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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Everyone ~
It's been a little bit since I have posted. That is mainly because these last ten days have not been very good for me. My legs have been swollen almost everyday along with both of them being that lovely color of purple.

I recently had a my 49th birthday. My children and husband took me out to eat at a lovely Mexican restaurant. Along my greatest joy, my 11th month old grandson. I just love him more than life itself. He gets so exacted to see his grandma and grandpa that when we pick him up he just buries himself in our necks and then will start to grab our cheeks and giggle. Who wouldn't love a hello like that???!!!

Anyway, my pain level has been just through the roof. I have been trying to not let anyone know how bad I am hurting because first of all, they can't do anything about it anyway. And then I'm sure that they would just get sick of hearing someone complain everyday, they have their own problems I'm sure. So I have been sort of just "sucking it up". But it's gotten to the point where I just wanted to "vent"!

I can't remember who, but someone on this board suggested that I start a journal. And recently I have, which has helped.

I think one of the biggest reason I may feel so depressed about the whole thing is because of the weight gain. I just don't feel like myself anymore. I hate that my clothes no longer fit me and I can't believe the size that I now need to buy in order for anything to look half way decent on me.

I am going to see my doctor the first week in December and I am going to tell her that I really want to try the Topomax. I am now taking Lyrica, along with other medicines. I think having this weight gain has not helped my RSD. It can't help having this much more weight to carry me around. And since my RSD is in my legs and feet, this can't be good. Plus I think feeling so down about the weight is making everything worse.

I may be vain, but when I think that I look good, well then I feel better. I have always tried to take care of myself. Even on the days when I am not going anywhere I still do my hair and wear just alittle make up. Like I said, when I think I am looking good, I feel better. But with this weight gain it just doesn't matter what I do to myself, I still do not feel like I look good.

Now my husband tells me that I look good and that he loves me no matter what. But it is the "no matter what" that bothers me. There shouldn't be a "no matter what" because I knew that he must have meant the weight gain.

I'm sure that some of you may think that I am putting too much of how I feel on my looks, and that's OK. I understand what you must be thinking. But I also know myself and I need to do what is best for me and that is for me to loose some weight. I have tried everything to loose it. I no longer drink any soda. I no longer eat sweets. I have increased my intake of fruits and vegetables. Now I have done this for way over a month and NOTHING. No weight lost at all.

Does anyone else feel the way I do. Or am I all alone on this way of thinking? I just want to know how everyone else feels about their weight gain (if they have had any)? Does it bother you as much as it bothers me? And what are some of the things that you do about these feelings?

I know that I may be putting myself out there for some criticism about the importance I put on my weight. But I am just being honest with my feelings............

Take Care and Lots of Hugs,
Chris
Can your legs tolerate peddling a stationary bike? Or can you work out on a rowing machine? I prefer the bike because I can read or watch TV and it makes the time go by faster. I put the bike on the lowest setting and just "spin" at my own pace. Somedays I can do a lot and other days only 5 minutes or so. Exercise might help your mind and your body at the same time.

I am sincerely sorry that you are feeling bad about yourself and that the meds have made you gain weight. I tried Lyrica but couldn't tolerate it because my varicose veins felt like they were going to explode! It also turned me into a cranky witch! I recently started Neurontin, it's not as effective on the pain, but I am only taking 300 mg 3X a day.

Take care, Sandy
Chris,
Your writing was exactly how I feel sometimes! I'm going off the Topomax though and sticking with the Lyrica and Cymbalta. Taking all 3 made me have no memory at all -- I wasn't able to even finish my sentences and stuff, so it was pretty bad.
As far as the weight gain -- Yes, I absolutely HATE it just like you do and I could cry every time I have to give my clothes away. It makes me sad and I feel like a totally new person since I've been diagnosed with RSD. My life is sooooo very different now. It's in my legs and feet. My old life.....well, there's no sense even talking about it because it's not now. So, now I just do my best to hold onto my part time job at the school. Us part timers are a dying breed. Everyone is a full contract and I'm 1/2 contract and always have been for 9 years. There are days when I just truly want to quit but I can't afford it without selling our home to "move down".
I've tried the stationary bike several times and i'm only able to do it like for 3 minutes without my feet feeling like they're on fire and being electrocuted. Not fun.
Chris, have you thought about working on acceptance of your new body? That's where I am, and it's not easy and sometimes I'm able to do it, then other times I take a step or 2 backwards. But, I'm moving forward. I think what your husband meant was he'll love you whether you're sick, whether you're healthy,whether you are little, whether you are big -- He loves you very much. Mine is the same way. We've been married 27 years and we have 2 daughters. I turned 49 in July. My husband loves me very much and he's very stressed out. Worried that his job will be outsourced AGAIN. He's a software engineer and his last job went to the Romanians for 12.00 an hour - He's stressed that I won't be able to work and that we will have to sell this house and buy a smaller one in this horrible real estate market. Just all kinds of stuff going on, ya know? So anyways, I would try to learn to love yourself the way you are. I'm packing around lots and lots of weight. Just had a lipid panel done so I'll probably end up on Lipitor too but haven't heard from my GP so maybe that's a good thing. My next RSD doc appt is the 25th. I'm hurting pretty bad lately, especially at night. Sometimes it feels like my ankle is going to snap. Do you ever feel like that?
I feel badly for you cuz I could tell you're in a bad place right now so my hugs and thoughts are with you Chris. I am here for you and you can write anytime, ok? You take good care. Do you have a favorite thing -- Mine is to kick back in bed with some coffee and read the paper. Take time for yourself. It's always hard to do when we are mothers but try to take 15 minutes at least, for yourself everyday and say my weight is ok because I have to take this medicine and I have to be comfortable and without the worst pain. I'm going to be asking my doctor "what's next after the 650 daily of Lyrica and 120 of Cymbalta" -- What do we do next. The blocks have a very low rate of success so he's less than thrilled with doing those. I've said this many times so forgive if you've heard it before. My doc has researched RSD for like 35 years even though it only started having a name 20 years ago. He seems to really know his stuff - He attends the conferences and stuff too and is VERY opposed to the Ketamine because of the high chance of permanent psychosis. That was enough to keep me away. I read about this Dr. Swartman all the time but I'm grateful because I don't hurt bad enough to want sometime that extreme and I pray everyday for all of us who are hurting. This RSD is scary and nasty.
So, I'm going to go for now. You take good care of yourself and keep us posted on how you're doing, ok? Hope to hear from you soon.
Hugs,
Deb
Hi Chris,
I just wanted to say that we are all here for you. I asked this question on another forum and felt vain myself. I heard such horror stories about Lyrica and gaining weight and didn't want it to happen to me. We live in a very vain society so doesn"t it make sense for us to feel that way? Don't feel bad about it. Have you tried Aqua Therapy? I was told to do that and it really helps. Being able to move and strengthen without too much gravity? I luckily have not had the weight gain, but I don't know if that is my dose or length of time on it...
I guess I will see. Hang in there. It is hard to let go of who we were, but necessary for our mental health. I also found epidurals helped me a lot!!
*Hugs* Since it's the lyrica putting the weight on you, it doesn't matter what you eat or don't eat. You won't lose any weight at all. Sort of the catch-22 of meds. They put weight on you that you can't lose which in turn makes the pain worse and everything else as well, making you feel like crap about yourself. Talk about a viscious circle!!

I'm a writer so it was probably me that told you about doing the journal thing. :) I know how much it's helped me some days.

The option is trying Topomax which is the "weight loss" drug of our circle, going off lyrica or taking none of those kinds of meds at all. Nothing has helped me at all. Neurontin made me a monster, no exaggeration. Cymbalta gave me sharp,stabbing pain in my stomach and Lyrica,which I am on at the moment, has made the numbness in my legs about 10 x's worse than it was when I started taking it! I only began taking it to help the numbness too. It does nothing for my pain or burning at all. With the rsd crud there really is no way for us to win.

I don't think you're being vain or putting too much importance on your looks. It's just a fact of life that when we like the way we look we in turn feel good about ourselves. My problem isn't a weight gain but weight loss that hit me not long after I became inactive due to this crap. My body works backward from everyone elses'. As long as I can be on the go and active I gain weight, it's very slow, but I gain. When I can't do anything but lay around I lose it. Weight that is, because my mind deserted the sinking ship long ago. :D LOLOL I haven't felt good about myself in some time now because I'm seriously underweight and hate the way I look. I'm all bones and just ick!! I'm self-conscious because I imagine when people look at me they're thinking "look at how skinny she is! I bet she's anorexic, she needs help." My situation isn't any better for the old self-esteem than having the opposite problem. *sigh*

Since I've tried everything and can't gain, I can't get up and go, I've come to some sort of acceptance with my "new" self. Granted it's not complete but it's better than nothing seeing as how I can't do a dang thing about it.

Hugs,

Karen
Hi Chris,
I just started Lyrica and it doesn't seem to be helping for me (see my recent post). I will probably go back to Neurontin. This may sound strange, but one of the main reasons I switched was to be able to gain weight. I'm 5'8" and weigh only 112 lbs!!!! I've lost 25 lbs with this damned RSD!! My appetite is the same but I just can't seem to gain. If I gain 5 or 10 lbs., it never fails that within a month I lose it again.

Sorry if this upsets anyone who's gained weight. I suffered the weight gain when I went through menopause (early... I was only 45) and I couldn't stand myself. I remember giving away my clothing and going up a size every few months. It was torture!! There were days when I didn't want to go to work so I completely understand how you're feeling. Fortunately, it was the only symptom or problem I had with menopause. I was up to 165 lbs and I had such a hard time accepting it. I was lucky because it was temporary (1 yr.).
So, I've been at both ends of the spectrum and I know it's a lot harder to accept the weight gain than it is to accept the weight loss. Not that being stick-skinny is any picnic (can't find anything that fits) but, unfortunately, it's more acceptable because we're so conditioned by the media :mad:

Are you able to use small, light hand weights...1-2 lbs and/or ankle weights? I found that when I toned-up, I felt much better and even looked better. I wasn't able to work out at a gym (no time) but just doing a little at home, nights and weekends, really helped. It's probably difficult with the RSD but trust me, if you can do just a little, you'll feel so much better!

Hang in there:)
Vicki
I've been on Neurontin for only a few weeks and I'm already up 5 lbs. I tried Lyrica, but made too many enemies to count (the stuff made me NUTS!!). I had never heard of Topamax before reading info from this board, I plan to ask my doctor about it next time I see him. Is the RSD an off-label use for the Topamax? I am also on Cymbalta, which is off label, and still haven't gotten the WC people to reimburse me for it. It would stink having 2 scripts not being covered.

The Neurontin makes me want to eat ALL THE TIME.
Vicki ~ I understand about being too thin as well. Many years ago I too was too thin. But that was caused by some stress I had in my life at that time. My baby boy had just passed away, so it was a hard time in my life. Don't worry though, that was 25 years ago and I have accepted it and am doing fine. You never forget, but time really does help along with your faith in God's bigger plan.
I also went through menopause at a young age. I am now 49 and I had a hysterectomy about five years ago. Luckily I never felt any side effects from that. I didn't gain any weight. I actually felt so much better than before the surgery.
But this RSD is something totally different to have to deal with. The side effects from so many of the medicines that we need to take to help us can also be worse than anything. The problem is without the medicine we would never be able to function in life. So we are dammed if we do and dammed if you don't type of thing.
I too was taking neurontin before I started taking the Lyrica and I can't tell the difference between the two. They both made me gain weight. Perhaps the Lyrica a little bit more. They both made me want to eat more than usual but after a bit I really got a hold of that problem and started to eat better. Even though it seemed like the medicines was telling me to eat chocolate everyday! Ha! Ha!
I had been doing some yoga every night for about two months. My sister and a friend of ours would go over to my sister's house and do the yoga with a DVD that my sister had. At first it seem to really help me. But then the strangest thing started to happen. I was having so much more pain in the evening after a couple of hours after doing the yoga. At first I didn't put them together. But then I stopped doing the yoga for a week and the pain subsided quite a bit. Then I started the yoga again and the pain came back. Does anyone else experience more pain after doing some exercise? I don't know if it is just me or if the RSD has something to do with this. And it's really too bad because I found the yoga to be relaxing for my mind at least. Whatever poises I wasn't able to do I didn't do them or I would modify them to suit me better.
I do have some light weights though and I think I will try using them and see what will happen. I am always open to any suggestions that people have that has worked for them. Because you never know, it just may work for me as well.
Sandy, when you say that the Lyrica made you nuts and that you made too many enemies, what did you exactly mean by that? Luckily I have never experienced anything like that. That must have been terrible for you!
I too am taking cymbalta so if that is off-label, then perhaps my doctor will be fine with me trying topomax. She has never brought up that option for me so I hope she knows about topomax and how it is helping [B][U]some[/U][/B] people that have RSD.
I will also see if I can find a place that offers Aqua Therapy. This too is something that I will bring up with my doctor. The Aqua therapy does sound nice. I bet it is so much easier to move around when you are in the water. As long as the water is not cold!! Ha! Ha!
Thanks for all the advice and options for me to try. Because all I know is something has got to change for me. The pain can be so darn bad some days that I don't want to get out of bed. This RSD is not just a physical problem but along with the pain comes so many emotional issues that need to be addressed. I realize that if I don't address those emotional problems then the physical problems will just become worse. Was is that one saying, something like, "One body, One mind, One soul" and all need to work together.
Take Care and lots of hugs. I wish I could put into words how much you guys mean to me. Without your kindness, your help, your advice and your caring I know that I would feel so all alone. It's such a good feeling knowing that I can come here and there are people that "get me" and they "get it". Only other people that have RSD can really understand the issues we go through on a daily basis. And I'm glad we have each other to cry to now and then!
Thanks!
Chris
Happy Friday ---

My PT has taught me that using my affected limb causes pain afterwards, and that one of the things I am going to have to learn is how to find a "happy medium." He said that I have to "use it or lose it." The worst part is that for a while I couldn't judge how much pain I was going to be in after using my arm and I would be a basket case in the middle of the night or the next day after doing some light yard work, or running the vaccuum, or using my exercise bike. My upper trapezius muscle and the muscles that run underneath of it swell and cause excrutiating headaches. Anyway, I am still trying to figure out how to balance this all out. I LOVE my PT, (he is the fourth one for me in 2 years), I think I finally found someone who is really interested in helping me and has taken the time to research the disease.

As for meds, I think the Neurontin is finally helping me. Either that or the fact that it hasn't rained here in southern NE this week....hard to tell. When I said that the Lyrica made me crazy what I meant is that when I got mad I got REALLY mad - at co-workers, my kids, my poor hubby, etc...Plus it made the veins in my legs feel like they were going to explode.

I hope you all have a great day, I am glad I found this board.

Sandy





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