Newby

[Guest guest]

Hello to everyone!

I was diagnosed with RA and Hashimoto's thyroiditis two years ago, along with

an official diagnosis of IBS. Talk about the dreaded three! On days when I'm

not in joint agony, my eyes are dry, hair falls out, or I'm on the potty. Many

times it is a combination of all of them...the fatigue from RA tends to make my

IBS flare up, which makes my eyes hurt like the dickens, so forth and so on. I

was 49 when my doctor finally decided to give me these diagnoses. I'm 51 now.

It took between two and three years to finally get diagnosed because I'm one

of the few where the RA doesn't show in bloodwork. As you can well imagine, in

those two to three years, I was tested and treated for everything in the book.

I was treated for cancer, diabetes, fibro, even depression! RA may well be

discouraging, but I was hurting, not depressed!

I finally gave up on my rheumatologist and sought out a wonderful lady doctor,

an internist, who spent 20 years as a nurse before going to school to become a

doctor...wonderful bedside manner, and is a great help. She spotted that I was

being treated for stuff I didn't have, and suspected RA long before the official

diagnosis.

My husband and son understand what is wrong with me, but my in-laws are not

supportive mainly because they are ignorant of what RA is...their advice is to

take those herbal joint compounds. They are also of the opinion that " you'll

get better soon " . Yeesh! My husband has tried to explain it to them to no

avail. Has anyone else had folks tell you that you will get over RA?

Anyways, that's my story...and I'm glad to finally find a place where I can

feel like I'm not the only one in the world in such pain. Thanks!!!

Wish you a pain-free day,

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[Guest guest]

HI , I am also new to the group. Was diagnosed in Feb, even though I am

also RA negative. My Rheaumy told me she could tell from my area of pain,my

inflammtion and most of all my xrays that I have RA. Before my diagnosis, my

family considered me a hypocondriac, every time I woud tell them I wasnt feeling

well, they would say, well you never feel good. And honestly, I dont. Since my

diagnosis, they have become more understanding. My 2 older daughters are in

college and actually were learning about auto immune diseases which really

helped them understand. ( I hate now they worry) but hang in there and thank God

the ones that live in your home are understanding. Maybe you can get them some

literature on RA. I know at first I would lay pamplets around my house. But yes

I understand and feel your pain. Wishing everyone a pain free day, ...

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[Guest guest]

and Group

Welcome to our support Group, I been here little over a month. Took me

a while to get use to it. THis is my first support group for anything.

Everyone is the greatest. I take MTX, Sulfa, plaquenile, no side

effects to be concerned about so far. Again welcome

gentle hugs to everyone

Clora

[Guest guest]

Hello and welcome!

Sorry to hear of your pains.

Can't help saying your careful retrospective description  would make a

wonderful history for medical students to learn from: Every doctor of the

future need to hear this about autoimmune arthritis so they can recognise it.

All the pointers and clues are there.Physical Exam , tests should follow, but

really the patient's story says it all...inflammatory arthritis...

Even your description of your recent horrible pains are describing a process so

clearly..I have heard slighly different versions many times and I'm sure many

of the group will relate to this.

My own good friend with RA describes waking, lying still, relatively pain

free, then suddenly feeling her malicious 'little gremlins' mobilising in the

early am  and moving around, sometimes going to  joints previously relatively

spared and stabbing viciously.Flu like fatigue runs alongside, that is so

typical.

The group will be able to tell you their experiences first hand, but you ask

about flare etc. From my medical understanding of such auto immune responses,

once mounted the initial body immune response is likely to be quite sustained

and building up through a kind of chain reaction...the body behaves as it would

to an immunisation or infection  (where the result is desirable) triggering an

outpouring of inflammatory responses targeted  in this case on the body's own

cells rather than bacteria.That is why steroids are often required promptly

short term to damp down the immune response in a powerful way while the other

drugs start to kick in.

Hope this helps a little.

Best wishes

retired doc UK

[ ] Newby

Hi,

I was diagnosed with RA just a month ago so I'm still learning about

this twist in my life. I'm joining to hear from others who have

navigated this disease.

I'm in my mid 50s, educator, married. Usually fairly active. Like

working in the yard, painting ceramics, photography and working on my

computer.

Much of what I've realized about what my body was doing comes from

hindsight... remembering different events after the diagnosis. I can

remember a week long period about 30 years ago when every joint in my

body hurt. It passed so I figured it was 'flu' but it was so weird, I

never forgot it. (My rheumatologist says that was probably the

start.) Nothing since then until about 3 years ago when both my hands

started hurting when I tried to open jars or grip something. Then

about a year ago, they started hurting anytime I used them. Painting

or holding my camera was murder. I figured I was 'getting old' and

had osteoarthritis. Then, I started having periods when I was sure I

was coming down with the flu...I'd ache all over, but then it would

pass with no further development. I started with extreme exhaustion

all the time and my hands and feet hurt any time I used them, my

hands were very swollen and my ankles would get very tired and achy

if I stood too long. Finally, went to the dr and had blood tests,

etc. Was hit with the diagnosis (which was a shock as my husband's

grandfather had RA and was extremely crippled and bedridden the last

years of his life). Xrays show no joint damage in my hands but I've

already got joint damage and bone erosion in my feet and ankles. Then

another facet started...the joints in my hands and feet would HURT

even without using them. It feels like someone has my voodoo doll and

is shoving knitting needles here and there. I have to grit my teeth

and hold my breath till each pain eases, but then it will move to

another joint. The swelling and those stabs had eased off a lot a

week ago so I did some gardening and that set everything back off

again even worse than before.

My rheumatologist prescribed methotrexate but we've had to back off

on the dosage as we think it caused heart palpitations. Only been on

that 3 weeks. I am trying different OTC antiinflammatories for the

pain and feel that 800mg of ibuprofen does better than any other, so

far. I'm wearing 2 wrist splints at night and during some activities

in the day. (This typing is taking me some time as I keep quitting

and then come back to it.)

So, that's me in a large nutshell. I've shared all this as a way to

introduce myself to the group and to find out if my experiences

are 'typical' enough to warrant suggestions or information as to what

I can expect in the future.

One question that I do have is about these things, flares and

remissions. I had thought that the pain all through my joints was the

flare and remission would give me relief from pain. But, then I

started getting those stabs through my hands and feet almost

continually. They have eased off in the past day somewhat but my

hands and feet still hurt if I use them (I find walking barefoot or

with sandals sends shocks through different joints in my feet...solid

shoes feel better. And I'm a Florida girl!) I have to time how long

I walk or stand or I know my ankles will give out. Is this still a

flare period? Will this get better or is this probably my life and

the flares will be worse periods?

Any help will be greatly appreciated.

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