Undifferentiated Connective Tissue Disease - LUPUS UK

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Undifferentiated Connective Tissue Disease

Crazy_Cat_Woman profile image

Hello everyone, just an update.

My Rheumatologist tells me that I have Undifferentiated Connective Tissue Disease. I’ve read up on it but I’m really not sure why they have put me in this box rather than diagnosing Lupus. Any thoughts?

I’m now on Hydroxychloroquine which seems to be helping with some of the joint pain. I still have the excruciating pain in my kidney areas and lower left abdomen, though. I’m hoping that this pain might lessen with more time on the new medication.

Soft hugs to all you super people. Thanks for all your words of encouragement so far xxx

69 Replies

Hi. It can take a while to get a diagnosis. The positive thing is they have recognised that you have a connective tissue disorder. I started out with UCTD on my medical records before seeing a Rheumatologist in early 2015 and he changed it to MCTD, with a collection of autoimmune conditions including SLE.

I hope you get some relief being on Hydroxychloroquine, it can take time to work but is effective for quite a few people.

Best wishes

Thank you so much for the reply. I was feeling a bit confused about the diagnosis, but you are right....it’s positive that they have recognised it as connective tissue disorder and that the treatment plan seems to be helping.

Paul_Howard profile image
Paul_HowardAdministrator

Hi Crazy_Cat_Woman,

As suemh2 has kindly said, it can take a while to get a confirmed diagnosis of lupus and other connective tissue diseases but it is good that a cause of your symptoms has been recognised and it being treated.

Conditions like lupus are quite complicated and therefore diagnosis is based on a combination of various blood tests and presentation of certain symptoms. It is quite common for people to present with some of the criteria for a diagnosis, but not enough to confirm one particular condition. This is where the undifferentiated connective tissue disease diagnosis comes from.

I'm sorry to hear that you have been experiencing pain in around your kidneys and abdomen. Has this been investigated? Have they done any urine tests to look for infection and or blood/protein?

Hi Paul, thanks for replying. They have never got to the bottom of this kidney pain. I perhaps need to push a bit more to find the answer. I assume it’s related to the UCTD but I could be wrong.

Paul_Howard profile image
Paul_HowardAdministrator in reply to Crazy_Cat_Woman

Kidney inflammation such as that seen in lupus doesn't generally present with any pain or discomfort. This suggests that the pain may be more likely to be either muscular or due to an infection. A urine test would definitely be a good idea.

Hi Crazy_Cat_Woman

Hydroxychloroquine can take time to build up in your system so it's good that you're joint pain has eased off somewhat. I'm on 200mgs twice a day (400 daily) n I did well on it but then my dermy told me to reduce it to half n boy did I notice the difference..so after trying to reduce I realised that it's helping me more than I thought it was.

Gentle cyber hug to u from me 🤗

Love your name by the way!!! 😉😂😉Xx

😀😀 I like your name too!

Jaybz profile image
Jaybz in reply to Krazykat26

I’ve been on 200 2/day and was feeling well, so rheumy recommended reducing to 200 1/day. About a week or so later and my hip joint has started to ache badly, fatigue has set in.

Could this be the result of reducing? Symptoms returning so quickly??

Krazykat26 profile image
Krazykat26 in reply to Jaybz

Funnily enough although this is an old post I've just been going through the same thing..dermy asked me to reduce hydroxy n I've done it but lo n behold symptoms r worsening two weeks on reduced dose..ii increased it again yesterday!!

So I would say that yes it's possible for symptoms to return quickly when hydroxy is reduced xx

I have been in the undifferentiated connective tissue category for thirty years. I used to think I was the only one on the planet until my rheumatologist said it may be the largest group he sees. Usually it seems to mean someone who does not meet classification for one specific disease. But I actually do meet SLE classification and maybe you do too. Then it can be a judgment call. I didn’t ask my rheumatologist for many years, and he explained in a minute. Some put emphasis on the titer if ANA and whether there is low complement. Yours may have a different view. Message me if you would like some good articles to read or want to know details of my diagnosis. The literature shows many people stay in this category and do not get kidney or brain disease, but not all. Know you are far from alone!

Thank you! That’s very useful to know. I will be sure to ask the Rheumatologist for a better explanation of the diagnosis at my next appointment. I do have a low ANA levels (weakly positive is how he phrases it) so perhaps that is the reason for his UCTD diagnosis. I have all of the other lupus criteria, including malar rash and thrombocytopenia so it’s just a bit confusing.

Yes, sounds very confusing with malar rash and thrombocytopenia. But they prefer, I think, to under-diagnosis and watch than to over-diagnosis. Do not be surprised if other doctors ask if you have lupus or your consultants use the term « lupus-like connective tissue disease » when talking to you. They are just descriptions. Happens to me all the time. As I said, you are not alone. You have your own color and shade within the spectrum. Think of yourself as unique. 😅

misty14 profile image
misty14 in reply to KayHimm

Hi kayhimm

I've been in the UCTD category for thirty years too and always thought I was unusual and only one to have been in it so long. Fab to see you on forum. X

KayHimm profile image
KayHimm in reply to misty14

Just thinking the same thing as I posted a response to your post! Too bad we couldn’t have met back then. So there are some great things about the internet. So glad you are here. 😘

Hi originally I was told you have lupus shock horror what going to happen then just getting used to having lupus I get a new consultant and now I have mctd I but how can I have two different diagnoses he said lupus can take yrs to get a definitive diagnosis even with positive a n a bloods ?but if I have a choice I’ll take mctd everyday I think the question you are asking is very common

We are allowed to have more than one disease

I have 20ml injections once a week if in doubt ring the ruminator nurse

I forgot to say the consultant said the treatment is the same as I was on for lupus and he said in America mctd is also called non diagnosed lupus?

No. Mctd has three categories. Lupus like, scleroderma like and polimyositis like. Depending on which one you have the prognosis is slightly different. The treatment is same as for Lupus thou, symptomatic... Doctors sometimes just call it lupus as it is easier to pronounce

in reply to miccika1

I often think that's the case. "lupus" meaning, autoimmune disease(s). Lupus is a generic term for "autoimmune".

My diagnosis (given by consultants over the years) also varies. The first two were Lupus, followed by several others.

"Lupus" is considered to be a rare condition, but if you have thyroid autoimmune diseases, it looks "lupus" and if it looks lupus, it's not wildly different. I don't feel that there's "pure" Lupus, based on recent studies. We used to assume that "malar rash" is Lupus, but others who have thyroid diseases/other autoimmune diseases may also get it. So, once again, it's "lupus" again, used as a generic term.

UCT diagnosis seems to be an easy to come up diagnosis (according to my impression). I have seen consultants commenting, it's only a "mild form of disease" with different features" without checking patients medical history. I heard one Cardiologist, commenting it's just "trivial, just several features, nothing serious". But again, does he know "what lupus means"? So there's some subtext in everything.

People often end up here on Lupus UK as there are no other charities that include other autoimmune diseases. Lupus means autoimmune to doctors, too. But rheumatology demands you to fit into the tight space.

I have seen patients who had organ involvement placed on immunotherapy ended up losing Lupus diagnosis because no antibodies left. They say "you are officially cured". A lot of medical nonsense exist, too. Apparently, there are some studies that patients remain ill without antibodies. It makes complete sense to us, patients but some top Rheumatologists vehemently disagree.

They keep checking antibodies as objective indicators to see if the disease is active or what diseases are there. As a result, many people fail their tests and wasted 10 years (I have seen cases losing a whole life) watching their education/work/family life going down the drain.

Rheumatology needs to be made aware whilst they are busy checking and re-checking bloods, people's life has been left busted for good. They probably know by now, but they are busy staring at the computer screen and listen to you only when they feel they have to.

But they still revert back to their belief "antibodies" as proof of the disease and its activities. Also, they are not really offering "integrative" approach whilst lupus is systemic. Recently, my GP asked my Rheumy to refer internally for other issues stemming from the systemic disease, so far, the present Rheumy has not adopted that approach. I'm waiting to be referred to another Rheumy. So even if you got your diagnosis, it is still an uphill struggle.

ncbi.nlm.nih.gov/pubmed/222...

Genome Med. 2012 Jan 27;4(1):6. doi: 10.1186/gm305.

Emerging patterns of genetic overlap across autoimmune disorders.

Richard-Miceli C1, Criswell LA.

miccika1 profile image
miccika1 in reply to

Yes you do not need to have positive antibodies to get diagnosed w lupus but if gou do it helps differenciate the subtype and treatment as different anybodies could predict more likely disease outcomes

in reply to miccika1

Thank you. I have had antibodies with immune irregularities.

I realise that this is off-topic. Thank you.

It is a different condition w different symptoms. The diagnosis should depend on the type of autoantibody that you have. you might not have autoantibodies specific to lupus. Which ones do you have?

Hi there, rest assured wether it’s lupus or UCTD that you’re on the correct medication so that’s great. I was diagnosed with UCTD in May 2018 as I didn’t have enough criteria for lupus but by time i went back in October 2018 I was given a SLE diagnosis as I had become anaemia and therefore had 5 of the diagnostic features for SLE, but it can take years, the photos id taken of butterfly rashes and raynauds fingers etc helped so take pics and keep a diary. Xxx

Hi, I'm diagnosed with UCTD too. I have a high titre positive ANA, I'm Ro+ and have plenty symptoms, but not all the blood markers (I'm negative ds-DNA) and I don't have the Malar Rash, though I've had plenty other rashes suddenly occur out of nowhere. My Rheumatologist held off for a year to give me any diagnosis (just kept putting 'possible', then 'probable') because she was wondering that other things were going on and she was testing for a response to the medication. A good response usually means they are barking up the right tree. I found the Hydroxy did wonders for my small joint pain, so it's great to hear that it seems to be making a difference for you. This was the first good sign that moved my diagnosis to 'probable'. Then when I was tried on Mycophenolate Mofetil and that had positive effects, the UCTD definitive term was used -- as one diagnosis...

A year and a half after my first rheumatology appt, I finally got confirmation of a rash biopsy, which was not Lupus, as could have been suspected, but a form of Vasculitis, which is what my Rheumatologist suspected all along. So, in my understanding, that is also why sometimes you're not given a Lupus diagnosis up front.

These auto-immune diseases tend to come in packs and many of us end up collecting more than one diagnosis. But the bottom line is that you get the same medication treatment whatever your connective tissue disease diagnosis anyway. And if there's something else, you'll likely be treated for that too separately. i.e. I'm also on high dose antihistamines and Montelukast to try and stabilise the mast cells, which could be behind what created the Vasculitis.

Sorry you've entered this particular world of hell, but nice to have you with us. : )

Panda x

KayHimm profile image
KayHimm in reply to panda2

Thank you for describing your process to diagnosis. It is difficult! Your description seems to show the variety of undifferentiated connective tissue symptoms and signs but also maybe some similarities. Most of us do seem anti-DNA negative, which was another thing my rheumatologist listed on the « not lupus » side. So far none of us have kidney disease or major brain involvement. It is very interesting to not only read the medical information but actually hear from actual patients whose rheumatologists seem to think like mine. Wish I had had access to you all many years ago! As you pointed out, you have been given the treatment appropriate to your symptoms, not your diagnosis.

Hope your treatment continues to help. K

panda2 profile image
panda2 in reply to KayHimm

Hi KayHimm,

I couldn't agree more that hearing from others with similar experiences and diagnoses is profoundly interesting. I don't know anyone with Lupus in my 'real life', let alone anyone with UCTD! It was actually because of this website that I got a grip of what was actually going on for me and how the label didn't matter. It's really nice that you have such good dialogue with your Rheumatologist -- asking them to explain it was a great idea!

P x

KayHimm profile image
KayHimm in reply to panda2

Took me over thirty years! But, yes, maybe our collective experience could help the many here searching for a diagnosis or trying to understand the one they have. His explanation was really pretty simple. When I saw the proposed new SLE classification posted here with the new weighted system, I could see his reasoning even better. Come to think of it, I don’t know any lupus patients either nor any our undifferentiated category. But now I know you! K

panda2 profile image
panda2 in reply to KayHimm

: )

Hi crazy cat woman

Welcome to the UCTD club where there are a lot of members as you've seen on this forum. I m glad you have been started on treatment that is helping. I've been UCTD now for thirty years and it hasn't changed in that time but I've got a Rhdumy that is keeping an eye on any changes. I hope you have too as this is what should happen with us with this diagnosis!. As I understand it it's our bodies not making up its mind which illness to be . We've got symptoms of several CTD's including lupus and bloods negative for the specific lupus tests like dsdna!. I have positive Ana and low complement, low white cells and lymphocytes and that's about it!. No wonder we get so tired with all this going on!.

You've come to the right place anyway for great chat and info so welcome and I hope you find it helpful. Love your name too, guess you have some furs at home?. Xx

KayHimm profile image
KayHimm in reply to misty14

Love your description of how our bodies not making up their minds which illness they want to be! Guess my doctor was right that there are a lot of us, even though you must have felt like a rarity, as I did, years ago when I was diagnosed with UCTD. Even doctors would look at me with a puzzled look. But now I have a group! I bet if we all listed the responses after we tell people our diagnosis, we would have a good laugh 😂. K

misty14 profile image
misty14 in reply to KayHimm

So agree kayhimm. I've had a lot of doctors giving me the puzzled look so now I say UCTD like lupus and they understand better!. What do you say?. I bet we would have a good laugh or cry at others responses!. It's great to feel more normal!. X😊

KayHimm profile image
KayHimm in reply to misty14

Haha. Well, a few have just asked me straight out if I am sure I don’t have lupus. I answer, « Yes, I’m sure. » So I finally had my rheumatologist explain it to me. When my new internist’s first question on second visit was, « Now, has your rheumatologist given you a definitive diagnosis yet? » I rattled off exactly what my doctor had said. She was fine with that. When I told my rheumatologist the story and how I was thinking I doubted after thirty-five years he was changing his mind, he had a good. 😂🤣 The responses from people have not always been easy to deal with. How about for you?

misty14 profile image
misty14 in reply to KayHimm

Hi kayhimm

Love your idea of coming up with new name for us UCTD patients!. It is confusing all the different diagnoses they come up with!. Are you in USA as you mention interns?. How did the consultant explain UCTD to you?. For years I hadn't had it explained properly so really felt unbelieved and not really ill despite developing new symptoms and auto- immune illnesses!. Then I joined this forum and oh boy discovered what UCTD meant and felt I had a proper illness. It gave me more confidence in dealing with the medics and I printed off an American article thanks to Ann whose also UCTD and have never looked back!. I shall always be grateful for this from the forum!. I have found that doctors don't understand the UCTD bit but when I add like lupus they understand that illness much better now thru education. What do you say?. I'm sorry you've had some tough outcomes with doctors!. I have too over the years , mostly to do with their attitude!. When I've found Rheumy's willing to treat on symptoms I've stuck to them like glue and have done well on their drugs regime!. Hope you've found the same. Xx

KayHimm profile image
KayHimm in reply to misty14

It was so long ago it is hard to remember! I remember on the initial consultation my rheumatologist assured me it was not « all in my head » since I asked about that. It was months later, after getting a facial rash after sun exposure, that he said I had a connective tissue disease. I just remember something about « not everyone can fit neatly in a box. » I also accessed articles years later on the internet and learned more. It has been harder to explain to friends and family than to doctors. Glad you like the idea of coming up with names for ourselves. I will go first: NNME connective tissue disease — no name, misunderstood by everyone connective tissue disease. 😍 K

KayHimm profile image
KayHimm in reply to misty14

Yes, I live in the U.S.

misty14 profile image
misty14 in reply to KayHimm

Hi kayhimm

It is so hard to remember going back thirty years!. I'm remembering different things as I'm replying to you. From one specialist for many years I had 'non classical lupus' . He was prepared to treat me on symptoms and not worried about inconclusive blood resukts. I'll always be so grateful to him and I've subsequently thought how brave it is to do that!. He did also say connective tissue disease. I did keep asking him for a diagnosis because I needed to know what to say to other health professionals I had to consult. The 'all in the head' bit is very important to us as we need to know what's caused our years of ill health on a worsening scale!. I found friends and family easier funnily enough as I just said I had a form of arthritis praying they didn't ask which!. Ha!. A lot thought I had RA!. Love your alternative name, sums it up beautifully!. How about connective tissue disease overlap with lupus?. What part of US?. I have a special penfriend from New Jersey!. Xx

panda2 profile image
panda2 in reply to misty14

Hi misty14, I'm taking a leaf out of your and KayHimm's book and will ask my Rheumatologist to give me a description of UCTD for others at my appt on Wed (if there's time). What you say is very similar to what I have found myself saying, which is that it is of the Lupus family. But then it still poses the problem that people tend to only associate rashes with Lupus, not having the slightest grasp of what is really going on.

So, yes, maybe NNME! : )

Px

KayHimm profile image
KayHimm in reply to panda2

Yes, Panda, that would be terrific if you ask him for materials. I am curious if people always have lupus symptoms, though? Can you have more scleroderma or Sjogren’s symptoms and still be “undifferentiated.” Many of us seem to have a few classic lupus symptoms like photosensitivity, maybe one typical antibody or a malar rash. Tell your doctor we want a new name! 😘 K

misty14 profile image
misty14 in reply to panda2

Hi panda

Lovely this conversation will help you hopefully on weds!. Hope you do have time to ask as it is important!. I found it a good way of asking what my diagnosis was and highlighting the difficulty of talking to other health professionals. My Consuktant then immediately understood and told me what to say. Let us know what yours says and I hope you have a good consultation!. It's so hard not being clear cut, trying to get the right help!. How I've wished over the years to be straightforward and still do. Xx

KayHimm profile image
KayHimm in reply to misty14

It does bring up a lot, right? You had an excellent doctor. It is an example of the importance of looking at the whole picture. He may have seen things you did not even know back then. Mild anemia and ESR can point to a connective tissue disease even when the specific tests are negative. I have always said I was glad my hematocrit had dropped eight points and that there was no “chronic fatigue syndrome” back then, because I would not have been diagnosed as fast. I know what you mean about feeling the need to better explain things to others with a name. But, you know, looking at it from a different perspective, these other doctors were probably just wondering to themselves how rheumatologists ever diagnose these crazy illnesses. CTDLO sounds good to me! I live in New York City. Now you have two people to visit. You can take a ferry. 😘

misty14 profile image
misty14 in reply to KayHimm

Hi kayhimm

Thanks for your great reply. Your so right re anaemia and ESR. Mine always showed inflammation better than CRP but doctors over here don't test ESR like they did anymore. What about U.S?. I miss that consultant so much, he retired and I had to move to another. Next one was very willing to treat and she felt it was more lupus and clear cut!. It's a certain fact it all depends who you consult!.

How are you at the moment with treatment/Consuktants?. I've always wanted to visit US for my forties!. Got three years to go!. Hope I make it !. Xx

KayHimm profile image
KayHimm in reply to misty14

That would a goal to look forward to then — good health and a trip to New York! I will give you my travel tips. I know when I was being tested years ago they were using the ESR and because of the anemia and the elevated ESR my internist knew something was wrong. I certainly have had ESR for years too but will check in July to see if I tested for CRP. I probably don’t need any of them. I feel fine except for the intermittent weird head stuff and the autonomic dysfunction. If my autonomic dysfunction hangs in there, I will be visiting London long into the future. How are you doing? 😍

misty14 profile image
misty14 in reply to KayHimm

Hi kayhimm

Thanks for your lovely message and travel tips offer!. It's always been my dream to go to New York and never been well enough but never say never. My ESR always showed up better than CRP. Did you know that it's a quirk of lupus that despite inflammation CRP can stay normal!?. It's to do with the liver. It's another way of diagnosing it!.

I'm glad your well apart from the autonomic dysfunction which must be difficult. Does it affect your whole body?. I don't know a lot about it!. I'm stuck on 7.5 mg steroids as not very well trying to reduce to 5 mg!. I've just broken my left foot so coping with big boot and crutches and hating it!. Hopefully it will heal in 4-6 weeks. My right one did!. Only did that 18 months ago. It's tough having this when I've taken bone strengthening treatment for years and last Dexa said my bones had improved!. Take care Xx

I was diagnosed in 2001 with textbook lupus - my consultant wanted to use me for her teaching! Fast forward to 2013, a new rheumy sent me to a lupus professor as I have no antibodies and she changed my dx to MCTD then to UCTD. It is now bandied around as SLE/UCTD or SLE or Undifferentiated Connective Tissue Disease/Lupus. I’m treated as for lupus so I have no complaint.

KayHimm profile image
KayHimm in reply to Fennella02

We really do get a lot of names, right? Thanks for sharing your experience with varying descriptive diagnoses. It helps everyone, particularly the newly diagnosed, to see that these variations are normal people in rheumatology. Patients do change over time too, and new diagnoses are added. Your point about treatment is important. Maybe we need to come up with our own name for us!

Hi there,

I too have UCTD. I was diagnosed in 2012. My GP sent me to my local hospital and they said there was nothing wrong with me apart from a low Vitamin D count. My GP then lost her temper and referred me to a teaching hospital. I was seen by the Prof in the CTD clinic. Once I was diagnosed I asked a tonne of questions about my blood test results etc. And thankfully the Prof had (now retired) a wonderful bedside manner and spent a good chunk of time taking me through the results.

Get your Consultant to take you through your results. A good Consultant can put things in 'lay mans terms'. Looking back at my notes from back then it was a case that I was on the cusp for an autoimmune disease and then negative for Lupus, MCTD, overlap etc etc. But positive for Sorgren's - I have 1 dry eye! Back then I also found an article that said if you remain in the UCTD bracket for at least 5 years then you usually stay in that camp.

I have lung involvement with my UCTD. I am super grateful that my lung involvement is mild and through pounding up and down the pool my lung function has returned to normal. 6 years down the road I have had no further damage to my lungs thanks to agressive and early steroid intervention. So I would have to agree with Paul, do get your kidney issue thoroughly checked out and shout shout shout if you have to.

Joy

KayHimm profile image
KayHimm in reply to Joy_1

You had a good GP and effective advocate. Sometimes they almost have to go on intuition, it seems, when certain tests are negative in the beginning. So glad your lung involvement is mild and you are swimming. 🏊🏻‍♂️😀

Joy_1 profile image
Joy_1 in reply to KayHimm

Hi Kay

Yes I have a good GP. However there was a delay. My GP thought my symptoms were down to stress and so the whole process for me was delayed. However I have come to understand that this is the norm. I could look back and say had she referred me sooner perhaps my lung involvement would have been more or less non existent. But I am a glass half full person and I am sooooooooooo grateful that I continue to remain in the 'mild camp' when it comes to my lungs.

As for getting in the pool and swimming I had to ask the question of my chest consultant "okay so I am going to take all the meds and and at the right times, so tell me what else do I do to help myself?". I know that had I not asked the question that I very much doubt I would have been told to swim swim swim.

And finally I have pushed pushed and pushed. It has been easier for me to do this I know as I am a food scientist. But I say a huge 3 cheers to YouTube as pictures really do paint a thousand words and this really saved me when I lived in 'camp fatigue' and wanted to understand more.

Oh and of course a HUGE 3 cheers to my fellow 'autoimmune HealthUnlocked club'. They really helped put the side effects from meds to bed.

Joy

KayHimm profile image
KayHimm in reply to Joy_1

Hi Joy—

That is hard about the delay. It is amazing that you push through and swim! I am trying to get back on the exercise track, which is really important with autonomic dysfunction. I will use you as inspiration to get me to the gym tomorrow! I just ate too many delicious low carb peanut butter and chocolate cookies!

Kay

Joy_1 profile image
Joy_1 in reply to KayHimm

Yum yum to chocolate cookies Kay. Not so keen on peanut butter.

When I first got into the pool I only managed to swim 2 lengths. I was exhausted, huffing and puffing. I was really shocked. Anyway I went 3 times a week and after 14 weeks I was swimming 65 lengths (30 ish then a 2 min break, then the rest). My chest consultant said 'wow we have never seen anyone do that before, well done, your lung function has returned to normal and you can now cut back a bit'. So I now go to an aqua class 3 times a week and make sure I 'go for the burn'. After that I swim for about 15 mins.

Recently a friend of mine who has RA of the spine recommended swimming with a snorkel + mask and I really enjoy that as you kinda meditate as well - just you, the water and listening to your breathing.

Keep hitting that gym - it will work wonders for you physically and mentally.

Joy x

panda2 profile image
panda2 in reply to Joy_1

Joy, that is an incredible turnaround to get your lung function back to normal. And to go from a huffing and puffing 2 lengths to 65 lengths is quite miraculous in 14 weeks! Well done, you!

Of all my medications, swimming is my favourite.

Panda x

KayHimm profile image
KayHimm in reply to Joy_1

That is wonderful that you are now at such a high capacity with regard to lung function. I know about the huffing and puffing and being able to do so little. The first trainer started me on the treadmill at two minutes on low. I have been extremely lax this past year after a set back with weird and hard to diagnose medical stuff. I couldn’t get back to the exercise program until about six weeks ago. I realized I had to get a trainer because there are too many things that need to be adapted. So glad I did, even though my first session confirmation after the evaluation said « physical therapy. » Haha. Now I have you guys to keep me motivated! I don’t know about you, but my doctors — every one of them — is on me about the exercise. 🏊🏼‍♀️🤸‍♀️🚴🏻‍♂️ We all just have to do what we can do — even if it is physical therapy.

Kay

Joy_1 profile image
Joy_1 in reply to KayHimm

Yes Kay, Panda and I will keep you motivated for sure. What about hitting the pool. Has your trainer suggested joining an aqua class?

I return to the person I once was when I get into the water. Heavenly ......

KayHimm profile image
KayHimm in reply to Joy_1

I have access to a pool at another gym. I used to love going there. Now that you bring it up, I think I am going to go back. I have this crazy nerve-related issue that causes severe issue

KayHimm profile image
KayHimm in reply to Joy_1

Sorry .. nerve-related issue that makes me itch severely when I go from water to the cold air. At home I use a hair dryer immediately after getting out of the shower. Going to see how I can get to the hair dryer fast enough out of the pool. Thanks for the suggestion! I was told swimming is the best for me because the cool water constricts the blood vessels and because of the floating position. I do remember feeling so free in the water. I am going to try it this week!

Lisalou19 profile image
Lisalou19 in reply to KayHimm

Interesting comment here! I do experience exactly what you describe after being in contact with water 🤔

KayHimm profile image
KayHimm in reply to Lisalou19

What do you experience?

KayHimm profile image
KayHimm in reply to Lisalou19

Happy to help with this uncommon condition. But it may be related to your autoimmunity.

panda2 profile image
panda2 in reply to Joy_1

Hey! Another swimmer!

Could this be something that some of us UCTD-ers might have in common? I am utterly convinced that swimming has been behind all of my good spells. When fatigue is threatening my whole day, I force myself to get to the pool because almost every time I have found that I've managed to fight it off with a good pounding up and down the pool. I like your 'pounding' description because it's exactly that!

Swimming only became a real problem over the last couple months for me when my lower lumbar spine seemed to be in a flare which then affected my groin too. But I used a float then and could still pound up and down with just my arms. And now the lumbar pain has more or less left again, so I'm back to normal in the pool. That's the other good thing about this disease -- things seem to come and go. So knowing they're going to go allows me to keep going.

Swim on all! Hope you made it in KayHimm...?

P x

KayHimm profile image
KayHimm in reply to panda2

Leaving now, Panda! You guys are truly a good influence on me. Actually have not been swimming but do my own HIIT walking (not very intense) walking on the treadmill — mini fan on the shelf — and am now working with a good trainer who has me doing mobility sticks and weights. He has been great about adjusting the exercises due to autonomic dysfunction. Will report back to you and Joy! 😀

panda2 profile image
panda2 in reply to KayHimm

Heeyyyy!!! You go girl! : )

Joy_1 profile image
Joy_1 in reply to KayHimm

Yaay! Enjoy your endorphin high!

Joy_1 profile image
Joy_1 in reply to panda2

Have to agree with you Panda. Pushing myself to hit the pool during a spell of fatigue lessens the fatigue.

Good to hear your lumbar issue has just about lifted and you are back to normal again. I find that when the balls of my feet are rather sore that a good 'jump up and down' at aqua works miracles. I certainly can't do star jumps etc on land. So it's 3 cheers to the pool from me!

Joy

Thank you to everyone for your responses. I didn’t expect to hear from so many of you.

I went to see my GP today and we went through my consultant’s letter together. When I asked him why he thought I’d been put in the UCTD box he gave me a useful analogy. He asked me to think about Irritable Bowel Syndrome.....there’s no test for IBS but the doctors know that the patient has stomach/gut problems. If no other diagnosis can be confirmed IBS is usually diagnosed.

In my case the consultant can see that there is a connective tissue disease but the tests don’t show which one so the diagnosis is Undifferentiated CTD.

The hydroxychloroquine is definitely working at the moment so fingers crossed that this medicine will continue to give me the pain relief I need to get myself back on track.

Thanks again for all your replies xxx

Pretty good analogy!

Yes, I like it! And really pleased to read of the positive results with the Hydroxy. That's a great sign!

P x

Misty, I did not know that about the CPR. It is all so complicated. That is hard to be reliant on the steroids. How do you feel on 7.5 mg? Take care of that foot! Being on crutches and the boot has to be depressing. Hoping you heal perfectly.

The autonomic dysfunction affects me in terms of orthostatic hypotension and GI dysmotility. I am in a good phase now after getting all sorts of weird nerve-related issues. I cannot tolerate heat or humidity as regulating body temperature is a function of the autonomic system. Last summer I was able to go out with a spray bottle and a mini fan. I do not take the subway five months out of the year because of the heat.

Joy1 and Panda on this form have me getting to the gym! Exercise is a challenge, but my doctors are adamant that I do it.

We will get you to New York! You have to choose the right time. As I said, I have a lot of travel tips.

😍🥰

Kay

misty14 profile image
misty14 in reply to KayHimm

Thanks for your great reply Kay. I'm thrilled this UCTD post has helped so many of you in different ways. Good luck with the gym and keep us posted. It must be hard adjusting with those autonomic problems but I guess you get used to it !. It's how we make the best of it.

Thanks for your lovely thoughts re boot and New York!.would be fab to meet you. I've been on 7.5 mg for 4 months and still don't feel well. The idea was to make me better and then do another reduction!Need to be down to 5 mg. I see my Rheumy on 19 th to see what they want to do!. I've looked at my papers explaining UCTD and in my new name including overlap syndromes apparently is wrong as its less defined than UCTD!. Thanks to these replies we've learnt a lot. Keep as well as possible and go girl at the gym. Xx

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