MDJunction - People Helping People
 

Why wear a ribbon?

 
"I have sleep apnea" (LookinUp)

MDJunction to me

djfilippone"Before I found this site I felt so alone.  Watching my daughter struggle with IH and being treated like she had two heads from doctors.    I have plenty of family and friends but there was nobody that really knew what she was going through.
I not only have support and love from others who will listen and share their
story, but I have made some forever friends.  Having this support site does make a difference to many.
" (djfilippone)

more testimonials
Rheumatoid Arthritis Support Group
A community of patients, family members and friends dedicated to dealing with Rheumatoid Arthritis, together.
Join This Group
Group Home   Forums   Articles   Members (1313)   Diaries   Videos   Leaders   Guidelines
Rheumatoid Group RSS Feed
06/17/2010 10:53 PM
mollymae
mollymae
 
Posts: 59
Member

Hi new to the group I have not been dxed in fact everytime im have blood work it comes back neg. but my Joints and muscles hurt so bad at times if just wish I could cut that part of the body off at that time. but there wouldn't be much of me left at those times too? I am here to learn and get you info if you all don't care to share. I am 30 yrs old and have Two babys one is my baby girl she is 7 and my baby boy is 4 I am married going on 12 yrs now he is the love of my life. he doesn't understand and is not the type of person to talk alot about what is going on with me because he can't fix it and it really bothers him. He is a wonderful Husband and father but even at that he is a man lol. He dont express His feelings well.but I am trying to learn more so I know more what to look for symptoms any info you can pass on would be Great and I would be very greatful to anyone who wants to share..

Thanks

MollyErmm Dizzy

Post edited by: mollymae, at: 06/17/2010 10:54 PM

Reply

06/18/2010 05:18 AM  Top
Molly5
Molly5
 
Posts: 1119
Senior Member

Molly, Hello, I'm Molly too! Well not really! That is my screen name. My real name is Kim. So Welcome! I'm sorry you are going through this and trying to raise young children. My children are teens and it is very confusing for them and my husband. You will be so glad you found this site. There are many wonderful caring people here. See you in the posts, Molly (Kim)

06/18/2010 08:58 AM  Top
SandraR2002
SandraR2002
 
Posts: 675
Member

Mollymae,

You will find a lot of comfort and help on this site. I know what you mean about husbands. My husband is wonderful, but just really doesn't always 'get it'. And he feels frustrated b/c he can't FIX it (just like you said). I finally told him that it isn't him job to fix this.... and I try to explain to him in very simple terms what is going on w/ the flares. (he doesn't get complicated) I just tell him when I flare/crash it takes me day to day to rebuild the strength... After 9 months he is finally understanding .... some....

But ppl on this site understand COMPLETELY!!!!

We are glad you are here!!!

Hugs,

Sandy


06/18/2010 10:53 AM  Top
bits
bits
 
Posts: 10324
VIP Member

Hi mollymae

Welcome dear. This is a wonderful site. Much caring for one another and true understanding.

I was dxed with RA nearly 3 years ago. I (as well as many more) am RA negative. So you don't have to be positive to have RA. The weird thing is I have tested positive for Lupus 3 times. However, I do not present Lupus but do present RA.

I read that it takes an average of 2 years to dx RA. Simply because a doc must feel certain you have it because of the meds used for treatment. It was about 3 years before I was dxed with RA. Three years prior to RA dx I was dxed with Raynaud's. And years before that I was dxed with OA. The OA took off like crazy and within a year had progressed to severe. I had a knee replacement at age 47 and was sheduled for other 3 months later.

So, please keep a watch on your symptoms and ask the doc about clinical presentation. It is my understanding the quicker RA is treated the better chance of remission. Sadly, many of us lose a few years before treatment.

When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and I could say, "I used everything you gave me." ~ Erma Bombeck
bits

06/18/2010 02:48 PM  Top
Cata
Cata
 
Posts: 1899
Group Leader

Welcome to the family, Molly!

I don't believe too much in what tests say, on their own, specially just one test. RA is too complicated to be diagnosed or treated based on one test.

I have had a SEVERE RA since age four, and there have been many periods when i've been RA factor negative, even with an active flare...

As others have said, clinical analysis of your symptoms and x-rays are very important to.

Just reading through the posts you will learn a lot, and most importantly, you feel understood, and you will feel so strongly you are not alone!! Because you aren't!!

Cata
-----
The information you find in this website should not replace medical advise. I am happy to share my experience but remember I am just a patient like you.

06/18/2010 03:13 PM  Top
peasha
peasha
 
Posts: 1370
VIP Member

Welcome to the group Molly, I too don't believe one test is enough. The use of MRI's, CAT scans, and x-rays are extremely important as well. Without them I would still be a TMJ sufferer and they never would have found the massive degeneration of my mandibular joints.

Ive been blessed with a husband who can relate to my pain cause he has dental issues that cause him pain too. With that I can just tell him that on his worst days of pain, imagine that bieng in your hands, knees, shoulders, and hips. Then you will understand what I feel like during my flare ups.

Of course he feels helpless without bieng able to fix it either, especially since we fixed his problem by taking out the teeth that caused the problem. Wish it were that easy for the rest of us Wink Look forward to learning more about you in discussions, and once again welcome!

Alicia

I'm a recovering self injurer (clean 5yrs about),have Severe tendonitis, Sinusitis, Asthma, Allergies, Insomnia, RA, Fibromyalgia, TMJD, MDD, and a host of other traumas I have overcome throughout my life.
Im not an expert, but I have been through hell and back with medical procedures and medicine treatments.
Im getting my degree in Pharmacology, and want to learn more about how these problems can be treated.
My worst enemy is my health, and I believe I have the strength to not let it get me down.
*Don't Worry a' Be Happy*-with life

06/18/2010 03:57 PM  Top
mammy
mammy
 
Posts: 7217
VIP Member

Welcome to our family, we're so pleased to have you with us Smile

I can understand your frustration, my labs were all negative several times before I was dx. Thank goodness I have a very good team of doctors that didn't give up on me and believed me.

I think it will benefit you to stick around, everyone is great here, a little silly at times but hey laughter is the best medicine. Why don't you go through some posts, read up as much as you can and then you could come back with any specific questions you might have. Just don't be shy, okay? Jump in anywhere and join us to chat, that's how we get to know one another. You can speak privately with any member too by using the PM.

I have very, very painful joints, severe fatigue and lots of swelling in my hands, feet and ankles. That's the short version of my symptoms. I also have other illnesses too and some of the syptoms are very similar so I don't always know which illness is causing which symptom.....makes it more interesting that way Smile

Connie

I am not a doctor and do not play one on these forums so please consult your physician for actual medical advice.

06/18/2010 06:53 PM  Top
bearlie
bearlie
 
Posts: 1509
VIP Member

Hi Mollymae, Welcome to the group. There is much sharing on here regarding symptoms, meds, flares, and family. We take turns venting and laughing and sharing our lives. There is a wealth of information on the forums but there is also that all important human touch that can be soooo important. This is a great, caring group.

Please feel free to ask or share whatever you like.

Again, welcome.

Laura
We are now one day closer to the cure!

06/19/2010 02:39 PM  Top
Cata
Cata
 
Posts: 1899
Group Leader

When i read all your posts i think how we all have felt like freaks at one point or the other in our lives.... From dealing with family and friends to our interactions with doctors! Many times after talking to a doctor about what i am feeling i have decided i am a total health freak, thinking that, after all, if a doctor things this is highly unusual then it must be, because he/she is a doctor...

Then we found this place and we realize that we are not freaks! or even if we were, there are many many of us around Wink

Cata
-----
The information you find in this website should not replace medical advise. I am happy to share my experience but remember I am just a patient like you.

06/19/2010 06:45 PM  Top
peasha
peasha
 
Posts: 1370
VIP Member

Heeyy! I thought I was the only one that had doctors saying "Well we have never seen this before...." or "This is not typical of someone of your age or with this condition...." Wink
I'm a recovering self injurer (clean 5yrs about),have Severe tendonitis, Sinusitis, Asthma, Allergies, Insomnia, RA, Fibromyalgia, TMJD, MDD, and a host of other traumas I have overcome throughout my life.
Im not an expert, but I have been through hell and back with medical procedures and medicine treatments.
Im getting my degree in Pharmacology, and want to learn more about how these problems can be treated.
My worst enemy is my health, and I believe I have the strength to not let it get me down.
*Don't Worry a' Be Happy*-with life
Reply

Share this discussion with your friends:
Members who viewed this page also read:
<< Start < Prev 1 2 3 Next > End >>


Disclaimer: The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice.
In case of EMERGENCY call 911 or 1.800.273.TALK (8255) to the National Suicide Prevention Lifeline. Read more.
Contact Us | Bookmark Us | FAQ | Awareness Ribbons
About Us | Terms & Conditions | Privacy | Spread the Word | MDJ Advocates | Advertise
Copyright (c) 2006-2013 MDJunction.com All Rights Reserved