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canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 11/22/2007 10:15 AM (GMT -7)   
Good Day everyone and here's hoping you have a pain free day...
 
Does anyone on here suffer from Neuropathy? I have been having and odd sense of tingling but only in 3 fingers on one hand. I did find out the hard way last week that I have Raynauds but I didn't think it made your fingers tingle when you were not in the cold? I am just wondering what anyone's experiances were as I am so new to all this that is happening to me.
 
Thanks
 
Angela
UCTD Plaquenil 400 mg and  Diclofenac 150 mg on really bad days Tylenol Arthritis.  and omega 3 with Moducare supplements


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/23/2007 7:43 AM (GMT -7)   
Angela, I have some peripheral neuropathy in my hands and feet. Mine is sometimes a tingling, but mostly it's a burning pain in my fingers and toes. The low dose of neurontin I take helps a lot. Talk to your doctor because there are meds that can help if you are interested. I hated adding another med to my pharmacy, but it really does help.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 11/26/2007 9:44 PM (GMT -7)   
Thanks hippi,

Yup burning started now too. We seem to have a lot of similar symptoms I too am UCTD, Raynauds and Sjogrens as well.

I need to update my profile
UCTD Plaquenil 400 mg and  Diclofenac 150 mg on really bad days Tylenol Arthritis.  and omega 3 with Moducare supplements


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted Today 3:39 PM (GMT -7)   
Hi Hippi,
 
I saw my neurologist and am on the same med you are now too. Today was just day one. It made me really doubt my lupus dx as it seems like NO ONE has neuropathy who has lupus.
 
 
Angela
UCTD and sjogrens ( terrible dry mouth) Plaquenil 400 mg with 150mg of diclofenac as needed, all biotene products and refresh liquigel eye drops 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted Today 6:49 PM (GMT -7)   
Angela, I wouldn't let having neuropathy make you doubt having lupus. I did a quick internet search about neuropathy and lupus and came up with a bunch of stuff that connects the two. If I remember right, there have been quite a few people on the forum since I've been here who have had neuropathy.

Here's a copy of part of an article from CNN health: "Peripheral neuropathy often affects people with diabetes and autoimmune diseases such as rheumatoid arthritis and lupus."

This and other articles I can across all said the same thing that neuropathy can be a common thing for people with lupus and other autoimmune diseases.

How is your Sjogrens? Mine is the worst it has ever been. I have the same liquigel eye drops as you do for my eyes, but I have to put them in a lot now and my mouth is so dry it's making me crazy. I think the dryness of the winter is making my Sjogrens symptoms worse. My nose is really dry too. Isn't all of this fun???
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted Today 7:11 PM (GMT -7)   
I have lupus-caused/related neuropathy....don't know where the idea they can't be related might have come from...

it isn't permanent (so far) but comes and goes as lupus inflammation comes & goes

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted Today 8:58 PM (GMT -7)   
I have the neuropathy, too, in my hands/lower arms and my feet. Like Lynnwood, mine comes and goes as my flares come and go. I have lupus and RA, as well. Hopefully your new med will help!
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted Today 9:12 PM (GMT -7)   

Oh well thanks for responding everyone it was my GP who said that he has never seen a lupus patient with neuropathy. Mine isn't constant either it's more like little electric shocks all over off and on all day sometimes it's really bad and sometimes not so bad.

UGH Hippi my mouth is GROSS not so bad during the day as I chew gum etc but the morning I dread waking up for 1) fear of my eye lid ripping my cornea off and  2) the roof of my mouth ripping my tongue. I thought lupus was bad and the the things it brings, sjogrens is actually worse.

I am going to see my opthamologist to discuss getting punctual plugs in eyes I know a few people with dry who have had great success with them. Some say their eyes water too much now and they have to carry tissue. I will GLADLY take that over this current dry state.

 

 


UCTD and sjogrens ( terrible dry mouth) Plaquenil 400 mg with 150mg of diclofenac as needed, all biotene products and refresh liquigel eye drops 


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 12/7/2007 7:34 AM (GMT -7)   
Yes, mornings are terrible for my Sjogrens. My eyelids are stuck to my eyes and my my mouth is bone dry and the outside of my mouth has dry crusty stuff on it. I see my rheumy on the 18th and am going to talk to him about it. I might have to try to gum for my mouth. I drink and drink, but my mouth always feel dry.

I'm glad you got more validation from other members here about lupus and neuropathy. The neurontin should help some. I take mine at night because it makes me sleepy and it helps me sleep well.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Amcrazy
Regular Member


Date Joined Aug 2005
Total Posts : 194
   Posted 12/8/2007 11:58 PM (GMT -7)   
canuckgirl,
I have SLE, Sjogren's, Raynalds, fibromyalgia, etc etc blah blah blah .....
definitely suffer from neuropathy. Have tried neurontin but the side effects got to me. Right now am trying the Lyrica. So far so good .... like the guy who jumped off the 12 story building and they heard him passing the 6th floor saying ..... sooooo farrrr sooooo gooood lol
pain and numbness in the hands could also be tendenitis. right now, i even have tendenitis in my shoulder ... it really hurts. dr wants to do some surgery on it .... yuck.
i have found myself blaming every thing on lupus. It seems that it can affect just any and everything and it is a great scapegoat ... Im tired ... oh its the lupus. .... im hurting ...its the lupus .... gaining weight ... lupus .... losing weight ... lupus ..... losing hair .....LUPUs....depressed .... lupus .....cant remember poop .... lupus... anything that is not normal ... and some things that probably are .... i lay it all on the lupus .... lol hey why bother having this disease if you can't blame everything on it?!?!?
Also, when it comes to drs/ you go to 100 drs... you get 100 different opinions. I have probably gotten more information and better advice from this forum than from any of the drs. I have gone to.
Rhonda
Reflection and experience supply us with wisdom; study and labor supply us with learning; but wit seizes with an eagle eye that which escapes the notice of the deep thinker and elicits truths which are in vain sought for with any severe efforts.

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