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Does Anyone With Cataplexy Also Have Chronic Neck/back Pain?

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#1 tkozman

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Posted 27 May 2013 - 04:45 PM

twelve years ago when my cataplexy started, i also started having excruciating pain in my neck and shoulder-blade area.  i have found an article "proving" it's true that we have more pain than the average bear ;->, but i want to know whether there are others out there!  thanks for 'listening,'  tam

 

http://www.ncbi.nlm....pubmed/21570344



#2 sk8aplexy

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Posted 27 May 2013 - 07:47 PM

Interesting find.  I thought the other article you found, was also interesting and a pretty good description; the one making a sort of bladder incontinence comparison to sleeping/dreaming...

 

As for what you ask in this post.  'Most Definitely...'  My neck and shoulder for many years now have been a frequent aching/pain.   Since I was young, as far back as I can really recall, I've experienced severe headaches, as well as migraines; they are both 'a bit' less since I've adjusted my foods, but the aching/painful neck and shoulders are very much an ongoing, frequent, ordeal.

I'm very sensitive to my sleeping conditions.  Bed and pillows, temperature as well are a juggle and that is to basically get any sleep.  Decent sleep is rare it seems as I am getting older, 33 now.  Even just sitting on certain couches, or perhaps like bus seats, will trigger the neck or shoulders to begin, thus will radiate up into my head and around to the back of my eyes.  Throbbing or pulsating headaches ensues.  Sometimes by touch, I can feel the lymph nodes or whatever arteries (?), in my neck actually pulsating.

 

I actually spoke with two other persons with Narcolepsy this weekend (for the first time) who both said they experience headaches, and mentioned their necks being sore often (something along those lines)...



#3 Mmartens3

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Posted 28 May 2013 - 08:05 PM

I have chronic neck and back pain but I don't have cataplexy.

#4 e.lena

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Posted 02 June 2013 - 02:35 PM

I have cataplexy and back/neck/body pain daily. I think a lot of it is due to narcolepsy being an autoimmune disease which, for me, also includes severe allergies, chronic inflammatory responses to the environment. My muscles often tighten and swell and massage only makes it worse because my muscles tighten even more. I also have severe headaches and migraines. My temples often swell. I started Xyrem on January so my cataplexy is well controlled now, but I suffered whiplash every time I had a cataplectic attack. I think that was the main cause of the neck and back pain. I still have back pain, but not much in my neck. Now my headaches just started getting worse in the past month. Each headache and many days after have been accompanied with slurred speech, near fainting, confusion, eyes so swollen that I could not wear contacts, inability to see with glasses (colors muted, greys and blacks blurry), heightened sense of hearing so every sound was torture, horrible pulsating headaches at the base of my head and neck. I just had a brain scan Friday to rule out anything else. All in all, autoimmune disorders are always accompanied with weird symptoms and it is difficult to make sense of any of them.

#5 sleepingmonkey

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Posted 04 June 2013 - 12:29 PM

I have cataplexy as well as severe neck, shoulder and upper back pain. These areas are constantly sore and tight, though massage does seem to help. Like e.lena, I too have horrible seasonal allergies.



#6 Hank

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Posted 04 June 2013 - 12:51 PM

I have cataplexy as well as severe neck, shoulder and upper back pain. These areas are constantly sore and tight, though massage does seem to help. Like e.lena, I too have horrible seasonal allergies.


That sounds just like me. Since my EDS and Cataplexy are properly treated and well managed, my upper back and neck and no longer a problem.

I attribute my back/ neck to wear and tear from EDS. Before diagnosis, I was constantly correcting my posture- It is just hard to stand up straight when I am exhausted.

Regarding allergies and sinus problems, that is also improved. Last fall, after being on Xyrem for about 4 months, I thought I had a nasty sinus infection. I was constantly blowing !@#$ out of my nose and coughing up $&^%. After it cleared up, I could breathe perfectly out of my nose. That is not something I ever recall doing comfortably. I think Xyrem just allowed my body to get a foothold and clear out years of crud. Sounds gross. Although I discontinued Xyrem, I am thankful for the lasting improvements it has allowed me.

#7 tkozman

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Posted 05 June 2013 - 01:06 PM

 

I attribute my back/ neck to wear and tear from EDS. Before diagnosis, I was constantly correcting my posture- It is just hard to stand up straight when I am exhausted.
 

 

 

 

I attribute my back/ neck to wear and tear from EDS. Before diagnosis, I was constantly correcting my posture- It is just hard to stand up straight when I am exhausted.
 

 

that had been my thought exactly!!!  i always said my shoulders were stiff and sore from just trying to hold my head up!

 

 



#8 tkozman

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Posted 05 June 2013 - 01:08 PM

in addition, i now think that when our head/neck go SUDDENLY slack, and then back again, we might be experiencing a whiplash-type injury.



#9 Hank

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Posted 05 June 2013 - 01:18 PM

in addition, i now think that when our head/neck go SUDDENLY slack, and then back again, we might be experiencing a whiplash-type injury.


Ouch- your cataplexy sounds nasty. Fortunately, my head/neck to not react with the suddenness to cause a whip-lash injury.

For me, exerises to stretch and strengthen my pectorals has been helpful. When they are too tight, they pull the shoulders inward into a slumping position- like when you are sitting poorly at a computer.

When my chest is stretched, maintaining my posture is effortless. And when I am not fighting sleep, I don't slump. So, for me, it all plays off each other. And, like just about everything for me, it originates with a quality night's sleep.

#10 tkozman

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Posted 12 June 2013 - 11:27 AM

i did think my shoulders and neck were sore from trying to keep my head upright!  :-)  unfortunately for people with narcolepsy, the whole disorder does involve disrupted nighttime sleep patterns.  xyrem is supposed to address exactly this issue to give us a more "quality night's sleep."

 

but now, i've developed an excruciatingly painful "winged scapula" which can result from trauma, including a rear-end auto collision [which i have not, thank goodness, experienced].  cataplexy mimicking whiplash is a possible explanation.



#11 Mmartens3

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Posted 20 June 2013 - 11:41 PM

I have been receiving chiropractic treatment for chronic headaches and upper back pain. It has been 9 months. I have been attempting to correct my posture through exercise and just trying to hold myself up the right way. My headaches don't come back as long as I constantly hold myself upright. It is extremely exhausting. And my back pain is not improving. My neck and shoulders are always tense. My chiropractor thinks I should be strong enough by now. I just don't have enough strength. Every Sunday, I attempt to hold my posture through Sunday school and the church service (9:30 - 12:30) by the time we get to my in-laws house for lunch I am so exhausted and my muscles are so tense. I feel like I had been lifting weights the whole time. I just collapse on the bed with my ice pack while everyone else eats lunch. Anytime I am sitting up I am trying to maintain posture. If I lay down too much my headache comes back and my back pain is worse. And since I have N that happens a lot. My EDS is worse since changing my posture but I can't go back to having a chronic daily headache. I hate feeling exhausted all the time and being in constant pain. I keep telling myself I just need to get stronger. Still waiting....

#12 tkozman

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Posted 21 June 2013 - 01:00 PM

i *hate* living on ice packs! ;-)



#13 sk8aplexy

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Posted 22 June 2013 - 09:53 AM

Wow, there's a lot on this topic that is way too familiar:  chronic neck/shoulder soreness/aches, frequent headaches (which for me feel like throbbing from neck up into the back of my eyes), Cataplexy head bobbing or whiplash sort of collapsing, difficulty holding head up during Cataplexy or while nodding off, ice packs, etc...

 

A friend showed me a set of, very light stretching exercises which I've been doing for around a year.

They've helped me in many ways (there's been many other things I've done that have contributed as well like food changes, but I know these have helped me out a lot); I'll attempt explaining them below:

The stretches consist of doing basically the same thing in different sets of motions. 

Reaching outwards (away from body) with arms, while both standing straight upright (feet straight forwards, shoulder length apart) and looking/holding-head upward (not straight up, nor straight ahead; basically chin up, if you're standing 3'-5' from a door, look at the top of the doorway), slowly squeeze shoulder blades together (focusing on such and breathing) while just slightly stretching arms backwards (remember to focus on shoulder blades and not a large movement of arms..). 

It is to be gentle and not exerting force. 

There are numerous positions (directions) which I do, straight outwards with arms are, like T, straight upwards are, like I, down to the sides are, upside-down V / ^, up and outwards are, like Y, and pointing downwards towards front/toes, like ||.  I do each of these 10-20 times, sometimes a couple of times a day, along with some other basic stretching.  

Before I do these I first reach as far upwards as I can for 5-10 seconds holding it, then I bend down and reach for toes, holding it for 5-10 seconds. 

Be careful and begin slow, if you attempt them.  It's all about 'natural equilibrium' / balance...

Doing these, for me, are quite meditative too, as I basically just count in my head while breathing slowly and focusing on my body sensations.

These have really helped my posture, my neck aching, have reduced my headaches (along with food changes), and definitely has helped my circulation...

Thought I'd offer it, no idea if the above is interpretable...?!



#14 Hank

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Posted 23 June 2013 - 12:18 AM

You just described the same exercise I do when my neck/shoulders are causing me trouble.



#15 Ferret

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Posted 23 June 2013 - 10:50 AM

Sk8aplexy, I would be interested to know what food changes you have made. You've mentioned it twice in this thread but have not elaborated.

My hubby made a wonderful sauce last night to be served over homemade ravioli stuffed with spinach. The sauce base was Campbell's cream of mushroom soup...with MSG. I tossed and turned like a whirling dervish all night. Today, I feel like I've been run over by a Mack truck...headache, stiff neck, aching and stiff shoulder blades. I know, from experience, that this will pass.

Some yoga moves that help...

1) Sitting in a chair, grab your left elbow with your right  hand and gently pull that left elbow towards your body until your left hand is over and past your right shoulder. Breathe deeply and hold. Release and do the opposite with your right elbow and left hand.

2) laying on your back, breathe deeply, cross your arms (each to the opposite side) until the elbow of each arm is pointing straight up and they are side by side. Breathe deeply, hold, and breathe deeply again. You should feel the centre of your shoulder area open and move closer to the floor as you exhale. Your hands will also move closer to the floor as you exhale.

 

Finding a good yoga teacher and the right kind of yoga is about on a par with finding out which meds work for you. Time and patience.

My preference is Hatha yoga and quiet, gentle stretch. New age aerobic yoga and hot yoga just about killed me.



#16 sk8aplexy

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Posted 23 June 2013 - 03:39 PM

Right on, Ferret.  I react to Cambell's 'Cream of Mushroom' -I used to eat a lot of it and loved using it in cooking- but no longer do.

There was a lot I changed regarding what I eat, and it was not, nor is still at times, easy (especially when traveling or socializing).

 

Basically, I cook most everything that I eat (90%+) and am very careful as to the ingredients/products I use.

Gluten-Free and Dairy-Free, I attempt to be; there are many chips out there which are Gluten-Free, although many good chips contain dairy unfortunately...

I try to use organic as much as possible, and if I'm eating meat or eggs I especially only eat Organic from reliable local/co-op stores (I live in a city that has many options for such).

-It is not cheap, but considering I don't eat out, I think the trade off is fair and in the end the cost is acceptable.-

Meat, I eat in moderation (compared to before, it being a daily thing for years, and in large quantities); that is to say perhaps 3 or 4 meals a week with 'some' meat within.

Every day I eat a large salad of Kale with other lettuces/spinach and vegetables.

Also, I eat a lot of Avocados/Guacamole.

I use a lot of Coconut Oil and other 'organic' oils; Almond, Sesame, Avocado, Extra Virgin Olive, etc...

I use a lot of Indian spices like Turmeric (Curcumin), Cumin, Coriander, Curry, etc...

I use Himalayan Salt and on the occasion Sea Salt, but never table salt/s.

I use raw Honey and Natural Syrups occasionally, no refined sugars or alternatives, I eat a 85%+ dark chocolate bar almost every few days and I use a lot of cinnamon every chance I get (including in my decaf coffee with almond or soy milk -Starbucks 'soy' milk causes me headaches likely due to the sugar used within it-).

There are alternatives for most all things you are used to, it is tricky finding what works and what taste right; I recommend for instance, 'Red Mill - Gluten Free Pancake Mix' as a close to normal Pancake/s.  Breads are out there, but expensive and not always (or often) what you may want (comparably speaking to so many breads available).  There are many milks available; soy, almond, coconut, rice...

 

It's still a juggle, but I do think I've come a long way in bettering myself, yet I now rather than notice having a headache 'most of the time' notice that I'm 'daydreaming and/or nodding off' -that is, if my mind is not stimulated by something/activity/interest-...

 

Good luck, hope that helps somehow.



#17 Ferret

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Posted 23 June 2013 - 10:27 PM

Way to go Sk8aplexy! It does take time and effort to find out what works for you. Your grocery list and shopping/cooking habits are almost identical to ours. We are lucky to have an organic market Tuesdays and Fridays about five minutes away.

We are not dairy free or gluten free but we did go that route for close to eight months with no ill effect or better effect...introduced dairy back one thing at a time with a week in between each change...same for gluten. Cheese is only white cheese.

There are no snack foods in our house and I do not use any kind of salt except for the table when we have guests. Same for white or brown sugar but Pure Maple Syrup from Canada ROCKS!

I can't find Swiss water processed decaf coffee here and the other decaf coffees uses Methylene Chloride in the process. I chose, instead, to buy Dark Roast Coffees which are lower in caffeine. Try a little ground cardamom in your coffee. I think you might like it.

Is the curry that you use a mix/blend ? I'm using a mix (that I have muled down from Canada) and I do react to it (no big deal since it's only once every couple of weeks). I am at a loss to know what kind or brand of "pure" curry to buy.

Bob's Red Mill products are wonderful and I use his Bulgar Wheat to make a Tabbouleh Salad...warning...his recipe is a little bland so I added more lemon juice and cumin to the mix. But if you're gluten free, then you can't use that product.

Thanks for sharing your tips...always appreciated.







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