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.
Thanks
Keá x
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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
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.
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
This sounds like some kind of autoimmune, inflammatory condition which is related to lupus. Wasn’t diagnosed with lupus at the time but I can tell u about “trigger finger”.
Now I have SLE and DLE plus lupus nephritis.
I get frequently painful and stiff joints in shoulders and fingers can sometimes lock aka trigger finger. Once it was so bad I needed a steroid injection very carefully into the tendon. First A&E doctor couldn’t do it, “beyond her skill set”! I suppose she didn’t want to accidentally damage any nerves.😳
Luckily my exceptional GP on that occasion gave me one and within a few hours that locked finger freed up. But I had to wait a whole week for that appt.👆
I do finger exercises to keep finger joints moving. Don’t want that happening again. Scary.
Did your trigger finger go after the steroid in your hand? I had one recently about a week ago. I’m still getting it locking but it’s not as painful the consultant had to do it via a guided ultrasound. He said it was quite bad so hoped it would help.
I also do finger exercises and keep mobile, I’ve got SLE and Sjögren's.
Hi,In the week I was waiting for the steroid injection the A&E doctor referred me to a somewhat aggressive foreign male orthopaedic surgeon who said,
“ I need to make an incision into the tendon sheath so that the tendon has space to move…etc”.
Otherwise the problem will persist .
He gave me 1/2 hour to think about! I just couldn’t. As a pianist I couldn’t bear the thought of him cutting into my hand and possibly damaging tiny nerves in the hand. Said no thanks.😩😱
GP steroid injection, well worth the wait, improved it really well.
No locking but occasional stiffness. I’m on 5mg Prednisolone/2 days plus my special finger exercises and 100% tea tree oil massage helps damping down the inflammation both in the capillaries, tendons and muscles. No more locked fingers or thumbs at the moment. Finger’s 🤞.
I would not go for any hand surgery at all. However I’m aware that some medics in orthopaedics will go for “unlocking” the joint by bending the joint forcefully into position after a local anaesthetic . Too scary for me. Hence prevention is so important!
You’re certainly doing all the right things but with lupus being so unpredictable one has always got to think about damping down the inflammation. I personally avoid Ibubrofen because of my lupus nephritis.🙈
I had bilateral wrist pain. I also experienced pain while trying to grip or hold items. I couldn't even hold a small water bottle while walking. I went to a Neurologist who did a nerve conductivity test. He thought it was carpel tunnel and gave me wrist splints to sleep in.
I also went to my rheumatologist at the Mayo Clinic. He said this was part of my Undifferentiated Connective Tissue Disease and prescribed hydroxychloroquine. Withing 90 days the pain subsided and has not returned.
It sounds to me like I need to start seeing a Rheumatologist. Is Undifferentiated Connective Tissue Disease linked with Lupus? I’ve never heard of this. Has the pain completely gone for you now or does it come & go?
Hey, dear.... Definitely this is Lupus related,as per my experience. These has been my initial symptoms before I got diagnosed with SLE with nephritis. Apart from medication, protecting myself from cold has been a must, what I guess is difficult for you bcoz of being in Europe. Plus regular workout as per my capability had really helped me cope up with these troublesome joints. I am presently having some sort of lock in my left shoulder for past 3 months but I have to continue giving this shoulder some workout or stretching exercises to keep the pain under control or to prevent it from growing further.And plz get all your investigations done ASAP because I feel that you have got the flares up right now.
So, plz don't delay else the after effects could be not a pleasant one....
I used to have the same symptoms at the beginning of diagnosis. The only thing that helped was when I got on hydroxyqloroqinine. I still have some pain but nothing compared to before when o couldn't even hold a spoon or a cup. Pain also gets worse when im in a flare. Fingers also swell a little bit. For jar opening there is a simple gadget to help w opening. Not sure how it is called but it is just a round thing made of gum or something. Look it up.
I wear splints at night which reduce pain. I also have a selection of elastic pressure gloves that grip the wrist. I also use athletic tape to stretch bits. I had a hand OT who gave these supports and more. Ask your gp for a referral.
Inflamed tendons. My wrists become horribly sore and I have pain and swelling in my fingers. Some days they are not very useful as hands. At work I have an adapted keyboard and mouse to help me type. The keyboard makes a huge difference. I have daily exercises for my wrists and fingers. My thumbs are particularly tight reducing how far I can bend and mobilise my joints. I have not had any x rays on my hands just my ankles.
Rheumatologist just feels it is part of SLE. My team are very practical and work to keep me working.
Hey sorry for the delay, Thanks for your response. How has the keyboard & mouse been adapted? I’m a student & both my jobs include typing so I’m very interested in this.
Everyone keeps mentioning Rheumatologist I need to look into this x
The keyboard is shaped like a wave and raised at the front. It means my wrists remain level and I am not holding them up or bending them. Microsoft ergonomic
So sorry you are in so much pain. I was diagnosed, with lupus over 30 years ago. My symptoms started with severe wrist pain, so I know exactly what you are going through. My daughter at the time was only a year old and I couldn't even change her nappy. It does sound like you are having a lupus flare, and should be seen by a health professional asap. You may need a course of steroids, not pleasant but needs must.
Oh no Lily25 that must have been horrid! Sorry you had to go through that too. I take steroids on a daily basis, but you saying that has reminded me I haven’t taken any in a few days as I have ran out. I wonder if thats whats causing the issues 🤔 x
You must get yourself back on them Kea..it's likely that your flaring n I'm sorry to say your physically dependent on them. I am too n it's important that we don't stop steroids suddenly as it can have dire consequences 🌈😽😽xx
As Krazykat26 says, you MUST get a stock of steroids and take them again and not only because it probably isn't helping with the wrist pain.
When you are on even a low-ish dose of pred long term your adrenal glands take a holiday and don't produce as much, even any, cortisol. Cortisol is essential to the correct functioning of the body and without it you can become very unwell, even bad enough to need hospital and even intensive care. While you are taking pred it doesn't matter because it does the same job, and that is why your adrenal glands don't need to produce more cortisol. But if you suddenly stop pred, the body can't produce cortisol immediately, it can take weeks or even months for the message to get through and for the factory to get going again because it is a very complex feedback system. That is why you are always told to not stop the pred suddenly and that you must taper the dose over a long period.
Please go to your pharmacy and explain what has happened, they should be able to provide an emergency supply to keep you going until you can sort out a prescription from your doctor.
Hey so I restarted the steroids & the pain & swelling has gone down quite a bit but there is still a nagging pain there sometimes. Thank you for your suggestions. I wonder if there’s some professional I can speak with as I am so uneducated on my condition it’s actually becoming a worry x
About what? Do you have access to a rheumatology nurse?
The charity websites often provide a lot of information about various conditions. Good sources on the internet would include those from the Mayo Institute, the Cleveland Clinic and so on.
Hi Kea. Oh goodness I empathise. I am typing this with a stylus, wearing compression gloves. My GP repeatedly says ask the Rheumatologist. The Rheumatologist says it’s arthritis speak to the Orthopaedic surgeon. The Orthopaedic surgeon says it’s Lupus speak to the Rheumatologist. Not one of them have actually examined my hands, done x rays or scans. At one point my GP said it was carpal tunnel syndrome and sent me for nerve conduction tests which showed nothing. My pain is exacerbated because I walk with two sticks. I use cuffs with metal inserts and thumb spica’s when the pain is really bad. My thumbs are the worst affected. Yesterday I stumbled and my husband grabbed my hand and I screamed. It felt as if my thumb was dislocating.It is really miserable so I hope you can get some relief xxx
Oh noo sorry you are going through this as well. Have you found anything that gives relief? I think the worst thing for me is when people think I’m lying & hit me on my hand or grab my hand just ‘because’ I was in tears literally because of this
The brace with thumb spica eases the pain while they are on but once they are off the burning and toothache like pain is worse. The compression gloves ease the pain but do not eliminate it. I am seeing my GP next week face to face so I will mention it again. Strangely the one thing that eased my thumb joints was acupuncture done by my chiropractor . Xxx
Perhaps not as easy as 2 sticks - but there are crutches that reduce the pressure on your hand because you rest on your forearms. Maybe worth considering to allow some relief?
I have tried crutches but because my coordination is not great I landed flat on my face on the road a few years ago. Gravel rash on my nose and forehead and both arms still through the crutches. I have tried a Walker but although it is fine on the flat, any bumps or inclines are too hard for me. Xxx
Really appreciate the heads up on the avoidance of hand surgery! I’m going to take a leaf out of your book and keep up with exercises and massage. It’s not as bad and less episodes of locking.
I can’t take Ibuprofen at all it causes me to have a lupus flare.
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