Question - Narcolepsy

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Severe Body Pain

Asked 8 years ago Lindy 41

Does anyone experience severe body pain? Especially upon waking up and if not moving frequently. I wake up in a lot of pain every moring. I know that I clench my muscles while I sleep (although I am trying to convince my Dr. otherwise) as I have been told by my partners time and time again over the years. My muscles are tense 24/7 and in knots, so bad, my massage therapist of a year said I needed to see a Dr. about it... my joints hurt and pop constantly. I ache and have feelings of spasms and lightening shooting randomly all over my body.  It is only getting worse and I am trying to find answers.

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2

I swear I could have written this. Yes. All of this.... Yes. What do we do? Anyone a few steps ahead with some suggestions for relief?

 

Answered 8 years ago Jennifer 10
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I have a back (8-9 herniated discs) and neck injury from a car accident, but even before that I had generalized muscle pain. I have TMJ from clenching my jaw so badly and so much, especially when sleeping. I'm a nurse, so being on my feet for 12.5 shifts really kills my body. I'm only in my late 20's but I have to wear high compression stockings or else my calf muscles are too sore to even drive home at the end of the day. Even the muscles on the bottom of my feet burn with the most supportive shoes. Every time I go for a massage, the therapist is shocked by how tense my shoulders are and how many knots/kinks I have. So, I completely understand how you feel, unfortunately. 

Answered 8 years ago Sarah 21
1

Oh, and added to the Narcolepsy causing poor sleep, I too can't comfortably lay in the same position for very long. And, due to my back issues, I can only sleep on my sides. If I had to guess, I would say I wake up (at least) every 2 hours to reposition.

Answered 8 years ago Sarah 21
0

I am the same way. Anyone gotten answers from dr's on this?  I've heard a lot of people with N also have rheumatoid arthritis and others have fibromyalgia. I haven't been checked for either but I'm going to in the near future.

I also noticed a couple of days ago that I have a red line under my thumbnail that runs the vertical length of the nail (so it starts at the cuticle and runs to the tip of my nail). Anyone have this also?

Answered 8 years ago Lisa 0
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About 4 years ago before i was diagnosed I had had severe joint pain, especially in the morning. I could barely walk down the stairs in the morning. I woud have to pause a nd prepare myself for the next step. I was very depressing because I thought if it was that bad now, ( I was barely 50) what would it be like as I got older!?!?!? Then I was I was diagnosed with servere sleep apnea and Narcolespy. Using the Bipap machine ( though I hated it and fondly called it, That damned machine) regularly, first stopped the headaches I woke with almost daily and then gradually, over several weeks, the joint apain stopped. I learned that sleep deprivation lowers your thrusthold for pain. I could think back and I think Identify when the narcoelpsy symptoms started (when I was about 26) but who knows when I developed sleep apnea/ There for who can know how long the cumulitive effcts of sleep deprivation night after night were taking its told on my body. ( I had a host of other medical stuff happening like ostiopathic high blood pressure, and scary short term memory problems). Anyone can develop sleep apnea at any time. PWN have a higher incidence rate then non PWN. The older anyone gets the more likly they will develop sleep apnea. PWN may have had sleep apnea ruled out back when they were dignosed with narcolepsy, but they may develop sleep apnea in the years after diagnosis.  I have seen that when people with chronic disorders/diseases like narcolepsy and M.S., diabetes, etc reprt increase fatigue or joint pain or concentration/memory problems or other new or worsening symptoms it tends to all be attributed to the original diagnosis. (People with M.S. are also at higher risk for developing sleep apnea). Doctors that should be aware of all that I have just mentioned, don't seem to think to recommend another sleep study to rule out that the patient, who may have been diagnosed 3, 5, 10 year ago, may have develped sleep apnea. So please keep this in mind and tell others. My pain is gone. My blod pressure is normal. I function damned well day in and day out. Also, as long as I have an audience, let me share that I recommed Glucusamine Chondrotine. I have been taking it religiously since age 35 and when I recently had a hip x-ray, they commented that my cartillegde showed significantly less deterioration then would be expected in a person my age.  I started taking it because I fonld that it all but eliminated my TMJ symptoms. My jaw would start hurting and /or locking again whenever I went of it for an extended length of time. I really hope this info helps someone.        

Answered 8 years ago Marilyn 15
0

Hi, i have a condition called joint hypermobility syndrome or Ehlers Danlos Syndrome type 3. It is a connective tissue disorder most people will notice they are very flexible (double jointed) for me it started with my knees dislocating maybe the popping your describing? Now most of my joints pop out daily and im held together with splints im in constant pain mornings are the worst i see a rheumatologist who was the one who spotted my narcolepsy last year tho i dont think its connected to EDS but it could be worth looking into there is a lot of info on the internet maybe you could have a look see if you match the symptoms? Unfortunately EDS is another under diagnosed condition often confused with fibro and the medical profession are not always upto date with recent studies so it can be very difficult to get the best treatment tho they are slowly catching up if i have to attend A&E for a dislocation sometimes i have to explain to drs what EDS is as some have never heard of it. 

Good luck xx

Answered 8 years ago Cheryl 30
0

I am just the same. Obviously with having Narcolepsy with cataplexy I'm prone to put weight on, and yes I have always been a big girl but sick of doctors saying ' if u lose weight it will help'. I have osteoarthritis in knees but they now saying possible fibromyalgia. I not 100% sure about that, and I'm reluctant to accept another diagnosis of condition that they can do anything about. 

Answered 6 years ago Nicola 10
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Yes! I have pain every single day, morning

Muscle paralisis,-and i start moving nearly 30 to 60 minutes after "awakening", This is also very painf

if you think about it, your muscles don't have the information you are awake right? The sleep paralisis exists to protect us from injuries while sleeping. So, if the body doesn't know we are awake, and did' receive that info from the brain every movement you try to make will hurt. I think thats the explanation.

 

also I think narcolepsy is a kind of mix of the sintoms

of many other diseases like: epilepsy,multiple sclerosis, diabetis, parkinson, reumatism, migrain, etc

i think doctors dont give the importance this disease has, nor the society knows, nor the legislation protects the narcoleptic patient. Is very incapacitating really, and there are no effective medication that can control the disease, and the minimum stress can put you paralised or assleep.

Answered 6 years ago sns 1510
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