so frustrated and tired of it all
 

Ok so I go to the doctor today. I woke up a little yucky. Legs get really weak in the shower so I deal with like always. Then the cab comes to pick me up, I get in and feel you know not great but not bad. Ten minutes into the 40 minute trip I develop an awful headache, my ears start hurting and so do my teeth then I feel my temples start going hay wire. I even get a little nauseated. I get to the doctors office and back into the room. The nurse tells me my blood pressure is 151/96 wow! Super high for me. Then the doctor comes in and ask if there are any new developments, so I tell him all that has gone on with me and told him I feel all these things in both my legs and arms and even my face. He then tells me it does not spread. Why?
So I am extremely angry irritable and just wanna scream and cry. Why?
I am tired of my life being upside down. I thought I read that this crappy stuff will sometimes make your blood pressure high. Any one else have this?:( :mad: Help!

Yes. My blood pressure gets high sometimes since I've had rsd. Before rsd, it's always been very low. Twice this month after my last surgery I've had a fast heartbeat when I woke up in the morning. I logging the days so that I can tell my cardiologist when I see him. I am going to make an appt soon with him. It's on my list of what seems to be a million drs to call. RSD can cause irregular heartbeats sometimes as per my pm dr. If I were you, I would see a cardiologist and get a blood pressure monitor from drug store to check daily and then give him results. That's what my pm dr told me to do. I know it stinks to have rsd. It does turn your life upside down, and there are days that are really hard to deal with, but then there are days that are better. You just have to do the best you can with what you have. I hope it helps to know that you're not alone. Your dr is wrong. RSD can spread and does in about 70% of patients who have it. Check out RSD Hope and RSDSA and then show your dr who obviously has no clue what rsd is, and then find another dr, neurologist, cardiologist and pain management dr who know what rsd is and have them confirm it, so that they can treat your spread properly. After a while you don't need to get confirmation of rsd spread. You just know over time what rsd spread looks and feels like. My thoughts and prayers are with you. From your friend, Renee.

PS - I know it's hard, but try to stay as calm as you can. Stress only makes rsd flare up. The high blood pressure could be from rsd, but it could also be from stress. So if I were you, I would check with a cardiologist to make sure. Take care my friend.

Im sorry you're going through all the pain you're having. I wanted to tell you about high BP. I have normal BP when I'm at home but every time I go to the doctor it's high just like yours....150's over 90's. The doctor said everyone has high bp when they go to the doctor. Pain doesn't make it any better. Doctors even have a name for it.... White-coat syndrome. You should try to go to one of those stores that have the bp machines like Walmart.

Also, if you're doctor doesn't know that RSD can spread their not to bright. Go on any website and they can read about it. Geesh! that must be frustrating. Like you need any thing more to add to the mix if pain.

Sending good thoughts your way!
Heather

Thanks for the replies. I truly appreciate all your input. It helps to know that I am not the only one that thinks my Doctor is not educated on CRPS and maybe I should fire him. I say fire because I just felt like it and it was nice compared to what I was really thinking. Any way thanks.:)

Hey Phaedra! Sorry for the delay in my responding to your post, I haven't been on as much lately. Anyway, yes, RSD/CRPS can indeed make your blood pressure rise...so can pain. It happens to me.

Also, if your dr says that RSD/CRPS does not spread, well you need to find a new dr immediately. This guy is an idiot!! If it doesn't spread then how do you explain all the people just on this forum that have it in more than one spot?? Mine started in my face and is now not only there, it is in my hands, feet, shoulders, left arm, left leg, and some other spots.

Hope you are doing a little better now.
Nanc
:hug:

Sorry your dealing with this monster too !
 

Beside of suffering with rsd/crps,I understand many patients got too stress during dr app happens so many times to my husband by the time he see his dr blood pressure was sky rocking but the dr told him to keep a diary and check his block pressure several times a day and write it,so you might need to buy a bp machine costco or Sam club had nice ones with warranty and very accurate,also keeping track my help you to see what affected you bp keep the time,date and also documented what you had ate during those hours.by the way I'm the one with rsd not my husband I just used him as an example for bp records. with crps you need to know what causes the changes,be patient,takes time to get to the idea we have this condition for life ,will take a while for you to understand it ,is not easy,but we all the support you can get here or in any other forums you will learn a lot and most likely get less stress about it,just let your feelings out,is normal to cry,we all offer you a shoulder to cry,a hand to hold you,we can listen to you at any time let us know,if you prefer can also write private messages what ever makes you feel better,I hope soon you get better,blessings from Jesika
By the way always keep in mind some dr are not educate about rds ,I normally carried a print out from Wikipedia so they can learn as well instead of ignoring me hope that's help too. Also rsds.org offers a lot of info,updated,check and do as much research as possible,that's help with the process or learning and cope with the condition ,I had several treatments done already but remission still not yet ,but getting there hopefully soon,don't give up too soon.
Ps.we might not share same belief,please let me know whenever you feel uncomfortable,I will understand and will avoid mention anything that might get you uncomfortable ,thanks

if you have your doctors e-mail address send him this stating there are many other papers stating the same figure. http://www.thblack.com/links/RSD/RSD...t_01062010.pdf Also tell him there are papers stating that in 10% of us it goes full body, all 4 limbs, torso, neck, scalp, eyes, mouth and internal organs.
If he doesn't have the decency to apologise look for another doctor.

Since RSD set in my blood pressure went so high the doctors thought I was going to have a stroke. They called it stroking out. Scared them, me, and everyone else in the room.

So now I am on 3 different blood pressure meds to keep it under control. They said it is the vasoconstriction that was causing it to be high, and RSD has a nasty reputation for messing with the arteries. I would get a blood pressure cuff and keep track of it yourself for a while just to make sure.

When you are having trouble with the blood pressure, and then have some high pain days, mixing in some high stress.....well it might not bode well. Not trying to scare anyone, just telling what is going on with me.

Not something to ignore for sure.

I started having blood pressure issues about a year or so ago. They have me on 1 Med now. I anticipate that they will be changing things at my appointment next month.

I agree with monitoring it at home. On higher pain days mine will sky rocket.

I have VERY fluctuating blood pressure. It can be as low as 60/40 and will then go as high as 253/184 with an average of around 163/ 108. It can do this in just a matter of minutes. I've just got out of hospital after spending 3 days there for autonomic testing. I had a range of tests done including a tilt table test, blood work, exercise test, meal challenges etc... all of which were designed to see what happens to my blood pressure and pulse.

I was wondering, have you been diagnosed with Postural Orthostatic Tacharcadia Syndrome (POTS)? I was diagnosed with this 3 years ago. I used to faint up to 25 times a day. POTS causes fainting, black outs (or near black outs), dizziness, nausea, lack of concentration, headaches etc. Its really affected my life and my drs are now wondering if there might be something else going on. I know a lot of people with RSD have been diagnosed with POTS also (I have both conditions). It is also common if you are hypermobile, like I am so might be something worth looking into.

I'm yet to get the results of the autonomic tests back but hope they will help improve my quality of life.

I'd also suggest you get a 24 hour Blood Pressure monitor fitted if possible. Its important doctors know whether your blood pressure is high or low or if it fluctuates a lot like mine does.

Hopefully, it will "just" be high blood pressure for you. That is much more easier to control than fluctuating blood pressure. Obviously, pain can affect our BP as well.

Hope things improve and if you want to talk to someone who understands I'm here.

Alison:hug: