please help pain

[gibsongal]

hi everyone. no dr can figure it out.
i have had excruciating bone and muscle and joint pain for a year. Arms legs shoulders knees ankles you name it.

it sometimes comes on as an "attack" really bad..like everything is stabbing and bruised, like i am being eaten or elecrified or vibrating. very neuro..

I thought Lyme or a co infection. they say no.
i have hep c too.
i am 50 female and was doing great till this started. thus the Lyme disease theory. 3 megative lyme tests.
although i did feel much better on antibiotic for a month.

Can CMV cause this?

VL<100 for 10 years
t cells 600 ish

[mkh9]

I think you are covering your bases. Also, I wouldn't take Topomax either. It can cause glaucoma. Also, I have had the same treatment in ER's. They automatically assume you are a drug addict if you ask for pain meds. It is so hurtful. One example of many was I went into the ER throwing up blood and they gave me a gastroscopy and demorol and valium for the pain and the procedure. They put me in the hospital overnight and a dumb doctor came in (didn't look at my chart) and said "so how long have you been on valium?" I told him since I was given it in the ER yesterday for my gastroscopy and he walked out without a word.
hang in there I think you will find a answer. Sorry if you have HIV. That is tough treatment. I wouldn't doubt that some of those drugs don't cause a lot of problems as well as helping with the other.
mkh9

[gibsongal]

thanks for the input.! i am on a medication tenofovir for hiv and my ID  doc is taking me off of it to see if the pain stops. this i asked months ago and he didn't think so.. now he changes his mind and Monday we will start a new Anti retro viral.

i am looking into the HEP C and pain thing but i know 2 people with hep c, one passed away and neither has this pain even at the end stage.. so  when my doc sugested the hep c  was the cause i was doubtful and that led me to Lyme as i am a country girl in Vermont and have been bitten multiple time but never got the rash or fever ..

my Ra was neg.  cRP good. the wrist pain is the same pain i get in my ankles and other joints.. so i can't have carpal i my whole body. thanks!

my igenx tests came in..
it was CDC neg igenx neg although i do have aome + bands and some ++ bands.

due to my brain fog i have misplaced my copy and i am sure i put them "someplace safe" but am  getting another copy because i turned the house upside down and have not found them...(i waited 3 weeks for them and they were precious to me so IDK...my memory.

going to look into this HEP c more with bone joint muscle pain and the "attacks " i have  comes on sudden and i lay and cry with my whole body in pain..

what a mystery.

getting an appointment for a neuro work up too. hope it is soon. they should have ordered it months ago.

sometimes i think i should just go to the best hospital int he area and "check in"!
i went to the ER last year and they sent me home with topomax. i didn't take it because i had no diagnosis. they didn't run tests. i will not go back to that hospital.! they thought i was drug seeking and  dismissed me.

thanks people. !

[mkh9]

Well after reading some more and talking to a Lymes friend this is some more info. Apparently, Hepatitis C can cause bone pain and arthritic pain. So it is possible that is the cause of your pain. Some people with Hepatitis C infection have cryoglobulinemia. You can get tested for this with a complete blood test, compliment assay, a cryoglobulin test, Rheumatoid factor is positive in types II and III, and  a skin biopsy. This way you can rule out Lupus too with the RA and antinuclear antibodies, and anti-DNA test plus the skin biopsy and rule out multiple myeolma.  As for the Lyme test apparently you should see a LLMD (Lyme literate medical doctor). You can get one on ILADS.org. Many very positive Lyme patients are negative but are positive when their blood test is sent to IgeneX labs in California. The electric shock pain sounds like carpal tunnel and also if you have Lyme co-infection with Bartonella (another bug you get with Lyme).  I would go the route of Hepatitis C first since you have it and see if treatment helps and if you have any thing positive for the cryoglobulin tests and you do have the osteoporosis that would cause bone pain too. The antibiotics wouldn't help a viral infection but they would help LYmes and other bacterial infections like Lyme or bone infections. Have you had any Infections like a wound that could have spread to the blood or bone?
Hope this helps.
Mkh9

[mkh9]

I am a mircrobiologist. I am thinking of a few things, like CRPS (chronic regional pain syndrome), autoimmune disease like lupus since you respond to plaquenil. Also, the pain in the wrist you describe sounds like carpal tunnel. Perhaps you have some type of autoimmune disease that acts on the tendons? I will look up some things after I go to lunch and the store. So you haven't had a bone scan? That would tell if you had inflammation of the bones and cancer. But, I'm not saying you have cancer or anything, just that I'm trying to get some ideas of what to have you do.
more later.
mkh9

[gibsongal]

MKH

i have not been treated for hepc type 1a waiting for better treatment with better success rate coming down the pipe line.
i had a dexa scan osteopenia in one area.

i had an emg 10 years ago because my leg muscles were cramping and weak. inclusive.

migrains with numbness
recent olfactory issues. thought something burning 3 times in 1 hr. turned to make SURE the lamp was not on fire.

Asked for MRI from ID doc.
he said what part.?

from oct to recently i couldn't squeeze a washcloth with out pain using a fork stabbing pain in wrists.

had spine pain hip pain neck pain extreme fatigue or insomnia.
ringing in ears head all the time.

i am a mess.
took ceftin and plaquinil july-aug. felt better.
feel like it is all coming back.

you think you can help me? your page says you are a microbiologist?

[mkh9]

Maybe it is side effects of the drugs your are on to treat the HepC? What drugs are you taking for it? Have they done a bone scan? Usually, CMV is acquired as a child and it is doubtful you got a recent infection from CMV. Other than that I don't know based on what you have given. Have you been to a rheumatologist?