How to cope with the demands of a job with cfs?

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rothko
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/11/2009 10:32 AM (GMT -7)   
 
Hi
I am struggling with getting back to work from 2/3 hours each day to more? Anyone with similar experiences? How do you cope? And any success stories? I would welcome any pointers/advice. My worse time is in the mornings, ranging from aches to numbness whole body and headaches. confused

jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 3/11/2009 7:52 PM (GMT -7)   

Hi Rothco, Welcome to the forum.  I was never able to go back to work.   I struggled with it day after day.  To tired to get up, drug myself out of bed always late, up to 3 hours late.  Then I felt so bad I couldn't stay at work, I would go home & crash.  My sleep was totally unrefreshing.  I felt like I hadn't even slept. 

Over the last couple of years I have been dealing with my sleep issues & my pain & fatigue.  I have found that good sleep is very important without the sleep you will continue to cycle down until your body says "no more". So, do you have a Doctor?  Do you have a diagnosis?  The first thing you need to address is your sleep.  You need to take something for sleep or have a sleep study done or both.  Sleep apnea is a familiar problem to those with CFS.  I take cyclobenziprine (generic Flexeril), a muscle relaxant & Melatonin 5mg Sublingual, both for sleep.  You may find that Melatonin is all you will need.  It may take some time to find the right meds & dosage for you, so hang in there & work with your Physician. 

I take a multi-vitamin, a B Complex for pain & B 12 Sublingual for energy.  The B12 really helps me, I'm not running in marathons but I can do more & have more energy then before.  Sublingual is dissolved under the tongue so it gets into the bloodstream faster.  Make sure you check with your physician before you take anything, even something over the counter. 

I wish I had an answer for you, I wish they would find the reason for CFS & find a cure.  I hope you find some answers.  Hugs, Denise  


 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxietyMarried 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


rothko
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 3/17/2009 12:56 PM (GMT -7)   

Hi Denise

Thanks for the advice. I am quite new to this, only diagnosed last Summer. I am on 20mg citalopram anti depressant. I have been thinking whether I should ask gp to increase this to help with the sleep? Although I am the type of person who prefer not to take any medicine (dont we all!) shakehead in case we get use to it..I found that stress at workload doesnt help with sleep. I normally wait up at least twice every night...no matter what time I go to bed. I am new to the idea of the forum and there is so much information to take in. How long do you sleep on a regular bases? Or is it still fairly erratic? x


jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 3/18/2009 1:46 PM (GMT -7)   
Hi Rothco,
 
I know what you mean, I had never posted on a forum before I was dx'd.  It never even appealed to me but once I started I found it is really helpful to speak with people who also have CFS as well.  There is so much information & I think that knowledge is power.  We have to be very proactive with our illnesses, reading & learning.  I try different thingsto help me & like you, I don't like to take pills.  I have found, for sleep, Melatonin really does help me.  I use the sublingual & about 20 minutes later I am yawning & can go to sleep.  I need the Flexeril to stay asleep.  For the most part I sleep about 10 hours, waking 2 to 3 times & going back to sleep.  Without the Flexeril I have insomnia & if I do finally sleep I will wake up & not be able to go back to sleep.  I also have Fibro so that kinda muddies the waters since that has it's own sleeping issues.  When Fibro is flaring my sleep goes way out of wack & I battle with it for weeks until I get back into a sleep routine.  I can sleep 12 - 15 hours if I need to when I am flaring with CFS but that leaves no room for life.  I try to keep it at 10-12.  I am fairly clear headed & feel pretty good & my pain is less so I have picked quality over quantity.  Surely not the kind of sleep pattern that will let me work but I have finally come to terms with that. 
 
Yes, you should talk to your gp about something for sleep.  Flexeril is not for everyone & it can cause some to feel groggy all day.  There are some good sleeping pills & other medications out there you can try.  It may take several attempts to find the one that will work for you.  Also, you should look into Melatonin, it''s natural & can be very beneficial.  Talk to your gp about it before trying it though. 
 
I hope you can find what works for you.  It takes so long to be dx'd & then even more time to find out what can help each of us individually.  There is not one answer for all.  Take care of yourself & let me know how it is going.  Hugs, Denise

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, 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


rothko
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 4/2/2009 10:03 AM (GMT -7)   
Hi jewelerylady
I've been to the doc and mentioned melatonin, unfortunately the one I see before is no more and he is one of these new trainee doc who just will not give me a straight answer one way or the other. I don't know whether the fact that our consultation was video for his assessment had anything to do with it. He just said melatonin was something to do with hormones...didn't give me any advice about the anti depressant either Just kind of said if your general mood has not worsen...and stared at me most of the time.
 
I tried Kalms for sleep last weekend and it gave me a headache most of the night but no sleep..well at least not until the following morning when I was trying to get up. I will try again this weekend as I dont want to risk any side effects at work. The fact the clock went forward did not help!
 
I have decide to work on the sleep pattern for now and hope for the best..one step at a time eh. Tesco has the melatonin without prescription so that's on the next item. x turn

jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 4/3/2009 11:40 AM (GMT -7)   
Rothco, what a bummer, to get a doctor who is obviously only into himself.  You need to find someone else because there are just as many bad & uncaring doctors as good ones.  You shouldn't have to pay for it.  GRRR!!!  I am so sorry you got stuck with such a bad Doctor.  I hope you can find a new one.  With ME/CFS you absolutely need someone who is up on the latest research for this illness.
 
Talk to your Pharmacist about melatonin, he will be able to help you alot with it.  Melatonin is OTC & he can make sure there are no drug interactions.  I hope you have a good day, many hugs, Denise

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, 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


rothko
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 4/7/2009 3:09 PM (GMT -7)   
Thanks denise
I normally get the new one as it is a large practice where the experence doc is not necessary better! I know because when I had an operation in 2002 I went to see the eldest doc and he was very patronising in his diagnosis, hence the delay in my operation which I suspended was the beginning of my cfs. The funny or not so funny thing was when I was lying in hospital, the patient next to me used to work with him as a nurse back in the 70s and she wasn't too impress either...I couldn't walk for a good 6 months after that because I was so weak.. but that is another story.
It is often easier to see the younger doc and most of them I found to be at least open minded and not pretend they know it all!!
I hope you are having a good day too. There are not a lot of new post recently? x

jewelrylady
Veteran Member


Date Joined Jun 2008
Total Posts : 717
   Posted 4/11/2009 11:04 PM (GMT -7)   
I have noticed that people with CFS or Fibro or AI diseases see their share of bad doctors. What is it about us that makes them think they can treat us so badly? I am so happy I have a good Doctor now & feel I am on the road to feeling better.
I post alot on the Fibro Forum, you should try there too. The people are nice & we have people with Lyme & CFS & Lupus. It is a very busy forum & they are alot of help & alot of laughs too.
Take care of yourself, I hope you are feeling well. Hugs, Denise

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, 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


rothko
New Member


Date Joined Mar 2009
Total Posts : 13
   Posted 4/24/2009 5:45 AM (GMT -7)   

Hi Jewelrylady

I've taken your advice and trying to explore different forums on the web. I've only started joining forums this March because of this illness. Before I don't have broadband except at work and only used the web for work. I know what you mean about finding a lot of advice and support from forum with lightminded people. I've just been told by my O Health that I've had a relapse and is unlikely to fully recover for September (I am a teacher) so part time is the way forward..take care.x

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