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Are my problems ME/CFS related? So very very scared its all over for me

Discussion in 'General ME/CFS Discussion' started by jack blogs, Mar 6, 2015.

  1. jack blogs

    jack blogs

    After consulting with various doctors in and outside of the UK, I would absolutely respect any guidance on the subject of my current health situation. After being under the care of the NHS for almost 3 years and being no further forward with regards to understanding what I am going through, any kind of direction I could be put in by anyone on here would be greatly appreciated as I honestly am at the end of what I can bare.

    The reason I ask if its related to ME/CFS is because the only information I have been able to find that talks about anything near what I experience was in the essay below

    These are my symptoms which are now extremely severe and continue throughout all of my waking hours.

    -Waking up with feelings of intense dread and fear and the need to escape and get out of the house ASAP

    -Pacing around outside all day, constantly avoiding a situation where I have to be calm and relax, as if my brain is in overdrive and doesn't want to relax, ever! I have an unbeleivable high level of nervous energy that feels like Adrenalin, I cant enforce enough just how immense this nervous energy and dread has been at times. I may make conscious attempts to force myself to calm down and try to relax but the nervous energy and feelings of dread and fear just reinstate themselves when faced with the challenge of this.

    -Worries and memories hitting my thoughts all day, all related to my state of health and whats happening to me. It's as though I am constantly analysing how I feel in a moment and having vivid recollections as to when I either felt the same way previously or, when I felt better and making a contrast between the two and then worrying about my further deterioration of health from this point in time.
    Smells and sounds can play a part in triggering these memories and re-inforcing fear and dread.

    Its as if my brain cannot comprehend the most simplest of stressors anymore and its not adrenal, its much more than that, i have broken down in tears most days for the last 2 years.

    The trauma began 2 years ago after I was prescribed the steroid prednisolone for my adrenals - his words, by an anti-aging doctor in Belgium, a drug known to have effects on mental health However, I was not warned of any side effects and suffered a great amount of emotional trauma over a period of 7 months as this drug altered my reality making me feel like life itself wasnt real - a major stress that i suffered every second for months without knowing what was happening to me. Continuous pacing around and distress occured on this drug. After weaning myself off prednisolone and back onto Hydrocortisone (which I was doing GREAT on before) the nervous energy, fear and dread components stayed with me asif my brain had been rewired and couldnt deal with even the most minor stressors.

    My whole body and mind has changed since I suffered the trauma, I used to have minimal anxiety and certainly didnt have these deep disturbing feelings of dread and the need to escape. I was a very tired, lethargic 21 year old who didnt have the energy to be anything 'but' relaxed but I could deal with it and had a sense of wellbeing. I am still tired but my body and mind feel very different, I feel like a dog chasing its tail over and over again and it never ends.

    Where as before this happened I would spend most of my free time in my bedroom enjoying music and computer games (rather than going out because I was so lathargic). The thought of relaxing and enjoying such a thing seems impossible now. Sometimes my tolerance to stress is so weak that in that moment it could feel like the world is ending and I break down.

    My world is eerie and disturbing.

    I am 23 now and things have changed in other areas of my health since this suffering began. I feel as though I am am deteriorating and this of course reinforces more stress as I worry about these further changes. It is very hard to explain but I now feel very numb, flat or blank all day, the feelings of anxiety, dread and fear feel different although still very profound. I am also experiencing sensitivity to noise, sometimes a conversation can deeply irritate me asif someone is shouting directly into my ear.

    After 2 years of being stuck on this never ending rollercoaster ride a lot of feelings that I remember having as part of being human are gone, again, it's a bizzare scenario that I can't explain very well and I worry that things have gone too far and If I could have recovered earlier, I definitely cant now.

    Therefore I have to ask you guys in desperation for some kind of direction to understand whats actually happened and can it be helped? Ive been offered anti-depressants and beta blockers but wont take them as I know the Drs I have seen are simpy not understanding/care about how severe what I experience is, they dont seem to beleive/care that Ive been pacing around for 15 hours a day at times, they just label me as 'depressed' or you have 'anxiety'

    Sorry if this is in the wrong section - its taken me 18 months to come online and try to find answers to my problems, I was too scared to even do this before, the dread, fear and adrenaline would hit me and make me run out of the door everytime I even thought about going online and possibly finding out my life is over. Today I woke up less fearful so I am taking advantage.

    I know lots of people suffer from anxiety disorders but I've never heard of someone constantly on the move and cant stop because of unreal adrenaline responses and feelings of dread that runs 24/7 without stopping. I'm desperately looking for other cases but just can't find anyone

    Yours desperately,

    Last edited: Mar 10, 2015
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  2. Valentijn

    Valentijn Senior Member

    @jack blogs - No, that definitely doesn't sound anything at all like ME/CFS. I hope you can find a doctor who can help you. Best of luck.
    taniaaust1, Apple, AndyPandy and 4 others like this.
  3. peggy-sue


    It really does not sound at all like ME/CFS, and I'm afraid it does sound exactly like extreme anxiety.

    I get that as well, (as having ME/CFS)
    It's really, really horrible. I go round and round the kitchen table, muttering to myself, my thoughts become completely obsessive. Then I end up with all the nervous energy I had suddenlly collapsing - that's when clinical depression sets in.

    I understand the fear of SSRIs, I hate being on them, but believe me, taking them is better than carrying on like this.

    They take a bit of time to kick in, with having ME, it took 6 weeks for me, but it's likely to be shorter for you.
    zzz and SDSue like this.
  4. Snowdrop

    Snowdrop Rebel without a biscuit

    Hi @jack blogs

    You might be interested/find something useful on this thread:

    The extreme activity and pacing around I'm sure is unpleasant but it really isn't like the experience of ME.

    Here is one set of criteria for an ME/SEID diagnosis:

    Core Symptoms

    Fatigue and impairment
    There is sufficient evidence that fatigue in ME/CFS (SEID) is profound, not the result of ongoing excessive exertion, and not substantially alleviated by rest. This fatigue must be accompanied by a substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities and persist for more than 6 months. Fatigue, and particularly the impact of illness on function, should be assessed in making a diagnosis of ME/CFS (SEID).

    Post-exertional malaise (PEM)
    PEM is worsening of a patient’s symptoms and function after exposure to physical or cognitive stressors that were normally tolerated before disease onset. Subjective reports of PEM and prolonged recovery are supported by objective evidence in the scientific literature, including failure to normally reproduce exercise test results (2-day cardiopulmonary exercise test) and impaired cognitive function after exertion. There is sufficient evidence that PEM
    is a primary feature that helps distinguish ME/CFS (SEID) from other conditions.

    Unrefreshing sleep

    Despite the absence of a specific objective alteration in sleep architecture, the data are strong that the complaint of unrefreshing sleep is universal among patients with ME/CFS (SEID) when questions about sleep specifically address this issue. While polysomnography is not required to diagnose ME/CFS (SEID), its use to screen for treatable sleep disorders when indicated is appropriate. Diagnosis of a primary sleep disorder does not rule out a diagnosis of ME/CFS (SEID).

    Cognitive impairment
    Cognitive impairment in ME/CFS (SEID) includes problems with thinking or executive function exacerbated by exertion, effort, or stress or time pressure. There is sufficient evidence that slowed information processing is common in patients with ME/CFS (SEID), and a growing body of evidence shows that it may play a central role in overall neurocognitive impairment associated with the disease (memory impairments, attention deficits, and impaired psychomotor function). Such a deficit may be responsible for disability that results in loss of employment and loss of functional capacity in social environments.

    Orthostatic intolerance
    Orthostatic intolerance is a general term that implies worsening of symptoms upon assuming and maintaining upright posture. Symptoms are improved, although not necessarily abolished, by lying back down or elevating the feet. Sufficient evidence indicates a high prevalence of orthostatic intolerance conditions in ME/CFS (SEID) as measured by objective heart rate and blood pressure abnormalities and physical findings during standing, bedside orthostatic vital signs, head-up tilt testing, or by patient-reported exacerbation of orthostatic symptoms with standing in day-to-day life. These findings indicate that orthostatic is a common and clinically important finding in ME/CFS (SEID).

    Good luck
  5. poppythecat


    As your problems started when you changed from hydrocortisone to prednisolone my feeling would be that it is very possibly they are adrenal related. Have you ordered the 24 hour saliva cortisol test from Genova UK or Blue Horizon? I can identify with the inability to cope and the breaking down in tears at the slightest thing. Never underestimate the power that the adrenals (and thyroid) have. They both produce hormones that are used by every single cell in the body.

    Go to your doctor and insist on the following tests as a minimum:

    TSH, FT4, FT3 (you'll have to insist on this one), Vit D, Vit B12, iron, folate, ferritin. Then order the saliva cortisol test.

    Make sure you get a print out of the results from your doctor. You aren't interested in their idea of "normal". Your FT4 and fT3 should be in the upper third of their ranges and the vits and minerals around 50% or more.

    Don't guess whether you have high or low cortisol. Your symptoms could be either. For me they were low cortisol, which was causing massive adrenaline rushes.
    justy, oceiv and CantThink like this.
  6. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia
    Jack, my extreme anxiety, which only began after my collapse w/ ME, was reduced dramatically when I quit gluten and dairy. For a year before that, my nervous system was becoming more and more unbearable. Within 3 days things began to calm. The rest of my healing began after that. From The GAPS diet to methylation protocol. B12 deficiency can also produce neurological effects, including anxiety, ADHD type symptoms. I'm also linking another vid which might have some relevance. It concerns mast cells in the brain which create extreme states. Mast cell reactions are closely related to adrenal health. Possibly something got triggered with your traumatic episode.

    I had no evident mast cell symptoms before this illness. Once there is a traumatic event, there's the possibility of a cascade of reactions/responses from the body, taking us into vicious circles/cycles. I found using adrenal glandulars extremely helpful for a couple years. Also hypothalamus glandular. Before I started the hypothalamus, I was hyperventilating whenever I stepped into the heat, heard loud noises, any other 'stressor' (not to other people). Hours after starting the hypothalamus, this hyperventilating stopped. I continued both of these glandulars, as well as pituitary, until my adrenal health improved. Healing my adrenals came as a by-product of a long-term healing strategy. I hope you find answers soon. :hug:

    Diagnosing and Treating Vitamin B12 Deficiency‬
    ‘Brain Allergy’ and ASD - T. Theoharides, MD, PhD‬
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  7. SDSue

    SDSue Southeast

    Did somebody say "immense" and "energy" in the same sentence? Nope, doesn't sound like the ME/CFS I know, which might just be really good news! Best of luck to you.
    Sea, AndyPandy, WillowJ and 1 other person like this.
  8. liverock

    liverock Senior Member

    @jack blogs
    The feeling of dread and fear are classic symptoms of low adrenal function which you appear to have had for a long time.

    If you have been taking a dose of Prednisolone, a steroid hormone for 7 months you have probably substantially lowered the ACTH level which the HPA axis will do when taking a dose of Prednisolone.

    If you stopped taking the Prednisolone without being under a doctors supervision you probably did it too quick. Normally it can take over 12 months or more to finally come off altogether gradually. Coming off less than that, the ACTH would not respond to the need to up its level suddenly and you would be left with low cortisol, which is inadequate to mount a response to a stress situation, causing your frightening symptoms which make the situation worse.

    This is called Secondary Adrenal Insufficiency

    What you need to do is download a copy of the fact sheet in the article and take it to your doctor. Tell him you have been on Prednisone (if he doesn't already know) and stopped which has caused Secondary Adrenal Insufficiency, causing a dangerously low adrenal function level and you need to have an ACTH test done by an Endocrinologist ASAP.

    Other hormones will also be suppressed by Prednisolone therapy which can affect brain and immune function, which could account for your mental symptoms. Get tested and insist on an Endo evaluation and treatment urgently.

    What dosage of Prednisolone where you on BTW?
    Last edited: Mar 6, 2015
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  9. Vic


    @jack blogs Yes, that does sound exactly like CFS. You actually sound just like me before my crash. I'm 26 now. When I was 24 I was super energetic, pacing around all of the time, extremely agitated like I had so much uncomfortable energy that I was going to explode. Up until then, for most of my life, I had also stayed in and played a lot of computer games, even started to program them, which I got sick of. Once I got back into better shape the extreme agitation began. I had a history of always being anxious, and definitely including that period, though I never quite thought of it as dread, maybe a tinge. After I did crash I couldn't stand being inside, especially in carpeted/stuffy/chemical/wet rooms. Felt like I was suffocating. Only went inside to get food, cook, sometimes bathroom then had to run out. I actually started sleeping outside in backyards for almost all of 2014, hah.
    Last edited by a moderator: Mar 6, 2015
  10. Martial

    Martial Senior Member

    Ventura, CA

    Aside from these great and informative posts I can give you my experiences. It doesn't sound like a traditional CFS/M.E type health issue. It is however an extreme case of severe anxiety and I know I say "anxiety", however this is not the run of the mill feeling slightly anxious and worried.

    Severe cases of anxiety look exactly like you described, mixed with the sense of depersonalization you also described. I literally went through the same exact stuff and this was started a long time ago and I cured it before getting actual physical illness.

    That all aside I fully recovered using the book called "At Last a Life" by Paul David. I would suggest you check it out and apply everything that is learned there. The first thing that will give you comfort is everything you are describing he, I, and thousands of other literally had the same exact symptoms and yes, it is definitely not fun but it is treatable and you can get well!

    I could write a novel with everything about all of this but I just suggest checking out the book yourself and that is enough, literally all you could need to know to get better is in there. Now there may be an organic cause of the anxiety itself but you can still overcome the "symptoms" of anxiety while trying to figure that out.

    In that regard everything the above posts mentioned can point you in great potential directions to find that out as well. I had severe anxiety and panic attacks for around six years and was on a lot of high dose medications. After applying the right tools and overcoming my fear of anxiety and avoidance patterns I weaned off everything and got my life back. Granted I am now recovering from Lyme disease lol. I am finally getting very well now from that as well though.
  11. CantThink

    CantThink Senior Member

    England, UK
    I agree about getting the thyroid properly tested (could be autoimmune thyroid disease, but you'd expect other symptoms in addition to what you've described).

    I'd also wish to rule out Pheochromocytoma.

    It does, however, sound very much like generalised anxiety disorder (GAD).
  12. ahmo

    ahmo Senior Member

    Northcoast NSW, Australia

    OTOH, here's something someone just linked in another thread, a mainstream article re supplementing for MTHFR to overcome anxiety:
    AndyPandy likes this.
  13. Valentijn

    Valentijn Senior Member

    Sorry, that doesn't sound at all like ME/SEID either.
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  14. Sidereal

    Sidereal Senior Member

    Hi Jack, I'm sorry to hear things have been so difficult.

    What you are describing here is a not uncommon complication of treatment with prednisone and other steroids. They are well known for being able to trigger psychiatric complications in people who are predisposed. Symptoms such as anxiety, derealisation/depersonalisation, depression, mania, psychosis etc. can occur.

    Given the severity of your symptoms, I would strongly consider the antidepressant and beta blocker medication your doctors have already prescribed you. Anxiety and depression can indeed cause extremely severe symptoms. Agitated depression and mania can result in inner restlessness and constant pacing that can in extreme cases result in death due to exhaustion. I would strongly urge you to seek help from a psychiatrist. There are effective treatments available but the first step is admitting to yourself that your problem may be of this nature.
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  15. ukxmrv

    ukxmrv Senior Member


    What happened that led you to see an anti-aging doctor in Belgium?
    CantThink likes this.
  16. CantThink

    CantThink Senior Member

    England, UK
    Even if you just took the beta blocker in the short term, I think you might find it helpful while you decide on an appropriate course of action.
  17. justy

    justy Donate Advocate Demonstrate

    Just to say I had the exact same reaction to taking an SSRI antidepressant about 7 years ago. The restlessness with also huge surges of adrenaline went on for a couple fo years and took in all about 4-5 years to stop. My startle reflex was off the wall - even my husband breathing in bed would cause it on every breath he took. But I aslo had undiagnosed M.E and eventually crashed really severely and had to rest.

    For a couple of years after that I then found that the anxiety levels were ok as long as I didn't over do it and got enough rest. I then started aggressive rest therapy and this helped a lot, as did herbs from a medical herbalist amd time. I lso react very badly to prednisolone. Do you have a history of allergy?
  18. Countrygirl

    Countrygirl Senior Member

    This reminds me of an episode of......not sure what to call it........agitation?..........that lasted for a few days. Fortunately, I realised it started with taking a new sleeping tablet for the ME-associated insomnia.....zolpidene. I stopped it immediately, and the problem disappeared almost at once. It was a horrible experience as it allowed for no rest at all. I really do sympathise with what you are experiencing, Jack Blogs, and I do hope you find a remedy or its cause very soon.
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  19. A.B.

    A.B. Senior Member

    liverock may be right. Coming off cortisone too quickly is guaranteed to cause problems. Switching from one form of cortisone to another can be difficult because the potency varies. 20mg of one form can be much stronger than 20 mg of another. Mistakes can easily be made here. There are charts and tools to help one convert from one form to another:
    CantThink likes this.
  20. luludji


    At the beginning of my illness I had also a period with lasting agitation and anxiety, combined with intestinal problems. It was after I took antibiotics. It was no good place to be.
    I was very lucky that it lasted only for two months, then it was over. I am very sorry to hear you are feeling so bad.

    I definitely think agitation (and anxiety) can be a symptom of ME (maybe start a poll about it?). Nowadays I have agitation by to much stimuli. It wonders me that not all of us recognise this symptom.

    Because of my intestinal problems I ate GAPS diet (not too strickt), and I tried some mindfulness which did not really help. Drank a lot of tea. Took some supplements. And did pacing, maybe this was the most beneficial? When my intestinal problems "recovered" (more or less that is), my anxiety was subdued.

    Try to take good care of yourself, this is a physical thing. I cannot advice you on meds, I chose to do without but I don't know if that is an option for you. I hope you will find recovery soon.

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