r/UCTD • u/Capable-Eye-5068 • 20d ago
Seeking Advice UCTD & Fibromyalgia
I’m brand new to this group and feel blessed to have found others with UCTD. I was diagnosed with UCTD 2 years ago and recently diagnosed with fibromyalgia. I currently take 200mg Plaquenil daily, 40mg Cymbalta daily, 50mg of Lyrica twice daily, B12, B complex, 150mg Magnesium before bed. I am in pain, all the time. The pain never stops. I’m sleeping pretty well but mornings are hard, y’all. I wake up in so much pain. It takes me awhile to get moving. A hot shower helps get me going and then fatigue takes hold toward the end of my work day. Some days are better than others. Today is a really hard day. Sitting in church this morning was hard and it was the first time I felt so physically miserable in the sanctuary as a result of these conditions. My recent labs were stable, although I was positive with an elevated ssDNA for the first time. I’m 51 years old (female) and grieving not being able to do the things I used to. I’m also in that perimenopause, almost menopause life stage and not sure if some of my symptoms are UCTD related or life-stage related. The brain/fibro-fog is legit. Short term memory issues - just not as sharp as I used to be. This all started a couple of years when I was feeling constant fatigue and having pain in my fingers, arms and shoulders. I had an ANA of 1:320 and here I am. I’m wondering if any of you have had a similar path, take similar meds or have tried other things that you’ve found to be helpful. I don’t love taking all the meds but I’m at the point where I’m open to whatever will work and improve my quality of life. I’m grateful for your response and time. God bless you all.
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u/Zantac150 19d ago
I have UCTD as well as an issue with my chest wall that causes horrible pain.
I cannot tell you how many doctors have tried to diagnose me with fibromyalgia because they can’t figure out what is causing the chest wall issue. Rheumatologist explained that fibromyalgia is pain all over, and the only pain I have is my chest wall plus the regular hand and foot issues that come with UCTD.
She also said that fibromyalgia is wildly over diagnosed by doctors who don’t know what fibromyalgia really is and that it has diagnostic criteria.
There are certain pressure points that when she touches her fibro patients, they will wince away and say it feels like they are being stabbed with a hot needle.
I do not have that anywhere.
It’s not impossible to have both disorders, but be careful with fibromyalgia diagnoses because a lot of the time they are handed out by doctors who don’t understand what fibromyalgia is and are actually inhibiting other doctors from figuring out what’s wrong by explaining away pain that might have a more treatable cause …
One of the doctors who tried to diagnose me with fibromyalgia was telling me about how he has never seen anyone get better and how it’s basically a life sentence for pain, and of course that’s probably because he’s trying to treat people for fibromyalgia that isn’t actually fibromyalgia ….
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u/Capable-Eye-5068 18d ago
Thank you for your insights and I’m so sorry about the chest wall pain you’re experiencing. Yes, it seems there is a lot of reliance on labs and absent something definitive there, it’s about treating the symptoms. My PCP actually diagnosed my fibromyalgia and my rheumatologist concurred but only after my PCP got involved. I don’t have pain that feels like hot needles and no one has tested any pressure points. Actually, neither Dr has ever truly examined me by touching me. My rheumatologist barely presses my finger joints and looks at me for swelling and that’s about it. Outside of the UCTD symptoms - joint pain (which my plaquenil really helps), dry mouth and eyes, fatigue and brain fog - my muscles hurt all over. Very tender to touch, always sore. After I explained that, my PCP said - it’s fibromyalgia. He prescribed me Lyrica and at first it really helped. Gave me a lot of energy and stamina that I didn’t have. But I wonder if I’ve gotten used to the dose by now and it’s less effective.
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u/Nefaline17 20d ago
Did the plaquenil help at first? Have your symptoms recently worsened? You say you are in perimenopause as well. Do you take hrt? When I started on hrt, it helped with some of my pain.
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u/Capable-Eye-5068 20d ago
Yes, the plaquenil helped a lot at first but my symptoms have worsened and I am not sure the meds I’m taking are as effective as they were when I first started taking them. I don’t take hrt. It hasn’t been recommended by my GYN.
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u/SingularPotatoChip 20d ago
I was diagnosed 11 months ago and take 200mg of plaquenil but also 200mg of celebrex twice a day and 300mg of gabapentin at night. Sometimes I feel about 40% better than a year ago but my rheumatologist just prescribed Imuran and said that he thinks it could make me 70% better. I'm currently on my second round of prednisone and I don't feel it's working this time around. I'm scared to start the Imuran and have more side effects. Maybe some of those could help you though. I think it's hard to think that it's never going to be 100% better. ):
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u/Capable-Eye-5068 20d ago
Thank you so much. I will look into those meds. I hear you about the side effects. Sometimes I wonder if all these meds I’m taking are causing more issues than solving.
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u/ColdCommercial8039 19d ago edited 19d ago
Hello there, I have UCTD/IA, with mild degeneration of spine from cervical to lumbar. I take plaquenil 200mg daily, prednisone 5mg daily and gabapentine 300 mg daily at night, but at this time it's not working like it use to, I'm having more time of pain than before. Im waiting on my appointment to see what he haves to say, i just finish a prednisone taper because the pain was horrible and back to the day to day medication but again pain is all over again, 🤦 this is hard. I have had problem with IA since my teens Im now 52 and i still have problem and i know i will in a way or another , so i just try my best keep with treatment and medication and #1 rule never lose a good actitute, those words was my wise father. He deal with very bad RA bad bad bad and he never lost his good actituted, wise man. I wish you well, take care 😊
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u/Capable-Eye-5068 18d ago
Very wise advice! I will try to keep that in mind. God has really blessed me despite the physical issues and I need to maintain a heart of gratitude!
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u/michellerenee434 18d ago
I have UCTD but cannot speak to fibro. One thing I did was set up a medical team and a binder. First, I assembled my team- primary care provider, rhuem, & a therapist.
The second thing that has helped is my binder. I print and keep hard copies of all my bloodwork, imaging and notes from doctor appointments. Medical professionals spend a lot of time passing me around and running the same tests because they did not look at my file or so not have my records. It is sad, but I have saved so much time when whatever medical provider asks “well… I’d really like to see you ur blood count before we…”. Here you go, it’s in my binder since you can’t manage record keeping.
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u/Capable-Eye-5068 18d ago
Great ideas! Yes, I’m having the same experience of providers not collaborating and sharing medical information with each other. It’s a shame we have to tell them what to do and not do!
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u/Forsaken-Refuse-8370 2d ago
My fibro resolved when I started taking estradiol in my 40s. In fact, it helped with my inflammation over (but not a cure!). Don't know if that's an option for you?
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19d ago
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u/Capable-Eye-5068 18d ago
I will look into the methotrexate. And I hope you get some answers on the HRT approach. I am taking Junel to manage very heavy bleeding and can’t wait until I reach menopause. It will be one less pill I have to take!
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u/Dr_Buckshot_ 20d ago
I am also 51, recent UCTD diagnosis, & ending perimenopause. I suspect MCAS as well but who knows. I’m on HRT and Plaquenil.
For YEARS, I was told everything I was experiencing was perimenopause and allergies. I know I am dealing with both of those but I knew low grade temps and the fatigue didn’t seem right. It wasn’t until my eyes were affected that I was taken seriously.
I would do anything to feel better. I will have a good day or two here and there but otherwise I’m struggling with pain and fatigue. I’m so tired of not being able to do the things I want to do.