Chronic Fatigue Syndrome

Discussion in 'The Watercooler' started by flutterbee, Feb 6, 2007.

  1. flutterbee

    flutterbee Guest

    I saw a new doctor on Thursday. She ordered a lot of bloodwork, but said if it all comes back normal then I have a diagnosis of Chronic Fatigue Syndrome. As I explained all of my symptoms to the doctor, we determined it started last year. During the last few weeks I've cycled back into the "always wanting to sleep" phase. No energy. Have to rest after climbing the stairs. Have to put my car in park at a stoplight cause I can't hold the brake. Feeling very spacy. I think I liked the insomnia better. Not only that, but people don't understand CFS. It's not like a broken arm where you can see the problem. It just one more thing for people to tell me I'm doing wrong (you know - the same way we're told how we're not parenting right, thus why we have a difficult child). For any of you that are interested, this is CFS:

    CFS Symptoms

    I have all of the primary symptoms and almost all of the common symptoms.

    Anyway, this is why I've been MIA. I have an IEP meeting Thursday to write the IEP. Talked to the intervention specialist for about an hour on the phone last week. She has a lot of really good ideas. difficult child had some major meltdowns last week. One night in particular I was actually surprised when the police didn't show up at my house cause she was screaming so loud. So far so good this week, but school has been closed because of the cold so that always helps. easy child has been horribly bossy lately, telling me how to parent, etc. One Sunday when I couldn't get up, he came in my room (at 8 am) and was telling me how irresponsible, selfish and lazy I was. I told him if he was going to continue to beat me up then he was going to have to wait til I got up. So after I got up I went in his room and asked him if he would like to continue to beat me up. The kid couldn't backpeddle fast enough. He's mellowed significantly since then. I've also seen the doctor since then and we went to that site above together. That helps. I'm not excusing his behavior, but with so much chaos in the house I know he feels out of control and helpless and he worries about everything.

    I do have to say, though, that I am relieved it's CFS and not depression returning. I don't normally share this, but I have battled depression most of my life and 4 years ago was hospitalized with severe depression (psychiatrist at hospital said I was bordering on a psychotic depression). I have overcome it and actually look at it as a blessing cause after having been through such a severe episode I seemed to have overcome it. I take lexapro, but am very gun shy about it returning. It was so oppressive and took a long time to go away and even longer to rebuild my confidence. I didn't feel like it was depression, but was starting to worry/panic because I couldn't figure out what else it could be. So, in that respect I am relieved.

    I'll be around when I can. Please know I've kept all of you in my thoughts.
  2. Lori4ever

    Lori4ever New Member

    I'm so sorry you're suffering. I am glad they have found the cause. That is the first step. I hope you rest as much as you can and take care of yourself.
  3. Marguerite

    Marguerite Active Member

    Hi, I can sympathise. CFS is difficult to adapt to and it's even harder for family members to accept. Kids who remember a parent pre-CFS are often very resentful of the changes it imposes and will give you a hard time over it. Other kids adapt.

    Depression occurs in about 25% of the population. CFS is more like 1 in 2500. But you CAN get depression with CFS - about 25% of patients with CFS will also have clinical depression! (hey, it makes sense - and it was an Aussie researcher, Professor Ian Hickie, who found this out after laborious statistical analysis). Most, if not all, the other CFS patients will get reactive depression at some stage of the illness - ie they will get totally cheese off and depressed because they're chronically ill and they hate it.

    The best advice I can give you - do the best you can with what you've got and don't let the guilts get you down. Rest when you need to, especially rest your body (but don't overdo the rest - keep as active as you can). If you have an important task coming up - rest beforehand, so you have both the mental and physical energy to cope. Being physically tired will also bring on the brain fog.

    Some days a walk to the front gate will be exhausting. Other days you could walk for miles. So you do what you can and balance it out. Let go some things, work out what is most important and deal with that. Tick off your achievements as you go and give yourself credit.

    Live as healthy a lifestyle as you can, treat your symptoms and be gentle with yourself. Keep stress to a minimum (ha!) or at least try to. Exercise as much as you can without burning yourself out. If that exercise is walking ten steps, so be it. if it's swimming ten laps, great. Just do it regularly to keep as fit as you can. If you have a day when you can't do it - don't worry.

    Some things will make you worse - it could be viruses running around the family, or it could be chemicals you're around. It varies. Not a lot you can do except avoid exposure and live with the inevitable consequences. They will pass.

    Just do what you can. And talk to people.

    And finally, a joke for you, written by a friend of mine with CFS - "What do you call someone with CFS who sleeps for 20 hours a day?
    A: An insomniac."

    Something else this friend did once - he was trying to change the TV station but the remote wouldn't work - until he looked again and realised he was using a pocket calculator. And he was a computer expert! Very embarrassing...

  4. Pam R

    Pam R New Member

    I've had this for 30 years. People do NOT understand, mostly because "you look fine". As you said, no broken arm, etc.

    My son insists there is nothing wrong with me. Mostly because denial is how he copes. But he can be downright cruel at times, as you expressed.

    Most of my extended family members felt there was nothing wrong with me, also. Because of the stress this caused, I cut off contact. If no support was forthcoming, just stress, I could do without it. I HAD to.

    Recent UK research has found 5 (I think) genes that are related to both the disease and stress. These genes do not serve well under stress. So now there is a physical link.

    I know for me, stress is the #1 killer. Reducing stress in my life (with a homeschooled difficult child) has been critical to not becoming bed ridden.

    I also have had severe depression but it's very different from the disease, though they may share symptoms.

    I suppose having a diagnosis now validates you. I felt validated for a short while after diagnosis. Now I wish I had a more visible disease, if I must have one. :hammer: (I really must be careful what I wish for!! LOL)

    My best suggestion would be to make SURE you take care of YOU. As you've discovered, if you do not, you won't be able to care for anyone else.

    I am very pro-active in self care, doing what I need to and getting what I need. No one else will do it. It's the only way I can remain at all functional.

    Things that worked for me: eliminating stressful people; ART (agressive rest therapy); seriously cleaning up my diet and working hard to keep it that way; seriously cleaning up my sleep hygiene and maintaining it; finding and practising things I enjoy (music, outside activities like live music and lectures; gardening; reading; working with pictures). Most of these things I enjoy are sedentary, even the gardening. husband and DS do the walking/standing stuff for me.

    Anything aerobic can cause a serious set back. I use a wheel chair for outside things that require walking/standing of any sizeable amount.

    But I go to the gym twice a week, and do stretching and then work VERY lightly on the Nautilus machines. When I started, I could do 1 rep (NOT 1 set) on 7 of the 14 machines. Over 4-5 months I worked up VERY slowly to 1/2 set (5 reps) on all the machines. This is the most I've ever been able to do over the winter.

    I only go during the winter, to try to maintain what ever muscle tone I have, so I can resume gardening in April. Plus I just do not have enough energy to do both.

    Another thing I'd like to mention is one theory is that things just do not work well at the cellular level. This means, of course, low energy, but for me, it also means the toxins/waste generated in creating energy are not removed properly.

    Because of this the brain is first affected by this build-up (brainfog). But toxins also cause the aches in muscles and for me, mean weird neurological stuff happens. So I try to avoid anything aerobic involving large muscle masses, as these create huge amounts of toxins quickly.

    For me, even large amounts of cognitive work cause brainfog. It all takes energy to happen.

    There are many online support groups out there. Find one that's kind and supportive. Not all of them are.

    And remember, be kind and caring of YOU. :smile:)

    Pam R.
  5. DammitJanet

    DammitJanet Well-Known Member Staff Member

    Im sorry you are looking at this as a diagnosis. I have fibromyalgia and living with it is the pits.

    There is an excellent website and message board relating to chronic fatigue at

    With your bloodwork..did they test you for virals and EBV?
  6. Marguerite

    Marguerite Active Member

    I was wondering about tests as well. One that I recall (it was part of research at the time) was the DTH - delayed hypersensitivity skin test. A large plastic block was pressed hard onto the forearm - it inoculated the skin with a number of common antigens and three days later the test was read.

    Another test (blood test) that was done was a differential analysis of T4, T8 and NK (natural killer) cells - numbers mainly. The theory at that time was that people with CFS had an immune system that was trying to crack a walnut with an atom bomb - initial contact with antigens would result in high reactivity of the immune system (T4s) and a low response of the "let's switch it all off now, job's done" T8s. The NKs were often higher as well.

    Every so often repeat blood tests would be done to check the T4/T8 status. But as I said, this was part of Sydney research back in 1978. The head of t hat team retired a couple of years ago but their work continues. A good thing - from their work, many more researchers have taken on the task. Back in the late 70s there was hardly anyone researching CFS. Then it just took off in the early 80s and more info is coming out all the time.

    I still would not wish this on anyone as a diagnosis. They thought husband had this at one point - husband still hasn't got a definitive diagnosis - but they won't give him this label because what often happens is tat doctors simply stop looking, and other nastier (in terms of prognosis) conditions could still be lurking undetected.

    You've had some good advice so far. But one thing to remember - it's like our kids. We're all different. Whatever your eventual diagnosis the sooner you adapt the sooner you can overcome, to the best of your ability. And adapting is going to involve what works for you. We're all different.

    My diagnosis used to be a variant of CFS. I was heavily involved in support networks but have taken a giant step back (hence my research knowledge is very old). However, I do a great deal more for myself than would be expected - because I've learnt how to adapt to ME. (Sorry - bad pun).

  7. flutterbee

    flutterbee Guest

    Thank you all for the support and information.

    The bloodwork did include EBV, thryoid, electrolytes, anemia, CBC and some other stuff that I can't remember. According the the CDC website, though, they are no longer thinking it's related so much to the Epstein Barr Virus as there are too many variables. They are studying what is called Neurally Mediated Hypotenstion and how that may or may not play a part in it.

    My daughter's therapist suffers from fybromyalgia (sp) and has given me some information on alternative treatments. In one of the pdf files for providers on the CDC website it talks about considering referring patients to alternative treatment as conventional medicine isn't able to provide much relief. It mentions things like accupuncture, biofeedback, etc. Stuff that my daughter's therapist mentioned.

    Margurite - I love that joke! I have felt like such a bum lately for wanting to sleep so much and that made me feel so much better. Thank you for sharing.

    Janet - I will look into that website. Thank you for providing it.

    It's nice to have a place to come where I can find support not only for dealing with my difficult child, but support for myself, too. I've gotten more information from you all about this diagnosis then I've gotten anywhere else. Thank you for sharing.
  8. Marguerite

    Marguerite Active Member

    Neurally Mediated Postural Hypotension - I did a TV interview on that back when difficult child 3 was a baby. I remember, because I had a friend mind him in the Green Room while I did my 'thing'. I was supposed to be there to discuss it from a medical/scientific point of view and after all my trouble to get there all the interviewer wanted from me was "Exhibit A" stuff, I was so angry. (They could have got someone else who didn't have to drive halfway across Sydney, with a baby).
    That would have been back in 1994-5 some time. Probably about May 95, no later. So people were talking about it then - and discounting it.

    The concept - that people with this symptomatology have a problem with their body adapting to changes in body position and modifying/normalising blood pressure with changes in posture or position. It's sort of -"here's another possible explanation" rather than an alternative explanation for what is happening in CFS. They were also suggesting that such patents had too low a salt level in their bodies. At that time we did not recommend people add salt to their health regime without competent medical supervision.

    It is worth checking this out, though. You can test this simply, or expensively. The simple way is to go to your GP and lie down in his back room for half an hour, at least. Get him to take your BiPolar (BP) while you're still lying down. Then stand up, with him immediately taking your BiPolar (BP) again. Some patients feel dizzy when suddenly standing up. Frankly, I don't think this brief dizzy spell could ever be mistaken for CFS. It's like mistaking a splinter in your finger for a broken arm. Mind you, if you HAVE hypotension it's an easy fix. (and for those unsure - "hypo" = low, or under, as in "hypodermic" which goes under the skin. "Hyper" = over). In many cases, a glass of water, especially containing some electrolytes, will work fast. But neurally mediated postural hypotension - it may be a bit more complex to fix, or may involve some level of adaptation. But you should get a neurologist to check it out, not just take some 'expert's word for it. The CFS world abounds with doctors with "revolving door" dxes. Every patient they see comes out that revolving door with the same diagnosis.

    As I was 'so kindly' told some years ago, CFS is a garbage bin diagnosis. It's the label you get when no other label fits. As a result, there is always the chance that you HAVE something treatable and identifiable, it's just that nobody's found it yet. And once they apply the label, a lot of doctors stop looking.

    Another one that has been thrown at us over the years - hyperventilation. We're over-breathing, didn't you know? OK, some people maybe, who get a CFS label when breathing into a paper bag would have fixed it. THAT dates back to 1988. Another one from the UK.

    Then there's the cold bath theory. It too came from the UK, I recall, about 1992-3? Maybe slightly earlier. There was a strict regime you had to follow (and of course you had to send money to get the charts sent back to you, as to how long to bathe and at what temperature). We saw a copy of a paper which published the chart - then the mob that published the chart got sued (or threatened with lawsuit - not sure now). But we'd inadvertently got a copy of the chart - it was no big deal and frankly, not necessarily relevant. We all adapt. The premise was that if you have a tepid, then cooler, bath each day for a few minutes, dropping a degree every few days and increasing by about five minutes a day, your pain levels will improve. Apparently it works for some. Interestingly, it definitely works for MS (which my doctors are now debating could have been what I've had all these years).

    If someone suggests something to you as a possibility, it's always worth considering. But chances are, it's been around before. And if they're offering you assessment and treatment at exorbitant cost - chances are it's a rip-off. We're like arthritis patients - not in immediate danger of dying, therefore ripe for exploitation. I've had some fascinating 'treatments' offered to me over the years. I've even tried a number of them.

    I now keep a very low profile on this topic - I don't even trawl the websites any more, because I kept coming across people I preferred to avoid (past flamers, among others). My own doctors are now focussing on aspects of my condition that do not seem so CFS-like, so as a result I tend to not think much about CFS either. But all that information in my head just won't go away...

    You do need to hang on to your humour and to constantly look for the beauty in your day and in your life. Find a life beyond chronic illness - it is there and worth enjoying every minute.

  9. rejectedmom

    rejectedmom New Member

    I too have been fighting CFS for several years. It is a delicate balance. If you do too much you will relapse if you do too little you get depressed and gain weight.

    Marg, I had gone to a Johns Hopkins doctor and he told me to add salt to my diet and drink alot of water. That was something that was comming out of the research they were doing back then maybe '96? It helped a little but probably because I was cronically dehydrated according to my heart specialist.

    The things that I found that always help me are a vitimin B complex that includes niacin, thyamine, B6 and B12 and a magnesium supplement. The magnesium should not be taken without your doctor's approval. I also meditate and try to get a half hour of fresh air daily.

    It took me about three years to get this under control. I was able to work full time after that but on the days I worked I couldn't do anything else. I would come home and go right to bed. My biggest problem is muscle aches. I feel like I have flu like aches in my large muscles pretty much on a daily basis. I also get alot of spasms.

    I was a very active person before I got this. I am not as active now. I lost a few of my younger friends because I just wasn't "as much fun". They just couldn't adjust to the fact that I was no longer a high energy person. I never gave them a second thought. I have a full life with many good friends. I have enough stamina for the things I really enjoy and that really matter. -RM
  10. Pam R

    Pam R New Member

    rejectedmom wrote:
    > I had gone to a Johns Hopkins doctor and he told
    > me to add salt to my diet and drink alot of water.

    Aye, I was told the same. It made no difference for me. I am also chronically dehydrated.

    > The things that I found that always help me are a
    > vitimin B complex that includes niacin, thyamine,
    > B6 and B12 and a magnesium supplement.

    I also take these things. But for me, never the B's before bed (interferes with sleep) and always the magnesium at night (seems to help a little with restless leg/cramping).

    > I was able to work full time after that but on
    > the days I worked I couldn't do anything else.
    > I would come home and go right to bed. My biggest
    > problem is muscle aches.

    I have this, but it's the cognitive dysfunction that's the worst for me. It got me wondering if the possible toxin overload hits you as aches and me as brain problems?

    > I lost a few of my younger friends because
    > wasn't "as much fun"...I have enough stamina for the
    > things I really enjoy and that really matter.

    We also lost most of our friends and family. But over the years we have "built" our own family and acquire really true friends.

    And I definately agree with doing things you really enjoy and have the energy for.

    Find new things that give you joy or make you smile. Try not to be stuck on what you don't have and get full enjoyment out of what you do. It's not easy, but it's worth the effort, says she that took years to reach this place in my life (no pun intended).

    Pam R.
  11. rejectedmom

    rejectedmom New Member

    Pam, I had cognitive problems for about a year. I could not read for more than ten minutes at a time. That was so out of character for me! I am a voracious reader and have been known to read 500+ page books in a day! I was so frightened that I would not get that ability back but I did. I am a bit more scatter-brained than I ever was when I was younger but I am way less than my husband or alot of my friends so that could be my age too. :wink:

    I am very out of shape now. The garbage my difficult child put me through the past three years really took a tole. I was soothing myself with chocolate and other goodies alot and
    gained qite a bit of weight.

    I had to clear an inch of snow from the allyway and sidwalks around my house and garage today. It was not strenuous just very cold out. I came in and had to sit down for a hour or so. I was so tired. I don't like that. I am currently trying to get my body back into reasonable shape. I went shopping yesterday and bought all kids of healthy food and no sweets! I am watching what I eat again and making a point to walk either indoors or out for exercise daily.

    I fight fatigue actively. Having been an athlete well into my 40's and a very active person for years even after an accident that sidelined me from skiing and windsurfing and skating. The fatigue is often hard for me to accept.

    husband and my family have seen me pass out just walking up stairs so they are very aware of this being real. They know that I would not be sitting if I could be doing something else, Consequently they have no problem with my just sitting around when I need to. I'm the one who demands more of myself. Like I said it is a fine balancing act. I won't let it define me or rule my life. But I respect that it is there and do what I have to do (for the most part) to stay as healthy and active as I can. -RM :smile:
  12. Marguerite

    Marguerite Active Member

    "Balancing act" - you're so right! It starts out like you're walking a balance beam, then you're skilled enough to walk on a tightrope. These days I think I could balance on a razor...

    About weight gain (not that I'm one to talk) - the more you have to carry around the worse the fatigue. And because I'm no longer burning up calories, I've even had to tell hospital dieticians where to put their advice (I gained weight on their reducing diet because they made me eat more than I already was). So you learn to make your own adaptations (with medical supervision).

    It's funny how this illness hits people who used to be high achievers and physically active. Unless we're the ones who really notice the difference?

    I must admit, a lot of doctors advise patients to not sleep during the day, but I cope a lot better when I DO catnap. I long ago gave away the guilt about catnaps because they recharge my batteries. Sometimes I do feel groggy for an hour or more after I wake, but when the energy kicks in (what there is of it) it lasts me longer than if I hadn't napped. I just plan my day around the times I need to be active - in the evenings and with mealtimes. I've even written my recipe book with planned rest breaks. That way I can be resting while a pot is simmering on the stove, or bread is rising.

    Being out in the cold - it can help, but if you're out long enough to start shivering you have to recognise that your body is working hard and you will feel fatigue and muscle plain as a result. I find my main aim through winter is to not shiver. And I've even checked my temperature - I no longer shiver, unless my core body temp drops below about 35. It's like my body has learned to avoid shivering, too. I'll feel cold and put on warm jackets, but the shivering doesn't start until my temp is almost too low to register on the thermometer.

    We had a good cartoonist who did a lot of great stuff on CFS. One of my favourites was a short strip - patient in hospital bed, surrounded by doctors saying, "We've done extensive, exhaustive research and combed the world and at last we've found the perfect doctor to treat your illness." Then they stand aside to reveal a witchdoctor in full mask, regalia and rattles.

    These days I'm the witchdoctor.

  13. DammitJanet

    DammitJanet Well-Known Member Staff Member

    One thing with CFS and Fibro is how exercise seems to make things worse. They will tell you to do it but it kills me. I have arthritis too which makes it harder. If I attempt to do any type of exercise program I will be in the bed for a day or two. Walking around stores can put me down too. I have been known to collapse in walmart. That is embarrassing. One time I simply slid right down the pole! My hips gave out while waiting for the rest of the family to come back to where I was waiting at the front of the store.
  14. Marguerite

    Marguerite Active Member

    I think the trick with exercise is to stay within your own limitations. I'm rare - I don't suffer from after-effects if I over-exercise, I just collapse. My body just won't do it. Of course there are the usual sore muscles for days, but everyone gets that (just maybe from a bit more exercise than I can manage). But I've known others to have a really great day, say, "I can do this," then overdo things badly and put themselves back to bed for a week or more.

    I've found that the best exercise for me is walking. I walk as far as I can manage on that day, and usually wait until the day is mostly over, so I don't use up energy my family could benefit from. "As far as I can manage" might be 10 yards or 1000 yards. But I do what I can, reaching to JUST BEFORE my limit. I haven't been able to run for years. I only swim short distances, counting strokes. I've barely got to ten this year. Last year I could swim 60 strokes at a time.
    Standing is awful. It's much more tiring than it seems. I've been known to sit on the floor rather than stand. I no longer care if I'm in a shopping centre - if I have to sit, I'll sit. Getting back up is tricky, but I crawl over to a solid object and slowly pull myself up. If a shop assistant gets tetchy about it, I point out that I wouldn't have to sit on the floor if they provided seating.

    I heard a great analogy once. Where most people have a full jug of energy, we don't. It's like we only have half a jug (or less). The amount we have in our jug will vary from day to day and we can't always see into the jug - we have to judge by how heavy it feels.
    When our jug is empty, we can no longer do anything that day. So we have to ration our energy so we can spend it wisely and put it to good use. But since we will get more energy the next day, it is good practice to have used up almost all the energy by the end of the day.
    Trying to use more than you have - you end up scraping out the jug. This will eventually wear holes in the jug and it will then leak, not even holding your daily ration.

    So we go carefully. Use up most or all of our ration of energy each day and it makes it easier to be sure we'll get a similar amount next day. Don't do too little, don't do too much.

    I met one bloke who got CFS and put himself to bed. His wife waited on him constantly. OK, I was jealous, because I had nobody to wait on me. But he commented that I needed more mechanical aid to get around than he did but yet I managed to get things done; after the conference we were both attending, he realised he needed to become more active - he had taken the concept of "rest" a bit TOO far. Meanwhile, I've met others who genuinely can't get out of bed. I coincidentally was talking to one woman this afternoon who needs constant care and has had to use a walking frame since she was 20. She has been described as "the worst case of CFS I've ever seen" by several specialists. She now has severe muscle wasting due to her long-term inability to exercise. We had to cut our phone conversation short because both of us were getting too tired, just holding the phone. I could hardly hear her - she has little power in her voice. But she forces herself to do things like go out with friends for a cup of coffee, even though the effort of even walking a few steps will put her in bed for days. She needs help with basic care and even gets tired just trying to eat.

    Some people get CFS and mentally put their lives on hold, waiting to get better to resume their lives. This is not a good idea, because meanwhile life is passing you by. You may recover and find you're years older with no life skills. But if you use that intervening time to do something with yourself and for yourself, you have still grown. My friend from this afternoon took up art, working in pastels on her good days. The colours were helping her mood a lot and she would then write a short note in the card and send it to a friend. She listens to the radio (we have a network that reads to people, ideal for the blind as well as those who can't hold a book or newspaper) and keeps herself up to date with news.

    It all comes down to balance again.

  15. Pam R

    Pam R New Member

    That's one thing I've not lost, being a voracious reader. I still read a lot, sometimes more than others. But what I HAVE lost is retention. I retain very little of what I read.

    This has it's up side. It means I can reread books after 2-6 months and have no idea how they end. This also applies to videos. So with the extensive library (5000+) and large vid collection, I'm never without something to read or watch. :hammer:

    About 12 years ago I put on a ton of weight, as I slid deep into depression. But finding the food program and sticking with it for years has taken most of the weight off. I put on a little in winter, as I'm not as active. But come spring, it drops off.

    Having had this since childhood, I never was an athlete, nor very active. But I have seen many fight it, and crash. The ones who work with it, who honor their body and it's limitations, seem to do better.

    So if you can get your mind around that, it relieves the stress of "what you've lost". When I got so bad, I could finally have a firm diagnosis, it took me a couple years to do this. But I can say, having reached this point, it's worth striving for. :bravo:

    Pam R.
  16. Pam R

    Pam R New Member

    Marguerite wrote:
    > It's funny how this illness hits people who used
    > to be high achievers and physically active. Unless
    > we're the ones who really notice the difference?

    I've often wondered about this. It did seem to more often be the case. But a lot of my contact with others with this has been online, and maybe it's this type of person who is more apt to be online, seeking info and connection.

    Regarding sleeping during the day, I sleep if I must, but mostly try to rest sitting up, if I can. My sleep got so bad, so messed up, that I would go days with 1 or 2 hours sleep in 24. I know several people who have a hard time with their sleep, and are not careful about sleep hygiene. They know this makes them worse. They can go either way, sleeping all the time or not at all.

    As far as body temp, I've never been able to regulate mine. If it's below 70F, my body and brain literally shut down. If I must be out in the cold, I dress in many, many layers, and wear heavy Sorels with big tread to keep the contact with the ground minimal.

    I do okay in high temps to mid 90's, but after that I need help with body temp. If I start to sweat, I know I'm in trouble, as for me, that's not regulating my temp but indicating I'm much too hot and going into heat exhaustion.

    It's odd how different we can be, with this disease.

    Pam R.
  17. Pam R

    Pam R New Member

    Marguerite wrote:
    > I think the trick with exercise is to stay within
    > your own limitations. I'm rare - I don't suffer
    > from after-effects if I over-exercise, I just collapse.

    I did that the first day at the gym, even though I had stopped on my own. Sort of alarmed the person who was teaching me about how to use the machines. :smile:

    Standing is awful also, which is why I was soooo glad to be gifted a wheelchair in 2000. It meant I was much less housebound and could attend things I'd not been able to before.

    But when I've been caught out without it, I've been known to just sit on the ground, if I need to. I no longer stand til I can't, I just sit, thereby honoring my body's limitations.

    > Where most people have a full jug of energy,
    > we don't. It's like we only have half a jug
    > (or less). The amount we have in our jug will
    > vary from day to day and we can't always see
    > into the jug - we have to judge by how heavy
    > it feels.

    I had found a posting called "The Spoon Theory". And it has to do with having so many increments of energy to spend, "spoons", and how you use them and stockpile them. It was written by a person with Lupus, but was very accurate for me. I saved it and have given it out sometimes.

    Holding the phone is exhausting for me, and our phone company will give you a hands free phone for free with a doctor's recommendation. It's really made a difference for me.

    I agree that you should not give up. One of the things we have learned is how to create a new life that's full, within our limitations.

    I went from running a boarding stable, growing enough food for a year, raising and homeschooling my son and actively pursuing a frugal lifestyle, slowly to closing the stable, closing the garden, closing many flower beds, losing old friends and family and sending my son to school.

    We learned to create new friends and family, new hobbies, resumed homeschooling, and learned new ways of eating and caring for myself and exercising. I learned new ways to find and see joy. And I learned a LOT about navigating the system so we could survive on SSDI. :bravo:

    It's about being given a lemon and making lemonade. :rofl:

    Pam R.
  18. rejectedmom

    rejectedmom New Member

    I find I do much better in the summer. I can be more active. I do not go outside between 10:30 am and 3pm when it is the hottest. I usually spend that time working on hobbies inside in the airconditioning which I keep at about 78 degrees F. I have to say I do miss the endorphines I used to get from a hard physical day at play or work. I think that is where my almost constant craving for chocolate comes from as does my weight gain. -RM
  19. Marguerite

    Marguerite Active Member

    Pam R, another joke from my CFS friends in Sydney:

    What's one of the good things about having CFS?
    You can hide your own Easter eggs.

    My involvement in 'the scene' was before the 'Net was big. But there were other ways for people to search for information. And someone who HAD been physically active who suddenly found themselves not coping was often the sort of person who wouldn't be fobbed off by, "It's a virus, you'll be fine in a few weeks."

    RM, the chocolate cravings - I've found a couple of things that work for me:

    1) Compounded chocolate is NOT good for you, according to all the experts. It's compounded with low-budget highly saturated fat (often, coconut oil or copha) which has little relevance to chocolate itself. So try to avoid it. Instead, go for quality - get a product which uses no other fat than cocoa butter. It costs more, but you should crave it a lot less. I also go for dark chocolate (an acquired taste; I worked hard to acquire it) which goes a lot further. When I buy a block of chocolate, I break it up into small squares and try to only eat them one at a time so I can really savour it. I keep telling myself, 'a small amount of good chocolate has vital amino acids and promotes natural endorphins.' NEVER get a block with soft centres because you can't break it up easily without the centres running everywhere (and then you have to eat it to be tidy!
    So always remember - pure chocolate, especially dark chocolate, is good for you, in small amounts. It's like a daily health pill.

    2) If a block of chocolate has no lasting power in your home, have you tried chocolate-coated coffee beans? I find I can only eat a very small number but like good dark chocolate, the flavour hit lasts for hours. You feel like you've indulged heavily, on a small amount.
    husband is into 'bullets' - chocolate-coated licorice bits - which are probably also full of good things (aminoglycosides, for example).

    So, choose your weapon in your fight for good health! And get rid of guilt - unless you still eat a whole block of chocolate in a day!

    And if you're that much of a chocophile, be glad you're not in Australia, being tempted by Tim Tams - we have a range of these yummies, but the basic biscuit is a sort of butterscotch rectangular biscuit (two of them) sandwiched with chocolate ganache and then the whole thing dipped in milk chocolate. We have dark chocolate versions; chili chocolate; double-dipped; caramel-filled; choc biscuit choc filling; I think they even have mint ones now. We'd heard wonderful things about Oreos and occasionally someone would smuggle in a packet which I saw from a distance but never managed to taste. Then they released Oreos onto the Aussie market! Wow! We bought two packets, found them to be quite pleasant, then went back to eating Tim Tams. One Aussie TV presenter gained a vast amount of weight then made a splash on TV by losing it all - she'd given up Tim Tams. In her chubby days, she said she could eat an entire packet at a sitting. And it's a common trivia question in Australia - "how many Tim Tams in a full packet?" A: 13, in the normal ones; 11 for the double-dipped.

    We get around the problem by not buying them except for special treats. If we only have healthy food in the house, there is a limit on how much rubbish we can lay our hands on.