The main characteristic of my major flares seems to be weakness and heaviness of my limbs, to the point that all my movements and walking pace slow down to the speed of a 90 year old (I'm 35). It's an effort to stay standing up or walk further than my kitchen.
Does anyone else get this?
I have UCTD plus some other autoimmune stuff. Rheumy is helpful and I'm on hydroxychloroquine, pregabalin, plus occasional steroid injections for these major flares (they do work), but I'm yet to understand what causes these or find anyone else that experiences this! It's such a strange symptom and really hard to explain to doctors, but it's actually the most disabling part of the disease as it means I struggle to leave the house
Thanks in advance!
Lucy
Written by
LuckyJC
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I have uctd too, honestly I think uctd is just the start of lupus with no positive blood tests to fully show lupus... I seem to be getting flare after flare constantly and when I do I have weakness in my arms An legs just like yourself, mainly from knees down which comes with tingling too
I agree, I've always thought it is lupus but without dsdna antibodies my rheumy won't hear of it...kind of glad to hear that someone else gets this same symptom, though sorry as well! Have you found any way to treat it? The only thing that works for me is the steroid injection but I'm trying to keep those for the worst and longest flares
No nothing at all unfortunately I just have to deal with it. I had one steroid injection which made my bones hurt then was on hydroxychloroquine which I had allergic reaction to and now iv just been left since November, I know have a kidney infection my body is not agreeing to no anti biotics my rhumy isn't getting back in contact with me
After reading your comments I had to chime in. I live in the states so I don't know how the medical system works for you guys. But if you look up lupus.org you will see that some of us have negative antibodies but still have lupus. It's kind of a old school theory that you can't have lupus with out a positive ANA. I also know many people with lupus who will sometimes have it come back positive and sometimes negative depending upon what their body is doing at the moment. For me the first rheumatologist I saw said it sounds like you have lupus but your ANA isn't positive so it can't be or is just starting. I continued to get worse, so my dr sent me to a more experienced rheumie who said yes you can have lupus without a positive ANA but it is rare. He diagnosed me with a lupus like syndrome but didn't listen enough to treat me aggressively enough, and then retired. So then my GP along with her supervising physician treated me under the advisement of our large state hospitals rheumatology department, who also agreed that I have sero negative SLE plus other diagnosis that have not been identified yet. During this time they researched to find the right rheumatologist for me and when I went to him he also diagnosed me with sero negative lupus as well as uctd. He started me on Benlysta infusions, which I have to say helped slow down my disease progression. For me because of the unknown overlapping diagnosis, my case is strange and severe. It's extremely hard to control and now I always have disease activity. All my meds and treatments just keep it from being as horrible as it was and progressing as quickly as it did. I'm currently on benlysta infusions once a month, weekly methotrexate injections, prednisone, hydroxy, Celebrex. Those are the main things that control the disease and then I have some other ones to treat some of the symptoms. But my entire point is, just because your ANA is negative doesn't mean that you can't have lupus. The lupus website even gives out that information. You just have to find the right specialist who has studied the more recent information and will treat based off of side effects and not serology. Serology is very unreliable. For example 50% of people with RA will not test positive for it, making them sero negative too. A lot of auto immune conditions are that way, that's why we suffer for so long without diagnosis and so many are told they are fine when they are in the beginning stages of the disease. For me I have had symptoms my entire life but had no idea anything was wrong until the symptoms became so bad I couldn't function anymore and you could see the physical evidence. Thru all this I have never had a positive ANA, but I have all the physical symptoms that only respond to my biological infusions and chemo injections. I don't know if benlysta is available to you or how hard it would be to find a rheumi who uses it, but i know other ladies with less severe cases that he infusions have completely given them their lives back. Sorry for such a long post, I don't know how else or get the info out their. We've been on this journey for a long time and have done a lot of research. My medical team I have now is wonderful and so knowledgeable about all this but it took a long time to find them, and I got very sick seeing other specialist who didn't know what to do with me in the process. There is very little know about auto immune conditions and their causes so there are still a lot of questions and mysteries involved. I saw rheumies who acted like they knew everything and none of them helped me. The one I have now is the most honest I've found and he tells the truth that rheumatologist don't know half of what there is to know about these conditions, so how can they say something isn't possible when there is still so much research to be done. Hope you can get some answers. The infusions and injections help take the weakness away, I can always tell when they have worn off because the struggle to move comes back.
I have exactly the same weakness in the legs at every flare. I have negative bloods too and am on regular steroid injections plus oral as well. I couldn't take the hydroxichloroquine either.
The weakness in the legs is awful and sometimes spreads to the hands arms , face and jaw muscles, also swallowing. Doctors just look blank!!
I have had a couple of scans looking for MS but thankfully it isn't that.
I also get numbness on the soles of my feet and tingling up to my knees.
I am sure it is just another sign of my mystery autoimmune disease!!
it may be worth getting your health professionals to check your CK levels when you next do your blood tests in the first instance, I was properly diagnosed after a biopsy which confirmed muscle weakness
I have this weakness in all four limbs all the time now - especially when I'm resting when it seems to almost paralyse me - until I am forced to move about and break the spell. I've had it for six years getting slowly worse - was originally diagnosed and treated for RA. My arms are the worst - I could barely keep my arm raised for blood test the other day.
I have lip biopsy confirmed. Sjögren's - probably primary. Weakness of limbs is listed as a symptom. Nerve conduction studies showed up normal so not myositis in my case. It's probably my worst symptom and it's Is progressing despite ten weeks on Mycophenolate. No idea what's going on although I do have high ESR all of the time and CRP is usually raised too.
I don't know what is wrong with me, but I too have the weakness in my arms and legs with no matter what I do!! I thought it was from a back injury, but that shouldn't effect my arms!!! Good luck
I get this all the time since my lupus has taken a turn for the worse. Right now I'm due for my infusion and with it feeling worn off, it takes everything I've got to get from the bedroom to my couch and back. For example tonight it was so much effort, my arms and legs will feel so heavy and week, and then the shortness of breath will be so bad that I have to sit and rest for a few before I can even stand up to brush my teeth. The same thing happens when I'm flaring when I take a shower. Sometimes I have to use a shower stool as I just can't remain standing and it feels like I'm moving my arms and legs thru mud. I believe this is just a severe lack of energy because our bodies are so busy fighting themselves that we just don't physically have energy for the most basic of tasks. I hope this helps a little bit. Hang in there I know how terrible it is. I can't do any of the household things I used to because of this fatigue and weakness and I now need a wheelchair when I do go out, which is only for my drs and treatments. My dysautonomia causes the breathing issues. I hate lupus. Before it progressed to this level I was a very active young woman who worked, and did everything else on my off time. Now I'm lucky to just get my most basic needs done each day. I'm only 31 so I know what you mean about feeling so very old, but in my mind I still think I'm the person I used to be.
I have all the aches in my limbs and back. I can't be bothered to do anything. I drove 15 miles to meet a friend for lunch today, drove back and feel exhausted. I have no energy or strength to do anything.
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