Does anyone here have RSD in their face?
 

Hi there. I was just curious if there was anyone here that has RSD in their face? Did you have it first or did it spread to the face, neck, head area?

I have been getting the pains for about a week or two now and it is getting worse every day. The nerves to my teeth is CRAZY pain! Thank goodness it has only happened a few times but my face burns most of the day. My ears feel achy at times. Sometimes I think my eye is actually droopy because it feels numb all the way around it. I have wicked sinus pain and pressure on my forehead. The headaches/migranes are back. Sometimes I also get cold spots moving around my face. The back of my neck feels like a constant sunburn and feels like that under my chin and up my throat if I touch it.

The weirdest part is, the CRPS is in my lower left ankle/foot/leg. I am going to see a neurologist tomorrow. I hope he can shed some light on the situation. I really hate it being in my face. Sometimes I don't know what part of my body hurts worse and I have a lower tolerance for. I also have symptoms in my arms, chest, back (My bra drives me crazy by the end of the day, so much so that I think it has rubbed me raw but there isn't a mark), and both legs, as well as, my neck/head/face.

I would appreciate any thoughts and insight. Is it possible that it is not RSD but something else? Does this even sound like RSD?

TTL J

RSD in the face
 

Hi there,
I don't have RSD in my face but ever since I was diagnosed with RSD I have been getting problems with my teeth and I also get a sharp pain in my gums. Many of my teeth are chipped, I believe that the medications cause this to happen.
I find it hard to eat because of the problems, I have to eat on one side of my mouth. I don't get neck pain
Please speak to your PM doctor about this, he will be able to look in your mouth/neck to see what it is.
Take care
Love
Alison

Head
 

:( It is possible CRPS is spreading, I've had this to half my head once, but after taking Prednisolon for three weeks, it got better somehow?


Later I thought it spread to my legs, (My crps is in upper body, both sides) but after a neurologist visit, she was sure this was another neuropathy, still painfull , but it is called small fiber neuropathy, in my lower parts:confused:

So we all think this is spread, when something new happens , but it is important to allways check it out with a Dr. it could be something else, and hopefully something they can repair for once!

:hug:

I have RSD in my face... it didn't start there but has spread there. This was confirmed by more than one doctor. I have the same symptoms in my face that I have in the rest of my body.


Abbie
:(

Great Thread!!
 

I have wondered about this myself. My face has begun to do some strange things lately. Some times it feels sunburned, will look flushed and be painful to the touch. At other times, cool air touching it is painful.

I have chronic sinus pain, and headaches. The latest on that front is a sensation as if someone is poking ice pick into my eye! It's hard to determine of these symptoms are sinus infections I am experiencing or part of my TOS/RSD. I had a C.T. scan last week during a really bad episode and it came out clear for infections and abnormalities. So who knows...

I have been having trouble swallowing as well, and have been going to a speech pathologist to learn new techniques for swallowing as well as exercises to strengthen the muscles in my soft pallate area. It has helped some.

Ali, people with chronic facial pain are known to clench their teeth, (according to my dentist). She recommended a custom made night guard, and that I wear it anytime I am in pain, as we tend to clench subconsciously. Also, the meds. dry out our mouths and make us prone to decay and gum problems. It's really important to see a dentist regularly when you have issues like we do. There are sprays, toothpastes, and rinses for dry moth to help prevent decay we can use.

Geez, I'd gladly take prednisone if they thought that would do the trick! Wouldn't that be something!

Also, good to know about the small fiber neuropathy. Although, don't they treat the various neuropathy's about the same way?? I have a friend with peripheral neuropathy, and he's on pretty much the same med's I am.

Thanks for the thread, Kyzyl363, great question!

Cala

Hi
I also get crps symptoms single sided face and head. This also soon spreads to involve the upper single sided quadrant. However if I use mirror therapy as soon as the symptoms arrive I can keep the problem in the face area and relieve the pain and symptoms - symptoms being nerve firing, pain, hypersensitivity to touch or breeze etc.

I will describe what I do in the hopes it helps you with this.

I use a hinged double mirror make up mirror. I place it against my face so that I can see only one side of my face and the mirror image of my face. The mirrors form a right angle at the hinge. I place the mirror so that one mirror is directly in front of my face and the other is against my center of my mouth to the nose. I can then see in the mirrors what appears to be a complete face.

In my case the pain was eminating from my teeth area. This is why I placed the mirror against my lips. Whilst looking at the image of a whole face (but really 2 halves of the pain free side) I move my mouth and grind my teeth and poke my mouth with a finger. Because this is to my pain free side, it does not hurt. In the mirror I see a whole mouth not hurting. I repeat this several times a day and keep it up till pain resolves. ( a caution - last time I treated this I was getting rid of the pain but as soon as I stopped mirror therapy the pain returned. Turned out I had an abscess on my tooth. So if pain returns, look for a reason other than CRPS/RSD)

What this does is retrain the brain that everything is ok. I'll give you the link here to a picture of the mirror I use. It's on my blog. Under the post of the picture you'll see tags. If you click on the "mirror therapy" tag you'll pull up my other posts and picture about mirror therapy.

You might also like to click on my interview in my profile. This will give you an understand of who I am and why I have travelled this path. Suggest you also look at Dr Lorimer Moseley's interview on the "How to Cope with Pain" website.

http://crps-rsd-a-better-life.blogsp...or-i-used.html
crps/rsd a better life

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

Thanks everyone for your stories and comments. I don't have time to chat right now but will give you a quick update.

I saw a neurologist yesterday. Yes, he wants to run more tests. He is quite concerned about the symptoms I am having and says it seems to be a common thing for people with CRPS and a few other neuropathies to get similar things popping up or other neuropathies piggy backing on the CRPS trail. SO....Another MRI. This time not on my left ankle but my head and neck. I should have it this week some time.

I somehow don't feel like I was able to communicate all the things going on with me. He seems to think there may be plantar faceitus (however you spell it) on my left foot. I don't know about that though. I seem to recall something about looking into that once when things started but it doesn't explain or cover all the other symptoms I am having in that same foot/leg. So???Let him do his tests. Oh, a bone scan is suppose to be there somewhere as well. He wants to rule out MS and a couple of other things but didn't say....sure whatever. I just want to get somewhere with all of this....

Gotta run!
Have a Great Day! I get to go out into the snow...minor snow but the ground is still white! TTL J

You seem to be travelling down a similar path to the one I followed. I have had several tests over the years for MS. I was also told I had plantar fasciitis. Add to that, morton's neuroma, achilles tendonitis, bursitis, rotator cuff tendonitis, tennis elbow. I could not believe it. I am not saying I did not and probably still do have mechanical issues which caused those itises but with CRPS the pain just goes on and on. The usual treatments suc as physio and orthotics in my shoes did not take away the pain. In the end what helped me was mirror visual feedback. I now from time to time have a shoulder problem or a hip/back issues. I do the physio and I do mirror therapy.
I no longer have the great list of problems. I hope things get sorted for you soon.
jeisea
http://www.crps-rsd-a-better-life.blospot.com

sinus
 

You made me remember the icepick in the eyes, splinters or fire in my eye, itt was terrible.
Problem swallowing, I took a lot of tests, but nothing. But this has been gone for some years, I hope forever :(

But this part is in remmission, so don't give up hope:hug:

Yes the pain-meds for other types of neuropathy is the same, but I feel Neurontin helps my feets, and Tegretol my arms/hands? My neurologist said it possibly is so, for me, we are alle different.

Tiril

Hi there.. I am getting sharp needle jabs in the base of my toung like I swallowed glass.. it comes and goes.. last night was bad, also when I eat something tart my toung and jaw go into a clamping spasm nasty.. only lasts a bit but my sour candys are out of the question for now.

I get bursts of drilling pain in my head usualy on the left hand side above the ear and sometimes just behing the eye, my eyes tear up realy bad either that or they are dry like sandpaper.. I think what happens is I tear out (it just pours out of my eyes) then I get realy dry eyes till it does it again the next night.

I also noticed the trouble swallowing at times.. it's like I think "swallow" but the throat dosnt listen, there is a thick feeling there and I have to tilt my head a bit to facilitate the process alot.. I get burning patches everywhere including my face and prickly scalp.. I also get burning itch stabbies in the back of my head alot that drive me nuts when it's happening.

However I also have full body generalized spread so it may be that this is just part of the whole effect but I wory that my drilling brain stabs are mabie something else.. How are we to know because there is so much pain on an ongoing process that there isnt something else going on too, I feel like I do nothing but complain at the dr's.. guess thats what they are there for but I have never realy been sick much before this and I hate to complain so much. *sigh*
I am just so sick of this... this... setback thats the way I will look at it.. it's just a setback.. hm.

I hope that you are feeling better today.
hugs,
Sandra

i have it
 

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! :hug::grouphug::hug:

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

jeisa
 

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

head and face CRPS/RSD
 

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

Dental protocal
 

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

:hug:
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

Thinking Out Loud...
 

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!

How much prednisone did you take for three weeks? Was it tapered down?

I've had rsd in my jaw and gums and roots of my teeth. My ears and scalp get sores all the time and my lips swell up in the morning. I get burning on and off and pins and needles in my cheeks and lips. Its really weird. And now I have this darn ringing in my right ear. OMG. It's driving me CRAZY! I get bad headaches sometimes too. I've tried cutting back on my Advil so I struggle a little more with that, but the Advil has upset my stomach so much, I had no choice. I hope your rsd leaves your face alone soon. I will pray for you.