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Rheumotoid Arthritis support thread.

 
 
Reply Sat 10 Jan, 2009 05:30 pm
Any interested parties wishing to share stories, pain relief ideas, coping support?
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Type: Discussion • Score: 10 • Views: 5,567 • Replies: 26
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martybarker
 
  1  
Reply Sat 10 Jan, 2009 05:32 pm
I hate when I misspell in my thread title!
ossobuco
 
  1  
Reply Sat 10 Jan, 2009 05:33 pm
@martybarker,
I threw in some tags in case people see this while googling..
of course it looks like I'm saying Ra, Ra.
martybarker
 
  1  
Reply Sat 10 Jan, 2009 05:34 pm
@ossobuco,
Thanks Osso, I'm not sure how to do that.
NickFun
 
  1  
Reply Sat 10 Jan, 2009 05:56 pm
Though I have never had Rheumatoid, I suffered from Osteoarthritis in my knees for 15 years. Doctors told me there was nothing that could be done. At age 36 I was told that I would need knee replacements before I was 50. When I was 37 I played tennis with a friend one day and the next day I could barely walk. I went into a Whole Foods Market and asked them what they has for arthritis. A young sales clerk recommended Glucosamine/Chondroitin. It cost $50 a bottle but I was in so much pain I didn't care. I started taking it. A week later I was at a friends house and had to sit in one of those really low lawn chairs. I grimaced at the thought. However, when it came time to get up I stood up with no pain! It has been 12 years and my arthritis is cured! I no longer even need the medication. Now I run, climb, squat and do all the things I missed out on in my 20's even though I am now 49.
Izzie
 
  1  
Reply Sat 10 Jan, 2009 05:57 pm
@martybarker,
Hey Marty

Has the methotrexate kicked in yet?

Not much help in supporting right now - hands and feet are totally cr*p, big pain. Surgery a month today. With the new A2K, tags might bring in some newbies who can advise.

roger
 
  1  
Reply Sat 10 Jan, 2009 06:00 pm
@martybarker,
If you misspelled anything, I'm sure I wouldn't know.
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ossobuco
 
  1  
Reply Sat 10 Jan, 2009 06:05 pm
@martybarker,
Ha, I got rid of the Ra.

When you post a thread, there's a box at the bottom for listing tags. Others will add tags too, at least sometimes. Sometimes an early misspelling (many of us have cringed at our own) can be overridden, at least in the tags, by other people tagging.
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ossobuco
 
  1  
Reply Sat 10 Jan, 2009 06:09 pm
@NickFun,
A rheumatologist told me that glucosamine/chondritin works for some (it wasn't all that big a percentage). You may also have just pulled a ligament on top of your "normal" osteo. I think I remember that it doesn't "work" right away. Another friend here finds it an incredible help.

Ah, the price has gone down some, at least for me..
martybarker
 
  1  
Reply Sat 10 Jan, 2009 06:19 pm
@Izzie,
Izzie,
I got a second opinion, well not exactly a second opinion. I just wanted to make sure I had a good feeling about who was treating me and I liked the second Dr way better. He increased my prednisone and switched me to injectable methrotrexate.
My foot no longer feels like it has a vice on it and the finger swelling has gone down but I still have a troublesome finger on my right hand as well as my right wrist. Really trying to fight the fatigue.
martybarker
 
  1  
Reply Sat 10 Jan, 2009 06:20 pm
@martybarker,
I've been adding in the glucosamine on occassion
NickFun
 
  1  
Reply Sat 10 Jan, 2009 07:13 pm
@ossobuco,
Hi Osso, as far as I know I had no torn ligaments. Three doctors confirmed I had osteo. I had pain in both knees every day for 15 years. It was from distance running and extreme hiking. I have heard that it doesn't work for everyone and my case was downright miraculous. Also, my elderly friend George was diagnosed with arthritis in his back and he gained near instant relief and has remained pain free for several years.
ossobuco
 
  1  
Reply Sat 10 Jan, 2009 09:25 pm
@NickFun,
I have osteo but not badly and it's age appropriate as I push my way towards a hundred. I'm happy if it is working for you as it is for another friend.
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roger
 
  1  
Reply Sat 10 Jan, 2009 10:22 pm
@martybarker,
No good. It takes awhile for it to start working. The good effects carry on for a little while after stopping, but it needs to be taken on a regular basis, in my exprience. It does work for me, but this osteoarthritis.
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NickFun
 
  1  
Reply Sun 11 Jan, 2009 01:37 am
My experience was quite dramatic and very rare. I was cured of my arthritis within 3 years and it has never returned. I have no joint problems at all and I am pushing 50. I took it regularly for those 3 years but have never again found the need to take it.
dlowan
 
  1  
Reply Sun 11 Jan, 2009 01:57 am
@NickFun,
Greenlipped mussel oil and large doses of fish oil, as well as the glucosamine seem to help me a lot.
roger
 
  1  
Reply Sun 11 Jan, 2009 02:16 am
@dlowan,
Sure glad I googled that. Thought you were pulling our collective leg. mussels with green lips!
Izzie
 
  1  
Reply Tue 13 Jan, 2009 06:46 pm
@roger,
Goodevening ...

I.am.worn.

Went and saw the Occ Therapist today " was referred last JUNE.

Pathetic " me, not her. I now have all sorts of contraptions to put on my hands " soft splints, metal splints and support splints " and... good grief " WHY WHY WHY was I not given finger ring splints before " what a difference in the space of a few hours " HUGE " massive " I can use my hands (kinda). They are so simple. I had silver ring splints in the USA " that was 18 years ago " and they didn’t fit my misshapen fingers any longer " these wee moulded ones I got today are JUST BRILLIANT. Bionic feet, bionic hands. I believe my hands were pain free for a few hours. Have slept a little since then (exhausted) and swelling has come back up... but oh " what a difference.

It was so good to talk to someone face to face who deals with people who struggle with fatigue and pain " I talked, she really understood " my hands could do with surgery and she believes three fingers would benefit " right now, thats not an option " but she really understood everything I felt and said. It was so weird " as she moved my left pinky finger " how it sticks out to the side " I never even noticed before that it sticks out " it was almost embarrassing " really laughed as she kept trying to align it... and it throws itself back out. NEVER EVEN NOTICED IT BEFORE. It’s like it doesn't belong on my left hand " has a life of it’s own. The right pinky is twisted " no hope for that one. She understood I’m tired and she said all the things I don’t say out loud. Like, to grate cheese hurts, to not be able to open the milk " pisses me off, not being able to move when I wake up, not being able to walk up or down the stairs without having to imitate a crab, not being able to pick up a cup without two hands, can't do up buttons, zip a coat " it’s the little things... (not every minute... just a lot right now), not so much the big things " and just the constant damn fatigue and not sleeping coz it hurts to sleep even when incredibly tired. She "got it" why I hate to ask people to do things - the frustration of it - having to rely on my little fella as a "young carer" - bloody sh!te that is. He doesn't notice it any more - I do.

She gave me some “support” gloves to wear at nite (ugh " how attractive - not that that is an issue these days) to try and reduce the hands swelling and clawing overnite (nice a?). Also, some foam wrap to put around a pen as I can’t use my hands to write.

Little things " hopefully will make a difference.

Pain’s a big issue right now which is making me lower than usual " RA and SLE are wearing me out.

So.... Marty and anyone else who has problems with finger joints... ask the OT about these! Sooner the better.

http://i277.photobucket.com/albums/kk41/LzzieIzzie/SDC10639.jpg

http://i277.photobucket.com/albums/kk41/LzzieIzzie/SDC10622.jpg

http://i277.photobucket.com/albums/kk41/LzzieIzzie/SDC10629.jpg

Different splints for different joints, thumb / wrist / pain levels /support.


Anyhoo.... she’s coming to see me at my home next week. She’s also contacting the “making shoes” people who I was referred to last October and still haven’t had an appointment with. That won’t be much use for the next few months with surgery on my right foot in less than a month. Who knows, maybe by the time I see them I hope to be semi walking.

Bad few days... sorry. Dunno if this will be a help or hindrance to you Marty.
ehBeth
 
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Reply Tue 13 Jan, 2009 06:52 pm
@Izzie,
I am soooo glad you met with a good O.T., Izzie. I consider those folks close to gods/goddesses in terms of resources they can suss out. Love 'em.
0 Replies
 
martybarker
 
  1  
Reply Tue 13 Jan, 2009 08:25 pm
@Izzie,
Izzie, good to hear you got some splints to help. I've got the glove for swelling and the velcro type wrist splint that I wear at night to keep me from bending my wrist and waking up with lobster claws.
Today I had my first relatively pain free day. My bad finger almost folded all the way in when I made a fist.
Yesterday was tough. My first time I injected myself, that was so hard considering I have fainted in the past from painful stimuli. But I did it with the supervision of my RN co-workers. However, the methotrexate makes me nauseous and I couldn't eat until dinner time.

Izzie, I've never seen those finger ring splints, I may have to ask about those.

Hope you feel way better in the morning. Thanks for your words!
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