Good evening everyone. Requiring a bit of advice please since hospitals and GPs are a bit busy right now.
Been diagnosed for 3 years now with CNS Lupus. I get chronic pain down the right hand side of my body. I have been fortunate because my symptoms have remained the same, which is the pain.
The last 3 months I have been bothered by light sensitivity and also pain in my knees. They both crunch loudly when I walked up stairs and super sore if I need to kneel down. My strength is deteriorating eg can't open a jar kind of thing.
Could this just be me getting older with parts of my body deteriorating? Or could it be Lupus related? Do I bother the Dr? I'm only 46 and was fit pre Lupus but now I walk mainly, do indoor bike and yoga.
Thoughts?
Many thanks.
Written by
ange726
To view profiles and participate in discussions please or .
These symptoms are exactly what I experienced before I was diagnosed with lupus- couldn't lift a kettle, open a jar, etc and I struggled to climb the stairs due to pain and fatigue. At one point I was going up the stairs one step at a time sitting on my bottom!
The symptoms have much improved since I had the initial treatment with Rituximab and Cyclophoshamide to help my kidney function but my joint pain started to flare up a little again and the consultant started Hydroxychloroquine which has made a big difference and I feel so much better now. I still have niggles and the occasional creaks as I climb the stairs but at least I don't doubt whether I'll make it to the top or not!
You dont say anything about whether you take any medication but I feel like it definitely helped me to stop feeling like an old woman before my time. Hope this is useful information and good luck x
Many thanks for getting back to me. I am currently on hydroxychloroquine, mycophenalate immunosupressant, tapentadol for pain relief, nortryptline for night pain and vitamin D. I have been in them for 3+ years with prednisone sporadically.
Its lovely to read you are doing reasonably well. I may just need to get my meds tweaked!!
Hi, lupus can take many forms in different people and keeping a diary for yourself, particularly when we are unable to access our doctors so easily , is a good idea. It helps you to see any patterns.
There are things like fatigue, generalised pain, intolerance to light, headaches etc joint, muscles pain may come and go or in some stay, with or without inflammation or swelling.
As for the knees, this could be part of the Lupus reaction or a cartilage or ligament issue, particularly if you cycle. It is always difficult to know what it is a reoccurring part of a flare and what is "age" or another condition. That's where I find a diary helps. Then you see if the knee etc comes with the other problems and then dies down.
Trial and error is another. Try stopping cycling for a while and see if the your knees improve alittle. I know that at the weekend in a fit of lockdown madness I helped my husband dig. The result was a bit of happiness but yesterday a no weight bearing right knee. (spade knee).
No swelling, no redness just a crowbar under my knee cap.
Many thanks for your response and super helpful advice. I have tried on several occasions to do a diary, however, with my lupus brain fog, I keep forgetting. But it makes sense to keep on trying to do one.
You are so right that it could be a number of things and good idea to stop cycling to see if it goes. I am keeping up Yoga because i know we need to keep our body as strong as possible. I just do everything much slower these days!
I’m only 35. Since my SLE diagnosis, my joints crack all the time. And definitely moreso than ever. My fingers, shoulders, wrists, knees, ankles, elbows and neck all crack. They crack so loudly, it’d make a room go silent with people wondering what they just heard. I’ve had MRI of hands and wrists but no inflammation. I don’t have much pain other than a little stiffness so I don’t bother doc about it. I still work out everyday - row and bike.
Along with pains and swelling this was one of my first symptoms when everything flared up, was cracking creaking everywhere , so out of the blue as never had before except for odd knee crack. Now when periods of pains get a bit of cracking but first time appeared was very noticeable and heard by others in the room.
I did mention to rheumatologist at the time as relevant to what else I was experiencing and had never had happen before, she said everyone gets cracking, I said yes they do but I have mentioned it as seems relevant with flare of things and happening all over and new to me. Needless to say she just looked at me like I was stupid.
Strangely though I get swellings and or pains of areas cracking happened and visible tiny veins in fingers now 🤷♀️
Worth mentioning if you have a good doc but be prepared to be made feel stupid if not.
Sorry for the delay in replying. Thank you for good advice. Im reading your message and nodding away because I think all lupus sufferers have gone through the same or similar.
Yes a flare up definitely brings up weird and wacky symptoms at the best of times and i have had the same experience as you before, when you tell a Dr your symptoms and they just nod and smile but ignore what you have just said. Its so frustrating when all we want is an acknowledgement and understanding and an explanation if at all possible. However as lupus is such a complex beast I appreciate how difficult it must be to help.
I feat that as time goes on and we are all still stuck at home we are going to find more and more things happening with our illness and non related illnesses. Im normally running around the place and don't sit down much (I suffer for it but it keeps me active) but it keeps my mind occupied from things other than lupus. I remember Prof D'Cruz said to me to never stop being active because it would be detrimental to my health. Im now keeping a note of things to bring up to the Dr the next time I can see or speak to one but I know its not serious, so no urgency to get at appt.
I hope you are keeping well and not suffering too much.
Thank you so much for replying. It does help when you have a community that gets it!
I am super impressed with your rowing and cycle daily. You have incredible motivation which I admire. I am fully aware that if even if you feel sore and stiff, that keeping active, is key.
Crunchy knee joints are very common in the wider population and not necessarily lupus related, it is a condition known as crepitus. It is not generally a cause of concern and you should keep exercising the knee as much as possible, which goes against the natural reaction to stop. It can be associated with cartilage damage, or osteoarthritis. I had it as well as some knee pain and was referred to physio, which improved the strength of the muscles that surround the knee joint. I no longer have knee pain or scrunching. I did have an x ray and do have very slight osteoarthritis. I don't have lupus but I do have scleroderma.
Many thanks for your response and very happy to read that after physio you no longer have pain.
You are so right about keeping active although easier said than done at times!! I will contact my gp when everything calms down and in the meantime carry on as normal!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Lupus aches pains confused 
Discoid lupus
Is this lupus?
Hypothyroidism and lupus
tomatoes and lupus flare?
