I don't get any pains in my mouth, thank goodness. My teeth are gone, sad to say, as I'm only 45. But the dentist said that the rsd definitely comtributed to their loss.

I do have trouble swallowing, though. It comes and goes. Sandel described it perfectly, "like the throat isn't listening".

My eyes are constantly dry now, there is no way I can wear contacts anymore. I use drops much more frequently than in my pre-rsd days.

Sandel, definitely get the head pains checked out!! This is not just another complaint, it is... or could be... very serious. And let us know how it goes, please.

Hi there... I do have RSD in my face it was only in the right and reccently speard to the left.. UGH.. One of the most horrible parts of RSD... Its connected to my teeth my Lymphnodes in the area... I cant eat... I use straws... If its hot or cold.. I let it sit for a half hour to make sure i can attempt to eat it with out horrible pain... I had a root canal done.. And the pain seems to run down that pain path alot... Which the dentist who knows a bit about RSD said that is compeletly normal... Pain runs down fimilar pain paths and since i once had pain there its not suprising that its running to that tooth... If that makes sense i hope...

I didnt know anyone with RSD in the face until reccently... I also wear a scarf so my own breath doesnt hurt my face and mouth.....

Hope that helped a little bit

Much love and hugs J!

don't know if anyone here has discussed this with their doc, but folks with face pain and rsd need to be aware of the possibility of trigeminal neuralgia.....the trigeminal nerve is the major nerve for your face......the good news is that TN is treatable.....i'm not sure how to differentiate between tn and facial rsd, but i know that if i start with face pain, the neuro will need to come up with that answer for me.....i won't let him shrug it off as rsd spread is there's any chance it oculd be treated.

please, all of u, talk to the doc about the idea of TN and more importantly, the idea of treating it!

I also have had throat problems. It was throat spasm, just like other muscle spasm only in the throat. It has caused food to become stuck and breathing stopped. The thing to do is stay clam and know that the spasm will pass and you will breathe again. It can be very disconcerting. My ENT specialist said reflux was irritating the throat and causing spasm. I cannot take meds for pain and get reflux from the stress of chronic pain.

I want to reassure you that this will stop if you control the symptoms. For me mirror therapy has been like a miracle. It stops the pain and with it the symptoms like hypersensitivity, sweating, nerve firing and things like muscle spasms. Guid4ed visual imagery, bilateral limb recognition and mirror visual imagery work very well to ease and stop the pain of CRPS. The thing is you retrain the brain. There is research and scientific understanding to back this up.
I know it works because 12 months ago I was a mess. I believe now I am on the road to beating this.

jeisea
http://www.crps-rsd-a-better-life.blogspot.com

Thank you for bringing this up... The spasms in your throat are very scary... I actually was rushed by ambulance because i had a spasm at the same time i was eating and the spasm caused the bread to go down the wrong tube... according to the doctor everything was so tight in there it had no where to go so i passed out...

When i am home alone because these spasms come on out of no where i eat light food or oat meal... and have learned how to give myself the himalic (SP) remover.... I was so scared..


Like she said do rememeber to breath through it and calmly... you will breath again... those spasms are scary just count slowly in your head... and you will soon be ok...


Pain free hugs and much love to all

Heya

I have major hypersensitivity in my face/ mouth though much worse in mouth/ eyes. My mouth burns and can't really handle hot or cold foods.. especially extremes. I have problems with my stomach etc so can't handle meat or dairy which is frustrating!! You describe the throat thing well - it's like it's not listening and won't respond even when you are trying to force yourself to swallow. I also aspirate alot, like WB says where you stop being able to breathe because you have gone into spasm and swallowed wrong and flooded your lungs - it's a frequent occurence when I'm eating and a nightmare to deal with - so I tend to have thick things. It feels like my throat is on fire and things I swallow just scream all the way down my throat. I hate the throat spasms - they are so horrible - they affect my chest and breathing as well which can be a nightmare!

Diet wise I don't eat meat or dairy. I find that soft food is considerably easier. I struggle with swallowing so eat soft mushed food much of the time and generally avoid rice/ crisps/ biscuits etc. I try and eat through the day instead of just meals because it takes me so long to eat that otherwise I end up giving up on food. Fruit is brilliant as are vegetables - these can be mashed and if you go for blandish baby food like ones I find they make me less sick. I can't really tolerate juice at the moment so go for smoothies with rice milk (can't tolerate soy at the moment) and things that are really really bland. I've discovered that cinnamon I can tolerate and reduces the hypo extremes so that's great. I drink lots of tea (just over room temp) especially Roobios/ Redbush which reduces inflamation and also reduces dry mouth. I tend to drink it with vanilla in the mornings and with cinnamon in the afternoon. I also drink green tea (high in anti-oxidants). Soy yoghurt is also good if it's room temp but I aspirate pretty easily on it on bad days. Oh and I also try to eat muesli as much as possible mixed in the with yoghurt or other fibre stuff.

Much love

Frogga xxxxxx

It's been a while since I've visited this thread. I get face and head symptoms. The nerve firing as suggested come from the trigeminal nerve area. Dental treatment triggers a flare as does migraine. On my blog I have much about safe dental treatment. The RSD Hope website has protocols to be followed when having dental work. I have a cream applied, then a needle and at the end of treatment another needle. This prevents a problem. It's called preemptive analgesia. Please gogle Professor Scott Reuben "preventing CRPS?RSD post dental or surgery".

I have successfully treated trigeminal and other one sided flare ups in the face with mirror therapy. I use a twin makeup mirror. There's a photo and description on my blog
http://crps-rsd-a-better-life.blogspot.com/
crps/rsd a better life

Go tot he left and click on the "dental" tag.

jeisea

Thats what I had done too except the topical before the needle.. I will request that next time thanks Jeisea.

So last weekend my head an face got so bad I realy thought I was having a stroke. I looked in the mirror and freaked when I noticed my right eyelid was actualy drooped right down, that side of my mouth too, my face felt like there sparklers under my skin (but faintly) skin felt waxy na little numish. went to ER and they did a CT scan and said it looked fine.. blood pressure was a tad high though and chest hurt like usual an the ECG came back fine. ER doc said probibly cluster headaches and home I go.

A few days later I get a call to come in and see my doc to discuss a test result, and I just now got back from that apointment.
Aparently my calcium is low, so now I will get more blood tests and see what they say.. haven't had time to look it up or anything..
My point in this other than to tell whats been going on with my head and that yes I got tested finaly.. is to say thanks Jeisea because I was comming to find this post (to put the head update in) *whew* lol


Sandra

You're welcome Sandra. Please if you have any questions or something you'd ;like help with put a comment on one of my blog posts and leave your email. I moderate all comments so I will email you but not publish your comment so it won't be made public. If you prefer not to do that then ask in a comment and I'll reply in the comment.

Hope things improve soon.
PS I think Hooshmand mentions calcium in one of the puzzels. You could google "Hooshmand calcium crps".
jeisea
http://www.crps-rsd-a-better-life.blogspot.com

Interesting!
I get burning lips, teeth that throb like I bit into something cold.

Now Osteoporosis is sometimes caused by lack of calcium in your bones, is that right?

I went for a MRI after Christmas and was told I have a bone spur and narrowing of my canal. (Deterioration it said) I really don't understand the MRI report, they use all medical terminology which is just plain confusing and scary. They use the word deterioration and another word that's not recognizable, makes a persons heart race a little...ya know?

Now I've had that bad sunburn feeling on the back of my neck for quite some time now...The Rheumatologist I spoke with the other day said it wasn't the spur, they're common and shouldn't hurt unless I press on it. He said the burning was the CRPS.

I can't help but to wonder if this is Osteoporosis starting...

Thoughts?

Love to all!