Life with MS & EDS

November 23, 2010

My Annual Fall Fall

Filed under: Uncategorized — by mseds @ 8:47 pm
Tags: , , , ,

Fall would be my favorite season, but for some reason my health declines each autumn.  From 2001 – 2008, my optic neuritis would come each fall and be gone by spring.  Starting in 2008, it stopped going away in spring, but since then I get pain behind my right eye in November.  Also, I get awful acne, apparently from my rosacea, but I’m not convinced that is the cause.  Over the past month or so, I’ve felt the benefits of my CCSVI angioplasty slip away.  My hand strength is declining and my fatigue is increasing.  It’s pretty discouraging.  I had another Doppler ultrasound to see if my jugular veins are still open, but won’t know the results for a couple of weeks as the doc is away from the office.

I can’t figure out what it is about fall that brings about a decline in my health.  What is it about this time of year that throws my body for a loop?

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6 Comments »

  1. Sounds like your vitamin D levels are dropping pretty low.

    “Embry and colleagues compared monthly Vitamin D blood levels in 415 patients from a particular area in Germany with the number of lesions detected on MRI scanning in MS patients from the same area. High levels of Vitamin D correlated closely with low levels of disease activity and vice versa. The authors recommended that doctors treat their patients with year-round supplements of 3 000-4 000 U per day of Vitamin D. It would not surprise if the effect of sunlight was more marked than interferon or glatiramer. Embry’s paper seemed to suggest a roughly 50-70% reduction in the number of MS lesions when UV exposure was at its maximum in summer compared to mid-winter, so we may see that sort of level of benefit for people getting regular sunlight. And this effect size may be even higher as maximal vitamin D levels were not particularly high in this study. ”

    Check out more: http://www.overcomingmultiplesclerosis.org/Recovery-Program/Sunlight-and-Vitamin-D/

    Comment by Northern — November 25, 2010 @ 12:28 am

  2. I was wondering about the Vitamin D connection. I take 5,000 U daily. I’m not outside a whole lot during the summertime, but I imagine it’s enough to notice a drop come November. I’m going to try adding another D pill this time of year to bring me up to 7,000 and see what happens. Thanks for the suggestion about D!

    Comment by mseds — November 25, 2010 @ 8:46 am

  3. Truly don’t mean to come across as an interfering middle aged woman from the UK. But please, please do check with a medical professional before upping Vit D intake. If only to stop the blogger who frets in the UK from doing so! Toxicity is more common these days than realised and having known of someone with it who just upped their dose without medical consultation, was ill as a result. Googling Vitamin D toxicity for symptoms it is easy to see why the symptoms were masked by my friend’s existing IBS, osteoarthritis, EDS etc. Apparently too much can inhibit uptake of other things also. I appreciate the above comment regarding MS and coping wholly and respectfully but its also really important I think with the internet and all things medical to check things out specifically with one’s own physician. The problem with copying and pasting excerpts is that any warnings or disclaimers are not included.

    My EDS always gets worse in Autumn/Fall with the beginning of winter. Any change of temperature really. I think its autonomic dysfunction related.

    I am so sorry that you are beginning to find that some of the initial benefits of the procedure are waning. I hope this improve’s. A blogger I read under the name of Rusty Hoe on a blog called living with bob (who has terrible POTS – autonomic dysfunction) has just had the same procedure a few weeks ago and her experience’s with it are written with both wit and intelligence. Some of what she says parallels your experience. She is in Australia.

    I hope this is a small set back and that you begin to see some improvements. Weirdly I have PHN in my eye and this is the time of year that always it worsens – I think its the wind so try to up my dry eye ointments. Even though my eye is watering all the time more than usual, that is a sign of it being more dry apparently. PHN is so so painful so please accept my total empathy with the return of your optic neuritis.

    Comment by Achelois — November 26, 2010 @ 7:15 pm

  4. I have the same thing. It’s the shorter days, for sure, the vitamin D. Since I retired, though, I have made it a daily chore to think positive, to enjoy the wintery type things, to get outdoors and to try to enjoy the changes the cold weather brings. I got a little birdbath with warm water in it, I sit by the window for a few minutes watching them splash around. Open all the binds and curtains, let the daylight in! I stay out of the malls. Or dark gloomy restaurants. It’s the first week of December. Long way to go for pleasant weather if you are in a northern clime. So enjoy it and don’t dwell on it. It isn’t easy to stay 100% positive with little ones and all their needs, plus the aches and pains of your own body. Good luck.

    Comment by karen — December 9, 2010 @ 1:28 pm

  5. Hello, I wonder if rocasea is common if you have EDS?

    Comment by Jasmine — April 28, 2013 @ 11:36 am

  6. It does seem that rosacea is common among people with EDS, but I’ve not done any research about it. Just an observation from talking with doctors and others with EDS.

    Comment by mseds — April 28, 2013 @ 11:42 am


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