At least the sun is shining

It makes a welcome change to see some sunshine here in the UK. We've had a two year run of miserable weather with just a week or two of good weather now and again. A bit of sunshine makes you hopeful we may just get a proper Spring this year.

Counting the days to 25 March for my 1st appointment with the Rheumatology team at The Royal Free. Woke up Sunday morning with searing pain on left hand side of my jaw. Never had that before & thought I had slept funny but when I went to eat my breakfast I was shocked at how painful it was to try to eat. The pain did ease up a bit as I slowly munched my way through. Still have the painful jaw this morning and again when I eat it's very painful but otherwise it's bearable. Don't even think it's worth going to my doctor as I think they'll just say 'best left for the specialist' again. Still worried about my blister site and if I don't think it's improving by the end of this week I think I'll go to see the Nurse Practitioner at the surgery as they are familiar with wound care and can also prescribe if necessary. I don't necessarily want antibiotics but I would like to know how best to care for the wound and if it's 'normal'.

Still feel feverish like I am constantly on the edge of a cold but my temperature is fine & the dog-tired feeling goes without saying. Although I constantly have low pain in both hips, the other joint pain so far has travelled from my right elbow, to my right knee then into my right shoulder and now into my left jaw. At least it's only in one other place at a time! When I eat I also intermittently get intense shooting pains in both sides of jaw, almost as it it's in the saliva glands & I'm swallowing an awful lot and have 'clicking' on right side of throat. I talked to my dentist about that months ago and she had never come across anything like that and didn't seem bothered.

Until I get an 'official' diagnosis I have no idea if any or all of this is connected. I have a probable diagnosis of Mixed Connective Tissue Disease from my blood tests but of course the specialists will know more. I'm keen to find out so I can get on with getting on top of these bloody awful symptoms & get on with things rather than worry about what's going to happen next.

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  • If we are similar in any way, I find that my body is usually under attack with some infection or other when all goes haywire.

    When infections are at bay all else seems much improved.

    What I did find is that if you are apparently fighting infections but are also feeling cold that is pushing the limits a bit too far. You must stay warm.

    You need to keep the wound site clean but also keep warm as that will help rather than hinder circulation.

  • I have scleroderma and attend a dental hospital as I also have sjorgens syndrome. I am always told that if I have pain in my salivary glands I must contact them immediately as because of low levels of saliva I am much more likely to get an infection. Not a lot of help at the moment I know, I have not had to contact them yet, I suppose they would just give me antibiotics. I just hope it all gets sorted at the Royal Free.

  • Hiya I would suggest that you get your blisters swabbed by your practice nurse / dr, to then send off to your local hospital lab to see if you have any bacteria growing.... you can then have antibiotics specific to the infection, if you have any ! I would do this asap rather than waiting for the 25th !

    The swallowing and lock jaw as well as the tiredness sounds very typical to the symptoms that I used to have, and will re-present themselves if I have not been taking care of myself - by way of getting too tired and not keeping warm.

    I am on year 16 of this journey and wish you all the success with your return to good health, knowing that you have the best medical expert care in the world ( I sooooo love Prof Denton !!) to help you with this.

    The first 5 years are the most severe as the illness is at its most aggressive during this time, it then plateaus but will resurface if the symptoms are ignored !

    Scleroderma loves stress and worry so I stay away from these situations and my mantra for 2013 is 'I feel good and I want to feel good'. Try not to worry and be easy with yourself - if you have to spend the day in bed resting, no worries, as you need to get yourself prepared for your trip to the Royal Free !

    I would also suggest you diarise your symptoms so that you can take this with you to show Prof Denton and his team. Also have you checked out the rsa website ? raynauds.org.uk ? .....

    thinking of you, and looking forward to hearing how you get on on the 25th :)

  • Thanks for your comments and thoughts everyone. It's really very helpful to hear about others' experiences and symptoms though for a newbie it's still all very unnerving.

    I couldn't stop worrying about infection so I went back to the GP....again...They didn't think there was any infection in the jaw, my temperature is still fine and they just mentioned some grandly-named jaw joint thing & mused it may be connected to everything else that's happening or it may be because I'm stressed & grinding my teeth in my sleep!! But as the red inflamed blister site is still bothering me, I have some Fucidin cream to put on it with the advice to not dress or bandage the site. Now I think I have had so many things checked I really must stop worrying and get on with things until I get a specific diagnosis and management plan. Pause & take deep breath!

  • Hi tcogb,

    I agree with you about the weather and it was a very lovely day. As our weather is so unpredictable I just take it as it comes and enjoy the sunshine as much as possible. Just like people with Raynaud's and Scleroderma, Lupus and other like illnesses, no two days are the same. If it's not one thing it's another. It's all connected and all related. Our bodies are under constant attack from itself and It can be very distressing but try not to be too troubled as worrying too much only make things worse. I know it's hard not to worry when you're not well.

    If you are at all worried about anything please do not hesitate to go to see your doctor again. I am sure he/she won't mind even if you think you are being silly. Even if there's nothing much that can be done at this time I am sure you would be offered some reassurance. Don't suffer in silence. Even if you just give the surgery a quick call to have a chat with your nurse you'll feel much better and of course you have this forum which is invaluable.

    Regarding the grinding of teeth during sleep, some people who suffer chroncic pains often do this, however I experienced the same thing last year and found it was due to one of the medications I was taking for night cramps. I stopped taking said medication and the symptom went. Take care and keep the blisters as cleen as possible. Get plenty of rest, eat and drink well and just be good to yourself. The tests and hospital appointments will be many but are all necessary until a definite diagnosis is reached. Just go with the flow, keep your chin up, hope you feel better very soon. Let us know how your getting on.

    graygirl1

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