Questions about Post-Extertion, and purple skin

[lowkey]

Hello my friends,
I hope you are well today, given the circumstances.

I have a few quick questions, which I hope a few of you will be able to throw some light on. I know CFS is such a confusing and individual thing that it is always hard to get definite answers, but I have faith in the people in this forum, because most of us have gone through similar, horrible, experiences.

Basically, my first questions is I guess about crashes. The way I seem to work is that, irregardless of what I do, I will go through phases/cycles of condition. For example, I keep a diary of my symptoms and how I’m feeling. At the end of each day I will give myself a score out of 10. What seems to happen is that the numbers will follow a pattern sort of like this: 7,7,6,6,6,5,5,5,5,4,4,5,5,6,6,6,7,7. So even if I rest completely for a week, it is still very likely that I will be heading towards a period of feeling worse. However, after a few days of feeling horrible, I know I will probably start to feel a little bit better over the next few days.

The most confusing thing, and the thing I want to raise here is this – even if I exert myself, this cycle is not effected. FOR EXAMPLE, this last week I had known I was heading downhill towards a bad phase. I was really annoyed because I had work on Friday and Saturday nights, and I really really really did not feel like working – I was so exhausted, and dizzy etc etc. I worked both these nights (in customer service, so I am on my feet for 3-4 hours at a time), and Saturday especially was busy because I was behind the grill. It’s getting towards summer here and I actually built up a sweat for pretty much the first time since I got ill 10 months ago. My question is, why, after exerting myself more than I should with CFS, do I not feel worse in the following days. It is now Monday, and I would rate myself at a 6/10. On Friday I was a 4/10, and that was before working two shifts???

My second question is about red/purple skin. For a number of months now, I have had red/purple skin on my hands. Sometimes it is worse than others, but I can detect no pattern. It is not itchy or sore. I also have purple ankles, not itchy, swollen, cold, or sore. Just purple. My kneecaps are also often red, as are my elbows. When I press down on any of this skin, it goes white for a number of seconds. Another thing which is maybe relevant, I think my fingernails are whiter, and especially when I’m in the shower, they go very white. What is up with this??

Thank you very much for your time, and I hope the day is kind to you.
Stay strong.

PS I am a 20 year old male, previously healthy and fit

 

[Martial]

If you have only been ill for 10 months then there is still a lot of other conditions you should try ruling out, if you are not getting delayed PEM then that is another indicator you might have chronic fatigue but not exactly CFS/ME, it is definitely always worth finding out what you can so you have something to treat for if possible. What you are describing though sounds like it could be a circulatory issue such as POTS which is common in different chronic illness, lyme, mono, etc.

 

[lowkey]

If you have only been ill for 10 months then there is still a lot of other conditions you should try ruling out, if you are not getting delayed PEM then that is another indicator you might have chronic fatigue but not exactly CFS/ME, it is definitely always worth finding out what you can so you have something to treat for if possible. What you are describing though sounds like it could be a circulatory issue such as POTS which is common in different chronic illness, lyme, mono, etc.

Thank you for your reply.
I have had lots of blood tests etc, and through many doctors appointments, and also a very expensive specialist appointment, the only conclusion that was drawn was mild chronic fatigue syndrome. Apart from severe PEM, my symptoms match up pretty well with CFS. Although, I have no real joint or muscular pain. The specialist also checked for POTS, and that was a no as well.
Also, when I was first ill I didn't have any discolouration or whatever of the skin, that has come in the last 4 or so months.
Can you suggest any conditions with similar symptoms to CFS, that may not have been tested for?
Thanks heaps

PS- I think your point is very valid. I have a sneaking suspicion that I do not have full blown CFS, but most other things would have shown up on tests. Whatever I have, the fatigue has been daily for 11 months, combine that with other symptoms, and it is not a fun ride

 

[ScottTriGuy]

Thank you for your reply.
I have had lots of blood tests etc, and through many doctors appointments, and also a very expensive specialist appointment, the only conclusion that was drawn was mild chronic fatigue syndrome. Apart from severe PEM, my symptoms match up pretty well with CFS. Although, I have no real joint or muscular pain. The specialist also checked for POTS, and that was a no as well.
Also, when I was first ill I didn't have any discolouration or whatever of the skin, that has come in the last 4 or so months.
Can you suggest any conditions with similar symptoms to CFS, that may not have been tested for?
Thanks heaps

PS- I think your point is very valid. I have a sneaking suspicion that I do not have full blown CFS, but most other things would have shown up on tests. Whatever I have, the fatigue has been daily for 11 months, combine that with other symptoms, and it is not a fun ride

Maybe Raynaud's Syndrome?:

https://en.wikipedia.org/wiki/Raynaud's_phenomenon

 

[Chrisb]

Try Googling Livedo reticularis and see if that looks anything like your skin condition. I came cross it quite by chance and recognised it as an unexplained condition occasionally affecting my hands. Apparently it is a recognised side effect of amantadine which I was once prescribed although I have no particular reason to think the condition linked to that drug in my case.