Update, saw the rheumy
#295329 - 01/05/07 09:21 AM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Well, good new/bad news.....good news, my ra is under control according to my blood work. bad news, is that i have neuropathy. This really does explain a lot though.
Some of you may remember that i developed reflex sympathetic dystrophy a few years back after a serious ankle sprain. Apparently this can trigger other nerve damage. As can auto-immune diseases, such as ra.
Apparently the swelling in my hands and feet are not from the ra but from neuropathy. This is also whats causing me to be so dizzy and uncoordinated. It can cause abdominal bloating and C or D. It can cause urinary incontinence, I have had a few problems with leaking when i sneeze or cough to hard!  It causes shaking and weakness, tingling and pain. It can also cause intolerance to heat and cold and pain with the slightest touch. Blurred vision, dry eyes and mouth. The list goes on, it explains about 95% of my symptoms.
There doesn't seem to be an easy treatment though. She gave me Lycra which is supposed to help with nerve pain. She gave me lots of Norco instead of Vicodin, its basically the same thing but with less Tylenol in it so I can take more without the toxicity to my liver.
I am also low of vit d and calcium so she has me taking a boat load of each. She doesn't feel the steroids will help with this kind of pain and swelling so I can decrease 1mg every three weeks so it will be another 6 months or so before I am off of those.
I see her again in 6 weeks and will change the Zoloft to cymbalta if still not feeling better. I am to continue with all the other ra meds though.
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Taking it one day at a time.....
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OMG Michele!! While I am happy you have an answer to all of the pain and swelling, wow! I just checked online about neuropathy and it doesn't sound very good - you poor sweetheart! At least it explains everything, but still.
As always, I wish you all the best!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up! 
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I was thinking about you over the holidays, wondering how you were holding up. First, I want to say hooray for finally getting the RA under control. But boo to the neuropathy! I've been dealing with some nerve problems myself - burning tongue, hands and feet - but it's definitely no where near what you're experiencing and my rheumy was like, "Yep, that's strange. Well, as long as it doesn't get any worse, we'll just leave it." 
Big hugs, Michele. I hope you have more good news this year.
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Thanks girls. I agree, I am happy to finally have a name to my pain but it doesn't seem like it something that's going to go away anytime soon and not much helpful treatment out there. A lot of my symptoms make more sense now but what good is that if there isn't much you can do to fix the problem? 
I had a series of 8 spinal injections in my back when I had the RSD in my foot. If my hand doesn't get better, I may have to look into that route but its very risky and no guarantees but my hand looks like the pillsbury dough boys and it makes working/living very hard. It also makes sense why my socks have been bothering me so much lately, to the point that I have cut the elastic off them all! I only have one blanket that I can stand to touch my skin and finding something to wear to work is next to impossible. I only shave when absolutely necessary because it hurts. I tremble so much I can't even drink out of a regular cup because I spill it all over! Well, at least I am not mental, or not at least totally mental! 
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Taking it one day at a time.....
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WOW... as much as the name of it sucks... you have GOT to have some releif just KNOWING what it is.... best of luck to you sweetie in your treatments.... keep us posted. I'm gonna email my Mommy and let her know....she asks about you.
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www.facebook.com/shell.marr
www.myspace.com/shellmarr
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Well, I'm glad that you have some answers, finally. And I hope that some of the new tactics will help to get your pain and swelling under control. As always, I'm wishing you the best. And, (I hope this is okay), from time to time I update my mom on your story, and she always says a prayer for you.
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If you're not dead, you've still got time.
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Thanks girls! No problem talking to your mums about me! I appreciate the thoughts and prayers!
I do feel a bit of a relief knowing what is wrong, somehow validated but the more I read, the more I find its a pretty crappy thing to have and not easily fixed. Leave it to me to be difficult! It does seemt o be common in people with auto-immune issues and connective tissue issues but mostly you hear about it from diabetics.
Its been a really busy afternoo and looking forward to going home very soon and relaxing!
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Taking it one day at a time.....
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Hi, Michele!
I'm sorry the news/diagnosis isn't better, but at least you have more of a direction to work with.
Question: Have you considered acupuncture at all? It's something more gentle that you could use to try to restore some balance/wellness to your body. You wouldn't have to give up your meds or anything, but you could approach it from a more homeopathic standpoint, too. Some insurance plans cover it. Mine doesn't, and she charges me about $50 a visit. That's not cheap but not prohibitively expensive, either.
Just something to think about. Gentle {{{{{hugs}}}}.
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Christine
Those who can do; those who want it done better teach.
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Good to hear you have a more definitive diagnosis. Even if the treatment isn't clear at this point at least you're not left guessing anymore. And some peace of mind can do a lot for you. Hopefully the new meds you're starting will be able to help, and hopefully you'll be able to completely stop the steroids, even if it takes a while. I pray for continued improvement for you!
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
 
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Oh my goodness! I'm glad they've finally figured out what's been causing you all these problems, but I'm sorry that it's such a serious condition. Sometimes it's just a relief to know what's causing the problem, knowing you're not crazy & it's not just all in your head (at least that's how I felt). I hope this is your year! Better health & less pain! Good luck! My thoughts are with you! 
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IBS-A...I can never make up my mind 
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