RSD and Weight Loss or Gain

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> Recommend Delete Message 16 of 20 in Discussion From:
><NOBR>byrd45</NOBR> Sent: 6/16/2005 10:22 AM Hi Kevin, That is alot of
>weight in a short period of time! I would talk to your doctor and ask him
>to check your thyroid just to make sure it is okay. I asked mine and he did
>blood work and thankfully mine is okay!Anyway just a suggestion from one
>patient to the other.Also some meds can have that effect as well. I agree
>with Karen though talk to you doctor.Let us know how it turns out for you
>and good luck. Love,
> Robyn
>
> Reply
> Recommend Delete Message 17 of 20 in Discussion From:
><NOBR>byrd45</NOBR> Sent: 6/16/2005 10:30 AM Hi trc44, There are other
>meds that you can take in its place and hopefully they would help you the
>same way! Ask your doctor and see what they say. I can't think of the
>names,but at my last appointment my doctor did mention we could try another
>drug in place of Neurontin if I can't stop gaining weight from it.I think
>she said there were three or four other possibilities.I have gained alot
>too ,but have recently been able to lose some of the forty pounds I have
>gained. Eleven pounds so far,but it has been a slow,tough battle. It is
>terrible and the weight just compounds things and makes us feel worse.I
>hate it too and hope you find another drug that won't do that to you.
> Love,
> Robyn
> Reply
> Recommend Delete Message 18 of 20 in Discussion From:
>ck2kreger Sent: 6/16/2005 12:18 PM Karen, I had a sympathectomy last
>week and I am having another at the end of this month. They can't explain
>the weight loss. All they say is that it may be because of my loss of
>appetite due to the pain I am in.
> Reply
> Recommend Delete Message 19 of 20 in Discussion From:
>GalenaFaolan Sent: 6/16/2005 2:04 PM Pain can cause you to lose weight.
>Have they done any blood work to check your thyrhoid though? I've seen a
>lot of people with RSD end up with thyrhoid problems. You shouldn't lose
>that much in that short of time. Sympathectomy?? Oh my, why are you
>having another done if you just had one done?? I would never let any
>doctor do that to me because it doesn't help anything. That's just my
>opinion!! Please let us know if you find out anything. Love and Hugs,
> Karen J
> Reply
> Recommend Delete Message 20 of 20 in Discussion From:
>ck2kreger Sent: 6/17/2005 5:55 AM All of the doctors have run all of
>the tests I could think of. The sympathectomy was a last resort. I was/am
>in so much pain and not a single nerve block has helped. My RSD started in
>my left leg so the surgery took place on the left side. Amazingly , it went
>very well and I have almost 100% feeling back in that leg and no burning or
>major pain. The doctor said my Sympathetic Nerve was extremely swollen.
>Unfortunately, the RSD had spread to my right leg , hips, and back. Now he
>is going in to do the same thing on the right side Sympathetic Nerve to
>hopefully clear it all up. I finally have some hope and best of all, I am
>losing the urge to end my life. Thank you all for your support. Have a
>great pain free day. Kevin
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Recommend Delete Message 5 of 7 in Discussion

From: byrd45 Sent: 8/19/2005 6:37 AM
Hi Trudy,
I am really glad you like the new board and those were my thoughts exactly that in case anyone had missed the discussions past they could come here and comment on them or read them for information. That is great news about Zonegran. What a nice side effect. Do you feel it works just as well as Neurontin? I am being weaned off Neurontin for the same problem big weight gain! I have gained 50 pounds since I started taking Neurontin a few years ago. Since being cut back I have lost 20 pounds! Tell your husband not to feel bad that when he gets off of it I bet the weight will come off without to much effort. Congratulations on losing 30 pounds that is really great! Good hearing from you and take care!
Love,
Robyn


Reply
Recommend Delete Message 6 of 7 in Discussion

From: Annie Sent: 8/1/2006 5:32 PM
I too am on Neurontin and have been for almost exactly a year now. Like so many others of you, I'm a lot less active than I was before this nightmare uprooted my life. But I still make it a point to do as much as I can when I can, desipte it being on both sides now. However, the weight gain is too much to be justified simply by being less active. For this past year, my neurontin doesages have been steadily increased. I'm now taking 3,600 mg per day. I have seriously gained approximately 60-70 lbs. in a year's time! Granted I'm not working outside the home now, but I do clean the house as much as I possibly can. Ok that was a bit of a lie, I always push myself too far and pay for it dearly. But it evens out in the long run. I don't leave the house unless I have a dr's appointment most of the time, but I rarely sit still. I mainly eat one meal a day and I'm trying to get better about that and eat atleast twice a day. But I don't snack hardly ever. I drink coffee, rarely soda or anything else with sugar. I don't get it!
I asked my dr and told her that I've read on here that there are people who either gain a lot of weight or lose a lot, on neurontin, so could it be that. She said there's not enough of a side affect to cause massive weight gain, it's because I'm inactive. I can't get it through her head that I'm not inactive. So, I asked for some exercise ideas and she told me to exercise my arms! Made her mad, but I laughed at that before I could stop myself. She won't take me off any of the meds I'm on. W/C wants me at MMI and I won't accept any surgery so she says all she can do is increase what I'm currently taking and once that doesn't "cure" me, I'm at MMI. I'm maxed out on everything I'm taking so, she guesses it won't be long now. However, my attorney says that's BS, W/C hasn't done anything for me and I won't be at MMI til a specialist (and most likely 2 or 3) say I'm at MMI. LOL... Which my attorney has been fighting for 7 months for them to send me to a specialist. I've had this for a year and haven't seen one yet, other than for my battery test to confirm to W/C that I do in fact have RSD.
LOL (still laughing at my situation) have to, it's either that or cry.
Anyway, here's what I'm on... maybe someone has an idea. 3,600mg of Neurontin, 600mg of Lyrica, 120mg of Cymbalta and 50mg of Amitriptylin per day.
Also, she just told me the other day that my oxygen saturation level has been consistently dropping every visit for the past 6 months or so. I spent 2 days last week having a sonogram and an ultrasound done in search of blood clots in my left leg. The results were negative for bloood clots.
~Please Help~
Annie



Reply
Recommend Delete Message 7 of 7 in Discussion

From: byrd45 Sent: 8/8/2006 12:11 PM
Hi Annie,
She is so wrong! I gained 50 pounds on that drug and now since being off it for about 9 months have lost 45 of it. The Neurontin was out and now I take topomax which helps me more and doesn't do that to me. I also heard that Lyrica can cause weight gain as well. At least Keith from RSDHope claims it did for him and others. Cymbalta I was on but it didn't help me so it was stopped.Amiltriptylin can also cause weight gain but I still take it and am okay since stopping the Neurontin. The lawyer is right that you need a specialist who understands what you have. You have to be weaned off the neurontin so for now just hang in there. Maybe you can ask her to be weaned off so you can try topomax and see what she says. Can't hurt it's worth a try. At least you won't have the weight gain. Just a thought it is entirely up to you of course.Coming off the Neurontin is a little rough but worth it. Best of luck.
Love,
Robyn

Reply
Recommend Delete Message 1 of 7 in Discussion

From: byrd45 (Original Message) Sent: 8/18/2005 8:44 AM
Reply
Recommend Delete Message 1 of 20 in Discussion

From: <NOBR>byrd45</NOBR> (Original Message) Sent: 6/7/2005 8:51 AM
Hi Everybody,
I thought this week it would be interesting to discuss weight problems and RSD. Either weight loss or weight gain.Has anyone else had a noticeable weight change whether it be weight loss or weight gain? I sure have! I have a noticable weight gain that started about a year and a half after I developed RSD. It is understandable that I would gain some weight from a lower activity level and really that is all that I thought was going on.I was very active before RSD came into my life. I have unsuccessfully tried losing it for the past two years. Now I wonder if there may be more to this picture. I had my thyroid checked and that turned out fine.Alot of the medicines we take that are helping us can also affect weight gain or loss. Plus I was retaining alot of water due to the swelling in my abdomen. The water pill I take is helping that and boy am I glad! For the past month I seriously have tried again to lose and now it is coming off slow but hey I will be glad if it keeps going down. I have lost 11 pounds and am hopeful to lose the rest.I started thinking after something I read on Dr. Hooshmand's site. He has lot's of great information and he had something about weight gain and weight loss and RSD.Read what he had to say here: http://www.rsdrx.com/rsdpuz4.0/puz_36.htm Anyhow he has developed an eating plan (not a diet) that helps with our fluctuations with weight called the Four F plan. I have printed it out and will be following it the best I can. I will let you know how it goes for me and if you want to check it out for yourself go here: http://www.rsdrx.com/four_f's_diet.htm I am struggling with the weight but not willing to give up until it is gone. Extra weight isn't good for us it makes it harder to move and raises pain levels. This eating plan is for people who have chronically lost weight too.It is supposed to level out your weight. Has anyone else tried this plan or heard any positive things about it? I would love to hear any comments or experiences you have with RSD and weight gain or weight loss. Just add your comments or experiences to this post!
Love,
Robyn





First Previous 2-7 of 7 Next Last Delete Replies

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Recommend Delete Message 2 of 7 in Discussion

From: byrd45 Sent: 8/18/2005 8:45 AM
Recommend Delete Message 6 of 20 in Discussion

From: <NOBR>glendapullum</NOBR> Sent: 6/8/2005 9:59 AM
Well Karen J or anyone else thats had a weight loss I had just the oposite so I'll be glad to give you the extra that I have LOL. I was never over 110 till my doc put me on neurontin then I skyrocketed I am now at 147 and can't seem to get rid of the excess. I do warm water therapy twice a week , do my yard work ,chase a 2yr old and a 4 yr old around all day and ride my bike in the eves when pain levels aren't to bad .Plus I don't really eat allot. I'm not really fat its all solid and firm and nothing I do seems to help take the weight off . I'm open to any suggestions . Oh BTW I'm off the neurontin .
hugs
glenda


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Recommend Delete Message 7 of 20 in Discussion

From: <NOBR>fireislandlady</NOBR> Sent: 6/8/2005 11:07 AM
weight gain, very very bad!!!!
Since I am not as active as before, used to power walk 10 miles every day, & on neurontin & went thru the change & older (not wiser) & the partys in my community every weekend, what is one to do. I gain 25 lbs since this rsd has begun. I'm only 4'11" and was petite, 25 lbs is alot for a small person. I try to diet and also eat less, but nothing works. This stinks!!!!
Terry


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Recommend Delete Message 8 of 20 in Discussion

From: GalenaFaolan Sent: 6/8/2005 4:17 PM
Yep, mail all extra weight this way!!!!!! I just can't do that diet thing though. I've had no problems with anything I eat at all. It doesn't affect my pain or give me any weird symptoms and I could never, ever give up chocolate for any reason!!! LOL I do know that some people do have problems with certain foods since they got RSD that they didn't before. Glad to hear Robyn that you're not getting pain in your abdomen anymore. I hope the weight loss keeps going good!!!

Love and Hugs,
Karen J


Reply
Recommend Delete Message 9 of 20 in Discussion

From: <NOBR>byrd45</NOBR> Sent: 6/10/2005 3:22 PM
Hi Terry,
I know it is hard don't despair all you can do is try right?! I hate that I have gained weight too. Don't give up you keep trying okay!
Love,
Robyn


Reply
Recommend Delete Message 10 of 20 in Discussion

From: <NOBR>byrd45</NOBR> Sent: 6/10/2005 3:25 PM
Hi Karen,
I got the package ready unfortunately forty pounds is a lot of stamps so is COD okay? Let me know because I am sending my extra weight to you!You can keep it just please don't send it back
Love,
Robyn





Reply
Recommend Delete Message 3 of 7 in Discussion

From: byrd45 Sent: 8/18/2005 8:46 AM
Recommend Delete Message 11 of 20 in Discussion

From: GalenaFaolan Sent: 6/10/2005 3:33 PM
LOL No problem!!! I promise I won't send it back!!!

Love and Hugs,
Karen J


Reply
Recommend Delete Message 12 of 20 in Discussion

From: ck2kreger Sent: 6/14/2005 6:05 PM
Good afternoon all -

Recently, over the past 3 weeks or so I have started to really lose weight. almost 30 pounds now. I can't keep it on.

Kevin


Reply
Recommend Delete Message 13 of 20 in Discussion

From: <NOBR>trc44</NOBR> Sent: 6/16/2005 7:10 AM
I I have gained 20 lbs since this has all started. My clothes don't fit anymore and I look like I'm 6 mos. pregnant. I feel very uncomfortable. I hate it!!!!!!!!!!


Reply
Recommend Delete Message 14 of 20 in Discussion

From: <NOBR>trc44</NOBR> Sent: 6/16/2005 7:14 AM
How did you get off the neurotin? Is there another med to take in its place? I am on it and am really gaining weight


Reply
Recommend Delete Message 15 of 20 in Discussion

From: GalenaFaolan Sent: 6/16/2005 9:13 AM
Kevin,
That's a big weight loss over such a short period of time. My suggestion would be to get a full physical if you haven't done so recently. Blood work, everything. There may be something causing it that you don't know about.

Love and Hugs,
Karen J


Reply
Recommend Delete Message 16 of 20 in Discussion

From: <NOBR>byrd45</NOBR> Sent: 6/16/2005 10:22 AM
Hi Kevin,
That is alot of weight in a short period of time! I would talk to your doctor and ask him to check your thyroid just to make sure it is okay. I asked mine and he did blood work and thankfully mine is okay!Anyway just a suggestion from one patient to the other.Also some meds can have that effect as well. I agree with Karen though talk to you doctor.Let us know how it turns out for you and good luck.
Love,
Robyn



Reply
Recommend Delete Message 17 of 20 in Discussion

From: <NOBR>byrd45</NOBR> Sent: 6/16/2005 10:30 AM
Hi trc44,
There are other meds that you can take in its place and hopefully they would help you the same way! Ask your doctor and see what they say. I can't think of the names,but at my last appointment my doctor did mention we could try another drug in place of Neurontin if I can't stop gaining weight from it.I think she said there were three or four other possibilities.I have gained alot too ,but have recently been able to lose some of the forty pounds I have gained. Eleven pounds so far,but it has been a slow,tough battle. It is terrible and the weight just compounds things and makes us feel worse.I hate it too and hope you find another drug that won't do that to you.
Love,
Robyn


Reply
Recommend Delete Message 18 of 20 in Discussion

From: ck2kreger Sent: 6/16/2005 12:18 PM
Karen,

I had a sympathectomy last week and I am having another at the end of this month. They can't explain the weight loss. All they say is that it may be because of my loss of appetite due to the pain I am in.


Reply
Recommend Delete Message 19 of 20 in Discussion

From: GalenaFaolan Sent: 6/16/2005 2:04 PM
Pain can cause you to lose weight. Have they done any blood work to check your thyrhoid though? I've seen a lot of people with RSD end up with thyrhoid problems. You shouldn't lose that much in that short of time.
Sympathectomy?? Oh my, why are you having another done if you just had one done?? I would never let any doctor do that to me because it doesn't help anything. That's just my opinion!!
Please let us know if you find out anything.

Love and Hugs,
Karen J


Reply
Recommend Delete Message 20 of 20 in Discussion

From: ck2kreger Sent: 6/17/2005 5:55 AM
All of the doctors have run all of the tests I could think of. The sympathectomy was a last resort. I was/am in so much pain and not a single nerve block has helped. My RSD started in my left leg so the surgery took place on the left side. Amazingly , it went very well and I have almost 100% feeling back in that leg and no burning or major pain. The doctor said my Sympathetic Nerve was extremely swollen. Unfortunately, the RSD had spread to my right leg , hips, and back. Now he is going in to do the same thing on the right side Sympathetic Nerve to hopefully clear it all up. I finally have some hope and best of all, I am losing the urge to end my life.

Thank you all for your support.

Have a great pain free day.

Kevin




Reply
Recommend Delete Message 4 of 7 in Discussion

From: theMatrix777 Sent: 8/18/2005 9:29 PM
I know these are older messages but for me being so new they are a great way
to catch up.

Instead of Neurotin, my pain dr gave me Zonegran the first time I saw him.
When I researched it, it is in the same category, does basically the same
thing, but one of the BEST side effects, if you want to call it a side
effect, is that I have lost over 30 lbs since I started talking it.

My husband takes Neurotin for diabetic related neuropathy and has gained
40+lbs and is not a happy camper.

So, I'm very happy with my Zonegran and haven't noticed any side effects at
all, at least for me. And, I sure needed the weight loss. lol Of course,
it may not be for everyone. My pharmacy said it was relatively new to the
market. Now, my husband wants to try it and he's going to talk to his doctor
about it.

Thanks for all the great info. It's been a goldmine of information for me
today.

Trudy


>From: "byrd45" <EARLIBYRD@msn.com>
>Reply-To: "RSD Outreach" <RSDOutreach@groups.msn.com>
>To: "RSD Outreach" <RSDOutreach@groups.msn.com>
>Subject: Re: RSD and Weight Loss or Gain
>Date: Thu, 18 Aug 2005 05:46:45 -0700
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> Recommend Delete Message 11 of 20 in
>Discussion From: GalenaFaolan Sent: 6/10/2005 3:33 PM LOL No
>problem!!! I promise I won't send it back!!! Love and Hugs, Karen J
> Reply
> Recommend Delete Message 12 of 20 in Discussion From:
>ck2kreger Sent: 6/14/2005 6:05 PM Good afternoon all - Recently,
>over the past 3 weeks or so I have started to really lose weight. almost 30
>pounds now. I can't keep it on. Kevin
> Reply
> Recommend Delete Message 13 of 20 in Discussion From:
><NOBR>trc44</NOBR> Sent: 6/16/2005 7:10 AM I I have gained 20 lbs since
>this has all started. My clothes don't fit anymore and I look like I'm 6
>mos. pregnant. I feel very uncomfortable. I hate it!!!!!!!!!!
> Reply
> Recommend Delete Message 14 of 20 in Discussion From:
><NOBR>trc44</NOBR> Sent: 6/16/2005 7:14 AM How did you get off the
>neurotin? Is there another med to take in its place? I am on it and am
>really gaining weight
> Reply
> Recommend Delete Message 15 of 20 in Discussion From:
>GalenaFaolan Sent: 6/16/2005 9:13 AM Kevin, That's a big weight loss
>over such a short period of time. My suggestion would be to get a full
>physical if you haven't done so recently. Blood work, everything. There may
>be something causing it that you don't know about. Love and Hugs, Karen
>J
>