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Discussion Starter · #1 ·
I was diagnosed with Systematic Lupus Erythematosis 3 years ago. At the time I only suffered from a malar rash which responded to Planquenil. Now the Lupus is affecting my joints and the malar rash has reappeared and the Planquenil doesn't seem to be clearing it up this time.

My knees became so painfull and swollen that I couldn't walk for a day. This came completely out of the blue. I woke up that way.

I was referred to a Rhumatologist who gave me steroid injections which has made a big difference although there is still some tenderness and pain.

I was also recently diagnosed with neck arthritis for which I will begin phisio soon.

I am not suffering nearly as badly as many on this site, I have a little pain and my neck clicks when I move it. I guess I am worried that this will get worse. I had no real issues for 2 years and this last year various bits and bobs have become swollen and sore.

Anyway, I hope by reading posts on this site I can become a bit more informed. The Doctors and Consultants always seem a bit rushed and want "to wait and see". I suppose thats the thing with Lupus you just have to take each day as it comes.

Thanks for reading my post.
 

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neck clicking

hi ffiona
just read your post and i have to ask about your neck clicking, i put a post on here the other day saying that when i moved my neck it was like the sensation you get in your mouth when you eat space dust, (sugary stuff that sounds/feels like little cracks in your mouth) do you know what i mean
i wondered if its the same, i am actually off work at the moment with a back injury, so not doing much has really made me feel all my joint aching
best wishes
betty
 

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hi betty i have this too in my neck! its like that crunching /popping noise before the joint clicks if that makes sense with me - i am still waiting to see a rheumatologist (not seen one yet - so no actual diagnosis, although lots of people/Dr's are pointing to it without actually saying that it is).
something new happens to me every day at the moment as i am taking no medication - except dr told me to take paracetamol.

would be interested to know if it is a similar problem also.

thanks

chelle
 

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Discussion Starter · #4 ·
Neck Arthritis

Hi,

Cervical Spondilitis is advanced wear and tear in the bones in your neck. Mine is quite advanced for my age (42). The doctor doesn't know if its Lupus related. Everyone gets some degeneration as they get older. Its a crackling sound I hear when I move my neck. (like space dust) Occasionally it can be very painful and I can't move my neck. I get Dicoflex to help with the pain and was warned off neck collars and to move my neck as much as possible.

A simple X Ray can confirm this. You need to watch out for signs of nerve damage: e.g. Numbness, tingling in hands and fingers.

If you think you may have this it's probably worth visiting your G.P. Physio will help strengthen your neck muscles and thus help aleviate the symptoms.

My Rheumy told me not to worry about it. Do the the physio, it may not get any worse and where necessary take anti inflammtories and pain killers.

Good luck xxx
 

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hi everyone, i have the same feeling in my fingers, all my fingers click when i bend them and it feels like my joints have dislodged:( (if you understand what i mean???:rolleyes: and at the minute for the last week i have had a clicking in my groin which kinda hurts, dunno if its lupus related though.

take care everyone

kerry
 

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space dust in my neck

hi everyone
thanks for letting me know you also have this going on in your neck, as i am off work with a back injury i just thought it was due to that, but since i have been off i have really been "intune" with my body and had time to really notice how my joints hurt all the time
as i have not been diagnosed yet i am keeping a diary of symptons i shall add this to my list
thanks everyone
betty
 

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Hi ffiona,

My daughter is 13 and she has been a lupus sufferer since she was 5. She has been very sick over the past few years but thankfully now she seems to be doing great. She suffered from low platelets, skin rash, joint & muscle pain, kidney problems, hair loss etc. Initially she was just put on course of steroids but over time she disimproved and has since been on cyclophosphamide, bp tablets, plaquinel and cellcept. Cellcept has worked great for her and she really hasn't looked back since she was put on it. She is still on steroids but on a very low dose. Maybe your doctor should be looking into something like this.

Shar1823
 
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