Reasonably Well: Sjögren's and Cognitive Function

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Everyone should read Julia from Reasonably Well’s excellent post entitled Tufts Study: Despite Burden Sjögren’s Syndrome May Not Impede Function that discussed new research on Sjögren’s Syndrome and cognitive difficulties.   You can read the whole extremely informative post here.  I’m going to comment on some of my favorite parts below and add some of my own reactions.

The Tufts Study concludes that Sjogren’s patients despite their perception “appear to function at a level comparable to their healthier peers.”  This is obviously good news, but Julia addressed some of the potential flaws with the study and raises research questions for the future.

Starting with the issue of fatigue, Julia writes:

I noticed that the assessment of fatigue…was not located in the physical section but rather in the Mental/Emotional locale.  There were no physician evaluations of joint pain, pure neurological problems (as opposed to neuropsychiatric), pulmonary issues, renal problems….to name just a few well-documented extra glandular manifestations of Sjögren’s.

She goes on to say (I love this part).

Since fatigue is one of my most disabling symptoms of Sjs and I'm a bit touchy about labeling fatigue as an all in your head symptom, I found it interesting that elsewhere in the discussion section of this study, fatigue is included under the description of "neuropsychiatric problems".

Well, I must say I’m touchy about this too.  And isn’t their bias in the research if fatigue is classified as neuropsychiatric from the beginning?

And I have had a similar experience to Julia where as she writes that for her tired=stupid.  What a perfect equation. I completely relate.  When I’m having complete autoimmune exhaustion, I also have what I would call brain-fog. 

This idea also got me thinking.  Do studies need to include both disease activity and cognitive function? Would it be worth exploring whether “flares” have both cognitive and physical impacts?  And Julia also brings up another super super important point about study design:

This was not a longitudinal study. Study authors would have no data to support their discussion of length of disease related issues.

In another small controlled study on the subject conducted by doctors and psychologists, including the Director of the Penn Sjögren’s Center, Dr. Frederick Vivino, found significantly lower IQ scores and lower verbal memory scores for the Sjögren’s group (click here for the study). No statistically significant differences were found on concentration and processing speed, visual memory, or executive function.  Interestingly Tufts and the Penn Studies used different measures of cognitive function.  While the Penn study also clearly had its limitations with only 17 participants and it did not occur over a period of time, the authors tend to stay away from broad generalizations, and suggest more research including “correlating neuropsychological findings with neuroimaging.”

On the other hand, the abstract of the Study out of Tufts University concludes that "Sjögren's patients perceive deteriorated physical function over time, but they achieve a level of functioning comparable to controls despite the burden of their illness" (click here for the abstract). In my opinion, that language is a bit misleading. Making physical conclusions about a cognitive study makes little sense. 

Perhaps, if a rheumatologist who regularly evaluates patients and the glandular and extraglandular manifestations Sjögren's had been involved in the study, he/she would have taken other issues into account.

While it is always good to see new research on Sjögren’s, it’s also important that the authors identify the scope and limits of their research. 

Thanks Julia for your excellent post and bringing it to the attention of all us Sjöggies.

What did you think of the Tufts Study?  If you could suggest new research on Sjögren's, what would you focus on?

Trigeminal Neuralgia and Turtle Fur

From reading the tittle, you might be thinking what do the trigeminal nerves have to do with turtle fur and do turtles even have fur?  But I promise this post is actually about something that I find extremely helpful during these frigid windy months called Turtle Fur.

As I've mentioned in the past, I have cranial nerve involvement as result of Sjögren's and unfortunately my trigeminal nerves have been affected.  Check out my previous post here and the awesome Sjögren's blogger Julia from Reasonably Well has also discussed it here.  

The bottom line is that trigeminal neuralgia is an extremely, extremely painful condition and unfortunately wind or cold touching the face can be a major pain trigger for many who suffer from it. This presents a great challenge for those of us who live climates with frigid and windy winters. For me, this means that in order to go outside in the winter, I need to keep my face protected at all times.  Something like a scarf just doesn't do it because the trigeminal nerve runs down the side of the entire face and has three main branches that also cross the face.  Scarves and even pashminas also don't stay up completely and can easily fall down as I've learned the hard way.  Believe me, I've tried everything.

A couple years ago, I found a product called the Turtle Fur Neck Warmer (pictured below) that has been a saving grace.  It is made from fleece, soft and warm, and feels good on my face.  I find that some materials can also be aggravating to my trigeminal nerves.  The great thing about this product is that it can go up all the way to right below my eyes and actually stays there.  Most other products I tried in the past would usually fall down at some point leaving my face exposed. My other favorite thing about this neck warmer is that it has a double layers of fleece so it's very warm.  

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Now, turtle fur isn't the only part of my trigeminal nerve protection routine.  I also wear big sunglasses, which shield my dry eyes and the branch of the trigeminal nerve that crosses the eyelid and forehead.  To complete my going outside garb, I wear a hat with side flaps that is lined with a fleece material that covers my forehead completely and adds double protection for my ears, which also have been impacted by Sjögren's (There are plenty of variations of these).  I might not be recognizable when I go out in the winter, but at least I have found a way to go out and be in less pain. 

This faux fur looked particularly protective

Mine is a variation on this lined with fleece

How do you protect yourself in the winter to minimize your autoimmune symptoms?


***Please note I have no relationship with any of the companies mentioned in this or any other post***

Beware: Sjöggie in the Kitchen

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So I'm starting to feel somewhat better as I mentioned in my last post.  I decided it was time to get back in the kitchen and do a little cooking.  One of my winter favorites is Turkey Soup.  I find it to be richer and tastier than chicken soup and the meat keeps its flavor even after simmering for over an hour.  

For me, however, even making soup can be an adventure. The story goes like this. I'm enjoying my new found post-flare freedom as I cook my delicious soup. I am stirring the soup.  Smelling the soup.  Pretending to be a real cook.  Then the timer goes off.  It is time to taste the very hot soup that has been cooking for close to an hour and a half. I take the ladle holding boiling soup and manage to pour it not in my mouth, but on my chin.  My mind must have been wandering at that critical moment. The soup was very, very hot.  Did I mention it was hot?  Lucky me, I now find myself with a burn. 

At first, I didn't think it was much of anything.   But my chin is quite red where the soup hit it.  No blistering at least, but I definitely have a burn there. I had planned this to be my well-deserved hiatus from doctoring.  Instead, I will be at the doctor bright and early tomorrow morning to make sure that I don't need to do anything to prevent it from scarring or getting infected.  

This is the danger of being both a Sjöggie and a klutz!  When my autoimmune symptoms seem to settle, I absentmindedly injure myself. Well, I guess at least this is a "normal"-person doctor visit.  

I don't want any of this to be taken as a knock on my favorite Turkey Soup. In case any of you want to try your own version, I've provided the super easy recipe below. As with all my recipes, it is adjusted for me significantly due to wide-ranging food allergies.  I'm sure others can add additional flavors, but I'm very limited...and I still think this tastes great. 

Please do beware in the kitchen, I don't want anyone else to injure themselves on account of this soup!

Winter Turkey Soup

Ingredients

2 Turkey Thighs (or other Turkey Parts of your choosing)

4-6 Peeled and Sliced Fresh Carrots, 

8 Small Potatoes 

Fresh or Dried Parsley

2 1/2 teaspoons Sea salt or Kosher Salt

Pepper 

6-8 cups of water

Directions

1) Place turkey thighs in soup pot.

2) Add any vegetables you desire and parsley on top of turkey. ***I'm limited in the ingredients that I can use due to food allergies.  But if I could I would also add garlic, onions, and celery.***

3) Pour six cups of water into pot or enough to cover vegetables and turkey.

4) Spice accordingly with salt and pepper.

5) Bring soup mixture to boil. It usually takes about 20 minutes.

6) Keep soup partially covered and simmer for 1 hour.

7) Stir occasionally and add an additional half cup of water if too much liquid has evaporated.

8) Once finished cooking, transfer turkey to bowl.  When adequately cooled, remove turkey meat from bone and add back to soup. 

9) Serve with your favorite noodles or rice.