Undiagnosed cfs

Posted , 5 users are following.

Hi, I have never been diagnosed with cfs but everything points to it.

Muscles feel fatigued very quickly (like lactic acid won't leave them)

Pains that come and go all over body

Gut problems

Brain fog


There are many more things. Does anybody on here have any good advice? Thanks

0 likes, 13 replies

13 Replies

  • Posted

    is does sound like M.E/CFS i would go back to your doctors and ask them to do blood tests to rule anything else out first

    • Posted

      Thanks for your reply. I've had loads of blood tests and all came back normal except one time I was low in folate and was giving folic acid tablets. The thing that gives me the most bother is my muscles feeling tired all the time. Before this I was very physically active.

    • Posted

      yes i get muscle weakness quite alot. i would just stand up and my legs would go from underneath me, some days i cant even get out of bed.

      i would speak to your doc again and ask if there is any specialist in your area

  • Posted

    It's the CF symptoms fore sure. How did it all start? Did you have an infection, accident or major stress right before or some time before? Or did it come out of the blue? Did it start gradually, or abruptly?

    • Posted

      Thanks for the reply. It started after a bad virus and I've never recovered. I always woke up unrefreshed and was tired all day. As time went by the muscle weakness kicked in. Thank god the fatigue is no Wer near what it was but arms and legs are the bit that gets me the most. The gut problem have only come in the last few months, I had h pylori bacterial infection recently as well

    • Posted

      I had the gut problems, also. And I still have them, but only at 10%. I had h pylori years before and didn't have an effect on me, I also know many people that have it with no problems. I don't think they're related. My problems started after a nasty mono infection, too. It took about 1 and a half years to start recovering, and only after some periods of rest and stress avoidance.

    • Posted

      How are you at present? Did you ever have the muscle weakness problem? (like burning, lactic acid feeling). What about brain fog?

  • Posted

    At the moment I am 90% recovered. I sometimes have gut problems if I eat too much and some muscle twitching.

    I had the weakness in the past and I also had periods when I could barely walk without getting sick and very tired. Also I had bad insomnia. I currently still have some mild insomnia some days, but much less. I had bad anxiety almost daily before sleep and sometimes after eating, but now I have only very mild anxiety a few times a month.

    • Posted

      That's great news. I would have stress and anxiety alot. What all did you do or change to recover?

    • Posted

      I just rested a lot more, stayed in hospital, then left work for a few months and avoided all stress and isolated myself to some degree. I don't know if it works for everybody, it's just what I did.

  • Posted

    Hi Joe

    I've been diagnosed with CFS for about 2 years now, along with Fibromyalgia, and experience much the same as you. Mine came on after a really physically and mentally stressful period of my life with work, needless to say that I have been unable to work since being diagnosed.

    For me it's a case of no matter how much sleep I get I always feel like I have run a marathon the day before. My right shoulder and left elbow give me the most pain for some unknown reason, but can generally feel pain and weakness anywhere on my body. Thing is I'm not one to sit there and rest, it drives me insane with boredom. I love playing guitar and drums so I will spend at least an hour playing them most days, so I'm probably not helping myself at all. The worst part of all though are the gut problems, constant IBS type symptoms that make me feel lousy pretty much all day, everyday. You say you've had plenty of blood tests, have you had your stools tested for blood and faecal calprotectin. Only ask as some other conditions can actually lead to, and be the driving force for CFS. All my blood tests are fine, yet I have raised faecal calprotectin levels, which indicate inflammation somewhere along the digestive tract. The doctor did suspect Crohns Disease however as my blood tests so no sign of inflammation and a colonoscopy with biopsies came back clear this diagnosis was discarded. I have been told that there is a chance I could still have it present in the small bowel, however as other test results have been good then this is very unlikely. Might be worth being tested as it might reveal something else.

    • Posted

      Hi Paul

      Sorry to hear, seems your having a bad time with it. I gave a stool sample a couple of months ago and I had h pylori but that's all they said and was given 2 antibiotics. I do seem to get rectum pain that comes and goes as well. I have been a stressed the past few weeks and it has definitely made me feel a lot more fatigue. Have you been to see any specialist yet?

    • Posted

      I've seen a Gastroenterologist, Neurologist and Rheumatologist, and the combined reports of all three led to my diagnosis of CFS and Fibromyalgia. Unfortunately I live in a very rural parts of the UK, and access to specialist help clinics for these conditions is poor, I am at least a one hour drive from a clinic and most days I find it tough going getting to the toilet or getting a drink, let alone travel over 100 miles in any mode of transport.

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