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[Guest guest]

Hello all,

This is my first time to write, but I have enjoyed all the info that you

all share, and have learned much from all of you.

My husband has been diagnosed with a rheumatic disease....but we are

still not sure what he has. We have been told RA, Fibromyalgia and

connective tissue disease, he has been tested for carpral tunnel syndrome

(surgery recommended), torn roater cuff in both shoulders (not severe enough

to warrant surgery), halidaus ridgitis (not sure of that spelling, but the

big toe joint on the foot is bone to bone, and painful (surgery advised). We

have been to 4 different rheumatoligist, MD's, Neuro Dr.'s, Orthopedic Dr.'s,

Podiatrist, Counselor, and Phyciatrist....and I cannot remember the

rest....its been a long road over the last 2 1/2 years. At this point we are

no closer to knowing what is wrong.

I wanted to share this with all of you to get your feedback on your own

symptoms for some of the above mentioned conditions. He has been on the AP

therapy, 200 mg of doxyicycline a day for the last 2 months, prednisone,

DMARDS, plaquinial (sp??), Kineret (injections) hydrocodone, percocet, and a

few others, so far nothing is working. The prednisone helps to a degree, but

does not prevent what we call flares, and we understand the long term effects

of this drug.

His symptoms started in the shoulders, the pain was so intense it sent

him to the emergency rooms several times, his only relief was and injection

of demerol, which stopped the pain for awhile and allowed him to sleep. We

were going to dr's frequently looking for an answer to the pain, which soon

turned to pain in other parts of the body, knees, ankles and hands. He was

tested for Lupus, Veneral Diseases, HIV, Lyme disease, Hepititis, and more,

the only thing that came up consistantly was a high rh factor...(we also saw

the neuro dr, for a spinal xray that showed bone spurs in C5 and C6 w/no

nerve impringement....finally his MD referred him to a rheumatologist. So

began the journey of the DMARDS, prednisone, contisone injections in his

knees, shoulders and wrists. It is now 2 years later, and we are at square

one. We have set up and appt with a new neurologist this month, we are going

to revisit the spinal issue and request new EMG's for the carpral tunnel. We

have been seeing the same rheumy for about 6 months now, he has no idea what

to do??? He is a good listener, and I truely believe he is stumped.

My husband has swelling in his hands often, they feel stiff and swollen,

I have seen his fingers look like sausages, it usually last for a few days,

and goes away, but he says each time these flares happen they seem to leave

him weaker in that area, his grip gets weaker for example. He has had these

flares in his hips and groin area as well, he saw a urologist recently to

check for bladder problems, none were found. He has the most severe pain in

the shoulders, he describes it as a knife going thru the shoulder and just

staying there, not a throbbing pain, a constant pain, lasting usually 4-5

days, and afterwards he is simply sore as you would have sore muscles, always

feels weak and tired. The pain is so severe that keeps him from working or

from sleeping, during these times he has to use the hydrocodone or the

percocet, which neither seem to offer much relief. I wonder, does RA cause

this kind of pain? I live for the days when he is only in slight pain, they

are becoming fewer and further between, you can imagine the toll it is taking

on each of us. It just seems to me that that if this was RA, something would

have worked by now....he has not responded to any of the RA drugs, and AP is

not working either, he actually seems to be getting worse. We are thinking

of trying methotrexate next, just hoping maybe it is RA and this will work??

He has not gotton the Carpral tunnel surgery, and he probably needs to, we

will find out in a couple of weeks. It would be good to know what we are

fighting against here!!! Thanks to you all and keep up the good fight,

God Bless.....K