Newly diagnosed and trying to figure out this "pacing" thing

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Demismom, May 26, 2013.

  1. Demismom

    Demismom Member

    I keep reading that I'm supposed to "pace" myself and not overdue it. Well yesterday I did a little light housework, a load of laundry and helped my husband with the flower garden. All I did was spread the mulch around after he dumped it. To me, that was a lazy day, but this morning I feel like I got ran over by a truck, over and over again. My hands, feet, back and muscles hurt! I've been officially diagnosed with post viral pain syndrome. I can't find anything actually called that and when I type it in cfs and fibro keep popping up. Is this the same thing? Which is it?

    Anyway, I'm 45 years old and mom to a very active 9 year old daughter and married 25 years to a very supportive man! How do I know I've done enough, in physical terms? I felt ok and wanted to do more yesterday, but was afraid to.
  2. mbofov

    mbofov Member

    Hi Demismom - It sounds like CFS (or maybe FM) to me. I have CFS and have learned through experience that I am limited to around 3-1/2 hours of light activity a day - otherwise I crash ("post-exertional malaise" (PEM), the hallmark of CFS) the next day. I would think that with something called "post viral pain syndrome" you would have pain all the time, and not after overdoing it.

    Even when I feel good and have energy, especially then, I have to stop what I'm doing when I hit that invisible wall - otherwise I pay for it the next day. This is the curse of CFS. My day generally ends by 1:00.

    I did post the other day about a supplement called Moducare (see http://forums.prohealth.com/forums/...re-for-immune-system-pem.262796/#post-1763421) - I have trouble with immune system, get chronic sinus infections and Moducare is helping. But it is also supposed to help with something called "delayed onset muscle soreness" (DOMS) which afflicts athletes who overtrain. There are some similarities between DOMS and PEM, both may be caused by an inflammatory response to exercise. Look at the link above if you're interested. I am trying to see if the Moducare will help with crashing, as well as my immune system. I also started taking a systemic enzyme called Sorenzyme which is also supposed to help with DOMS, and again, I'm hoping it will help with PEM, though too soon to tell. If you have questions about this, first read the link I posted here which explains it better.

    Best wishes,

    Mary
  3. Demismom

    Demismom Member

    I should clear up that I have pain all the time and tramadol does help, but only for about 3-4 hours. I'm trying not to take too much pain medication but today I couldn't go without. :(. Right now I work 6.5 hours, but when I get home I barely have energy enough to cook. I'm getting more and more tired by the day, and just don't know what to do. Do I keep going until I can't anymore, or do I slow down and hope not to get as sick as I've heard and read can happen.
  4. mbofov

    mbofov Member

    Hi Demismom - I misunderstood. It sounds a lot like fibro, which I don't have, but many people on this board do and hopefully one of them will jump in with their thoughts. It sounds like you're wondering how long to keep working, or worrying that if you keep on the way you're going, you will just get worse - is that correct?

    I had to quit work due to CFS 12 years ago - I did push as long as I could and used to wonder if I might have made more of a recovery if I had not pushed so hard. It's a good question.

    This board recently changed its format and for some reason traffic on the board has declined a lot, hopefully it will pick up again as people get used to it.

    Mary
  5. IanH

    IanH Active Member

    Hi Dimismom,
    I agree with Mary that it sounds like you have fibromyalgia. (Some doctors are calling this something different but basically it is the same syndrome). Fibromyalgia can also occur with ME/CFS but the fact that you can work 6+ hours per day sounds like you do have a mild version of the syndrome.
    Even so, it is important not to overdo it, especially as you do work. It is possible that by overdoing physical activities your widespread pain will worsen. What other symptoms do you have? Normally FM has a number of symptoms besides pain? It is typical of this syndrome for pain to worsen many hours after the exertion. This is because the immune system becomes over-involved in the strain caused by the exertion and fails to stop it's involvement for many hours or even days.

    For this reason taking supplements that "modulate" (meaning to keep the system operating at a normal level) your immune response can be helpful.

    Good immune modulators for pain are:
    Vitamin D3
    Magnesium (such as magnesium glycinate or threonate or even citrate)
    Zinc
    EPA (which is an omega-3 oil. normally coming in conjunction with DHA. (The more EPA in the mixture of fish oil the better)
    If you are having digestive tract problems with the pain then probiotics in combination with bovine colostrum is helpful. There is much evidence that a disturbed digestive tract (diarrhea, gas, bloating and stomach pains) worsens widespread pain.

    It is not only physical exertion which can worsen the pain.

    Make sure you avoid foods with glutamate in them (ie. MSG type flavour enhancers) as they will worsen your symptoms. Also ensure that you are not hypersensitive to various chemicals that will also worsen your symptoms, such as petrochemicals and pesticides as well as the formaldehyde group typically found in new carpets and particle board building materials.

    If you find that you affected by them then the following can be helpful:
    NAC (N-acetyl cysteine) or sublingual glutathione
    Ubiquinol (CoQ-10) or ubiquinone if your budget can't afford ubiquinol.
    These are also normally accompanied by folate, such as methyl folate.

    This set of supplements help to eliminate toxins. (There are many others but I am pointing out those which dovetail well with the other items mentioned above).

    It is very important to find time to relax deeply during each day. Equally it is important to improve the quality of your sleep as poor or inadequate sleep will worsen your pain.
  6. Demismom

    Demismom Member

    My vision has changed, I now have to wear glasses to drive. Not every day, but some days I'm so exhausted I feel like I pass out. I just can't move I'm so tired. The pain is mostly limited to my hands and feet, but there are days I can barely get out of bed because my hips hurt so badly. My knees sometimes hurt and walking up one flight of stairs does me in, my legs gets so tired I can barely go back down them.

    I am vitamin d deficient and am back on 50,000 twice a week for a month, then I'm to take 2,000 daily. I had taken 50,000 twice a week for three months. My level went from 9 to 24. :(. I was really hoping the pain was simply from that.

    This all started in December after a trip to New York City. I got sick with Parvovirus B19, really really sick, and haven't been right since.
  7. IanH

    IanH Active Member

    Hi demismom,
    I am afraid that the dose of vitamin D you are on is not sufficient to raise your vitamin d levels enough. The highest level you said was 24 ng/ml but this is still an inadequate level for what you need. Because you have an illness you will be losing vitamin D quickly. The US Endocrinology society recommend a blood level of 40ng/ml and the Vitamin D council recommend a level of at least 50ng/ml. To achieve this level you would need to take 10,000IU daily for at least two weeks followed by 5000IU daily. After 3 months your levels could then be retested and if you have gone above 50ng/ml then you could possibly reduce your levels to 3000IU daily but I would recommend staying at 5000IU. If you could only reach 24ng/ml with 50,000 twice weekly then you may also have a problem converting your vitamin D to 25(OH) vitamin D, which is what is measured in your blood. If the vitamin D was D2 (not D3) then this may also cause an inadequate rise in levels.
  8. Summer123

    Summer123 Member

    As a person with a "Type A personality", pacing is a term that didn't exist in my vocabulary until I was diagnosed with Fibromyalgia. After I was no longer bedridden, it took my quite a while to know when enough was enough. In addition to having to learn how to pace myself, I also had to lower the expectations of my family members, especially my husband.

    I learned a very valuable pacing technique from the Fibromyalgia Clinic at Cedar Sinai, in Los Angeles: Time every task and take a break in between each task. Example: If you do one hour of laundry, be sure to take a 15 o5 30 minute break before your next task.
  9. IanH

    IanH Active Member

    Demismom:
    as you said " I just can't move I'm so tired"
    You may benefit from sublingual B12 (methylcobalamine)
    Pain itself is very fatiguing but you may also have ME/CFS as it is often the underlying illness causing fibromyalgia but is often not "diagnosed" when pain is the main presenting symptom.

    Summ123 makes a very important point about pacing, which involves mini breaks throughout the day and not to allow activity to be continuous.
  10. GeminiMoon

    GeminiMoon Member

    It sounds like classic CFS. Please do not keep going until you can't do anymore or you will end up flat on your back. It's best to take it slow even though it can be extremely frustrating. You will eventually learn what works for you and what doesn't. This illness is really about learning how to manage it. And it can be done. Don't give up!
  11. Mikie

    Mikie Moderator

    What worked for me was to do 1/3 of what I thought I could do on a good day. It's hard to stop when you still have energy to do more but I found out you pay for it for days.

    Love, Mikie
    Jodielee72 likes this.
  12. mayville

    mayville Member

    Hi Demismom,​
    If I can do 2 loads of laundry a day, I'm happy. If anything else needs doing, I don't do the laundry! If I feel good on any particular day, I really have to watch myself 'cuz it's so easy to overdo. I've also found that stress and emotional days will set off the pain and exhaustion. I usually go down for a nap sometime between 11 and 12 and sleep for 2-3 hours. I can never guarantee how I'll feel afterwards, but the nap is always needed. It's very hard to hold yourself back, especially when things need to be done. It takes awhile to adjust, but you have to remember that you're going to hurt if you do too much.​

    mayville​
  13. Jodielee72

    Jodielee72 Member

    I no how you feel I have 2 kids plus hubby work 7 to 10 hr shift work this all started from glandular fever 3 yrs ago and has hot way worse ... I've gone from working 3 jobs training in boxing so very fit to trying to hold down one job every clp of months I need to take 2 weeks off I just can't push myself any more and learning how to pace wots that when you have a home to run but I don't have and social life now I sleep to I need to work go to work come home cook cream sleep same thing every day some days I can't even make it up to bed because I have stairs I feel so lazy and a failure as a mother and wife that's what kills me the most
  14. phyllisengle

    phyllisengle Member

    Demisimom,
    I can relate! I have FMS and CFS. I have 4 kids and have a husband along with 2 dogs. I think as women, sometimes we expect more out of us than everyone else. I am still trying to figure out how to pace myself also. I feel "lazy" if I don't get "enough" done. There are some days where I am so exhausted (usually after a day of over doing it). I was once Vit. D deficient. Just had my levels re-checked (along with my thyroid) and everything was perfect. THEN WHY AM I SO FREAKING TIRED?!?! I have learned it is a "fibro thing" as well as a CFS thing (obviously). I'm trying to gain employment and I keep asking myself how can I get a job when I'm like this???

    Long story short, I don't have an answer on pacing. I think it is a work in progress for everyone. When I was Vit. D deficient, I took 10,000 iu a day. Plus a multi vitamin AND lots of almond milk. I hope you find something that works for you, and I hope you find the key to pacing yourself! :)
  15. Cherita.md

    Cherita.md Member

    This is like shangrila for me. Just knowing there are other people who have these same issues as I do. Sometimes I get really down & feel worthless bc I can't do as I used to do, but that happens less & less. Before I got sick I never sat still. I attended school partime, full time job, son, husband, house, 4 or more days at the gym running, weight work & swimming basically always busy & doing something. It has taken me over 2 years to adjust my thinking & habits. I'm still working on it. I am very very lucky as I have a VERY supportive husband & very supportive 10 year old son & a very cute little doggy & they all help take are of me & the house stuff. I do as much as I can bc that's my personality but have learned I HAVE to be careful & always mindful of the things I do & rely on careful planning so that I stay more on an even keel. At first I was like a yo yo bc I tried to live like I did before I got sick then would sleep for 3 days & stumble thru. It's been very hard to adjust but now I can see some of the pluses! I enjoy things more. I don't over commit & rush thru every thing. I have gotten into sewing & cooking (as health permits) which I wasn't interested in before so I still have a creative outlet while taking care of my family :) I've met & become friends with a lot of supportive women thru a sewing group. My life is so different from 3 years ago!