New member - anyone with burning knees?

[Guest guest]

Hi All,

I was recently diagnosed with CVID, will be starting IVIG in January,

have a long history of immune system dysfunction and infections, want

to learn from the experiences of others. Does anyone else have

symptoms like these that accompany CIVD?:

After standing or walking for more than a few minutes, my knees get

BRIGHT red, painful and begin burning. At times, you can feel the

heat through my clothing from several inches away. My knees swell

up, and if I don't get off my feet, the swelling and burning goes

down to my feet. At times, it looks like I have elephantiasis. I

often run fevers, and they tend to get the burning started. I

sometimes get burning in the joints of my hands, and my hip joints

are extremely tender (not sure exactly what causes that – always

assumed it was just arthritis.)

For many years, I have chalked up my symptoms to chronic Lyme, which

I have probably had for 43 years – it's really hard to eradicate once

it passes the blood-brain barrier. I only got diagnosed with it

about 7 years ago, mainly based on the existence of spirochetes in my

blood. Since I was a kid, I've had immune system problems – I was

sick with strep or staph infections constantly – I had strep for 3

years straight, and the docs thought it was due to having scarlet

fever at age 4. I was diagnosed with rheumatoid arthritis at age 7

(now believed to be incorrect). I was unable to walk for several

months, and I had the swelling, redness and pain in my knees

primarily – I don't remember if it burned. My thyroid gave out on me

when I was 14, which led to a diagnosis of Hashimoto's thyroiditis.

As an adult, I have fought repeated respiratory infections which

often turned into pneumonia. Since I was very young, several docs

have tried experimental autogonous vaccines on me in the hopes of

building up my immune system. I've been on oral antibiotics for a

good bit of my life and in 2001, I was on IV antibiotics for 10

months through a PICC line to combat a body-wide staph infection. My

infectious disease specialist gave me IVIG infusions years ago until

the insurance company complained. What else – I've had shingles,

weird illnesses like leishmaniasis, and I have been diagnosed with

fibromyalgia. Last year, I had 11 angioedema episodes – only the

first was life-threatening because my airway began to close. Also,

during the first episode, in addition to the swelling of my face, it

was also bright red and burning, and even after the swelling went

down, my face peeled at least five times, with oozing, crusty scabs –

real attractive. Now I wonder if the angioedema was accompanied by

erythromelalgia (EM). Coldness on my joints is intensely painful, so

I don't use that to deal with the burning. Muscle twitches galore.

I also have high blood pressure (treated with meds) and get exhausted

pretty easily. I must stay on antibiotics or I get pneumonia within

days, but even on the antibiotics, I still get skin lesions which I

assume are staph.

At this point, I'm open to suggestion - anything to reduce the pain,

swelling, and heat in my legs other than elevating them, which works,

but which is not conducive to making a living or functioning on a

basic level. I have to plan things carefully in terms of parking

downtown or estimating how long I will be standing doing normal

things. Even shopping at the grocery store is a challenge (probably

partly because thus far, I have stubbornly refused to use a scooter

or a wheelchair). So far, numerous docs have declined to diagnose

the burning knees – all have said they've never seen anything like it

and they've also never seen EM in person. Benicar seemed to help

with the problem, but now I can't take it because of the angioedema

risk.

Anyone else relate to this weird constellation of symptoms? Anyone

think that the EM symptoms are part of CVID and may resolve when I

start IVIG?

Any info or pointers would be welcome.

Thanks!