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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Feeling Discouraged.

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Old 03-29-2012, 04:01 PM   #1
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april1985 HB Userapril1985 HB Userapril1985 HB Userapril1985 HB User
Unhappy Feeling Discouraged.

In December I was diagnosed with CRPS in my right leg following flat foot reconstructive surgery in Feb. I've been dealing with nerve pain, very tight muscles, muscle spasms, sensitivity to touch, and tremors from my hip all the way down to my toes. The past two weeks I've been having similiar symptoms in my left leg. I've developed pain, muscle tightness, and a slight tremor. I'm really afraid that it is spreading and I don't know what else to do.

I was suppose to get a nerve block back in late Feb. however I ended up in the hospital that week with heart problems (my resting pulse was upto 174) due to my pain management doctor taking me off of the Clonodine patch that I had been wearing only for pain. I never had high blood pressure or high pulse rate until my doctor discontinued the patch. I've now learned that rebound high blood pressure is a side effect when stopping the Clonodine patch. Now on top of everything else I'm on a beta blocker at the young age of 26. Because of ending up in the hospital, my nerve block was cancelled. Now the soonest I can get in is the last week in April. Ugh! I want some relief!!

I'm currently taking Neurotin 600mg 3x a day, Flexeril 10mg 3x a day, Ultram 50mg 4x a day, Voltaren 2x a day, and yesterday I was just put on Valium 5 mg at bedtime. I'm doing home physical therapy exercises every day and have been going to physical therapy for 2 to 3 times a week for the past year. I haven't missed a week yet and I'm freaking out as I feel like I've done everything I'm suppose to. Yet there is a good chance that its spreading!! I feel like I'm losing control of my body.

Any adivice on how to get through this? I'm only 26 and have my whole life ahead of me. Anyone else with similiar experiences?

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Old 03-30-2012, 05:59 AM   #2
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Join Date: Mar 2012
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TinyHef HB User
Re: Feeling Discouraged.

I feel like I just read about myself. I'm so sorry you have to go through this. I have so much to say that I don't know where to begin! It's my right leg also. I saw your biofreeze reply. Thanks. It helps me too. I've been prescribed Lidederm patches to wear at night, but I found they lower my blood pressure. I already have low pressure to begin with. I didn't know for the longest time why I was always tired. I haven't tried massage yet though. I think I will.

Physical Therapy - I discovered I am unable to do "Land" therapy. That's what they call normal PT. It made me worse. I've gone through it twice. I also went through Pool therapy in a heated pool only to discover my body cannot take the heat. So I try to go to the indoor pool at the Y. Stretching is very important and doing it in water, of course, saves a lot of energy due to the weightlessness.

What you are going through is normal. I have discovered that medications have everything to do in how you feel. I cannot take the patches. Got very sick. BP went UP. And any kind of nerve/seizure medicine, like Neurontin or Lyrica, NOT good with me. I become a mean, irritable, angry Mom and wife. Terrible experiences. I got dizzy and my blood pressure went UP. I'm finding CRPS is a constant learning experience. I take 90mg Cymbalta. My doc recently upped it from 60mg. Major difference for the better. I take Percocet 7.5/325 4x day. I am religious about it. No more than 4. And I take it at the exact same time everyday. I also use a muscle relaxer on occasion, Skelaxin. If I take it too much, I get fatiqued and BP goes down. I also deal with Major Depressive Disorder, Panic and Anxiety Disorders. For those situations, I take Ativan. For bedtime I have to take Restoril. It's a Benzo, but one of the weakest and one of the weakest sleep meds. If I don't take it, I wake up after my pain pill has worn off. The pain is indescribable. So, I must stay asleep. CRPS definitely messes with blood pressures, I'm convinced. RSD/CRPS is part of the Sympathetic Nervous System...Autonomic NS...heart, blood pressure, internal organs, etc. All the involuntary systems we have no control over.

I have a psychologist along with the pain interventionalist. Both work for the same company. My psychologist helps me with the anxiety and depression that comes with pain. It's a must for me. My doctors work together and discuss back and forth, so it's a win/win.

Two days ago I broke down and bought a walker. Let me tell you, it has changed my whole attitude. I feel like a new person. I'm not afraid to go anywhere now. The walker totally saves energy and pain. You don't realize how much CRPS drains you until you have something holding up your upper body. It folds up and fits in my trunk easily. I would highly recommend one. I have both kinds of crutches for around the house, but using them to go places was wearing me out.

I'm scheduled for the Reflex Sympathetic Nerve Block in April. I'm sorry you couldn't get yours. You will. My CRPS came from 4 spine surgeries within too close of time. I understand it can come from surgeries. I guess surgeries are considered trauma too. At least they ARE in my book! Have you seen a cardiologist? Sorry if you stated you had. I went and had a full workup after having to call 911 from a sever anxiety attack last summer.

I'll stop boring you now! Take care of yourself. Keep me posted.

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