[Karlea60]

Hi,
I am new here and am so thankful I found this board. I sometimes feel pretty alone because if you look at me you don't see what I go through, so it is really hard for people to understand. I find a lot of people who don't care to know, it is more of a pain for them (at least that is how I feel). I have a lot of issues and I think they just feel over whelmed with it all. I have had thyroid cancer, been in several accidents, one very serious and have a TBI from that accident. Had a partial knee replacement done in 99 and have found out that the Dr. put the top piece in crooked and now I have to have a total knee replacement. Waiting to see when that will be.
I have had RSD for over 20 years. I was very blessed to have had a Dr. that realized what I had and got on it quickly. I have had a lot of LSB and praise Yahweh they have worked every time. I had a lumbar sympathetic block done in Aug. 2010 due to pain in my right foot and leg, it has always just been in my foot but has now moved up through my leg to my hip. It has gotten bad again and I have new symptoms along with the pain in my leg. I have been very dizzy with a headache for about a week now. I am just so afraid to get in the car and drive. I was wondering if any of you have had this issue? I have an appointment with my PM Dr. on Fri. but I have to get me there. Any replies will be so appreciated.

[daniella]

Hey welcome and I am sorry for all you are going through. I had a time where I had this dizzy,out of it,pressure feeling. It was about 6 months after dx and nothing changed at that tie in terms of meds etc. I guess that is my first ? have you changed meds? I used to think sometimes the dizzy etc was from being in such high pain and or also laying so much. I have no idea though. I rarely have it now and the doctors could not figure out why I did. I think it is a good idea to talk to the doctor about it. Is there anyone who could help you so you don't have to drive during those times? I wish I had more answers for you. Hope you feel better and get some answers. You have been through a lot and sound like a fighter

[gramE]

Could be a blood pressure issue. That is how my head feels when my BP spikes.

With a prayer for you,
pat

[Karlea60]

Thank you both for responding.
My husband called me this afternoon and said he would be coming home this evening, he works a lot out of town. I am so blessed!! So he will be taking me for my appointments. I will let you know what my PM doc tells me.
I had read that "when there is poor circulation to the brain stem (which is in most cases with RSDS patients.) Memory loss, dizziness, poor focusing of eye muscles, poor balance, and migraines result. These are the problems when the disease causes constriction of the vertebral arteries." These are all the things that I am experiencing.
Have any of you ever heard any of this, I haven't, as a matter of fact I have learned a lot from the different websites but not the Drs. Don't get me wrong I really like my Dr. and he has helped me a lot, but I have not learned a lot about the disease from him. But that is ok because I know there are so many different symptoms that each person has, it just wouldn't be feasible for him to go through them all. I am just so thankful that there is so much information out there.
Thank you guys again and again I am so glad to be here to have people to talk to.

[finz]

Welcome to NT Karlea.......Sorry that you had to go looking, but glad you found us !

I am so grateful for the opportunity to talk to others who understand what it's like to deal with the RSD beast.

I have severe headache problems because of occipital neuralgia that developed after my issues with RSD in the neck area. Sometimes, in frustration, I just want to laugh......at least when my head feels like it's in a vise, I'm not as aware of the burning in my neck/shoulder

Hang in there.....I hope you get some relief soon !

[Karlea60]

Thank you finz.
I went to see my PM doc today and ended up with his PA...oh well.
He did schedule a Lumbar Sympathetic Block for Monday. I am so thankful they got me in to quickly to have this done. I have had great success with these. As for the dizziness and headaches, he told me I would need to go to a neurologist to find out. I went to my Chiropractor today for a visit because he is certified in Neurology, he has linked it to the head injury and is doing some things with me. He has put me in some red lens glasses for 30 mins to 1 hour and this has helped me so very much. The brain is such an amazing thing!
And finz, I am so sorry that you have to go through this with your head. I think there is nothing I hate more than migraines or just headaches in general. I would like to crawl out of my body with these...and I would also like to unscrew my leg and set it off to the side when the RSD shows up!!

[gramE]

Dear Karlea60,
As I am unable to walk through the grocery because of my RSD, my husband does the shopping. On the list frequently is a reminder to check the markdown bin for any odd left or right lower legs. It can't be worse than the ones I have. He's learning to laugh at it. It is easier to deal with that me shouting at him to get someone's chain saw and just cut the damned thing off. A couple of nerve blocks have helped remove that line from my vocabulary.

have a quiet weekend
pat

[cindi1965]

Originally Posted by gramE

Could be a blood pressure issue. That is how my head feels when my BP spikes.

With a prayer for you,
pat

I agree...when my pain is uncontrollable my BP spikes and I know it right away. My GP has been very concerned about it and told me that if my BP goes up and down quickly due to pain, then I can have a stroke. I had to monitor my BP at home and call in my readings once a week. One day he called me back and put me on Topol because he was so afraid that I would have a stroke. It has worked out well and I have had VERY few days when it will spike high. I have also started using No Salt on my food and cooking, so that helps a lot.