Thread: Newly diagnosed
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Old 02-05-2013, 09:54 AM
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Angelina55 Angelina55 is offline
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Join Date: Feb 2013
Location: Post Falls, ID
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Angelina55 Angelina55 is offline
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Join Date: Feb 2013
Location: Post Falls, ID
Posts: 175
10 yr Member
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Originally Posted by loretta View Post
Angelina, I'm doing OK, thank you. I have had some burning and tearing in my eyes, but nothing today. So won't panic about that.
I've had RSD since 96, but not diagnosed for 5 years. It is full body or 'generalized' But I am mobile and some of my severe symptoms that I had for so many years are non existent now. Like the uncontrollable spasms in arms and legs, the electric jolts that traveled thru by body out of nowhere. I was on 3200 mg of neurotin for years but no longer take it. Also, I no longer have touch sensitivity issues. I attribute that to PT 3 days a week, as well as 7 days a week at home. I forget if I told you, my therapist had me get several plastic bowls and put different things in them, like botton balls, rice, sugar, coffee grounds, etc and run fingers thru them.
The extensive PT gave me back nearly all range of motion in both shoulders and later when I lost my left hand -frozen like a board. the PT gave me partial use of fingers again. Also, when it moved to feet and toes curled off the floor, daily exercises in warm water got them back down to floor. So I'm so grateful for not being crippled like some are.
I have issues with my heart rate and blood pressure. I am 64 and on blood pressure medice for high BP. and a heart med to slow the heart rate down. RSD is a disregulation of the autonomic nervous system. It's the 'fight or flight' part of our nervous system. It regulates our blood pressure, heart rate, body temperature etc. That is why we can be burning up or ice cold. Why we can have high blood pressure or on occassion it drops so low we can pass out. It's called syncope. I've passed out several times. Also why our heart rate can go high or low. This disregulation explains why anxiety for many of us is an issue.
After I got RSD, I couldn't understand why I was experiencing anxiety issues out of the blue. It wasn't until I learned about the connection of RSD and the autonomic nervous system that I understood the reasons why. Look it up on Wikipedia. It breaks down the sympathetic nervous systemm, para sympathetic nervous system and the vegas nerve.
You'll find a lot of comfort and support here. Education is key. Taking charge of your health is key. Start a file and keep track of your medical care and all tests-like blood work etc. your blood pressure and know your numbers.
It is such a complicated condition-And everyone is different and responds differently to various meds and treatment. You will be the one who will suffer if your treatment goes south. Fortunately, I have had some very good Drs. But that wasn't an accident. One Rheumy said I had RA. Swollen hand, sensitive to touch, burning up- and frozen like a board. That didn't make sense, as my tests were negative for RA and it happened after an injury. So I went to a sports injury ortho hand doc and he knew in 1 minute it was RSD. Tests positive. Neuro did more tests and positive. So I am grateful I listened to that inner voice and went to the hand specialist.
Ask questions here, and reach out. even read old posts. experience of others here and learning from their research will really help you. It also gives you a sense of control over your health. knowledge is power.
How is your daughter doing? I have one daughter-33 and married. She is a court reporter. Has done one deposition on RSD for a malpractice lawsuit. I live in Arizona. The winters are wonderful for RSD, but the summers are brutal. My feet burn up. At times, though they can be like frozen ice cubes. strange huh. That's the hot/cold disfunction.
How are you doing? I never was on muscle relaxers but ask others. I take mirtazapine- an anti-depressant. Because it was 5 years before I was diagnosed, I didn't try the blocks. The PT was the main thing for me. Swimming was a huge help for me also. The water needs to be 86 degrees. I belong to a health club with indoor pool and they keep it at 86. Take care, loretta
Thank you that was alot of great info for me. I had no idea about the blood pressure. I used to have kinda high blood pressure and now it is pretty low. and really low for me. My foot is always cold. I live in Idaho and the winter is brutal for me. The cold weather is terrible for my pain. I am hoping that the summer will be better. I keep my room hot and that seems to help. I think I am going to try muscle relaxers to see if that will help. The last few days my symptoms and pain have spread up my leg into my lower back, and I can't stand it. It always feels like it is tensed up and the spasms are so bad. I am so greatful for my PT. He has delt with RSD before many times and his mother has it so he is very familiar with it. I just sprained that ankle so we haven't been able to push very much lately. I have started a binder that I print info and keep organized with what I find helpful. I have also started looking into herbal remedies cuz anything that helps right? I just am having a hard time keeping my hope and spirits up. It just seems to keep getting worse. I think I just need to learn more about it. Which I will. My daughter is turning 6 in a couple weeks and I feel awful because her party is at a skating rink and the first thing she said to me is that she was sorry that I couldn't skate with her and that she could choose somewhere else if I wanted her to. She is such an amazing little girl! She is handling this very well. But I have always had health issues. I have had seven surgeries, so she is used to mommy being hurt. She always wants to help and is always asking me if she can get me anything and telling me to sit down and do what the doctors say. LOL I just don't want this to make her grow up too fast. But I am doing my best and I love her with all my heart! That is all us parents can do.
Angelina
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