CRPS

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i have been told I have Crps but it is hard to actually diagnose this as there are so man different symptoms, my question is has anyone tried lyrica? I have read lots of bad reactions to this drug and truthfully am wondering whether to just put up with it. I mean I am not in agony, just continuous stiffness in fingers. I broke my shoulder 11months ago, if it is a nerve disorder maybe I will only get worse.

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  • Posted

    Hi I am trying to take 50mg pet day. I started on 25mg in evening one tablet. I now try 25mg in Morning. It takes the edge off my constant throbbing pain. Doctor said q150mg is minimum what I should be taking but I feel too sleepy on more. It does help with my anxiety I get from pain.

    It's in my left foot. I feel like it's destroying my life. Do you get Physio

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  • Posted

    I've not yet tried Lyrica, but my doc said that is something I could look into in the future.  Right now, I'm upping Gabapentin, currently the time released version - 600mg morning, 600mg afternoon, 900mg at night - will be upping to 1200mg three times daily.

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  • Posted

    I have really bad nerve damage, and lyrica seemed to help the 2 weeks I was on it, but insurance problems I couldn't continue. I've heard weight gain is a concern. I was previously on gabapentin for 4 months, which it helped, but I was like a zombie. Unable to even keep my eyes open. I already have fatigue problems so I eventually discontinued it.

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  • Posted

    Hi Heather. I'm so sorry to hear you have this horrible disease. I've been a CRPS warrior since 2012. I did take Lyrica and it helped with the pain after I got to a really high dose of 2,400mg every 24 hours. I began to gain weight really fast. I ended up gaining 82 lbs in a 5 month period,..... not a typo, 82 lbs! I also started having all the side effects and it completely shut my bowls down, so I had to get off it. I've talked to a lot of people that have tried Lyrica and all of them gain lots of weight like me, which in turn caused more health problems.

    Maybe if you can get pain relief at a low dose you won't gain the weight like me and so many others.

    I pray you find something that works for you and will give you good pain relief!

    God bless,

    Browneyes

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    • Posted

      Hi brown eyes 2400mg that is huge !!! How did you even function. On 25/50mg I am all sleepie /head feels spaced. It does take the edge off pain the last two days I am not shouting as much at my kids I feel sorry for them ! The pain makes my brain feel crazy. What do you do for pain now. I have it 4 'months. I can't work and can't drive as it's my left foot. I loved to run before I can hardly walk or it flares up. Any advice on exercise. Will it calm down ??

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    • Posted

      Hi Brenda Savvy,

      I am so sorry to hear you have this ugly monster called CRPS. And I can't imagine having this with children at home or having to work. My kids are grown and I haven't worked since 2006.My husband has made a good living for us and gave me the luxury of not working after our kids college was paid for. I thank God for that blessing! I do have grandchildren and I hate that I can't enjoy doing things with them like I did before CRPS!

      The 2,400mg dose of Lyrica was slowly increased up over almost a year. I didn't "feel" spaced out at the time, but as I look back at that time, it is a fuzzy blur and my short term memory was gone. I stayed on it that long, in spite of all the weight gain, because I was getting some pain relief for the first time in two years of trying just about everything out there. Nothing up to that point had put a dent in my pain. I was a fetus, rolled up in a ball, in bed, crying pretty much 24/7.

      I didn't think I'd make it through the first two years! In spite of all the pain, I had to drag myself out of bed, shower, and get dressed, (which felt like a weeks worth of work) and get to ordered test, MRI, sonograms, CT scans, physical therapy, sympathetic nerve blocks, epidural steroid injections, acupuncture, massage therapy, Dr's appointments....... You name it, I tried it to find some kind of relief....NOTHING WAS HELPING!

      I'd swore I'd never take Lyrica because I had heard of the weight gain and how hard it is on your liver, but, as you know, when your in that much pain, you would try ANYTHING someone offered that gave a glimpse of hope for some pain relief! Anyway, my neurologist gave me a sample pack to try. I came home and threw them on the coffee table, frustrated that all that was being offered to help me was more pills! That night was a super bad night and I couldn't get any sleep. After fighting the bed for hours, I got up and went into the living room......and there lay the Lyrics. I thought, "it won't hut to take just one." So, I took my first Lyrica and in about 30 minutes I drifted off to sleep and slept the best 4 straight hours I had slept since this nightmare had started! This made me a believer until I couldn't stop gaining weight and all the side effects became too much. I winged myself off Lyrica and then

      December 2014 I had an intrathecal pain pump implanted. It has helped with the pain. It's not a cure or a "fix all," but I do get pain relief......not 100%, but 30 to 40%, better than anything else I've tried. As my PM Dr says, "it's just another tool in the tool box." I have Morphine, Clonidine and Droperidol, a med for nausea, I'm my pump. I was getting, as I said, 30 - 40% pain relief, except for flares and weather changes, then in February this year I had to have emergency lumbar surgery and the catheter to my pump was in the way and had to be pulled. I had to go back on oral meds for 5 weeks. Then my PM dr went back in and reattached my catheter. I had to be slowly tittered back to 2mg a day(what I was getting in my pump before the surgery) but that wasn't covering the pain as before the surgery, so I've slowly been turned up to a little over 5mg in a 24 hr period with 4 boluses a day. This has still not covered my pain as well as before the surgery. The surgery also caused the CRPS to spread to my other leg and foot. In the past couple of months it has continue to spread to my right elbow and my face.

      Sorry this is so long......my apologies.

      I pray you can find what will work for you and that you have low pain/no pain days ahead.

      Browneyes

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  • Posted

    Hello, I took Lyrica for about 12 months @ 100mg 2x a day. It helped more than anything else I have tried. But I found out from my wife and friends that I had completely lost my short term memory. It is not something you notice yourself because you don't remember what you just said or did, but other people do notice it. It is not listed as a side effect but DRs know about it. I stopped using it because of this. It took about 3 months before my memory became normal again. Someone needs to have the manufacturer add this to the listed side effects because I think it is a very serious deal. It does not do this to everyone, but it is a possible side effect. FYI and good luck!

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  • Posted

    Heather72469,

         My son was diagnosed with RSD/CRPS back in June of this year and when I finally found a doctor he started him on Lyrica he started out with taking 40 mg's a day and then the doctor upped it to 50 mg's and the last time he went he went up to 75 due to the fact that my son was still having excessive swelling and having a lot of trouble sleeping. At the beginning of all of this he gained 30 lbs, not from the Lyrica that was before he started taking that but after he started taking it he has lost about 20 of the 30 he gained, I think it's all according to the person and how they react to it. He was swelling so bad though that he got extreme stretch marks where he swelled so bad and then would go down and then back up again. I hope things get figured out soon for you because it's something nobody should have to go through, I know i feel so helpless watching all the things that my son has had to endure at such a young age of 16. Good Luck with finding what will help you and keep up updated in what works for you because that's what this group does I've never seen a more supportive group of people but you know sticking together is the key to finding out what will eventually help everyone hopefully. May God Bless and keep you is my prayers and I hope you are feeling better soon...

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  • Posted

    My question to people out there is did they actually get a diagnosis or was it assumed that it was CRPS because from all my research it is really hard to diagnose unless you are in agony which I am not just discomfort well more thanthat. Should I stick with lyrica or come off it, it does help a wee bit.
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    • Posted

      I came off mine for 4 days. I defo felt my head improved. Thought process clearer etc. But on day 4 major pain. So I had to go back.
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    • Posted

      Heather,

           Early diagnosis is the key to keeping from being in so much pain, so the sooner you get something to start soothing those nerves the better off you'll be, the longer you wait the more pain you will be in. My son got up going to the bathroom and he said it was like everything stopped working and he was on crutches anyways and he fell face first into the floor, so please get on something for the nerves so you will at least be starting to try to heal them. I wish you all the luck in the world. Keep us updated...

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  • Posted

     and it has hurt me, my family and my relationships. I am seeking the proper MD to evaluate my CRPS even though my pain clinic doctors have been wonderful.

     

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  • Posted

    Heather,

         My son was diagnosed in June of last year and the doctor put him on Lyrica, it has seemed to help and he's not on a large dose of it, he currently is taking 50 mg's at bedtime and it has helped with the swelling and he actually lost weight when he went on it he had so much swelling before & had gained 30 pounds before being diagnosed then after he was put on the med's he lost 20 pounds I think you just can't be on such a high dose that it causes more swelling since CRPS causes swelling anyways. Just thought I would share. 

     

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