[Blodwyn]

I am still in a quandry about going in to be checked out...and I was wondering if anyone here has mouth sores as a symptom? I seem to be getting these quite a bit lately, but they are sore, and I think that I read that lupus related mouth sores are painless? Also, has anyone had luck with acupuncture? I had it done a couple of years ago and it really helped with the arm/joint pain. But it's come back, and I have an appt. with another acupuncturist in April, but I am worried about the cost of it...any advice? :sad:

 

[LoopyLoo]

Hi Blodwyn,

I have the most awful mouth sores at the moment and they are quite painful. For some they aren't as bothersome. I have to say that mine may be not be related to lupus but to the antimalarial medication I'm taking. It's something I will never know. I use a mouthwash, steroid paste and steroid tablets if it gets really bad.

I know you are not diagnosed at the moment, when are you due to go back to the doctor? The best advice I got from this site was to keep a diary and also take photographs of any rashes that you may have. It helps to prompt you during appointments.

I can give you my experience of acupuncture. I was referred last spring by my rheumatologist to the rehabilatation unit within my local hospital. I've been treated very successfully there by a trained rheumatology physiotherapist.

It really helps me with pain relief but if I haven't been in a while it can make my symptoms worse for a couple of days. A good therapist will advise you of this. I'm not sure if you live in the UK but if you do then you can be referred under the NHS.

I hope that is some help to you.

Hugz,

Pam xxx

 

[Lily]

Hi Blodwyn,

Some people report their mouth ulcers to be sore. Mine don't bother me too much but if I eat anything spicy or too hot they hurt. Everyone is slightly different in how they experience things.

love
Lily

 

[Clare.T]

Hello Blodwyn

Mouth sores are on the criteria list. Using the lists and descriptions of lupus works can work both ways. I mean you can read something and find your symptom doesn't quite fit so you decide yours can't be lupus related. There are a number of sites that say discoid and subacute skin problems do not itch. Of course these are written by doctors who have seen maybe 1000's of patients so there must be some credible basis for that statement, but all I can say is that I haven't met anybody whose discoid or subacute doesn't itch. So the risk of not diagnosing yourself, or not getting diagnosed, because of what you read is as great as that of diagnosing yourself with lupus when in fact you don't have it.

I think you should see another rheumy if at all possible because the reasons you were given for your not having lupus were idiotic,(no skin problems, no anti Sm ). Maybe you don't quite have diagnosable lupus or maybe you don't have lupus at all but you do deserve a sensible explanation.
Some symptoms will need separate treatment even when the disease is being treated but it is important to treat the disease itself as soon as it is apparent.

Good Luck
Clare

 

[Salopsally]

I have sore mouth always. I have SLE. Had really bad ulcers etc when I was in a flare but always got sore gums and tongue.
The lower I cut down the prednisilone the worse it gets but its ok could be worse. Think it is just one of the lesser evils of this disease.
Sal x

 

[Luscinda]

Hi all,

I also suffer from mouth sores (and nose sores too, very painful!). I haven't tried accupuncture. I use Bonjela, a gum and teething gel for babies , and it works well. I does take the pain away.

Big hug,

Luscinda

 

[halfpintfl]

Hi There, I am dx and I have mouth ulcers. Mine are very,very, sore especially my gums. I have dentures (too much info.) and at the moment they are loose, so I use a paste from the drug store, and basicly eat soft food. It is like, if I don't move my mouth, it wont hurt. Good luck on yours.

 

[Blodwyn]

Hi everyone,

Thank you so much. I have learned a lot about this in the last few days...and made a doctor's appointment for April 4. I'm scared! I think I managed to bury this for awhile and facing it is a little scary. I was in so much arm pain the other night that I was awake for hours...what a thing this is. Thank you all so much for your advice and support. It's so helpful to know that others have been through this and can offer advice, etc. Thank you! I also didn't know about the itchy rash. I have that on my arms...have clawed my skin raw in places. OOF. Well, in about 2 weeks I will have some answers, perhaps, or at least some beginnings of answers. Thank you again...Elizabeth