Lupus Support - lupus/neuopthy

Author

lupus/neuopthy

sunshine

2006-08-20, 4:26 pm

Hello I'm new to the group and have found the gruop vey motvating. I've
had lupus since the prenancy with my daughter in 1997. I was diagnosed
with it in 1998. I was diagnosed wit nueropayht in august 2005. my doc
put me on nortyptine 10mg. by this aug I was up to 225mg. I had no
relief and was taking vicdin for the pain. In the middle of july He
changed me to elavil and ultram for the pain. These medication were
even worse than the prior ones. Now I have new syptoms. my
hands,feet,arms,legs go numd all the time.my feet burn and it feels
like bugs are crawling up my legs. Now on 8/18 he ghanged me to
gabapentin. and nothing for the pain. I'm at my wits end and in so much
pain. I'm tired of modern medicine. Ive started taking aloe vera juice.
On 8/24 I'm going to start taking msm. I'm anxios to get anyones advice
..
thanks
sunshine

blades49456

2006-08-20, 4:26 pm

Go to a major medical center where there are specialists in autoimmune
diseases such as SLE. Your ordinary physician probably doesn't have the
experience to be effective with SLE.

My opinion, Blades

janers

2006-08-20, 9:27 pm

I am sorry you are in so much pain sunshine.

But I truely believe you need to see another doctor. did you have an EMG to
confirm neuropathy? Are you diabetic and controlled?
I can understand your feelings of being at wits end and I feel for you.

Now about the aloe vera juice and msm? Well that is your decisions but I
myself would not take it. Seems there are many things out there that are
Supposedly for help but are only things that take our money is all.

Gets me when the arthritis pain commercials tell you TAKE tylenol for
arthritis pain and stop the other stuff. Tylenol is good for minor aches
but it does nothing for inflammation of arthritis. It is a bad thing for
them to flaunt that in commercials.
sorry got carried away

Are you seeing a rheumatologist? That is number one thing. If you are not
satisified and still in pain maybe you need a second opinion here. And maybe
the medications you are on aren't the right kind or amount for you.

Please hang in there and ask more questions, there is good help here. Plus
there is more than lupus patients that have neuropathy. I think more testing
is required and a new view might be in order, since that doc seems to not be
helping you much

good luck
janers

Krista

2006-08-21, 8:27 am

Sunshine,

My Rheumatologist prescribed me Plaquenil and now (as of last
Wednesday) Lyrica for the numbness and pain, and it is much better. I
already take Gabapentin, Tylenol 3, and flexeril, not only for the
Fibro and Lupus but I have major back issues as well. Anyway, I still
have numbness, so they're going to do a nerve conduction study, which
I've had done before. They've also done steriod shots after doing
sonograms on my arms and hands. I used to take elavil and ultram. I
don't think it's the meds causing the numbness and pain, I think it's
the progression of the illness, at least, that's what I've come to
understand. Listen to the other ladies and see a good Rheumatologist
and have them check all that and Reynaud's Syndrome. Good luck and
Blessed Be.

Krista

sunshine wrote:
> Hello I'm new to the group and have found the gruop vey motvating. I've
> had lupus since the prenancy with my daughter in 1997. I was diagnosed
> with it in 1998. I was diagnosed wit nueropayht in august 2005. my doc
> put me on nortyptine 10mg. by this aug I was up to 225mg. I had no
> relief and was taking vicdin for the pain. In the middle of july He
> changed me to elavil and ultram for the pain. These medication were
> even worse than the prior ones. Now I have new syptoms. my
> hands,feet,arms,legs go numd all the time.my feet burn and it feels
> like bugs are crawling up my legs. Now on 8/18 he ghanged me to
> gabapentin. and nothing for the pain. I'm at my wits end and in so much
> pain. I'm tired of modern medicine. Ive started taking aloe vera juice.
> On 8/24 I'm going to start taking msm. I'm anxios to get anyones advice
> .
> thanks
> sunshine

sunshine

2006-08-21, 8:27 am

janers wrote:
> I am sorry you are in so much pain sunshine.
>
> But I truely believe you need to see another doctor. did you have an EMG to
> confirm neuropathy? Are you diabetic and controlled?
> I can understand your feelings of being at wits end and I feel for you.
>
> Now about the aloe vera juice and msm? Well that is your decisions but I
> myself would not take it. Seems there are many things out there that are
> Supposedly for help but are only things that take our money is all.
>
> Gets me when the arthritis pain commercials tell you TAKE tylenol for
> arthritis pain and stop the other stuff. Tylenol is good for minor aches
> but it does nothing for inflammation of arthritis. It is a bad thing for
> them to flaunt that in commercials.
> sorry got carried away

>
> Are you seeing a rheumatologist? That is number one thing. If you are not
> satisified and still in pain maybe you need a second opinion here. And maybe
> the medications you are on aren't the right kind or amount for you.
>
> Please hang in there and ask more questions, there is good help here. Plus
> there is more than lupus patients that have neuropathy. I think more testing
> is required and a new view might be in order, since that doc seems to not be
> helping you much
>
> good luck
> janers

Michael Roeper

2006-08-22, 8:26 am

sunshine wrote:
> Hello I'm new to the group and have found the gruop vey motvating. I've
> had lupus since the prenancy with my daughter in 1997. I was diagnosed
> with it in 1998. I was diagnosed wit nueropayht in august 2005. my doc
> put me on nortyptine 10mg. by this aug I was up to 225mg. I had no
> relief and was taking vicdin for the pain. In the middle of july He
> changed me to elavil and ultram for the pain. These medication were
> even worse than the prior ones. Now I have new syptoms. my
> hands,feet,arms,legs go numd all the time.my feet burn and it feels
> like bugs are crawling up my legs. Now on 8/18 he ghanged me to
> gabapentin. and nothing for the pain. I'm at my wits end and in so much
> pain. I'm tired of modern medicine. Ive started taking aloe vera juice.
> On 8/24 I'm going to start taking msm. I'm anxios to get anyones advice
> .
> thanks
> sunshine

I've had exactly the same pain/discomfort that you're describing since
1980. Had evry test in the world for it. month ago (6 weeks ago
really) my pain specialist put me on CYMBALTA 60mg 1x/day and the pain
and discomfort went away. I was told theres a whole new group of drugs
available that were not available 25 years ago. CYMBALTA took over 4
weeks to start working so be patient. Good lick to you. Let me know how
it works (You can gt samples too, BTW. At least here in Oregon.

David Sontag

2006-08-23, 4:29 pm

Hi Krista,

I also have a neuropathy in feet from Lupus. I to am on Gabapentin and
want to try Lyica.

Are you taking both at the same time???

I am asking cause my current MD want me to be off Gabapentin for a
full week before I take the Lyrica .... this would be too much pain
for me to make the transition .... os depending on your answer maybe I
need to see a different MD.

Thanks

David

On 21 Aug 2006 01:46:49 -0700, "Krista" <kdp8575@gmail.com> wrote:

>Sunshine,
>
>My Rheumatologist prescribed me Plaquenil and now (as of last
>Wednesday) Lyrica for the numbness and pain, and it is much better. I
>already take Gabapentin, Tylenol 3, and flexeril, not only for the
>Fibro and Lupus but I have major back issues as well. Anyway, I still
>have numbness, so they're going to do a nerve conduction study, which
>I've had done before. They've also done steriod shots after doing
>sonograms on my arms and hands. I used to take elavil and ultram. I
>don't think it's the meds causing the numbness and pain, I think it's
>the progression of the illness, at least, that's what I've come to
>understand. Listen to the other ladies and see a good Rheumatologist
>and have them check all that and Reynaud's Syndrome. Good luck and
>Blessed Be.
>
>Krista

Beverley

2006-08-23, 4:29 pm

I was on Tegretol for a long time and it is similar to Neurontin, which is
the market name for Gabapentin. After a while, I lost all sensation in my
fingers and had to be very careful in the kitchen or I could burn them. I'm
not saying it is the same reaction that you are having but I know that the
numbness is a common SE of Tegretol. I also know I became a total witch for
at least a week or more whenever I came off of Tegretol. Apparently because
of my reactions to the Tegretol, my doctor feels as though Neurontin is not
an option for me. You might want to check www.rxlist.com and see what is
said about Gabapentin/Neurontin.
Bev

"David Sontag" <acudoc@bellsouth.net> wrote in message
news:705pe2pd96o0uof3eckcc12a0bokus11u1@4ax.com...
> Hi Krista,
>
> I also have a neuropathy in feet from Lupus. I to am on Gabapentin and
> want to try Lyica.
>
> Are you taking both at the same time???
>
> I am asking cause my current MD want me to be off Gabapentin for a
> full week before I take the Lyrica .... this would be too much pain
> for me to make the transition .... os depending on your answer maybe I
> need to see a different MD.
>
> Thanks
>
> David
>
>
>
> On 21 Aug 2006 01:46:49 -0700, "Krista" <kdp8575@gmail.com> wrote:
>
>

Marie Davis

2006-09-09, 9:28 pm

"Mo& Dani" <enbawie@sbcglobal.netOn 20 Aug 2006 08:30:53
-0700, "sunshine" <lisacole1965@sbcglobal.net> wrote:

>Hello I'm new to the group and have found the gruop vey motvating. I've
>had lupus since the prenancy with my daughter in 1997. I was diagnosed
>with it in 1998. I was diagnosed wit nueropayht in august 2005. my doc
>put me on nortyptine 10mg. by this aug I was up to 225mg. I had no
>relief and was taking vicdin for the pain. In the middle of july He
>changed me to elavil and ultram for the pain. These medication were
>even worse than the prior ones. Now I have new syptoms. my
>hands,feet,arms,legs go numd all the time.my feet burn and it feels
>like bugs are crawling up my legs. Now on 8/18 he ghanged me to
>gabapentin. and nothing for the pain. I'm at my wits end and in so much
>pain. I'm tired of modern medicine. Ive started taking aloe vera juice.
>On 8/24 I'm going to start taking msm. I'm anxios to get anyones advice
>.
> thanks
> sunshine

Hi Sunshine,

I was just put on Gabapentin and at first I didn't take my pain meds
with it. Silly me thought I wouldn't need them. After a couple of
weeks I called the doctor and was told to take both. I'm on Etodolac
for the pain, this is the third pain med in 8 years, I took Daypro for
about 5 years, there was one between the that one and the Etodolac. I
can't remember which one that was except that it tore up my stomach.
The combination of the two now is great. I would talk to your doctor
and ask if the combination is the way to go. I'm up to 600 mg of the
Gabapentin, all at night. I still get muscle spasm during the day but
at least I sleep at night now.

Good luck to you!

Marie