I hope everyone is well. The past couple of week I have had excruciating pain in both wrists, I can barely open my fingers fully, I can’t open a drinks bottle without tears its horrid! I spoke to my GP & like always the response is ‘it’s probably Lupus related’ but as I have a renal specialist my GP normally fobs me off with this.
I haven’t had a face to face appointment with my renal team since the initial lockdown. I haven’t had bloods or a urine test done either.
Its quite depressing & most morning I’m waking up in tears. It’s got my mood so low I barely come out of bed.
Has anyone any suggestions? Has anyone experienced this?
Any information is appreciated.
My lupus isn't affecting any internal organs but I do get a lot of pain and stiffness in my hands and wrists. My rheumatologist eventually sent me for an ultrasound scan, which clearly showed inflammatory arthritis (red spots on the scan). He has increased my dose of hydroxychloroquine and I'm still waiting for blood test results. It is all a long, extremely frustrating business.I have seen a physiotherapist who really helped with some manipulation and showing me some gentle stretching exercises to do every day. That might help you (I did see one privately). I think the best thing is to keep them moving if you possibly can.
Also you can get gadgets to help you open jam jars and bottle tops etc (Good Grips make them, but I presume there are others).
I'm shocked that you've not had any blood or urine tests done recently - please do chase that up. Having said that I haven't had a urine test for about 3 years, whereas I used to get them everytime I had an outpatient appointment. Covid has really messed up care for lupus patients - I think we have to fight for the care we need. (And that's hard when we're struggling). Hope that helps a bit.
Hey Marypw, Thank you for that. My GP asked me today if I had seen a Rheumatologist, never heard of them so I’m going try to & refer myself. It sounds like Arthritis tbf I’m just really worried.
Thank you for the recommendation of Good Grips ill have a nosey xx
Doesnt have to be arthritis. I have pain like you but it is not arthritis, meaning my fingers will not go awry in the future.
Do you know what is causing your pain?
Lupus inflammation. The difference from arthritis is that arthritis can attack and destroy joints, but in my case it only causes pain with no joint damage.
Oh right! Thats very interesting. Thank you so much for sharing. I have been so so worried I have arthritis. Imma get onto my GP x
Your GP is the one who should refer you to see a Rheumatologist, so please ask him to do so ASAP.
Most people with lupus have Arthritic like pain, my Rheumy said it's called Palindromic Rheumatism. I often get this at different times in the hips, groin, fingers, back, neck almost every join but thank God not all together.
Honestly since being diagnosed with Lupus my GP has been terrible! I live right next door to them & have to travel 30+ mins just to get a blood test as they refuse to do it!
I have all the same areas of pain also so I will deffo be more aggressive with my GP to refer me to Rheumy x
It's a bit strange for a GP to treat lupus. If I was you I would change the GP.
Believe me hun I have been trying for years I just always find ones that are worse than my current one 💆🏾♀️
I hear you. Unfortunately it isn't surprising