I'm in the Uk North of England and am going to see the Rheumie consultant in a few weeks, hate going as 'I look so well' on the outside but dying on the inside, my husband had to push me out of bed this am and buttons and zips are a thing of the past. Don't even get me started on the fatigue. Any how not seen a consultant for nearly 18 months as been seeing the specialist nurse to sort my medication out, aswell as Raynards for which I take Nidepress MR, I also have undiferential connective tissue disease for which I was taking Hydroxy taken off and interacting with my nerve pain killers and making me spaced out, I am now on Azathroprine an immino suppressant .
I have been making a list of my problems and symptoms and it's making me feel depressed and a hypocondriac ! My husband says I will be fine and I always feel like this before a consultants visit. I must be ill or I would not be on all this medication and my little body would not be twitching half the night.
Any tips?
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Swizzle14
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Which hospital group you going to? I'm at the Freeman. I've got Reynolds, scleroderma, sjogrens, mixed connective tissue disease and primary biliary cirossis..
My tip write everything down they say and most of all don't become your disease.. Manage the symptoms and try and forget about the fact that you have so much.. That's what I do X I've got hit with all of this in past year.. I'm 34 and trying for a family (that's tough with these complications). Try and focus on the positives and head up xx
Please ensure you see your rheumatologist at least every 6 months. Please stay positive as a positive mental attitude is key to this disease management. It is not about how you look it is about how you are. Please write down all your symptoms and talk to them. Be honest and be complete. They are there to help. Good luck and best wishes.
The reason it's been so long in seeing A they did not have one! I saw a locum in the past and I was seeing a specialist nurse inbetween. It's 6 mths since I last saw her.
It is the same for all of us, my friends always say "you are looking well" when I feel ghastly. It is like having run a marathon and can't move another inch. Keep your cool and don't let it get you down. Make a list of everything and hope for a sympathetic hearing which you deserve.
I would agree with all of the above. I get similar comments that I look so good. Write everything down so that you can remember to inform your consultant about your symptoms and be positive. I have Raynauds and Scleroderma with lung and heart involvement. Did a stint of chemotherapy last year and now on Azathioprine had a good 10 months of feeling really well symptoms just retuning. But take it one step at a time. Hope you have a productive meeting.
My mantra for years was, ' It's not that serious, anyway other people are far worse than me, so I'll just soldier on'....WRONG ! I agree with the consensus that says write everything down, the more information ( however trivial to you), will enable the Specialist to gain a better insight into your condition and make a more accurate assessment.
Since submitting myself to the truth, over the past 2 years I have felt better because I was finally able to tell the truth and face reality.
Good luck and best wishes....you will sort it out and feel better. Take care.
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Scleroderma Sufferer. 
Silver ring splints
A cold
This is summer??
