Hi everyone, I’m new here, I’ve just been diagnosed with “undifferentiated connective tissue disorder” I’m in denial atm as I don’t really know how to feel! I feel so lost, everyone around me doesn’t see an issue but I feel the pain!
New here! : Hi everyone, I’m new here, I’ve just... - LUPUS UK
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ZA31
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Hi there and welcome. I have overlap CTD - two or more full blown CTDs but not clear which is predominant yet. It is quite a difficult thing to process because not many people in everyday life have even heard of connective tissue disease let alone the various sub groups eg UCTD or MCTD or Overlap CTD so it’s easy to feel isolated and opt for a state of denial. I’m often in denial still after ten years of this! Anyway you’ve come to the right place and will get lots of support from people here I’m sure so this is a very good place to start with the acceptance process. X
ZA31 in reply to
oh wow! It’s nice to know there are other people feeling what I’m feeling! Thank you for that! Tbh I had never heard of it before I was diagnosed and your right when I tell people what I have it is just shrugged off because they haven’t heard of it, therefore it must be nothing 😞
in reply to ZA31
I do really understand. I was initially diagnosed with RA, then rediagnosed years on with primary Sjögren’s, then Lupus was suspected and now systemic sclerosis is the one no-one can fully get their heads around. RA and Lupus were easier to tell people, Sjögren’s is hopeless because of the pronunciation and very few people have heard of Scleroderma/ systemic sclerosis - which is the one that’s likely to be evolving/ progressing for me. Gastroparesis is my latest diagnosis that no one understands at all!
Sometimes it’s easier just to say it’s like… (name of one disease eg Lupus). Lately if people even ask I just say “it means turning dry, hard and mean!” - depending on who asks of course! X
ZA31 in reply to
so my rheumatologist has said I have abit of everything, abit of Sjögren’s and lupus. After reading abit on the internet I can see with these auto immune conditions you end up always getting more conditions, like you suggested it keeps getting further diagnosed. Would you say your symptoms are controlled at all? I want to see light at the end of the tunnel, it’s only been a few weeks for me and I’m genuinely breaking down, I want to know whether things will get better?
in reply to ZA31
Re improvements: Ah well that’s so different for everyone I guess. A lot depends on whether your rheumatologist has put you on treatments or not and if so how you tolerate them and how well managed they are by these.
Personally I’d say that i was treated quite aggressively for RA ten years ago and it did really help the RA - to the extent that within a few years the severe onset of bilateral joint pain had gone. That was with methotrexate and Hydroxichloraquine. Unfortunately my body didn’t tolerate either too well so the rheumatologist then tried another, Azathioprine, and that one hospitalised me.
So then I had a few years off and I guess that’s when everything became more systemic and related to nerves, guts and circulation. Unfortunately I was then shrugged off as just having seronegative Sjögren’s and was taken off my treatment, Mycophenolate and almost discharged.
Now I’m back under a rheumatologist in same hospital but different clinic and am on the maximum dose of Mycophenolate. I also have recently shown a strongly positive antibody for systemic sclerosis but opinion divides on whether this is actually my main disease because it’s not showing classically either - but it would explain the severity of my gut issues and Sjögren’s could explain the embedded nature of my bladder problems. So I’d say joints and pain are less of an issue now and that’s really good. But it’s thought that my overlap is more Sjögren’s related than systemic sclerosis for now. The treatments I’m on cover both.
Raynaud’s and another rare neuro vascular issue are better controlled since I started 3 monthly infusions of a treatment called Iloprost. Chest pain and cough much better since restarting Mycophenolate last year.
Guts and recurring UTIs and fatigue and chronic pain (not joints - more nerve pain) less good. Skin good apart from aesthetically annoying red spots under the skin but they don’t itch just look like red freckles - associated with limited systemic sclerosis I think.
I think acceptance gets easier for us when people around us become those who help us accept our limitations. Some friends will go but other new ones with similar restrictions arrive.
No one should be dismissive of any person with an autoimmune disease but it’s hard to make healthy folk or those who have conditions that either kill or are cured, aware of how it is to live with chronic illness. Lately I’ve just given up talking about it but people in my life are more aware of it because I’ve lost so much weight (a good thing for me!) and been shielding.
You need time to re-evaluate and come to terms. But otherwise, with good treatments and support of a few you trust, things will likely improve a lot 🤞🏻X
ZA31 in reply to
Oh wow! It sounds like a lot, I’m sorry! I have to say your clearly a strong person, having to deal with so much and getting through it!
I am currently on hydroxychloroquine and have had a steroid injection, but tbh I haven’t seen much change yet! But I know it takes a while to kick in.
How come u have lost so much weight? Because of the side effects of drugs?
Give the hydorxycholoroquin time to kick in. When I first got diagnosed many years ago now - it changed my life. I also attempted to manage my stress - as that hugely affects my symptoms - and the two combined gave me pretty much 10 years of living a mostly 'normal' life assuming I managed my sleep and stress.
Omg wow! That sounds really promising! How long did it take for the hydroxychloroquine to kick in? And how did u manage pain during the time that it hadn’t kicked in?
Obviously everyone is different - but I hope the hydroxy has the same effect for you. I was on sodium diclofenac initially - but after about 7 years it wasn't as effective so then moved onto Naproxen. Now I'm having trouble with pain relief but just in my wrists. So seeking advice on this forum for other ways of managing the pain.
Hi,I have the same diagnosis.They tell me I’ve got symptoms of lupus,Sjogrens,and rheumatoid athritis.
I also have a lung disease NSIP.
Life has changed for me since my initial diagnosis of NSIP..
It takes a lot of adjustment I don’t think I’ve properly come to terms.even 3 years on.
This forum is really helpful.
You can just come on and have a moan.nobody will judge.
If you want to contact me or Private message me,that’s fine.
Be very kind to yourself,I usually just say I’ve got lupus,people have usually heard of it x
Hey! Thanks for reaching out I really appreciate it! Would you say your condition is now managed and controlled three years on? I am in pain all the time, I don’t even feel like myself anymore!
Hi ZA31 just wanted to say welcome to the group - it’s a very friendly group with members having a wealth of knowledge - I know what your going through, it took me about a year to fully except my diagnosis of Lupus & RA , it’s all a lot to take in , just take one day at a time and if you have any questions just post on this forum and someone will answer your question - sending a big hug to you 🤗💕
Hi ZA31 welcome to this amazing group. I was diagnosed last year and I have found the amazing people on this forum so welcoming and helpful. They have been very helpful to me.
Thank you so much! That’s so sweet!!
Welcome to the group, I was feeling so down and not well all the time. At one of my rheumy appointments, she had students in with her, I kind of said directly to her, what is actually wrong with me as nothing showed in my blood except a very high RF but at the time I had no pain. She said I had MCTD, my eyes and mouth have been so dry for years but she is a stickler for blood tests. 8 years down the line, I seem to add things to my list, lymphoma, gastroparesis, possible GCA but the piece of artery that they biopsied didn’t show disease but was kept on steroids for over a year and now the joint pain has joined the party. I’m on hydroxy, discoid lupus has just been officially diagnosed as well. She is now giving me retuximab after I’ve had my third vaccine which I got last week, in the hope to settle things down, just want to sleep all the time and I braved a wee holiday but don’t have the energy to enjoy it. When I was first diagnosed I though it was equivalent to a doctor saying it’s just a virus, thought it was a cop out to keep me quiet in front of her students. I now have plugs in my eyes and have been given things to help my dry mouth, 3 doctors have said I could have sjogrens but not my rheumy. No one has heard of CTD except when I went to an ENT, he said it’s a complication with it to get lymphoma and he was right, I was the unlucky one to get it. It’s easier to say to people lupus. Hope things get better for you xx
in reply to Lizard28
I’m getting a strong feeling that rheumis don’t like thinking about orifices at all. They are tactile jointy folk for the most part.
And of course Sjogrens is very much a disease of orifices - especially women’s.
And since the pandemic many doctors have had the perfect excuse to opt out of examining orifices. Dentists, eye consultants, gynaecologists, urologists and gastroenterologists either pass to endoscopists, CTs, MRIs or send us self swabs.
So I feel those with Sjögren’s are going to be some of the rheumatology patients worst affected by overall lack of care during this pandemic for this reason. Most chose rheumatology because it usually doesn’t involve orifices or having to mention a hard to pronounce Swedish name! 🥺😳🙄xx
in reply to
Do you have an orifice obsession 🤣
in reply to
Oh Lordy I wish I had no orifices at all now it would make life so much easier! Or would be great if health professionals would think orifices so I didn’t have to! 🙄😂
in reply to
In fact I often think it might be a fine thing for my soul to be taken out of my atrophying body and be put into a nice little modern robot with very little engineering to go wrong!😂
It is very hard going, this forum has been a wonderful support. I was initially in denial l had been a very fit long distance walker and now struggle to walk 3 mike's with trek poles. My advice would be try to think about what you can do and do it, don't 'wait to get better' . We are all on our individual journeys and need to accept that, lots of people with good intentions will say "l know X and they have Lupus and have just run a marathon" they mean well as they want to give you hope, but when walking up the stairs is a major triumph it is hard to take. Your right hydroxychloroquine takes 12 weeks to really get working, and that's a long time. Do ask anything on here everyone is really supportive and it is helpful to have somewhere that you don't have to put your 'brave face' on.
See that’s the thing every single person (people who don’t actually have an auto immune condition) keep saying oh you will be fine in a few months, once the disease is “controlled” so I’m literally getting through the pain hoping I will get back to some sort of normality. But reading people’s stories, I’m realising that may not be the case 😞
You might get 'back to normal' who knows, take each day at a time and try to think what can I do today. Even something as simple as ring a friend, or find a new audiobook. For me, each day l try to have one task to give me a sense of achievement. It is about finding out works for you to give you some control and positive vibes. I do hope you make a full recovery and never have another flare, but this forum is here for you either way.
That’s great advice, I will definitely try that! I think I need to feel back in control!
Thank you I hope so too! 🤞🏻
Welcome to the world of weird and wonderful conditions with the strangest names, scary symptoms and strong people on this forum who totally get it! There’s always a fellow sufferer no matter how odd it is who you can talk too.Hope you are having a good day. 😀
ZA31 in reply to
Thank you! I’m already feeling very welcome! Really appreciate the positivity and support on this group!
I only joined this forum last week and it’s already been a fantastic support. We’re all going through various symptoms but we can talk to each other about it. This opens up to a wealth of information. I have already shared some interesting points with a new doctor I saw and she listened to me! It’s so nice to have a doctor that listens! After our conversation, she had me do a number of blood test, urine sample etc. She has also ticked ‘urgent’ on the forms for results. So I’m truly grateful for the prompt feedback and information that I have gathered from lots of lovely people on this forum. Thank you! I hope I can impart some useful information at some point too. 🙂
Hi there. You will find this place a safe space to rant, laugh, and get the best advice and support. When I was told I had UCTD I said to the Rheumatologist you made that up. It sounded ridiculous to me and I thought it was a fob off. I have been sick for 12 years and my diagnosis has changed many times. It is hard to come to terms with it but this is a great place to start x
Hey!! Nice to speak to someone who also has UCTD.
I was frustrated when she told me aswell, I asked which specific disease I had, she said a mix of three!
when u say ur diagnosis had changed a few times, did they specify what you had or was it still
UCTD?
xxx
Welcome ZA31, I only joined this Summer, I had my first rheumy appt recently and UCTD was suggested. I have a follow up appt in three weeks. Not sure what will happen.
I'm finding it difficult sharing how things are with family and friends.
Thanks for reaching out!
Yes I completely understand! I’ve told my family and they don’t fully understand which frustrates me more tbh. Have you tried telling family?
Have they put you on any medication yet?
If u Google the spoon theory that explains really well what it's like living with autoimmune conditions. I showed this to my friends n family n they now have a better understanding of how it affects us. Now I don't have to say I'm ill to my daughter's..I can say I'm low on spoons n they get it!! You'll hear "spoons" referred to a lot on here too. 🌈😽😽Xx
Hi and welcome.I have just been diagnosed with CTD and only found out yesterday looking on My Chart after being told it was first lupus, then pysoratic arthritis I'm on hydroxychloquin and have just started methotrexate injections, so I'm in the same boat with no label but it's being treated
Best of luck, we are here to help and advise.
Thank you for your message! Would your say your symptoms have been controlled with hydroxychloroquine ?
Xx
Hi there, as a coincidence, I woke up today thinking that the debilitating fatigue that has plagued me for well over a year hasn't been quite so awful for the last week or so and realised that I'm due my first 6 month Rheumatology check up next week. My Rheumatology Consultant said it would be six months to have any effect and maybe she was right. I don't know why it has been six months and my body didn't like it very much for the first 3 and on occasions now. It hasn't got rid of anything else, but it isn't any worse so I guess that's all I can hope and be grateful for.
Oh wow! That sounds promising.. hopefully the medication is working for you!Did you take anything during those 6 months to help with the symptoms?
Hi ZA31🤗 Welcome to the Exclusive Autoimmuners Club!! You've come to the right place to learn all about autoimmune disease, this is a very informative, supportive group where we can talk to others who know what it's like living with this stuff 24/7. I have learnt more about lupus here than from any of my doctors. You're not alone!! It's hard to take in the diagnosis n there is a certain amount of grieving that has to happen..it's natural. Life is going to change for you and the future is unknown..it's a scary time!!
There are five stages of grief and it is considered healthy to go through the phases..it's natural grieving response n it's important to go through the stages..if someone gets stuck in one of the stages it can lead to problems later on in life. An example of this would be someone who's stuck in anger stage of grief often have problems with alcohol n problematic behaviours.
The first stage is denial..followed by anger..bargaining..depression..and acceptance is the final one. So be prepared to have emotional rollercoaster feelings about your diagnosis. Were not robots n when the physical body starts playing up our emotions are affected.
The main thing is that you're here with us now n we totally get it..it's life changing for sure. 🌈😽😽Xx
Thank you for the the kind message!!!
I think it’s the “not knowing what could happen” is the thing that makes me panic! Like the doctors saying “your kidneys COULD be affected” and “your EYES could be affected”… it’s the living in limbo that I’m also struggling with! How does one live not knowing how their health will be in the next month or year etc? It’s tough to even think about the fact that I may not be the same person I am today next year 😔
Unfortunately with these conditions..none of us know what's around the corner. However you will learn to live life 'differently' so to speak. For instance I was diagnosed with Subacute Cutaneous Lupus Erythematosus (SCLE) in 2017. I'd never even heard of lupus..I was in terrible shape generally and wasnt on the internet..I felt lost, alone, scared etc..at one point I was considering ending it all. Now here I am with a treatment plan that's working for me..I have quality of life back albeit different. You will learn to live with your condition n with the support here we'll help get u through it!!
There's no quick fixes with these conditions..u will have to make adjustments..but you will have small victories here n there n they make all the difference!! Small things become more important somehow.
When those feelings of panic happen..try to focus on your breathing..this will help to calm your anxious mind. Sit up straight n take a deep breath in through your nose..hold for three seconds n then gently blow your breath out again through your mouth..do this for as long as u wish n you'll find that it helps to calm the body and those thoughts racing through your head right now. Which is totally normal by the way 😉🌈😽😽xx
Thank you so much for the advice! I actually will try the breathing thing as I need to find a way to cope with my thoughts!
thank you for the support and advice! Xxx
Hi. I was diagnosed with uctd in November after what I now know was a flare that lasted for months . I'm on hydroxy. After 8 weeks the. tiredness started to lift and I've carried on improving since. Did a phased return back to work, back to normal ish hours now, I dropped one afternoon to do my cleaning jobs so I could relax at the weekend.I have to be careful, listen to my body. If I'm tired, I stop. I am no longer able to play netball but do more walking. And I find myself automatically planning things I want to do with gaps so I have a couple off days between things like going out with friends or shopping. It's adjusting so my schedule isn't jam packed.
I still don't understand and find it difficult to explain to others.
Hope this helps you a bit but of course everyone is different x
Wow that’s amazing 😀!! I’m so happy that your symptoms are improving!
In regards to the planning that’s sensible as I am realising when I do something big I am exhausted for the next few days.
Do your family and friends understand?
Hi i I was diagnosed with MCTD about 5 months ago after struggling with things for years. Finally Guys ruled out many things and suggested MCTD. Once they got a rheumatologist on board - the dermatologist and rheumatologist agreed the diagnosis. I am on hydroxychloroquine (dose increased 2 weeks ago) and yesterday was put on statins as well as my cholesterol keeps going up. Going through a bad week at the moment. Have to say things did improve on the hydroxychloroquine - so am hoping this bad phase will pass. Fatigue, sweating, sore ribs. Just ease up and rest when this happens. I do find as a recently diagnosed person this forum is helpful. Can feel isolated sometimes when people don't understand.
Thank you for your message and sharing your story.
Yes your right in regards to feeling isolated, I’m so sick of people saying “you look fine though”!!! I genuinely don’t feel like talking to my family and friends about it anymore.
As for the hydroxychloroquine, it’s still early days for me, I’ve been on it for about 4 weeks and haven’t seen any difference yet.
I’m hoping things keep improving for you!
Hi - Don't worry about friends ands family not understanding. When you look the same, no-one can see the difficulties in just normal activities like meeting friends for coffee. Sometimes you just want to lie down as even sitting seems like hard work! Take your time in getting to the acceptance stage (everyone is different). Things will keep coming up that throw you (symptoms etc). It takes time to come to terms with everything. I no longer feel the need to explain my condition to friends and family - as long as a few people around me understand - and help in my bad moments, I am OK with that at the moment. I stopped explaining when you constantly get a blank look as people are only being polite in asking. V disheartening.
Once you come to terms with the fact that you have make adjustments and live your life differently (tests, medication, hospital appointments, not drinking, resting more etc) - life does improve and you make better choices about what you do with your time.
🙏
Yes that’s the thing even the people closest to me I can see they just ask ‘how I am’ just to be polite. I’m still struggling to accept it tbh, accept that this is MY life and My problem and your in this ride alone, no one is with you and you have to find a way to be ok with that.
Like you said symptoms come and new pain starts and I feel like I’m being dramatic if I speak to anyone about it.
Your feelings are valid - take your time and allow yourself to feel them. As you say - until someone goes through it, they don't get it. I feel relief that mentally I am in a better space now. I was upset, angry etc for some time. It is hard.
I find that exercise helps. I go to the gym and just walk on the treadmill on bad days. I always feel better afterwards.
You can write to me anytime.
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