Central Pain Syndrome and Severe Obstructive/Central Apnea

Hi everyone,

It’s been a wild ride the last few months.  When I left, my pain level had reached an all time high, I was tired and I just felt I had nothing left to give.  I was disappointed after my first appointment with my pain specialist and a different doctor told me she didn’t think I really had MS.  So, I left since I didn’t really belong here.

Allot has changed since then.

I finally complied with the sleep study referral and it was found that I have severe sleep apnea.  Some of my apneas are obstructive, some central and some mixed.   Severe Apnea is a score of 30 and above, mine is 74 which means that I stop breathing 74 times per hour.  My legs are moving 92 times per hour as well.  So, roughly each minute I have some type of apnea and my legs are running a d-mn marathon.  My oxygen sats go down to 81 for about 20% of the sleep time.  

The next study (titration) with the CPAP only reduced apnea episodes to 36 per hour—still severe.  So, I have to go back a third time.  

Arrythmias were ‘extreme’ and lung function was ‘severe’, possible intrinsic lung disease it said.  The report is long but that’s the important part.

So, my doctors were right all along.

I am having a hard time comprehending all of this.  It’s hard to believe but then I’m not conscious for this.  
My new pain doctor also told me that I do have Central Pain Syndrome, this is what people with spinal cord injuries have.  It’s that kind of pain.  It helps explain so much and it is so validating

My MS diagnosis is now engraved in black and white at the university hospital and clinics.  The current theory is that I may have Secondary Progressive, they think I had my first episode in my early 30’s when I had things going on that I believed to be too crazy to talk about.

But, my diagnosis is in black and white, paired with Polyneuropathy, Central Pain Syndrome, Carpal Tunnel etc. etc.

Sometimes I don’t feel like a person anymore, I feel like a thing surrounded by diagnoses.  

So, here I am.

Have any of you with Obstructive Sleep Apnea had your pain reduced through the Cpap?  Did you have oxygen along with the cpap?  Have any of you been given the diagnosis of Central Pain?

Thanks,  it’s great to see all of you again, but sad for those who are in relapse right now
Red

[grannyhotwheels]

I have been diagnosed with RSD (Reflex Sympathetic Dystrophy) which is chronic pain... This along with my diagnosis of PPMS has not been good for me at all... I also suffer from depression but who wouldn't? lol  

I'm so sorry you are going through all of this... I know what you mean when you said that sometimes you don't feel like a person but something surrounded by diagnoses... We just need to remember we have these diseases they don't have us...

Learn as much as you can about each of your diseases so that you can better advocate for yourself... It must be very depressing to have so much going on with your body...

My husband has severe sleep apnea and the CPAP doesn't completely help his breathing either... I'm always telling him that I counted to 20, 30, 40, between each time you would breathe and he's like "how far would you count before nudging me" haha... I never thought about it...lol

I wish you the best and pray they can find something to relieve your symptoms...

I'll be praying,
Carol

[addicted2harleys]

Wow, Lois-

I am so very happy that you, too, have finally found the right doctors.  And, most of all, validation from the medical community.  The sleep study shows some strong concerns, but it seems that you have a competent doctor treating you...which is great!

Though I am not happy with your concrete dx by all means, I am thankful that you have your answer that will no longer be questioned.  You deserved this long ago.  

As for leaving this group...ehem...what is it that you just told me in my post??  Seriously though, Lois, I understand the frame of mind you were in at that time and how that played a part in you leaving.  But, leaving the best support system that I can think of is the absolute wrong thing to do.  Okay?

Do I need to scratch your name in a nailed and glued down chair right here next to mine in this room or what?  Cause you know I will!

I hope you feel at least a little, if not more, peace in the care you are finally recieving now.  I am sure there are others here who can help you with the questions you asked, as I cannot.  My mom has severe sleep apnea, too, and wears the cpap to sleep but that is all I know about it...well, except that I know she feels more refreshed and has more energy since she got it.

Just wondering...has your sister been more supportive for you?  I hope so...

Now, go order your cooling vest from the MS people!!  lol.  I know it would be very helpful to you to have.  

Love ya, red!  Hang in there.  We may be on separate mountains but that doesn't mean anything at all.  You are my friend and I hate to see you hurt...physically and emotionally.  I was so worried about you while you were gone!

Gently hugs,
Addi

[addicted2harleys]

Lol...I just reread your post and got a chuckle at the counting thing with your hubby.  :)

Gotta keep laughter in the mix at all times, right?

Hugs,
Addi

[Sailorsong]

I do feel for you with all of those diagnoses, as I am pretty much in the same boat here. I have so many I can never remember all of them. LOL

I do hope that this will mean you will get the care you need finally.

Dennis

[supermum_ms]

Hey Red, I'm so glad you've posted an update though i cant work out if its a good or bad outcome :-(

The only thing i know about sleep apnea is through my DH, it took me 3 years to get him to tell his dr what i was witnessing, he was blissfully unaware he was not breathing, he came out as chronic too,  54 times an hour is mind boggling but 74 holey crap!! He's not using his CPAP anymore, it made a huge huge difference to his quality of sleep and he had/has more motivation to takle issues, especially his weight problem. Which turns out to be both comorbid issues with sleep apnea, today he's a different person so finding out about the sleep apnea is i think a good thing!

The Peripheral neuropathy (is that similar to polyneuropathy?) central pain syndrome and carpal tunnel is what my brother has been dx, he also has Aspergers with all the sensory issues that come along with that. He's on a cocktail of drugs, its helping him get back on his feet, not perfect but making a really big difference in the level of pain he deals with.

I dont have personal experience to understand what it is you live with, just knowing what they have gone through is giving me a clue but sheesh NO WONDER YOU'VE BEEN FEELING LIKE $#!% Try and be kind to your self for a while, its gonna take some time to sort this out, your getting closer just by having an answer but theres still a road to travel, so please be kind to your self!

HUGS...............JJ

[jujuminx]

{{{{{{{{{{{{{Lois}}}}}}}}}}}}}}}  It may s uck, but you have some very long awaited answers.  It also highlights the fact for all of us that just b/c we have MS doesn't mean that other things aren't going on in our bodies that need attending to.  Too often we attribute all our physical challenges to MS.

Anyway, I am looking forward to reading about some new treatments to help you live your life painfree.  I'm sorry, I  don't know anything about sleep apnea so I cannot offer any information to you on that.

Please continue to stay on this forum and interact with us. You are greatly missed and loved.

Julie

[RedFlame]

It's great to wake up in the morning to all of these responses and words of support.  Thank you!

Carol,  I'm sorry to hear that you have been diagnosed with PPMS and RSD!  And, maybe your should nudge your husband on the shoulder lol.

{Addi}!  It's so great to hear from you--I know you are so busy in rehab.  As far as the sleep study goes, there are quite a few concerns.  I saw the sleep specialist yesterday, I was in there for nearly two hours--amazing.  This week they are doing some parallel testing for some parasomnia things I think they said.  I probably have some COPD from years of smoking.  

As far as the carved name holders, we need to remind each other that we are part of this community regardless of what doctors do or don't say.  It's easier said than done huh.  

We can yell from one mountain to the other---love ya Addi

Dennis, thank you so much.  Getting help is an ever evolving process isn't it?

Hi JJ!  Yes, finding the sleep apnea was very important.  I can't tell you how many times I had been referred for a study and basically blew it off.  What a dunce.  I do have some other sleep issues one being a sleep eating syndrome (possibly), so, the apnea is a huge deal.  

I don't know the difference between poly and peripheral neuropathy.  I have numerous areas of paresis throughout my body,

{Julie}  Yes!  I am so grateful to finally have some answers.  Treatment will be such a relief and maybe I will get some of this weight off!

I will keepp all of you posted when I begin treatment.

I am so greatful for all of you!

[kelly97]

I'm glad that you're back again!!! We miss seeing you on here.

So...once again, like Addi, you can say, I told you so to all the dumb-@$$ doctors you've seen that said that you were basically a hypochondriac and that nothing was wrong with you. You definitely should feel some validation!  

You are definitely seen as a person to all of us!

Take Care and HUGS to you,
Kelly

[RedFlame]

Hi Kelly!!

Yes, Addi and I finally have definitive answers, and at the same time.  Must be the red-hair.

Thanks Kelly

Hugs to you too!

Red

[addicted2harleys]

Isn't that kinda ironic?  lol

We also joined this forum at the same time.  :)

Definitely the red hair!

Hugs,
Addi

[RazCarver]

maybe I need to dye my hair red?    I don't know about being "surrounded by diagnoses" but being surrounded by symptoms without help or being listened to doesn't work. maybe having the diagnoses might mean finding some answers or some help. sounds like you are working on it and that is great.

[Guitar_grrrl]

Good to see you, Red!  Sorry you've had to go through so much crap to get to where you are...
I experienced my first CPAP as a roomate at a music retreat.  My roomie introduced herself and her machine, and handed me a pair of earplugs.  I thought "oh, oh, this is gonna be a loooong weekend!"  It sounded like normal breathing!  I didn't need the earplugs, and I handed them back in their clear plastic package.  That machine was so quiet, and has helped her tremendously since she got it!  I wish you the same success.

[RedFlame]

Addi,  yes, it is the red hair!

Raz, waiting for diagnoses is painful in many ways.  Most of us here have struggled long before we were diagnosed.  So, you have found a group who knows how that feels.

thanks Guitarrgirl!! hopefully mine will also be quiet!  At this point, I am looking forward to getting started.  I am hoping this third study will ascertain the correct pressure and/or combination of therapies.

Thanks again everyone!

Red

[summerluvr]

Yikes 74 times stopped breathing?  I am so glad you finally went for the sleep study and discovered this.  Good sleep makes everyone feel a lot better regardless of the other diagnosis.  When I couldn't sleep after my stem cell I was already a zombie from the chemo fatigue, but then not sleeping made me feel even worse.

Unrelated but I had (have) really bad post nasal drip.  I would wake up coughing and choking all the time at night.  I didn't really notice until my asthma doctor pointed it out and made me start using a nose spray (not just puffers) and my breathing (and constant throat clearing cough) got much better!  There aer good doctors out there.  I think I have finally found them ;)

[Deb61]

Good heavens--that is terrible!  This is totally unheard of!  A person that I work with has this, too.  He said that he was waking up somewhere in the 50's.  He said that he didn't have this problem until after encephalitis.  So, in your case it could very well be from the MS lesions.  I'm starting to have sleep problems, too.  I've not been evaluated with a sleep study, but find I wake up gasping for air frequently.  I also have what is called sleep starts.  I get these all of the time, now.

I really feel for you, Red.  I hope this CPAP machine helps you feel better.  I have a feeling that will help you.  Waking up even half that many times in the night should feel a lot better, I would think!  

BTW, do you take Provigil?  Maybe with this finding, you will be a candidate for this medicine to help with the fatigue if you aren't already on it and experiencing fatigue.  It has helped me a lot, but unfortunately my insurance won't cover it because it's expensive, and it's not approved for treatment for people with MS.

Keeping my fingers crossed that they find the right treatment to reduce the episodes to zero!

Deb

[RedFlame]

Hi Deb and Summerluvr

Thank you for your words of encouragement.  

I too was shocked at the numbers and had a hard time accepting them, then I went to a sleep apnea forum and found several that were higher.  Not much  higher but it helped to know I wasn't the only one.  And there are people whose oxy levels are considerable higher too.  

If you think you are too tired in the morning then please be tested.  It's been worth it and I now regret putting it off all this time.  

I have heard of Provigil and am going to ask about it when I see him next.  It's certainly worth a try!!

hugs,

Red