[x_claire_x]

Hello, just thought I would say Hi, first time I have ever joined a forum; I had major gynae surgery last year 07 and thought I might be able to have a few years pain free... only to start suffering joint/muscle pains literally overnight last July 08. My hands were all curled up and struggled to get out of bed, pain so bad I couldn't wash my hair some mornings without a weep, if at all, my bloods only slightly affected, auto immune antibodies etc. Developed Raynauds in the autumn, getting exhausted having no pain relief from anti- inflammatories. Finally a flare in Nov, severely swollen joints, red flush upper body, felt poorly, difficulty breathing. My inflammatory blood markers went through the roof (CRP 155). Think I had severe allergy/infection trigger. After three days my body kicked in and started getting better, facial rash/ mouth ulcers etc continued for a bit longer... but at least I got a diagnosis and medication which I am trying out!! Found out I was photosensitive at Christmas. My Rheumatologist was on the ball, which I am truly grateful for as I know from reading through some of you have been through a terrible time getting believed etc. I was nursing not that long ago and can't believe how little I knew about Lupus and related conditions, I had heard of it but knew so little....my husband has urged me to join this forum, he has been very worried about me and very supportive, which again I am grateful for. I am having difficulty accepting this disease as I am a busy and intolerant of myself being ill person!!! Still guess that will come in time... it is good to be amongst people who understand....I will be in touch again to find out even more, until then.... take care.x

 

[LolaLola]

Hello Claire, I am glad you found your way here.
You will soon learn a lot. Do go easy on yourself though, Lupus is NOT something you can push yourself through. None of us here are the sort who give up, but you do need to come to an acceptance of what you can and can't do. Hopefully with medications things will improve for you.
x Lola

 

[x_claire_x]

thanks lola

Thanks for that, I will have to learn to accept that I will have good days and bad ones, I have been busy trying all sorts of things, homeopathy, reflexology, reiki on top of the meds!! Trouble is I won't know what is working as doing them all at once in my typical style!!!!

until the next time.. take care.x

 

[Gerri54]

Hello Claire, and welcome

Your doctor is definitely on the ball. There are many like myself who needs a doctor like your doctor.

I wish mine was on the ball as yours. I have your symptoms plus more. I much internal organ problems, plus the rashes, and the sun sensitivity.

I have just started seeing a naturalpath, and hoping he has answers for me. Just diagnosed with Raynaulds, but have a number of autoimmune diseases going on I am HLA B27 + (Ankylosing spondylitis), Vitiligo, and my list seems to be growing.

Hugs

Gerri

 

[x_claire_x]

good luck with the naturalpath

Hi Gerri, I hope you get some relief from the naturalpath, sounds like you have a lot on your plate. Take care and I will let you know if any of the alternative things I am trying help, Good luck. x

 

[Gerri54]

Claire, any information on your alternative therapy that helps, I will be very much interested hearing about.

Hugs

Gerri

PS: So many allergies have no choice of seeking help elsewhere. My family doctor gives me my blood pressure med., and ativan to help me sleep at night. Over two years with this doctor, he said he would have answers for me, and he just keeps adding more health issues that I can add to my Medical alert Card.

 

[Katharine]

Hello again Claire,

This is indeed a wonderful place to come for that implicit understanding which can only come from experiencing something yourself.

It's good that you have a good rheumy. One of the things that you need to learn with lupus is to be kind to yourself, as Lola said, you cannot push through lupus and you would actually make things worse by doing that. You need to learn to pace yourself and remove as much stress as posible from daily life. Another thing you will have to be patient with is your treatment. Some meds (plaquenil in particular) take a long time to kick in fully but are very much worth waiting for and extremely important as they modify the disease, reducing the severity and frequency of flares.

Katharine

 

[kim5010]

Welcome to the forum Claire! I am also a MCTD diagnosis, finally this past summer after years of stuff going on. I wish you luck with your new meds and therapies. Just take your time and be gentle with yourself, physically AND emotionally. I am a retired military nurse and I have had a heck of a time getting used to slowing down and focusing on my own health now. Some days are tolerable and some days just aren't ... but we all go on. I am having a very bad flare right now and my MTX is maxed out and just not working, so we need to go on to the next med.

You sound like a very positive person ... keep positive and by all means keep that good doctor you found, they are hard to come by sometimes.

Take care


Kim

 

[x_claire_x]

good to know you are there

Hello Katharine and Kim, thanks for your replies and support. It is so helpful knowing that others are out there. I am quite positive most of the time but found the time when I was in so much pain and no answers very distressing, much prefer dealing with what I know... my heart goes out to those that struggled with incompetent doctors etc telling them they were imagining things etc when you are feeling so tired and in pain it would be easy to believe them. It seems a long journey from here, but know I am lucky to have a quick diagnosis (relatively) and meds early, just got myself to deal with now!! Kim hope your flare settles very soon and they get you on a better medication that is effective, keep plodding through this bit.. feels you will never be normal again when you are in it. Lots of rest and let me know how you go.... take care x

 

[cad]

Hi Claire,
I have MCTD too, I was officially diagnosed in June ish last year.

Welcome to the site. Sorry about your diagnosis but glad that you found a great place like this, you will find it a great place to chat, and get really good advice and info.

I have really learnt alot about these dseases and related conditions since joining here and there are some really great people who visit and run the site.


Hope things go well for you with your treatment

Take Care


Cassie

 

[pukekos]

Hi Claire,
I have had a MCTD dx for 6 years now. My 'mix' includes raynauds, scleroderma, myostis and RA. I also had a great doc who was on the ball asap. Mine seemd to come on like a light switch as well but in hind sight it was probably resposible for a few things over the years.

I hear your frustration, fear and wonder of what the future holds. Of course we are all different and all our futures will play out in different ways but if I may I will share how my future played out from dx to now. The first two years were filled with fear, anger, medication woes and at times the thoughts that this was going to kill me or at best rob me of who I was. I was determined that I would just suck it up and plow through, I had people telling me I did this to myself by being driven, bottling up emotion, eating the wrong foods - you name it - it was my fault- for awhile I beleived them. Slowly the medications started to work but the biggest thing that happened was this site and the advice I got here. The one that sticks in my mind the most is 'you are not lazy and you are not crazy'. From the warmth, wisedom and support I recieved here I started to cut myself some slack. I began to explore what i COULD do with the new limitations on my body. I wasn't overly thrilled with the new me but I could see redeeming features

I was lucky to have a supportive husband and family, dogs and cats that cuddled me and a great sicologist trhought Arthritis society that let me vent, cry, screamand just get plain mad. All of which she told me were completly normal and needed. I also was able not to work and moved to a warmer climate - cold kills me.

In my case the years that followed seemed like a roller coaster - I would get a bit better , then have a flare, coast for awhile, get better, flare, coast - up and down up and down. Pain, brain fog, depression, loss of strength, less mobility, sadness ...

I am one of the lucky ones though,even as I went up and down I was slowly improving as the months (years) went by. I slowly reduced medications, could do more things (though learned that rushing things makes it worse) and saw small improvements.

What my life looks like now is I still don't work outside the home (I run a doggy daycare because dogs love to nap ), 3-4 days a week I sleep in the afternoon, if I catch a cold it will take weeks to get better, if I have an afternoon in the garden I am done for a couple of days, large crowds and loud noise still bother me, I see physios, massage therapists, have blood test at nauseium, am on first name basis with my GP and sometimes long for the go-getter, energizer bunny I used to be BUT I am off steriods and will try coming off methotrexate in April. Most of the time I like the new me, have learned to live with the limitations and try everyday to be thankful I live in a country that gives me access to medical care.

Looking back I wouldn't have waited so long to listen to my body, seeked help for the frustration sooner and cut myself some slack sooner. I believe we need to go through a grieving process because this dx is life changing - it will never be the same again. No matter what course our body takes we will never be the same again. Most days I am okay with that - some days I'm not.

Whatever way it plays out for you kow that we are here for you. Email me anytime if I can answer any questions, need a venting place or just wanna say hi.

hugs
Pukeko (Lisa)

 

[x_claire_x]

recognise those feelings!

Thank you Cad for your kind welcome and Lisa, wow I recognise those feelings, the fear of the future is definitely there, the thought of being a burden on my family is unbearable. Also that I must have wished this illness onto myself due to lack of care and consideration for myself; I do definitely cope with things as a rule but am a bit out of my depth with this one, I do better, looking after others and their various problems than my own! I get stressed just thinking about trying not to be stressed!!! I find it hard not being me.... not sure where I have gone.
I admire your honesty and am glad you are coming off some of your drugs, good luck with the methotrexate; I am hoping the plaquenil will work as I am coming off prednisolone after a photosensitive flare in December; I am down to 7.5mgs and also taking the plaquenil 2 a day. amitriptyline at night 10mgs a BP tab, thyroxine and a load of omega oils etc homeopathic stuff.. also trying various treatments such as reiki... might even train in it, find it fascinating stuff. Not sure what the future will bring but then who is? I have been around long enough to know that plans are often disrupted by life;
and had them disrupted many times. I will no doubt have loads of questions etc and of course plenty of worries, I will definitely ask for answers from this site and from you as you and fellow sufferers have already been on the path I am following. Thank you for your input, it is invaluable.
X claire