Hi guys hope hope your all well x
My neck has been a massive factor since this all started. My neck feels so weak and muscles are right neurologist said inflamed It’s at the back of my neck around my jaw eyes and throat and shoulders it has been noted by doctor Cruz I have a degree of muscle weakness
it’s most uncomfortable
Anyone else ? Please any tips advise xxx
Some days I can’t lift my head up . I can’t determine whether is due to weakness or pain. Everything hurts at the minute, but I’m really focusing on winning this battle 🥳x
I’m with you on that Lisa xxx
I am really struggling with this for the last few months. My neck feels like it can't hold my head up some days and it hurts along with a horrible headache all the time. And at night if I lie too long on one side, either my jaw or shoulder feel like they have been knocked out of place. As I don't have a diagnosis all the GP can do is give me stronger painkillers (one etoricoxib/arcoxia a day) which isn't helping much. I had just picked up my phone to call for a physio appointment when I saw your post! I'm not sure they can help much. But as I am stuck in limbo waiting for some/any answers as to why I feel so awful, I'm going to try physio, as I am in tears many days with this (and I am not someone who cries easily!) Sorry not much help but hopefully I'll get some answers or at least practical help from the physio and I'll let you know what they say. Xx
Hi salzer
Sorry to hear your have this as well it so so uncomfortable I do get headaches too and yes I feel as if my head is to Heavy for my neck like it’s been pushed down I also have problems with my shoulders and jaw.
What’s your vision like mine can be hard to focus.
Have you been looked at for uctd ?
Please do let me know what they say xxx
I do have vision symptoms - not blurred or vision loss - it's almost as if my eyes 'slow down' especially my peripheral vision, sounds weird I know but it's one of the first indicators for me that I'm going into a bad phase again.
I've been fobbed off by two rheumatologists now as I don't have the 'right' blood results, but following advice from the lovely people here, I've got an appointment booked with Dr dCruz in August, so just have to hang on til then and hope he can shed some light on things.
I always think my strange symptoms are just me, and then I come to this forum and always find others going through the same. Which is comforting but also sad to think of how many others are struggling 🙁
I'll let you know if I get any useful tips from physio on Wednesday. At this stage I'll try anything!
Xx
I ended up with D Cruz thanx to this site. In my mind I said to myself if he can’t help me then no one can .
Best money ever. Medication is very slow pace but I have faith they know what they are doing xx
Thanks Lisalou. That's what I'm hoping. And if he thinks it isn't a CTD type thing hopefully he'll point me in the right direction to get some answers elsewhere.
That’s the mindset I went with.
As long as you have an open mind what ever the outcome you won’t feel disappointed.
Do prepare yourself, a time line, photos, get a copy of all your bloods from your gp to take with you. He really does listen and acknowledges all your previous bloods. All mine were negative up until seeing him and now the tables are turning to get me the help I need. There is light at the end of your tunnel xx
Why have I only just seen this ❤️I get the same vision wise slows down
How are you getting on !! Xx
Tee hee. Wow just reading this and it seems like so long ago!! I'm ok. Still just on hydroxy and anti inflammatories. Had the UCTD diagnosis confirmed by a clinic here in January and they upped the hydroxy to 400 for 2 months, going back on 300 from next week. It's definitely helped but if this is as good as it gets I'd be gutted. Still very limited in what I can do and still feel like I've been run over by a bus every morning. But hey ho! How are you? Any further in getting to the bottom of the Jade mystery? Xx
I read through my old posts as the same issues come up with me my neck is so annoying little better but I’m on steroids but I’m sure they are fake 🤦🏼♀️😂
I feel okay 👌 ish I know what you mean I want to feel normal again too but I’m on steroids and still feel off not myself breathless at times for no reason pressure in my face jittery 😬 hoping that disappears when I stop the steroids !
My neurologist is still saying uctd which I’m okay with I reckon he’s right I’m hoping he is anyway !
I have a massive lack of trust with doctors which doesn’t help !
Be mindful of your eyes I went on 400 mg for about a week and I had eye issues I’m back on 200mg so just get your eyes checked !
Also I have found b12 shots to be helpful just a thought !
I feel so unhealthy on steroids horrible taste in my mouth and eating like a pig 🐷 gained a stone in weight and I have moon face all within 4 half weeks 🤦🏼♀️
I can’t wait to come off them my skin has broken out I feel so not myself.
My way of dealing with things is to do my makeup and look nice ish😂 I’m struggling like I don’t have my mask on 🙇♀️❤️❤️❤️
Aw that sounds rotten ☹ You'll be glad to get off them, especially if you don't even think they're helping. I get that pressure on one side of my face too but no steroids! I did get my eyes checked a few weeks ago and all good thankfully, well apart from bone dry🤣 How much longer are you on the steroids? Xx
Mine are bone dry too we have a lot in common !
They help ish but it’s a weird type to f help like I can keep going now but I don’t feel better but I have more energy! Makes sense wired is the word.
1 half weeks left ! Xx
I am not sure what type of problems exactly you are experiencing, but when I have trouble with my neck and shoulders and my head will feel heavy – my whole body will feel heavy when I am in Lupus flares.
One thing I have found it does help me is a deep tissue Massage that can stimulate the nerves the muscle and loosen the fascia, and that can work on the head and neck muscles to get the blood flowing better in those areas so that I can regain control.
This is one thing that could possibly help until you get a better diagnosis – it makes a big difference for me and also a chiropractor has help me with TMJ and jaw problems that I had in the past with lupus.
That's great advice. Thanks so much. I'd never heard of TMJ before! I'll see if physio can suggest anything and if not I'll go back to my old osteopath from years ago. I hadn't even thought of that.
I have tmj according to my dentist xx
UCTD/Lupus Muscle Weakness and Bone Pain
Weak, achey muscles. 
Sudden Weakness, Headache, stiff neck, grey skin - colour just gone from my face :-(
does anyone suffer with leg muscles that feel weak as though you've just climbed a mountain?
ulcers and inflammed gums 
