Feeling Low: I'm feeling so low at the... - Scleroderma & Ray...

Scleroderma & Raynaud's UK (SRUK)

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Feeling Low

TJme profile image
TJme
12 Replies

I'm feeling so low at the moment , I know its all part of the Raynauds , but the cold is just too much , just as I had hopes of the weather improving it's started snowing again , The nip in the air that everyone not suffering from Raynauds feels is like being driven into a huge freezer. I've got a problem with my lungs , it doesn't hurt to breath in but feels like someone is clenching and pulling my lung down ,I have a consistent pain on my left side ( not sure if thats liver or kidneys ) but too scared to see doc about either of these .

To add insult to injury my teeth have started to fall out ,I had a cap in the front ,yesterday was eating a banana sandwich (of all things )and felt it fall out ,I know my mouth has shrunk because a tooth I have on a plate no longer fits in my mouth ,all of my other teeth are either really loose or crumbling ...I feel like a wreck ! I look like a wreck ! made an emergency appointment with the dentist 3rd April !! ( that's an emergency !) I'm going to ask for them to refer me to the hospital to have the remaining teeth taken out apparently that is a 13 week wait too just for the initial consultation ...

Not sure how much more I can take before I give up.....Don't worry I'm not going to , just letting off steam ( there is a lot of it to let off ! ) Thanks for listening x

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TJme profile image
TJme
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12 Replies
Yorky profile image
Yorky

Don't give up, we all know how you feel. I could quite happily stay in bed from the beginning of Nov to the end of March, but of course I don't. I just wrap up as warm as possible and put on a brave face. Spring will soon be here and I'm starting to plan as many trips out as possible, along with all my heating aids of course, as I seem to have spent the last months inside. See if you can get a referral to a Dental Hospital NOW, don't wait until your app with the dentist in April.

TJme profile image
TJme

I tried this morning Yorkie ,I rang the nhs dental services and I've been told I have to wait to see a normal dentist for a referral to the hospital ,as far as they are concerned that is my only route ,I thought of speaking to my gp but theres a huge notice in the surgery WE DON'T TALK ABOUT DENTAL PROBLEMS ( helpful bunch ) , that's part of the reason I'm feeling so down .

Yorky profile image
Yorky in reply to TJme

Do you have a hospital consultant? I was actually referred by my dentist, but the consultant had offered to refer me as well. I have Scleroderma with Sjorgrens syndrome and had no trouble being referred. I was also seen within a few weeks and am now seen on a regular 6 months app.

TJme profile image
TJme

oops sorry must have been thinking of chocolate Yorky :0)

I'm sure some of the medications cause problems with the teeth.

Doctors dont seem to realise what an affect having apparently minor problems after everything else causes to the physche. If its an organ that is obviously seem as important. But in order to remain upbeat you can do without dental stuff as well.

I know there are cutbacks everywhere but it might be worth seeing if you can do a wait to be seen at a dental hospital. I know that was something that you could do at one point.

Coincidental or not, I have found that sometimes if there is something missing from the diet it can cause dental problems to seem worse.

zenabb profile image
zenabb

With scleroderma the gums recede. Mine have and my teeth are all wobly. Why do you want to have all your teeth taken out? It seems a bit much to me.

Bee346 profile image
Bee346

Hello TJme....PLEASE go to see your GP at the earliest opportunity OR ring the surgery and get a ring back. Explain the 'new' pain in your body, your teeth/gum problems and also your low mood..Your GP needs to know ALL symptoms....not just one or two. With all these symptoms no wonder you feel low but DO report it!. Request to see a specialist in Rheumy dept. Good luck and love to you.

sandycharlie profile image
sandycharlie

hi so sorry you are having so many problems but i am glad you come on here an talk, i find it really helps to say what you are thinking and know there is someone here that is going thro the same an sometime more than us....keep pushing the doctors take care xx

Monika profile image
Monika

So sorry you are having so many problems. I have endless problems with my teeth and was eventually referred by professor Denton, at the Royal Free, to the Eastman Dental Hospital who check on me, as Yorky said, every six months. So do see if your consultant can refer you. Thinking of you and praying that you can get some results very soon xxx

AliW profile image
AliW

Big hugs to you ... feeling low ? hardly surprising .... but remember you are not alone ...& do seek some advice form GP / rheumy etc it's so important to get all these people aware of your symtoms .. all of them indeed let them know how you are being affected then they can treat you .... I have had a terrible time recently - so low fed up can't take all this much more but somehow hang in there - friends pray & that really helps XXXX

Ah TJ - I hear ya !!

I had to have a tooth removed nearly 3 weeks ago due to the constant pain it had given me for the best part of 4 years thanks to my scleroderma ! I am 40 in June and lay in the dentist's chair in sadness... The gum is still so sore where it was removed from ! However I do feel blessed that this winter only took a tooth from me and not a finger or toe ! I would definitely get yourself classed as an emergency situation, as if you wait another few weeks, with a weakened immune system, you may get an infection, and then antibiotics to deal with .... tell the receptionists that you are susceptible to infections..

Also, have you had a look at some of the information leaflets which the rsa at raynauds.org.uk have available ? maybe you could give one to your GP / dentist ? to help them with their understanding of this condition.

I know all about some of the challenging days, which then turned into years, coping with this illness.... I sometimes have a little read of the Dont Quit poem which helps bring some coping reminders ! I will post it in the blog section - I hope you like it ! Keep warm :)

Lindalo1 profile image
Lindalo1

Along with the Raynaud's and Scleroderma, I also have Sjogren's Syndrome. This affects the mucous membranes such as the mouth, eyes, vagina, etc. It causes dryness and can cause shrinkage in those areas. I use artificial saliva and Biotene toothpaste/mouthwash for my mouth, moisturizing eye drops for my eyes and Estrace Cream for my vagina. I have also lost several teeth and the dentists have difficulty doing anything with my mouth due to the shrinkage. I have had difficulty eating certain things because I can no longer open my mouth wide enough. Fortunately, I've had no problems being seen by any doctors. That may because I'm in the states. It sounds like you may also need to get checked for Sjogren's. Good luck to you.

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