Treating overlapping concomitant conditions-seeking helpful opinion

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
 

Issie

Well-Known Member
I can only speak for myself and what works for me.

I'm HyperPOTS with lots of autoimmune issues and inflammatory problems.

For me, I think my key was going lower fat, whole food vegan. I read a lot of web sites to learn how to do this healthy. I stuck with it as I decided for me - it was do or die. (literally). That alone addressed inflammation and autoimmunity.

I try to address things from an alternative direction first and then if I can't get the results I need - last resort is Western meds. Because of having several varieties of Protozoa and co infections - one of my meds was doxycyciline. I have been on this with herbals and supplements for two years. That also addresses your immune system.

Along with POTS, the subset type I have, are two other things. One is MCAS (mast cell activation syndrome) and the other is EDS (Ehlers Danlos). We call it the trilogy. The later causes all sorts of issues with connective tissue, dislocations and lots of pain.

First, I would suggest looking into what you suspect. But know that there are very few docs that are in this field. If you have POTS, there are a lot of subsets and we all approach our bodies differently with what we do. It depends on your presentation.

Right now, I have been off all my meds for going on 3 weeks now. What I am doing is working just as well - maybe better. But.....still a trial. Many of us will do "better" and get under a lot of stress and we have a "flare". I am pulling out if my last one - better than I have in the past. So I'm hoping this continues to work.

I Addressed my inflammation, cleaned up my diet and that helped my autoimmune system.

This may sound odd - but I started putting my bare feet on the ground and sitting, to start with, in a chair. With time, walking barefoot on the bare ground and natural surfaces. I used to couldn't stand for my feet to be uncushioned because they hurt so bad. This is now doable. And according to some research I've read will help the body energize and heal. It's called Earthing. My hubby has started doing it too and we can tell a difference. (I have broken my foot off one leg (reattached with plate and screws) and the other foot broke at the ankle and tore all tendons off both feet. With EDS most are double jointed and we are very unstable in our joints. The kids with a continuous sprained something.

For my pain, I'm using Turmeric, black cumin seed and green tea. All together in a cup. Texture is awful - but is really helping my pain, mood and energy. I do other supplements too - but these seem to be what is helping. I also just added zinc (without copper see info on pyrolouria. And kyrunenine pathway on Cort's blog page.)

Sorry to hear of your pain. Hoping for you to find some answers.

Issie
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I wish I could help out Kevin but it's beyond my pay grade too....You might want to try to identify a specialist in your area working in hospital that's associated with academia. They seem to be more in touch with the latest findings.

There's also a rare diseases center at the NIH where I believe they have form where you can tell them your symptoms and test results and they may be able to match you up with something...You obviously have something different going on. There's also NORD....another rare diseases group.

Good luck in finding an answer :)
 

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