Chronic Fatigue Syndrome

SufficientRichardVerve
SufficientRichardVerve Posts: 18 Member
edited December 19 in Motivation and Support
I have chronic fatigue syndrome (CFS) & C-PTSD, looking for support from those who understand. I'd describe what it's like, but it takes too many spoons. 😂

Replies

  • Opalescent_Topaz
    Opalescent_Topaz Posts: 132 Member
    Smh.
  • KAIASGRAMMY
    KAIASGRAMMY Posts: 2 Member
    I too have ME/CFS, along with Fibromyalgia and Idiopathic Hypersomnia. I had bariatric surgery and my health has gone downhill. I worry about losing my job--have to take off work if I do too much. Still haven't figured out how to calculate what is too much...
  • Bopo_Amy
    Bopo_Amy Posts: 19 Member
    I have a chronic health condition as well and understand invisible illness. If you want to have some support and work toward wellness with me friend me. I can offer support.
  • chattox
    chattox Posts: 19 Member
    Someone that knows the spoon theory 😊 here if you need to talk.
  • Silkysausage
    Silkysausage Posts: 502 Member
    Get your thyroid levels checked 😉
  • lmacke2019
    lmacke2019 Posts: 2 Member
    I also have fibromyalgia and CFS. I am new to the community thread but here if anyone wants to talk.
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  • rabblescum
    rabblescum Posts: 78 Member
    Also facing a daily spoon deficit. Trying to get back in the swing if things with a daily uphill battle. Add me if you like.
  • angelexperiment
    angelexperiment Posts: 1,917 Member
    😚 hiii! Well I don’t suffer this particular thing I do suffer chronic pain that takes me out on my days off usually bc I uses all my spoons for work! Sometimes too many 😕 I just feel like how can I succeed if I can’t work out? Bc when I attempt to it’s very painful and then I flare for 3 /4 days after. But I just have the mental desire to stick with it even if it’s just diet bc I’m all about that and discover whether this way of eating will affect inflammation at all.
    Maybe I should introduce Myself? My name is angel.39, I have advanced osteoarthritis due to congenital hip dysplasia in my hip and knee. I’m due to have a total hip replacement in June. I started to lose weight for surgery bc it will help me recover better. So far I’m down from 230 to 213.4. I just started back on mfp 15 days ago. Getting in habit of food logging, prep etc. I’m attempting to establish long term weight loss and maintaining. I’ve lost and gained many times in life, as I have struggled since childhood. I know in order to have my hip replacement last longer I’m gonna have to keep my weight down or risk it failing in a few short years so that is my end goal.
  • yirara
    yirara Posts: 9,986 Member
    If you don't take anything with added vitamin B12 then do get your levels checked. Both CFS and Fibro are often misdiagnosed B12 deficiency, which can have the same symptoms. The blood test is only kind of reliable though if you're off all B12 supplements for at least 4 months. Also worth asking for all previous blood test results with ranges as doctors' knowledge on this is notoriously poor. It's just a vitamin, and just being without or below range doesn't cause problems. Ha! Those of us diagnosed disagree. Neurological problems can appear at much higher levels. If you have a deficiency not caused by diet (being vegan) then only regular injections help. Tablets don't because if you can't absorb enough B12 from food then tablets don't work either as they take the same route.
  • serindipte
    serindipte Posts: 1,557 Member
    yirara wrote: »
    If you don't take anything with added vitamin B12 then do get your levels checked. Both CFS and Fibro are often misdiagnosed B12 deficiency, which can have the same symptoms. The blood test is only kind of reliable though if you're off all B12 supplements for at least 4 months. Also worth asking for all previous blood test results with ranges as doctors' knowledge on this is notoriously poor. It's just a vitamin, and just being without or below range doesn't cause problems. Ha! Those of us diagnosed disagree. Neurological problems can appear at much higher levels. If you have a deficiency not caused by diet (being vegan) then only regular injections help. Tablets don't because if you can't absorb enough B12 from food then tablets don't work either as they take the same route.

    I was dx with CFS and Fibro in my early twenties. I was also told it was psychosomatic by some doctors, but that's another story. Eventually, it was so bad I couldn't take it anymore. It wasn't the fatigue but the memory failures that were getting to me. My vocab was falling apart, I was forgetting entire conversations, etc.. I loaded up my dogs and went to my mom's house in another state. She's a nurse and had access to a whole new set of doctors. First one I went to checked my B12 and it was about half the minimum. Turns out, my body doesn't absorb B12 correctly and I have to use injections to keep it up, regardless of what I eat and supplements don't work.

    May not be what's going on for OP, but absolutely worth getting checked if it hasn't been. It isn't as common in younger women and some doctors don't even test for it.
  • yirara
    yirara Posts: 9,986 Member
    edited March 2020
    serindipte wrote: »
    yirara wrote: »
    If you don't take anything with added vitamin B12 then do get your levels checked. Both CFS and Fibro are often misdiagnosed B12 deficiency, which can have the same symptoms. The blood test is only kind of reliable though if you're off all B12 supplements for at least 4 months. Also worth asking for all previous blood test results with ranges as doctors' knowledge on this is notoriously poor. It's just a vitamin, and just being without or below range doesn't cause problems. Ha! Those of us diagnosed disagree. Neurological problems can appear at much higher levels. If you have a deficiency not caused by diet (being vegan) then only regular injections help. Tablets don't because if you can't absorb enough B12 from food then tablets don't work either as they take the same route.

    I was dx with CFS and Fibro in my early twenties. I was also told it was psychosomatic by some doctors, but that's another story. Eventually, it was so bad I couldn't take it anymore. It wasn't the fatigue but the memory failures that were getting to me. My vocab was falling apart, I was forgetting entire conversations, etc.. I loaded up my dogs and went to my mom's house in another state. She's a nurse and had access to a whole new set of doctors. First one I went to checked my B12 and it was about half the minimum. Turns out, my body doesn't absorb B12 correctly and I have to use injections to keep it up, regardless of what I eat and supplements don't work.

    May not be what's going on for OP, but absolutely worth getting checked if it hasn't been. It isn't as common in younger women and some doctors don't even test for it.

    That would have been my story if I was in a country where B12 def is treated poorly. Fortunately I was in the right place. Moved to the UK later on where my new GP tried to talk me into not needing the shots and that it's 'just' CFS and Fibro :s

    One thing doctors often forget is that B12 only works together with folate. If levels are too low B12 cannot be converted to the active form the body needs. Most people in my patient network take folic acid daily, as you can't overdose. I just found out (again) that my folate levels drop like a stone if I don't keep on top of it. I get a shot once per week, and that's the maximum distance between shots I can have. Other people need 3x per week or so. One of my last GPs (I move very often) said that nobody really manages on the 2-3 monthly shots the NHS prescribes. :s
  • ladyzherra
    ladyzherra Posts: 438 Member
    Oh, yes! I struggled with CFS for many years, after so many health complications across about 15 years, I finally had to make a decision to change my lifestyle entirely. It took me about 7 years to rebuild. Recently, I have started introducing that fitness that I love back into my life, but I feel so different now than when I struggled with CFS. I am happy to chat about my experiences, if you're interested. I can share what I did and what worked and did not work for me, and offer some tips, and definitely provide support.

    I have found that when you are chronically fatigued, everything in your body suffers from that; moreover, your mental and emotional bodies suffer. To repair, I really needed to change my physical expenditures; and eventually, I realized that I needed to also change my mental and emotional ways of moving through life. Like I said, recovery and change took about 7 years.
  • ladyzherra
    ladyzherra Posts: 438 Member
    edited March 2020



    @yirara Yes! Addressing vitamin and micronutrient deficiencies is really, really essential when you want to support recovery. It's shocking how much a blood test reveals about what your physical body needs. It can be such a help!
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  • amskinner87
    amskinner87 Posts: 159 Member
    I have had CFS diagnosis for 7 years and suffering for about a year longer than that. I was ill health retired a couple of years ago (aged 31!).

    Piled on a lot of weight gradually going from highly active and lean to sedentary, emotional eater and obese. Started losing weight Jan 2019 and have lost nearly 60lb with diet alone. Now mid of healthy bmi range. Has been really hard at times as I struggle to shop and prepare food and nake bad food decisions when out of energy.

    Can def be done tho (assuming weight loss is your goal - I've struggled with any consistent exercise unfortunately).

    Feel free to add me as a friend if you'd like.
  • corinasue1143
    corinasue1143 Posts: 7,460 Member
    Cvs, fibro, pun, ra, etc. finally quit trying to find the cause, started working to find a way to live the best life possible.
    If that sounds like what you’re looking for, let’s talk.
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