Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Can you identify what this skin condition is?

Discussion in 'Skeleton, Skin, Muscles, Hair, Teeth, and Nails' started by Solo, Oct 20, 2012.

  1. triffid113

    triffid113 Day of the Square Peg

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    Michigan
    I get those marks also but only when inflammed/retaining water, which as I get older is most of the time. I first realized I retain water all over when I tried DMSO on a significant portion of my body (for PMS) and found it took down swelling ALL OVER (I mean that there WAS swelling to take down ALL OVER). I am allergic to all sorts of things and allergies will make me retain water and frankly make me drink tons to wash it out of my system. But I also wonder if water retention might have something to do with not getting enough magnesium, since the urea cycle requires magnesium. I don't know.
     
    Solo likes this.
  2. Solo

    Solo

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    Hi, triffid! Thanks for your reply.

    Just so I'm clear. When you took DMSO, you found relief from the skin markings and water retention? I had wondered for some time if this was some kind of hyper-hydration or water retention.

    Have you tried magnesium for this or other related symptoms? Did it help?
     
  3. triffid113

    triffid113 Day of the Square Peg

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    Solo, I will have to try DMSO again and tell you. It definitely takes down swelling and in so doing eliminates tissue hypoxia (swelling cuts off blood flow) and thus lowers or eliminates pain.

    I have to tell you I am having serious thoughts about water retention on account of because my father is in kidney dialysis (and not doing well). It is making me think alot about my own water retention issues. I have 3 genetic defects to do with creating and using BH4 (tetrahydrobiopterin) such that my levels will be low (I have not actually tested my biopterin levels, but I ordered the test for my father from Metametrix). To make urea / get rid of ammonia, the body requires BH4, magnesium, and thyroxin, among other things (these being the 3 things you can change). BH4 is available OTC (I get it from www.heartfixer.com) or as a prescription called kuvan, magnesium can be taken as a supplement or rubbed in as an oil (heartfixer gave me magnesium oil for my blood pressure), and thryoid levels can be improved with sufficient methylcobalamin, iodine, selenium, zinc, iron, tyrosine and perhaps a few other things (I think I read manganese?). If you eat a low protein diet or yu are on a diet, you need tyrosine pills to keep your thyroid from turning off//down and probably also zinc (protein foods are the main source of zinc). TSH should be <2.0.

    My Dad has been crying over how tight his elastic bands are because he is retaining a mountain of water so that even the clothes 2x bigger than he is are hurting him. And I think back to the fact that all my life I could not stand elastic because of swelling, how I had to have my wedding right enlarged 2x to accomodate finger swelling (my fingers did not change size, just sometimes), etc. I eat a low protein diet but if I get on a kick to improve my nutritional status and eat more protein (80g, not a lot) the waste product of protein is ammonia I don't make enough BH4 to get rid of it easily. So...

    magnesium may help you get rid of water. It may require improvement of thyroid function. But if that is not enough it may require more BH4. methylfolate and vitamin C and estrogen all raise BH4. (BUt I have to caution that medical science says that vitamin C causes oxolate kidney stones and can ruin your kidneys. I take 2 g but people have ruined their kidneys on much less). You can buy BH4, it is not cheap. I take DHEA to make estrogen to raise BH4. One of the guys here on PR says that peroxynitrite (ONOO) destroys BH4. So antioxidants (especially if you know they work against ONOO) help maintain BH4 levels.

    I do not know why DMSO gets rid of inflammation. It has two methyls (so must be like SAMe), a sulfur, and an oxygen. Sulfur is very penetrating and drags the oxygen and the methyls deep into the body where they are needed. Methyls turn on or off chemical reactions. maybe something in the urea cycle needs to be methylated. I'll try the DMSO again and get back to you. I honestly never watched the read marks, I only watched the swelling go down.
     
  4. nickpma

    nickpma

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    I know this is a 5 year old post, but I also tend to have the same issues when waking up in the morning every now and then. Did anyone ever found out what causes this?
     
    CampbellRN likes this.
  5. CampbellRN

    CampbellRN

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    Yup, I know what this is: an overactive sympathetic (autonomic) nervous system. Co-existing conditions and emotional stress can further upset the sympathetic nervous system, so it's important to manage those conditions and anything else going on in life from a personal perspective. The body can become stuck in fight-or-flight mode. The good news? It can be reversed! It can, however, take time, which is probably why the original poster said they are noticing the symptoms slowly convalescing. This simply means your autonomic nervous system is re-balancing itself, which is FANTASTIC news (and I hope it's fully recovered since this discussion began in 2012).

    I have all the same symptoms - increased skin impressions (while skin impressions are indeed normal, I began experiencing them much faster and deeper upon interacting with specific stimuli), fingertips that became deeply wrinkled after gently gripping objects such as a fork for just a few seconds, nerve pain that nearly left me disabled (I could barely type on the computer or stand the feeling of someone on the train brushing up against my body), reddened and mottled skin, excessive distal sweating, etc. Sympathetic nerves, which are part of the autonomic nervous system, are responsible for such functions. Sympathetically-mediated nerve pain can be some of the worst pain in the world, and also comes with this variety of seemingly unusual symptoms.

    Here's what I know about my own personal situation, in case it helps someone else just as bewildered as I was:
    - My sympathetic nervous system is indeed overactive - I've had some of the most experienced neurologists in the world clinically observe this (e.g., Mayo Clinic, University of Chicago, Chicago Peripheral Nerve Center, etc.)
    - I've had multiple skin biopsies to check for small fiber neuropathy - NEGATIVE; I know small fiber neuropathy can be patchy, but the biopsies were indeed taken where I experience neurological symptoms
    - I've had multiple QSARTs (a special type of sweat test) to check for autonomic small fiber neuropathy - NEGATIVE
    - I've had a tilt table test to check for autonomic small fiber neuropathy - NEGATIVE; I do have documented orthostatic intolerance, but no documentation of actual nerve damage (that said, my heart rate does occasionally increase by 30+ BPM upon standing, but that's not a constant occurrence at all, and this test didn't pick up on it that particular day, so I wasn't diagnosed with POTS. This isn't uncommon in hypermobile Ehlers-Danlos patients such as myself thanks to our overly stretchy blood vessels.)
    - I've had multiple EMGs to check for for large fiber neuropathy - NEGATIVE
    - I've had a brain MRI to check for MS and brain-related issues - NEGATIVE
    - I've had a Doppler ultrasound to check for circulatory problems - NEGATIVE
    - I do not have CRPS/RSD, although some (not all) of my symptoms closely mirror it given the role of the sympathetic nervous system in these types of conditions
    - I've had dermatographia that is not raised observed, so it was once suspected that I have mast cell issues, but an overactive sympathetic nervous system can also invoke an identical response. Personally, I'm leaning toward my dermatographia being a result of autonomic stimulation, not mast cell activation, as mast cell treatments haven't helped me, but autonomic treatments such as biofeedback have worked wonders so far

    Earlier this year, I noticed that my skin in general is MUCH more prone to dents. For instance, while it's normal for my watch to leave an impression around my wrist, it's literally 10 times deeper and redder than before. And it may or may not hurt me! There are times when it's painful for me to sit down on solid benches, grip pencils, rest my chin on my hands, etc., but that uncomfortableness is not always present. I believe this is because when the sympathetic nervous system is in "fight-or-flight" mode, blood is shunted away from the skin and to the vital organs. That's explains why although skin impressions are normal, they are particularly heightened for us under periods of physical and/or emotional stress (and accompanied by additional symptoms): http://www.thinklikeahorse.org/flight_or_fight.html

    Wrinkled fingertips - even when not wet or cold - became a common occurrence for me at the same exact time I began I experiencing the exaggerated symptoms described above. Interesting, right? Especially given the day-to-day inconsistency, and how each of these can be traced back to the sympathetic nervous system. I'm convinced that sympathetically-mediated vasoconstriction is playing a key role here.

    It should be noted that water-induced fingertip wrinkling been confirmed to be controlled by the sympathetic nervous system (which is why the fingertip wrinkling phenomenon is largely absent or increasingly diminished in patients with more advanced small fiber neuropathy cases - the sympathetic nerves are too damaged). Wrinkled fingertips can sometimes occur in Raynaud's cases when someone is cold, emotionally stressed, etc. I've spoken to other people whose doctors say this all boils down to Raynaud's. Personally, I don't think everyone experiencing this phenomenon has true Raynaud's, but I suspect we all do have overactive sympathetic nervous systems, which can cause conditions such as - or very similar to - Raynaud's:

    1) http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0084949
    2) https://the-sieve.com/2012/04/14/the-story-told-by-fingers-that-dont-wrinkle/

    My feet will sometimes turn purple and yellow upon standing on solid surfaces without socks or shoes, but it's worse on some days than others, so it's not consistently terrible. My hands used to become EXTREMELY mottled when walking around, but it's gotten way better. These are all signs of autonomic dysfunction/sympathetic overdrive, which is very common in the hypermobile Ehlers-Danlos I have. I strongly believe this is a result of vasoconstriction, not too much vasodilation, as it's very similar to the Raynaud's I experience in cold water. An autonomic specialist told me the same thing. He also said the fact that I sometimes cannot detect temperature in my hands and feet is not due to nerve damage, but rather a Raynaud's-type process. My feet always turned SLIGHTLY purple and yellow (even as a young child), but it didn't become severe until this year after going through a very stressful time in my life.

    I've spoken to some other people with similar symptoms, and their doctors have said vasospasms can cause such phenomena (exaggerated skin impressions, wrinkled fingertips, circulatory issues, etc.); sympathetic overdrive can absolutely cause vasospasms through the autonomic nervous system's influence on blood vessels.

    I also have issues with excessive sweating, especially in my hands and feet, as well as when a specific part of my body is touching an object (example = if I'm sitting on a chair, my rear sometimes will start to sweat; if I rest my forearm on a tabletop, sweating sometimes begins). My distal sweating is one of the major reasons I was not diagnosed as having neuropathy, as truly damaged nerves will not sweat (similar to how damaged nerves = no or reduced fingertip wrinkling in water). Compensatory sweating can occur, but I don't seem to have a problem with sweating anywhere on my body, and it's rare for compensatory sweating to occur in the distal limbs anyway. The type of excessive sweating I experience is from sympathetic overactivity.

    Additionally, as initially stated above, I experienced countless other symptoms - disabling nerve pain (seriously, I had to ask my work for keyboard alternatives, and I was terrified I was going to lose my job and entire life), blurry vision, headaches, muscle spasms, incredibly heavy limbs from blood pooling, electric jolts in my brain, burning skin, increased sensitivity to chemicals and pollutants (one of many examples = I vomited and felt extreme skin burning for a week straight, and broke out in rashes for almost a month after smoking a cigarette; I had been occasionally smoking for a few years and never reacted to cigarettes in such a way until after my sympathetic nerves went haywire, so I'm never smoking cigarettes again... at least something positive came out of that horrific time!), etc. I could go on and on. I ended up at Mayo Clinic because I had no idea what to do, or if I could trust neurologists who said it was simply an overactive sympathetic nervous system.

    Bottom line: Biofeedback, meditation, Cymbalta (I'm hoping to only use it for a shorter period of time), medical cannabis, and working on my stressors in life have helped me with symptoms related to my overactive autonomic nervous system. The occurrence of skin impressions and fingertip wrinkling, among other symptoms, are continually decreasing. I'm also looking at the neuro-rehabilitation program as well as the concept of neuroplasticity to re-train my brain to get out of sympathetic mode.

    As someone with hypermobile Ehlers-Danlos, I'm already at risk for autonomic dysfunction, and several years of extreme physical stress (e.g., mononucleosis, recurrent sinus infections, weekly binge drinking, etc.) and emotional stress threw my body into a "fight-or-flight" loop that I'm now working to get myself out of. The original poster of this thread says they experienced symptoms such as nerve pain during times of physical exhaustion and extreme stress, and also mentioned in posts outside of this conversation that they experience blurry vision, light sensitivity, etc. - this is ALL classic sympathetic (autonomic) nervous system overdrive!

    1) Biofeedback - http://www.christopherfisherphd.com/psychological-services/biofeedback/ (Biofeedback)
    2) Neuro-rehabilitation - http://wheelchairtorollerblades.com/ (Wheelchair to Rollerblades - My Story through Neuro-Rehabilitation)
    3) Neuroplasticity - http://www.theaustralian.com.au/news/health-science/training-the-brain-to-beat-pain/news-story/45ad7b7daaaf3c4bbbab6c76b0190ac7 (Nocookies)
     
    Last edited: Nov 10, 2017

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