Undifferentiated connective tissue disease

[RieDe]

Hi, this is all new to me and I am unsure of where to turn. I have Raynauds and undifferentiated connective tissue disease; as in all the symptoms of limited scleroderma with a lupus rash but no blood work that can give me a diagnosis. I have also apparently developed fibromyalgia as well & have a list of medication that scares me to death. . I'm 31 with 2 little boys and up until a year ago was 100% well & doing what every other mum does, now I'm a shadow of my former self and although positive i'd like to know if anyone else is in the same 'boat' & where do you turn to for help...?

Thanks for reading.

[Shadows-walker]

Hi ,me to. Lost my job in July I tend to post on fibro site but I have sjorgrens ,raynaids , fibro ,chronic fatigue , reactive arthritist , had lupus antibiodys last august but rummie says not lupus also have bowel issues and hair loss , mouth ulcers and nose , can't cope with to much sun either ,also have great difficulty sleeping and I am now getting acid reflux and heart burn also my blood pressure is going up big time .

All came on very quickly 4 years ago but initially told reactive artherist but was hospitalised due to bacteria in my blood stream due to dental treatment could not walk for 5 weeks so week , was given steroids and methaterate then sulphradine then hydrochoquinne last august and felt better ,then my body decided it wasn't going to play any more and stopped in jan ,my heart and lungs decided they didn't want to work went off sick. in jan got told in April I had conective tissue desease then in May it was UCTD then in august changed it to MCTD now been told on lupus sight I should get a referral to Tommys in London ,I have to use a mobility scooter to take my dogs out but can only manage it about once a fortnight at moment as wrist hurt so much ,have difficulty driving as concentration isn't good have a £800 bike in shed ,can't use ,have para foil kites I wardrobe can't use ,dared the local vicar to absail down church tower for charity 4 months before this started was a size 10 / 12 now I don't dare think about it a am virtually house bound ,now it am 52 but I was really like a fit 30 year old before this ,it has totally changed my life , I am hoping to be put back on hydrochoquinne soon ,but I am waiting on a biopsy ,the rummie tells me he will get me fit again I can only hope ,I am so sorry this has hit you at such a young age at least my children have grown up , I must admit I don't know what scleroderma is I don't go looking for symptoms they just seem to keep finding me ,I was told that UCTD was the better one to have if that is any help ,but if you need a chat most of the time I am on the fibro site as they do talk about the serious stuff but they have fun to and as I live alone now ,I need some laughter in my life they also help with where to find help and are very good on disability issues , have you been in touch with social services for equipment round the house ? Do you need a home help ? Have you applied for PIP ? Please contact me anytime ,my GP is lovely tells me regularly to be gentle with myself ,I am going to a pain clinic at moment and where they are trying to get people to do more with me they are trying to get me to do less but get out more ,which is easier said than done ,

Good luck.

Christina (Chris) x

[Naylee]

Hi RieDe, sorry to hear your having a bad time. I have just joined the forums myself this week. I have been ill for a while 11 years but last 4 years have shown new symptoms. Only just seen a rheumy...got fybro and waiting for scan results from yesterday. Also think I have raynauds because my feet swell cold and blue. You are not alone...the fybromyalgia forum is really helping me answer some questions..you should check it out...I have been prescribed amytriptoline so far but havent started it yet...I feel I need to know what im taking, it can be very overwhelming. Im sure the forum members can answer your questions and help you. It must be really hard dealing with all this with 2 young children..the fact you say you are positive is great...thats how you need to stay, I wish you all the best luck and might see you around on the forums...take care big hugs xxxx

[Barnclown]

Hello riede

Glad you found us. Lots of solidarity here in this community forum

Have you found the lupus uk HU community forum too? There are many there still in the diagnostic process with connective tissue symptoms and neg blood work, but responding well to lupus treatments. You'll find lots of solidarity there regarding the diagnostic process etc

Take care, take heart: there is hope. My infant onset lupus diagnosis got lost and I spent most of my adult life coping with typical lupus symptoms but only getting treatment during crisis & for secondary conditions....and no doctors spotting the primary disease until 3+ years ago. I struggled through all that, progressively deteriorating all over my bod. But finally a tip top rheumy figured me out based on medical history & examination alone. Over the past 3+ years by trial & error, we've got me on meds that are helping so much that I feel better than I have since the 1970s......and I'm 60 this year.

Wishing you all the very best

[RieDe]

Thank you so much for sharing your stories and taking the time to reply. I spent around 6months thinking it was in my head so it is nice to read the voices of those suffering similar problems and makes me appreciate what I have when I see people suffering far more than me.

An early diagnosis and treatment plan is reassuring but I can't help worrying about the future. The GP and consultant have been fab and I think to be diagnosed (ish) and treat within 9months is pretty lucky!!! I was told I'd learn to manage my symptoms but I think that is easy to say!!!

I chose to give up work after my second child so luckily I don't have to hold down a job but I will need to start earning again soon once he starts nursery. My mobility is ok I guess, i struggle with my hands and fingers the most. I'm very stiff first thing, I can't stand for long periods, I struggle with my knees I.e bending, kneeling, climbing. The fibromyalgia means I have muscle pain in most places but hopefully that will go. I constantly have to wear sun cream which is very odd! Raynauds and scleroderma is a pain, particularly in winter but air con, freezers and rain (to name a few) cause me massive problems; I live in gloves and own every variation! Haha. I know nothing about benefits, i doubt i'd be entitled without a specific diagnosis and I have good and bad days.

I have also been prescribed amitriptyline, hydroxycholroquine as an immune system suppressant, nifedipine for the Raynauds and Omeprazole for the heartburn/reflux issues.

Has anyone tried Physio or other alternative therapies?

[Ibeldina]

I so feel for you I contracted this disease when I was 52 and had grown up, kids - I lost my kidney function and was on dialysis for 7 years until I had a kidney transplant on 19/7/04 and all seems to be ok at present but I have severely effected fingers - (ie not one of my ten fingers are straight) and I continually bump them, they become infected and I have to take a course of antibiotics.... good luck for the future and try to stay positive there is a lot of help out there - seek it out ...

[Mulhollandpoppy]

Hi there im 31 in March it is hard and frustrating people at my work think I'm moaning because I'm cold

They don't understand the symptoms and the slightest bit of air conditioning or draught sets me off I was diagnosed with this when I was 18 I have noticed in the past year it has got a lot worse I lost my dad 1 year ago today so could be due to the stress also as this can worsen the symptoms

The doctor has recently put me on nifidpine only a small dose 3 times a day but it gives me headaches keep warm use the products out there heated clothing silver gloves I've heard are good I'm gonna purchase some

[FromToronto]

Hi,

I know your post is 4 years old and you may never check it again, but we are so similar that I had to reply!

I'm a 36-year-old mother of 4 and I first started experiencing symptoms when I was 28 and pregnant with my third child. I was diagnosed with UCTD when she was about 9 months old after seeing all sorts of specialists and having all sorts of tests that showed nothing. My symptoms were severe heartburn, Raynauds, muscle/joint/everything pain, digestive system problems, fatigue, and strange neurological symptoms from tingling and numbness to blurry vision to dizziness. I have a positive ANA and Rheumatoid Factor (but don't seem to have RA) and sometimes low complement levels (but don't seem to have lupus). My symptoms pointed more towards limited scleroderma, as I also had some changes to my nails that were suggestive of SSc (abnormal nailfold capillaries) plus the terrible heartburn and Raynauds.

Despite that, I've struggled to get good treatment. My first rheumatologist was unsure about how to treat me and talked more about fibro than the UCTD. She prescribed a PPI and a calcium channel blocker to minimize symptoms of GERD and Raynauds, but that was all. I also tried Pregabalin for pain/Neuro synptoms, but it had no effect. I wasn't put on Plaquenil for about 2 years, but it ended up being my miracle drug! I also took Amitriptyline, which helped.

I had 5 years with next to no symptoms after Plaquenil had built up enough in my system to work. Amazing! We even decided to have a fourth child and I made it through pregnancy and the postpartum period with no symptoms.

It's a long story, but I stopped taking Plaquenil last winter. After 6 months off of it, my symptoms all returned with a vengeance. It was awful. I was barely able to take care of my kids. I went back on Plaquenil and within a few months I began to feel better. That was 6 months ago and I'm now almost back to normal.

Anyway, I really empathize with you dealing with these conditions while raising kids. I hope you've found medications that work for you (or a diet or lifestyle changes that have helped). If you ever want to talk, feel free to send me a message.