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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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CFS/ME?

Messages
4
Hi. I'm new here. I haven't had an official diagnosis yet (next GP appointment 14th December)but wouldn't mind some feedback from people who have.


Last year I had a severe case of norovirus that led to a hospital stay due to dehydration and acute kidney injury. Since then I have not been right.
I developed breathlessness and craniofacial hyperhidrosis.

An exhaustion that I've never experienced before, sleeping for 9, 10 hours and still having no energy when I wake up. Pains and aches that painkillers don't help. Short term memory problems. I have become clumsy, dropping things and walking in to door frames.

I went to Wales for a long weekend with friends in February and was in bed for 3 weeks when I got back. I have had blood tests which have ruled out a host of conditions.

I have been getting B12 injections for approximately 20 years. I am on Fluoxetine, amitriptyline, propranolol and take vitamin D with calcium and a multivitamin with minerals every day. I take cocodamol 30/500 for pain and use a tens machine on my shoulder and lower back.

I no longer go out with friends or drink as I know I will pay for it the next day. I used to be very outgoing and now manage through work and want to go to bed by 8 every night.

Does anyone have any advice on how to talk to my doctor at my next appointment?

Thanks in advance for any help.
 
Last edited by a moderator:

Wishful

Senior Member
Messages
5,657
Location
Alberta
Do you get PEM (post-exertional malaise)? That's the key symptom for ME. Do you fit the international criteria for ME? Just based on what you've written, I'd guess that it's some other post-viral disorder. Your blood test may have ruled out 'a host' of other conditions, but I doubt that they've ruled out everything but ME. I don't think I've heard anyone else mention excessive sweating as an ME symptom.

I suggest paying attention to any changes in your symptoms. Are they better/worse at a specific time of day? Are they better/worse after certain foods/drinks/activities? A journal of food/activity/symptoms can be very useful for seeing correlations between symptoms and various factors that might cause the changes. Memory doesn't work well for that sort of thing. If you discover that a certain food or whatever reliably makes your symptoms better or worse, that can help a doctor figure out what tests to do.
 

alkt

Senior Member
Messages
339
Location
uk
I had excessive sweating from near the beginning of when I got ill with m.e if I remember correctly a few others with m.e also reported the same symptom . I used to have at least 3 big cotton handkerchiefs on me at all time it was always more noticeable after a walk to the shops when standing in a queue . it isn't pleasant and can be embarrassing but in the long term harmless I think it's part of the messed up internal thermostat feeling really hot when it's cold and so on .
 
Messages
64
sorry it does sound like cfs to me. can you work? i would go to infectious disease doc and get the epstein barr titers done. also immunologist, may be helpful. this is what i did 25 yrs. ago and try not to "push" that is harmful to us. the beginning without a dx is the worst time. but after a long while, it does get better. it wouldnt hurt to find yourself a good support group. but they are hard to find now. when i got dx, they were all over the place, and thats what got me through it.

good luck dear., joanie
 

Murph

:)
Messages
1,792
Sounds like it could be. Get ready for your doctor to tell you you're dreaming when you mention it.

I'm sorry about this but the insult to add to the injury of this condition is you may need to sift through a few doctors before you find one who is open to doing something other than telling you to get over it.

The upside is you have this website for back-up. When it happened to me I was lost in a pre-internet uncertainty that dragged on for years.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
That sounds very much like ME/CFS to me. I would not though be in a hurry to get a doctor to diagnose it as once you have this on your medical records it can cause doctors to think of one quick negatively, lots of doctors are very biased towards ME/CFS people. I personally would not bring up ME/CFS to the doctor and just leave it all up to him whatever he wants to put your problems down as.
 
Messages
4
Thanks for the support and advice. I am still working but it isn't a very demanding role although when I do have to learn a new skill I have difficulty getting staying focused and am mentally and physically exhausted for days afterwards. To the point I can't fold a towel or dry my hair once I've made it in to the shower.
The sweating is really embarrassing and because I wear glasses, they steam up and condensation appears on them. I have a mocrofibre towel with me to deal with that.
My old GP would always listen to his patient, he has since retired but his daughter now works at the practice and seems to be the same. I've booked the appointment with her specifically is one in particular who is very dismissive.
 

jesse's mom

Senior Member
Messages
6,795
Location
Alabama USA
Welcome to PR! It sounds to me like CFS. Overlapping symptoms is enough to participate in this forum.
Mainly the treatment for many of us is to treat the symptoms. There is a wide range of ways people do this, from changing diets, to medication, supplementing, and even meditation. All this and pacing are helping me to have a higher quality of life.

I did not get a firm diagnosis for years after I was housebound. There is a very steep learning curve and much of the science is way over my head. Low Dose Naltrexone, or LDN is a drug that is helping many patients. This is an off label use of an opioid reuptake inhibitor. I haven't found a Dr willing to prescribe that for me, yet.
 

Hip

Senior Member
Messages
17,800
Last year I had a severe case of norovirus that led to a hospital stay due to dehydration and acute kidney injury.

Was that infection diagnosed just by its symptoms, or were you also given a blood test confirming the presence of norovirus?

The reason I ask is because enterovirus infection can produce similar symptoms, and enterovirus is linked to ME/CFS.
 
Messages
4
It was confirmed by the hospital. They.moved me to the infectious disease ward when the test results came back.