Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Possible Remission. What now?

Discussion in 'General ME/CFS Discussion' started by marpet, Feb 10, 2016.

  1. marpet

    marpet

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    Hello there. My CFS started recently on exactly 29th of October. After a sudden vertigo attack it all began. In the beginning it was very though: severe insomnia, POTS, huge brainfog, bouts of fatigue (mostly late morning-afternoon hours) and problems to walk more than ~1km per day. Now, some months later, in which I mainly rested (was in a hospital for 6 weeks to treat my insomnia) I feel I am in remission, because my only problem now is a little bit of brainfog (10% of what it used to be). Still, I am pretty sure that I really have CFS and not something else, because it started suddenly after a period of severe stress and I fulfilled most of the Canadian Criteria: 4/6, everything else than pain and 6 months duration. Also, my sister and my uncle have CFS, so it seems to run in my family.

    I'm back to work for a few weeks now. MY colleagues are very kind and understanding, though they think it was depression or something alike. What should I do to make sure that my improvement lasts?

    Edit: I don't dare to do sports, so I can't tell about that and my lymph nodes are stil swelling every day.
     
  2. PennyIA

    PennyIA Senior Member

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    Just make sure that you listen carefully to your symptoms and try to pace as well as you can. I definitely have been through the remission/relapsing and can work while I'm in remission. But I've done everything possible to organize my life and my situation as much as I can to reduce effort and manage expectations. I.e., there will always be a dirty dish and a little bit of picking up needed. But I can keep it semi-tidy and I can hire the lawn and snowblowing done. I've swapped out carpet for hardwood floors since they are easier to keep clean. etc.
     
  3. lansbergen

    lansbergen Senior Member

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    I think take it easy is your best chance.
     
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  4. caledonia

    caledonia

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    Pace yourself. If you find something is making you worse, stop and rest. If you still have swollen glands, you're not out out of the woods yet.

    Make sure you have short term and long term disability coverage, just in case. Assuming you're in the US, you can purchase a policy through your work which is covered under a federal program called ERISA. You can also purchase a private policy which is outside of ERISA.

    You should be automatically paying into Social Security Disability (the FICA tax taken out of your paycheck).
     
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  5. Mij

    Mij Senior Member

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    @marpet my sudden onset stared Feb 1991 with a severe vertigo attack too. I did not have swollen lymph nodes, brainfog, pain etc at that time, just a mild sore throat and ear.

    It's possible you might have EBV from what you describe. Have you been tested? I think I have a reactivation of EBV in the last 10 months, swollen lymph nodes and dizziness which feels quite different from my initial onset 25yrs ago.

    I agree, don't overdo and no exercise.
     
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  6. marpet

    marpet

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    @caledonia: I live in Germany.

    @Mij: No, I have not been tested for EBV. Wanted to, but the doctor said there is no reason to test it...
     
  7. Get a new doctor.
     
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  8. caledonia

    caledonia

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    When I was first getting sick and still able to work, I went to the doctor and part of the standard lab testing was the Epstein Barr titer. They never told me this was elevated. They never told me to rest. Within several months of trying to work and push through I became disabled. I found out about 9 months later from my good doc who diagnosed me with CFS what that test meant and he also found a thyroid problem all the other doctors had missed.

    That was 15 years ago. I'm still disabled and mostly housebound. I feel that if I was able to rest aggressively at that point maybe I wouldn't be as bad as I am now. Nowadays they do make anti-virals and perhaps this is something which could be tried?

    I think my whole bout with Epstein Barr reactivation was at least six months, similar to when I had mononucleosis originally. I remember low fevers, being super achy and fatigued. My feet and ankles hurt really bad. I think I did have some off and on swollen neck glands during that time - and this was really weird, my jaw joints swelled and I couldn't close my mouth.
     
  9. Mij

    Mij Senior Member

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    @caledonia there was a time during my illness (around 12yrs ago )I had reactivated HHV6 and EBV from taking immune modulators and was not told either. I only found out when my doctor retired and I was forwarded my medical records.
     
  10. caledonia

    caledonia

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    Makes sense. It is my understanding that reactivated viruses are a symptom of an immune system which is not working well.
     
  11. I didn't think to mention this before, but when I first got sick I was tested twice for mono. The tests are crap and both of them came back negative. A few months ago, doctors who specialize in CFS ran proper tests and found out that indeed my EBV infection was reactivated.

    Like Caledonia, I believe that this is not a cause, but is rather an effect of an immune system that is not functioning properly.
     
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  12. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    When I came down with CFS in Dec 1990 I had made the switch from being a medical lab manager to being in a float pool, i.e. someone who covers vacations and sick leave for other people. I made the switch when I was 100% healthy and never could have known that it would help me since working a full-time job would have been out of the question. Over the following two years I had several relapses which I blamed on working too many days in a row. Even though on average I was only working three days per week, it was still too much for me.

    Here is what I found. If I worked two days in a row, I didn't relapse, but if I worked three or more days in a row, I had a viral relapse and had to stay off work for weeks or months at at time. After I shared this information with my supervisor, she told me she would schedule me however the hell she wanted, even though it was ruining my health. My last day of work was in Sept 1992. I came down with another viral illness from which I never recovered.

    My advice to you is to keep track of how many hours a day you are active, i.e., not resting. At the end of the day tally how many hours you were on your feet and how many you were sitting. Of course it will be easier on your body if you can sit, but even the mental effort to work will take a toll on you. My point is, you are at risk for relapsing simply because it happens to everyone, and you may not lucky enough to buck the trend. If you can look back at what you were doing prior to relapse, you might have an ah-ha moment and realize you exceeded your limits in some way.

    Don't do anything additional on the days you work, such as laundry or errands. Be sure to get enough rest every night. On the days you don't work, don't overdo activities. Set a limit (in hours) for what you do on your days off. Schedule rest periods on your days off if you find those helpful. You might try resting before lunch and dinner.

    I hope you are lucky enough to avoid a relapse. If you do relapse, take it as a warning sign that it could keep happening over and over again until you are too sick to recover at all. That's what happened to me - I never recovered from the last relapse.
     
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  13. taniaaust1

    taniaaust1 Senior Member

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    "Now, some months later, in which I mainly rested (was in a hospital for 6 weeks to treat my insomnia) I feel I am in remission,"

    If you have swelling gland issues still, you certainly shouldn't consider yourself in remission. You could flare back up any time and maybe even worst then previous. You need to keep looking after yourself well and be prepared to take time of work if you ever feel yourself getting sick.

    I had a full remission (no symptoms left at all) after previously being bedridden and severe but a few years after remission caught like a common cold virus going around and ended up with ME again which I didn't recover from again. I went to work with this common cold.. and triggered all that off. I really should have rested though I thought I was okay.

    It sounds like the great treatment you received (I'm so surprised to hear they put you into hospital for 6 weeks) helped. Most of us get our symptoms ignored when we first get sick and just don't get the rest we should do and then end up in a worst place due to this.
     
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  14. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    While I do agree about the pacing, you might take a couple of minutes to jump up and down with joy. :star::balloons::heart: Good luck with maintaining your remission. :tulip::bow::cake:
    It is encouraging to hear that prompt treatment did you so much good.
     
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  15. justy

    justy Donate Advocate Demonstrate

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    I had a long remission lasting approx. 8 years, to almost well, only to be hit with measles and become severely ill, bed/house/wheelchair bound.

    Last year I discovered I have Lyme, three co infections, leaky gut, severe immune disruption, from a specialist in M.E. I have now also discovered that these kinds of bacterial infections can lay dormant, evading the immune system, until another insult wakes them up (like the measles) then they have an opportunity to overwhelm the immune system. I wish I had known when I was first sick, 20 years ago that I had these bacterial infections and I could have treated them then and lived a better life.

    I also have family members who have ME (my biological mother, her niece and my daughter, who has now been found to have Lyme).

    I suggest a thorough work up by someone experienced in ME/CFS, to get to the bottom of your issues - if you have swollen lymph you are still not pout of the woods. I thought after a couple of years of being able to function almost normally that I was completely cured and did all sorts of reckless things, but the thing that got me - the measles, I couldn't have stopped happening.

    Also great news that you are feeling better!
     
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  16. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I missed the part about your lymph nodes still swelling every day - that's not a good sign at all. You are still very sick if that is happening. However, I know that when you feel you are able to work, that is what you do - you go off to work.

    Seeing a naturopath to help clear your lymph nodes and strengthen your immune system should be a priority ASAP. They might also recommend seeing a massage therapist to do some lymphatic drainage, but I have no experience with that. A naturopath helped me a great deal in the early years of my illness when I was having chronic sinusitis and fever.
     
  17. marpet

    marpet

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    Update: months later im still feeling well. And I am so happy about it! :)
     
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  18. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    And I am so happy to hear it! :D As, I am sure, many here are. Once we start getting prompt diagnosis and treatment, this disorder may take a different course.
     
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  19. powertool4

    powertool4

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    Can I give you some advice? I was in remission for 3 years. and I was getting better and better and better and physically looked good (Started working out etc.) but also meant I got a lot more confident in my body's abilities to endure things. I was REALLY REALLY sick and I kind of left it all behind and started eating junk food, pushing hard, doing contact sports because I didn't want to live life on the sidelines with a fear of "What if I relapse?". Well I pushed too hard and now am in a bad relapse.

    Its hard to remind yourself to remember the bad times because who the hell wants to remember that stuff? But that's the only way you keep yourself in check. My plan for the future after i recover is to take 1 month for every 3 months, to live completely detoxed and restricted diets, supplements, everything I did to recover. It'll be a break from the fast life by being aware and consciously choosing to live a detox month every now and then.
     
  20. panckage

    panckage Senior Member

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    For this hasn't worked. I've found that matching my activity level to my condition has given me the best results. Doing too much gives a sudden decline but 'taking it easy' for me, leads to me slow gradual decline (general deconditioning I guess)
     

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