Pacing

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I'm hoping you guys can shed some light on an idea I've had for awhile.  I was feeling really poorly when I was going to work every day and working for 10 hours.  Now I work from home and work only 7-8 hours a day.  I feel better than I did when I was working at the office.  But most days, I still am so tired and in pain that I feel like I am dying.  So I was wondering, if I, theoretically, stopped doing everything, would I feel better still?  Or is there a point where there are no more positive returns on resting. 

I just wonder if I threw myself in a hammock for the rest of my life, would I stop feeling sick?  I am so tired of being sick and tired.  I would just like some relieve from the never-ending suffering.

What do you guys think?

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  • Posted

    Hi Ravenwood,

    I know exactly where your coming from .

    At the beginning I had over a year when I was 90% inmobile. All I can say is that in itself brought me issues like swelling from sluggish lymph fluid building up.

    Vicious circle eh. Very slowly I managed to move around more (a little...no catwheels for me!).. The problem being unable to sustain much physically or mentally.

    X

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  • Posted

    Hi! I recently downgraded at work and now work 2 days a week and begin work an hour later. I feel so much better and I have begun to walk a lot further than I have been able to for a long time. When I'm not working, I have more energy and I go to bed later. When I am working I am tired by 5 pm and sometimes in bed by 7. I still ache and my muscles suddenly go into spasm but my quality of life now is so much better.
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  • Posted

    I personally would not stop doing everything as sometimes it can be hard to restart again. What I did was to find the place where I could do things and not pay the price at the weekends. Once I got my body use to that level of activity I slowly started to increase. The hard part is finding out just how much you can do.

    My GP also told me to take 30min rest periods and I found that helped so would come home from work and immediately test before I did anything else. I am on the road to recovery and it's being in control of how I spend my energy

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  • Posted

    i would work a rotation, 1/4 hour on half hour of 1/4 on etc and roll that on. build it up as you can.. i now do a three hour rotation work, active rest (reading etc) rest, and repeat...
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  • Posted

    Hi

    I think I have spoken to you before!

    I'm tired so off to bed shortly but I would like to talk to you.

    That's a good question you ask.....that I am sure so many people have asked.

    I will get back to you.....I promise.... smile

    Today was the first day in 4 months that I was able to say I am a '10'. Just for a moment, today I felt like me again. It was like being on a high , I would guess; not that I've ever had a high !!!

    Tonight, I am thinking....that was wonderful but don't expect to feel like that tomorrow because CFS just isn't like that . I talk about it as if it's a friend, the irony!!

    A '10' means I have filled my bottle and will be able to follow my usual recent routines but with confidence, knowing that if I still keep to my routines, I will slowly but surely get better. 😍😍😍

    Managing CFS is to do with keeping ahead of the game, mastering the illness.

    I have watched videos of people who have recovered and I have 3 family members who are now recovered too so I have faith in what I am doing.

    Catch you soon

    Jinny

    There is light at the end of the tunnel🎈🎈🎈

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  • Posted

    hi ravenwood. i'd say 10 hours work a day for a healthy person is 'unhealthy'. 7- 8 too much for someone with ME/CFS. the body needs more 'down' time to rest, regenerate & heal. if u keep emptying the reserves, there's nothing left for repair. i woudn't 'not' work as the system would just go into 'reverse' gear & do the bare minimum. a happy medium with lots of rests (lying flatish) factored into the day i'd say is best. guess a 'trial/error/experimentation' approach would help identify a baseline for ur optimal rest/work levels.

    Caitlin.

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  • Posted

    I found extreme pacing essential to improvement. I consider myself recovered but I still have to pace myself or pay a two to three day penalty.
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  • Posted

    I think the only way to know the answer to your question is for you to cut back on your workload and see if that helps.  I think right now your body is telling you that 7 to 8 hours per day is too much. Try half that amount for, say 2 weeks, and see how you feel.
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  • Posted

    Ravenwood,

    I would cut back some more on your work time, possibly to 6 hours of you are able to, or if not break it up into two segments with a break of at least 2 hours in between. I would definitely NOT stop working altogether for many reasons, some of which have been pointed out by others here, i.e., additional health problems brought on by.inactivity, difficulty getting restarted once you're inactive is very very tough, and total inactivity, however fun reading and hanging out in the hammock might be, will not help you increase your energy levels, this I know firsthand. For some reason all the rest in the world, by itself, doesn't help. Also, if you stopped feeling like a productive human being, then you have the added mental crap that goes along with that too. I haven't found the answer, but I can tell you without a doubt that you MUST maintain a level of activity, even though it might have to be significantly lower, I'm thinking 4 to 6 hours of work, or less if you're still wiped out,. I am assuming you've had the usual testing, thyroid, anemia, diabetes, etc.,. Try to eat as well as you can considering you probably don't have energy to cook, I favor stuffing a bunch of stuff ,veggies, avocado, hummus, or meat ,cheese, eggs into pita pockets these days, or quick pasta , etc, .I also really depend on and look forward to my very well placed breaks several times a day for A REALLY STRONG GLASS OF ICED COFFEE OR TEA. I have recently begun Massive doses of vitamin D under the guidance if a Dr.as it was determined my levels were very low, so I'll see how that goes. Something you might have checked though because Vit. D plays are larger role in out health than most Dr's give it credit for. I have also had some relief from joint pain by adding lots and lots of the spice turmeric into my diet. I hope the vitamin D will make a difference for me, if it does I"'ll let you all know. I've been coping with this for 20 years, and the one thing I can say to you, Ravenwood, is do not stop moving, keep trying to do what you do, especially the things you like to do, even if you have to cut way,way back. I think it is just too hard to get back to a normal way of life if you give things up instead of just modifying how much you do. I hope that makes sense. My heart goes out to everyone who struggles with this stuff.

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    • Posted

      Never a truer word Sassylass I have been struggling for 68 years and I still don't know what I have really got! The diet you suggest I also follow, I now know what I inherited and hopefully soon after being tested for dysautomnia I will find out why, that will be the last peice of the puzzle that has been a puzzle to the entire medical profession and I will then explain why I have a POSITIVE ANA all the sicca symptoms since a child, was told I would never have kids at 15, went on to have 1 adopted 4 of my own, the first gave me preeclampsia but my BP and sugar had not gone up until then, nor has it ever gone up, but my son was a cot death except he died crying, now 3 more sons all grown up a fit except they are Hypermobile and one has Psoriasis (I have both) but still don't understand the clear path to my diagnosis which is. primary Sjögren's syndrome, hypothyroid, Psoriasis, PsA, Hypermobility Syndrome, Fibromyalgia and POTS! if anyone has the first problem please PM me as I do know about this. 
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    • Posted

      Pam,

      Thank you for sharing this. My heart breaks for you though, to have so much knowledge but no real answers or solutions. So very frustrating. Let's just keep working towards getting the answers we need and passing on the info we have to others. Maybe the puzzle will finally come together. 🍃🍀🌸

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  • Posted

    If you have chronic fatigue syndrome get your bloods checked, ask for inflamitory markers and a test called a ANA your GP will then have a far better idea of what is causing this
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    • Posted

      Pam,

      Reading your response to Ravenwood, I have had an ANA titre done, and it is EXTREMELY high, but from what my GP says it is very difficult to figure out why it is high as the ANA titre is elevated in many illnesses, and so I am now having to. WAIT, basically, until something OTHER than all of the symptoms of Chronic fatigue syndrome and depression shows up.. I am trying to get in to see a rheumatologist as recommended by my GP, but so far have been told that since everything but the hugely positive ANA and the low vitamin D levels, since the other things are normal they can't help! Sounds pretty crazy to me, yesterday I went for x rays of my hips and knees because I have so much pain, but they too were normal except for some mild arthritic changes consistent with aging. Very frustrating that I have a positive ANA Test, literally 80 times higher than a moderately positive test would be, but no one has any answers as to why. Anyone else know anything about this?

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    • Posted

      Hi Sassylass; Can only help with what I know why/what an ANA test is used for.   An ANA test is basically the first "front-line" blood test taken to give an indication of ?any Auto-immune disease.   From here, the GP needs to follow thorugh with other tests, and using the clinical (what he sees and what symptoms you give the GP) assessments, will work towards a diagnosis.   These titres are usually elevated in relation to many conditions, and I feel that it be best to wait, as you have been asked, for the other results, otherwise you could be led down the wrong path.....please don't let yourself get too stressed, (I know this can be hard, especially if you do have other symptoms that are worrying you, and not sure if you want to discuss these publicly on this forum).  Remember, though, we are all here to help you, and if you feel the  need to further talk, you can Private Message me.   Let us know when the other results come through, and we will be waiting to listen/help....in the meantime a smile for the day, which helps us all....I like the funny faces when I'm a bit low, so sending you one toobiggrin Bron
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    • Posted

      OK then I think you need to see a rheumatologist ASAP! If your GP won't send you change your GP an extremely high ANA titre should never be ignored. I will try to explain what an anti nuclear anti body is. Our entire bodies are made of cells each cell has a nucleus. Your white blood cells are their to defend your body they gulp up germs that get into your body to defend it, either from a wound or from infection. Think of a fried egg the yolk is the nucleus your white blood cells are like paceman the gulp up things. So an ANA is a test to see whether you have an autoimmune disease. This is done in dilutions called titres. With an autoimmune disease the body for some reason turns on itself in my case I think it was measles, with many it is glandular fever. It might be other things but a ANA is to test that your body is eating you up! As the white cells for a reason unfathomed are so greedy they can't stop eating like pac men. They are so greedy they spit out bits of your nucleus the yolk of your cells. The titre is a dilution of your blood. So in the lab the assistant looks for bits of nucleus, if he sees them he dilutes your blood titre of  20 many may have this but they don't have many problems and it will go back to normal. The assistant dilutes again 40 then again 80 and so on until he can't se any 'yolks' your blood. These are the titres. If you have a high titre of ANA you need to see a consultant rheumatologist. If he doesn't think your fatigue is cause by a rheumatologogical problem he may send you elsewhere. If you have dry eyes, mouth vagina swollen glands, you should be seen in rheumatology. If you have had miscarriages the same rheumatology. I do hope you get seen soon 
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    • Posted

      I agree bronwyn but I would have thought rheumatology should be the best place to start. If a rheumatologist can't detect the problem then it could be multi faceted as connective tissue diseases are. 
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    • Posted

      Thank you to Pam and Bronwyn.

      I live in the USA in Colorado, and I have insurance that is not first rate and may be part of the problem with finding specialists who will take me. My titre is 640. I am doing as much as I can to stay moving, and am raising a daughter and keeping a home. Sometimes just barely.I have no support system and on the days when I can hardly move due to pain or fatigue life just seems so hard. But I just try to make sure I can tell myself that I have some something productive, even if it's not much, and that helps. I am reall bugged though, because if the second place my GP referred me to for a rheumatology consult won't take me, I don't have many options but to wait and see what symptoms develop next. I've had CFS for 20 years, but the positive ANA was found 6 months ago and I had hoped for some answers and possibly some new treatment to help all this. Thank you for your advice, all, and to Ravenwood, who began this discussion, stay strong, keep asking questions, and find something positive every day to be thankful for, as should we all do.! 💗

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    • Posted

      Yes Pam, I do think a Rhuematologist will be the answer, but feel that if waiting for all results to come through first, then take all to Rhuematologist....otherwise, Sassylass may have to have  all done again???  It should only be another couple of weeks....and if using the public system, could take longer to get to see one anyway...even in the private system here, it takes 3 months to get an appointment...keep up researching, as I am very interested in Sassylass's history/problems......xx Bron
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    • Posted

      Hi Bronwyn,

      Sassylass here. Of everything tested, my only positives were ANA Titre and a low Vitamin D level. Cholesterol, sugar, iron, thyroid, rheumatoid factor, kidney,liver function all within normal limits. I still feel I need further thyroid testing as I know the average panel is inadequate, and my x rays only show mild osteoarthritis changes consistent with aging, which truly surprised me as I am almost unable to manage a flight of stairs due to knee pain at the age of only 53. I am afraid the second rheumatology referral will be denied. Dr. ordered Celebrex anti inflammatory and that has been denied already by insurance too.

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    • Posted

      I just wish it was possible to really get the "experts" to understand how lousy we really feel and to truly believe how hard it is to make it through the day.
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    • Posted

      Gosh Sassylass; once again we come up with what 1 country does/accepts and another doesn't....Celebrex is "an ordinary script" in Australia....not needing to be covered by Insurance.  

      As for the next comment re "getting the experts to understand"...my trouble is that "I know I put on a good front for everyone", as we all have said, we fear no-one wants us to say how terrible we really are feeling, when they ask....I've only ever really been honest once with my GP (and not really ever with rhuematologist/Orthopod/physio)...when GP asked this one time, I thought "right, I am going to tell him how I feel.  What actually does hurt....what new symptoms I have developed"...he then asked "and what have you been doing to help with these problems?"...I told him my own treatments, and he said "good....keep them up"..whether he noted them on my records, I'm not sure....rolleyesBron

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    • Posted

      💘 the face😕, Bron!

      Don't know what the time difference is, it's 8 A.M. here. I don't know what the problem is with getting the Celebrex , it's probably because of my insurance. I've decided I'm going to just get the joint remedy over the counter stuff called Osteo Biflex, know a lot of people who really like it. My mental health therapist has actually given me the most useful information and seems to realize that my depression is caused by the CFS, and not the other way around. He has placed a huge emphasis in my low vitamin D levels, something my GP did not even bother to address. He said that this deficiency robs you physically and mentally of the ability to function normally and most doctors don't acknowledge or aren't aware of how important it is. I tried taking regular supplements at high levels throughout the day for several weeks but saw no change. My counselor wrote my doc and asked her to consider Vit D injections, but no. She did write script for a 50,000 unit capsule to be taken once a week, so I'm hopeful. It's funny, my mental health professional understands that my symptoms are not caused by my depression, but my M.D. wants to attribute everything to depression. Ridiculous! When CFS struck me I was the healthiest and happiest And most active and successful I've ever been, and almost overnight my energy disappeared, but the depression came much later, and no one seems to believe that. Anyway, today I am going to a salon for a much needed haircut and highlights. I have done nothing to my hair in over 2 years and it is a mess. Decided it was probably as important right now as anything else I could do for myself.💐 Have a great day everyone!

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    • Posted

      Hi Pam!

      Yep, I am from the USA. Now isn't this strange...tried to put the little picture of our flag here and it puts this:🇺🇸

      I wonder why, it has all the flags but won't show them; look:🇫🇷,🇪🇸,🇰🇷,🇬🇧,🇯🇵,🇩🇪,🇨🇳,🇮🇹,🇷🇺....

      Weird! Pam,where are you from if you are willing to say? And by the way thanks again to you and everyone for the input. Pray for the Vit D to be a help. And the salon sure can't hurt! Have a great day!

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    • Posted

      Morning Sassylass...it's 8am here but Sunday....yes, I think most of my health professionals here, that I know, agree that the Depression comes after the fibro/CFS, and is a result of our not being who we were, and not understanding what has happened to us.....for as I have said, when asked that question by one...."No I feel it;s the Pain that's making me feel down"...they have all agreed, and I know that I don't class myself as depressed, but do get emotional from the changes in my lifestyle....the decreased activity/not working/decreased social activity, and yes, when the pain gets really bad...it brings me down at times too.....I'm pleased you are having that hair session....see if they are capable of doing mine while u r there????   Mine needs cutting too...it grows soooo quickly, and it only seems like a few weeks ago that I went (and then had to do it in 2 sessions).....oh how we have To Pace!!.......Bron
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    • Posted

      interesting comment re rapid hair growth bron. i'm totally convinced that my hair grows twice as quickly since i contracted this condition. to keep it ''respectable'' i'd need to have it cut 2 weekly at the v. least . it never used to be like this. perhaps the quality is affected and consequently, it looks raggedy sooner

      Caitlin.

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    • Posted

      I'm not sure....myself and my children have all got the problem re "rapid growth",  but the quality could be something....mine does always look like it could do "with a good conditioning treatment"....I just thought it was an age thing (but am only 57..so not too old).....yes maybe this will be something to question, too????..............Bron
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