Tuesday, August 21, 2012

Life with Commmon Variable Immunoglobbulin Deficiency and Fibromayalgia

Hello to you Laura.

A commenter who has suffered undiagnosed left me several comments yesterday. My doc said that the estimated diagnosis time is now 15 years from onset! I had no way to contact Laura.

Sorry everyone for my lack of posts. It takes all my energy most days to just take care of my little family.

I have been enduring Fibromyalgia pain and lethargy. My numbers are good as far as the IgG. I am holding well. The last two months have had me in a holding pattern. A cellular Rhuomatoligst has confirmed that I do NOT have lupus or RA thank GOD! It is a mystery how the physical pain can grab so hard. A mystery solved in the Fibromyalgia. My nurse told me that a gynecologist she worked with said that fibro is related to endo fibers that free float in the body. At least that is the latest in research. I had several abdominal surgeris over the years ending with a total hysterectomy in 2001.

Well of late with that study it is now proven out that the shoulder impingement's are due to bone spurs. I have surgery on the left shoulder on September 7th. My arm is impinged now with a partial thickness tear along the bursal side of the disal course of the supraspinatus tendon. A common issue in aging and or overuse. My left wrist is in a bad way needing surgery as well. The difficulty in having pain that is greater than what MRI or x ray might indicate is the insulting response of an ignorant P.Assistant. I have  contact with a different hand surgeon but have been on hold until after the test to rule all the other stuff out. My hand is a wound unto itself also in need of surgical repair.

The ortho doc wanted to rule out lupus or RA. It has been over a year now with shoulders in great pains. The surgery should help, but more pain of recovery will be my lot soon. Pain can really effect a soul, this soul.  I do my best to take vitamin B's ,calcium and such.

It was a concern that perhaps the CVID was causing the generalized pain and lethargy. Fibromylagia is actually made worse with lack of sleep. Note that with both shoulders sleep is hard won with the pain. Stress is another main issue with fibro, try pain=poor sleep=stress. A wheel within a wheel. Sitting here to type is like a heavy task physically. Exercise is important, yoga has had to stop due to my shoulder. It is a feeling of being trapped at times. I take a mild muscle relaxer at bed time. That has helped with the flexing and cramping. I am suppose to start a water aerobics program with the arthritis foundation after several weeks of physical therapy training. It is all so very overwhelming. It took 14 weeks to have the two appointments with the Cellular Rhum. doc.

knee shots last thursday and for the next two thrusdays
got to set up the water p.t.
shoulder surgery on 9-7 (it was on the 30th Surgery was postponed by the doc.)
call on the rx for the infusion on 8-25
call my nurse to confirm
call the other surgeon on my wrist to keep them in the loop
Allergy shots 1-2 x wk

Take our bunny to the vet (mites)
Take our dog to the other vet (3 year rabies shot and exam)
Dash has on line school, we are trying to get him into a real good charter school
Dove is in Jr. High, special needs. Got to call her interventionist.

Life is full and days are often like a huge stream through a straw. Pain slowed me way down. Love holds me up.

Please pray for MILove her sister passed away.
her funeral is on the 30th.


2 comments:

Denise said...

Hello my friend..... I am so sorry for your pain and things in your life. I am sorry that I have not been the friend I needed to be... I have stayed away from the blog for a long time but think about blogging all the time... I miss all the girls.... I think that most of them have moved to FB...... I am so very very tired of FB and there is really no personal connection there.... I just did not do well over the past two years but seem to be getting better finally...... I do not know why the events shuck me to the core but it did......Sending blessings to you my fried and pray that the Father God heal your soul and your body....

Reighnie said...

Nothing stops the fibro pain. I have fibro and RA and my numbers would also indicate lupus but as I don't have insurance, I'm not even bothering to find out if the latter is true. 17 years ago I described my pain and such to doctors at a medical center and I was told I was young and needed to have some fun by the Medical Director of the facility, etc... when I persisted, they tried to commit me to a mental facility. The hospital let me go after several hours of observation and wrote that there had been a mistake in my being sent there. It's terrible. Some doctors still don't believe in fibro. I've read about the gynecological aspects of Fibro and it terrifies me.

I've endured all these years and I am sorry you have to go through such pain. You are definitely not alone. *soft hugs*

Older women likewise teach the younger women...

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