Helllo everyone,
I am not sure where to begin. I feel like I will never get better. I recently had a lyme test done and it came back normal. I know this sounds weird but I was hoping it would come back positive so that I would finally have a name for my illness. Does this sound at all like lyme or am I barking up the wrong tree?
3.5 years go in January I got some kind of severe flu. Felt like I was dying. From that day to day I have been very ill and can't walk properly. My legs were swollen and so painful. I went to the hospital and was told it was reactive arthritis from my flu like illness. 3.5 years later I still have that leg pain. I go to work and function mostly but my life has not been the same since. I long to just take a ten minute pain free walk.
I have been sent to 6 specialists. After many xrays, mri's, blood tests they can't figure out what is causing my leg pain. They keep ruling out arthritis. I had shots into my knees. No help. I am allergic to anti inflm drugs so can't take them to ease the pain.
Backing up a bit.
about 7 years ago I started with these symptoms:
Exhausted all the time
Hair thinning
Sudden B12 deficiency
Brain fog
That could actually all be from the B12 deficiency.
So after my flu like severe illness
Severe pain in both legs from the thighs down. Feels like my knees have been hit with a hammer.
Legs sensitive to the touch, esp the calves
Water retention in legs
Awful pain in feet and under feet
Burning in legs and feet
Stiff all the time. Can sit down for a few seconds and stiff again when getting up.
Feels like my shins are going to snap.
Awful brain fog
Poor memory
Forgetting words
Handwriting suddenly bad
Hair thinning
Strange numbness next to my left eye that comes and goes
Sometimes in the morning in the shower I have an incredible urge to lay down before I faint
Feel like I am in slow motion
Hard to get anything done as the smallest thing wares me out
Vit D deficiency but I am taking meds for that
Weird little red dots appearing on my body. Small like pin pricks.
Stomach bloating
Headaches
On weekends I need to rest alot and sometimes feel like I am in a coma and can't wake up from it.
I was recenly sent to a pain specialist. He told me that I did not have fibro like someone has suggested. He is referring me to a infectious disease dr but told me to look up Lyme online etc. I did and was shocked to see a rash on a sub site that I had at one point. The rash was like somoene had used their hand to make scratches under both of my arms and stomach. That rash is no longer there though.
I know at one point I saw a weird bite on my ankle but can't remember as everything is blending in together.
I live in Southern Ontario but over the past 22 years I have traveled to Isreal, Egypt, (from England originally) All over the USA and Mexico.
Anyway, the Lyme test came back normal and I feel like nobody will ever be able to help me. Could the test be wrong?
Sorry for the long post. Oh, just remembered. Because I am in pain all the time and allergic to anti inflm. drugs my family doctor finally agreed to let me have 5mg of prednisone each day because nothing else will help. It makes getting out of bed easier and my legs a little less stiff. As soon as I lay down at night I start with the burning and pain etc.