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 04-01-2010, 11:48 AM #1
ElyseHart ElyseHart is offline
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Default Symptoms of a bad CRPS flare

I was desperate for help so I searched the Internet and I found this site. I have struggled with CRPS type 2 for almost five years. I have learned over time how to manage my pain, swelling, depression, anxiety, dystrophy and all the other miserable problems I have developed as a result of this disease. However, I have been in a miserable flare for almost two weeks and I can't seem to get my sympathetic system to calm down. I took my two kids to visit my sister in CA two weeks ago and since I have been back home I have had miserable burning pain, muscle jerks, insomnia and panic attacks. I have not suffered with panic since my early years dealing with CRPS. I am shocked to have it rear its ugly head again. What is going on? What do I do? I take 100mg of Lyrica at night and 1 or 2 Flexerel daily. I also take Ativan as needed so I took a .5mg tablet every day of the vacation. I stopped this when I got back home, so I took it for 12 days. Could this be part of the problem? This medication combo has worked well for over three years but now I am a mess. I welcome any comments or suggestions.

Elyse
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Old 04-01-2010, 12:45 PM #2
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Quote:
Originally Posted by ElyseHart View Post
I was desperate for help so I searched the Internet and I found this site. I have struggled with CRPS type 2 for almost five years. I have learned over time how to manage my pain, swelling, depression, anxiety, dystrophy and all the other miserable problems I have developed as a result of this disease. However, I have been in a miserable flare for almost two weeks and I can't seem to get my sympathetic system to calm down. I took my two kids to visit my sister in CA two weeks ago and since I have been back home I have had miserable burning pain, muscle jerks, insomnia and panic attacks. I have not suffered with panic since my early years dealing with CRPS. I am shocked to have it rear its ugly head again. What is going on? What do I do? I take 100mg of Lyrica at night and 1 or 2 Flexerel daily. I also take Ativan as needed so I took a .5mg tablet every day of the vacation. I stopped this when I got back home, so I took it for 12 days. Could this be part of the problem? This medication combo has worked well for over three years but now I am a mess. I welcome any comments or suggestions.

Elyse
Elyse..

I am very sorry for your pain and flare... RSD does that it can sneak up on you at any given moment for no apparent reason to beat the living pulp out of us...Have you called your Dr. in possibly they can give you something to at least calm your system down?? I am not able to take meds for my pain but I have heard that our systems "get use" to meds after time and they longer are as effective..Possibly that is why you are not getting the relief..I suggest call your Dr. and explain what you have told us and in the mean time..go outside and face the sunshine..as the warmth may help you relax and bring some surine feeling over you... I pray you will find some relief as we all know what a 4 headed animal RSD can be....

Hugz, Kathy
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Old 04-01-2010, 02:28 PM #3
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Kathy - thank you for the kind words of support. I saw my GP this past Tuesday. She refilled the Flexerel and suggested I take 2 per day instead of one. She also said I could try going back on the Ativan daily. I use to take Ativan daily and it made me real dizzy. I may just do it again to see if it helps calm the pain. This is so draining.
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Old 04-01-2010, 02:47 PM #4
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Originally Posted by ElyseHart View Post
Kathy - thank you for the kind words of support. I saw my GP this past Tuesday. She refilled the Flexerel and suggested I take 2 per day instead of one. She also said I could try going back on the Ativan daily. I use to take Ativan daily and it made me real dizzy. I may just do it again to see if it helps calm the pain. This is so draining.
Elyse...Oh yes it is...very draining..it raises havic with every part of us..our minds..body, spirit.. hold strong as the good days will happen once you get yourself on a better regime that will give you osme relief...I am sorry...

Hugz, kathy
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Old 04-01-2010, 09:01 PM #5
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I feel you....I just got over the worst flare that I have had in 2 years...my doctor put me on Baclofen and it has REALLY helped...I take Elavil and Celexa plus Xanax. Lyrica made me hallucinate...I found out that it is one of the allergic reactions to it. I can't take any anti seizure meds either so I am basically in limbo between RSD and CRPS2...they can't decide... I hope you start feeling better
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Old 04-02-2010, 03:37 PM #6
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Quote:
Originally Posted by ElyseHart View Post
I was desperate for help so I searched the Internet and I found this site. I have struggled with CRPS type 2 for almost five years. I have learned over time how to manage my pain, swelling, depression, anxiety, dystrophy and all the other miserable problems I have developed as a result of this disease. However, I have been in a miserable flare for almost two weeks and I can't seem to get my sympathetic system to calm down. I took my two kids to visit my sister in CA two weeks ago and since I have been back home I have had miserable burning pain, muscle jerks, insomnia and panic attacks. I have not suffered with panic since my early years dealing with CRPS. I am shocked to have it rear its ugly head again. What is going on? What do I do? I take 100mg of Lyrica at night and 1 or 2 Flexerel daily. I also take Ativan as needed so I took a .5mg tablet every day of the vacation. I stopped this when I got back home, so I took it for 12 days. Could this be part of the problem? This medication combo has worked well for over three years but now I am a mess. I welcome any comments or suggestions.

Elyse
Hi Elysehart; and a big YES to flares on vacations and more so after vacations. I always go into a flare even after a small weekend getaway. I am at the point now where I tell my husband to go without me. I always anticipate and try to plan things prior to going, that is overwhelming, then I get there I am already worn out from the preplanning and have to rest for a day or two, my pain is always more aggresive due to climate changes, if we are visiting family, they always have things planned, that is overwhelming. And then of course, you mentally fight the pain, (which makes it worse) because you don't want anyone to notice. There is so much you have to put into a vacation, that alone is overwhelming to out bodies. But...with all that said...I truly do love my family time so I just adjust my medication (with doc) for about three weeks and usually my body adjusts back to normalcy. Hope you and your family had a wonderful trip and made unforgettable memories.

God Bless

Jeanie
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Old 04-03-2010, 04:54 AM #7
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My last 4 day vacation cost me the following 2 weeks in bed. I probably also blew out my liver from the Tylenol content of the Norco I was downing like candy just to function.

Hope things improve for you quickly !
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Old 04-03-2010, 09:14 PM #8
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I appreciate the support from everyone. I did go in to my neurologist at the end of the week and she put me on a 7-day course of prednisone to see if it would calm the flare and the swelling. Well, the pain is still bad but the swelling is going down a bit. It could be from the propping of the arm too. But the bad thing is the prednisone makes my heart race any ramps up my sympathetic nervous system. I have 5 more days to go, so I will see it it helps. I am still so miserable and frustrated. I keep thinking I can act like my old self and do the things I use to do and be the person I once was...not going to happen I am afraid. It can be a bit depressing at times. What do you do to help calm down? I am just a bit on edge from the flare.

Elyse
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Old 04-05-2010, 10:27 AM #9
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I am sorry you are facing this. I hope the prednisone helps. I can relate to the anxiety that comes with flare ups. I am on anxiety meds to help but it only does to a degree. I try to self talk that I have had times of flare ups like it before and I get through. Also to take one day at a time or even 1 hour at a time. Sometimes a distraction even calling someone can help. It is hard to find balance with rsd to where you still try to live life the best you can but not over do it I know. Hang in there and feel better.
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Old 12-11-2012, 02:10 AM #10
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We always take the first picture of our vacations.... me in bed for a few days! Can someone answer or help with this.....
I have flares that last months....the last is lasting almost a year. No, I'm not teasing. Has FM gone into a full blown RSD? Flares do not do this, and it is different. In your expert opinon (no one is more an expert that those who experience it!), what is happening to me? First, 11 years ago, auto accident, was dystonia. Thought I'd die of neck/back pain. Then trunk pain. Then Stomach pain, then leg pain and had to fight for a wheelchair. (it would keep me from being active). I told them if I had a wheelchair I COULD get out a do more! Then, with meds, got better, went to back and forth flares, now, the flare never ends. The neuro muscular massage person says my neck and back should be killing me, but all I can feel is the horrible pain of my pelvis and legs. Can hardly walk, and back to wheelchair. I am coming down from morphine for a trial of pain pump, so would expect to regress. But the flares were already doing this before. Thanks.
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