[Inspiretoday]

Another dr visit with not much to show. No one knows why I am still in so much pain, why I fall asleep all the time, why I can't get the boot off and why my working memory is suffering.

I walked away from my appointment yesterday with a referral for a Neurologist, A sleep Study, the advice to step down from Lyrica and a worthless script for Tramadol. The only thing worth paying the $40 copay for was, getting the script for my Ketamine and that I actually like some of the people in the office.

When voicing that I was afraid of the CRPS spreading a PA told me research doesn't show that CRPS spreads. I asked then why do I have it confirmed in both feet? It certainly has spread from one foot to the other. (she also told me last spring when I had pneumonia that CRPS doesn't affect our immune system).

So now that my vent of an incompetent provider is over, let me ask the real question: Is Lyrica easy to come off of? I had a horrible time with Cymbalta. I am not even sure why they are taking me off? I guess because I have gained a ridiculous amount of weight? and the possibility that it isn't helping.

**sigh** I am so done with this.

[Enna70]

You are right. CRPS does spread. Cymbalta was bad for me and lyrica same as gabatine (sp) no help.
Sadly we need the gp and burning bridges can hurt you more than them. Believe me, I understand and you are not WRONG. Some are just rude! But they hold the references that can lead you in the right direction. Please continue to be a squeeky wheel. Eventually you will be greased.
Vent your heart out here. We are in the same boat. Some more further along but still fighting.

[Hockey]

Lyrica is a big topic on this board. I can say, from personal experience, that it can be a difficult drug to stop taking. I hope you're one of the lucky ones and can quit Lyrica without too much bother.

You need to taper down, under medical supervision. Stopping cold turkey can be very dangerous - don't do that.

http://www.lyricamedication.info/wit...lsymptoms.html

Good luck and keep us posted.

[Littlepaw]

Don't you hate it when you know more than your provider? Duh, it can spread. Even the patterns have been studied at a tertiary referral center where they see everything. (I can post this article if anyone is interested) It was done by the TREND consortium who is behind a lot of research in Europe.

I am sorry you had such a frustrating visit and hope the new consult coming up goes better. CRPS has cognitive effects as does intense pain in general. When I was acute I was forgetting everything not what just went into working memory. Things like the combo for the lock to the backyard which has been the same for years. People's last names. It was terrible and very real. It did get better.

And ack! They need to figure out that thing with the boot! Let me at 'em. I say we straighten 'em out and get you some answers so you know if anything needs be addressed before Special K. So tiresome herding doctors!

I can't speak to the Lyrica but had to taper very slowly from neurontin which has a similiar mechanism. Take your time for sure.

[Diandra]

Hi,
I have gotten off Lyrica twice and it was very uncomfortable. I am still on a low dose because my seizures came back after being off it , if I recall correctly for only a month or so.

I suggest you go VERY slowly. I think docs only follow what the manufacture says about Lyrica withdrawal and some are not listening to their patients experiences. I tried my docs taper schedule and it was way too fast.

I suggest you use the SEARCH function here on the forum( on the toolbar at the top) and put in LYRICA WITHDRAWAL.
There are a couple long threads with the experiences of many folks here and my experiences as well.

Welcome and I wish you well,D.

[Inspiretoday]

Thanks All. I was only on 225mgs a day and sometimes
i forgot to take my morning dose, so I am hoping that I will be okay. I hare med withdrawal. I am so happy I am getting off the drug that caused me to gain over 30 pounds in 8 months. I literally could not get full…ever. It was horrible. As much as I asked to get off of it, I was told to make the choice, weight gain or pain?. What a horrible choice, and of course weight gain causes pain.

I have to say that I feel really GOOD today. Just the usual burning in my feet but my whole body doesn't hurt like it has for the past 3 months. I had a rum and coke last night before bed (Was craving rum & my island life so I had a little treat). I wonder if that helped? Seems ridiculous and I am being funny. Although, living in the caribbean for the past years maybe my body is just normal with the rum

Littlepaw… I TOOK THE BOOT OFF! I said to hell with everything that everyone was saying and thought I would try things a different way. I had a student come through my office a few weeks ago in a boot and on crutches. Sadly she told me she had CRPS. The first person I had ever met face to face. (For her too) After a long understanding hug we spoke about treatment and getting out of our boots. Because of her age (18) she was going to an inpatient treatment center for 6 weeks (can't remember where). I wrote a quick email to her last week to check in and she said they took away her boot and crutches the first day. She is now walking (trying not to limp) and jogging. That was 4 weeks ago. Now I know it has been a while since I was 18 but I figured my 34 year old body could do it, so I pushed it. I haven't' worn the boot since Friday. I just put on my shoes and go. I need the stability of my crutches or I may fall but I am doing surprisingly well. I refuse to put that boot back on because it seems at this point everything may be healed? I am putting a ? because I was never approved for the MRI so who knows. I'm just going to listen to my body.

Well I'm heading out to do another pinterest project. Today I am making a sofa table to put behind the corner sofa. I needed somewhere to rest my tropical plants and that occasional rum & coke Hope everyone has a relaxing Labor Day!

[RSD ME]

alot of drs don't understand rsd still especially the spreading part of it and how to medicate properly. though i am not a dr i was lucky enough to find a good pm dr who knows how to help manage rsd pain and i am living proof of it. there is plenty of documentation on how rsd can spread and how real it is. rsd also has a tremendous effect on the immune system and i believe it is listed as an auto-immune disorder but i need to find out where i read that. though i already know it is because i get sick all the time since i've had rsd. you may even hear some drs say rsd is psychological. also not true. rsd has physical as well as emotional symptoms. a neurologist may only help to diagnose rsd and maybe try prednisone for a short while to try to bring down swelling and ease pain. they will then most likely refer you to a pain management dr who can prescribe long term meds and/or other options like nerveblocks, etc to help manage your rsd pain and try to keep it from spreading and bring it into remission. i've never been on lyrica but have tried cymbalta and that didn't help me. if lyrica isn't helping your burning pain then maybe ask your pm dr to try gabapentin. lyrica is used for fibromylagia patients which makes me think your dr is comparing rsd to fibromyalgia. that is also a misconception. rsd has physical symptoms that can be seen to the naked eye where fibro pain can not. my pm dr prescribes gabapentin and a strong pain killer to help manage my rsd pain. i also have fibro and use the gaba to help manage that pain too. it can't hurt to see a neurologist to get a second opinion and then also get a good pm dr who knows what rsd is and how to treat it properly. rsd is a chronic disease so you need a dr who can treat your pain long term. there is alot of info on this forum about rsd and online. just keep searching for the right dr and you will find one it just takes some time. don't give up hope. i know it's hard to be in pain and have to try to find a dr who understands how to properly treat rsd but you can do it. just don't give up. and know that you have alot of great support here on this forum. hope you start to feel better soon. take care.

[Inspiretoday]

Originally Posted by RSD ME

alot of drs don't understand rsd still especially the spreading part of it and how to medicate properly. though i am not a dr i was lucky enough to find a good pm dr who knows how to help manage rsd pain and i am living proof of it. there is plenty of documentation on how rsd can spread and how real it is. rsd also has a tremendous effect on the immune system and i believe it is listed as an auto-immune disorder but i need to find out where i read that. though i already know it is because i get sick all the time since i've had rsd. you may even hear some drs say rsd is psychological. also not true. rsd has physical as well as emotional symptoms. a neurologist may only help to diagnose rsd and maybe try prednisone for a short while to try to bring down swelling and ease pain. they will then most likely refer you to a pain management dr who can prescribe long term meds and/or other options like nerveblocks, etc to help manage your rsd pain and try to keep it from spreading and bring it into remission. i've never been on lyrica but have tried cymbalta and that didn't help me. if lyrica isn't helping your burning pain then maybe ask your pm dr to try gabapentin. lyrica is used for fibromylagia patients which makes me think your dr is comparing rsd to fibromyalgia. that is also a misconception. rsd has physical symptoms that can be seen to the naked eye where fibro pain can not. my pm dr prescribes gabapentin and a strong pain killer to help manage my rsd pain. i also have fibro and use the gaba to help manage that pain too. it can't hurt to see a neurologist to get a second opinion and then also get a good pm dr who knows what rsd is and how to treat it properly. rsd is a chronic disease so you need a dr who can treat your pain long term. there is alot of info on this forum about rsd and online. just keep searching for the right dr and you will find one it just takes some time. don't give up hope. i know it's hard to be in pain and have to try to find a dr who understands how to properly treat rsd but you can do it. just don't give up. and know that you have alot of great support here on this forum. hope you start to feel better soon. take care.

Thanks RSD ME. I completely agree. Sometimes I bruise my tongue from biting it in the doctor's office. I have been to numerous Dr's. I've had the nerve conduction tests by neurologist. I have been on Gabapentin and it stole my personality so much that I didn't recognize myself. I was a zombie. and still in pain. The dr.'s say "you are only 34, we aren't putting you on opioids" I understand that, I don't want to have a dependence either but I also shouldn't have to live in this amount of pain. I'm also very self aware so I think I would be low risk for abuse of any sort. One of the drs even said that Opioids were not good for CRPS patients. Have you heard this?

I have another consult @ one of the East Coast's top medical centers. Lets hope they have something better to say. I am being referred there for the Ketamine infusions. If not, I will head up to DC, I have read some good reports on here about some of the doctors.

Its taken me some time to come to terms with being sick but now I'm just ready to move forward. Every day that I am not getting help, I feel that I am just wasting away… That's why I decided to take my foot out of the boot and see what happens. So far so good. At least I don't feel like a "sick person"today.

[Littlepaw]

Hi Inspire,

I am so glad you've got that boot off!!! That is fantastic. I am so glad it feels like it has healed up in there. That may well be the case. Not using the limb properly can contribute to a lot of aches and pains by itself.

Okay, so the Mom in me has got to say don't going doing anything stupid. I have a teenager, I have to say it. Sorry. Seriously though, keeping the crutches is fine for right now. You don't want to re-injure anything and those ligaments are going to be stiff, sore and prone to strain until they strengthen and limber up. This will take a while and that's expected. Try walking in the pool first before going full on to heel to toe gait on land. You can also reduce to one crutch when you are ready. When I first started weight bearing again I would press on a bathroom scale with my injured foot, slowly adding weight up till I could handle my body weight. This is the time for my motto "start low, go slow".

This is great progress. Don't get discouraged if you have setbacks. They will happen as you try new things. Just keep adding a little bit more here and there, more weight, more motion, more time. Those muscles will start coming back!

Congrats!

[RSD ME]

inspire, my dr has had me on strong pain killers along with neurontin (gabapentin) for almost five years now. though i've had to to increase them after having three surgeries, i was able to decrease when the surgical wounds healed. so i know i am not addicted to them. my pm dr said that addiction is NOT what we have when taking narcos. he said that addiction is when you take drugs to get "high". He also said that what people with rsd have is called tolerance because we are taking prescribed meds to manage a real chronic pain condition like rsd. he also that its better NOT to be in pain then to be in pain because that only makes rsd worse and possibly spread. i believe what he says because i've had other drs tell me the same thing like the pyschiatrist i see to help manage my depression and anxiety that rsd causes me. he prescribes zoloft for depression and a tranquilizer to help me sleep (i.e. xanax). he also agrees that it is ok to take because it is helping me get the sleep i need so that my rsd pain doesn't flare up as much. i don't like taking meds and never have except for some advil from time to time prior to having rsd, but without the meds now with rsd i would not be able to tolerate the pain. it would be too unbearable. i know gabapentin is tough to take at first but after a few weeks the zombie like symptoms wear off (at least they did for me). the down side is i can't drive anymore but the up side is my pain is being managed. i am not a dr but it sounds to me like any dr who says you are too young to take prescribed pain meds when you are suffering from one the most painful chronic illnesses known to man makes no sense to me. i don't think that that dr knows enough about rsd to help you manage your pain. age has nothing to do with taking meds. your illness requires something to help manage your pain whether it be meds or nerveblocks or ketamine, calmare or scs (that one is my last resort). everyone who has rsd reacts diffently to treatments so you have to first find a good pm dr to help mange your rsd pain and secondly find which treatment suits you best. it is ultimately up to you since it is your body. you have to follow your gut and do what you are comfortable with. don't let anyone push you into something you don't want to do. research rsd and its treatments and drs as much as possible. and like. and most importantly don't ever give up. you will find the right dr and he will help you manage your pain. i found one who is awesome so there is hope out there. sending healing thoughts your way my friend. take care.
p.s. i have heard of the nerve conduction test too and have been told by some drs that you don't need it to diagnose rsd. the physical symptoms of rsd are a very clear sign that one has rsd because they can be seen by the naked eye, i.e swelling, shiny skin, excessive hair and nail growth on affected area, temperature changes and color changes to skin and lack of range of motion in affected area. the extreme pain that is out of proportion to the original injury is also a good indicator that one had rsd. just wanted to let you know in case someone wants to have you do that painful test again. i would get a second opinion first so you don't have to suffer anymore then you already are unecessarily. hoping you feel better soon. soft hugs.