[Angelina55]

So I have been trying to manage my pain with pain killers, vitamins, lyrica, and herbal remedies. I am just in to much pain! Here are my symptoms:
Painful pins and needles from toes up to hip joint
a pressure type feeling, kinda heavyish
sharp stabbing pains
spasms
a constant stabbing pain throughout leg and ankle
a sharp stinging feeling throught leg and ankle
cannot put any weight on it
burning constantly but sometimes feeling of so cold feels like it has frostbite
a constant achy intense dull deep pain

I am just having trouble researching different drugs that I should try. I am trying to fing a neurologist, but I just can't wait. I am a single mom and my daughter depends on me. I need to get this pain under somekind of control. So any help or advice on ANYTHING would be great!!! Any vitamins, herbal remedies, diet, drugs, other "tricks", anything.....
I am taking vitamin C, D, a B-complex, and Fish Oil.
Thank you,
Angelina
May we all be strong.... We may not always win the battle but we will win the war!!!!

[loretta]

Originally Posted by Angelina55

So I have been trying to manage my pain with pain killers, vitamins, lyrica, and herbal remedies. I am just in to much pain! Here are my symptoms:
Painful pins and needles from toes up to hip joint
a pressure type feeling, kinda heavyish
sharp stabbing pains
spasms
a constant stabbing pain throughout leg and ankle
a sharp stinging feeling throught leg and ankle
cannot put any weight on it
burning constantly but sometimes feeling of so cold feels like it has frostbite
a constant achy intense dull deep pain

I am just having trouble researching different drugs that I should try. I am trying to fing a neurologist, but I just can't wait. I am a single mom and my daughter depends on me. I need to get this pain under somekind of control. So any help or advice on ANYTHING would be great!!! Any vitamins, herbal remedies, diet, drugs, other "tricks", anything.....
I am taking vitamin C, D, a B-complex, and Fish Oil.
Thank you,
Angelina
May we all be strong.... We may not always win the battle but we will win the war!!!!

Hi Angelina, I've been thinking of you. Still can't get into my email to PM you. I need to contact my provider to reset the firewall.
Anyway, I'm so sorry you are having such a difficult time. So much coming at you at once.
Besides pain meds and anticonvulsants like lyrica or neurotin-many rsd drs use anti-depressants for nerve pain. Also benzodiazapines (high addictive) for dystonia. I'm sorry-do you have a dr. like neurologist or pain specialist who is familiar with crps overseeing your care? All of your symptoms are too familiar-I know it's tough. You are in way too much pain, sounds like you need some added meds to get it under control. I remember you saying you are in a '9' much of the time, and that's not OK. Are you sleeping?
There is a post on january 31 2013 about Dr. Swartzman and crps. It is really good-discusses various meds used for nerve pain. Dr. Swartzman is renouned crps dr. that now practices in Philadelphia. He was among 5 drs that did a trial ketamine study here at the Mayo clinic in Phoenix. long time ago. A friend of mine was an assistant.
Hope this helps. Take care, loretta

[catra121]

I am so very sorry to hear what you are going through. Is there anything else that you have found that helps you besides meds?

For me...when I was at my worst and unable to walk or stand...the best relief that I got was from heat. I took hot baths with Epsom salts (twice a day for a long time). I have a space heater that I would put near me when I sat on the couch. I have heating pads and patches that I use to help. I also use an ultrasound heat therapy machine after my hot baths which seems to extend the amount of relief that I get from the baths.

Lidoderm patches have also been helpful for me...particularly when I use them just for pain flares. I also have a lidocaine cream that I have started using for my hands when they flare and that has been helpful as well.

None of these things help a LOT but they do take the edge off.

It's also important to figure out what your triggers are and do your best to avoid them as much as possible. For me...cold and air movements and touch are the worst things...cold being the number one big bad for me and my RSD. So I wear gloves and a scarf...I keep covered...I keep it warm in my house and avoid air conditioning during the summer. Full weight bearing also causes my pain levels to increase quickly so I use a walker now and it takes all day for me to get as bad as I do in 30 minutes without the walker.

And...I know this isn't a quick fix...but physical therapy was really the best thing for me. It hurt like hell to go through it and it took a good 6 months of daily therapy and exercises to get me back on my feet and another 6 months before I was really fully functioning...but it helped me so much. You cannot discount how much worse the pain gets with immobilization and disuse.

I hope that you are able to find some meds to help make this more bearable for you.

[Angelina55]

Originally Posted by loretta

Hi Angelina, I've been thinking of you. Still can't get into my email to PM you. I need to contact my provider to reset the firewall.
Anyway, I'm so sorry you are having such a difficult time. So much coming at you at once.
Besides pain meds and anticonvulsants like lyrica or neurotin-many rsd drs use anti-depressants for nerve pain. Also benzodiazapines (high addictive) for dystonia. I'm sorry-do you have a dr. like neurologist or pain specialist who is familiar with crps overseeing your care? All of your symptoms are too familiar-I know it's tough. You are in way too much pain, sounds like you need some added meds to get it under control. I remember you saying you are in a '9' much of the time, and that's not OK. Are you sleeping?
There is a post on january 31 2013 about Dr. Swartzman and crps. It is really good-discusses various meds used for nerve pain. Dr. Swartzman is renouned crps dr. that now practices in Philadelphia. He was among 5 drs that did a trial ketamine study here at the Mayo clinic in Phoenix. long time ago. A friend of mine was an assistant.
Hope this helps. Take care, loretta

Me? Sleep? What is that? Lol no I don't get much sleep, maybe four hours all together and not at the same time. I saw my family doc today and he put me on gabapentin (sp?) and I am seeing a neurologist for my migraines and I will be seeing her on the 28th so I will talk to her about it. And yes most of the time if I am lucky my pain is a 9. 85% of the time it is a 10. It is so unbearable that I don't know what to do, I feel like my body is going to shut down on me. My blood pressure is dropping. It was low today. And I can feel it when I am home. My dad has a machine and I think I am going to start keeping track of it. Ever since it spread through my leg, I just never get relief unless I am laying in bed and then it only goes down to an 8 for a couple hours while on my pain killers. I will talk to my doctor about those meds. Thank you!!!
Angelina

[Angelina55]

Originally Posted by catra121

I am so very sorry to hear what you are going through. Is there anything else that you have found that helps you besides meds?

For me...when I was at my worst and unable to walk or stand...the best relief that I got was from heat. I took hot baths with Epsom salts (twice a day for a long time). I have a space heater that I would put near me when I sat on the couch. I have heating pads and patches that I use to help. I also use an ultrasound heat therapy machine after my hot baths which seems to extend the amount of relief that I get from the baths.

Lidoderm patches have also been helpful for me...particularly when I use them just for pain flares. I also have a lidocaine cream that I have started using for my hands when they flare and that has been helpful as well.

None of these things help a LOT but they do take the edge off.

It's also important to figure out what your triggers are and do your best to avoid them as much as possible. For me...cold and air movements and touch are the worst things...cold being the number one big bad for me and my RSD. So I wear gloves and a scarf...I keep covered...I keep it warm in my house and avoid air conditioning during the summer. Full weight bearing also causes my pain levels to increase quickly so I use a walker now and it takes all day for me to get as bad as I do in 30 minutes without the walker.

And...I know this isn't a quick fix...but physical therapy was really the best thing for me. It hurt like hell to go through it and it took a good 6 months of daily therapy and exercises to get me back on my feet and another 6 months before I was really fully functioning...but it helped me so much. You cannot discount how much worse the pain gets with immobilization and disuse.

I hope that you are able to find some meds to help make this more bearable for you.

Yes, I am trying other methods and still researching new ones to try. I have a space heater in my room, I elevate which helps and I just bought fluffy pants that I am hoping will keep me warm and that I can stand to touch me. The cold is definitely really bad news for me and weight bearing. I like the baths, but once I get out it is almost worse than when I got in. I drink chamomile and tension tamer tea to try to keep me relaxed and have started new vitamins to see if that makes a difference. I am now researching nutrietion and diet. I am thinking of trying to loose some weight to see if that helps. I am in PT 3 times a week and I do think it makes a difference. I have this lididerm/keto type cream and it worked really well, but when it spread it started to "burn" me. It wasn't really but it just felt like it was. And I don't do the lidoderm patches because I am a whimp! I can't take the pain of taking them off. It hurts too bad. I just don't know what else to try! I feel like all I do is research and I am getting no where. argggg!!! lol
Angelina

[loretta]

Originally Posted by Angelina55

Me? Sleep? What is that? Lol no I don't get much sleep, maybe four hours all together and not at the same time. I saw my family doc today and he put me on gabapentin (sp?) and I am seeing a neurologist for my migraines and I will be seeing her on the 28th so I will talk to her about it. And yes most of the time if I am lucky my pain is a 9. 85% of the time it is a 10. It is so unbearable that I don't know what to do, I feel like my body is going to shut down on me. My blood pressure is dropping. It was low today. And I can feel it when I am home. My dad has a machine and I think I am going to start keeping track of it. Ever since it spread through my leg, I just never get relief unless I am laying in bed and then it only goes down to an 8 for a couple hours while on my pain killers. I will talk to my doctor about those meds. Thank you!!!
Angelina

Angelina, Does your neurologist have experience-knowledge of crps?
You mentioned your family Dr. putting you on gabapentin-which is the same thing as neurotin. It is used for crps. Are you still taking the lyrica??? I know you feel like you are going in circles-but do you have ONE Dr. managing your crps-meds?
I have high blood pressure and am on meds, but I also get low pressure as I mentioned before and get syncope-(passing out) So getting a cuff and keeping a diary of your pressure may be a very good idea. I take my diary to my dr. so she can keep track of it and make adjustment in meds if she feels I need that.
I've been seeing her the last year and half. Before that had my neuro for 6-7 years. But lost my insurance.
My neurologist was very concerned when I wasn't sleeping-it greatly increases pain. He said-not acceptable- Having a crps doc that understands it is very important= to script the combination of appropriate meds in the right amount-making adjustments as we need. I hope you find that person soon. Are you taking an anti-depressant? Many of us do. It's a combination of various meds that work for many of us.
You are in so much pain. Are you still in pt 3 days a week? there is a big discusssion here on neurotalk about 2 years ago on lyrica and neurotin. I went back and looked at it. Some took both- some took one OR the other. Maybe others will have some thoughts. I've taken both but NOT at the same time. Just concerned and know you are overwhelmed. loretta

[Angelina55]

Originally Posted by loretta

Angelina, Does your neurologist have experience-knowledge of crps?
You mentioned your family Dr. putting you on gabapentin-which is the same thing as neurotin. It is used for crps. Are you still taking the lyrica??? I know you feel like you are going in circles-but do you have ONE Dr. managing your crps-meds?
I have high blood pressure and am on meds, but I also get low pressure as I mentioned before and get syncope-(passing out) So getting a cuff and keeping a diary of your pressure may be a very good idea. I take my diary to my dr. so she can keep track of it and make adjustment in meds if she feels I need that.
I've been seeing her the last year and half. Before that had my neuro for 6-7 years. But lost my insurance.
My neurologist was very concerned when I wasn't sleeping-it greatly increases pain. He said-not acceptable- Having a crps doc that understands it is very important= to script the combination of appropriate meds in the right amount-making adjustments as we need. I hope you find that person soon. Are you taking an anti-depressant? Many of us do. It's a combination of various meds that work for many of us.
You are in so much pain. Are you still in pt 3 days a week? there is a big discusssion here on neurotalk about 2 years ago on lyrica and neurotin. I went back and looked at it. Some took both- some took one OR the other. Maybe others will have some thoughts. I've taken both but NOT at the same time. Just concerned and know you are overwhelmed. loretta

Thank you for your concern, it is nice that at least one person cares about me. No I do not have one doctor in "control". I don't know if she knows about CRPS, that will be my first question for her. And right now finding that one doc to oversee everything is my number one concern. I need someone to help walk me through this. I feel like I am getting worse not better. I am going in the wrong direction. I know I have only had this for only 6 months, but I caught it fast and I don't think I should be getting worse.
I have pre-existing depression and mental health issues, so for those I am taking lexapro and abilify.
For sleep I am taking Trazadone. But it doesn't seem to work. I am in so much pain that it wakes me up and I can't fall back to sleep.
Could there be a problem with taking both lyrica and neurotin? Maybe I will start a thread on it. I will have to also look it up to make sure. I don't feel like the Lyrica is really doing anything but make me drowsy. But I wouldn't really know unless I stop taking it. And I don't really have any CRPS meds. except for the pain killers, everything I am taking was because of a pre-existing injury. Oh and the muscle relaxers I was just put on. I think I need some kind of anxiety med because when the pain gets bad I get panic attacks. Is that normal? I just like start freaking out and can't breath and my heart feels like it is going to jump out of my chest!
Angelina

[ger715]

Angelina,
I have similiar pain as you describe from waist to toes. I also has lumbar fusion and laminectomy lower spine. Have PN, the burning ankles feet, heavy legs, etc. I have been seeing a Pain Specialist for a few years now. My pain is not gone; but at least the meds get me thru the day. Unfortunately, they are narcotics; Oxycontin, as well as percocet for breakthru pain. I use AmbinCR to sleep; otherwise just painful laying down. With the Ambin, I at least get a good 5 hrs. sleep.

I hope you can get some relief. My suggestion would be to see a Pain Specialist.

Gerry

[Angelina55]

Originally Posted by ger715

Angelina,
I have similiar pain as you describe from waist to toes. I also has lumbar fusion and laminectomy lower spine. Have PN, the burning ankles feet, heavy legs, etc. I have been seeing a Pain Specialist for a few years now. My pain is not gone; but at least the meds get me thru the day. Unfortunately, they are narcotics; Oxycontin, as well as percocet for breakthru pain. I use AmbinCR to sleep; otherwise just painful laying down. With the Ambin, I at least get a good 5 hrs. sleep.

I hope you can get some relief. My suggestion would be to see a Pain Specialist.

Gerry

Thank you for your response. I am so sorry for your pain. I am seeing a pain specialist, but for some reason he doesn't want to be the one to handle my "case". I don't get to see the doctor just his NP, and I always get the feeling like he doesn't want to see me again. He always has a reason for why someone else should handle my meds or why I don't need to make another appointment to come back. I too take narcotics to get through the day. I wouldn't be able to take care of myself and my daughter if not for having them. I am hoping that one day I won't need them but for now I will do what I have to to get through this. I will not be a "victim". I wish you all the luck in the world. It helps knowing you are not the only one going through this hell, ya know?
Angelina

[loretta]

Originally Posted by Angelina55

Thank you for your concern, it is nice that at least one person cares about me. No I do not have one doctor in "control". I don't know if she knows about CRPS, that will be my first question for her. And right now finding that one doc to oversee everything is my number one concern. I need someone to help walk me through this. I feel like I am getting worse not better. I am going in the wrong direction. I know I have only had this for only 6 months, but I caught it fast and I don't think I should be getting worse.
I have pre-existing depression and mental health issues, so for those I am taking lexapro and abilify.
For sleep I am taking Trazadone. But it doesn't seem to work. I am in so much pain that it wakes me up and I can't fall back to sleep.
Could there be a problem with taking both lyrica and neurotin? Maybe I will start a thread on it. I will have to also look it up to make sure. I don't feel like the Lyrica is really doing anything but make me drowsy. But I wouldn't really know unless I stop taking it. And I don't really have any CRPS meds. except for the pain killers, everything I am taking was because of a pre-existing injury. Oh and the muscle relaxers I was just put on. I think I need some kind of anxiety med because when the pain gets bad I get panic attacks. Is that normal? I just like start freaking out and can't breath and my heart feels like it is going to jump out of my chest!
Angelina

Hi Angelina, Do I have this right- you are on lyrica from your pain doc- and your family doc just prescribed neurotin? Is that right? If so, did the family doc know your are already on lyrica? There is an old thread october 2008 on the two meds, but I would start a new one and ask for input.
Personally, I was on neurotin for years, then dr. had me go off it and started me on lyrica. Lyrica became the newer drug. Some can take one and not the other, I think it is important you find out about taking 'both' at same time.
These are all meds that crps drs put us on to help with nerve pain etc. neurotin or lyrica, anti-depressants, narcotics, sleep med, anti-anxiety med,
Did you say you are seeing the neurologist Feb 28th? Can you call and ask if he/she has knowledge of crps? If so, perhaps you can get on a wait list for earlier appointment?
There are so many knowledeable people here with lots of experience. I'm sure you will get some good input on a lyrica-neurotin thread asking for help.
Of course, we are all different and what works for one doesn't for another.
But it's the taking BOTH that I have questions about.
Take care, loretta