Re: Janet

[Guest guest]

Tom: Hi! Yes I also have been falling down alot, since the RSD and the Fibro have been diagnosed. It seems like it's been more often then before. I went to see my doctor on Friday, he said I have lost alot more strength in both my legs since November. I have fallen down alot lately. My legs just give out on me, and I keep losing more and more strength. I used to walk 3 miles a day after I had the nerve surgery, to get back to my job. But I don't do that anymore, I sure wish I could right now. I am just glad to know someone else has heard of the Merglia Paresetica (sp?). I am lucky if I walk a few blocks now, sure do miss the walking though. This is where I used to be able to lose my weight, now that I have been on all these meds for 7 years, I have gained so much weight from all of the meds. But I can't take no more surgeries, as I have no spleen and have a hard time healing from sickness and infections. I had a blood disease after my first daughter was born, ITP

low blood platelets. Now they have found a white matter on my brain and I wonder what this is from, the RSD or what? At first they thought I had MS and was diagnosed Negative for this. I had two normal spinal taps for this, so I wonder what this is caused by, I hope you are feeling better tonight. It's nice having friends that have the same disease as you do. Not many people understand this disease or anything like what we all are having to deal with. It's not fair I know. Have a pain free day. JanetTom wrote:

I read you email your in a real jam! Your the first person I've met with RSD in the hip, Yes I have lighting bolts that attack my thigh, groin, and the base of my knee caps, this jolts to me are more like someone is holding a torch on me and it feels like Iam being burnt, this started even while under sedation (heavy stuff) in the intensive care ward. Have your legs given out on you ? mine give out it appears when I pick-up my leg and I get a "lighting bolt burn" I believe it's me causing the weakness. In some manner I believe Iam shutting myself off to avoid the pain somehow thru my brain? Iam told by the University doctors that this is probably what is going on. Please let me know if your legs have a tendacy to get weak when you have a flash of burn pain? Also, is there anything??? I can do to help you out?? Best Regards

Tom

[Guest guest]

-------Original Message-------

But I can't take no more surgeries, as I have no spleen and have a hard time healing from sickness and infections. I had a blood disease after my first daughter was born, ITP low blood platelets. Janet

=============================================================================

Janet,

Where you said that you have a hard time healing.....I wanted to tell you if you didn't know already....that RSD will also make it to where you don't heal as fast anymore either.

Like if you get a cold, or the flu.....if you used to normally get over them like in a day, couple of days, or a week....forget it. Now, it may take 2 weeks. Its something to do with our Immune Systems.

I could explain it better...but then it would take forever! lol. I'll go this way though...the short version!

Here's an example:

Normally, your Immune System is at 100%....and, if you get sick, each area of your body is able to fight the germs and bacteria.

Now, with RSD, say 30% of your Immune System is fighting the RSD. That only leaves 70% of your Immune System to fight off any colds or flu. If you get a cold, part of your Immune System is already gone fighting....so that means that the other 70% has to try and compensate.....leaving one area as a hole, where anything and everything can sneak in.

Ok, say that the 30% that is gone fighting the RSD is actually supposed to be protecting your nose....so that you don't breathe in any airborn germs.

Well....since that is an open area now....the rest of your Immune System has to work harder, to cover your nose too. That means that the parts that normally protects your mouth, ears, eyes from infections....isn't as strong now because parts of those areas are now trying to take up the slack in your nose.

lol...ok, I think I'm confusing myself tonite!

Because of the RSD, the Immune System is weakened in areas. There....thats what I meant!

Tonia

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Janet,

You need to tell your doctor about the burning and swelling. The meds that will help this is: Neurontin, Topamax, Gabitril, Tripitil and Zonegran. I really wouldn't go on the Neurontin though in your case, because of the water retention and swelling that you are having.

These meds SHOULD help with the swelling along with the burning....but Neurontin seems to make a person Gain weight, and it really seems that right now, THAT is one thing that you don't need! One of the main side effects of Topamax is weight LOSS....but, being just a side effect....it doesn't mean that you will lose weight on it. A lot of people has lost weight after being put on it....but, I'm one of those that didn't, and I was on it for a year.

These meds take care of the burning, spasms, electrical jolts and cramping in the muscles.

They are actually Anti-Seizure medications.

So far, I have found out that its the BT med that I have that is making me sick/throw up. I can take it...and within 10-15 minutes, I'm throwing up. So, I stopped taking it...and I feel better!

As for the dizziness....I found out that I have a severe ear infection in both ears! So, I'm hoping that once that goes away....the dizziness and all of that goes away!!!

Right now, I'm on 10mg of the Methadone...every 6 hours. And, its working GREAT! I wouldn't trade it for anything in the world now....lol

Hope that your swelling goes down, and that your flare gets under control! Thanks for the info....I really appreciate it!

Tonia

-------Original Message-------

Hi Tonia: I just got your message, yes there are some bad side effects of Methadone when you first take it. I remember when I first started out, in 2000 I was put on a small dosage, but alot more than what you are prescribed right now. I can't remember the exact dosage, but I will look it up and let you know at a later time. As for what I went through with the drug. I was so sick, vomiting, stomach upset, dizzy ( very dizzy), it was so bad I had to stop the drug. I told my doctor there was no way I could take this drug, he said he would lower the dosage, and the side effects would disappear shortly, once my system got used to it. Well he was right, it took a couple of weeks for the side effects to settle down. My doctor told me this was the best medicine when it came to severe pain, because you don't get addicted to this. You don't get a high, like other drugs can give you. Like Morphine, and the others to many to count. But in any case, I am glad I stayed with the Methadone, because it has helped my pain dramactically, I mean I swear my by it. I would not be able to walk without this drug, I take 4 tablets ( 40 mgs) daily. But I have been on this drug going on 4 years now, I take Dilaudid for the break-thru. I don't care for that drug, he wants to try me on the Duragesic Patch. If that don't work then the Morphine Pump. But like I have said before, I have no SPLEEN, due to a blood disease in the past. I can't fight infections, disease, and sickness without alot of help from all kinds of meds and it takes me months to heal from surgeries. So really this surgery would be out also, I can't take that change, of having the RSD spread. Also, I have a SEVERE BURNING RED RASH, with alot of SWELLING. My doctor told me that I am carrying 15 pounds of water retention. I am taking 90 mgs, of a diarectic ( sp?). I have been MISERABLE with the BURNING PAIN, and not even Methadone alone can take this pain away!!! But it does help take the edge off, and that is better than nothing!! Also, I have the FIBROMYALGIA and that too has gotten alot WORSE!!!!! I have fallen down so much lately, because of the strength in my legs. Sorry for a novel, but it's nice to talk to others that no what I have been feeling. I have no friends around here that really understand what I am going through. So I am glad I joined this group, you all have been real good to me. Thanks!!! Janet

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

,

You and I seem to have similar reactions to things. I'm on Neurontin - 600mg 3 times a day - and I think my appetite is worse now too. I find I have a hard time eating "normal" food. It like gets stuck in my throat and I can't swallow it. I eat ALOT of cereal, hot and cold, or light breakfast foods like pancakes or french toast. I can eat pasta pretty good too but meat seems to be the hardest. I know, I'm strange too! I'm trying to gain weight since I've lost quite a bit with all this pain and medication so I have to drink those Ensures every day. They were pretty bad at first but I've gotten used to them. Anyway, I guess some people have different reactions to the Neurontin. Hope everyone had a great day...Lori

[Guest guest]

,

Wow, I'm so amazed!!!!! I thought I was losing it that I couldn't swallow a normal meal, it is such relief to know I'm not the only one. Don't take that the wrong way, I wish you were not going through that too but it makes me feel a little better not to be alone....if that makes sense. I told my doctor about it but that's another thing he has not called me back on. Hopefully I will get some answers Thursday. If he gives me any advice about it I will let you know. I'm just like you, I can handle a couple bites and then I force it down with a drink, but I can only do that for a couple more bites. I can eat some fruits too, cereal, ice cream, pasta is a little better than meat if you haven't tried that, bread is kind of ok too...just some other things you might want to try for nutrition. Have a good day....Lori

[Guest guest]

I am allergic to all of those nerve meds, so it is real hard on me, lost so

much weight on Topamax they were going to put me on feeding tube, so i

stopped that one med and put some weight bac on...

Pinkie

>

>Reply-To: RSD-CRPSofAmerica

>To: <RSD-CRPSofAmerica >

>Subject: Re: Janet

>Date: Tue, 23 Mar 2004 01:55:36 -0600 (Central Standard Time)

>

> Janet,

>You need to tell your doctor about the burning and swelling. The meds that

>will help this is: Neurontin, Topamax, Gabitril, Tripitil and Zonegran. I

>really wouldn't go on the Neurontin though in your case, because of the

>water retention and swelling that you are having.

>

>These meds SHOULD help with the swelling along with the burning....but

>Neurontin seems to make a person Gain weight, and it really seems that

>right

>now, THAT is one thing that you don't need! One of the main side effects of

>Topamax is weight LOSS....but, being just a side effect....it doesn't mean

>that you will lose weight on it. A lot of people has lost weight after

>being

>put on it....but, I'm one of those that didn't, and I was on it for a year.

>

>These meds take care of the burning, spasms, electrical jolts and cramping

>in the muscles.

>They are actually Anti-Seizure medications.

>

>So far, I have found out that its the BT med that I have that is making me

>sick/throw up. I can take it...and within 10-15 minutes, I'm throwing up.

>So

> I stopped taking it...and I feel better!

>

>As for the dizziness....I found out that I have a severe ear infection in

>both ears! So, I'm hoping that once that goes away....the dizziness and all

>of that goes away!!!

>

>Right now, I'm on 10mg of the Methadone...every 6 hours. And, its working

>GREAT! I wouldn't trade it for anything in the world now....lol

>

>Hope that your swelling goes down, and that your flare gets under control!

>Thanks for the info....I really appreciate it!

>

>Tonia

>

>-------Original Message-------

>

>Hi Tonia: I just got your message, yes there are some bad side effects of

>Methadone when you first take it. I remember when I first started out, in

>2000 I was put on a small dosage, but alot more than what you are

>prescribed right now. I can't remember the exact dosage, but I will look it

>up and let you know at a later time. As for what I went through with the

>drug. I was so sick, vomiting, stomach upset, dizzy ( very dizzy), it was

>so bad I had to stop the drug. I told my doctor there was no way I could

>take this drug, he said he would lower the dosage, and the side effects

>would disappear shortly, once my system got used to it. Well he was right,

>it took a couple of weeks for the side effects to settle down. My doctor

>told me this was the best medicine when it came to severe pain, because you

>don't get addicted to this. You don't get a high, like other drugs can give

>you. Like Morphine, and the others to many to count. But in any case, I am

>glad I stayed with the Methadone, because it has helped my pain

>dramactically, I mean I swear my by it. I would not be able to walk without

>this drug, I take 4 tablets ( 40 mgs) daily. But I have been on this drug

>going on 4 years now, I take Dilaudid for the break-thru. I don't care for

>that drug, he wants to try me on the Duragesic Patch. If that don't work

>then the Morphine Pump. But like I have said before, I have no SPLEEN, due

>to a blood disease in the past. I can't fight infections, disease, and

>sickness without alot of help from all kinds of meds and it takes me months

>to heal from surgeries. So really this surgery would be out also, I can't

>take that change, of having the RSD spread. Also, I have a SEVERE BURNING

>RED RASH, with alot of SWELLING. My doctor told me that I am carrying 15

>pounds of water retention. I am taking 90 mgs, of a diarectic ( sp?). I

>have been MISERABLE with the BURNING PAIN, and not even Methadone alone can

>take this pain away!!! But it does help take the edge off, and that is

>better than nothing!! Also, I have the FIBROMYALGIA and that too has gotten

>alot WORSE!!!!! I have fallen down so much lately, because of the strength

>in my legs. Sorry for a novel, but it's nice to talk to others that no what

>I have been feeling. I have no friends around here that really understand

>what I am going through. So I am glad I joined this group, you all have

>been real good to me. Thanks!!! Janet

_________________________________________________________________

Get tax tips, tools and access to IRS forms – all in one place at MSN Money!

http://moneycentral.msn.com/tax/home.asp

[Guest guest]

Exactly what does Topamax do for a person? I know I have read it before but

can't recall it now. Could you please tell me what it is given for? Thank

you

s Momma

JoAnn

Re: Janet

> >Date: Tue, 23 Mar 2004 01:55:36 -0600 (Central Standard Time)

> >

> > Janet,

> >You need to tell your doctor about the burning and swelling. The meds

that

> >will help this is: Neurontin, Topamax, Gabitril, Tripitil and Zonegran. I

> >really wouldn't go on the Neurontin though in your case, because of the

> >water retention and swelling that you are having.

> >

> >These meds SHOULD help with the swelling along with the burning....but

> >Neurontin seems to make a person Gain weight, and it really seems that

> >right

> >now, THAT is one thing that you don't need! One of the main side effects

of

> >Topamax is weight LOSS....but, being just a side effect....it doesn't

mean

> >that you will lose weight on it. A lot of people has lost weight after

> >being

> >put on it....but, I'm one of those that didn't, and I was on it for a

year.

> >

> >These meds take care of the burning, spasms, electrical jolts and

cramping

> >in the muscles.

> >They are actually Anti-Seizure medications.

> >

> >So far, I have found out that its the BT med that I have that is making

me

> >sick/throw up. I can take it...and within 10-15 minutes, I'm throwing up.

> >So

> > I stopped taking it...and I feel better!

> >

> >As for the dizziness....I found out that I have a severe ear infection in

> >both ears! So, I'm hoping that once that goes away....the dizziness and

all

> >of that goes away!!!

> >

> >Right now, I'm on 10mg of the Methadone...every 6 hours. And, its working

> >GREAT! I wouldn't trade it for anything in the world now....lol

> >

> >Hope that your swelling goes down, and that your flare gets under

control!

> >Thanks for the info....I really appreciate it!

> >

> >Tonia

> >

> >-------Original Message-------

> >

> >Hi Tonia: I just got your message, yes there are some bad side effects of

> >Methadone when you first take it. I remember when I first started out, in

> >2000 I was put on a small dosage, but alot more than what you are

> >prescribed right now. I can't remember the exact dosage, but I will look

it

> >up and let you know at a later time. As for what I went through with the

> >drug. I was so sick, vomiting, stomach upset, dizzy ( very dizzy), it was

> >so bad I had to stop the drug. I told my doctor there was no way I could

> >take this drug, he said he would lower the dosage, and the side effects

> >would disappear shortly, once my system got used to it. Well he was

right,

> >it took a couple of weeks for the side effects to settle down. My doctor

> >told me this was the best medicine when it came to severe pain, because

you

> >don't get addicted to this. You don't get a high, like other drugs can

give

> >you. Like Morphine, and the others to many to count. But in any case, I

am

> >glad I stayed with the Methadone, because it has helped my pain

> >dramactically, I mean I swear my by it. I would not be able to walk

without

> >this drug, I take 4 tablets ( 40 mgs) daily. But I have been on this drug

> >going on 4 years now, I take Dilaudid for the break-thru. I don't care

for

> >that drug, he wants to try me on the Duragesic Patch. If that don't work

> >then the Morphine Pump. But like I have said before, I have no SPLEEN,

due

> >to a blood disease in the past. I can't fight infections, disease, and

> >sickness without alot of help from all kinds of meds and it takes me

months

> >to heal from surgeries. So really this surgery would be out also, I can't

> >take that change, of having the RSD spread. Also, I have a SEVERE BURNING

> >RED RASH, with alot of SWELLING. My doctor told me that I am carrying 15

> >pounds of water retention. I am taking 90 mgs, of a diarectic ( sp?). I

> >have been MISERABLE with the BURNING PAIN, and not even Methadone alone

can

> >take this pain away!!! But it does help take the edge off, and that is

> >better than nothing!! Also, I have the FIBROMYALGIA and that too has

gotten

> >alot WORSE!!!!! I have fallen down so much lately, because of the

strength

> >in my legs. Sorry for a novel, but it's nice to talk to others that no

what

> >I have been feeling. I have no friends around here that really understand

> >what I am going through. So I am glad I joined this group, you all have

> >been real good to me. Thanks!!! Janet

>

> _________________________________________________________________

> Get tax tips, tools and access to IRS forms - all in one place at MSN

Money!

> http://moneycentral.msn.com/tax/home.asp

>

>

>

>

>

[Guest guest]

Topamax is an anti-seizure med as is Neurontin. Zonegran is an anti-spasmodic and has different mechanism than either Topamax or Neurontin which are more helpful for the electrical "zings" and burning. None of these meds, at least as far as I am aware, does anything to reduce the swelling that accompanies RSD/CRPS. BarbaraJoAnn & Russ Ford wrote:

Exactly what does Topamax do for a person? I know I have read it before butcan't recall it now. Could you please tell me what it is given for? Thankyous MommaJoAnn