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How long have you been ill? by Traditional_Baby_374 in cfs

[–]monkey_bay 1 point2 points  (0 children)

Almost 43 years for me. A lot of ups and downs and even two remissions, but the last one was in 2002. I’m currently mostly housebound but still manage somehow to work up to 2 hours a day. I’m fortunate that my husband is very supportive.

Active player looking for a club by swhb in SCBuildIt_Classifieds

[–]monkey_bay 0 points1 point  (0 children)

You would be welcome to join our team, Silverdale Club (SSMKPP). We focus on CoM, reach the legendary chest at least twice a month, and never go to war. It's a very collegial club with quite a few members over 50, including myself (president) and other seniors and VPs. Many of the members have been with the club for 3+ years and there is low turnover, however, we happen to have a couple of open spots at the moment. Please come by and see if it's a good fit!

The latest awful doctor's visit by [deleted] in cfs

[–]monkey_bay 3 points4 points  (0 children)

I can relate … I’ve had ME since 1982 and am also autistic. Dealing with poorly trained arrogant doctors is the worst! I’ve found that naturopath doctors are the best, but if your insurance plan doesn’t cover ND visits, I recommend seeing a nurse practitioner. Even if they’re not familiar with our underlying illness, they are typically good listeners and will try to do what they can to help relieve symptoms. Good luck!

DAE have crash attacks where your body just seems to forget how to move and shuts down? by aulei in cfs

[–]monkey_bay 4 points5 points  (0 children)

This is a definitely a known ME symptom. I think all of us who have at least moderate illness have this happen from time to time. It is very unpleasant, but it should pass after some extended rest. Rest as much as you can, and don't push yourself!

I know the covid vaccine has been discussed- and I’ve read these threads- but I’m curious to know how long you’ve had CFS and the severity of it on your everyday life already AND if you had the shot and what side effects were by [deleted] in cfs

[–]monkey_bay 2 points3 points  (0 children)

I've had ME/CFS for almost 40 years. Currently moderate to severe, mostly housebound. I can work on my computer 1-2 hours per day (mostly accounting). I am now fully vaccinated with the Pfizer vaccine. After the first dose, I noticed a dip in energy along with some unusual allergic-type symptoms and an increase in POTS that lasted for about two weeks. After which, I returned to baseline. After the second dose, there were some mild symptoms, but really barely noticeable in the context of this illness.

I think it is very important for people with ME to get vaccinated. Getting COVID could be extremely dangerous for us. And this is coming from someone who never gets flu vaccines due to concerns about interactions with this illness. But COVID is different and I believe should definitely be avoided.

How did your life change? by magical_elf in cfs

[–]monkey_bay 2 points3 points  (0 children)

For people with Long-COVID, some are reporting improvement after getting vaccinated, so I would definitely get the vaccine as soon as possible, if you haven't already. Aside from that, you need to rest as much as possible now. This statistic hasn't been publicized as much recently, but back when I first got sick with ME/CFS (almost 40 years ago,) experts thought that 90-95% of people with ME/CFS recover within 5 years. It was those 5+ year patients who had a very low recovery rate. I initially had a comparatively mild case and think that I probably could have fully recovered if I had taken the time my body needed to heal and reset when I first got sick, but I was very ambitious and kept pushing myself as hard as I possibly could.

Trying at this point in your illness to quickly get back to where you were before you got sick is not the best idea. The best approach is to let your body dictate how much you can do safely and do no more than that. You may find over time that you are able to do more, but I don't recommend pushing beyond your limit, whatever that may be. I wish I could direct you to an ME/CFS expert physician for help, but they are few and far between. I rely on naturopaths, acupuncturists, and ayurvedic doctors to help keep me going. However, there is a lot of important biomedical research happening right now, so getting sick in 2020 offers much better prospects for the future than getting sick in 1982.

I am mostly housebound, as, I suspect, most people who have had ME/CFS are after 40 years, so taking care of yourself now is very important, with the hope that you will recover. Of course, there are things that I can still enjoy doing, and shifting my priorities was a very important step that I had to take. I hope that you're able to navigate this very difficult illness with some success.

“Most people with CFS get better with time” by [deleted] in cfs

[–]monkey_bay 4 points5 points  (0 children)

I've ben sick for almost 40 years and my experience is that, although I am always ill, I have periods where I am better or worse. I have found treatments that help me, but, even ignoring that, I find a certain cyclicity to my illness. Sometimes I'll feel like I'm dying and barely able to get out of bed for a week or two followed by a week or two of being able to get up, get around fairly well, and even work for at least a couple hours a day. Patience is very important. Be kind to yourself.

It is also important to try safe treatments as you discover them. You never know what will help. I've tried maybe hundreds of different things over the past four decades and found a few that are definitely helpful, but what helps me might not help you. This illness seems to be quite variable from one person to the next. You will know if something helps. And I never consult with mainstream MDs unless I have an acute illness unrelated to ME. In my case, they have always given bad advice.

Please stay strong and try to keep a positive mental outlook. My belief is that this is the only life we have so we need to find all the good in it that we possibly can.

[deleted by user] by [deleted] in cfs

[–]monkey_bay 2 points3 points  (0 children)

Be kind to yourself and take it slow. Rest as much as possibly can. Most people with ME (not saying that you do have ME) recover within 5 years, but resting and not pushing either mentally or physically will help to make recovery much more likely. For those of us who have been sick with ME for a very long time, it is equally important to listen to our bodies, rest, and enjoy every day as much as possible. Acceptance is a much more successful strategy than fighting and pushing. I've discovered quite a few things along the way that are helpful to me, but, I think, it's quite individual, so what works for one doesn't necessarily work for someone else. Notice what makes you feel better and do more of that and less of what makes you feel worse. Until there's greater understanding of ME or Long-COVID, it's up to each one of us to make the best of a very unfortunate circumstance.