Does it sound like CFS? I don't know which doctors to see anymore

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Hey there, I'm new to this new community.

I hate sounding dramatic, but I'm not really sure who to ask anymore, and really would like some answers about my condition. It's not life threatening or anything but it's quite annoying specially cause I'm only 21. I've gone through a few doctors and none had answers because all my blood tests come out with healthy results. Doctor thought it was an autoimmune disease, but I tested negative for ANA, which rules this out according to her. My symptoms are as follows:

-Random joint pain, doesn't seem to be triggered by anything in specific and it affects all my joints. It's severe and it comes as fast as it goes but always returns.

-Extremely sore muscles even when I didn't use them much, gets worse the more I use them, but even by simple things like moving my arms in the air. It mostly affects my back, shoulders and arms. I often wake up feeling like I have been training really hard eg lifting weights even though I did nothing.

-However, I don't feel stiff or less flexible than before.

-Always feel tired and sleepy, but still struggle to fall asleep.

-Can't focus on anything as I used to be able to.

-Frequent bowel problems, swollen, stomach and general guts ache.

-A rash that never goes away on my finger.

-Frequent lightheadedness.

So this sounds like this CFS, from what I've seen? Is it a possibility I should mention to my doctor? I'd like to hear your thoughts and experiences, please. Thank you.

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7 Replies

  • Posted

    Have you been tested for lymes disease? Ever been bit by a tick or other bugs? Your joint pain could be from that. Also have you ever had mono/glandular fever? Sometimes that is linked to CFS. You could get tested for Epstein barr virus. Start taking lots of vitamins and minerals. Cut down on wheat ,sugar and dairy. Some people cut it out totally and have good results unlike me. I have had chronic ebv for years. It basically rules my life so i thrive on the good days which usually come with good sleep (rare) good nutrition (try) and epsom salt bath 1x a week. Your light headedness may be from POTS( tachycardia ) does your heart speed up when you stand up?
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    • Posted

      Hello and thanks for your input!

      I have asked my doctor about Lyme, he said the likelihood of that being the case in my country was really really low, but I still wonder if I should ignore that and get tested for it anyway... because better safe than sorry.

      I hadn't considered the possibility of it being Epstein barr... will mention it the next time. Tnank you again!

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  • Posted

    Hi

    Your symptoms sound very similar to mine and I've recently been diagnosed with CFS. Unfortunately each day is very different. I go through periods of random aches and pains along with dizziness and various other symptoms to wake up the next day feeling normal again. The positive is that there are some good days where I can function normally. Plenty of rest and not over doing things works for me. I would definitely speak to your doctor about it as they will be able to tailor your treatment based on your individual symptoms. I've seen various specialists- Neurologist, Rheumatologist and Infectious Disease Consultant who have all confirmed I have CFS. Some days I struggle to understand how CFS can make you feel so horrendous and that it's not something more serious. Fortunately those days are rare and I try to remain positive. Good luck!

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    • Posted

      Thank you so much for sharing your struggles with me and assuring me that it might actually be Chronic Fatigue Syndrome. Best of luck to you as well!
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  • Posted

    When you do an activity, do you get fatigued, way out of proportion to the activity? This is the red flag for ME/CFS.

     

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    • Posted

      I don't get as fatigued as much as I get sore, I do feel tired but it's not extreme to a point where I feel like I will collapse. I mostly feel sore. Thanks for your input!

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  • Posted

    Hi. From what you mention of your varying symptoms, i would definintely get a food intolerance test done. As per a previous comment if you are having digestion issues it can have a knock on effect on mental and physical as I have found with simar symptoms to yours.
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