• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

CFS but no pain, swollen glands or sore throat?

Jemima37

Senior Member
Messages
407
Location
UK
Does anyone else experience cfs minus the sore throat, raised glands and pain? My fatigue is daily chronic fatigue where I am exhausted in eyes and head and body can feel heavy and exhausted doing anything around the house. Crashes are horrible and hit after any stress or anxiety, and mostly after exertion.

I crashed Sunday night within a couple of hours of going to the park with my daughter. Today I have crashed after doing some housework. Silly of me as I was in such a horrible crash yesterday, felt 20% better today and I've done housework and within an hour I had the weak legs hitting again which is my first sign I'm crashing.

I get severe high weakness and it feels they're almost burning but weak, when I walk j feel I'm bouncing in the legs or sinking into the floor and this can trigger very high anxiety on walking. I avoid walking all I can as it causes panic attacks if I do during a bad crash. I feel weak, nausea, off my food, I feel swimmy of giddy in my head, horrible weak bouncy legs and like I have high anxiety. Crash days are awful and I have to rest when they hit. I call those my 10/10 days which I had yesterday and today a 9 and stupidly back into a 10. I seem to crash quick after exertion.

I've not had cfs 100% confirmed but suggested by 2 doctors, but one of which sometimes tries to say I'm just depressed which is not the case, I'm depressed at my situation but desperate to be active again as this is ruining my life.

Does anyone else crash without the other symptoms or just have the fatigue issues? I have to write a letter to my new gp as mine is leaving and I want to make sure I'm informed and not going to be laughed out of her appointment with me for suggesting cfs. I've been this way 18 months and need this firmly diagnosing so I can work on recovery.

Sorry to post again, I promise this is my last question on the subject of symptoms lol!

Julie
 

Mij

Messages
2,353
Julie, yes I have experienced all the symptoms you are describing over last 26 years. I've learnt to 'go with it' and try not to worry. I've had symptoms that I've forgotten about only to have them come back 10 years later. Sometimes the symptoms are transient and never come back.
 

Jemima37

Senior Member
Messages
407
Location
UK
Julie, yes I have experienced all the symptoms you are describing over last 26 years. I've learnt to 'go with it' and try not to worry. I've had symptoms that I've forgotten about only to have them come back 10 years later. Sometimes the symptoms are transient and never come back.
Thank you. I'm sorry to hear you suffer the same but it's reassuring to me I'm not alone.
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
The one symptom that seperates ME from other illnesses is the PEM. The symptoms always increase after the exertion. This doesn't occur in other illnesses as far as I'm aware(correct me if I'm wrong). Other symptoms like sore throats vary based on the person.

I don't see why your new dr would laugh at you mentioning cfs. They will likely want to diagnose you with cfs so that they don't have to do anymore tests. It's not exactly like they see a cfs diagnosis as anything significant in the UK anyway.

If It was easier then I'd say to avoid a cfs diagnosis in the NHS as you'll likely be told that you're a MUPP(et)S.

Are you getting support for your anxiety and depression? It won't cure your ME symptoms but it will make you feel better. Plus you've identified anxiety and stress as an exertion. If you solve that then it could help your post exertion symptoms.
 

Jemima37

Senior Member
Messages
407
Location
UK
The one symptom that seperates ME from other illnesses is the PEM. The symptoms always increase after the exertion. This doesn't occur in other illnesses as far as I'm aware(correct me if I'm wrong). Other symptoms like sore throats vary based on the person.

I don't see why your new dr would laugh at you mentioning cfs. They will likely want to diagnose you with cfs so that they don't have to do anymore tests. It's not exactly like they see a cfs diagnosis as anything significant in the UK anyway.

If It was easier then I'd say to avoid a cfs diagnosis in the NHS as you'll likely be told that you're a MUPP(et)S.

Are you getting support for your anxiety and depression? It won't cure your ME symptoms but it will make you feel better. Plus you've identified anxiety and stress as an exertion. If you solve that then it could help your post exertion symptoms.
I have ptsd since 2012 after I was attacked. Had therapy and meds but then when my health started 18 months ago the anxiety returned but purely out of frustration as my gp never helped or diagnosed. I was the one who pointed out my thyroid was borderline and he finally kept an eye on it and treated it once higher. Then just feeling so ill daily led to anxiety returning and with it agoraphobia.

I started therapy again in January but my therapist last week told me she felt until I felt less tired and not crashing so often I couldn't focus on therapy and cbt lol! Which was helpful. I need support more than anything to help with the agoraphobia and social anxiety this isolation from illness has caused. Other than that I'm not anxious, just anxious about socialising and going to appointments but day to day I'm not anxious unless I crash bad and it seems to come with the symptoms out of my control if that makes sense. Like my body just erupts it. Then in days I'm just fatigued I've little anxiety.

I'm just fed up of the chronic fatigue and being stuck like this more than anything. Hence the word depression. I also crash from stress ajdbhy that I mean if I see my extended family as my brother attacked me so it's only if I see members of my extended family it causes a crash but I've took steps to minimise that and I've refused to see my mum this year so far to help myself recover. I have always put myself last and allowed her visits for my kids sakes but now I've stopped them as they made me very unwell. So it does just seem to be exertion that causes the crashes and daily I have chronic fatigue.

Thank you
Julie
 

Dechi

Senior Member
Messages
1,454
I don't have any of those symptoms either and I have a formal ME diagnosis by a specialist.
 

Jemima37

Senior Member
Messages
407
Location
UK
@Jemima37 - PEM has a substantial delay after the exertion. When you have symptoms an hour or two after exertion, that probably isn't PEM, but a different form of exercise intolerance.
That's been my concern. It comes on so fast after just going out to a park to walk a small amount or even just sitting watching. Or doing housework, just polishing or cleaning the bathroom. It hits soon after and worse then next day.
 

Ambrosia_angel

Senior Member
Messages
544
Location
England
That's been my concern. It comes on so fast after just going out to a park to walk a small amount or even just sitting watching. Or doing housework, just polishing or cleaning the bathroom. It hits soon after and worse then next day.
You could have fatigue related to other causes or it could be ME. Either way it would be best to seek out other causes first before you settle for an ME diagnosis.

In my case I considered myself recovered from ME because I don't have PEM like I used to. My PEM used to hit me a day or so after. If I get fatigued nowadays then it's usually while I'm doing an activity or a little after. Like how the majority of people usually suffer from fatigue.
 
Messages
15,786
It hits soon after and worse then next day.
It still might be ME, if there's also a reaction starting later. We also have OI usually, which can cause a more immediate exercise intolerance. So there's one hit shortly after exertion, then a new one the next day. Though my experience is that the two episodes are pretty distinct regarding symptoms, and I'll mostly recover from the OI or muscle exhaustion after a few hours, long before the PEM hits.
 

Jemima37

Senior Member
Messages
407
Location
UK
It still might be ME, if there's also a reaction starting later. We also have OI usually, which can cause a more immediate exercise intolerance. So there's one hit shortly after exertion, then a new one the next day. Though my experience is that the two episodes are pretty distinct regarding symptoms, and I'll mostly recover from the OI or muscle exhaustion after a few hours, long before the PEM hits.
I do wonder if my almost instant leg weakness and exhaustion is more a OI issue and then sometimes I can crash the following day and feel unwell or like today I just had the reaction last night but today just feel tired and the leg weakness is much better.
 

Chrisb

Senior Member
Messages
1,051
There is a question, which I have never seen raised, as to the length of time that the sore throats and swollen glands persist before largely disappearing and leaving "just" the malaise-like symptoms. Certainly the relative importance of symptoms varies with time. It maybe that there are no very distinct patterns about this and that every case has its own characteristics.
 

Mij

Messages
2,353
@Jemima37 -When you have symptoms an hour or two after exertion, that probably isn't PEM, but a different form of exercise intolerance.

Or it could be due to a viral infection or immune responding to 'something' (allergy etc.) going on at the time of over exertions.
 

Jemima37

Senior Member
Messages
407
Location
UK
Or it could be due to a viral infection or immune responding to 'something' (allergy etc.) going on at the time of over exertions.
It's been happening for 18 months. I'm always chronically fatigued and the crashes happen after any stress or physical activity. I would say it's linked to how fatigued I am.