Advertisement -- Learn more about ads on this site.
 

team959forum


  Team Forum
Living with Rheumatoid Autoimmune Disease (RAD)

A Guide to Posting in Your SparkTeam Forum

  FORUM:   Introduce Yourself to Team Forum
TOPIC:   New here, awaiting final diagnosis? 


Search
Reply Create A New Topic Subscribe to this Discussion
Advertisement -- Learn more about ads on this site.
Author: Message: Sorting Last Post on Top


ROXANNEBYS
SparkPoints: (12)
Fitness Minutes: (0)
Posts: 4
10/19/12 10:32 A

Send Private Message
Reply
Thanks for the sweet welcome ! I will keep in touch as often as I can.



_LINDA
_LINDA's Photo SparkPoints: (149,601)
Fitness Minutes: (96,775)
Posts: 6,613
10/19/12 10:25 A

_LINDA's SparkPage
Send Private Message
Reply
emoticon to the team Roxanne,
Its great you found us, but I am so sorry to hear all the horrors you are going through. I have had RA since age 6.5 so have been through the mill. I have had five joint replacements and three foot operations, and a total of 33 surgeries not related to RA. I am very fortunate to live in Canada where my health care is taken care of or I would have spent my whole life in debt. I think its so sad you Americans have to wait for approval for insurance for every little procedure, treatment or medicine. It makes for such a long and painful wait. I find it very strange they saw nothing on that X Ray!..
I take dilaudid and oxycontin for pain, its effective a lot of the time. A life saver for me has been the biologics like Remicade, Humira, Enbrel etc. This is perfect for anyone with gastric issues as they are infusions or injectables. The huge drawback is the incredible cost of them :( I can see insurance companies balking at agreeing to them unless every other avenue is explored :( The problem with RA is it needs to be treated aggressively and fast because the damages from it can happen so quickly. Waiting around for months for approval or to see if a treatment will be effective is terrible. First line drugs they always give is methotrexate which for some people can have side effects which is why they tell you to take folate with it to try prevent some. Prednisone is also a standby, but its side effects are terrible one of which can be weight gain :( The main thing is to keep pushing your Dr.'s when things aren't right and get second opinions if you are happy with what they say or they are not moving quick enough to help you. Do research online for the latest treatments for your conditions to make sure your Dr.'s are doing all they can for you.
Do join our daily chatter as they have great support in there and you can vent, say what is going on and generally keep in touch with people who are suffering like you. Also make up a Spark Page, this is a big way of communicating and the only way you can add friends. You can also blog and send goodies with it.
Hugs,
Linda from Canada

Never Give Up! When one door closes, I simply kick down another one!!
Stand Tall, Walk Proud-Dani W, Fitness Instructor
You CAN do it!


167 Maintenance Weeks
 
0
45
90
135
180


ANGRITTER
ANGRITTER's Photo SparkPoints: (80,653)
Fitness Minutes: (57,632)
Posts: 2,875
10/19/12 7:27 A

Community Team Member

ANGRITTER's SparkPage
Send Private Message
Reply
WOW - you have been dealt a mighty blow. I believe the best person for you to get info from would be DEDICATED2HIM as she is a long term survivor. The finger may go down if you apply ice them heat.

I take gabapentin and vicodin as well, but it does nothing for the spasm or the back and neck pain. Have applied for disability because I can't sit for more than 30 minutes and can't walk more than that either. So a lot of days I get up and do something and then come back to bed and lay down for a half hour before I get up to do more. I have started walking just to get my body moving and hoping that it will help relieve the stiff joints. If you give it time, movement does work.

However, some days are just stay in bed or living room days. I have only been diagnosed since last year and have not had the really severe things happen but once. ALthough my fingers and toes are getting worse, I keep using them as I am afraid of losing them,

Check out the RA resouces thread on here and see if there is anything in there that can help out.

Angela, Sparking since 6/18/2012
Jacksonville, FL
*Keep moving forward! Ask for Peace, Believe in Love, & Give Understanding!

Living with RAD Team Co-leader www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=959


 current weight: 239.2 
 
287
269
251
233
215


ROXANNEBYS
SparkPoints: (12)
Fitness Minutes: (0)
Posts: 4
10/18/12 9:50 P

Send Private Message
Reply
Thanks ! I will post whenever I hear something.



KRIS-KDK663T
KRIS-KDK663T's Photo Posts: 487
10/18/12 9:26 P

KRIS-KDK663T's SparkPage
Send Private Message
Reply
Wow - sounds like you've been dealt a whole lot recently.

I won't be a whole lot of help with advice on dealing with the severity of your symptoms or meds - I'm in remission and my case was relatively moderate (if there is such a thing).

However - I'm a great cheerleader, online-hug-giver, listener and supporter!! You're welcome to add me as a SparkFriend. I think you'll find that this group can provide you with knowledge based on the experiences of those who have been there. It has been very helpful for me since I joined this group.

Please keep us posted about your diagnosis and treatments -

emoticon

Kris

Kris
It's a great day to be alive!
-----
"I can do all things through Jesus Christ, who gives me strength." Philippians 4:13


 current weight: 234.6 
 
265
245
225
205
185


ROXANNEBYS
SparkPoints: (12)
Fitness Minutes: (0)
Posts: 4
10/18/12 7:07 P

Send Private Message
Reply
Hi. I'm awaiting the final news but most doctors have said its likely I have RA. Had strokes years ago due to antiphospholipid antibodies, trigeminal neuralgia or Sjogrens (never heard the decision on that one) mom and aunt both had poly myalgia rheumatica. So the docs are leaning towards RA. Have had such terrible pain in my neck, lower back and hips for the last few weeks. I toughed it out, tried a new pillow, took Vicodin, gabapentin and methocarbomal since I had those in the house but other than feeling loopy and sleepy they didn't help. Had an injury to a finger a few months ago, I thought it was broken. The joint stayed stiff, red and swollen for months. I finally got approval for an X-ray and it was normal. Huh? It's visibly deformed and about 50% larger than the opposite side's finger. Since then things really seemed to get worse. I have numbness on one side of my back, flank area. Numbness in my right hand at times when on the computer and can't sit for more than a few minutes without pain in the back and the numbness coming.
Sorry for the long history.
I can't take NSAIDs due to having gastric bypass surgery 4 years ago.
Anyone with any suggestions?
Thanks in advance.



 
Page: 1 of (1)  
   
Report Innappropriate Post

Other Living with Rheumatoid Autoimmune Disease (RAD) Introduce Yourself to Team Forum Posts


Thread URL: http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=-1x959x50449800

Review our Community Guidelines