• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
Sign in to follow this  
Followers 0
smac0719

Tongue Pain

13 posts in this topic

Happy New Years Eve everyone.

 

It has been some time since I've last posted. This year has been interesting for me. I am curious to see if anyone has experienced tongue pain that doesn't seem to be brought on by anything in particular. Recently, my tongue began to hurt, which made eating somewhat difficult. I didn't burn it and it also hurt to touch it with my finger. The pain eventually went away, but I found it to be quite disturbing and annoying. I searched previous posts and didn't see anything quite like what I'm describing.

 

Any feedback and/or remedies will be greatly appreciated.


I may have Scleroderma, but Scleroderma doesn't have me!

Share this post


Link to post
Share on other sites

Hi Smac

 

Sorry to hear you've been having tongue pain.

 

I've never actually experienced a similar tongue pain myself, although I have had mouth ulcers, but I'm not totally sure that it was to do with Scleroderma. I think that is the crux of the matter; very often Sclero can be a red herring, so to speak. Because I have Systemic Sclero, I tend to think that any health problems I suffer relate to that, whereas it could be to do with another cause.... totally unrelated.

 

Please bear in mind that I have no actual medical training, (although I love to tell my health professionals their job! ;) ) but I would suggest that you consult your doctor/dentist and explain the problem to them. There may be a simple explanation which would put your mind at rest.

 

Do let us know how you get on. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Smac,

 

Here is a copy of a post of mine:

Posted 22 May 2010 - 06:34 PM

 

I had problems with my mouth in November.I couldn't eat anything except soft things and soup. I went to my general practitioner thinking it was a sore throat. He gave me some medicine, I don't remember what. It didn't get better so I went back. He did cultures that came back negative. I went to my dentist but she said everything looked fine. They both suggested I see an ENT. My dentist recommended one so I called and it took me days to get through. An appointment was scheduled a week before I was going to FL. I thought about it, decided I didn't like how long it took me to get hold of his office and cancelled the appointment. It eventually got better on its own.

I lost 20 lbs. from November to January because I had trouble eating. I was actually reprimanded by my Nurse Practitioner, Nutritionist, and Scleroderma Specialist. I was awaiting a kidney transplant and they were concerned I wasn't eating properly. There are other posts on mouth sores but I did a search for them and didn't come up with anything.

 

I still have a problem with hard foods like crusty bread. If it doesn't clear up, take the suggestion of seeing an ENT if you can.

 

miocean


ISN Artist

Share this post


Link to post
Share on other sites

Have you been tested for Sjogren's? Something to consider if you experience dry eyes/mouth.

 

I get tongue pain from excessive mouth dryness during sleep. Can get painful and inflamed.

 

Good Luck,

 

Craig

Share this post


Link to post
Share on other sites

Hello Smac

 

Nice to hear from you again! I've not experienced tongue pain myself and I hope yours goes soon, on its own as Miocean's did.

 

Apart from the tongue pain how have you been?

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Smac,

 

I also have burning mouth and tongue. I've had this condition for 7 years and it comes and goes in intensity but is pretty much constant. I've tried a numbing mouth wash, and I've consulted my dentist, GP, gastrointerologist, and Rhuematologist with no luck in improving it. I also have recently tried taking an antidepressant to help with pain and symptoms and it actually made my burning mouth worse.

 

I sometimes find that the pain is unbearable and I have to find something to distract me. Other times it isn't noticeable unless I think about it. I haven't found any solution to it, and I think it is probably neuropathy in my tongue and mouth. I have Sjogren's, according to the eye doctor. It could be related to this. I get extremely dry mouth at night and at times during the day. I can't say the burning is related to dryness because it comes at times when my mouth seems fine with relation to dryness.

 

It is definitely a condition that can wear on a person. I've been told that dry mouth and this condition is considered more a nuisance and I should suck on hard candy. I can tell you it is definitely more than a nuisance to experience this first hand. At times it is so bad it is all I can do to push on through my day. I really have to work hard to not let it overwhelm me.

 

I hope you find some way to cope with the problem, and better yet, find something that is causing it. It could be thrush, reflux, neuropathy, dryness, and idopathic which means they don't have any cause they can find. My seems to be either idopathic or neuropathy.

 

If there could be a support group for this condition, I'm sure we would find that more people have it than we are aware of.

 

I wish you well in the New Year.

 

Mando.

Share this post


Link to post
Share on other sites

Hello Mando

 

I've been told that dry mouth and this condition is considered more a nuisance...

 

Ranks with the most unhelpful things ever said. I don't even have this problem but you can bet that it's one I don't want and didn't want when I first began finding out about sclero and friends. I should think adding in dry eyes with the dry mouth would just about be unbearable. A few years ago my sister had dry eyes one entire summer and she said it was awful and was unable to find any relief until it went as mysteriously as it came.

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Smac,

 

I'm quite sure I bit my tongue very shortly after I had surgery a few weeks ago. It really hurt a lot, but only on one side of the tongue, which my few remaining teeth would have had access to. I figured it was just too coincidental that the teeth could neatly reach that spot, if I stuck my tongue out a bit. In the past I've had tongue pain due to thrush, but that is accompanied by a thick white film on the tongue, and I get painful tongue (the whole tongue) caused by dryness from Sjogren's, as well as mouth sores and tongue sores. So I narrowed this down to most probably a tongue bite, which I most likely achieved during sleep since I don't recall doing it while awake. Maybe I didn't just bite, but rather chewed away on it awhile, helped along by some surgical grogginess! Who knows?

 

But from that adventure, I can say that if it is just in one spot, and no sore or white film develops there, and you don't know what caused it, and it cleared up on its own in a few weeks, you could have bit it while sleeping....like I more than likely did.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

Share this post


Link to post
Share on other sites

Hi smac,

 

I am on board with the rest of "our family". I (also) have Sjogrens and it also is a culprit :o

 

While I was on Methotrexate, I suffered greatly, with (surface) tongue pain. However, once I got on Folic Acid, the pain subsided, thankfully.

 

Like Shelley, I also had bouts with thrush and the white coated tongue would definitely be the clue if that were the problem.

 

At any rate, I hope that you are able to get it cleared up and nip it in the bud should it ever happen again, as we do know it can be quite painful and cause problems.


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi

 

I don't have scleroderma but Mando I did have what was called BMS (Burning Mouth syndrome). When reading your post all the memories of that terrible time came back. I had it for years and was forever sucking on peppermints.

 

I tried doctors, dentists, ENT specialists all to no avail. At the time I was unaware that this condition has a name and was recognised. It got to the stage that I thought I was going crazy. Around this time I spend some time in hospital (six weeks) due to a mental "breakdown". I am sure the burning mouth contributed, along with many other problems I was experiencing.

 

Here is the good part. :P I was sent to a Pain Specialist by my General Practitioner. After quite a long consultation he put me on a drug for epilepsy. It was a miracle. My life got back to normal and I hadn't felt so good in years. I tried stopping this medication a few months ago, and boy did it remind me of how bad I was. Quickly got my prescription filled out again! The Pain Specialist thought it was due to nerve endings and seems that he was right.

 

I did read about Burning Mouth sydrome on the internet some time later and it really did fit all my symptoms.

 

I hope this can help you too as I know how stressful it is.

 

Warm regards,

Robyn

Share this post


Link to post
Share on other sites

Robyn,

 

Yes, I have Burning Mouth Syndrome, (BMS) and I have yet to find any relief from it. Would you be able to send a private message with the name of the medicine you are taking? It is quite painful most of the time. It can really wear on a person.

 

Totally unrelated, yesterday I had an aura migraine for the first time in a year or two. It was terrible. I right away took medicine and warded off the worst of it. I can't take many forms of pain medication because of sensitivity, and I can't take migraine medication because of an irregular heart beat.

 

It is wonderful that your BMS stopped. The antidepressant was suppose to make it easier for me to deal with my issues, but it sure made the burning worse and that I couldn't take. Someone without this pain wouldn't understand quite as well as you do.

 

Mando.

Share this post


Link to post
Share on other sites

Hi there,

 

I have a constantly sore tongue that is attributed to Sjogren's as well as pernicious anemia - I have both. The anemia was diagnosed via an upper endoscopy I had last month.

 

Lori

Share this post


Link to post
Share on other sites

I have had problems with ulcers in my mouth, and I suffer from Sjogren's so I get the burning in my throat at night all the time. One thing I was told by a doctor when I lived in America is to rinse your mouth with a combination of Milk of Magnesia and Liquid Benedryl (as mentioned on the Mayo Clinic site.) The Milk of Magnesia numbs and the Benedryl helps with any allergies (but follow the Mayo instructions and be sure to spit it out, not swallow!).

 

This helped a great deal with the ulcers, I'm not sure if there is an equivalent to Milk of Magnesia in the UK; I am a transplanted American and have been here for 9 years now and am still learning what things are called here! I have found as well that rinsing your mouth with cordodyl helps to numb the pain for a while. At least if you could relieve the pain for awhile that might help.

 

Good luck and hope it gets a lot better soon.

 

Jean

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
Sign in to follow this  
Followers 0