What are ME/CFS signals that help you to know when to stop?

Discussion in 'Homebound/Bedbound' started by Soul*, Apr 12, 2014.

  1. Soul*

    Soul* Well-Known Member

    This is just a thread to list signals you have identified that help you to prevend going downhill in health because of pushing to much.
    I know everyone is different and we can't prevend everything but by posting what you have recognized as a signal to be extra aware it may help others to become more aware of possible triggers too.
    I am fully aware that we can't controle everything that happens to our health but any little bit we can, is worth sharing and might be of use to others.

    There are specific signals I get that clearly tell me I either already overdid or have to be carefull not to overdo and I was wondering what are those signals for others who have ME/CFS?

    It might be helpfull to get a better view at what signals to listen to to help us stay stable.

    Oh and I'm very aware that we all are different and what is a red flag for one may not be a red flag for someone else. And relapses or worse days (weeks, months, years) may occur regardless of how well we pace. Still it is interesting to do our own research and to share what we learned along the way to stay balanced as much as we can.

    Red flags when I have to be super alert and step back a little:
    Bowel movement
    : It will stop. I'm not always aware of it but if a day went by without it I know that I'm living on the edge. As if the body is saying if you deplete to much of my available energy I'm not going to digest anymore.
    Crossing my legs: When I'm in bed and I notice I'm crossing my leggs, or in other words supporting one leg with the other I know I'm in a danger zone.
    Tensing up: Sometimes I notice that I'm tensing up some muscles unnecesarrily. I think it has to do with the body not sufficiently regulating the warming of the muscles when the energy is low.

    When I have overspended my energy:
    Dreams:
    I will recall my dreams and it will usually be dreams about trying to find a place to rest. Or trying to find a way to transport myself. Having a lot of people around me who all seem to have more rights to that place.
    Grumpy: I will get a bit of a grumpyness out of the blue. Not consiously related to anything I'm doing.
    Heavy: Things I will pick up will seem twice as heavy as normal. A very awckward feeling as if nothing is the same anymore.
    Pain: Once I am in pain I have overspended for sure. I have lived in constant pain for years but now I'm usually doing pretty well and can manage it sufficiently by not overdoing.
    Sleeplessness: Once I'm over the edge even though so exhausted I will have a hard time sleeping.

    I'll get back to this when I think of more things. Wonder what signals there are for you all, that help you to know when to stop and when to go.
    Last edited: Apr 13, 2014
  2. TigerLilea

    TigerLilea Active Member

    I stopped pacing myself a long time ago. I figure life is too short to waste and I'm going to use up every ounce of energy that I have, when I can. Pacing never helped me feel any better and I'd get frustrated wasting time resting. :mad:
  3. Soul*

    Soul* Well-Known Member

    I'm sorry to hear you have not found a way that works for you TigerLilea. It took me years and years to find and accept a way that works for me and I'm still learning every day. If I don't pace myself I spend months trying to recover back to the point that I was before the thing I did and suffer every moment. For now, if I do take enough steps back, I found I can enjoy much more of my life and stay emotionally stable at least and deal better with what the body is presenting me. Each of us are different and sharing our experiences can only help to understand more of that.

    With this thread I'm just hoping to hear more signals that people have identified, to learn what helps them cope and prevends relapses for them, and to share that with others so it may be helpful to some to identify triggers we where'nt aware of yet.
    Last edited: Apr 13, 2014
  4. gb66

    gb66 Well-Known Member

    I can't do much of anything anymore but I have to remember, I've had this for 35 years and also have other chronic conditions.

    The only thing I have to watch carefully is emotional stress. I have to be very careful not to get into any situation that is overly stressful or my pain increases by about 50%, sometimes more.

    There was a time, many years ago, when I did what you're talking about and paced, but now I'm just sick every day, all the time.
    It has been progressive for me. I have CFS and FM both.

    I used to be able to work some, go to college part-time, grocery shop as long as I didn't have to carry the groceries. I could eat out in restaurants, walk in the mall, go on vacations as long as I rested a lot. So I do understand pacing very well at some point in this illness.

    I have to use a wheelchair now to go to the doctors. I don't go anywhere else, it's not worth the pain. We really all are on different paths. Or no path at all, sometimes. :) My path is my recliner. The bottom line for me is that it doesn't seem to matter what I do (physically) anymore, I feel pretty bad whether I've done nothing that day or tried to do a little.
  5. Soul*

    Soul* Well-Known Member

    Gb I hear you, sorry you haven't found a way to pace that is still helpfull to you. I was at a point where nothing seemed to help for years and years and was in constant pain and had to use a wheelchair and could not even hold a pen and such and only got worse and worse too. I'm still sick every day all the time too, it's not that I'm not and I'm still mostly home and bed bound but I'm lucky to do feel some improvement by finding the right way to pace for me. So I'm hoping to find more ways with this thread.

    I had to pace way more then I ever thought I would have to pace to get to the point where I finally started to improve a little again. I'm not trying in any way to make a statement that this is the way to go or will work for everyone, I know it's not, I'm just trying to learn, since I have postive results with it and hope to learn more, but from the reactions I worry that it seems that people feel offended by it, or feel the need to defend themselves and that is in no way my intention, nor the intention of this board. I'll try and rephrase the title.

    I am only hoping this thread will help me and maybe some others to recognize more triggers or red flags to be able to make life less complicated. It's not a statement, it's an open research kind of thread to share what works.

    This thread is for what works for indidviduals not as a general. Only you know what works and doesn't work for you.

    A few more things that help me identify I'm pushing to hard:

    Eyelids: when they droop over that to me is a sign I'm more tired then I am aware of. My enthusiasme is usually way bigger then my energy is but if I stop before the signals show me I have to stop, I have more moments in the day that I am able to do something within the homebound bedbound range.
    Forehead: If the lines on my forehead get deeper I know I have been working to hard to try and concentrate on something when actually to tired to do that.
    Last edited: Apr 13, 2014
  6. gb66

    gb66 Well-Known Member

    Soul, Pacing does work in the beginning, or it did for me. But after a long time it stops working. This has been my experience.

    The first year I was very, very ill. It came on suddenly like a viral infection. Devastating. I slowly built back up and was able to do more after the first year or two. Then, I felt if I just keep pushing, I'd keep improving. I had started college part time and wanted to finish.

    It took me 7 years to complete a 2 year degree. I really don't think I made myself sicker by pressing on. I did pace myself, got lots of rest. If I had it to do over again I'd do it.

    After the first 10 or 12 years I started to get sicker. I finally had to quit working and stay home. It helped for awhile and I started getting a little stronger. Then, somewhere about the 20th year of CFS/FM, I started to go downhill again.

    We are all so different and may not even have the same disease.
  7. Soul*

    Soul* Well-Known Member

    Gb it's clear we all have such a different experience and are all different.

    Pacing did not work for me in the first at least 10 years or so.
    So I'm happy and feel very fortunate it DOES work for me now after all those years of overstressing the capacity of the body.

    This thread is no statement about whether pacing does or doesn't work, it's simply a means to collect possible signals that people with ME/CFS have recognized as a flag to stop, that has helped them to deal with life better. No more then that.
  8. gb66

    gb66 Well-Known Member

    Soul, I do remember having a few signals years ago. I'd get very tired and out of breath. I guess my main signals were pain related. My back was/is in very bad shape. When the pain started getting so bad, I knew I was overdoing it.

    I also remember that when I was in college I would have episodes of blood pressure fluctuations. Usually it would go up high, suddenly, but sometimes it dropped. I had to leave my car at at school many times and call my son to drive me home.

    I was 40 years old at the time. No college kid, but I loved it. One of the best experiences I've had.

    I don't have relapses anymore, I just stay sick. I don't know why things have changed so much. I guess part of it is aging and also having other illnesses to deal with.
  9. Soul*

    Soul* Well-Known Member

    I might wel be misusing the word relapse... English isn't my native language.... it doesn't mean I have times when I don't feel ill... it just means I have days/weeks/months that I drop back in health even more untill I finally recover to the point I was before doing a certain activity.

    Gb yes I'm sure aging and other illness will have their effect too. I have noticed changes in having a harder time to recover from backdrops too and I suspect hormonal changes have to do with that in my case. Still I'm hopefull to learn more to be more aware of what I can do to prevend falling back simply from listening to and taking notice of the signals my body gives me. I'm not done learning yet :D
  10. windblade

    windblade Active Member

    Hi Soul - one of the symptoms that shows me I'm overdoing is pain in my chest area. A heavy feeling there. And also getting out of breath, which I have a lot more of lately.

    Then the best thing for me to do is just stop, and lie down. I find reading lying down is calming, and helps me replenish my energies. Also deep breathing helps.

    Have been sick with CFS for over 20 years, and then having mold illness on top of that is taking a toll.

    I've found that juicing with various veggies and a chunk of ginger has been excellent for digestion, and reducing inflammation in the stomach, intestines and muscles. I could never manage juicing without my husband, he washes the veggies, as well as shops for, and cleans up after:) I just peel and chop.

    GB - that is so wonderful that you went to college when you were sick! What were your favorite areas of study
    ?
  11. gb66

    gb66 Well-Known Member

    Soul and Windblade, When I started college I didn't realize how sick I was. I thought I was just recovering from something, maybe a virus.

    Everyone, including me, thought that when I got back on my feet and got active again that I'd gradually get better, like I was before it hit.

    But that didn't happen. I continued to get worse. It was a gradual worsening. Then, after I finished college and quit working, which was about 10 years into it, I started to feel some better.

    I thought it was due to my slowing down and resting more, having less stress. For awhile I was able to pace myself with my day to day activities and was doing okay. As okay as someone with CFS/FM can do. :)

    Then, even though nothing else had changed, I started to go downhill again. I felt like it was almost starting all over. No matter what I did or didn't do, what changes I made, I still got progressively worse.

    Then, 3 years ago, started to develop other illnesses too.

    Soul, Your definition of relapse is a good one. I remember when I would have good days and then a few bad ones, then, the good days got less and less and the bad ones increased. Now I never feel well enough to do anything but a little cooking.

    Windblade, I studied business, mostly computer and medical terminology courses. I did do work in a school for the disabled and then a hospital after finishing school. I originally studied psychology years ago.

    Sorry this post is so long. I got carried away. I was thinking maybe we should have another thread on here called "Introduce Yourself". We could say as much or as little about how we became ill and the effect on our life, or not post at all if we don't want to. What does everyone think? GB66
  12. Soul*

    Soul* Well-Known Member

    Why not gb, any thread that can help to give researchers detailed information could be so valuable. Normally I would be very careful in posting details online but on here it seems to make sense to be as detailed as possible so that hopefully one day those who may not be posting here but are reading along for research purposes can make more sense of it all. Normally when visiting docters or following treatments they don't really have time to actually listen to details nor do we have time or the energy to be clear enough to share all the details that might matter but on here we can go back and edit and put in new findings and such that could all be helpful. If not for researchers maybe for people like us who find recognition.

    I do also find that lately I have a harder time recovering from activities even though I don't feel that bad during the activities. I am suspecting that it has to do with pre mennopause for me that is taking a greater toll of the body. So what you share could well become a reality for me too, time will tell. Untill it does I'm hoping to try and find more triggers to recognise to prevend that downfall if at all I possible can.

    Windblade yes I try and use ginger frequently too. Sometimes I just make a cup of 'tea' with a slice of ginger few drops of lemonjuice and pepermintoil. Especially when immumesystem seems to be low.
    Last edited: Apr 14, 2014
  13. TigerLilea

    TigerLilea Active Member

    Soul, I personally don't think that looking for other people's triggers in yourself is a healthy idea. We need to live our lives as best as we can while living with CFS. If you are so focused on symptoms all of the time you end up keeping yourself in "sick" mode and don't live your life. You'll start thinking that every little thing that happens to you must be a CFS symptom and go into protection mode, even though it probably had nothing to do with CFS and was just a normal event that most people go through on some days. I try not to focus on symptoms whenever possible and just get on with my day. Some days my symptoms scream at me and have to be heard, but that is just temporary. I don't go through a mental check list each day to see what's going on. If something isn't right I'll know it soon enough. :)
    Soul* likes this.
  14. TigerLilea

    TigerLilea Active Member

    I forgot to add that my symptoms did get a lot worse since going through peri and now post menopause. My doctor doesn't think that my CFS has gotten worse - just that menopause is adding more problems to the mix. She thinks that once my hormones have finally settled down that the tiredness I experience will disappear along with the hot flashes. I sure hope so because I have never been this tired in all of the years that I have had CFS. It's a totally different kind of fatigue than what my CFS fatigue is. o_O:(
  15. jole

    jole Member

    Soul...I'm glad you've found signs to go by, and that pacing helps you. It helped me for a few years also, but not any more, and I honestly can't even give any signs.

    GB...your story makes me cry because it's so closly related to mine, and I want to thank you for posting your symptoms. The erratic blood pressure, pulse, and breathing symptoms are causing me a great deal of problems right now also. I've had all the heart tests and nothing shows, so it must come down to the FM/CFS. Like you, I only leave home once a month for doc and groceries because I don't have the energy to do any more. And I've found the hardest thing about all this is having a 'lack of purpose' in life.

    My kids want to come home for Easter, and already I'm haing panic attacks. I can't tell them no, but on the other hand don't know if I can do it. Years ago it was because I wasn't sure if I could get the house clean and meal made. Now it's because I don't think I can handle the noise or being up that long...I've given up worrying about the house and meals. Stress comes now from one simple change in my day. Just no energy for it anymore.

    It's amazing that the same illness can effect people so differently; and that something that helps one causes another to get worse. I do think pacing in the earlier years of this is a good thing, and probably slows it down a bit for some people.....or at least makes it more managable to still have a life. It did help me until the past few years also.
  16. gb66

    gb66 Well-Known Member

    Jole, I'm glad to see you again. I have talked to several others on here over the years that have had similar experiences to the ones we have had. How long have you been ill with this?

    I think, for some of us, that the years we've been ill do add up. It is because of aging, other conditions that may arise, but also because in some cases CFS/FM is progressive. We don't need a medical panel or case studies to tell us this, we live it! :)

    I became ill at age 38 and was probably in peri menopause at the time. As menopause approached though, I felt better. I had always suffered from severe PMS, so this was a relief.

    I had no meno. symptoms that I could identify, I just felt all the CFS stuff all along. After meno., I still had the really bad migraines for a few years that I had with PMS, but they gradually got better. I still have mild ones at times, but nothing like before.

    Menopause was one of the best things that ever happened to me. Seriously. I wish it had happed a lot earlier. :)

    Here's my experience with my grown kids. I had to stop going to family functions several years ago for the same reasons you mentioned. Plus, I also have MCS and could no longer tolerate the perfume, after shave, candles, air fresheners, etc. that were present at gatherings.

    They didn't understand, but I had to hold firm. I told them it wasn't because I didn't WANT to, it was because I COULDN'T do it anymore. It took them awhile to get used to it but I had no choice. Neither did they. :) GB66
  17. gb66

    gb66 Well-Known Member

    TigerLilea, I agree with what you said about us thinking that every symptom must be related to CFS FM. I ignored some symptoms in 2011 that were not CFS, and I thought they were.

    I was feeling very, very, tired. Much more than usual. I went in for a physical and found that my sodium and potassium were so low I had to go to the ER.

    My doctor had thought I needed an IV for sodium replacement but the ER doctor thought it was from the diuretic I took daily.

    They kept me overnight and my levels went back up just by not taking the diuretic that day. My doc never even thought it could be the problem. I was told that a very low sodium count could be really serious. Never knew that. GB66
    Last edited: Apr 15, 2014
  18. gb66

    gb66 Well-Known Member

    Soul and others, I was thinking that we could do the "Introduce Yourself" thread for the purpose of sharing our experiences with each other. I think it might help us all to know each others experiences, symptoms, diagnoses, and the length of time we've been ill.

    Also, how did the symptoms start and what you were doing when you became ill. What does everyone think? GB66
  19. Soul*

    Soul* Well-Known Member

    Tigerlilea very good point! I totally get what you are saying about not looking for symptoms and not copying other peoples triggers as your own, and yes am very aware that we can support our own symptoms by being to much aware of them. Or feel sick all the time and stop leading a life because of them.

    The point where I am coming from however is that I survived by totally going beyond whatever the body was giving as signals since there where way to many anyways and the body was constantly in a scream mode and I just stopped listening all together. I stopped identifying with the body to such a great extent that I just pushed on but health declined. I'm coming from a life of constant pain and discomfort 24/7 not even being able to hold a pen just because I had no clue when to stop and when to go. I don't know about others but I can only share my own experience but for me goes when I start to 'feel' I pushed to far I'm way beyond the point that I will be able to stop my health declining greatly for weeks or even months. Being aware of the subtle signals in advance helps me so I will not push on untill my body screams. And will be able to stay balanced with a little more rest instead of months of being so sick and ill that I'd rather not live. Or actually not even more rest since pushing to far will throw me of for months so it even saves me loads of time and definitely has increased the quality of my life tremendously so that I can actually live my life not feeling sick all the time. The problem with PEM is that I can't tell beforehand if I pushed to far since the result will only presents itself a day or so later. Becoming more aware of subtle signals has helped me a lot to reduce that occurring. Stopping before I feel the 'need' to stop is possible one of the hardest lessons for me to learn :p, but the most rewarding one for sure.

    The signals I found I didn't find by specifically looking for them but simply by after a long time keep finding myself do or notice the same peculiar things. It is the not knowing when to stop that made me much more ill then needed for years and years. So I AM interested to find out about others, not to apply them all to myself but maybe to recognize some more things that do apply to me too and can help me to prevend greater suffering. I still keep finding out new and helpful signals in myself and wouldn't mind speeding that up a little. I don't have to go through a checklist for them I just recognize them when they occur.

    But yes it's very good to warn people not to become to illness consious since that won't help either. If you do or feel better by ignoring signals, by all means do that. However if you do improve as much as I have and can feel much better and way less ill and stop a lot of unnecesarry suffering by being aware of subtle signals in advance so you won't push to far but can take rest before you have gone to far then do not let anyone stop you by doing that. I didn't lose time by resting in time, I lost a lot of time by pushing untill the body forced me to. Do what works for you and find your own indidvidual path. Learn from others but don't become a copy thinking that what works for others will work for you. Find out for yourself and go by that.
    Last edited: Apr 16, 2014
  20. gb66

    gb66 Well-Known Member

    I think it's great that we can share our experiences with each other. We can take what we want from other people's experiences and leave the rest.

    We all walk a fine line between feeling better or worse as each day progresses.

    I know, for me, what works on one particular day may not work the next, in fact, may never work for me again. It's a constant walk of discovery, trial and error. There are no absoultes. GB66
    Soul* likes this.