Hi guys,

I'm not sure if I posted about this before and can't seem to find any posts on it so thought I would repost.

I just wondered whether any of you have actually fainted because of your RSD?

On Monday, I was getting ready to go to school and got out of the bath tub and after about 5 minutes or so, I started feeling very dizzy. I went outside to try and get a bit of fresh air and my mum saw me and said that I looked really pale and told me to sit down. I was that dizzy that I didn't really know what was happening, I could hear my mum talk to me but couldn't move and it was too much of an effort to try and talk back to her.

I somehow managed to sit down and for a few seconds, everything went blank so I must have passed out for a little bit.

The dizziness lasted for about half an hour and I had to have lots of drinks to try and start feeling better. My mum thought that it was maybe caused by having the bath water too hot but it was pretty cool.

I have been feeling dizzy for the past few days now but have felt dizzy before all of this started to happen. I am OK some of the time and then I just get really dizzy and need to sit down.

I hate my PT session today but couldn't really mention it as the leading PT wasn't there. Her father-in-law passed away suddenly today. I feel really bad for her as she lost her mum and dad at Christmas and now this. I was working with another PT and the Neuro PT who was really nice. They tried putting my leg into the splint again and got me walking a few steps with it on - that hurt a lot!!!

They are still wanting to admit me into hospital to do the inpatient PT. I'm not sure when that will be but they are going to try and arrange it pretty quickly. They want me to try some intense PT before going down the route of Botox which makes a lot of sense to me. They also want to try and get my postural issues sorted as I seem to slouch a lot - the PTs said that my muscles in my back are really big compared to what they should be as I haven't used them that much for a while.

Any feedback on the dizziness and RSD would be greatly appreciated!

Thanks in advance!

Allison,
I wish so much that I could help, truly.
But, I confuse my dizziness with my tbi, and can't be sure...

Maybe a hospitalization would be good, where you could be 'observed'...

I wish you Only the Best!


Pete
Asb

I had the dizziness for the longest time. I had vertigo and that made it worse I still get dizzy at times but now it comes from the CFS. I get so tired that the fatigue and dizziness sats in.

As far as the posture thing. Same here, I went to PT today and Paul worked on my lower back, my thoracic spine and my neck. We talked about why my posture is bad. He said that I am guarded. I do guard myself. I'm always afraid people will try to hug me and I worry about them hurting my neck and my TOS. It does too. Most everyone around me knows not to hug to tight but some get carried away and then I start hurting more. He also said he thought I was guarded because of injuries in those areas.

He tried to work on my thoracic spine today and he said it was too tight, he didn't want to hurt me.

Hopefully if you go into the hospital they can help with your leg and posture.

Ada

Ali, fainting is a scary event. There are many reasons that people faint. I researched this for all of us. I hope it helps.
Dew

Fainting is a temporary loss of consciousness that is spontaneously recovered after only a brief period of time. People faint because of a lack of blood flow and decreased oxygen to the brain. The cause of fainting can be related to a number of conditions or situations, some involving the heart, many not. The medical term for fainting is syncope (SIN-ko-pee).

for more please go to
http://www.wisegeek.com/why-do-people-faint.htm

Hi Ali,

I wonder if your dizziness could be related to your recent increases in pain and stress due to the splinting of your leg? And the injury to your arm when you fell? You have been through so much lately! I know when my pain levels are high I get lightheaded and nauseus very easily. You also don't have any meds that help you with your pain, which must be incredibly hard.

Can you take some time off from school and your other responsibilities to rest and relax for a few days? I agree with the other posts that recommended the hospital visit.

I hope you feel better soon. Sandy

Hi Ali,
Sorry you had that scarry experience. I've had RSD 13 years,now full body. I passed out or fainted for the first time about4-5 years ago. My Neurologist explainted to me that RSD is an autonomical disorder, which means it affects the organs in the body that are involuntary, like the heart, blood pressure, circulation, lungs, kidneys etc. The sympathetic nervous system and parasympathetic nervous system control blood pressure . They both play a part keeping our blood pressure balanced. When we have RSD those systems don't work properly and they are up and down trying to keep our /.bodies balanced. Before RSD I had always normal balanced blood pressure. After RSD, I tended to have high blood pressure, thus needing high blood pressure meds. Taking two different high blood pressure meds , double dosed to keep my blood pressure normal. Then once in a while the parasympathetic nervous system the drops the blood pressure gets out of sync and it goes too far down. One morning, 4-5 years ago, I woke up and got up to use the restroom and started stumbling toward the bathroom, ran into the door, and bookcase, got to the bathroom and passed out. I thought I was out maybe 5 minutes, but when I woke up, I couldn't stand up, so crawled toward the door and banged on it. My husband, heard me and opened the door, I asked him to call 911. He was in shock, as I had been 'out' for an hour to an hour and half. Ambulance came, I kept going in and out. They couldn't get a pulse, tried the other arm and it was 60/40. The very low blood pressure caused me to pass out.So I spend 4 days in ICU . The Doctor says it is likely to happen again. I have a friend that it has happened 4 times. I bought a blood pressure kit and take it often. I can tell when it gets low. But it hasn't gotten that low again. But I notice, I get weak after a shower or bath and always lay down. I'm going to buy a plastic seat for the shower. My Dr. says to be careful about lowering my head, like washing hair to bending down looking for something while shopping. That can drop pressure in a hurry. But laying down after a shower or bath, really helps stabilize my pressure and get feeling stronger.
Stay hydrated, maybe drink glass of water before bath or shower. We get dehydrated from our meds, oh I forgot you don't take meds now. Well,, anyway, be sure and drink plenty of water. My daughter almost pasted out in the heat. she sat down, she could see her friend talking-her mouth moving, but couldn't hear any sound coming from her mouth. I think she was very very close to passing out. She had gotten dehydrated from the heat.
You stay well, how's school going? Say Hi to your Mom, your friend, loretta

ITA with Dew. Fainting can have many causes; have it checked out by a doctor, please.

A few months ago, I started having extreme dizzy spells while washing my hair. I wash my hair on a special chair in the bathroom sink. Every time I bent forward, after a while (with shampoo still half in my hair), I got so dizzy... It was more like vertigo, I fell to one side each time (the right) and felt like the rug was simultaneously being pulled from under me. Sometimes I even vomited. They have me on Betahistine for a month now, and last week I went to the ear, nose, throat specialist who did a bundle of tests that took an hour (hearing tests, balance tests - it was like being in a space chair!). Turns out that I have a thing called "Benign Paroxysmal Positional Vertigo". I have to do some exercises to help the debris sort itself out, and then I need to lessen on the Betahistine. I never blacked out, though!

Fainting is a whole other issue.

My point?

Have it checked out. Not everything is RSD or is due to RSD or stress or...

Thanks so much everyone for all of the information - I really appreciate it and am sorry to hear that so many of you suffer from dizziness also!!

I have still been feeling dizzy today. I went to the school centre this morning and went dizzy when standing but thankfully was able to sit straight back down before things got any worse.

I know that RSD can affect your blood pressure so i'm not sure if it's that. I think it might be worth getting a blood pressure moniter so that I can check it for myself. I did mention it to the PT's yesterday but they don't specialise in treating RSD as my leading PT wasn't there so they couldn't give me any answers really.

Pete - Thanks for responding. I'm going to get my mum to talk to my doctor about the fainting/dizziness if it persists!

Ada - Thanks for the info! I'm sorry to hear that you are dealing with all of that right now ((hugs))! My posture problems are from being Hypermobile my PT's think although they aren't sure if I have any other back issues underlying that - they said that we would have to try and get the RSD under control before they could tell for certain. I sit really slouched over and it's nightmare trying to sit upright. I've always slouched a lot but it's got a lot worse since I got RSD. I really hope that the PT can help you. Your PT's seem nice and as though they know what they are doing so hopefully they will come up with some ideas to help! Thinking about you!

Dew - Thank you for the link - I shall check it out! I hate the dizziness and really wish I could get it under control. It's especially worse as I never know when it's going to happen, I just go right dizzy and then seem to pass out after that. Thanks again!

Sandy - I was wondering whether the extra pain could be making things worse also as my pain as been bad the past few weeks ever since the arm flare. When I went to the inpatient PT program, they told me that a girl with RSD used to pass out when the pain got too much and it was 'normal' for her. I'll have to mention it to my dr and see what he says and see if I can get anything to control the pain. Thanks for replying!!

Lorretta - WOW, that sounds like such a scary experience when you collapsed!! SO sorry you had to go through that! I'm glad that it hasn't happened to you since and pray it never does!! Thank you so much for the info on RSD affecting the internal organs. I knew that it could do that much didn't know how bad it could be - nothing surprises me with RSD anymore really though!! It was really scary when I fainted and I seem to be going dizzy throughout the day also, especially when I go from sitting to standing etc.

Mainstream school has been a nightmare. All of my 'friends' have disappeared and could care less about me now. I tried going back not so long ago on a Friday and really hated it as I was just left on my own at break. My arm flared up after that also and my dr thinks that the stress didn't help so I have been told not to even try going back there anymore. I go to a school centre now which is really good. I have been going since September. Only about 10 children go which is nice as you get more one to one work and it is all in one room so you dont have to move hardly. The teachers are also understanding about my RSD and I have met some great friends there. I go on a Monday to Thursday at the moment but am hoping to try and go full time soon. It only lasts for 4 hours which is nice as I get very tired. I have also been accepted onto a course in Health and Social Care from September at college so that should be really good and I get lots of qualifications if I pass which will help towards getting a job in later life!!

Thanks again everyone for all of your input - I really appreciate it and will defintiely be sure to let you know what my doctor says and what we find out!

Take care everyone!

I have 2 teenagers - a boy and a girl. I have observed that girls your age can be so selfish and MEAN!! It must be REALLY hard not to take their actions personally. They are very "cliquey" and are so focused on themselves and keeping up with their crowd that they naturally become insensitive to those their age in need. It's not about you - it's about them and how hard they are trying to be accepted by each other. I'm so sorry, life is so NOT FAIR to girls like you when you are 14.

You are likely to be far better off in school centre where you are isolated with a smaller more select group, maybe with others who also have special needs who will naturally be more thoughtful and that I bet are a LOT smarter than your old "friends." Because you are smart, and funny, and have so many new friends like us on this board, and time is going to fly and you are going to find yourself in a different place very soon, where you will be studying stuff that you have dreamed of studying for a long time that you will be SO GOOD AT.

It's hard to believe (for ALL of us) but time really does heal most wounds. Hopefully your school has a counselor that you can talk to about your "friends" that let you down so thoughtlessly.

I sincerely hope that I made you feel a little better.

Take care, Sandy

Hi Ali,
I am not sure about fainting but I do have dizzy spells. Within the last several months, I had several during therapy and at home. I almost fell in the backyard once lol before I could grab on to something. It would have been a nasty fall since I just had back fusion surgery in Oct 2008. I am not sure if one can include the feeling of tiredness and fatigue with fainting. I know that I crash bad as if I had tons of coffee and am coming off the caffeine high. It's to the point where I do feel like I can pass out. Then it's followed by muscle and joint stiffness and tenderness. This would be something to follow up with my doctors... good point. I can go downhill and fast when my bouts of fatigue hit me. Normally what I try to do when I get dizzy is focus on a object and just stay there until it passes...kinda like spinning really fast but you focus on one thing to keep your concentration from falling. Oh and of course grab on to something if you can which for me is my cane. You also mentioned about being admitted into a hospital. Food for thought, one needs to be strongminded to be there. I had to be in a rehabilitation hospital after my surgery and it was no fun. If you do just stay focused on your objective which is therapy and to get out better than when you went in. Having a cell to text is also very helpful to keep in contact for support. That was my lifeline...