[faywray]

Hi
I am new to this sort of thing and some what down at the moment so forgive me if this is in the wrong place.
I have been ill for the past 6 years when the small joints in my feet and hands swelled up so bad overnight I could not move. I was diagnosed firstly with Raynauds then Scleroderma ( I really dont think I have the symtoms of Scleroderma) then mixed connective tissue disorder and inflamatory arthritis. I attend a lupus clinic and have a lupus specialist but dont ever seem to have the markers in my blood. the joints in my hands are so inflamed just now I look like i have mutant hands but the imflamation markers say they are fine!*?!
I am so tired and weary now of it all - I have been signed off sick for the past 4 weeks as I am so down and sore. I feel like a walking pharmacy. I inject MTX, on Plaxinal - cant spell that but its the malaria medicine, nephedipine, solpadol, tramadol,a new anti infam.,and have iloprost infusions ever month. Just had steriod injection in my butt three days ago but has only helped a bit - one hand ok, just the normal aching, the other still looks and feels like John Merrick. But still no one can tell me what is wrong.
I also have fibromyalga ( please excuse my spellings).
I get a rash on my neck not my face.
I am whinging now - sorry
I have read this board for a wee while and it has made me feel like I am not alone.
Cheers

 

[Katharine]

Hello there and :welcome:

I'm sorry you are going through such a rough time and have been for quite a while apparently.

Sometimes it can be very difficult to pinpoint exactly which auto-immune disease is at the root of your problems and sometimes (as in the case of MCTD) it can be several. Sometimes, after many years, one disease may come to the fore in bloodwork. Sometimes it may not. Also, we musn't forget that both UCTD and MCTD are very real diagnoses. They might be harder for us to follow but they are none the less real.

Quite a few people here have lupus with another overlap disease and also quite a few people have fibro.

A firm diagnosis of one thing or another is not necessarily the most important thing to have (although it can be very comforting for us). The most important thing is the treatment we get and it seems that you are being treated just as you would be with a firm diagnosis.

Of course, you need to be happy with your rheumatologist too. Do you have a good relationship with him/her? Can you talk easily about your concerns?

Don't worry about whinging We all need to whinge from time to time and it's far better to talk about it with people who can actually understand than to keep it all in.

hugs to you :hug:
Katharine

 

[lazylegs]

:wavey: Faywray,

I am happy the forum has already been of some help to you. Please feel free to post any questions you might have. The members are a very friendly bunch and are more than willing to help when they can.

Hopefully the steroid injection will kick in more fully in the next couple of days. Sometimes it takes a bit before it really starts having an effect.

Take care,
Lazylegs

 

[pollianna]

Hi faywray, am glad you found this site. It's kept me from going loopy. I can't spell the plaq , couldn't remember the name of it even though I read it over. Think it's part of the process.

You sound like you have suffered an awful lot. I hope that things improve soon and you feel better, keep posting and letting us know how you are

P xx

 

[onetay]

faywray,
Hi and welcome to the site. It sounds as if you have been having a time with your illness. I am so sorry that it seems to be getting the best of you at the moment, chin up it will get better. We have a chat room I hope to see you in there and you can ask questions and get advice with instant reply for help. I hope you feel better soon.

 

[iksyfaye]

Hi
Just wanted to say I hope things get better for you, too...I am from the States, so I am not sure if inflammatory arthritis is the same as Rheumatoid arthritis(RA)??...the joint swelling, pain, etc. sound so much like RA...I also am not too familiar with your medical system...I know here we (usually...) can see a specialist, and get a 2nd opinion...not always the case, with insurance like it is...that is a whole 'nother story...anyways, I hope you can get some firm answers soon, and some relief...
Take Care

 

[faywray]

Thank you all for your replies. Steriods seemed to have helped a bit. back off into hosp for my infusion on Thursday, will speak to the doc then. I never like to moan when I am there as I see other ladies who are far worse off than me - who am I to take time up when they need it so badly.

I dont see my prof anymore. I go into hospital Thursday/friday, he comes on tuesdays. I dont have outpatients anymore as I go into hospital every Maybe I should ask for an out patient appointment. The Prof is good though - a bit aloof but knows his stuff.
A lady said a diagnosis can be comforting - I agree - I am the type of person who needs to know things - I need a name - then I know what I am fighting - Its an idealist way but it helps. Maybe that will never be forthcoming but I got you guys now.
Thank you so much
fay

 

[x_claire_x]

Hello, you have every right to ask questions or have discussions with the Drs it is your body that is having all these problems and meds pumped into it so you have every right to good care, and a frank discussion about it! Please make sure you get any questions you need answered, answered! You definitely need to see the Rheumy.. Consultant, he is ultimately responsible for your care and you still have alot to ask him. If they don't hear from you they assume you are doing ok, so be a bit more pushy! Take notes of your symptoms and your worries, your questions and your thoughts... any photos of symptoms are a good tool too. Sometimes diagnosis is more elusive if you are too polite and retiring, I certainly felt more comfortable when I was diagnosed after a relatively short time of suffering..(5 mths), but that was because my body decided to sort it out and I ended up having a massive flare and in hospital!! They finally decided I had MCTD, couldn't explain to them how bad the pain was in consultations prior to that, I think I smiled
when I said it, being polite as I am....Be Assertive...all the best.
Claire X

 

[LolaLola]

Hello Fay, I hadn't welcomed you yet. So Sorry for that and a Belated Welcome.
You will enjoy being here and we are very glad to have you.
It can take some time and a bit of tweaking to get exactly the right mix of treatment,so don't despair.
x Lola

 

[Sage Hen]

Hi Fay,

Welcome to the site. I hope, you begin to feel better soon.

Best Wishes,
Sandy