Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 04-30-2009, 10:00 AM #1
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Ali,

I was on Lyrica for about 2 weeks..and had to get off as I gained 20 POUNDS within that time, and I felt drunk when I was on it! I was prescribed 4, 150 mg. capsules per day.

It was horrible. I stopped after I had an incident where I kept repeating the same word over and over" windshield,windshield,windshield,windshield"..and could not stop hysterical laughter (for over 20 miles in a car w/family). They thought I was hilarious, but my tears from the laughter were not from happiness, it was pain!
We had just left the carwash in my son's car..and I was looking at the windshield..and out came the word...I had no control over my speech at all. Scared me,BIG TIME!

My withdrawal symptoms included wild nightmares..I can't imagine what the withdrawal symptoms would have been if I had stayed on it longer
It took me 2 more weeks to drop that 20 lbs that packed on from the use of the med. I still felt burning pain..this drug is not right for me. What does work is 2400 mg. of Neurontin;Cymbalta;Ultram ER 300 mg, and now, Opana ER.

Hang in there
Dew
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WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009.
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Old 04-30-2009, 10:16 AM #2
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Originally Posted by Dew58 View Post
Ali,

I was on Lyrica for about 2 weeks..and had to get off as I gained 20 POUNDS within that time, and I felt drunk when I was on it! I was prescribed 4, 150 mg. capsules per day.

It was horrible. I stopped after I had an incident where I kept repeating the same word over and over" windshield,windshield,windshield,windshield"..and could not stop hysterical laughter (for over 20 miles in a car w/family). They thought I was hilarious, but my tears from the laughter were not from happiness, it was pain!
We had just left the carwash in my son's car..and I was looking at the windshield..and out came the word...I had no control over my speech at all. Scared me,BIG TIME!

My withdrawal symptoms included wild nightmares..I can't imagine what the withdrawal symptoms would have been if I had stayed on it longer
It took me 2 more weeks to drop that 20 lbs that packed on from the use of the med. I still felt burning pain..this drug is not right for me. What does work is 2400 mg. of Neurontin;Cymbalta;Ultram ER 300 mg, and now, Opana ER.

Hang in there
Dew

Thank you Dew! As I mentioned in my previous post, this was from last year so thankfully, i'm not having the withdrawal symptoms now! It was absolutely horrendous coming off the Lyrica and it is something I never want to deal with again lol!

I'm sorry that you had problems on it also. I also gained a LOT of weight on Lyrica (I think it was about 30lbs in 2 months) and even though I am now off the Lyrica, the weight asn't come off. I never used to be really skinny but was just the right size and now I am overweight. My mum has contacted a program where we live to try and help disabled kids lose weight without having to exercise that much and they said that they would accept me as long as I got a GP's referal. I just want this weight to be gone ... i'm sick of not being able to fit into my old clothes ... I wouldn't mind too much if the Lyrica helped me but it didn't!!!

Thanks again for your post - i'm sure it will help someone and i'm sorry that you had a rough time on Lyrica also!!
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Old 11-24-2009, 12:17 PM #3
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Hi Ali12

I am a mother of a 13 year old son with RSD and he is taking 150mg Lyrica per day (prev 200mg), for how long did you have the withdrawal symptoms.

the best wishes from Gitte, Olivers mum
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Old 11-26-2009, 12:23 PM #4
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Default Lyrica withdrawal

I was prescribed 75 mg of Lyrica 3 times a day about 2 years ago. The doctor said it would help with the nerve pain I sometimes had with spinal stenosis and spinal arthritis. Some of the side effects I noticed were weight gain and a problem talking. Sometimes I just couldn't get the words out. It's very embarrassing. I talked to the doctor about it. She said that that symptom is usually caused when people don't take it 3 times a day, but only once or twice. She urged me to take it 3 times a day, or at the very least, not to skip the evening dose. The other night I was on the phone with my daughter and could barely talk. I decided to quit taking Lyrica yesterday. Surprise! Chills, fever, crying. At first I thought it might be the flu. But, just in case it was from stopping the medication, I took one last night and then slept well. This morning I had to take it again because of nerve pain. What's up with these withdrawal symptoms? I'm going to try to wean myself off slowly instead and will let everyone know how that goes! I'm open for suggestions, comments, etc. I feel just fine today - fever and chills are gone.
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Old 11-27-2009, 11:09 AM #5
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Hi Ali12

I am a mother of a 13 year old son with RSD and he is taking 150mg Lyrica per day (prev 200mg), for how long did you have the withdrawal symptoms.

the best wishes from Gitte, Olivers mum
Hi Gitte,

SO sorry to hear that your son also suffers from RSD at such a young age! Please know that I am here if either of you ever want to talk - I know how hard it can be dealing with this monster of an illness!

The withdrawals from the Lyrica lasted about 2 weeks. It was absolute h*ll during that time - I kept being sick, having severe panic attacks and mood swings etc. I remember how I used to hit my mum in the car whilst she was driving - that is something I would never dream of doing now and it makes me so sick knowing that I used to do that but had no control over it!

I hope your son doesn't have any problems if he decides to come off the Lyrica. I think part of my problem was that I was took off it too quickly and my body couldn't tolerate it.

Best wishes to you both!
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Old 08-17-2009, 09:08 PM #6
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Originally Posted by Dew58 View Post
Ali,

What does work is 2400 mg. of Neurontin;Cymbalta;Ultram ER 300 mg, and now, Opana ER.

Hang in there
Dew
Dew,
I just had to reply to your post. I was on 60mg of Cymbalta for only 2 months. My doctor wanted me to switch to Lyrica. Upon quitting Cymbalta I was hit with the worst withdrawal symptoms I have ever experienced. I am talking about extreme vomiting and twitching along with severe headaches and "brain zaps" (the feeling of lighting going off in your head). I do not recommend Cymbalta for ANYONE. However, I am not a doctor, so obviously listen to them. I just had to throw my caution your way.

Chad
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Old 08-19-2009, 02:58 PM #7
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Default Said it before...

...and now I'm saying it again.

Can not understand why any doctor does not try opiates first. Safer, much more likely to lessen the pain, and if ya need to come off of it, fairly easy, comparatively. (comparatively, mind you) I find it amusing that all the new drugs, which cost huge amounts of cash and are more dangerous, are the 'first choice'. Hmm...can you say kickbacks? I knew you could...
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Old 10-19-2009, 07:18 PM #8
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...and now I'm saying it again.

Can not understand why any doctor does not try opiates first. Safer, much more likely to lessen the pain, and if ya need to come off of it, fairly easy, comparatively. (comparatively, mind you) I find it amusing that all the new drugs, which cost huge amounts of cash and are more dangerous, are the 'first choice'. Hmm...can you say kickbacks? I knew you could...



Smoke..... How you been?

I must say, that I've been alarmed at the rate that these expensive meds are being written.
Thousand dollar a month drugs. WHAT? Would you pay that if you didn't have insurance?
Yea, yes, I've paid a lot for my insurance.
But, I don't consider it a reason, to simply get the most expensive treatment!
Expensive = Good Result? Haha, Try Again!

I've been a business person, all my life.
It doesn't add up to value.

I take methadone for pain. My doctor gives me samples of anything expensive. (I know, that costs too).

But, I still don't want to see my Ins. co. paying big bills! It doesn't boost my Ego!

My methadone, compared to anyone's OxyContin, is about $30/mos., add in the $15, for Miralax, the adjunct laxative that keeps things moving.
And, say, $45....
How's that compare to a Gee Whiz ($1000.) Script for some fancy thing that people sell too often on the street?
It just doesn't work for me, and yes, I've tried it.

I like old tried and true, things. in almost any phase of life.

Most Every person I've known personally to be put on OxyContin, has come off it, within a year.
Same with all the other "New" "HD" Pain relievers.

I, personally like to keep it simple.
And,, methadone has some problems. It can shut down your breathing! I have a bad case of Apnea, so I use a CPAP machine when I sleep.

There is No patent on Methadone!
So, it's inexpensive!
Why would anyone think that "they're worth" the most expensive drug?
Does it relieve your pain, to think or know that your ins. co is paying so much for you?
Gimme a Break....

It's been my prediction, to all my friends who have rsd, that, they'll be on methadone within a short period of time....
But, the Drug Company Sales People, who come in, EVERY MONTH, and order a big, paid for, lunch for the entire office, isn't pushing Methadone!
(Ya'll got your eyes open on this stuff?)

No, they want to sell the PROFIT MAKING DRUGS!
And,
it's getting "Pushed" onto YOU!
Feel good about that?
Then carry on....

If you're wisdom, rather than Ego driven, talk to your doctor, on an intelligent, and frank basis....

If you're thinking, what have you got to lose? I'll tell you in one word....

PAIN!

Be well, ,ya'll....

love, and peace,,,,,

pete
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Old 10-19-2009, 12:34 PM #9
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I am so glad I've found this site. I was prescribed Lyrica back in the beginning of August for Fibro, and some alarm bells should have started going off I guess when I started taking it. First I started with 25mg going to 50 twice a day. Problem was I was having side effects with every small dose, dizziness, little anxiety etc. I was going fine until I got a dental infection and needed IV antibiotics, and pain meds. I stopped taking the Lyrica due to all of the other meds I was taking. What a huge mistake. The withdrawal from the Lyrica has been horrible, severe dizziness, headaches and the anxiety has been unbearable, to the point I panic and feel like I am dying. I have just figured out reading this post that I am having withdrawal. Even yesterday the emergency Dr was baffled by my symptoms. Laying down I have really low blood pressure, bit just sitting up, my blood pressure sky rockets. I'm convinced it's withdrawal.

My question, has anyone else experience withdrawal on a low dose like this?
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Old 11-23-2009, 02:20 AM #10
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My question, has anyone else experience withdrawal on a low dose like this?
I have actually had good results with Lyrica. I am on 225MG per day, and I have not had a single side affect. I know that this does not help, except that you can know that not everyone has side affects while on Lyrica.

However, I said it earlier in this thread, beware of Cymbalta if your doc wants to go that route.

I do wish you luck, and hope that you find relief soon.

Chad
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