Re: New member with Reactive Arthritis

[Guest guest]

I would like to thank all those members who responded to my

original posting on list and by private email. I have received some

very helpful advice.

Janice

Janice Baker

janice.baker@...

[Guest guest]

Kay,

I absolutely understand how your feeling & what your going through!!! I was also

diagnosed about a year and a half ago, and prescribed methotrexate..which I have

stopped taking due to how toxic I've read it is. I had the same symptoms as you,

and had a lot of trouble walking due to extreme pain in my feet. Be patient!!

Physical therapy helped me very much to get back to walking normally. I do have

my bad days but take indomethacin for the pain and inflammation. I did a lot of

research online to find out why I had this disease. I still get very much

confused, and worry that my kids could develop this same disease. Good luck &

god bless you.

Sent via BlackBerry from T-Mobile

[Guest guest]

This is a group for spondyloarthropathies.  I officially have psoriatic

arthritis.  This is the place for you with reactive arthritis as well.  I am

also active in the Spondylitis Association of America. 

http://www.spondylitis.org/main.aspx   We have a support group that meets in

Indianapolis.  In it currently we have some retirees like me but also some guys

much younger who are fully employed and active and a mother with two children

with spondylitis. We've had a teenage boy devastated when he lost his ability to

play ball in high school and a woman who drove from Kentucky because we were the

closest face to face support group.  Here's a listing of all our groups.  

http://www.spondylitis.org/patient_resources/support_groups.aspx  My daughter

is the leader of the one in Ann Arbor.  I hope there's one in your area.

Janette in Indiana

From: MK <ontopuhduhvoild@...>

Subject: new member with reactive arthritis

Date: Thursday, May 26, 2011, 12:55 AM

 

Hi,

I was diagnosed about a year ago with reactive arthritis. I am supposed to be

taking 20 mg of methotrexate each week. I backed off of it recently because of

an injury (long story) but plan to go back to that level soon. I also take Mobic

every day, mostly for this plantar fasciitis which is somehow related to my

arthritis.

I came across this group while I was looking through , never heard

of it otherwise.

My question is: Is there a face-to-face support group for people with reactive

arthritis and related illnesses? I don't know much about the arthritis

foundation, I kind of assumed the activities are geared toward senior citizens

and I am 49.

The reason I ask is I am frustrated right now because I can't do the athletic

things I used to do or go outside in full sun, etc. When I take my full dose of

methotrexate I actually feel pretty good, unless I overdo activities.

Meanwhile some very stressful things are going on with family. I would just love

to spend an afternoon riding my bike like I used to, but my knees and ankles

won't let me and I am afraid of being boiled alive by the sun. I just hate

feeling like I'm trapped.

Thanks for any info,

-- Kay

[Guest guest]

Hi Kay

Welcome to our group. What city do you live in?? Some of us have met when

we find others who live in the same city. Mostly we meet here online. It

is worth a try to see what your local Arthritis Foundation has available.

They have all ages and some have exercise classes or events to go to. Sorry

to hear you have family frustrations, most family members do not understand.

That is what this group is for. We are not really trapped, we just live in

a different world. I call chronic illness a " foreign country, they do

things differently there " . You are among friends here. Let us know what we

can do to help.

I too have been on and off Methotrexate many times and I am now on Mobic

again. How long have you been treated?? Do you have a good support system

of friends or do you have a church family? Most of us rely on our faith.

And God can use us to help others. I volunteer at my church and that makes

me feel useful and needed. And it helps take my mind off things. Do you

have a good doctor?

Wishing you hugs and blessings

Priscilla

Tucson, AZ

[Guest guest]

Hi Priscilla,

I live in Northeast Ohio, which means I can get to meetings or see people in

Akron, Canton, Cleveland or Youngstown pretty easily if needed.

Yeah, I hope I didn't sound dismissive of the Arthritis Foundation. All I've

really tried is an aquatics class at the YMCA and it was all old people. I like

old people, but...

As for church, I am kind of on again, off again. I work evenings and I am really

pretty sleepy at 9 or 10 in the morning. Occasionally I go to informal church

things that are held on my days off!

To tell you the truth, I am not sure I can answer that question of whether I

have a good doctor. Sometimes she will spend a lot of time with me, other times,

she just checks me over pretty quickly, and I never seem to be that sick when I

am in her office, at least not since my first couple visits. My pain is usually

not that great. It seems like all we are doing is managing symptoms. If I'm not

having symptoms then all is well? Well, not really, because the medicine is so

strong!

-- Kay

[Guest guest]

Tom,

One of the many lousy side effects I experienced with methotrexate is a killer

migraine headache if you go out in the sun.

Janette in Indiana

From: thomaslambirth <thomaslambirth@...>

Subject: Re: new member with reactive arthritis

Date: Thursday, May 26, 2011, 6:27 PM

 

Hi,

I was wondering why you can not go out in the sun much? Tom

>

> Hi,

>

> I was diagnosed about a year ago with reactive arthritis. I am supposed to be

taking 20 mg of methotrexate each week. I backed off of it recently because of

an injury (long story) but plan to go back to that level soon. I also take Mobic

every day, mostly for this plantar fasciitis which is somehow related to my

arthritis.

>

> I came across this group while I was looking through , never heard

of it otherwise.

>

> My question is: Is there a face-to-face support group for people with reactive

arthritis and related illnesses? I don't know much about the arthritis

foundation, I kind of assumed the activities are geared toward senior citizens

and I am 49.

>

> The reason I ask is I am frustrated right now because I can't do the athletic

things I used to do or go outside in full sun, etc. When I take my full dose of

methotrexate I actually feel pretty good, unless I overdo activities.

>

> Meanwhile some very stressful things are going on with family. I would just

love to spend an afternoon riding my bike like I used to, but my knees and

ankles won't let me and I am afraid of being boiled alive by the sun. I just

hate feeling like I'm trapped.

>

> Thanks for any info,

>

> -- Kay

>