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Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 8/28/2009 10:19 AM (GMT -7)   
Hello all,
 
My husband was told by a neurologist that he has CFS. My husband suspected it all along.
Now what? What can he take to make himself comfortable. He is SO sick everyday. We heard pain medications are given.
 
Can anyone suggest what to look into? I just changed his doctor btw b/c his doctor actually lowered his dosage?? He doesn't make sense. I have my own physical problems, but his are worse and have to help him.
 
He was on 30 mg of ms contin 2x a day and no brak through pill. My husband thought the morphine was causing his stomache to hurt so asked to be lowered but when asked to be raised to where he was at, the doctor said no and gave a lame answer. All I am reading is that there is no cure and pain meds are prescribed.
 
Looking for advise.
 

DreamspinnerCheryl
Regular Member


Date Joined Aug 2009
Total Posts : 59
   Posted 8/29/2009 4:49 PM (GMT -7)   
I guess I'm just wondering if such a high dose of morphine is the best treatment for your husband. Tolerance from narcotics is such a big problem, I wonder if he wouldn't be better off with some other form of pain relief. Of course, I don't know the full story here, so I may be way off base, but looks like his (former) doctor felt he needed to back off the heavy meds.

What have you heard from his new doctor? Or, has he seen one yet? I hope someone can help him. Sounds like he's miserable, and in need of something that works.

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 8/29/2009 8:22 PM (GMT -7)   
Thanks for your reply. He is on the lowest dose of morphine made, it doesn't come lower than what he is on. It was the doctor's idea to put him on 30mg 2x a day. It may sound high but it isn't. The neurologist isn't getting involved since our doctor has been treating us both, but to lower him to 15mg (the lowest), after hearing that he had a bad case, made no sense and I wanted to know what do people take for the pain?
 
Do you have it? If so, what do you take? He is beyond miserable and I have chronic pain myself.
 
 
There is nothing worse to see your loved one suffer.
 
Thanks for reading and responding, I appreciate that. I would appreciate any suggestions. If this is a CFS board, any suggestions are welcomed.
 

DreamspinnerCheryl
Regular Member


Date Joined Aug 2009
Total Posts : 59
   Posted 8/29/2009 9:39 PM (GMT -7)   
I have fibro, but so far, I'm lucky to get by with Celebrex twice daily and Xanax plus Tylenol at bedtime. Believe me, I'm grateful for that.

I guess I'm coming from having worked for years in an Ortho/Gastro unit, with so many chronic pancreatitis patients. They tend to top out on narcotics so fast, we end up giving them llife-threatening doses of meds just to obtain some measure of relief. And, I've seen so much in the way of narc side effects-I'm just very, very leery of them, if anything else can be found to work.

I hope your husband finds relief, and hope it will take the form of something less dangerous than escalating narcotics-but, I know he'll have to do what works for him. Good luck!

jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 9/3/2009 9:46 PM (GMT -7)   
Hi Denim, how are you?  I remember talking with you this last winter, that was probably the last time I was on this site, I have been dealing with my illnesses & with Doctors.
 
I am sorry your husband is still not doing well.  CFS is not easy to deal with.  I have been trying to come to terms with it & the Fibro for several years now.  I thought I should be able to fight it & get my life back but now I can say it is better to face facts & come to terms with it.  Yes, like your husband, I have my bad days but I have learned to appreciate the good days.
 
about the pain meds, I agree with Cheryl, the narcotic meds can become a worse problem then the initial illness.  It can cause so much damage physically, emotionally & spiritually.  It may be that your husband can tolerate them well & not become dependent on them but my advice would be to start a little lower before going to the big guns.  Just because it is a strong medication doesn't mean it will be the right med for your husband.  For my pain I take Ibuprofen 600-800mg every six hours.  When my doctor suggested it I thought "what?"  But it has been the best thing I could have found.  Sure there are days I have pain but it is less intense on the Ibuprofen.  You can take Tylenol for breakthrough pain with it.  For some it's Aleve that works, that did nothing for me at all.  We are all so individual on a genetic level that the only way to know what will work is by trying it.  Talk to his Doctor about trying some other things.  There are many levels of pain killers below the ms-contin & morphine.  Also, I am more clear headed & alert.  There is no drowsiness with a lot of the other meds & if I have to be ill, I want to hang on to whatever quality of life I have left. 
 
One thing you might address is sleep.  If he is getting poor sleep, his pain will be greater.  With CFS comes the symptoms of insomnia & unrefreshing sleep.  These seem like little things but they are not.   Insomnia can destroy any quality of life you have, leaving you with depression, pain & a lack of desire to do anything.  Unrefreshing sleep means we don't get into the REM sleep & into the stage after that which is where healing comes in.  When I first went to my Doctor about my insomnia I was dragging & falling asleep all the time but even if I slept 19 hours I felt like I was just so tired, so sick.  MY Dr prescribed cyclobenzaprine (Flexeril) & for the first time in months I started dreaming again.  At first they were so vivid & big & even dominated my waking hours.  I was getting into REM but not beyond.  My Rheumy prscribed Trazadone to help me get into the sleep beyond REM & now my quality of life has gone up.  I always use percentages when I am talking about where I am at living my life, compared to my old life.  Before Cyclobenzaprine it was at about 30%, after I felt it was at about 50%.  Believe it or not, I was satified with that for awhile but my Rheumy said I needed to kick it up a notch & added the Trazadone.  Now I am at 65-70%  That is my high, when I am feeling my best.  My pain is more managable. 
 
I feel so bad for your husband.  I know how hard I have fought against being ill,  how much I wanted my life back & how useless I felt.  I have been through the guilt of not being able to pull my share of the load, my husband has never said a word, it was my own guilt.  Why I should feel guilty because I am sick-go figure- but that is what I thought.  Men, I think, have an even harder time.  I am sure he feels like he is letting you down.  Get the pain under control & he can still have a productive life.  Not the same as before but you never know what doors will open for him.
 
Take care, many gentle & soft hugs for you, my dear.  Denise  

 I have:  Fibromyalgia-dx: 2004, ME/CFS-dx: 2006, Holt-Oram Syndrome dx'd 1975, nasal allergies, food allergies, depression, TMJ, anxiety 

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren

 As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11


craftygeekmama
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 9/3/2009 11:16 PM (GMT -7)   
I don't take anything prescribed for pain because it's not viewed as really bad by my doctors, just tylenol. I should own stock by now.. I am on Ritlian, Amiltriptline, and Valium. The Ritilian is to keep me awake through the day because my ins. doesn't cover stuff that works. The Valium is for vertigo and dizziness. and the Ami is to knock me out. And I can say from experience that as I keep having my meds upped, I top out and it doesn't affect me anymore unless it's a huge dose and I don't like that. Getting enough sleep is my main worry and I don't like the sleeping meds so I just drink Chamomile tea and use a heating pad. I think maybe it's harder for a lot of men to accept being "defeated" because as boys they aren't raised to show "girly" emotions and to take what ever life throws at them.
Jewelrylady-I know what you mean about the guilt,sometimes I feel like that guy in the Greek myth that has to push a boulder up the hill only to see it roll back down at the end of the day. I know I didn't add any advice but I do hope your husband finds some relief- Denim.

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 9/4/2009 11:57 AM (GMT -7)   

Thank you all for your advise. Yes, I remember you, jewelry lady. This is an excellent forum, that is why I come back. He was getting just about no sleep until his dose was upped. He was on the lowest but has the head to toe CFS, which is the worst. I am happy to see him suffer less. Whatever works for you is good. I just like to ask for opinions and the people on here are great and take the time to read your post and respond, even though they may not be well--and I really appreciate and value that.

My best to you all and my thoughts and prayers are for all of you.

Blessings.

 

 


keepingthefaith
Regular Member


Date Joined Aug 2006
Total Posts : 331
   Posted 9/5/2009 10:22 PM (GMT -7)   
JewerlyLady, I just read your post, I hardly am on CFS but I thought I would try cuz its one of my biggests hurdles right now.  I'm a lot like you, however, I have Crohns & a lot of side effects & extraintestinal complications from it.  I am trying to accept all of this, Crohns 25+ yrs can't get past a lot of guilt & reality of myself now.  Was an exrovert now introvert.  Accepting would mean not having faith to be able to live a peaceful life feeling this horrible every day.  I can't take NSAIDS & my body needs many meds including hydrocodone to function.  I hate that fact!   I partyed in my younger yrs to have fun, ironically now need drugs to get up, shower, etc just the basics!  I'm only 46.  Whats my purpose things like that; also the dreams you spoke of..well mine can be so disturbing & can be with me for hours after waking, physically & emotionally.  So many questions some being answered some not.  Really what the heck am I here to do?my passion? The pain isn't going away, is it? I pray for answers & your post gave me some, so thanks for reading while I vented, boy it felt good idea
Dx with CD 1987, 3 colon resections, 3 rectal abscess sx, 2 level anterior cervical neck fusion with plate & screws,6/2008. Major depression/anxiety, kidney stones & sx to remove, now 45 yrs old.  Still trying to figure out this disease & all the little extra complications that come with this rollarcoaster of a life with CD. Meds:Humira 40mg every other wk, Imuran .75 daily, welchol 625 x 3 daily, cymbalta 30 mg 2xdaily, Wellbutrin xl 150mg 1x daily, fish oil, folic acid,Vit B12,inject monthly, Oscal w/Vit D, xanex .5 nightly, Gabapentin 600 mg 3x daily, Soma 175 mg nightly & Tramadol/apap 37.5/325 mg prn, vicodin prn. nsaid patches bursitis hips. Paxil 20 mg 1x daily, weaning cymbalta.
 
         
 
 


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 9/6/2009 11:01 AM (GMT -7)   
One would be very surprised how clear headed and alert you can be on ms contin. I have tried many pain killers and how found this and ultram to be the least in coming down. I remember when I first got hurt, I couldn't even drive a car on flexeril and was super sick on percocet. Yes, I'd love to be on nothing but being in pain all day is pretty unbearable. The ms contin makes my husband's pain bearable. No way does OTC help him. He has a very bad case, head to toe and this med. doesn't make either of us loopy at all. I was more loopy on the others.
Swallow your pride, you will not die, it's not poison.- Bob Dylan 


jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 9/7/2009 11:30 PM (GMT -7)   
Denim, I am so happy both you and your husband can find some relief.  Quite obviously you are not affected like some people can be.  You are very fortunate.  My brother was not & has dealt with both chronic pain & with addiction to prescription meds. for years now.  I know he battles them every day, he sometimes can't figure out which is worse or which is better.  It is a very sad thing.  This is probably why I have a tendency to stay away from stronger meds, also, there is a lot of alcoholism in my family, so I try to temper my intake.  I sure hope things level out for you.  Hang in there.
 
keepingthefaith, I have been a worker & a mover my whole life.  I didn't know how to stop being that way.  I felt like every time I thought I had a handle on one of my illnesses it would come around & slap me in the face & say "Gotcha!!!"  I found myself depressed & fatigued & not caring if I made it out of them again but then I would start all over, trying to find ways to pace myself so I could have a busy life, maybe work again.  Then the rug would be pulled out from under me & I would be flat on the floor again.   I went through the anger stage & then back into the bartering stage of mourning my old life, then back into the anger stage or the sadness stage.  I am now starting to see the acceptance stage up ahead.  This is 2009 & I have been at this for about 5 years.  Several nights ago, I dreamed I was working at my old job, they hired me back & I was so happy.  So maybe I am not so far into the acceptance stage as I need to be.  LOL  If you have some questions maybe I can help some or someone here will have your answers.  Without answers it is hard to be ok with an illness.  So please ask away.
 
You all take care & I hope you are having a pain free day, soft hugs, Denise

 I have:  Fibromyalgia-dx: 2004, ME/CFS-dx: 2006, Holt-Oram Syndrome dx'd 1975, nasal allergies, food allergies, depression, TMJ, anxiety 

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren

 As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11


keepingthefaith
Regular Member


Date Joined Aug 2006
Total Posts : 331
   Posted 9/8/2009 7:56 AM (GMT -7)   
Oh thank you for your reply.  I have many questions, only I'm really the only one to be able to answer them, thats why I'm so confused, like you said, the rug has been pulled out too many times & the hole underneath it gets deeper & deeper each time.  I just don't want to live the kind of life I live now, other than my illness the rest of my life is great, the best husband in the world, 2 loveable dogs & relations with the step daughters getting better every day.  I just want myself to WANT to do things & have dreams, right now its just not there!  Thanks for your encouragement.  God Bless

Dx with CD 1987, 3 colon resections, 3 rectal abscess sx, 2 level anterior cervical neck fusion with plate & screws,6/2008. Major depression/anxiety, kidney stones & sx to remove, now 45 yrs old.  Still trying to figure out this disease & all the little extra complications that come with this rollarcoaster of a life with CD. Meds:Humira 40mg every other wk, Imuran .75 daily, welchol 625 x 3 daily, cymbalta 30 mg 2xdaily, Wellbutrin xl 150mg 1x daily, fish oil, folic acid,Vit B12,inject monthly, Oscal w/Vit D, xanex .5 nightly, Gabapentin 600 mg 3x daily, Soma 175 mg nightly & Tramadol/apap 37.5/325 mg prn, vicodin prn. nsaid patches bursitis hips. Paxil 20 mg 1x daily, weaning cymbalta.
 
         
 
 


jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 9/8/2009 10:00 PM (GMT -7)   
I know what you mean, in my mind I am healthy & make plans & daydream about it & then I say to my body: "Get up & go do it"  Nothing happens.  lol  There is such a disconnect between mind & body.   I too have a wonderful husband, a cute dog, & grown children & step children, all with kids of their own.  I could never be the mother & step mom I wanted to be & now I am not the Grandmother I planned to be either.  But I have found other ways to be these things.  I have taught my Grandson my love of gardening.  Even if I have to sit & just watch, he is learning well.  He also, enjoys cooking & baking, two of my loves & he cooks for his Mom & sister now.  He is 11 & can make the best chicken noodle soup from scratch his Mom has ever eaten.  My youngest Grandaughter is learning to sew & plant strawberries & grow flowers.   On my good days I try to have one or two over to visit but on my bad days & weeks not so much but I talk to them on the phone.  Well, I am just rambling on, I just wanted to say I know how you feel.  Soft hugs, Denise  

 I have:  Fibromyalgia-dx: 2004, ME/CFS-dx: 2006, Holt-Oram Syndrome dx'd 1975, nasal allergies, food allergies, depression, TMJ, anxiety 

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren

 As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11

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