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#1 T.farah11

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Posted 18 July 2013 - 10:04 PM

Hey everyone! Name's Taylor, I'm 22, from STL, MO newly diagnosed and new to the network. How does this work?! I'm kinda lost on how the site works, finding useful tips and advice, meeting support buddies and such. I think Facebook has trashed my mind :P haha HELP!!! Ok Bio time...I'd been experiencing symptoms of random joint/musle pain and fatigue for about 5 years and was miss diagnosed with ankylosing spondylitis. Last year the pain started fading a bit and the sleep paralysis, and "sleep deprived" feeling kicked in. I ended up taking last semester of after 3 1/2 years of pre-med and moved back in with the parents where I don't know anyone,have no energy to go meet and greet, and still trying to get the dad to realize I'm tired...not lazy...every 22 year olds dream right?! Ughh so frustrating 😤 Two MSLT's later got diagnosed with the big N w/o cateplexy. Has anyone else experienced this?! The doc said I might have just hit the unlucky lottery and have both lol I'm in the process of starting xyrem and hopeful to get on with life!!!

Anyways I'm just looking to make some friends to chat with,share experiences and advice with, and support each other through this sleepy life of ours! :P hahah

Ok time for a nap 😴😴😴

#2 lkl

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Posted 21 July 2013 - 04:15 AM

Does your doctor think that your joint/muscle pain could be related to your narcolepsy?

 

I have been experiencing some significant joint pain/stiffness over the past few months, which had become severe in the past couple of weeks. I was prescribed some cortisone (prednisolone) tablets by my GP, which is now controlling the joint pain, and have an appointment to see a rheumatologist a couple of weeks.



#3 T.farah11

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Posted 23 July 2013 - 12:09 PM

He thinks it could be possible that it is related. He also said that it could just be two coincidental separate problems. The strange thing, in my case, is that I'd been dealing with joint/muscle pain for 4 years without narcolepsy symptoms. How is the cortisone working for you? I was prescribed a round of prednisone earlier this year and honestly felt the best i had felt in years. My reaction to prednisone was so positive it led my general md to CFS and prescribed provigil. My insurance rejected it and required a sleep study to rule out sleep apnea, IH, and ended up with 3 REM's out of 4 naps lol. I'm just throwing it out there but a lot of the research I have done over the years about the joint pain and now narcolepsy I've found that its possible that a type of virus might have caused an autoimmune war attacking the joint/muscles and eventually damaging some hypocretin cells maybe relating the two together? Idk

#4 lkl

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Posted 24 July 2013 - 06:24 AM

I guess it is the other way round for me. I have been having trouble with EDS/narcolepsy symptoms for the past 5-8 years (and was diagnosed with narcolepsy earlier this year), without any problems with joint pain. I was working hard at managing the narcolepsy, and functioning pretty well for a few months, and then I get overwhelmed with joint pain. I feel like my body is finding more ways to self-destruct.

 

The prednisolone dramatically improved the joint pain, so I can now function closer to normal again. As I have started to wean the dose, the pain is slowly creeping back- but is still manageable. I have actually had a heap of courses of prednisolone over the past few years for asthma, and particularly over the past 6 months. I am wondering now, whether that may have been masking earlier signs of joint pain. Prednisolone always makes me feel better, because I can breath better (and now is reducing joint pain too), which helps me sleep better as well. But I've never found it directly helpful in reducing my EDS. In fact, I often take part of the dose at night, so that asthma/joint pain doesn't disrupt my sleep as much. I actually really don't like being on the prednisolone, due to the side effects I get after being on it for more than a week. But it is a necessary evil at the moment.

 

When I was about 7 years old, I had a condition called, Henoch-Schonlein Purpura, which is also caused by an autoimmune reaction, that can be triggered by viruses. It causes joint pain, a rash(caused by bleeding under the skin), abdominal pain and kidney problems. But it goes away on it's own. I think I was pretty sick with it for a few months, but never had any problems with it after that. Makes me think that all these autoimmune things are connected as well.



#5 Ferret

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Posted 24 July 2013 - 01:32 PM

I am no stranger to pain having lived with lower back pain since I was 12. That was the time when I grew 12 inches in 18 months. I am super tolerant to pain. I take one Robax gold every night. A couple of years ago, I started having to take an Advil before my afternoon nap because of radiating muscle pain in my forearms and lower legs. Since I'm 62, I figured it was fairly normal.
I have taken no meds for Narcolepsy and Cataplexy for 25 years until I started Provigil (100 mg) six weeks ago. Within a week, the leg and arm pain vanished and has not returned. I still take the one Robax gold every night and have not taken any Advil since.
Don't know why the pain is gone but I'm very pleased about it.

#6 DeathRabbit

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Posted 25 July 2013 - 11:00 AM

I bet your pain was caused by tension, I imagine. Similarly to how my tension headaches get worse when I try too hard to fight EDS.



#7 lkl

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Posted 19 August 2013 - 04:56 AM

Does your doctor think that your joint/muscle pain could be related to your narcolepsy?

 

I have been experiencing some significant joint pain/stiffness over the past few months, which had become severe in the past couple of weeks. I was prescribed some cortisone (prednisolone) tablets by my GP, which is now controlling the joint pain, and have an appointment to see a rheumatologist a couple of weeks.

 

Thought I'd give an update, I had my appointment with the rheumatologist a couple of weeks ago, and he diagnosed me with rheumatoid arthritis.



#8 Potato

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Posted 07 September 2013 - 12:49 AM

Thought I'd give an update, I had my appointment with the rheumatologist a couple of weeks ago, and he diagnosed me with rheumatoid arthritis.

 

Were you diagnosed on the basis of symptoms alone or did you have blood tests for RF (Rhematoid Factor) and ESR (Erythrocyte Sedimentation Rate) which showed inflammatory processes at work?



#9 lkl

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Posted 28 September 2013 - 05:03 AM

I did have lots of blood tests done, including the ones you mentioned, but because of the amount of prednisolone I had been taking in the days, weeks, months before that, my inflammatory markers were normal. The rheumatologist was still confident that I had some sort of inflammatory arthritis, and given the duration and pattern of my symptoms (stiffness that's worse in the morning, swelling and pain in most of my joints, including fingers and toes), and my family history diagnosed me with rheumatoid arthritis. He decribed those tests being positive, as only "icing on the cake", and that they weren't necessarily needed for a diagnosis.



#10 CreativeConfusion

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Posted 01 October 2013 - 12:39 AM

Um... Hi? I feel silly going back to the original topic at this point, but I don't have anything to contribute to where the current conversation has led other than to say that my body hates me too and the more I move the less I hurt (Sciatica & the bad back of an old woman). I'm in the same boat you're in, T. I think the only difference between the two of us is that I was in school for theatre and music (my mother is the medical one in our family) and I'm 20 instead of 22. Oh! And I'm N w/C, and I have ptsd on top of all of that, but there was a huge debate about my diagnosis too. I decided to take the "best 2 out of 3" method for my diagnosis. Isn't turning into a hermit and spending day after day only halfway awake in your parent's house with your father insisting that you are just lazy just so much fun!? >.<



#11 MDTnarco

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Posted 20 February 2014 - 05:28 PM

Were you diagnosed on the basis of symptoms alone or did you have blood tests for RF (Rhematoid Factor) and ESR (Erythrocyte Sedimentation Rate) which showed inflammatory processes at work?

 

I have N w/ C, and went off all my meds (Xyrem and Ritalin) when I was pregnant and breast feeding.  He's now almost 1!  I started back on Xyrem when he was 4.5 months and Ritalin about 3 months ago.  I started taking about 5 mgs a day which is significantly less than my pre pregnancy dose about 30 mgs a day. My hair recently started falling out pretty significantly, so I called my neurologist to see if it could be a side effect of my meds and he suggested I see my general practitioner.  I did and she ran a few tests including one for Rhematoid Arthrius, which came back positive.  She wants to retest me in 3 months.  I've never had any joint pain.  I have been doing a little research online, was wondering if there's a chance that my test is reading positive because my Narcolepsy? 



#12 Potato

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Posted 04 March 2014 - 01:30 PM

I have N w/ C, and went off all my meds (Xyrem and Ritalin) when I was pregnant and breast feeding.  He's now almost 1!  I started back on Xyrem when he was 4.5 months and Ritalin about 3 months ago.  I started taking about 5 mgs a day which is significantly less than my pre pregnancy dose about 30 mgs a day. My hair recently started falling out pretty significantly, so I called my neurologist to see if it could be a side effect of my meds and he suggested I see my general practitioner.  I did and she ran a few tests including one for Rhematoid Arthrius, which came back positive.  She wants to retest me in 3 months.  I've never had any joint pain.  I have been doing a little research online, was wondering if there's a chance that my test is reading positive because my Narcolepsy? 

 

Sorry for the late reply but the answer is no, absolutely not.

 

You probably had a blood draw for Rheumatoid Factor which can be positive even in the absence of rheumatoid arthritis. RF is also elevated in several other disease states, but sometimes people who are otherwise perfectly healthy come back with positive RF tests. Even if you get another positive result in three months time, if you're not having any relevant symptoms, they'll probably just note it in your chart and that will be the end of it.



#13 littlebosleep

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Posted 13 March 2014 - 02:46 PM

I have lots of joint pain. Sometimes I have to walk with a cane. It's almost always both hips, and comes and goes. Could be a week, or months between 'flares'. It's a long story but in July I started a DMAR, sulfasalazine, and it's been gone for 7 months, YAY!

 

The joint pain was at least 7 years before treatment. boo!

 

Lots of other symptoms too, I just deleted them all from the post in the interest of brevity. 



#14 carrieannburns

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Posted 17 April 2014 - 06:54 AM

Hey everyone! Name's Taylor, I'm 22, from STL, MO newly diagnosed and new to the network. How does this work?! I'm kinda lost on how the site works, finding useful tips and advice, meeting support buddies and such. I think Facebook has trashed my mind :P haha HELP!!! Ok Bio time...I'd been experiencing symptoms of random joint/musle pain and fatigue for about 5 years and was miss diagnosed with ankylosing spondylitis. Last year the pain started fading a bit and the sleep paralysis, and "sleep deprived" feeling kicked in. I ended up taking last semester of after 3 1/2 years of pre-med and moved back in with the parents where I don't know anyone,have no energy to go meet and greet, and still trying to get the dad to realize I'm tired...not lazy...every 22 year olds dream right?! Ughh so frustrating Two MSLT's later got diagnosed with the big N w/o cateplexy. Has anyone else experienced this?! The doc said I might have just hit the unlucky lottery and have both lol I'm in the process of starting xyrem and hopeful to get on with life!!!

Anyways I'm just looking to make some friends to chat with,share experiences and advice with, and support each other through this sleepy life of ours! :P hahah

Ok time for a nap

 

 

It sounds like if you are interested in joining support groups these ones may be suiting for you :)

 

 

Facebook Narcolepsy & Related Support Groups:

 

 

*Groups I Find Priority (Most Helpful)*: 

 

 

 

For Young People With Narcolepsy:

  1. Narcolepsy Youth: https://www.facebook...97366243659141/
  2. Young Adults With Narcolepsy: https://www.facebook.com/groups/YAWNs/
  3. (NAPS) Narcolepsy Awareness & Peer Support: https://www.facebook...ups/NAPS.group/
  4. Young People With Narcolepsy:https://www.facebook...ungPeopleWithN/

 

 

For Students With Narcolepsy:

 

Students With Narcolepsy: https://www.facebook...65929143438477/

 

 

For Women/Females With Narcolepsy:

 

Sleeping Beauty (Women With Narcolepsy):https://www.facebook...90034154391843/

 

 

Narcolepsy & Cataplexy Related Groups:

 

Narcolepsy / Cataplexy Education Focused Group: https://www.facebook...62971610542154/

 

People With Narcolepsy / Cataplexy: https://www.facebook...60978637260153/

 

Cataplexy With Narcolepsy: https://www.facebook...1987/?ref=br_rs

 

Support Narcolepsy and Cataplexy Petition:https://www.facebook...2017/?ref=br_rs

 

Narcolepsy & Cataplexy: https://www.facebook...6253/?ref=br_rs

 

Narcolepsy And Cataplexy Appreciation:https://www.facebook...8864/?ref=br_rs

 

 

 

Themed Narcolepsy Groups:

 

Art:

 

N[Art] (Narcolepsy Art): https://www.facebook.../narcolepsyart/ 

 

Hallucinations & Dreams:

In Your Wildest Dreams: https://www.facebook...34069026625849/

 

Other / Misc. :

 

Lifestyle Change For The Sake Of Narcolepsy: https://www.facebook...36055773234497/

 

Narcolepsy Gamers: https://www.facebook...y.Gamers.Group/

 

People With Narcolepsy Pen Pals: https://www.facebook...colepsyPenPals/

 

Narcoleptic Bloggers: https://www.facebook...96510600380628/

 

 

 

 

I highly suggest to join Narcolepsy Pen Pals, because it is a fun way to friend other people around the world with Narcolepsy and to communicate via a written letter or postcard!!







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