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PLMD RLS FATIGUE LYME CRAMPING FIBRO CFS

Discussion in 'Support Subforum' started by Lost, Sep 14, 2019.

  1. Lost

    Lost New Member

    So to introduce myself or give a bit of background:

    Life presently is hell with short spells of brief heaven.

    Childhood was hard, a mix of ailments, bullying, strict parenting and a sensitive nature.​

    Things that stand out from earlier years:

    Around 5/6, I hoped over a pillar, landed funny and all of a sudden, could not walk. Can't remember the diagnosis but my right leg would move when i tried to move my left leg and vice versa.Remedy was lying in a hospital bed with weights hanging from my feet via a pulley for 3 months

    Around 8, I became know as the heaviest kid in class, from then on, I was referred to from friends as heifer (basically, fat as a cow) and later my legs became know as sequoia tree trunks

    Around 12/13, while on a student exchange program in France, I witnessed a younger boy cycle under a moving truck :(

    Around 14, I jumped during basketball at school, landed funny and tore a ligament in my lower back. Movement between hip to torso extremely painfull yet PE teacher said I was just lasy and parents said I was too young to have back pain. I had been rowing for a year prior to this and stopped. Eventually, 3 months later, my parents finally brought me to a doctor, got anti-inflammatory meds and felt better in 1 month although flares with any lifting would occur for the next 10 years

    Throughout school, teachers would scold for my apparently obvious questions during class, eluding to my stupidity, and generate laughter from the rest of the class

    From about 8 on, going to sleep and never waking up became a fantasy

    Father extremely strict, unapproving of school performance, dislike of friends, forced to stay in room to 'study' for 3hrs after school every day.

    Mother loving but with little attention to food preferences and constantly offering foods I didn't like or found revolting

    Mother and father - constantly fighting, mother asking me if I would live with her or him if separated, it never happened, still together, but would have been her due to his strict terrifying nature

    Around 13, began smoking pot and vowed to smoke it forever, fun was had throughout teenage and college years experimenting with other drugs, LSD, Speed, Coke, Alcohol, MDMA, Magic Mushrooms. These are some of my best memories but stopped all but pot and alcohol after college,and now its just pot as can't handle alcohol due to exacerbation of symptoms if drinking alcohol or if stopping pot (even after 8 months off it)

    During college, a comment that stood out was that I am an intellectual genius who is socially dumb

    Fell in love with the only girlfriend I ever had at age 21, paranoia got hold and thought she might be cheating, then in a text said I didn't know what I would do without her and she took it to mean I was suicidal and broke it off. Thats not what I meant although I have had suicidal idealizations since I was 8. Still miss her now at 38.
    Later Years

    Social interactions very difficult, very anxious, especially in work

    Social weekends were basically getting drunk to the point on blackout so that I could talk to others

    Work became a place of - do I really have to do this for the rest of my life - accompanied by a sinking feeling of depression - and always a sense of I'm so tired, can't wait until next holiday so that I can sleep in - I was a man with excessive sleep requirements and would often, as in most days, fall asleep in a friends house or at home on the couch or on the bus home

    Then at 25, bit of background - a constantly belittling older brother who had always made sure to point out my shear stupidity and ridiculousness, on my birthday was out and I left to go home early. When he returned with a friend of mine, came up to my room to wake me up to get some pot and have a smoke. I was half awake but trying to stay asleep so unresponsive until he pulled the bedclothes off at which point I jumped out of bed and attacked him with full rage of anger built up over the years of being bullied, he pepper sprayed me but it had little effect until my father came in and calmed things down. I secretly blamed him and put my attack down to some REM waking rage stuff I found on the internet - of course I am fully aware that I was not asleep so it was an excuse and I felt extremely guilty for my actions. There are many other memories of my brother shaming me in the presence of mine and his friends for being stupid - things like forgetting keys or leaving a bag open when camping so batteries fell out and made stereo useless - so quiet an unforgiving person, a bit like my father

    After this, it became apparent that I had difficulty sleeping, especially with other people in the room

    At age 27 began and fell in love with kayaking. A sense of guilt developed as my brother would remind me how all I wanted to do was kayak and therefore not spend time with him. Tight forearms had been noticed but not much heed taken

    Age 28, on way back from a skiing trip, brother wanted me to call in for a few drinks but I was too tired and wanted to have a good sleep to go kayaking next day. I called in, but not for a drink, and he would not talk to me - I guess I was selfish according to himself. While driving home from airport, my forearms got very sore. Over next few weeks, it became unbearable so went to doctor. Got anti-inflamatories that didn't work - this is the start of my current hellish life, a life where every night there is a hope that I will pass in the night and where every morning there is disappointment that I am still alive. The forearm pain migrated to elbows, wrists, shoulders, neck, back, knees with mild fatigue and a new vow was made, that if in 7 years (a point at which every cell in my body would be new from that point), if I still had this pain, it would be time to finally end this hell. I had all sorts of treatments and scans and nothing ever showed up. And while I had been considering a career change to a kayak instructor, Kayaking was no longer possible. Somehow I managed to stay in work, although much time was spent searching for answers/cures.

    Around 31 I discovered TMS and read all the books and followed a number of programs. I went back kayaking and found that pain would often subside while kayaking and return after. I began weight lifting despite pain, although there was no pain while lifting, but generally more the day after. Energy levels were ok.

    Around 33, I met a girl, a very nice girl and all symptoms were gone, boundless energy and no pain until a week later she turned me down. I had a night out with friends and despite being quiet hungover the following day and having kayaked for 4hrs straight at high intensity the day before, decided to start a raw vegan diet to improve energy as I had been feeling more and more tired before first meeting that girl. A week later, pain vanished and heavy fatigue began. Stuck to diet and 6 weeks later fatigue diminished but recovery was still much slower than before. And the pain returned. 6 months later, after a reunion with friends form teenage years, feeling out of place and anxious, fatigue set in and pain vanished. Kayaking was once more not possible due to fatigue.

    Around 34 began seeing a TMS therapist to help through skype and while I did start kayaking again, there were many ups and downs and didn't not have confidence or focus to participate with whitewater activities but by 36 was cycling and kayaking regulary and performing well despite the overwhleming fatigue. Until the overwhleming fatigue turned into frequent flu-like episodes every 3-4weeks and all sport again came to a halt. Around this time I was changing jobs which I found extremely stressfull due to anxiety and fatigue and brainfog

    After 2 years of TMS therapy, it wasn't helping so I stopped and decided to look deeper into medical possibilities. Went for a sleep study 1 year ago and discovered I have severe movements during sleep. RLS or PLMD whichever it is, they called it RLS. Got meds that helped but gave me weird sensation in legs during the day, then tried optiates but they made me even more exhausted, just with less of a care about it. Before the sleep study, I had tired a carnoivore all meet diet for 4 months which greatly helped anxiety but had no energy to kayak and do much activity.

    Since then I started adhd medication for focus in work and got tested for Lyme which came back positive so began herbal treatment and ldn for immune system and zopiclone sedative for sleeping when away. This was great at first in that I could now go kayaking again, although having to manage awfull cramps during kayaing - my hands would basically lock onto the paddle and if I removed my hand, I woudn't be able to open it again to grab the paddle - scary in a whitewater environment.

    Anyway, the cramps are progresing and what I haven't mentioned is that I have had flu-like pain running through my legs and hands for past year. These past two weeks things are getting even worse and now have exhausting fatigue, unrefreshing sleep, muscles in my legs and arms are vibrating with micro involuntary movements and my hands and feet arms and legs feel as they are about to cramp up at any minute.

    People say those who take their own lives are selfish, I think that those who expect others to endure these aliments so that they don't have to deal with such are selfish. Of course, the guilt prevents me from acting, the infrequent days in a kayak motivate me to keep going, and with the brief nightly relief from a little toke accompanied from the anti-depressant effects of concerta and ldn, I am still here although the effectiveness of said reliefs are diminishing, I am losing faith in prevailing.
    And the questions to the group,
    Lyme disease - is it real? Or should my immune system be capable if I were not so divided within my mind?
    RLS / PLMD - is it possible that even though I am not conscious while this happens, that my subconscious could be causing my muscles to twitch while asleep and prevent me from getting deep sleep
    I am lost, are my diagnosis basically BS and reinforcing my clear TMS or are my aliments real and the symptoms exacerbated by TMS
    Is celiac disease real? My mother has it, diagnosed by biopsy. I get brainfog if eating grains
    Once every few years, I wake up refreshed, as in I have had a good sleep, everything changes - I like work, I am positive, I have little pain and greatly reduced fatigue. Is this a sign that I have had a brief relief from emotional distress due to whatever happened that day or is this a suggestion that yes, the PLMD is real and perhaps the cause of all my ails?
    I am at a point where decisions are to be made, am I to keep trying new meds to try and find some relief or is it time to take on the challenge and quit all meds slowly and focus my efforts not on relief but on feeling the torture of life
    Anything stand out reading the above that I may be missing, anyone overcome extreme fatigue, restless legs or periodic limb movement disorder while asleep?
    Success stories seem to be plentiful for pain but not for sleep PLMD and fatigue. The lack of success I see challenges my belief in TMS being true for me although at the same time, I clearly have TMS tendencies, perhaps I have both






     
  2. JanAtheCPA

    JanAtheCPA Beloved Grand Eagle

    Wow @Lost, that is a hell of a backstory. I felt great sadness reading about your father and even more so about your brother. My sister is not very popular in our family, because she has a need to put people down, but at least I always got along well with my brothers - however, it may be easier for opposite-gender siblings to get along in some cases, and it certainly sounds like your brother is taking after your father, whereas you have tried to take another path.

    Anyway, there is a LOT to unpack there, although you've done a good job laying it out. Just for your own historical reference, you might consider copying this post and putting it into your "My Story" on your profile page, because it will be useful to go back and look at it later.

    You've been working with a therapist, and you said you did a number of programs - since that was six years ago, did that include our Structured Educational Program? (I myself did it in 2011). Even if you did it then, you might consider doing it again. One thing that you will discover if you really read the Success Stories is that most people don't have success until they really give in and do the deep emotional work. @Nicole J. Sachs LCSW has a book, videos, podcast, and a paid program (which costs about the same as one or two sessions with a therapist) which are totally based on the TMS approach (she actually worked with Dr. Sarno in his programs after she recovered from her own TMS under his care). However, Nicole concentrates on journaling, and how to do so with real self-honesty. The thing is, your brain is extremely committed to tricking you into NOT doing the work honestly, and it is very very skilled at this trickery, so that you'll never realize what's going on. So that's my suggestion: check out Nicole's offerings (her podcast is awesome - start with the first one) and either do the SEP, or do her program. But you have to do it 100%. No ducking, no weaving, no letting your brain skip stuff.

    These are really great questions, and I will tell you what I think, but I have to warn you: I am a tax accountant, not any kind of health practitioner, and I have a very very strong belief in the TMS mechanism and how and why it operates - so you have to consider my answers the opinion of someone who has had TMS mostly under control since 2011, although I still have my struggles. Okay?

    Most of here think that so-called "chronic Lyme" is bullshit. It's just another attempt by dubious practitioners to fix something that cannot be fixed with drugs and procedures. IMHO, the application of massive long-term doses of antibiotics should be considered malpractice. [/QUOTE]
    Of course! The whole neuro profession knows that our subconscious minds are extremely active during sleep.
    The diagnoses could easily be BS, if there is no clear and acceptable path offered for recovery. This is the whole basis of the belief in the TMS community that fibro and CFS are both TMS. The symptoms are real, it's only the diagnoses which are wrong.
    Yes, it is real, although very rare in the population. You should be tested for that. But get tested by a respectable and traditional medical institution, do not make the mistake of going to a clinic that will give you a diagnosis of "sensitivity" because, again, we here believe that most, if not all, food "sensitivities" are TMS.
    Look, don't let the medical profession complicate things. As far as I'm concerned, PLMD and RLS are just acronyms for forms of insomnia, designed to sound professional enough that doctors can feel like they are doing something by putting a name to them. You should not even dignify these by calling them diagnoses. They are just words strung together that describe the symptom. And restless sleep, whether it's outright insomnia, or poor sleep with physical movements, is a well-known and extremely common symptom of TMS. Don't overthink it!
    We always want to make sure that people have been checked out, that treatment options are non-existent or have uncertain outcomes (such as surgery for chronic pain) and that at this point, it can't hurt to make a brain shift and go for the TMS diagnosis. It sounds like you've done all that.
    Yes, all of those symptoms are in amongst our Success Stories - sometimes in a list of multiple symptoms. One problem with CFS and fibromyalgia is that these two conditions are so extreme, it is incredibly difficult for the sufferers to believe that they could possibly be overcome by engaging in emotional work and changing how they think about their symptoms. Also, the childhood backgrounds of people with these conditions tend to be pretty abusive, and all those years of abuse and the absence of the love and nurturing that all children have the right to expect, take a huge toll on mental health, and are much harder to overcome than the normal childhood issues that most of us experience. I am going to guess that the TMS work you did six years ago was a good start - but that you are going to have to work harder, and work deeper than you did back then. Above all, I think that you are going to have to learn to love yourself. But I do believe that it can all be done.

    One thing that it's important to understand is that TMS is not a "disease" as such. It is actually a normal human brain mechanism, designed to protect us in the early primitive world, when life was short, and the dangers were few and very obvious. The TMS mechanism doesn't work well in today's modern world where we live about three times as long, the physical dangers (for most of us) are few, but the anxieties and stresses are increasingly overwhelming. Our primitive brains don't know the difference between someone who cuts us off in traffic and a sabre-tooth tiger, and we end up in "flight/fight/freeze" mode too much and for too many years. Add modern technology and the anxieties of growing up and planning for the future that modern humans have to deal with, and you've got the perfect recipe for the TMS mechanism on overdrive. Add in childhood abuse (of whatever type or amount) and it's no wonder your poor body is protesting.

    You may need to forgive yourself before you can move forward. And I'll leave you with one of my core beliefs, which is that in order to recover, you need to love yourself enough to know, in your heart, that you deserve to heal. You can do it.

    ~Jan
     
    Rainstorm B and Lost like this.
  3. Lost

    Lost New Member

    Thanks Jan for your detailed response and reassurance, I will take a good look at Nicole's work
     

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