helps if there is low serotonin. Magnesium is calming and can be depleted if there is adrenal fatigue.

    I would also look at the adrenals and do a 24 hour cortisol saliva test to see if you have adrenal fatigue. That can cause anxiety and fatigue. High cortisol can also cause anxiety. There are supplements for either situation.

    You can do a Neuroscience Neuroadrenal test from integrativepsychiatry.net to test both the neurotransmitters and adrenals. They have a nurse practitioner you can consult with for ideas for supplements. She made some helpful suggestions for me for mental health.

    Finally, I would be looking at mercury toxicity as a root cause. I have a section on Cutler frequent dose chelation in my signature link below this post with more info. According to Cutler, chemical sensitivity is mercury + arsenic. I have both of those and lead. I'm chelating them out with his protocol. This is the safest, most effective protocol for chelation. Don't follow any other chelation advice unless you want to get worse. I have proven this by hard experience.

    Anyway, so if you get the anxiety under control and you still have these CFS type symptoms, especially if you're meeting the criteria for the CCC or ICC, that should convince at least you that you have ME/CFS. Your doctor already believes you because he or she gave you the diagnosis. As far as your family, I've heard people on here mention it can be helpful if they talk to your doctor.

    Unfortunately, you may or may not be able to convince family and friends as many on here can attest. A diagnostic test would, of course, be very helpful. Fortunately, there are people working on this as we speak, and it may be here sooner than we think. :)
     
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  7. Mohawk1995

    Mohawk1995 Senior Member

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    So other disorders with similar presentation include: Chronic Lyme Disease, Post-Concussive Syndrome, Mild Traumatic Brain Injury and some forms of Encephalopathy. These are all Bio-physiological/Neuro-physiological pathologies. In the case of Concussion, by definition the standard tests (Cat Scan, MRI, x-rays, Labs) come back negative. So there are definitely disorders with the same or similar symptoms that are recognized as real. In order for us truly separate these out, we do need the biomarker tests you have mentioned. But, I would still follow this rule: "Looks like a duck, quacks like a duck, walks like a duck, swims like a duck....probably a duck".

    I do not view the nervous system in segments. It is all connected and is connected to nearly every part, organ and function of our body. To me the Central Nervous System, Peripheral Nervous system, Sympathetic and Para-sympathetic (how I was taught in school to label them) are all connected and interconnected. Unfortunately when people hear the word Brain, they almost always think of Conscious or Cognitive functions when in fact that is a very small portion of the Brain/Nervous system. When people use the term "mind" that is much more related to conscious/cognitive (small part of the Brain) and not what I was referring to.

    Your thinking has now surpassed that of many physicians! the "BUT i just feel it differently" is very important! You are not having the same type of responses that you had with the anxiety disorder. Anxiety can make you feel weak, but it is more likely that your body being so weak is creating anxiety. It would be extremely rare if not impossible for the other symptoms to be caused by Anxiety alone. Your symptoms suggest ME/CFS or something similar. Also stick with the Canadian Criteria. It is the most recognized and consistently advocated by those who treat ME/CFS and those who suffer from it. What you are experiencing is highly neuro-physiological and in my opinion not something you can really control.
     
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  8. notmyself

    notmyself

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    i made the saliva test,and also scan for my adrenals..both test come back fine..so unfortunatelly is not adrenal fatigue,wich is somehow treateable..I know fixing the anxiety will make my situation more clear..but is trully hard,knowing that there is a very big probability that i have a disease wich will change everything for me..also if you had anxiety you probably know how tricky it can be..I understand that you didin't develop cfs after a viral infection??
     
  9. notmyself

    notmyself

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    . Anxiety can make you feel weak, but it is more likely that your body being so weak is creating anxiety. It would be extremely rare if not impossible for the other symptoms to be caused by Anxiety alone.


    Yes..i belive the same...but maybe we are wrong..Anxiety disorder can be a beast..i read stories of people fearing MS (one of the biggest fear for hypochondriacs) having all the symptoms..numbness ,tingling, weakness,blurred vision etc..after MRI rulling out MS their symptoms vanish..THERE are people house bound with anxiety also..so should not be underestimate either..
     
  10. Mohawk1995

    Mohawk1995 Senior Member

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    I have heard this said about depression, but I think it applies to anxiety as well:
    "People with depression (anxiety too I think) as their primary issue, fail to even get up and try. People with ME/CFS (especially early on) get up and try, but fail to be able to finish."

    All I can say is that you are definitely trying to get up and make it happen!
     
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  11. notmyself

    notmyself

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    IF
    any of you have time have a look on my symptoms corelating with canadian criteria

    1. Fatigue - have it for sure..
    2. Pem-I've try to induce PEM couple of times in the last months and it didint happen(doesn't mean i was feeling good the days after exortion, just not worse,i was the same ) I did hower on my last experiment notice a drastic change in the way i fell..much sicker..I go 4 days in the row in the gym..trying to run 1KM on the treadmill at my maximum speed . i was happy that i improved my time every each day..so it didin show any imparment in cardio respiratory system from a day to another..The best time was in the forth day 1 km in 3:20 min..i was very happy with it..the fifth day i was feeling kinda weak but i still go to the gym doing some weights and in the sixth day i made 400 push ups..i am on the second day after the push ups ..i do feel much sicker than before this experiment , but this kind of exortion can probably make sick someone without cfs also...i push way to much..leaving this on the side ..i don t really think i have pem.walking or mild exortion will not change the way i feel..still sick but not more
    3 Unrefreshed sleep- absolutelly
    4. Pain..very mild..
    5. neurological- i have muscle twitches , but not very severe..and muscle weakness feeling but probably they aren t so weak as they feel cause i test them..many times when i feel my arms very weak i go down to see if i can do any push ups...i'm always able to do 40 in one go..so they feel weak but aren't
    6. From autonimic manifestations..the only thing that i have from there is lightheadness..could very easily be cuase by anxiety
    Neuroendocrine manifestations- none
    Immune manifestation- nothing except the malaise part..if that means felling sick..i have that

    It doesn't help me much..i fit and not in the same time..
     
  12. Dechi

    Dechi Senior Member

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    @notmyself What you are doing scares me; I am afraid you are going to harm yourself more and will have to pay for it in the next months/year. I got my first viral infection in 2013 and my first and only symptom was a weakness and lactic acid feeling in the legs. I had to stop riding my bike because I could't achieve the speed I liked anymore but I kept going to the gym 4-5 times a week and training 6-7 hours. I was lifting weight and doing aerobics and didn't understand why sometimes I felt like fainting after a workout.

    Almost 2 years passed and I got a second viral infection and everything went down. I have been off work and resting for close to 2 years but I seem to be getting worse. At first I didn't have brain fog much, only with stressful situations, but now it's there every day. Other symptoms have worsened as well. Lactic acid is now in every muscle and comes very fast.

    My point is, this is an evolutive illness and you are still in the early stages. The more you rest, the less chances you have of making it worse.

    Also, I want to point out that I also have GAD and although it does worsen my symptoms, it is not the cause of it and managing my anxiety does not improve my ME. It helps me be more serene and sleep more continuous hours, which I appreciate.

    Have you considered CBT to treat your anxiety ? It doesn't have any effect on ME but it does help cope with it. I have CBT with a GAD specialized psychologist and it really is helping me deal with ME and accept the illness (not there yet but still trying). My ME is worsening while my anxiety is being treated, even my psychologist notices it. But we both agree my anxiety is better managed. This is clear proof that anxiety and ME are two seperate things. If you're really just anxious, which I doubt, you would start feeling better as your anxiety is relieved with CBT.
     
    Last edited: Mar 16, 2017
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  13. notmyself

    notmyself

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    Hi, sorry to hear that..you was a gym lover just like me..I want to ask you,if you have GAD before or after ME?.if you have it after it's definatelly caused by the illness ..isn't possible that the second viral infection triggerd your ME and not the first one? cause i think is unlikely you had ME and still was able to go for gym 4-5 days a week..
     
  14. Dechi

    Dechi Senior Member

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    @notmyself I was diagnosed with GAD just last summer, but it was found that I had it all my life, I just didn't know it.

    Yes, I was still able to go to the gym 4-5 times a week when I didn't know I was sick. I was probably very mildly affected then. i complained to doctors about my legs but nobody ever said anything constructive. Now I am moderate, maybe slowly slipping into more severe. Most I can train is 8-10 minutes per week, not every week.

    Which is why you remind me of me in the early stages. And also why I urge you to be careful and not overdo it.
     
  15. notmyself

    notmyself

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    i hope you will not get worse..maybe even better who knows..As for myself i will quit my experiments and see what will happen..My chances are 50-50..One half CFS,the other half health anxiety plus overtraining caused by continously trying to prove myself i don t have cfs..I do have hope for the second one,after all i reach my best running times and my first 10 km in my life in these state of fatigue and illness..time will tell ..good bless you
     
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  16. Dechi

    Dechi Senior Member

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    @notmyself it is good to hear that you will get yourself a break ! I am relieved. It might be that your body has undergone a high level of stress and you simply need to be in tune with yourself more and rest. Be gentle and kind to yourself, you only have one you ! ;-)

    I will be thinking of you and hoping it's not ME. Keep us informed and take good care of yourself.
     
    notmyself likes this.
  17. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    @notmyself, are you certain that your fatigue and other symptoms aren't being made worse by any supplements, herbs, or meds you are taking?

    Apologies if you've already been there, done that, it's just I think I saw you say you take ashwagandha on another thread? Sorry if I've mistaken you for someone else (I blame the brain fog) but it's just that ashwagandha made me a whole lot worse.

    I already had ME long before I tried it though. It was prescribed as a general tonic, but it definitely didn't agree with me. Once I stopped it, I went back to baseline. Phew. Had the same problem with valerian. I was told it couldn't cause daytime fatigue, so it took me months to realise that it does, in me.

    I think the other posters advice to not over do it, is good. :)
     
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  18. Alvin2

    Alvin2 Senior Member

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    I'm too gone to read this thread, but my answer is don't try. Find another doctor or specialist who knows about ME/CFS and make an appointment, let them examine you and let them inform the GP or whomever your dealing with now.
     
  19. alex3619

    alex3619 Senior Member

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    Its sometimes been the case that trying to convince BPS psychs that you do not have their diagnosed psych disorder is grounds to label the patient with even more psych disorders. Its difficult to convince them, though many regular psychiatrists can be persuaded. It all depends on the doctor or team.

    It seems to me, and I wish I knew more about this, a good strategy is to avoid such doctors once they are identified.

    It is also often the case that family and friends are hard to convince, though occasionally this does happen. Typically I read stories where patients are either supported by a given family member, or not. Its not until some obvious crisis occurs that the unconvinced people start to come around.

    The best way to sidestep the whole thing is to find some other definitive diagnosis. However in a patient with previous psychiatric conditions this may still fail to convince anyone.
     
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  20. notmyself

    notmyself

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    i guess a crisis or a big crash will remove any doubts for me and my family but till now it didin t happen..Right now maybe we are in denial,still hoping that is something else,and everything will be fine..Only time can bring answers
     

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