Julie, I am so sorry that you have been affected by this monster called RSD. It is always so sad to meet someone new to this situation. I have had chronic headaches for as long as I can remember. Sometimes they are really bad though I would never classify them as migraines. I take topomax. But I take it for my headaches & hopefully to work as a nerve block to help the RSD. I hope you find something to help you.
Hugs, Denny

Hi Julie and Welcome, I'm so sorry to hear you have RSD AND Migraines. They are both bad boys each in themselves. I've had RSD 12 years and Migraines about the last half of that. I fell backwards suddenly and hit my head on pavement ( the air hose at the gas station malfunctioned and suddenly pulled me backwards) Naturally they replaced it the next day before dawn. (smile) I have a ruptured disk in neck. and I also have trigeminal nerve disorder. I have bad headaches nearly every day and I seem to have less lately as I try to get out every day for a little bit. I was pretty much inside and in bed for over a year. I think the exercise and I also changed from 3200 mg of neurotin to 300 mg of lyrica. Also went off two double dosed anti-depressants to one low dose-cymbalta. Atitutde is so much better and family support too.
The B2 info sounded good, I'm going to research that and ask my Dr. about it.
You'll find lots of helpful friends here and encouragement. How long have you had RSD and when diagnosed? Hope it is within the time frame for blocks to possibly put it in remission? What kind of Dr. diagnosed you? and do you like him/her. Sadly, I was misdiagnosed like a lot of us, so missed the window of time to get the nerve blocks to put into remission.
This is also a good site for your friends and family to visit and learn, when they understand what is involved, they are so much more compassionate. We hope the best for you! Loretta

hi alison
i am brooke i am 10 years old and 2 months ago was my sports day my left knee gave way and after that my knee was hurting and i was getting pains like throbbing and striky pains so went to the hospital and i got told i had ripped ligaments so i got put on cruches and had a knee brace put on my knee,a week after that me knee started shaking and kicking out and i could not controll it,it was really getting me down and it carried on for ages a week later (2 weeks after my sports day)i went back to the hospital again and the whole hospital was gob smacked no one new what it was. i had an egc scan and a x ray on my chest also 3 blood tests and nothing showed up i was then put on diarcipan and stayed the night at the hospital.the next day i went home and was referd to great ormand street for the following week. the week i went to great ormand street i got told i had rsd and was then referd back to my local hospital for physio. my 1st time at physio i was told i had swelling around my knee. i do not have all the symtoms of rsd like i do not get burning pains but most of the rest.the shaking is still going on now it is now nearly 2 months and i also have 2 new symptoms cramping and passing out.in this past week i have been going really hot like a heat wave has hit me and then my head starts hurting i feel sick after that i pass out is any of the things i have match you please let me no and also please let me no if the things that happen matches what happens with you.how are you now?how long has it been?
thankyou brooke

Hi Brooke,
I am so very sorry you have RSD, especially at such a young age. I'm 61 and have had it 14 years-full body now. RSD is an autonomic disorder-which means it affects organs that are involuntary, like the heart, lungs, blood circulation, blood pressure, the sympathetic nervous system causes high blood pressure and the para sympathetic nervous system causes low blood pressure. I have passed out-pressure was60/40 I have a kit and keep track of my pressure almost dailey. When you wash your hair, don't keep your head down for too long. When bending down, be careful of not letting your head drop too long. Our body temperature is not regulated correctly. Thus we sweat a lot or we get ice cold. I get migraines also. He get excessively hot or cold because our sympathetic nervous system controls body temperature and it's out of control. We are never to use ice on our body. Outside temperature changes affect us-put us in a flare. Most of us feel good with epson salt bath, heating pad. My Dr. told me not to be out in the sun-use sun screen. Getting a sun burn would not be good for us.
Please write about anything or ask anything. You can do this on the forum or do a Private Message on the left hand side- it says PM message. Please know we are all here for you and encourage you to READ READ READ. Your Mom and Dad too. This is a very difficult thing to deal with-there is no cure, but remission is possible. I've had two remissions.
I was started seeing a psychiatrist 5 years ago and see him once a month. He has kept me mobile-out of a wheel chair, got me on the right meds and amounts. He also is a neurologist and pharmacologist. I'm grateful to have him. Sometimes it's difficult to find a knowledgeable Dr. Take care, loretta

corgichic,



Welcome to the forum. I am Dew, nice to meet you

Julie,

I suffered from Migraines for years before getting RSD. The only thing that brought relief was Maxalt. When I first began Topomax for the RSD (that was before it was used as migraine preventative) I did not have a migraine for over 6 months but they did come back. I was on 150 mg. a day for several years. I did go into remission with RSD and went off Topamax. About a year ago I decided to try Topamax again for migraine prevention because I was having 15-20 days a month of migraine rather than the normal 3-5. I am on 100 mg. a day and it has reduced the frequency dramatically back down to about 3 days a month. I do not like the side effects of Topamax, (for me memory/thinking isn't as sharp) but the migraines were more debilitating. You have to just keep looking for something that works for you though, everyone is so different. Hope you get relief.

Debbie

Hi Brooke. I almost missed your post. You may want to make a seperate post since this is so old. I am so sorry about your pain. Ali on here is also young so you are not alone though I know it feels like it. You don't have to have all the symptoms of rsd to have rsd. Do you think some of your reactions with the passing out could be from any meds you are on? What type of doc dx you with rsd? Did they send you to a pain specialist or just for pt? P
I was getting migraines which we thought was possibly from my eye condition that after 40 plus eye apts,11 eye specialist,neuros etc may be rsd. I am hoping the overall treatment for the rsd will help everything as I am having eye flare up pain but not the migraines

I've always had migraines too, since puberty... but if there is a correlation, then what about all those migraine sufferers who *never* develop RSD?

I have had migranes too since I was in my late 20's, but if I may answer your question with a question CRPSbe "if RSD were related to say broken bones than what about all those other folks with broken bones who *never* develope RSD?"

Once apon a time that was said too without an answer.

http://rsds.org/2/library/article_ar...Rosso_Nair.pdf

be well,
Sandra

Hi Brooke and welcome to neurotalk
I am so very sorry you are having RSD symptoms. I got RSD 14 years ago following surgery, but wasn't diagnosed for 4 years. I got frozen shoulder after the surgery and they sent me right into physical therapy thank goodness. It took a 100 treatments, but got full range of motion back. went into remission, then it moved to other shoulder-more therapy,remission. While I was having physical therapy, I did an hour of massage therapy on my own. The physical therapy was painful, so given pain med prior to therapy. About a year or so after my 2nd frozen shoulder I went into remission again. At least a year later, I was water skiing and felt a pull in my left hand. RSD used to be called Shoulder Hand Syndrome. My hand became paralyzed, flat as a board. Was misdiagnosed as having rheumatoid arthritis, even tho the texts were negative. Went to orthopedic sports injury group a couple states away and saw the hand Dr. He walked in the room and in less than a minute said RSD-Sent me to the hospital for a nuclear med test- That's like an x-ray with dye-it showed the bone degeneration-proof of RSD. Got started with physical therapy next day. Came back to Arizona =saw neurologist more tests-positive for RSD Saw a orthopedic hand specialist, confirmed, and started physical therapy and Desensitization-very very important.
It's funny after 100 physical therapy treatments and 100 massage treatments and had full range of motion back, we were moving to Arizona, my therapist said before we left, don't be surprised if it goes into the other shoulder. I thought that sounded so strange. After at least a year of remission, that's what happened- other shoulder.
RSD is an autonomic disorder, meaning it involves the involuntary internal organs. Our body temperature,(we sweat a lot) or can get ice cold. Our blood pressure can go high (sympathetic nervous system) or go LOW-the para sympathetic nervous system. --passing out. I've passed out once from low blood pressure 60/40 We have memory problems, forget words while we are speaking, anxiety/panic attacks , electric shocks, jerks, spasms are common. The Limbic part of our brain is involved-depression, decision making process is involved,
It's important to listen to your body, keep moving, swimming, water therapy is easier on the body. Temp should be 86 degrees. Streatching
is important, meditation, prayer, journaling, listening to music. walking, candles, epson salt bathes. It's important to try and stay in a calm frame of mind. Some people feel an anti-anxiety med is just as important as a pain med. Anti-depressants work on nerve pain. I take 120 mg of Cymbalta
I take vicodin for pain two blood pressure meds. Seroquel 300mg for sleep. Lorazepam for anti-anxiety.
I would like to encourage you to read as much as possible. Take care, and please keep in touch. It's important to have support. You can go to RSDSA and under Support you can punch that. There is a place you can put your zip code and it will give you the name and phone number of the community support group leader closest to where you live. They are very encouraging and you can learn a lot.
5 years ago when I was diagnosed generalized or full body, my neurologist suggested i see a psychiatrist. I'm glad I did. I still see him once a month. He actually manages my pain. He is a neurologist, pharmacologist and psychiatrist. He has helped me cope with the losses that come with RSD and have a good frame of mind and look for things to be grateful for.
I'm sorry again youo have this at such a young age. My heart goes out to you and your family. Please keep in touch. Your friend, loretta soft hugs