CFS

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.

Thanks so much.  

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.

Thank you.

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  

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.