• 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, 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.

New symptom: joint pain

outdamnspot

Senior Member
Messages
924
I have the classic symptoms of CFS (severe), incl. POTS, dyautonomia etc. I always hoped there might be an autoimmune cause to my illness since it runs in my family, but a screening panel a few months ago was negative.

However, two weeks ago, I developed bad joint pain in my knees, and now it hurts to even walk around the house (I'm already bedbound). I'm only 32.

Is this worth bringing up with a doctor?
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi @outdamnspot,

I would think so. A fresh perspective can be useful, so much goes untreated because of the assumption its 'just CFS'.

Other than the POTS, have you any other indications of a hypermobility spectrum disorder? I have been diagnosed with that and find the knees are particularly troublesome.

Otherwise you might want to look at inflammatory disorders - I get a lot of ankle & back pain that tends to follow classic inflammatory patterns, a spondyloarthropathy has been suspected (positive HLA-B27), but I'm apparently 'too mobile', so awaiting an MRI to exclude it just in case.

Ryan
 

outdamnspot

Senior Member
Messages
924
Hi @outdamnspot,

I would think so. A fresh perspective can be useful, so much goes untreated because of the assumption its 'just CFS'.

Other than the POTS, have you any other indications of a hypermobility spectrum disorder? I have been diagnosed with that and find the knees are particularly troublesome.

Otherwise you might want to look at inflammatory disorders - I get a lot of ankle & back pain that tends to follow classic inflammatory patterns, a spondyloarthropathy has been suspected (positive HLA-B27), but I'm apparently 'too mobile', so awaiting an MRI to exclude it just in case.

Ryan

Thanks. Sadly, the doctor was useless. I've been checked for Rheumatoid Arthritis etc. by someone else at the clinic, so she said no further testing was necessary at this point and that I should just take painkillers. I would have figured if someone is already 'disabled' by CFS and another symptom pops up that makes their life a lot harder, it would be worth looking into, but I suppose not.
 

perchance dreamer

Senior Member
Messages
1,699
The supplement that helps me the most for joint pain is the Meriva form of curcumin. It's not a magic bullet, but it does take the edge off for me, and I definitely feel it if I run out. I take Thorne Meriva, 2 in the morning and 2 in the early evening:

https://www.amazon.com/Thorne-Resea...1lPNOB9ITL&preST=_SY300_QL70_&dpSrc=srch&th=1

The above is for the sustained release. Thorne also carries a regular release Meriva, which you can also buy on Amazon.

I think it took a week or so to start getting the pain-relieving effects, so if you try it, be patient.

Good luck!