Can you have M.E/CFS without the fatigue?

[Coleyyywo]

Hi

I have been suffering for the last 3 years with episodes of flu like symptoms. They usually last 3 months then I’m fine for like a year then they come back. For the last 3 months I’ve really been struggling, I get such painful aches in my thighs then these flu like symptoms. Some days I’m fine but most days I’m not. The symptoms change by the hour.

I saw on my notes my doctor mentioned CFS, but I don’t have extremely fatigue, I do get tired from feeling so ill but it’s not that bad.

Also to add I’ve had loads of bloods done, my ANA can’t back fine, thyroid, infectious diseases, all fine. Inflammation marker was slightly high and ALT was raised.

Is it possible to have M.E/CFS without fatigue?

Thanks so much

[Floppy99]

other auto immune conditions if ANA raised? Types of arthritis? More of a fibro than CFS?

[Coleyyywo in reply to Floppy99]

Thanks for your response, my ANA was normal but ALT raised. Yeah fibro seems to maybe fit more with it being more pain related, I don’t really have issues with fatigue it’s a pain issue for me

[Regalbirdy]

Hi , Have you had your Vitamin D levels checked in that battery of tests you’ve had done? I mention this because a deficiency can cause painful muscle issues.

I probably would also take a closer look at your diet - in case you have an intolerance to a food group; or need to change what you eat to ensure that it’s not a vitamin or mineral deficiency. For example, I have to be careful to get enough magnesium into my diet because a blood test showed it was low/borderline deficient.

Neither of the tests I mention are normally included as standard though.

Good luck figuring things out.

[Ebbysmum]

Hi, one of the things that makes ME/CFS difficult to diagnose is the variety and extent of symptoms that people experience. Ask your GP to test specifically for Fibromyalgia, as the pain points are very specific. However you can have ME/CFS & Fibro. A raised inflammatory marker on blood tests is normal for ME/CFS. Vitamin levels are good to test for and also thyroid antibodies as well as the usual T3&4. Diet may be helpful in management, I recently saw a nutritionist (I am 8 years diagnosed with ME but need to lose weight, which is very difficult as can’t exercise much) she noted that my liver was being overworked with all the supplements I was taking, because many doubled up on the same things so we have rejigged that. She has also made tweaks to my daily diet and I am definitely noticing I have better energy levels. The defining thing with ME/CFS is post exertion malaise (PEM) as opposed to fatigue per se. PEM occurs 24/48 hours after doing an activity and tends to hit like you have been hit by a truck! This can be ameliorated by using adaptive pacing techniques which use small bouts of activity and rest to maintain a baseline of daily activity and avoid the peaks and troughs of “crash and burn”.. The charity Action for ME and also the ME association have pacing guides online. You might also benefit from an appointment with a physiotherapist who understands ME/CFS.

[RhianR in reply to Ebbysmum]

Hi, I was very interested to read your reply. Do you have Hypothyroidism and ME/CFS like me? I agree, losing weight with these illnesses is really really challenging when we cannot tolerate exercise. Please could you let me have the details of your Nutritionist? And was there a specific Test done which led to them knowing that your liver was being overworked with supplements? I've been taking loads too for the past 9 months due to severe deficiencies, and have no idea if they're helping. Tbh I feel no better. But it is a very long journey and I'm impatient.......understandable after 10 years of illness on a sliding scale in the wrong direction. Sadly there's no magic bullet. Many thanks in advance for any additional info you can share. Take care 😊

[RhianR]

Hi. There's different severity levels with ME/CFS, but having 'fatigue' is I'd say the key feature of this illness. Like you, my level of fatigue wasn't anywhere as bad as it is now 10 years on....it crept up on me and I kept going on adrenaline which was disastrous......and I've been severe level I.e predominantly housebound and bedbound for the past 3 years. I have adrenal failure and mitochondrial dysfunction. I have Fibro symptoms too but previous *GP didn't believe in it (*appalling individual!) so never formally diagnosed, but do have formal ME/CFS diagnosis although that was far from easy. The stigma we face is appalling but stay strong and do not accept BS from unsupportive GPs. Keep pushing for support bc that's their job. If you feel unwell and have any persistent level of ME/CFS symptoms (however mild), I'd advise you to seek a second opinion if you're being fobbed off by your GP. I say this because I was treated like that for years and I got worse and worse. If I'd been helped at the start I may well not have suffered so much. You've not said it you've any underlying illnesses. I myself was diagnosed with Hypothyroidism (& Hashimotos Thyroid Disease) in the year before developing ME/CFS, and unfortunately its the same story for a lot of ME/CFS sufferers. There's a connection, not that the NHS Endocrinologists ever seem to accept that which is really frustrating. I would suggest you get GP to do bloods to check your Thyroid Function, and read up on the illness by googling Dr Sarah Myhill. You may end up having to see a private Functional Medicine Doctor to get anywhere but "Good Luck"🍀

[peege]

Just a thought, Were you checked for Lymes disease & Vialls disease?