kevin Feldman
Active Member
Overlapping concomitant problems in ankle,heel and feet
Seeking an intelligent opinion- this is way over my pay grade-overlapping conditions
I am a recent Dx Me/Cfs approx 14-16 months from onset. Cfs was the final DX after chasing rabbits and getting several provisional Dx’s; small fiber neuropathy, hypocorticolism, psoriatic Arthritis, (PsA), hypogammaglobulinemia, CVID-Then cfs.
I had a very aggressive Psa onset. Within the first 90 days characteristic Periostitis ( new bone growth from heels) , within 7 months multiple joint erosions and periostitis in hands and wrists. I also have Enthesitis in ankles which is a particularly painful inflammation of the insertion point of tendon to bone ( obviously the achilles-largest tendon hurts like hell).
Psa is an autoimmune disease, cvid is immunodeficiency and ab dysfunction/regulation and I obviously have autoimmune mayhem going on. The provisional Dx’s could not account for the multiple “cfs” checklist of maladies. This is how I finally figured it out as prior to 60 days ago I did not know the underlying details Me/cfs . Thanks to all you, the website and making productive use of my insomnia I was a quick learner. The virulent aggressive level of Polyarthritis ( all peripherals/ symmetric and bilateral) is really off the chart. I have studied it and found it is just behind the very worst 5% with Arthritis Mutilans. I also have substantial pitting edema in my ankles. I could never pin down the reason for the bilateral ankle edema- I think I may have just discovered the cause is the cfs problem of OI/POTS ( the dysautonimic vasculapathy)
The Dilemna –The Ankles
This is pardon the pun “My achilles heel” Because of enthesitis, edema ( blood pooling), periostitis ,inflammation, joint pain , neuropathy I can’t really walk well for any length of time. Its too painful to strike heel on ground and the ankles kill as well. I had started MTX and Enbrel on jan 2014 but stopped in march when I got my cvid dx as I began Hyquvia Subq IVIG and I thought I had bad reaction ( weakness to mtx and enbrell). I now know the bad reaction was really my hypersensitivity to anything as my cfs symptoms were progressive and changing, causing myhealth decline. So, as I complete gobs of tests , for the foreseeable future I will be treating the immune system ( hopefully find some modulator). I just started LDN. So which pain/inflammation is coming from where.? Psa has its own inflammatory presence, cfs different, and cvid ?? How do I get back to treating the Autoimmune inflammatory polyarthritis? My fear is left untreated my joints will erode even worse at a faster pace. Once they do there is no reversing. How would one of you approach the concurrent issues with an objective to somehow get better functionality in ankles /feet for movement.? Take your best guess/shot, I am cluelessin Florida
Seeking an intelligent opinion- this is way over my pay grade-overlapping conditions
I am a recent Dx Me/Cfs approx 14-16 months from onset. Cfs was the final DX after chasing rabbits and getting several provisional Dx’s; small fiber neuropathy, hypocorticolism, psoriatic Arthritis, (PsA), hypogammaglobulinemia, CVID-Then cfs.
I had a very aggressive Psa onset. Within the first 90 days characteristic Periostitis ( new bone growth from heels) , within 7 months multiple joint erosions and periostitis in hands and wrists. I also have Enthesitis in ankles which is a particularly painful inflammation of the insertion point of tendon to bone ( obviously the achilles-largest tendon hurts like hell).
Psa is an autoimmune disease, cvid is immunodeficiency and ab dysfunction/regulation and I obviously have autoimmune mayhem going on. The provisional Dx’s could not account for the multiple “cfs” checklist of maladies. This is how I finally figured it out as prior to 60 days ago I did not know the underlying details Me/cfs . Thanks to all you, the website and making productive use of my insomnia I was a quick learner. The virulent aggressive level of Polyarthritis ( all peripherals/ symmetric and bilateral) is really off the chart. I have studied it and found it is just behind the very worst 5% with Arthritis Mutilans. I also have substantial pitting edema in my ankles. I could never pin down the reason for the bilateral ankle edema- I think I may have just discovered the cause is the cfs problem of OI/POTS ( the dysautonimic vasculapathy)
The Dilemna –The Ankles
This is pardon the pun “My achilles heel” Because of enthesitis, edema ( blood pooling), periostitis ,inflammation, joint pain , neuropathy I can’t really walk well for any length of time. Its too painful to strike heel on ground and the ankles kill as well. I had started MTX and Enbrel on jan 2014 but stopped in march when I got my cvid dx as I began Hyquvia Subq IVIG and I thought I had bad reaction ( weakness to mtx and enbrell). I now know the bad reaction was really my hypersensitivity to anything as my cfs symptoms were progressive and changing, causing myhealth decline. So, as I complete gobs of tests , for the foreseeable future I will be treating the immune system ( hopefully find some modulator). I just started LDN. So which pain/inflammation is coming from where.? Psa has its own inflammatory presence, cfs different, and cvid ?? How do I get back to treating the Autoimmune inflammatory polyarthritis? My fear is left untreated my joints will erode even worse at a faster pace. Once they do there is no reversing. How would one of you approach the concurrent issues with an objective to somehow get better functionality in ankles /feet for movement.? Take your best guess/shot, I am cluelessin Florida