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.
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.
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.
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
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...
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....
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.
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.
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.
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.
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
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?
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 too Bron
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
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.
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.
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.! 💗
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. 🍃🍀🌸
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
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.