arrow16 Comments
  1. Gregory G Cutler DVM
    Feb 03 - 4:58 pm

    What a trooper! So glad you can still do these things and live to write the blogs.

    Thanks,

    Greg

    • Corinne
      Feb 05 - 6:26 am

      lol…alive? barely :)

  2. MarthaLauren
    Feb 03 - 7:08 pm

    Hi Corinne,

    I am a long time observer of this forum. I never comment because I am mostly concerned with absorbing this complex body of information, rather than adding my own confusion into the mix. However…after reading your latest report (I have read most of your previous installments) I felt compelled – this one time – to comment.

    I have just finished reading a book that I think you might (possibly) find interesting – given your recent findings regarding your spine. It is Dr. Raymond Perrin’s book, The Perrin Technique. (I know it has been mentioned, at least briefly, on this site before…somewhere.)

    I’ll say up front that the book is not super well written (or, at least, not designed primarily for the layman). Also, the author makes the common mistake (what I believe to be a mistake, anyway) of assuming that his findings apply to all persons with CFS/ME. But if you can forgive those few flaws, the book provides a very interesting and hopeful perspective for (at least) the subset of patients (including myself) who have a significant spinal component to their illness.

    In summary, his belief is that problems which originate in the spine – i.e. postural strain, genetic malformations, injury, and lesions – and particularly problems in the thoracic spine (below the neck, but above the lumbar segments), can cause system wide dysfunction. (According to Dr. Perrin it is in the thoracic spine where your autonomic nervous system all comes together – sort of like its motherboard.)

    His theory is based on his observation that these spinal issues cause sympathetic nervous system up-regulation directly; a problem which is only further compounded by the reduced blood flow and slowed lymphatic drainage (another reason I thought of the book when reading your report), and the consequent build-up of toxins (in the brain, specifically). All of which, when combined, can create multi-dimensional dysfunction.

    Anyway, if you (or anyone else out there) have any suspicion that your spinal issues may be more central to your condition, rather than just peripheral, you might want to check out the book. It’s the only one that I am aware of that places these (structural) issues in the center of the discussion, rather than just the sidebar (I’d love to know if anyone knows of other books or theories that have the same focus).

    My own illness was originally triggered by an infection (most likely Epstein-Barr), I have suffered from the full spectrum of symptoms associated with CFS ever since, and, over those (13) years, I have assembled a comprehensive treatment plan for myself to address what feels like every (dys)function within my body. But it wasn’t until I started to concentrate a significant amount of my efforts on rehabilitating my spine and the surrounding tissues that I began to see significant and lasting changes system wide.

    Dr. Perrin is an osteopath, and so depends on a specific set of tools to bring better function back to his patients’ spines. But I have had a significant amount of luck using a different (but related) set of therapies – self applied trigger point therapy, massage, epsom salt baths, yoga, targeted stretching, etc. – to accomplish the same basic thing. I guess that is just to say, if you see any potential in his approach, don’t let his distance (he is in the UK) or the highly specific nature of his suggested therapies dissuade you. As with many matters of health, I suspect there are multiple ways to address the same basic underlying problem.

    In any case, best of luck with your continued search. Thank you for sharing your (mis)adventures with all of us! Martha.

    • Sharon
      Feb 08 - 3:36 pm

      Martha
      Thank you for you comment. You have helped me more than you know with the information about Dr. Perrin and the thoracic spine being the “motherboard”. I am too sick to comment more and again-many thanks!

      • MarthaLauren
        Feb 13 - 6:58 pm

        Hi Sharon,

        Thanks so much for your reply. I especially appreciate it since it sounds like you are, basically, too sick to even type (I’ve certainly been there).

        I’m also glad to know that my comments were actually of use to someone!

        As I said in my first post, I never comment on these forums. Mostly because I, myself, have suffered greatly from information overload, so I can never figure out how to reconcile that side of the experience (which makes me never want to utter another word again, on any subject!) with the opposite pull to contribute my own findings back into the “pot”. I guess the compromise, in my mind, is to try to only offer my thoughts when they seem to most directly apply (but even that is hard to determine!).

        In this specific case, it felt worth commenting because it took me ages (and by that I mean way too many years) to recognize the role that (the state of) my physical spine was playing in the perpetuation of my condition, but once I understood the possibility, it was ‘painfully’ obvious. And it took another long spell (years) to figure out how to address that situation without just making things worse: at my very worst, my nervous system was so hyper-sensitive to stimulus that even light stretching and massage was unbearable.

        And, it wasn’t until reading Dr. Perrin’s book that I finally had a solid explanation for how problems in the thoracic spine (which is the section of my back that I have always considered the “epicenter” of my pain) can cause/contribute to such far-reaching symptoms. After reading that book, I really tightened up my focus, and saw immediate and lasting improvement. (Even though I’d instinctually known the importance of rehabilitating my spine for some time, having official recognition of this possibility still helped a lot.)

        Anyway, I’m glad that you see the potential of a solution for yourself somewhere in there too. If you have any specific interest in knowing my own self-care routine that I eventually developed to loosen my spinal (and surrounding) muscles – which gradually eliminated most of my pain, allowed my entire nervous system to calm down, and re-regulated my blood flow to my brain (amongst other important things!) – just let me know. I would do my best to type it up succinctly for you.

        In any case, I wish you the best of luck. And, I hope you get to feeling well again very soon. Martha.

  3. Julie Mandli
    Feb 04 - 8:25 am

    Dear Corinne,

    You are my hero!!!!!!!!! I have been following your blogs for awhile now. I am a recovered cfs
    person.
    You are a true testament to the human spirit of never giving up hope for a better day. Keep your quest and I pray that you find the much deserved relief and improved quality of life.

    Thank you for sharing your story,
    Julie

    • Corinne
      Feb 05 - 6:25 am

      thank you so much…hero? what a compliment. I amaze myself sometime, but if you read the quote at the beginning of the blog, what lies within is often remarkable…unbelievable.

      Thank you for your interest and your support,

      Corinne

  4. Betsy
    Feb 04 - 8:46 am

    Hi Corinne,

    Geeze what you have been through. I sure hope by now you have even more answers and have gotten some relief. Hang in there.

    Betsy

  5. Carole
    Feb 04 - 10:15 am

    I would like to know if insurance covered any or some of these many tests? The average pt with or without insurance could not afford or endure this many tests.Didn’t you have 3 MRI from Dr. Peterson?

    I wonder if these in them self may contribute to you never getting better.-or making you worse.
    I know they would kill me!!!!!!.

    I admire your spirit, but know I could not take the stress of all this.

    Hope your next blog shows improvement.

    • Corinne
      Feb 05 - 6:19 am

      yes, medicare covers mris and other tests and docs appt…but not travel!

      it’s amazing what you can do even if you think it’s impossible. I do pay a price but at this point I truly don’t have a choice. I can’t sit and do nothing with something that could cause paralysis…however, doing nothing may end up the only option.

      Thank you for your interest and encouragement,
      Corinne

      • Corinne
        Feb 05 - 6:23 am

        yes, medicare pays for tests including mri’s and doc visits ( co pay is 20%), but not for travel!!!

        Thanks for your encouragement and interest,

        Corinne

  6. Iquitos
    Feb 04 - 10:34 am

    Are these tests something that would reveal dorsal root ganglionitis?

  7. Corinne
    Feb 05 - 6:21 am

    dont know ?

  8. Carole
    Feb 05 - 7:36 pm

    Corrine- Reread your story again. So interesting that no one can give anyone a definitive answer. I hate to say this-but I have given up on finding a Dr. in SE USA.One interesting thing about the other poster was saying it may come or start in the Spine. Mine started with Epstein Barr and CMV. I had 10 -12 years of remission of sorts-always exercising. I have Spinal Stenosis and shoulder neck issues with dizziness. I am seeing a Chiro and an Osteopath.
    Also do stretching exercises every am in bed and at night. The Epley methods of turning the head to a 45 degree angle when I have dizziness has really helped me. You can do it yourself..You can fidn them on the internet and they do have P Therapist for it. However I can do it at the beginning of my dizzy spells and stop them.
    Basically you turn your head as far as it with go to a 45 degree angle and try to hold starting with one minute on each side. This has helped me tremendously with dizziness.I have increase to 3 min now. sitting up first then laying down for the turns.

    I plan to get the Perrin book. . Also meant to mention I had Steroid inj for the Stenosis,Epidurals
    took me months to get over them and really set me back.
    Th exercises that the Physical therapist gave me to do on the floor or in bed has saved my back .
    I actually do them in the middle of the night if I can’t go back to sleep. It increases the blood flow.
    I hope you can do some exercises anything to keep your circulation going. I also was an athlete and I am sure any exercise will help in the long run.

    My best to you and I admire your deligence. I just can’t do the travel anymore. Carole

  9. Darlene
    Feb 07 - 1:05 pm

    Corinne, I am enjoying your blog series very much. You are really a trooper! Thanks for keeping things upbeat, it can get so discouraging sometimes and you are a great example of positive thinking.

    Best to you and yours,
    Darlene

  10. Tanya Selth
    Feb 10 - 2:18 am

    Hi Corrine,

    I always feel a bit envious when I read your posts… wishing I could get the same kind of support. You are soo lucky having supportive doctors you can get to. I (I so could do with regular saline IVs and being in a wheelchair just to conserve energy so I didnt get worst). I recently had to be ambulanced to hospital for a couple of bags of saline IV which I recieved only after I collapsed badly and wasnt going to come good, my kidneys were being affected and not working well (another complication of this darn disease).

    I find the same thing.. that things one KNOWS is due to the ME.. doctors try to put them down to a person going and develping different things. Its like they dont want to believe just how many problems this illness can cause!

    Not long ago my eye disks were found to be bulging (an issue which can cause blindness)… on follow up.. the issue had vanished. Im sure it was something to do with the ME and the severe bouts of orthostatic hypertension I get due to it but doctors wouldnt consider that and said the scan pictures of the swelling I’d been sent to a specialist for must of been misleading.

    Anyway. I hope things improve for you soon.

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