Newly dx with UCTD

[Limerick]

Hi folks, I’m knew here. I happen to stumble upon this group at 1:30am. Recently diagnosed with UCTD. So all of these new things happening to my body is mind blogging. Feeling lost. The itchiness is CRAZY! The fatigue. I’m a person who use to work out 5x a week. At the gym at 4:30am. No longer can I do that.

[KayHimm]

Many here who will understand. You are still you! Good to have you here!

Xk

[Limerick in reply to KayHimm]

Thank you so much for your kindness 🥰

[Hidden]

Don’t give up hope, you may not always be able to do the things you use to, but you should be able (and it may take time) to get back to doing most the things you love most the time. And exercise is good for us, so on the days you are up to it, ‘just do it’. I know it’s overwhelming but you will get into a rhythm that works for you. You will find it’s not as bad as it is now. All my best, and stay strong, you’ve got this! And on days you don’t feel like you do, we’ve got your back! You may find you can get back to 100% of loved things. Don’t give up hope.

[Limerick in reply to Hidden]

Wow, you have just made me feel like that pin hole of light is getting bigger. Thank you fir your encouragement 🥰

[Hidden in reply to Limerick]

Absolutely. We are here to help each other!

[Lupiknits]

Welcome! You’ve already seen many of us share the same experiences. I’m very glad I joined here x

[UCTD]

I too have been in that situation, crazy itching, and sleepless nights, burning feet and hands, amongst other things.

However, after many visits to the rheumatologist and GP, and trying a concoction of meds, it is much more bearable now, with the treatment I am currently on. Where are you living?

There is a cream that can be applied to your skin called SUU Balm Itch relieving which worked for me and I also had to take antihistamines.I no longer use soap in the shower, and moisturise like crazy. I was initially diagnosed with UCTD most likely lupus, now leaning towards Limited scleroderma. We share many symptoms in connective tissue disease, and this forum is great. Good luck

[Limerick in reply to UCTD]

I was thinking if changing my soap hoping that might help. I live in NewYork.LI

[Horsewhisper in reply to Limerick]

Hello and welcome! You might find a change in soap helpful, something pure and natural, free from chemicals. Alleviating the itch from the inside could also make a difference, such as adjusting your diet to something that is autoimmune friendly. Loads of useful stuff on this site, or have a google. Anti-histamines help with the itching too. I have UCTD and have received so much support from people here as well learnt a huge amount about managing the condition whilst making the most of keeping active. Take it easy and keep positive.

[Maureenpearl]

Hello Limerick and welcome x

[Limerick]

Thank you everyone for your kindness and support 💓

[misty14]

Hi Limerick

Welcome to the UCTD club of which there are many members on here including myself!. As others have said we're here to support and guide so ask anything your not sure of. Have you been started on any medication like Hydroxy to see how you get on?. It's good with skin , joints and fatigue!. Itchiness can be helped by an anti histamine.

Do hope you find this forum helpful and you feel better soon. X

[Limerick in reply to misty14]

I actually am on Plaqunil twice a day with norvasc for the Raynauds.. and they thought medical marijuana might help me sleep

[misty14 in reply to Limerick]

IT can take time Limerick to find the right combination of meds to help. Hydroxy is a milder immune treatment that we're often started on to see if it helps!. I hope your combo helps you and your better soon. It's extra tough when we can't sleep properly. Keep us posted how you get on. X

[Limerick in reply to misty14]

You all are amazing. It’s so hard to talk with my family because they don’t “get it”? Not that they don’t believe me but because there is no visual effects. I try and hide it. So at times I think I’m nuts lol

But you all are making me feel like I’m sane. Thank you sooo much

[misty14 in reply to Limerick]

You've certainly come to the right place Limerick and I agree with brooksidecourt that given time your family will 'get it as its a HUGE adjustment for you all. You might like to show them info on UCTD . If you google the condition the hospital for special surgery comes up and it gives such a good explanation of UCTD because it can be confusing!. I felt exactly like you before I joined this forum and now feel so 'normal' as we've all created our own versions of this to help us cope with such a different life!.

I'm sorry too you have the added extra of nerve damage after surgery. I too have this and regular nerve blocks which work sometimes better than others!. Nerve pain is also very hard to live with!. Do you take any painkillers for it like Gabapentin?.

Ask anything you want because I can guarantee if its a symptom that seems funny to you there will be someone on here who has suffered it or has experience of it. Keep us posted. Xx

[Limerick in reply to misty14]

Hey misty14,

I can’t take Neurontin or Gabapentin. It doesn’t agree with me. Weird reaction.

I guess I just have to wait the complete 4 months of being on the Plaqunil. That’s When my Dr said I “should” see changes 🙏

I’m going to go on the HSS site.. thanks 😍

[misty14 in reply to Limerick]

Hi Limerick, there are other nerve painkillers like Pregabalin, Amitriptyline and Duloxitene!. Have you tried any of those?. It's hard sometimes getting the right balance with drugs. Placquenil can take awhile to work although I noticed a difference quickly, we're all different!. Is four months when you go back to your Consuktant?. I do hope it helps you soon.

I found the HSS info on UCTD really helpful. Keep us Posted. Xx

[Limerick in reply to misty14]

No, my Dr told me it takes about four months for me to notice a change.

I’ve been nauseous ALOT lol, not sure what that is. Could be the vitamins I’m taking because I now was dx with osteopenia 🤷🏻‍♀️.

I’m going to be ok, I know I am.

Positive thoughts, knowledge and by the Grace of God..

[misty14 in reply to Limerick]

Hi Limerick, it's a lot to take on board suddenly!. You need time to process being diagnosed with such a condition!. The nausea coukd be the Placquenil as I had a similar problem with it. Couldn't take it daily so do every other day which is so much better. Also what brand are you taking of it?. Different ones can have different effects on us. I find Blackrock and zentiva brands are the best as quite a lot of us on here do. Have a look at lupus Uk's website as it gives a lot of info about this!.

Sorry your osteopenic but good your being treated so it can be reversed .

If the nausea persists you can get anti-sickness pills from your GP as its unpleasant all the time. Does your Rheumy dept have a nurse helpline you can ring for advice?. This is such a help if they have as they have direct access to the Consuktant for advice!.

Lots of TLC and you'll get there. Xx

[Hidden]

Limerick, the family that lives with you will get it in time. Maybe those family living in their own homes might take longer because they don’t see your day to day struggles, but those you live with will. They may even now, but are having a hard time adjusting, or feel helpless with what you need, etc. Maybe scared to ask? Symptoms change so very fast that it’s hard for us to keep up with ourselves🤷🏻‍♀️can you imagine viewing this from the outside. It’s hard, because for me, I have 5 adult children living their own lives. We are very close, but I don’t tell them what I am going through because I don’t want to worry them. When I feel my worst, they don’t see me, so seeing me only when I’m not so bad leaves that part a blank in their minds. When on family reunions, etc., if I feel badly I go in my room ‘to take a nap’ and that’s pretty much all they know. Last July we were all hiking up a quarter mile of huge boulder after huge boulder and I got super winded. My kids are use to a mom that hikes with them, and has energy, goes to the gym, does yoga...I didn’t expect to get that winded. I think it kind of freaked them out. My son Austin left his own young family and insisted on being by my side. I felt good he loved me so much, but badly to have him worry like that. But it was all good. Your family will catch on too. Be patient with them.

[Limerick in reply to Hidden]

You said exactly what is happening. I use to go to the gym 5x a week. Up at 4:30am before work. Energetic. On the go.

Last year I had surgery which left me with sciatica nerve damage. I’ve had 5 nerve blocks and it still doesn’t take the pain away completely.

Then I was dx’d with this. BAMM BAMM LoL . And like you, I dint want them to worry. They have there lives to live and I dint want them this to interfere with it.

I’m not a complainer. Nor do I have pity parties lol.

It’s all so new, I know I’ll get it under control.

I know it’s going to be ok.

And I’m grateful for all the support

[Hidden in reply to Limerick]

You stay linked in here and you will find LOTS of wonderful support! 🙏 We May even make you laugh at this once and awhile (laughter is the best medicine). But also a place for you to let it all out to people who totally understand and you can let it out without worrying your family. We are here for each other. You have a second home now.